Course Articles

Editor’s note: This text-based course is an edited transcript of the webinar, Addressing Complex Trauma Across the Lifespan, presented by Patrice Berry, Psy.D., LCP.

Learning Outcomes

After this course, participants will be able to:

• Define complex Trauma and understand how it can present across the lifespan.
• identify the appropriate assessment tool to match the setting. 
• Identify clinical approaches to consider with children, families, and adults that present with complex trauma.

  Introduction

One disclaimer that I want to give is that I will be going over larger programs that you may need an additional certification for, so this course will not give an exhaustive explanation of the different training. This topic applies to almost any setting, and you will encounter individuals with complex trauma if you have not already. These individuals are often difficult to engage, and taking different approaches can help them meet their treatment objectives. This course does assume a foundational knowledge of the Adverse Childhood Experiences study and a basic understanding of trauma-informed care. This care goes from looking at what is wrong to looking at what happened to you. This is important because it is often that the history of the person is not considered. Going into that detailed history can often give you a better understanding of how to help an individual. 

Complex Trauma

According to the National Child Traumatic Stress Network, “the term Complex Trauma describes both children's exposure to multiple traumatic events, often of an invasive, interpersonal nature, and the wide-ranging, long-term impact of this exposure.” That exposure can be emotional, social, cognitive, behavioral, or physical. It is not an official diagnosis within the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and people often refer to it as complex post-traumatic stress disorder (PTSD). However, it is not an official diagnosis. Experts tried to work on including developmental trauma or complex trauma within the DSM-5, and instead lowered some of the restrictions for kids. This is because practitioners realized that kids were not meeting full criteria for PTSD, and it did not fully describe all that was going on with the individual. Maybe it will be included in the future. 

Clinical Presentation Across Lifespan

Early Childhood (0-5)

• Developmental delays
• Difficulty separating from caregiver 
• Crying and/or frequent screaming 
• Difficulty with appetite
• Nightmares
• Dysregulated behaviors

In early childhood, you may notice developmental delays. These children have had significant neglect during their early years, so there may be speech delays, cognitive delays, or issues with sensory processing. They may have difficulty separating from their caregiver, or there may be excessive crying or frequent screaming that goes beyond what you would expect for that age range. This may be a child who is difficult to console, and you may see issues with appetite. In working with their social worker and treatment team, you can see how to address those issues. The child may also be experiencing nightmares, which is one of the DSM criteria for PTSD. That is a re-experiencing symptom where kids often do present dysregulated behavior and maybe a little all over the place. Often you will get complaints from daycares, or if they are able to engage in preschool programming, they may struggle within those environments.

School Age (6-12)

• Commonly misdiagnosed as ADHD
• Tantrums
• Difficulty accepting limits and “no”
• Express emotional issues (depression or anxiety) as behavioral issues
• Physical and/or verbal aggression
• Academic problems
• Social withdrawal or poor boundaries
• Hypervigilance/Fearful
• Guilt/Shame

Research shows that children in their school-age years are commonly misdiagnosed with Attention Deficit Hyperactivity Disorder (ADHD) because you may see similar behavioral dysregulation. I describe this to families by telling them that dysregulation that comes from ADHD is a prefrontal cortex, which is a frontal lobe issue, whereas trauma is from an overactive amygdala. If it is more of an emotional dysregulation, that may be trauma-related whereas ADHD is a frontal lobe issue. Watch for individuals with complex trauma who are prescribed stimulant medication because you may see an increase in negative behaviors, and that is when families should talk with their prescribing physician to discuss options. I have had families want to see if they could get used to the medication. However, I always advise them to immediately discuss their options with their provider because the medication stimulates the entire brain. 

Regarding a child with complex trauma, they may have an increase in behaviors at times. That is why it is important to get a good assessment of what is going on. Someone can have ADHD and trauma symptoms and it is important to get some of the trauma symptoms under control. This is because regulating those emotions can help before going forward, and that is when you should work closely with their prescribing physician. You may see tantrums for a variety of different issues, especially in difficulty accepting limits or being told no. That is when you might see an increase in physical aggression or behavioral issues anytime a limit is set. You may get a referral to your office if the family is having difficulty managing the child's behavior. They may be more likely to express emotional issues such as depression or anxiety. 

For adoption and foster care, it is often that when a child comes out of a honeymoon period, families will often feel that the behavioral issues are intentional. I view that as survival behavior, and it can be difficult for them to let go of that because it may have kept them safe in a different environment. Individuals with complex trauma may have had to fight for food or fight their siblings within their families of origin, so giving up that physical aggression may make them feel unsafe. That is why having a good understanding of the child's history is important. You may see academic problems and difficulties with learning, and that is when you want to work with the school to make sure they are not only focusing on academics but also on relationships. You may see complete social withdrawal, difficulty engaging with peers, formation of superficial relationships, or struggle with having deeper relationships. They may be hypervigilant, fearful, or jumpy, which are symptoms of PTSD. There also may be guilt and shame related to their trauma if they start to understand their experience in a different way. There may be self-blame, shame, and low self-esteem with that as well. 

Adolescence (13-18)

• Depression and/or Anxiety
• Anger
• Feelings of loneliness/social withdrawal
• At-Risk Behaviors (e.g. running away, unsafe sexual behaviors, substance abuse)
• Poor peer relationships
• Poor academic performance, lack of academic motivation, and/or frequent referrals
• Legal problems

With adolescents, we see an increase in depression or anxiety, and their emotions begin to be expressed as anger. There may also be an increase in feeling lonely, as well as social withdrawal. They may begin to engage in risk behaviors and often get involved with the juvenile justice setting. These actions include running away, substance abuse, stealing, or unsafe sexual behavior. They have poor peer relationships and are seemingly addicted to drama. They may recreate the chaos that they feel in their different relationships. With those individuals, I try to have them increase their ability to calm because they are used to chaos, not positive interactions within a relationship. There also may be poor academic performance, lack of academic motivation, or frequent referrals from school. This is often when the school’s social worker gets involved. We take their history and find out if we need to switch to a trauma-informed approach or refer them to other programs. There may be legal problems around this age as well. 

Adults (19+)

• Behavioral Issues: impulsivity, substance abuse, treatment interfering/self-sabotaging behaviors
• Emotional Issues: (e.g. affect lability, rage, depression, and panic)
• Social Issues: poor boundaries, frequent drama/conflict, domestic violence (victim and/or aggressor)
• Somatization

Adults often present with similar behavior issues, but now you may start to see ingrained patterns that can be difficult to break. You will see impulsivity, substance use or abuse, treatment-interfering behaviors, or self-sabotaging behaviors. They may also engage in behaviors that damage their relationships, as well as emotional issues and difficulty regulating their effect. They may display rage, depression, or panic. You may see poor social boundaries or frequent drama and conflict. There may be some domestic violence where they could be the victim or the aggressor. There may also be an increase in somatization, where there are frequent physical issues and complaints. The more Adverse Childhood Experiences (ACEs) the individual had in the past will usually mean more medical issues. Trauma has an impact on the physical body, and I want to mention The Body Keeps the Score by Dr. Bessel van der Kolk. It talks about how trauma and the body can be linked and how people have found healing with that. These individuals may present to a medical hospital, but not to counseling or other social services. That is where the social worker, being aware of the background, can often help the person get the right type of treatment. 

Borderline Personality Disorder versus Complex Trauma

An individual can present both borderline personality disorder (BPD) and complex trauma. Some research has shown that individuals with complex trauma can have a higher rate of being diagnosed with personality disorders, but there is other research that shows significant differences. If someone does not have certain symptoms then they may meet criteria for a trauma-related disorder and not borderline personality disorder. The DSM criteria for borderline personality disorder starts with frantic efforts to avoid real or imagined abandonment, a pattern of unstable or intense interpersonal relationships, and identity disturbance, so that is where there may be an unstable sense of self. There can be impulsivity in a few different areas involving self-damaging or suicidal behavior, whether it be gestures, threats, or self-harm. They may experience highs and lows that go over a long period of time. This is more of a personality shift versus a biological mood that you may see within a mood disorder. Chronic feelings of emptiness, inappropriate and intense feelings of anger, difficulty controlling anger, transient paranoid ideation, or severe dissociative symptoms may be prominent as well. 

Take note that some of these symptoms are similar to complex trauma, but there are some specific differences. In looking at the two, they both have an impact on the self and the identity. But within borderline personality disorder, it is about an unstable sense of self, while complex trauma includes a chronic, negative self-image. An individual with BPD may have days where they feel good about themselves, but changes in relationships bring down their sense of self. With complex trauma there is a negative self-image in which they almost always feel badly about themselves. Often they cannot remember a time when they felt positively about themselves. These individuals may have had histories of emotional abuse when the negative things that they play in their mind are things that someone else has said about them. They may have someone else's voice internalized as their own. 

Within both cases, you also can see interpersonal issues. With borderline personality disorder, it is more so about fear of abandonment, as well as unstable relationships due to black and white thinking. With complex trauma there is the chronic avoidance of relationships and isolation, and not feeling like they ever belong within the family. I often see this with individuals who have been adopted and teenagers going into adulthood. They may feel like they do not have a place in the world. They do not go back and forth from love to hate because they often do not feel love from their family. I describe that as there being no bottom to their cup. Regarding individuals with complex trauma, it does not matter how much love you put in their cup because everything just pours out. This can relate to a family that might describe how they spent all day with one foster child, but then that child did not feel cared for the minute they spent time with another child. Also, both BPD and complex trauma have issues with emotion regulation. Within borderline personality disorder, there tends to be more impulsivity and difficulty with regulating mood. With complex trauma, it is ineffective coping and reactive anger. It is chronic difficulty versus not having the right skills. That is why there are treatments that can be effective for both. 

Assessment

There are many different types of assessments that look at trauma and a person's history. If you have time to do a thorough social history and ask specific questions, then that would be preferred. You also want to give someone a nonverbal way to share their story in case some are not comfortable talking. I have worked with many patients for a period of time who disclosed their past trauma later on. It may be difficult for them during that initial intake because of an underlying feeling that they will not be understood or will be judged. I think a detailed intake is a great place to start if you have the time. If you are a foster care social worker, you are going to get that detailed social history. If you are working in an outpatient setting, you will be able to get a thorough understanding. 

On the other hand, if you have a larger caseload and are only able to do a brief screening, I recommend the Adverse Childhood Experiences Scale. It lists 10 different adverse life experiences that someone may have went through, ranging from divorce to physical or sexual abuse. It is important to ask about negative life events versus trauma because people may not view what they went through as trauma; they see it as normal, or they somehow have found a way to cope. That is why using the Adverse Childhood Experiences Scale can be a good way to do a screening. If you are in a setting where you have to do a screening, such as the juvenile justice setting, every student undergoes this to see what their ACEs is. Individuals with lower ACEs typically have less of the behavioral, emotional, social, or cognitive problems. Individuals with higher ACEs can bring up some of those problems and may end up requiring additional support. 

There are symptom checklists to look at, such as the Trauma Symptom Checklist for Children, as well as others for adults. There is a checklist for parents, where they fill it out for their young children. You can also do a more comprehensive assessment by using a Child and Adolescent Needs and Strengths assessment. I see these done within social services, or with a child that has been referred to residential treatment. This is because you are then able to take the time and get a more comprehensive assessment of the child's trauma. I like how that assessment includes their strengths because individuals who have been through complex trauma are also resilient. Those strengths may present in ways that cause issues for them because they may be good at advocating for themselves, but it comes off in an aggressive way. That is where we might tweak their expression of that particular strength because there is always traumatic growth that we can move towards. Even though the person has had those difficult life experiences and cannot change the past, they can turn it into positive change and they need help and support in doing that. 

Multidisciplinary Model

With treatment, I think it is best to take a multidisciplinary model to look at all the different people within their life and their home. Within the school you want to be able to collaborate with teachers whenever possible. You can do this by having teachers do updated reports periodically. If they are involved with social services, you want to make sure you are communicating with their social worker. I recommend that individuals with complex trauma be in some type of therapy because it does affect them across the lifespan. There may be times where the trauma is seemingly resolved at age six or seven, but then at around nine or 10 they need to go back to therapy. They do not have to stay in therapy forever, but I want them to view therapy in a positive light, like going to the doctor for an annual checkup. There may be times when they need to attend therapy again and de-stigmatize it. It is to remind them that they are not wrong or crazy. The skills that individuals acquired previously may not work after a period of time, so they can go back to therapy and learn new skills. When I meet with individuals with complex histories of trauma, I prepare families with the knowledge that they can discontinue therapy for a time. However, something may happen in life where they need to return. 

Some states have community-based services and I am licensed in the State of Virginia, so we have intensive home-based and school-based services that are available. There are other states that do not have those types of resources available, so you will have to research the resources that are available within your area. This is important because there are times when social services will approve certain programs that aren't approved by insurance. Are there any intensive programs that are within the child's home? At times, people do need to go to higher levels of care. In Virginia, we try to limit referrals to higher levels of care because it is the assumption that kids do best within their home. However, there are times when kids are not able to be stabilized within their home and need that referral to a higher level of care. 

You also want to make sure that you are collaborating with their doctor because these individuals can present with a variety of physical symptoms. I do not want to call something somatic without checking with doctors, and then realize the patient has a vitamin D deficiency or sleep apnea. If eating is an issue, I rely on the doctor to help the different treatment providers understand whether or not the individual is in a healthy range. We will most likely intervene more if they are not healthy at that time and collaborate with their psychiatrist. Many individuals with histories of trauma, especially kids and teens, can have sensory issues that are triggered by different things. I have worked with some people who use headphones and that allowed them to do things in their community without becoming overwhelmed with sensory input. Regarding individuals with complex trauma, you will want to be mindful of these factors in your office or the different settings they are involved in. Are they too stimulating? There may be too much going on in their classroom. Within trauma-informed schools, they will often recommend teachers still decorate their classroom in a fun way, but have it be more organized and predictable. For younger children with developmental delays, physical therapy could be helpful. If they have some issues with motor skills, they may need physical therapy. 

Neurosequential Model of Therapeutics

Another treatment model is the Neurosequential Model of Therapeutics. It was developed by Bruce Perry to address the impact of early trauma on brain organization. It is a bottom-up model that describes how the brain develops from the brainstem to the limbic system, as well as the different areas of the brain that are impacted by complex trauma. If an affected individual is in their thirties or forties and they have a trauma trigger, they may revert to lower levels of the brain that were not fully developed. It is useful to have a multidimensional lens and a useful picture to assess someone's strengths and vulnerabilities. Bruce Perry also talks about how viewing the client through this lens allows the treatment team to develop interventions to meet their specific needs. This particular model talks about movement and how that repetition can help individuals regulate lower levels of the brain that may not be as well-developed. It is an evidence-based, developmentally sensitive and trauma-informed program. 

The brain develops from the bottom-up, and the majority of brain organization takes place within the first four years. Starting with the brainstem, we describe that as the primitive brain that is responsible for basic survival skills. That is where the fight, flight or freeze part of the brain is. From the brainstem we move up to the midbrain, which is where the motor skills are developed. If someone has motor issues, they may have originated in the brainstem and the midbrain was not fully developed. There may be issues within the limbic system because that is after the midbrain. The next part of the brain with traditional development is the limbic system, which is the emotional center. If you are working with someone that has a lot of emotional reactivity and certain triggers, they may be getting stuck in the limbic area of their brain. The last part of the brain to develop is the cortex, which is where reasoning and judgment happen. If I am working with a 12-year-old, there could be times when they emotionally revert to age two or three. Someone's developmental age may change based on the situation. 

I work with some people who have certain triggers and revert to different areas of the brain. Some examples of interventions for this include music and repetitive movements. I have a friend that would use jump rope because that repetitive movement helps develop those lower areas of the brain for motor skills. There are some interventions that use yoga or mindfulness cards that can include the entire family. Eye movement desensitization and reprocessing (EMDR) is an example of one of the larger systems that helps reprocess traumatic memories from the affected part in order to prevent flashbacks. It is an effective treatment that has been shown to help work on lower areas of the brain that may not be developed. Drumming can be great as well because of the repetitive movement. Some people benefit from equine therapy or a therapy dog that was specifically trained to help the individual. Maybe the dog helped predict their flashbacks or can tell when they are about to have a panic attack. If some people have companion animals when they are having a difficult moment, it can help calm them. Art therapy and drama therapy are additional examples of interventions that can help develop the lower regions of the brain. 

Rolling with Resistance

Working with individuals with complex trauma are often my more difficult cases. But I understand, which does not excuse their behavior but helps me explain it. This is because when I take this approach and decide to roll with resistance, it keeps me from getting frustrated with the individual I am working with. I train and supervise mental health professionals, and I work with my staff on not working harder than their client. This is because it is often that I see mental health professionals get frustrated when they want the client to do more than they are willing. If we meet clients where they are, maybe they will move to a different level down the road. However, getting frustrated with them because they are not doing what I want them to do will often hurt treatment because relationships are one of the most important things in working with trauma survivors. I like to remind myself that both the client and their families are doing the best that they can. My concern is that they are still not being safe, or maybe their best is causing problems for them. Are they willing to learn some different skills?

As a clinician, you want to be aware of your own triggers and reactions. This is because individuals with complex trauma can read emotions extremely well. They will be able to find that trigger and push it to see what happens within the relationship. As the social worker, that is when you use the skills we teach our clients to regulate your emotions and appropriately respond. It is fine to say, "In this room, I will never disrespect you, so I'd really appreciate you making sure to not be disrespectful of me.” I define respect as an appropriate tone, not name-calling, and not taking personal hits. I remember talking with someone about how they did not have to like the person that they were working with, but they did need to respect them. It is important to set limits and boundaries because sometimes clients push those buttons to get a reaction.

My belief is that I have to agree to be manipulated because if I can see manipulation coming, I can change my response and then the person does not get what they wanted. But we are all human and that is where I have to manage my emotions after the session. If it is a very difficult client and I am in outpatient practice, I may schedule a shorter session with that client. If they are not responding to redirection, maybe I bring the parent in to see how I can adjust things to be emotionally safe for both the client and myself. Make sure to be flexible because a big part of trauma-informed care is giving the client some choice. For individuals with complex trauma I typically have a range of three to four things I might try, but if I present all of those things and the client declines them, I can ask them what they want to do. I present these options early into treatment so I can learn what clients like. Maybe some will want to pick an appropriate song and listen while we talk about it, if they are willing. We can also pull up the lyrics if it is a song that is really important to them. Being flexible with your treatment is helpful because inflexibility can lead to triggering the emotional part of the brain that is often overactive within individuals with complex trauma. 

It is also important to not give up. There is a difference between telling parents that the client is not a good fit for you, versus canceling treatment because the client will not talk. I have received clients after another professional discharged them without having a final session. It is difficult to engage these clients in treatment because they may learn that if they do not engage, they can get out of it. As a social worker it is important to try and meet people where they are and not lose hope. Not losing hope could mean redefining what success means for this client because your goals for them might be different from their own. We want to keep a nonjudgmental posture because these clients are very good at picking up when they are being judged. There is a difference between providing feedback on behavior versus judging the client. Always keep a nonjudgmental attitude towards the person. I might have concerns about specific behaviors, and you may have to be intentional in separating the two because these individuals are riddled with guilt and shame. That is often when I see them have difficulty accepting responsibility for their behavior. It goes between believing they did nothing wrong to thinking they are worthless and hopeless. 

In regards to individuals with complex trauma, be consistent with scheduling, predictable in sessions and following through with appointments. When I went on vacation, I knew that I would have to rebuild the relationship because of the break in consistency. Through preparing myself for that, it helped me not be as frustrated with having to restart the therapeutic process. If we were working on deep topics before I had a planned vacation, we would come back with a check-in in order to build those relationships again. If you have to refer to another provider or terminate services, make sure to do appropriate discharge planning.

Parent Training and Involvement

Parent training and involvement is one of the most important things to consider while working with individuals with complex trauma, especially children and teens. This is because therapists can work on rebuilding the relationship, but that typically occurs over a short period of time. If the parent can get on board with taking a different approach, I have seen progress happen quicker with clients. This way, parents feel less frustrated because if they make changes within their home setting, families have success in reframing behavior. Once again, this is not excusing behavior, but it does help us explain it. One of my favorite examples for this is stealing food. If an individual has had a history of neglect from an early age, we will often refer to that as hoarding food. The word “stealing” has serious consequences while hoarding is more of an impulsive behavior, so families do not get as upset over hoarding. Educating yourself on how to address behaviors without blaming or shaming is important because these individuals already shame themselves in their own minds. We are going to address behaviors, but we are going to do it in a way that targets the behavior and not the person. I recently heard someone say, “Discipline should teach, punishment hurts,” so we want to make sure that we are teaching them about changing their behaviors. 

Having parents explore the root of why certain behaviors are triggering them is important as well. Maybe stealing or lying triggers something that is often from their own childhood. They might be fearful of what that means for the child down the road. When we parent out of fear, we typically make more harsh or rash decisions than when we parent from a more mindful place. Teach parents to recognize their trigger, and then you might find out that their family was always lying for one another in the past. This may have led to the parent saying, "When I'm older and have my own family, they're never going to lie.” One of my interventions I do for lying is not asking a question that you already know the answer to. If the child has cookie crumbs all over their face, do not ask them if they ate a cookie. Even kids without complex trauma are going to say no at times because it is a part of the developmental process for children. That is often why I recommend asking, “Show me your homework,” versus “Did you do your homework?” A parent with a child with complex trauma is going to need to be in constant communication with the school because the child may come home and say, "The teacher said there is no homework for the rest of the year.” The teacher did not say that, so being in communication is going to be very important or the child will continue to hold to that lie. Even when you say, "Hey, I'm emailing the teacher,” they will still say, "Yes, she said it.” I also try to have families use humor when talking with the other professionals, or if they can get into a parent group for those with foster kids. It can often be validating to hear that other people are struggling with the same things. 

When I have parents come in for their first session I often start by talking about typical examples of things kids with histories engage in, and the parents have a look of relief that says, "I thought it was a bad parent. I thought I was a bad person.” Doing that has often helped families disarm some of their defenses in being able to open up to me. I do not have a judgemental attitude towards the parents because I feel that they are doing the best they can. I want to help give them different skills to try because I might recommend something that may not work for their child. It is important to make sure that they are increasing their toolbox because things may work for only a period of time, which is why the relationship with an ongoing provider can be important. They continue to get additional updates, such as getting creative with ways to say yes instead of saying no all the time. With one specific treatment called Trust Based Relational Intervention (TBRI), they talk about ways to deal with children that have issues with food. Parents can have a “yes” table, in which children asking to have nutritious food is always a “yes.” However, it may be yes with a condition. For example, if the parent is cooking dinner and the child asks for a piece of fruit, instead of saying, "No, dinner is almost ready," shift a different way and say, "Okay, you can have it. Set it at the table and you can have it once you finish your dinner.” It is that often the child never eats the banana. If they do, they do not feel like their basic needs are being deprived. 

Regarding children that have histories of significant trauma before the age of four, their brains can easily go into survival mode. That is why I think saying no can be triggering because they are reacting and responding as though this is the individual that is abusing and neglecting them. I have had students that get into rages, saying, "Why don't you care about me? Why won't you feed me?" In some cases they may have just been asking for a snack and they were told no. Now you will have to say no to certain things, but you want to save those no's for big things. The parent may have to let some of the smaller things go, but this is just a different way of thinking about things. We want to focus on safety-related behaviors while letting go of minor annoyances because the child may chew with their mouth open, but they have a history of significant trauma. Instead it would be beneficial to focus on the speed that they eat instead of how they eat, because that might be a safety issue. Focusing on major things and letting go of some minor things can be good for building a relationship because people do not want to be in a relationship with those who always tell them no. With parents, they feel like they should always be mindful of their child. Letting a few minor things go can often be very helpful. 

Creating “Felt Safety”

As I mentioned before, TBRI is an intervention that has been developed by Karyn Purvis. There is a treatment protocol and a free chapter available online. It talks about creating physical, emotional, social, and cultural safety. With felt safety, it is a feeling in which you can be physically safe, and still not feel safe. It is often that individuals with complex trauma rarely feel safe, and I want to talk to those clients about the areas of their life where they feel safe. Is it when they are all alone and no one is around? For some people, being alone is when all their thoughts come. They may feel more safe when they are with a trusted caregiver, so it is important to learn about what makes them feel safe and unsafe. 

With physical safety, we may learn that they feel unsafe in their bedroom at night. They may be 15 years old, but maybe bad things happened at night and having a nightlight would help them. This would also help them save face if there are some other children living in the house. Maybe sleeping with the door open could be another safety precaution. "We're going to start sleeping with the door open, just so I can check in at night.” Having the door open with the hallway light on helps get some additional light into the room. Trying to find those creative ways to help clients feel safe when they are physically safe is important. If they are not in a safe situation, we want them to get out of it. However, we want to increase the times that they feel safe when they are physically safe. There are a lot of interventions that you can do around that. 

Creating emotional safety is where we let clients know that emotions are neither good or bad, they just are. Have them get comfortable with their emotions because often they want the emotions to go away. Social safety can be created within their peer group. Some helpful resources include The Deepest Well by Dr. Harris, The Connected Child by Karyn Purvis, and other additional books by Bruce Perry and Daniel Siegel. I have also included video resources. I have families who struggle with finding time to read a whole book, and quick links work better for them. With these links, it may be appropriate for the patient to watch and get an understanding of what is going on with them as well, which can be validating. 

Resources

• The Deepest Well: Healing the Long-Term Effects of Childhood Adversity by Nadine Burke Harris, M.D.
• The Connected Child: Bring hope and healing to your adoptive family by Karyn B. Purvis, David R. Cross, & Wendy Lyons Sunshine
• The Boy Who Was Raised as a Dog: And Other Stories from a Child Psychiatrist's Notebook- What Traumatized Children Can Teach Us About Loss, Love, and Healing by Brue D. Perry & Maia Szalavitz
• The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel Van Der Kolk, M.D.
• The Neurosequential Model in Education: Introduction to the NME Series: Trainer's Guide (NME Training Guide) by Bruce D. Perry & Steve Graner
• The Whole-Brain Child: 12 Revolutionary Strategies to Nurture Your Child's Developing Mind by Daniel J. Siegel & Tina Payne Bryson
• The Connected Parent: Real-Life Strategies for Building Trust and Attachment by Lisa Qualls, & Dr. Karyn Purvis
• Attached: The New Science of Adult Attachment and How It Can Help You Find and Keep Love by Amir Levine & Rachel Heller

Video Resources

• Karyn Purvis Institute of Child Development: https://www.youtube.com/channel/UCBW9RKLvTR5C46ey7gy3NuA

•  Survival Brain versus Learning Brain (Jacob Ham): https://www.youtube.com/watch?v=KoqaUANGvpA

• The Repair of Early Trauma: A Bottom Up Approach (Beacon House): https://www.youtube.com/watch?v=FOCTxcaNHeg

• What is Complex PTSD (BetterHelp): https://www.youtube.com/watch?v=NeQ8bgUAnFg

• How Childhood Trauma Affects Health Across a Lifetime (Nadine Burke Harris)

Summary

In summary, we were able to define complex trauma and understand its different presentations across the lifespan in order to avoid misdiagnosis. We then talked about assessing complex trauma and some different clinical approaches that focus on a multidisciplinary approach, including the whole team to create safety and address complex trauma across the lifespan.  For more information regarding culturally competent practice, please review the NASW resource Standards and Indicators for Cultural Competence in Social Work Practice. 

References

Alisic, E. (2012). Teachers' perspectives on providing support to children after trauma: A qualitative study. School   Psychology Quarterly, 27(1), 51–59.

Briere, J. (1996). Trauma Symptom Checklist for Children (TSCC), Professional Manual. Odessa, FL: Psychological   Assessment Resources.

Ford, J. & Courtois, C. (2014). Complex PTSD, affect dysregulation, and borderline personality disorder. Borderline   Personality Disorder Emotion Dysregulation 1, 9 

Fox, B., Perez, N., Cass, E., Baglivio, M., & Epps, N. (2015). Trauma changes everything: Examining the relationship   between adverse childhood experiences and serious, violent and   chronic juvenile offenders. Child Abuse   & Neglect. 46.

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Editor’s note: This text-based course is an edited transcript of the webinar, Using What We Know About How We Grow: Utilizing Development as an Assessment Tool for Early Childhood Services, presented by Alison D. Peak, MSW, LCSW, IMH-E.

Learning Outcomes

After this course, participants will be able to:

• Identify an array of developmental milestones in both the physical and social-emotional domains.
• Identify both structured and unstructured methods of assessing development.
• Consider the role of development in understanding traumatic experiences and identifying treatment interventions.

Introduction 

My lens is in this place of early childhood trauma. My clinical work is with children who have experienced trauma before the age of six. That often entails working with children, either in the child welfare system or with international adoptions. While this is my lens, that often means that this is the place where my stories draw from, and my lived experience is. But so many of the things that we talk about are generalizable outside of the early childhood field. One of the things that I often talk about, when I get the opportunity to train and to teach at local universities, is this piece that makes early childhood unique is that being a child has a universality. We don't always know what it is to have had a substance abuse issue or to have been in a domestic violence situation, but we all know what it is to be three-years-old. We all have an inherent experience of what it is to try to get our needs met and for someone to not understand us or to be the smallest person in the room and not always have people understand that we have a perspective and experience at hand. Being able to recognize that universal experience and how it plays into the development of individuals as a whole, their personality formations, identity formation, ability to engage in relationships, and manage stress across the lifespan, is essential to the work that we do, as social workers. It's essential to being able to really consider the whole realm of what's occurring in a client's life and how we best meet their needs where they are. 

Child Development

• Generally all Social Work programs require some level of HBSE education and childhood development training
• Few programs emphasize child development as marker for assessment and intervention
• An awareness of developmental milestones and frameworks assists social workers in understanding an individual’s strengths, areas of growth, experience as a child, and current foundation for relationships

Generally speaking, in all social work programs and social work education, there is some level of Human Behavior in the Social Environment (HBSE) education. At some point, some of us in a BSW program learned some basic information about child development from prenatal and pregnancy through death and dying. We have all had that to some extent. But, oftentimes that really is the only look at child development that we get from an educational standpoint. We are really trying to cover the entire lifespan in one semester. That can often get complicated and it also means that maybe we didn't get a super thorough dive. Very few programs really look at child development in an intensive way, and even fewer of those really talk about how that developmental knowledge and awareness translates into a place of assessment for treatment planning and intervention, and long-term conceptualization of presenting issues. I think that this is going to be an interesting conversation as we take some of those base concepts that we all know and look at what that means for us in a point of action and how we take it to a place of engagement. This also allows us to be able to identify the strengths of individuals, areas of growth, and what we in psychodynamic early childhood work refer to as an internal working model. Just as in Cognitive Behavior Therapy (CBT) it would frequently be considered your core belief, like the thought of what is it internally that I know about myself and how I am with the world and how the world is to me. These things are rooted in the place of what our experiences are that overlay, much like an old-school transparency, with our child development at that time. 

Child Development Review

• Social Smile at 6 weeks
• Stranger Anxiety at 8 months
• Pointing by 12 months
• Should be increasing ability to self-soothe, move away from caregivers to engage in interesting activities by 18 months
• Walk by 1, Talk by 2
• Vocabulary by 2: 250 words, by 3: 500
• Night terrors are typical around age 3

Let's review for a bit. At some point, we all probably had a quiz on these things. Very rarely is it the thing that we pull out of our back pocket and turn into an active place of assessment. From the moment of birth, we know that all children are born with three capacities. They are born knowing the smell of their mother, knowing their mother's voice, and with some sense of fear of heights or fear of falling. That's really a survival mechanism. Babies fear falling because if they fell, more likely than not they would die. Outside of that, at the point that you're born, you can only see about six inches from your face and you can't see anything in color. Our capacities are limited. Newborns are not blank slates. They are not completely feelingless, thoughtless blobs, as has been sometimes the assumption historically. We know from T. Berry Brazelton's work that even hours after birth we can get babies to be able to regulate themselves in their own body temperature and regulate their own emotional states. They will turn their heads to follow sounds, especially the sound of their mother's voice. They will track objects and they show a keen interest in what is going on around them and how they are taking in that greater world. 

By six weeks we're looking for the development of a social smile. Many parents will be very insistent that babies smile before six weeks. That happens sometimes, but it is pretty rare. By six weeks we're looking for babies to smile with the intent that there is an emotion associated with it, that they do feel happy, and that, typically, with that social smile, they have also associated that someone is going to smile back at them. This is an indication of connection and of joining.

By eight months we are also looking for babies to be able to identify clear stranger anxiety. This goes into that thought of diagnosis around separation anxiety. At eight months, we want to see some separation anxiety. We want to see that if someone a child has never seen before walks into a child care center and picks up a nine-month-old, that baby should shriek. Again, there is survival inherent in that. "I don't know this person and I don't know that they're going to keep me safe." The assumption is that this is dangerous and I need to let somebody know. We're really looking for infants to have developed this sense of seeking out their primary caregivers and wanting to maintain close proximity to them. At this point in development, we're not looking at that from a place of concern or a place in which a later diagnosis of separation anxiety would be plausible. That later diagnosis looks at a bit more age and a bit more intellectual capacity to really anticipate separation, and to fully understand object permanency in some of those pieces. We can't see really intense separation anxiety in young kids, two to three years old, but we are looking for it as a positive developmental marker by eight months. 

We also want to see pointing by 12 months. I can remember years ago when the first article on the impact of pointing was published. It was such an interesting landmark piece around something that many people had often taken for granted. Children pointing by age one was indicative of so much, including the sense that adults would enjoy what children found enjoyment in and that adults would be able to identify what they were looking for. Children pointing are attempts at shared connection and at some level of communication. Pointing also is a signal in early childhood that children are aware that their thoughts are not identical to those of adults.

One of the first markers that we see for children on the autism spectrum is that they did not develop the capacity to point and that when adults point, they often cannot track it. They know you're pointing, but they cannot figure out why, or where, or what you're referencing in that gesture. Pointing by 12 months is indicative of this place of positive connection, of independent thinking, and of beginning development of theory of mind. It's also a place where in situations of high levels of neglect we see that this is a milestone that often won't develop. There hasn't been shared connection, there hasn't been an experience that people see and hear me, or that someone is going to know that I want something through this gesture. That piece of social communication will often lag. 

By 18 months, we're looking for an increased ability to self-soothe and to move away from caregivers and engage in other activities. We are also looking for them to come back. Often in relationships, we talk about this piece of looking for kids to make a circle. We are looking for them to start with caregivers, go out to explore, and come back to be admired, in that very classic circle of security language. They should come back, meet this reference point, and know I am safe to move out and go away and look at new things. Also, there will be a point I need to come back. I am not constantly on my own. I am not alone in the world. There are times that I'm going to need adults to meet my needs. The classic adage is walk by one and talk by two. We're looking for kids to be able to walk somewhat independently by 12 months. Some kids are more stable than others. There are definitely babies that walk by nine months. But, we start to get concerned about gross motor skills if babies are 13 months plus and still not walking.

It’s the same thing with talk by two. The standard is that by two we're looking for kids to have some level of language. Single words are sufficient. We're not looking from a developmental trajectory for words to be paired until between two and a half and three years. Even at that point we're still looking at just two to three-word sentences. Again, some kids develop quickly in that area and other kids are a little more behind. But by two, we are looking that there's some capacity for language. Generally speaking, by two, kids should have about 250 words in their vocabulary. When we add up words such as ball, milk, cookies, dog, cat, mom, dad, and grandma, it's not difficult to get to 250 words without there being a lot of linking. In linking, we are thinking about that idea of putting words together such as, "Ball go?" "Outside?" We want there to be some kind of intentionality and that the words are more complex than just naming objects. 

Definitely by three years we are looking at a vocabulary of about 500 words. Again, we are really looking for those words to begin to get connected and to see some level of verbiage and some general grammatical structure.

One of the other pieces that we know is kind of a precipice for parent anxiety. In this birth to three age range is the development and existence of night terrors. Night terrors are these super intense horrific dreams that kids at about age three will have. They often wake up in the middle of the night in cold sweats, are shrieking and screaming, completely inconsolable, and totally unconscious. They don't remember it the next morning. They have no recollection of it. They are incredibly anxiety-provoking for adults who watch kids go through that process, and not at all anxiety-provoking for children themselves. Part of what causes night terrors in this classical developmental sense is that kids are not fully regulated in their sleep patterns, and so they drop into a really heavy REM sleep, but can't bring themselves out of it. That kind of REM cycle starts and is pretty heavy and they're stuck down there for a while. Whereas adults, when we get too deep we know to come back up, so our body regulates in that sleep cycle a lot easier. Kids who struggle with night terrors are really, really asleep. In that place we'll often see referrals around this age. We will often see lots of communication with pediatricians about concerns for sleep. It is much more related to their bodies beginning to process sleep cycles and less to do with actual anxiety-provoking events for the child themselves. 

Child Development 3-5

• Increased vocabulary to generally appropriate grammar and 5,000 words by age 5
• “Trying on” of different roles through play and projection
• Egocentrism - I make everything in the world happen and bad things that happen are all my fault
• Beginning of friendships with peers. Lots of imaginative play. Use of play as a method of mastery
• Capacity to follow parental expectations when parents aren’t present
• Increased ability to regulate self when parents aren’t physically present

By five years we are looking at a vocabulary of about 5,000 words, and grammar should be pretty close to appropriate. We will see kids at this point misconjugate verbs from time to time. They will say things such as, "They was," or "He done gone," things that, again, are not grammatically correct, but there is this clear sense of past and present tense, of multiple sections to a sentence, and of using a verb. By five we are also looking for kids to have a clear marker around the use of "I" and "me." For example, "I went to the playground.” "They gave the ball to me." Not, "Me went to the playground." That shows a clear understanding of how to utilize those words and pronouns. Grammar is an ongoing work of art, but, by five, most kids have a pretty good grasp on it.

From ages three to five we are also seeing a lot of what we call trying on, or mastery of different roles, through play and projection onto play. Playing house and dress up, being superheroes and Power Rangers, fighting off bad guys, and working in that place of mastery through play, help children manage things that they are concerned about. 

From ages three to five we also see heavy amounts of egocentrism, which is completely developmentally appropriate, and at times frustrating. One of my favorite stories is about my nephew who was probably two and a half to three and a half years old. He had an Elmo doll and when you pushed Elmo's chest it would say, "Elmo is happy to see you." He would always say, "Elmo is happy to see me" as if Elmo was programmed specifically for him and not anybody else in the entire world. At that age it really does feel, from our perspective, that the entire world revolves around us as individuals.

There is a certain level to which egocentrism hangs on throughout our lifetimes. I think, generally, one of the conditions of humanity is that we all believe we control things, way more than we probably have any impact on. We associate that things are much more quickly our fault, and being able to give grace to that. When we really are in this age of three to five years, egocentrism really does dictate that everything that happens in the world, good and bad, are as a result of something we have done. For example, I took a nap and then the dog died. It must have been because I fell asleep, not because the dog ran outside and got hit by a car. We don't have the ability to connect cause and effect in those ways. Because we feel that everything in the world is our fault, that associates to even the very big things. When we talk about this place of childhood trauma, then that also goes with the sense of I have experienced abuse because I am bad. I made those people that angry. I did something that resulted in getting punched, burned by cigarettes, or left outside on the porch for extended periods of time. 

In this three to five range we also see the beginning of friendships with peers. Between three and five lots of kids are in some kind of child care setting, whether that’s voluntary pre-K, preschool, or something else. With that, there is the beginning of deeper friend relationships. Prior to about three years old, we see opportunistic play. "I wanna play with the blocks, Joey's also in the blocks. Joey and I are friends as long as we're in the blocks.” But, in 15 minutes when I wanna play outside, then “Brandon's outside and now I'm gonna play with Brandon." But, from three to five years, we see kids seeking out other peers out of preference, really preferring to engage in activities because of who is engaging in the activity, less than the activity itself. We start to see them really engaging in imaginative play with peers, whether that is playing house where everybody has a role, or everyone is playing Power Rangers and gets their own spot. Think about how those concepts then kind of build on top of each other. 

Three to five is also the place where we see the beginning of kids’ capacity to follow parental expectations when parents aren't present. "You stand right here. I'm going to walk around the corner and I'll be right back." The kids can hold on to the expectation that they are supposed to stay in one place. Think about Kohlberg's moral development and the idea of the marshmallow test, when the child is given the marshmallow and told, “If you don't eat it then I'll give you two when I come back.” Then adults can exit the room. Not all kids, but a fair number, are able to hold that expectation internally in anticipation of what's to come.

Also, kids at this age are at an increased capacity to regulate themselves when parents are not present. When we think about infants, they really have to have an adult to be able to self-soothe. They have got to have somebody who will pick them up, who will hold them, who will rub their back, who will give them food, and blankets, and bottles, and pacifiers, and all of the myriad of things. By three to five, kids are spending lots of time out of their day without their primary caregiver. They can begin to engage in self-soothing by saying, "I am sad and I need some time alone” or, "I really need to go find my teddy bear” or, "I want to call my mama." They can ask for what it is that they are after, and much more clearly be able to regulate their own emotions without having that caregiver right by their side. 

Child Development 5-10

• General slowing of developmental milestones, by deepening of foundational capacities - fine motor skills improve, grammar and syntax expand, friendships are more stable and consistent
• Formulation of individual hobbies, routines (dance, basketball)
• Ability to predict patterns of behavior
• Resolution of fantastical thinking by age 8
• Beginning to identify perspectives of others

In that five to 10 range, what we see is a general slowing of developmental milestones. Between birth to five, the brain’s capacity for development and learning and increases through synapses are pretty intense. Then we see that narrow down between five and 10 as kids are not growing as rapidly. The percentage of growth between when kids are born and when they are five is exponential. While kids do continue to grow between five and 10, it is not on the same scale. What we do see is rather than this rapid development of new milestones, a fine-tuning, and a deepening of the milestones that do exist. We've learned to walk, we've learned to run and now we spend lots of time practicing how to be the fastest. We have learned to begin to draw and write, so now we spend time practicing handwriting. We are taking milestones we've already hit and fine-tuning them to a place where they're much more adult-like in their capacities and able to get a deeper learning from those.

We also see, between five and 10, that kids really do develop their own hobbies and routines and that they have an activity that they really prefer to engage in. They are beginning to set their own typical routines. "Every Saturday morning I have Cheerios, and then I watch this on TV, and after that, I play outside." They have rhythms to their daily process that are pretty consistent and stable. 

Kids in this age range are also able to predict patterns of behavior. "I spilled my juice on the carpet and I know that's gonna make Mama mad. And when Mama gets mad, then sometimes she sings, and that means I should go play in my room." They can clearly connect cause and effect and have a really good idea of what is to come. For example, "I know that if I get in trouble at school because I hit somebody on the playground, then Dad's gonna be upset when he picks me up." We're looking in that same place of being able to predict patterns of behavior, that kids are also beginning to be able to identify perspectives of others who are engaged in that behavior. "I kicked somebody on the playground, and then Sarah cried because it hurt and her feelings were sad." They may not be able to fully realize all of the layers of how now Sarah doesn't want to be your friend because this is the third time you kicked her this week. But they can begin to associate with what that perspective is, and what the feelings may have been for the other child or adult, or whoever in question in this situation. 

By age eight kids usually have a pretty clear resolution to fantastical thinking. Fantastical thinking is the line between what is real and what is fantasy. By age eight, they should know that unicorns don't exist and should have some real doubt and conversation about doubt around things like Santa and the Tooth Fairy. One of my kids is six right now and is super fascinated with this.  He will watch TV and say, "Mom, Paw Patrol's not real, right? Like, they're not down the street, right? Like, we can't go meet them." He has this idea that these are characters that he knows and things that he understands about them, and they have feelings and likes and dislikes, but yet they don't exist.

There's a real play at this six to eight age around understanding what is real and what is make-believe. When we see fantastical thinking extend beyond age eight, it is definitely a place for assessment of what is motivating that. There are some real reasons why kids would hang on to fantastical thinking beyond that, and some of them do include developmental delays and some kind of cognitive difficulty. There are others, but those are generally primary. 

Neurological Development

• Synaptic connections develop rapidly in the first 3 years of life
• Generally the idea of “if you don’t use it you lose it” but also “what fires together wires together.”
• Oxytocin and Cortisol are used by the brain from birth to regulate emotions and to send clear signals about activities and relationships that are un/safe.
• Increased levels of oxytocin and cortisol act as reinforcers within the neurological system that result in increased number of oxytocin/cortisol receptors for life.
• Neurological developments occur from the brain stem forward, resulting in greater development in complex areas of through as we age.

When we think about neurological development, as I said a few minutes ago, one of the things that we think about often is the time between birth and 36 months because the number of neural connections that are made is about a million a minute. Those synaptic connections are rapid and constantly firing. We know that if you don't use it, you lose it. If we are not developing capacities in a wide range in early childhood, then it's a lot harder, later on, to make your brain do those things. One of the things in my background is that I speak fluent Spanish, which I learned to do later in life during college. It was really hard. Often, we see kids in this birth to three range that when they have grown up in bilingual households, gone to bilingual schools, and engaged in TV that's in English and Spanish both, it just comes second nature to speak both languages. They didn't spend money on a degree and several years practicing to be able to limp their way through a good conversation. There is this piece of if you don't use it, you lose it.

There is also the saying, “What wires together fires together.” Within the brain, there are groupings of synapses that go together. Certain muscle movements are associated with emotional release. Our feelings and our stress center also impact our development in gross motor functioning. If those things are wiring together and there is a delay in one of them, then there will also be a delay in the other piece that is wiring side-by-side. 

Thinking about the neurological aspect, if there has been a developmental delay in one area, there will also be side effects in others. The other thing about understanding child development in relation to child trauma is that oxytocin and cortisol are essential hormones in looking at danger and proximity in early childhood. From the moment of birth, the brain emits both of these hormones to say what is safe and what is dangerous. I often talk about this being almost the Applied Behavior Analysis (ABA) of neurology, that if we are in a place where people are kind to us and they meet our needs and we feel comfortable, our brain will elicit oxytocin that says, "This is a positive thing you want to repeat." When we are in situations of danger, or when people are angry at us or don't meet our needs, then our brain will elicit cortisol that essentially says, "This is a behavior you do not want to repeat." There are really clear signals about activities and relationships that are safe and unsafe. It’s important to establish that neurological reinforcer.

Those developments really do occur from the bottom up. Thinking through brainstem up to the frontal cortex, which is also associated with greater complexity and development, the frontal cortex piece of our brain is the last to develop because it is the most complex. When our brain is able to feel safe and calm, then it will speed through this process of development in the back part of the brain and spend more time developing that frontal cortex. In situations where we have felt high stress and threat, then the opposite is true. Our brain spends more time in the back and base of our brain and not nearly as much time building this frontal cortex. If we don't use it, we lose it.  

Trauma and Development

• Trauma in early childhood “arrests” development at the age in which it occurs.    
• Trauma in early childhood frequently results in delays in both social-emotional and gross motor development
  • Social-Emotional Development (The developmental milestones around relationships, self-regulation, social skills)
  • Gross Motor (Physical development such as ability to speak, run, skip, etc.)

We often think about that trauma in early childhood essentially arrests development at the stage in which it occurs. We talked about how development occurs in waves and through milestones, and that there is the concept of both social-emotional and gross motor development. Trauma essentially sticks wherever that development is. If we have a kid where there's been a major increase in chronic trauma, or one really large trauma at age four, then we're going to see that development maintain there until the trauma is addressed, even if our chronological development continues. We look older, we're taller, we have more weight, and we're in the fourth grade, but we still function in this place from the moment when the trauma occurred. It really does delay, pretty frequently, both social-emotional and gross motor development. 

The area of social-emotional encompasses developmental milestones around relationships, self-regulatory capacity, and social skills. Gross motor is the physical development side, such as the ability to speak, or run, or skip. We do see delays in both domains for children who have experienced trauma, and especially for children who have experienced multiple ongoing trauma. That can look like poor development of personal relationships with peers. It may also look like difficulty in regulating when big emotions arise. It can also show up as speech delays.

A lot of kids from early histories of trauma are quite clumsy. Their fine motor and gross motor skills are just not fully up to par. Their vestibular internal sense of balance is not where we would think of it to be for their typically developing peers. For children with early histories of trauma, it is observable that interactions with the world feel much younger than those of our same-aged peers and are often times lagging. 

Trauma and Child Development

• Interpersonally, early childhood trauma frequently results in dynamics that are reflective of the age of trauma.
• Problem-solving and self-regulation capacities that are much younger than the client’s age
• Difficulties in understanding perspective of others
• Prolonged belief in fantastical figures
• Interpersonal relationships reflective of younger dynamics

When we think about child development, not only does trauma delay further child development, but it also delays development in general. Early childhood trauma frequently results in dynamics that are reflective of that age of trauma. The example I gave was of trauma at age four that impacts a fourth-grader, but it goes beyond that. It often shows up in our work with adults or in marriage and couples counseling. You might see this if there was a trauma at age 13, and at 35 continue to expect that social relationships are going to mimic that of our relationships at 13, or that we continue to regulate our own senses of stress and find identity in the same ways that we typically would if we were still 13.

There is a persistent theme similar to the idea of Erikson's Stages of Development. I had a professor who would refer to it as the idea of packing a bag in that you pack your bag with what you have at that stage of development and then you move on. When we haven't packed the bag with what we need for the next stage, we just stay for a while until we figure out what that need is, and then are able to meet that need and move forward.

Those problem-solving skills reflect the age where trauma occurred and the regulation capacity of the person. Again, throughout not only adolescence, but into adulthood, it will come up that adults who have experienced chronic trauma as children often are much more impulsive, have a lot of difficulty engaging in really healthy relationships, and are in that place of constant fight or flight. Part of that is because that's the way that children function. We remain there neurologically because we haven't yet gone through that stage. 

We will also see continuing difficulties in understanding perspective of others. We talked about the capacity to understand alternative perspectives developed between ages of six and eight. Even at that point, the understanding of another's perspective is really rudimentary. We can get to the place of like, "I kicked somebody on the playground and they were sad," but often we don't get to understanding that that person had also had a hard morning and their other friend had been mad at them, and so they were extra sad because it felt like everybody was mad at them. We'll see that carry through often in adolescents when they're questioned such as, "Why did you do a thing?” or, "How did we decide that this was our best course of action?" They will respond with a shoulder shrug and “I don’t know.” They know there had to be a reason, but cannot give words to it in that space. The same thing happens as those individuals get older. We still see this very flat understanding in the perspective of others. They can say, "I'm sure she was sad," but they really can't step outside of themselves to alternate perspective and think about what the full experience might have been like for somebody else. 

We do see prolonged belief in fantastical figures when children have had experiences of trauma early on. Again, a lot of that is delayed development. It's also due to delayed object permanence where they think, "I'm not 100% sure what exists when I'm not around. And where people go or what happens from there." Kids will often hang on to these fantastical figures as a comfort for all of the really rough things that they have been through. The idea that there is something magical and that there is someone out there in the world who's really good can be highly comforting. We will see those 12 or 13-year-old kids continuing to believe in Santa Clause and the Easter Bunny. This furthers some of what we have talked about with delayed social skills because the other kids in their classroom, who are typically developing same-aged peers, are really going to have a hard time with that. They will often think, "What is this kid in my seventh-grade class who still believes that Santa's a real thing?" That creates secondary opportunities for there to be strife in peer relationships and potentially for other traumatizing events. Our mismatch in development now creates a space where there's going to be a response, and a potentially negative response from greater society. 

We have talked about how relationships, interpersonally, are also going to be reflective of younger dynamics, that there are expectations that people are going to respond the way they did when we were in seventh grade, and that we can engage impulsively in relationships and that people easily forgive and forget, much like early high school. There's still a lot of that implied juvenile formations of relationships, because we are still operating from this is the place where time stopped. The developmental assessment is a piece that can be really helpful in gaining a clear picture of what all is going on for the child in question.

This can also be helpful when looking at transitional 18 to 25-year-old adults, and even older adults. Think through with them and reflect individually as practitioners on what are some of those things that we are seeing, interpersonally, cluster with this client. What are the things that we see that they're doing really well in? What are the things that seem to be a consistent struggle? What might that help us understand about their early experience? 

Developmental Assessment

Structured Developmental Assessments

• Provide clear questions/answers to milestone achievement
• Are often set up to be self-report by parents
• Are easily used by clinicians who are newer to work with children or who don’t see children on a regular basis
  • MCHAT (Assessment given at age 2 to identify symptoms of global developmental delays)
  • ASQ & ASQ-SE (Self-report screeners that identify delays in gross motor development and in social-emotional functioning
  • PSC-17 (Self-report that identify symptoms of attention difficulties, anxiety, depression, and interpersonal struggles)

The assessment piece can be done in a couple of different ways. Structured developmental assessments are helpful if you're in something other than a clinical kind of practice. This can include if you are in a situation where you're doing integrated care or providing services, like an addendum to some kind of medical setting, or if you are providing some level of case management or case consultation and don't have time to sit and do a super thorough assessment.

Structured developmental assessments will give you pretty clear questions and answers to whether or not milestones have been achieved, and are generally pretty quick to complete. Most of them are also set up to be self-report by parents. Thinking through if you're in a medical model, these can be included in typical intake packet paperwork. They are just checked off, somebody reviews them, and in three to five minutes you've got a pretty good idea of what's going on with this child and family and in their world. They are also much more easily accessible for clinicians who don't see children on a really regular basis, or who are newer to the use of development as an assessment point. 

There are a variety of structured developmental assessments that are available. A few to consider are listed below. Some of those structured developmental assessments, like the MCHAT, and the PSC-17 are public domain and are free to access.

Pediatric Symptom Checklist (PSC-17)

The Pediatric Symptom Checklist (PSC-17) has 17 questions. They always sound official, but they are not nearly that intimidating. It is a self-report and identifies a pretty broad range of symptoms that might be present in younger kids. It looks at everything, from attention difficulties and anxiety and depression, to interpersonal struggles and academic achievement, the whole nine yards.

Modified Checklist for Autism in Toddlers (M-CHAT)

The MCHAT is an assessment that is generally given to kids between about 12 months and four years of age. It looks much more into global developmental delays and ruling in or out the possibility of an autism spectrum disorder. Again, it's going to give you a pretty clear cluster of symptoms around object permanency, theory of mind, ability to take perspectives of others, speech and language development, and use of reciprocal language. It’s much less from a perspective of I want and I need, but in questions and looking for conversational response.

Ages and Stages Questionnaires (ASQ & ASQ-SE)

The Ages and Stages Questionnaires required a paid subscription. The ASQ-SE is the social-emotional version of the screener. The ASQ looks much more at fine and gross motor skills, asking questions such as, "Can they crawl? Are they cruising? Do they walk? Can they throw a ball overhanded?" The SE version looks much more at the social-emotional development of the child. Both the ASQ and the ASQ-SE are self-report and are to be completed by whoever the primary caregiver is. They both give a thorough perspective among multiple domains. The ASQ and ASQ-SE both also shift by six-month age ranges, so that the questions, and what they're looking for in regards to what children can do, are going to consistently shift. That says this child should now be at a different level. We should have different responses now than we would have a year ago. Not the same set of questions, not the same set of answers. Those are really good places to begin some foundational assessment around development, and to also begin to expand understanding for us, as providers, of what we're looking at, and how to utilize that as a point of intervention. 

Unstructured Developmental Assessments

• Allow for observation to be the primary method of data collection
• Allow for observation of parent-child interactions
• Require the clinician to be well versed in the administration of the assessment
  • Marshack Interaction Method
  • What to Look for In Relationships? Assessment
  • General observation of the child or child & parent

There are also unstructured developmental assessments. These provide their own set of strengths and areas of awareness. Unstructured developmental assessment means that these are not a screening tool. They don't have a series of questions that can be completed in the self-report format and they take much longer than about five to 10 minutes to complete. These do allow for observation of parent-child interactions. It is much more that the clinician is looking at some kind of observation with a specific lens, looking to see certain markers, positive or negative, and the awareness comes from the clinician’s perspective and is not so much symptomology presented by the parent themselves. Again, with screeners, parents are going to be the ones who raise the red flags around whatever is being asked. With unstructured developmental assessments it does require that the clinician in question be well versed in the administration of that assessment. They really need to know what it is that they're going to layout for this family, and they also really need to know what they're looking for and looking at. For example, when children or parents engage in a certain way or when there is a response in a certain manner, there should be an awareness by the clinician that this is an area of concern, or this is a real strength within this place of attachment relationship. 

There are a variety of these unstructured developmental assessments. Some of them are almost observation of free play among a family. The What to Look for in Relationships? Assessment is a guide for some of those free-play interactions to have a list and say, "Okay, these are the things I saw. These are the things that I'm looking for."

There's still some level of structure in the idea of having a containment, or some type of activity that has the possibility of creating good observable material, as is the case with the Marshack Interaction Method, or with the Krol Assessment. Both of those have a series of identified activities that are to be completed by the parent and child together which allows a clinician to look at specific things. Those include a parent’s capacity to understand a child's developmental perspective, a child's capacity to follow directions, a parent's capacity to set expectations appropriately and follow-through, and being able to give and receive nurture among a dyad. Those are structured in the sense that they're not just a general observation of free play, but they are not structured in, again, the actual clinical material comes from the clinician's assessment and not from parent or child report. Oftentimes when we look at these unstructured assessments on the front end it can make you wonder, “What could we possibly see in such a short amount of time?” or, “How could such a question elicit any real kind of information?” 

Marshack Interaction Method (MIM)

The Marshack Interaction Method is the one that I use most frequently. When using the MIM, you select five activities from a variety of domains. Then you allow the parent and child to work through them untimed. It is up to them how long it takes, what they do with it, and where they are headed. One of the cards that I frequently pull is that a parent will show a child something that they don't know. That's all it says. The card says, "Parent will teach a child something they don't know." This is always a very curious thing to observe. Sometimes we get parents who decide they're going to teach kids how to play hopscotch or that they'll teach kids how to draw a circle. One time I had a father who taught his three-year-old son how to tie his shoes for 45 minutes. We don't generally have the fine motor skills to be able to tie shoes until we're right around five. The expectation for the activity was a little off to begin with. Then, consistently maintaining the activity for 45 minutes was far beyond what was developmentally appropriate for a three-year-old. This simple prompt allowed me to see clearly that Dad's expectations of what this little boy could do on a daily basis created a lot of frustration for this kiddo, and resulted in further conflict between he and Dad. 

They do require that the clinician know what you're looking for and have a good history of using development as a place of assessment. It’s also important for the clinician to feel really comfortable in that role of observing and making inferences from the material that is seen. They can be really rich, in that there's a depth to them that you don't get out of structured assessments.

Developmental Assessment in Intervention

• Using developmental tools can assist in identifying areas to target for intervention in clinical work.
• These assessments can also be reflective of the age in which development slowed as a result of trauma.
• Many early childhood trauma intervention models assert that optimal functioning is gained by scaling back expectations and clinical focus to target the social-emotional age of the child vs. the chronological age.
• Use of structured and unstructured assessments can assist in identifying the social-emotional age of the client.
• Dialectical Developmental Psychotherapy leverages that adjusting expectations/interactions to the social-emotional age allow children to “catch up” to age-appropriate expectations more quickly.
• ost parents can quickly and accurately identify level of functioning through the exercise of “Stop acting like a ____-year-old.”
• Assisting families in identifying appropriate expectations for the identified social-emotional age
• Bruce Perry’s Neurosequential Model utilizes a formalized assessment to identify the areas of the brain where development is “stuck”
  • Promotes use of a variety of interventions from a developmentally appropriate approach
  • Emphasizes the idea of “regulate, relate, respond”
  • Encourages interventions that “wire together”-such as engaging in sensory activities while engaging in talk therapy
• A variety of other trauma interventions can be well utilized when combined with developmental assessment

All of those things then allow us to identify where the areas are that might need intervention in clinical work. Again, back to that example that I gave about the dad and the little boy. It was quite clear that one of the places we were going to start was some general psychoeducation around child development. It was important to talk through with Dad and say, "What is it that you're hoping for him? He worked really hard and you worked really hard. You both got really frustrated. What is it that you want him to learn in these places? What are you hoping for him in the future?" It does help in goal setting, being able to identify those points for intervention, but also, again, with when we think about adults and adolescents. 

When we are looking at the developmental perspective, if we are seeing consistently that this child cannot hang up their clothes, has bleached three loads of laundry, and has been in fights with peers at school six out of the last seven school days, then we are going to look back and say, "What things are we doing well?" For example, what age are we really functioning at? It’s the idea of identifying kids from their place of social-emotional maturity, rather than their chronological age and looking at where their birth certificate says they should be. When we are able to pull back and recognize that this is where we're functioning and use that as a point of intervention, then we will really see shift in developmental change pretty quickly in that area.

These assessments can also be reflective of the age in which development was slowed due to trauma. Many times, we will have this piece with developmental assessment where everything feels like this 30-year-old is still 16 and still functioning in this place as though we're in high school. Sometimes there may be a red flag in the back of our head that helps us go back and ask questions such as:

• Tell me about what high school was like for you.
• Tell me about what you did on a day-to-day basis.
• Who were your peers?
• How did you engage?
• Where were you in the social system that existed at that point?
• What were your goals?
• Who did 16-year-old you think that 30-year-old you would be?

Those assessments also help us to open up potentially where trauma might be that people aren't readily recognizing. That happens frequently and we will get individuals who say, "Yeah that happened, but it wasn't a big deal." Or, "I thought that happened to everybody." These assessments really can open up and create conversation where it didn't previously exist. In that place, many early childhood trauma intervention models assert that the optimal functioning for a child will be attained when we scale back the expectations to meet that place of social-emotional age versus the chronological age. 

Dan Hughes' work with Developmental Dyadic Psychotherapy looks at that. Bruce Perry's work under the Neurosequential Model talks about identifying where within the brain and where within the social construct children who have had chronic exposures to pretty intense trauma really do engage. For example, what's the level they're functioning well at? What is the point when we pull back the expectations to where they have been successful and then build scaffolding, or supports around them to move forward? At that point kids will make success quite rapidly. However, I'm sure if you've ever been in a room with an eight-year-old and the expectations are beyond what are within the capacity to be accomplished by that child, frustration ensues. Then everybody gets frustrated. The kid's frustrated because they can't do it and the caregiver's frustrated because they won't do it, and now everybody's in a standoff.

Being able to recognize that the internal part of this child, or adolescent, or a 30-year-old is functioning very differently than the external body of this individual can make a considerable difference in the way we approach a case, but also in the long-term outcome for that individual participating in services. Again, this shows how the use of structured and unstructured assessments can really help us in identifying that social-emotional age of the client. 

As I previously said, the ASQ and the ASQ-SE are really good at that. If you can find the place within those ASQs we're really starting to fall behind developmentally, then you can go back to the earlier editions. For example, if we didn't do well at the 60-month assessment, what do we look like if we scale back to the 36-month? Are we successful at that point or do we need to go back to the 30-month? Where is the point in those structured assessments that says, "Oh, here's where we were successful." In unstructured assessments we can often see frustration in kids faster than the caregiver because we are not in it in that moment. We are not talking, we are not playing, and we are not juggling multiple conversations. Our sole goal in is to watch and to see what there is that maybe hasn't been seen so far.

We talked about Dan Hughes and the Dialectical Developmental Psychotherapy, but Bruce Perry's Neurosequential Model has a similar approach, that adjusting the expectations really allows for kids to catch up. I always tell families that if we're functioning like we're 18 months old and we're four, it's not going to take the same amount of time to catch up, as if we were actually 18 months old and have to get to being four. We go back to that analogy from earlier about packing suitcases in Erikson's Developmental Stages. Sometimes there's some stuff already in that suitcase. We missed a couple of really big pieces. Maybe somebody managed to forget a left shoe. That's going to be hard. You can't go hiking without both of your shoes, but we're not going back looking for both of them. We're not going back looking for everything. We're going back to scale back expectations to create an environment where we can then pull together the things we did pick up along the way and catch up much faster. 

One of the ways that I'm able to get a preliminary sense of this is to ask parents and caregivers, "How often do you find yourself fussing at this child and saying, ‘Stop acting like a ___ year old’?" Most caregivers can fill in that blank pretty rapidly. "Oh, I swear he's two” or “I'm telling you, there are times that he is five and I don't know how we have gone from 14 to five in three minutes." Then they will tell you that there is something within them that resounds to the idea that this child's social-emotional development is stuck at a certain place. They know that there is a place where they are successful, where they are continuing to engage from a specific perspective over and over and to the point of lots of frustration. It’s important to work to help families and caregivers and support relationships to identify what's appropriate in thinking through scaling back to the child’s social-emotional age. This is hard. Clinically, I get a lot of pushback around it. To say, "Yes, I know this child is nine, but he acts three and so I'm going to ask that we scale back expectations to as though he were three."

Parents get really wary. I use the term parents loosely here. Sometimes it's biological parents, sometimes it's a kinship placement, it could be foster parents, or it might be a caregiver that they've lived with forever. Whoever that primary person is often says, "My frustration is that they're not mature enough and you want me to treat them like they're younger?" We have to talk through and hold this frustration and conflict that they're experiencing and discuss how we get to a place where decreased frustration and decreased conflict results in decreases in cortisol and better capacity for our neurology to learn. We want parents to have this goal. The goal may be for them to be independent and have friends and go on a playdate. For some of my kids a win would just be getting an invitation to a birthday party.

It's also the clinical hat use of negotiation around helping families identify what they are willing to scale back. Some families will also say, "I'm not doing that." So, how do we say, "Okay, I hear you. You are not willing to reset expectations on that, but where can we do that?" We ask and hope for a really broad range answer. 

I had a 14-year-old who was adopted from a country internationally when he was 12. That was a really big shock for him, not only from a developmental perspective, but also from a cultural lens of going from a place and a country that English was not his predominant language and things were dealt with much differently, to being placed in a home in a rural community where everybody spoke English and everybody looked alike. There was an assumption that everybody did things the way that this community did. One example is this 14-year old, who acts like he's three, and needs a bedtime routine. If he were three, he'd have a bedtime routine. Another example is my 11-year-old who has a history of cancer. He had lots of time in hospitals and exposure to chemo and radiation. If you just hand him a toothbrush and toothpaste he's going to brush his teeth for about 30 seconds, and he might actually brush three of them. We have to stand there and make sure he brushes, spits, rinses, and does his mouthwash, as though he were five, because that's where we're at.

When we can shift those expectations, as controversial as it often is, we'll see parents’ frustration drop and kids’ frustrations drop. When the relationship has an opportunity for connection and positive mutual regard, then people are suddenly willing to do things for each other. Kids will say, "All right mom, I'll go take care of that" or, "Okay, Grandma, I got that for you." Now we can start to make progress in some of those areas where we've expressed frustration about lack of responsibility, lack of maturity, and lack of follow-through. 

Bruce Perry's Neurosequential Model is a much more formalized assessment on identifying chronological age than those examples that I gave earlier. They do a pretty thorough assessment around obtaining medical records, academic records, and looking at EEGs. It's like a full medical workup where they create a thorough brain map and can pinpoint exactly where development got stuck and what areas are doing really well and what areas are lagging behind. It's a pretty impressive model in being able to quickly conceptualize that level of information and provide it to clinicians to really look at how does this impact intervention? How do we make those shifts in our clinical decision making? Then we are able, generally, to catch up and make progress more quickly, because we are targeting both the pieces where the brain is strong and the pieces where there is weakness. This is a model you have to be trained on independently and you have to pay for it. It's not really a thing you can just read a book and do.

While it identifies that the brain is stuck, one of the pieces about the Neurosequential Model is that they promote, from a clinical lens, a pretty wide variety of clinical approaches. They may say, "We're going to have to tweak this to meet the developmental needs in this section of the brain." But you can use Trauma-Focused Cognitive Behavioral Therapy (TF-CBT), Eye Movement Desensitization and Reprocessing (EMDR), child-parent psychotherapy, whatever it may be, we're just going to make some adjustments and accommodations. 

They really are complimentary to multiple kind of approaches to trauma and trauma treatment. In that place, the Neurosequential Model also emphasizes the idea of regulate, relate, and respond. Throughout all trauma approaches hold this idea that we don't do trauma work until we are calm. We don't do trauma work when we're in the middle of trauma. From that, the adage within the Neurosequential Model is we have to be able to teach kids how to regulate themselves, we have to have them in a regulated place, and then we build the connection, we engage in that place of relationship, we engage in relating between caregiver and that child, or partner and the other partner, clinician and that identified client. Once that person is regulated and we have engaged in relationship building, then we can respond. Then we can say, "We are going to take some deep breaths. I know that you are so sad and I see your tears. You know that I care about you. You cannot go swimming outside. It is 50 degrees." We can give that hard information that is the piece that kind of pushes boundaries with that child, or family, or individual in this process of regulate and relate and respond. These are the other pieces we talked earlier about that neurologically things that wire together fire together.

The Neurosequential Model pulls a lot on that concept and tries to pair interventions that wire together. Remember, we talked about the map where they look at places where the brain is really strong and places where muscularly it's really weak. They will say, "Use this thing that's strong. We know that the part that really is attracted to music in this brain is a big deal so let's play some music and talk about feelings at the same time." We are going to use what's strong and what's really weak and be able to pair those two together, because when they can wire together, then they'll fire together. From my perspective, this really allows for the creation of some pretty creative intervention models. I think that it is also really fun to be able to just look at those places and be able to pair things together.

You can really use a variety of whatever your preferred clinical approach is and consistently hold in the back of your mind overlaying this piece of what does development tell me about what may be going on? What does developmental assessment tell me about where I might best make my move, make a commitment, or shift my intervention just slightly, in hopes for kind of a better grasp from that client and improved long term outcomes?

References

Bruce, D. P. (2009). Examining child maltreatment through a neurodevelopmental lens: Clinical applications of the neurosequential model of therapeutics. Journal of Loss and Trauma, 14(4), 240-255, DOI: 10.1080/15325020903004350

Campbell, C., Roberts, Y., Snyder, F., Papp, J., Strambler, M., & Crusto, C. (2016). The assessment of early trauma exposure on social-emotional health of young children. Children and Youth Services Review, 71, 308-314.

Choi, K.R., & Graham-Bermann, S. A. (2018). Developmental considerations for assessment of trauma symptoms in preschoolers: A review of measures and diagnoses. Journal of Child and Family     Studies, 27, 3427-3439.

Davies, D. (2011). Child development: A practitioner’s guide. New York: The Guilford Press.

Denton, R., Frogley, C., Jackson, S., Jphn, M., & Querstret, D. (2017). The assessment of developmental trauma in children and adolescents: A systemic review. Clinical Child Psychology and Psychiatry, 22(2), 260-287.

Frankel, K. A., Harrison, J. N., & Njoroge, W. (2019). Clinical guide to psychiatric assessment of infants and young children. New York: Springer International.

Harel-Gadassi, A., Friedlander, E., Yaari, M., Bar-Oz, B., Eventov-Friedman, S., Mankuta, D., & Yirmiya, N. (2018). Developmental assessment of preterm infants: Chronological or corrected age? Research in Developmental Disabilities, 80, 35-43.

Hughes, D. A. (2000). Facilitating developmental attachment: The road to emotional recovery and behavioral change in foster and adopted children. Maryland: Rowan & Littlefield.

Kisiel, C. L., Fehrenbach, T., Torgersen, E., Stolbach, B., McClelland, G., Griffin, G., & Burkman, K. (2014). Constellations of interpersonal trauma and symptoms in child welfare: Implications for a developmental trauma framework. Journal of Family Violence, 29(1), 1-14.  https://doi.org/10.1007/s10896-013-9559-0

Phua, D., Kee, M., & Meaney, M. (2020). Positive maternal mental health, parenting, and child development. Biological Psychiatry, 87(4), 328-337.

Weitzman, C. (2003). Developmental assessment of the internationally adopted child: Challenges and rewards. Clinical Child Psychology and Psychiatry, 8(3), 303–313.

Zeynel, Z. & Uzer, T. (2020). Adverse childhood experiences lead to trans-generational transmission of early maladaptive schemas. Child Abuse & Neglect, 99.

This text-based course is an edited transcript of the webinar, Providing Support to Families of Children with Hearing Loss, presented by Jane Madell, PhD, CCC-A/SLP, LSLS Cert. AVT.

Learning Outcomes

After this course, participants will be able to:

• Explain effects of hearing loss on families and the support that parents need when a child has hearing loss.
• Explain key components of support groups for parents of children with hearing loss, and of support groups for children with hearing loss.
• Describe ways professionals can help children with hearing loss and their families to advocate for themselves about issues related to hearing loss.

 

Effects of Hearing Loss on Families

Jane Madell: When I started my career many years ago, newborn hearing screening was not in effect, as it is today. Hearing loss was not identified in children until their parents noticed that they were not developing speech and language. Parents already had a relationship with their baby when the diagnosis of a disability was made, but that's not the case anymore. Now with the advent of newborn hearing screening, babies are identified with hearing loss at birth, so families do not develop a bond with their baby before they get the information. They don't have time to recognize that something might be wrong. Ninety-five percent of children born with hearing loss are born to families with no family history of hearing loss, so parents are stunned when they get this information. They do not know anything about hearing loss. If they know anything about hearing loss, it is usually some like a grandparent has age-related hearing loss and wears a hearing aid that they dislike. They really do not know what to expect or how to proceed. Parents need help accepting that there is in fact a hearing loss. They need help understanding that hearing loss is a manageable disorder, that if we do what we need to do this child will have a positive outcome. We can only help them understand that if we absolutely believe that ourselves. 

We also need to discuss what needs to be done in terms of medical evaluations. Additionally, technology is an important area to discuss with parents. We need to help them accept the fact that the child will need hearing aids or other amplification, and talk about the value of an auditory-based therapy program. We also need to tell parents what all the options are, and to be honest about those options. Parents need to know what kind of language a child will develop if they have one kind of therapy, if their parents choose one communication mode versus what happens if they choose a different one.

When Do Families Need Support?

I think every family of a child with a disability, and that includes hearing loss, needs support groups to help them feel that they are not alone in this situation. They need support groups in the beginning when the child is first diagnosed, as parents are so overwhelmed. A support group can help them meet other families who have recently been through it and are a little further ahead, so they can feel like they are not alone in this world. Parents may also need support groups when a child's technology is changed. If a child wears hearing aids and needs to move to cochlear implants, that can be traumatic and parents may need help. They need help when a child needs cochlear implant (CI) surgery. Parents may need support when the child is starting school or changing schools; those are times that are stressful for most families and especially for those with a child who has hearing loss. When there are major life events like Confirmation, or Bar or Bat Mitzvahs, families want to know if their child with hearing loss will be able to do those things. At those times families may need a little more support either from professionals or from other families.

How Do We Provide Support to Parents?

Most hearing loss is identified at birth, and there are significant advantages to that. Children can be fit with hearing aids a few weeks after birth and start therapy early, so that language delays can be minimized or eliminated.  The child's listening age will be the same as their chronological age, or very close. When I started in this field, we didn't know the kids had hearing losses until they were between 18 months and two years of age, so their listening age was two years behind their chronological age. That makes a big difference in the way they develop language and it makes a big difference in the way that families feel about their children. The disadvantage of early identification of hearing loss is that the parent didn't know and love the child before getting the information that the child had hearing loss.

Support Groups

Scheduling parent and family support groups can be challenging. If children go to a center where a lot of children have therapy, then we can schedule parent support groups during therapy times. There are several families at once who are together at the same time and having therapy. If we schedule support groups in the evening, parents who work can be involved. In some cases afternoons may be better or weekends may be better.  It may be a group that meets weekly, monthly, or occasionally at whatever intervals are best for the group so that families are able to attend and participate.

The advantages of a support group for parents of children with hearing loss or other disabilities is that it enables parents to communicate with others who have been through the same experience. The audiologist, physician, speech language pathologist, and auditory verbal therapist may know a lot about hearing loss but most of us have not been through the experience of having a child with a hearing loss. We know some things, but we don't know other things that a parent who is living it can know.

There are different ways to compose support groups. Topic-based groups are centered around a specific topic. For parents who are very busy, they're more likely to take time out to go to a meeting that is focused on a specific topic than one that is focused on themselves. They may want to learn about how to improve speech and language, how to get their child to do something, how to transition or pick a school, etc. When planning a group, you need to consider what is going on with the families and what kind of group would be most beneficial to them. There are groups for parents whose children were newly diagnosed, and groups specific for mothers or fathers. Even today, mothers and fathers often have different concerns about their children. Mothers may have more social concerns, and fathers may worry about what will happen to this child as an adult and will they need long term care (which is not usually the case).  There are also grandparent groups. Grandparents have a particular interest in how children are doing and how they are developing. Support groups for grandparents help us talk to grandparents about their role. Sometimes grandparents can be a benefit and sometimes they can be a difficulty. I have had grandparents who told the parents that when they were babysitting for a child with hearing loss, the grandparents didn't want the child to wear their hearing aids. That is obviously a problem for speech and language development, as hearing aids should be worn during all waking hours. There are other grandparents who just assure parents that everything will be OK but do not make any effort to support the family's goals for that child. If they are people who are caring for children on a regular basis, that's something we need to work on. It is also important to have sibling groups. Siblings of children with disabilities really struggle. The child with the disability gets an enormous amount of attention from the parents, and sometimes other children feel overlooked. They may not really be overlooked, but siblings need a little support. And for the child with hearing loss, support from other siblings is sometimes very helpful.

Informational support groups may focus on technology, school, or dealing with other family members. And then there are support groups that deal with emotional issues. The groups for mothers or fathers, mixed groups, siblings groups, and grandparents groups can all deal with emotions.

Basic Information about Technology 

It is critical to have basic information about hearing technology when working with families of children with hearing loss. Here are some important things to know: 

• Hearing aids work well for children with mild to moderate hearing loss. 
• Cochlear implants work well for children with severe and profound hearing loss. Before children are considered for a cochlear implant they will have had a trial period with hearing aids.
• Some children with moderately-severe hearing loss will do well with hearing aids, but others will need cochlear implants.
• All children with hearing loss will need a frequency modulation (FM) system in school and in other listening situations where there is background noise. An FM system is a wireless system that transmits sound directly from a sound source (such as a teacher's microphone) to a receiver (attached to the child's hearing aids or cochlear implant).  As children get older they may not want to use an FM system, but if they do not they will have difficulty hearing people in school who are more than three feet away.  More information on FM systems can be found here.

 

Supporting the Child with Hearing Loss

Figure 1 shows the child in the center of the figure, and all the people who are critical in supporting the child to be successful. These include the family and extended family, the educational audiologist, the clinical audiologist, the physicians, and the speech-language pathologist. Social workers, psychologists, and educators are critical people in this child's world. We need to be sure they are all communicating with each other if this child is going to succeed.

Figure 1. The support network for children with hearing loss, with the child at the center. Copyright 2019 Jane Madell, www.janemadell.com.

Roles of Different Practitioners

Here is a short summary of the roles of the different practitioners in the support network for children with hearing loss:

• Audiologists: Diagnosis of hearing loss, evaluation and management of technology, counsel parents and children about the effect of hearing loss, help school staff understand how to manage a child with hearing loss.
• Speech-Language-Auditory Pathologists/Listening and Spoken Language Therapists: Evaluate speech-language-auditory skills, develop treatment plan for building skills, provide therapy, monitor progress
• Physicians: Medical evaluation and treatment
• Educational Psychologists: Psycho-educational evaluations to identify learning issues
• Social Workers: Counseling and support for families and children

Client-Centered Counseling

Client-centered counseling puts the client in the middle of the procedure. Counseling that tells the family what we think we should do is not always in the family’s best interest. This does not always work well because it does not empower families to build their own skills to move forward.

Client-centered counseling in the diagnostic process begins when we first have contact with the family. If a hearing loss with the child is identified at birth, parents do not have a lot of information about the baby to share. But if a child is diagnosed later, then there is information that the parents can tell us about what they see at home and what a child is hearing. At this stage, it is important to let parents share their feelings about what they have seen and what they are observing about their child. They need to be allowed to tell their story to determine what they have seen and what they suspect.

Parents as Co-diagnosticians

It is important to involve parents in the diagnostic process. In audiology, we can sit the parent in the test booth with the child so they can see everything that is happening. That helps diminishes the denial mechanism of, "I'm sorry, I just don't believe he has a hearing loss" because they are in the room with the child. It also builds confidence between the parent and the clinician because the parent can see how the clinician is making a clinical judgment about whether the child has a hearing loss. 

It is also important to include parents in speech and language evaluations that determine whether the child has a speech and language delay. Research shows that parental satisfaction with testing children who fail newborn hearing was a function of how empowered the parents felt in participating in the process. Parents have such a vital role because clinicians do not spend all that much time with children. What we do is important, but parents make the decisions about acting on our recommendations and how they are going to follow up.

In order to involve parents actively in audiology test procedures, we engage them as much as possible in seeing responses. When I am testing children in the sound booth, I involve the parents in watching the child’s responses. If we are doing an auditory brainstem response (ABR) testing, we can position the parents to see the equipment screen, so that they can see when there is a change in response. 

When parents participate in the diagnosis, they are more likely to accept the diagnosis. They can see responses in behavioral testing, the ABR testing, and otoacoustic emissions testing (OAEs). We can let them observe what the child responds to with and without technology, and that helps them accept what the child is hearing. With corroborative testing in the sound booth, we can have one parent sit with the child and have them point out responses. If there are two parents, we can have the other parent sit with the audiologist and have them describe what they see and what they think. In speech-language evaluations, let the parent observe testing and comment on performance. Parents are often surprised when their children show language deficits because they do not see the child the same way we see them. The parent is working with the child alone, but they may not delving into difficult language situations, such as complex wording. When a speech-language pathologist does an evaluation and the child is making errors, it helps if the parent can see the errors because that helps them understand what they have to do at home. 

Listening Bubble by Karen Anderson

It is important that families understand the Listening Bubble concept that Karen Anderson developed some years ago.

The Listening Bubble refers to the range of hearing within which speech can be fully heard. The Listening Bubble can be used to describe hearing loss in terms of how far away a child can be to fully understand someone speaking. A person with hearing loss has a smaller listening bubble than someone without hearing loss.  For example, a child with normal hearing will hear you speaking at an average volume level from 10 or 15 feet away, but a child with a hearing loss may not hear or understand from that distance. When we describe to parents and families what a child can hear, it is very helpful to talk about a listening bubble. It explains why a child with hearing loss may hear loud sounds but not soft sounds, or may hear when you are close to them, but not when you are far away. The listening bubble gets even smaller when there is competing noise in the environment. When there is noise in the environment, it will be more difficult for a child with hearing loss to hear and understand.

Different voices can be easier for a child to detect. A father with a low-pitched voice may be easier to understand than a mother whose pitch may be higher as hearing loss is often greater for higher pitch sounds.  In this case, we can explain that the child’s listening bubble is bigger when her father is speaking and smaller when her mother is speaking. The concept of the listening bubble is also very useful for children to help them understand their own hearing loss.

Another concept that is important when working with children with hearing loss is speech understanding. Speech perception testing is usually described in percentage, but not all people understand it. An audiologist may explain that a child has 88% word recognition ability, but what does this mean to parents? Some people have found it is easier to describe it in terms of pieces missing from a puzzle. Imagine looking at a jigsaw puzzle that is put together but has several pieces missing. For example, if you have a 100-piece puzzle and you are missing 12 pieces, you don’t see the entire picture.  This analogy may be helpful for families in understanding speech perception testing scores.

The Counseling Role Following Diagnosis

Regarding counseling after diagnosis, all decisions made for a child are based on parent choice. They will decide whether the child will wear technology and what kind of communication mode a child will participate in. Therefore, we need to provide parents with information that will help them make educated decisions. We need to help parents become empowered because they need to feel that they can make a decision for their child and follow up on it.

I ask families about the goals for their child. Where do you want them to be when they are five, and 10, and 15, and 20? Almost every parent says that they want their child to be able to go to school and play with other kids. I ask them about what they think it will take to get them there because if they want their child to go to school, they need to be able to develop good listening and spoken language. We need to be honest when describing all the options because we have different expectations for children who are in an auditory program versus children who are in a signing program, and we need to talk to families about what those expectations are. We are not saying that one is better than the other, we are just being clear about what you will expect in terms of one program versus the other.

This question always comes up: how much should we answer for a family? This is common with cochlear implants and when parents are trying to decide about a communication mode. Parents may sometimes ask us, If this was your child, what would you do? This is a trap we need to avoid. For example, if I say if I were deciding for my own child, I could choose a cochlear implant, then parents want me to decide which cochlear implant. We cannot do that because that sends a message to the parent that they are not competent enough to make decisions for their child. We see successful outcomes by making sure that the family is making the decisions. Families do not learn to become responsible for their decisions if they do not make them for themselves.

Here are some questions that are useful counseling tools:

• I can see that you're having a hard time with this decision, can you tell me why this decision is difficult for you?
• Do you have questions I can answer to help you make this decision? 

​Let the parents talk through the answers to these questions. This can be difficult for them, but it is important to have the parent make the decision in their own good time. We also need to routinely and actively engage parents in dialogue about the goals for their child and what they have to do to carry over those goals. What do they have to do at home? We need effective dialogue to help them become knowledgeable about what it takes to succeed. What is the parent's role if they choose? For example, what is the parent's role if they choose sign language? We need to help them be familiar with normal speech, language, auditory, and cognitive development. It is essential that we listen to the parents. This is a stressful time for them and we need to arrange for parent support. Parent-to-parent support is effective because those who are a year or two ahead of a newly diagnosed family are in a different place. The initial panic is over and they have a child who they see is progressing, and can help newly identified families be optimistic. Validating parents’ feelings is also critical when working with families.

Support When Considering Cochlear Implants

When a child is not doing well enough with hearing aids, professionals may have to make the decision to move on to cochlear implants. Moving towards cochlear implants can be traumatic. That is difficult for families of newborns, too. If we know the baby has a profound hearing loss, we know we are going to have to move onto cochlear implants right away. But for a child with a moderately-severe hearing loss who starts out making progress but then progress slows, talking about cochlear implants can be very hard for families. It is always stressful for parents when they have to think about surgery for their baby. We need to help parents understand what kind of benefit the child will get if they choose an implant. You may need to explain that hearing aids are not working well enough and show them what we expect from children with cochlear implants.

Having parents meet children with cochlear implants is very helpful. Speech-language pathologists can demonstrate why the speech and language skills are not progressing at a sufficient rate and social work services can help families develop realistic expectations and provide emotional support. We cannot expect a child without speech and language to be speaking in three-word sentences two days after surgery.

Even when we have explained about realistic expectations with parents or older children, they may not believe us and think everything will be perfect from the beginning with cochlear implants. Sometimes that is a problem.  Families and children need to understand that it takes time to build skills and that a CI alone doesn't provide magic benefits. Children still need auditory-based therapy and mapping of their cochlear implants on a regular basis. 

Support for Children 

Children with hearing loss are, for the most part, educated in mainstream school settings: 85% of children with hearing loss are educated in the mainstream. The advantages of mainstream education are that the kids have normal language models and the school has normal developmental, academic, and social expectations, so the kids have a better opportunity as adults because of their language skills. The disadvantage is that they are often the only child with a hearing loss in the school and have no contact with other children with hearing loss. That is a problem because they have difficulty hearing in school and may have questions about management of their hearing loss or technology. If their language skills are not at typical hearing levels, children with hearing loss will have limited social opportunities. 

Support Groups for Children with Hearing Loss

Children who are a part of mainstream activities are in a situation where they have better academic and language models but feel isolated, and their friends often don’t understand the issues of hearing loss. If they go to someone's house and have a sleepover, they take off their technology to go to sleep and they cannot hear anything that is happening. As they get older, social issues become more significant. Children in special education classes may feel less isolated but have lower expectations. They may need assistance dealing with people outside of school because they don't have language skills that enable them to do that.

Counseling Children with Hearing Loss

Children need both informational counseling and support counseling. We do not always think that we need to provide the same kinds of counseling to children but we need to do that as soon as the children are ready. Social skills are dependent on language age. Children socialize well with other children as long as they have the language to communicate. They may do really well in preschool through first grade. By the middle of second grade, if their language skills are not equal to their peers, they are going to start having socialization problems because they cannot follow games being played or participate as much in discussions. 

By the age of eight or nine, children begin to recognize that they are different. As children get older and are more aware of their hearing loss, they begin to resist things that can help, such as wearing an FM system or other hearing technology. Some resist going to therapy or decide they are not going to wear their technology. Children with disabilities are also more likely to experience bullying, and it is the responsibility of all of us who work with these children to check in and see if they are having these problems. When a child comes in and says they want to take off their FM system, the first thing I wonder about is whether they are being bullied. We need to think about ways we can help children deal with being bullied, so we counsel children as they are ready for it.

In terms of topics to cover in counseling, children need to understand the degree of hearing loss and it means. They need to understand hearing technology and why they have a hearing aid or a cochlear implant. We need to give them an opportunity to talk about their feelings towards having a hearing loss. It is not fair and I am sorry this is happening to you, but it is happening and we have to do some things to fix it. We need to help them talk about the social issues that are related to hearing loss. What kind of problems do you have and what can we do to fix it? We also need to help them build self-advocacy skills so they can ask for help. If they do not understand something one of their friends is saying, they need to be able to say, “I didn't hear that, can you say that again?” They also need to be able to say that to teachers at school. But we also need to give them permission to feel bad about the fact that they have a hearing loss and are in a situation they do not want to be in. 

Counseling Older Children with Hearing Loss

When we test a child who is old enough to understand, we need to describe to them what they are hearing with and without technology. It is important to discuss how this affects everyday listening. If you have an audiogram that has all the phonemes on it, you can help them understand which phonemes they are missing without their technology. We also need to talk about the difficult listening situations they have and how technology can help.

We need to be careful about how much information we provide. We need to determine what the child wants to know and what they are ready for at that time. We say, “Tell me what you want to know about your hearing loss.”

These are questions that children may ask:

• When will I be old enough not to need hearing aids?
• Will my hearing loss go away?
• Will my hearing get worse?
• What will happen if I don’t wear hearing aids?

I once had a six-year-old boy want to know when he would be old enough to no longer need hearing aids. His mom and I looked at each other and realized that we had not made it clear that this was going to be a lifelong situation. We also need to talk with them about their language, as well as their future. I had a middle school student who said he did not want to wear hearing aids anymore and asked what would happen if he did this. I said to him, “Do you want to go to college?” He said yes. “Where do you want to go to college?” He said Harvard, Princeton and Yale, which are good goals. “Okay, let's think about what your grades will be if you're missing half of the phonemes.” So we need to just talk things out. If they ask a question, answer it. Offer the information on a regular basis so they know what we are trying to tell them. We need to talk about why they need speech-language therapy, as well as discuss skills and what they need. They need to know about what can be done to build skills and that hearing helps them learn a language. 

Running Support Groups

With today's technology, most children are educated in the mainstream, but they may not be able to contact other children with hearing loss. It is important for them to have someone else who understands the situation that they are in and give them an opportunity to talk about how they feel. In those situations, there needs to be a moderator that can help them understand, either somebody to type it on a screen or write on a blackboard what the concerns are. Then we can go around in a circle and all make suggestions for how to handle those concerns. I had a situation where a child with a hearing loss was giving up their technology. I could not make a change, but the other kids in the group helped her understand what she was doing if she gave up using technology. They can provide support for each other.

When I run a group, I set it up by age and communication mode. I do not worry about the degree of hearing loss because with whatever technology they are wearing, they should be hearing well and able to communicate. To start the group I ask, "Tell me something funny about having a hearing loss.”  It is often mentioned that a teacher forgot to turn off the FM microphone and the child heard things they were not supposed to hear. Then I suggest that they name five or 10 things that their family and friends know about them. It is very interesting how many of them will say in that list that they have a hearing loss, while others will say that is not something that matters. I ask, “Is there anything good about having a hearing loss?” Some of them say they get more attention from parents. 

Most importantly, I ask about the problems with having a hearing loss. We list all the problems on the board, then have everyone make suggestions. We talk about social issues, including bullying and teasing. I bring those topics up myself if the children do not. Most kids do not want to leave at the end of the hour. It is something that they crave and we need to work on it for them. 

Counseling Issues with Children

A typical issue is fear of parent anger. Children have been yelled at in the past for not hearing or for losing a hearing aid. Parents are concerned about how much hearing aids cost, so the children do not want to tell them if their hearing aid is not working well. There is also ridicule from siblings or other children. The refusal to wear hearing aids happens often, especially with those who have relatively mild hearing loss, and sometimes kids with profound hearing losses who are not doing well. With younger children, rejection of hearing aids is usually the result of parent attitudes, since they can see that their parents are upset about it. With older children, it is usually related to the attitudes of peers. We need to talk to parents about their concerns for the child having a hearing aid and provide them with support, but we also need to help them understand the effects of their child not wearing a hearing aid.

Helping Children Talk About Problems Listening

In order to help children talk about their problems we can ask questions, such as, “Do you only hear part of it when someone talks to you?” Encourage parents to share their concerns and behaviors they have observed under what conditions, and have the child there as well so they can hear that parents also recognize the situation. Mention that we all have problems hearing sometimes, even people with perfect hearing, but then discuss the situations where the child has a problem and see what we can do to fix it. Sometimes that helps families understand that it may be necessary to change technology. 

With older children, if we test their speech perception using the loudspeaker in the soundbooth both with and without their hearing aids and/or cochlear implants, technology, we can demonstrate to them what they are missing. For example, we may find that at a normal conversational level they understand 86% of the words presented and at a soft conversational level, they understand 48%. We may also explain to parents or children that they will not hear unless the person speaking is standing no farther than three feet away, which means they will miss what is happening in a classroom. Audiologists should perform testing in noise as well.  When hearing testing is only performed in quiet, scores are not representative of real world situations. Results of speech perception testing in noise can help to demonstrate how much the child is missing. Remind them that you understand this testing is difficult because we need to let parents and kids express their frustration and anger.

With teenagers, talk about the problem of the pieces missing from the puzzle. Talk about how they are getting new information in school and if they are only hearing part of it, they are not going to learn well. We also need to talk about the fact that hearing loss is fatiguing.  Children with hearing loss have to listen much harder to fill in the blanks that they are missing due to hearing loss, so they are constantly doing extra work. But we also need to make children understand that other students will recognize that something is wrong if they decide not to wear their technology. The effects of hearing loss can be subtle but will be noticed by other students, and it would be better to deal with the hearing loss so that they can hear and communicate. We should also talk to teenagers about the lifelong impact of having a hearing loss. Adults who have hearing loss and wear hearing aids earn 50 percent more during their lifetime than those with hearing loss who do not wear hearing aids and instead try to get by without them. About 30 percent of people in prison have a hearing loss, which may lead to poor choices due to not hearing what was happening around them or not effectively navigating social situations and communication.

Self-Concept

We need to help children deal with self-concept. They may internalize the reactions of others, so when people look at them with annoyance due to their difficulty hearing, it makes the children feel bad. They are not ready to tune out the reactions of people who treat them badly. Children with hearing loss often have a relatively poor self-concept if they do not have the language to compete with their peers. Also, they may have fewer opportunities to interact with peers if their language is not as good. They have less opportunities to practice social rules and may misinterpret interactions. If they do not understand sarcasm or certain idioms, they will not be able to keep up in social situations. It is the job of everyone who is working with the children to make sure that they have the language they need. Hearing aids alone may cause a self-concept problem, since wearing the device may amplify the difference between the child and their peers. Children with hearing loss may have fewer options to socialize especially if their language skills are not at age level. We need to make sure that children with hearing loss have the vocabulary to express their emotions and help them learn to recognize emotions in others.

 

Figure 4. The Child Peer Relationship Scale.

Figure 4 is the child peer relationship scale. With this, there are eight discussion points we ask kids to fill out and then they can check the points. These statements can be about relationships with other kids or their feelings about school. If we get them to just check which best relates to them, we can get a better picture of where they are and what kind of assistance they need. It could be specific therapy assistance, technology assistance, a support group or counseling, and we can get that by looking at these responses. 

We can use the Cappelli "I Start/You Finish" tool as a way of checking in with kids:

• I am happy when____ 
• I am sad when___ 
• The thing I like most in the world is____
• The thing I would change in the world is_____
• Because I have a hearing loss_____

Using this activity, we can get an understanding of where a child is and possibly refer them to a counselor to help them work through these issues. 

There are some self-assessment tests for teenagers that are available on the Internet, including the Self-Assessment of Communication - Adolescents (SAC-A) and the Significant Other Assessment of Communication - Adolescents (SOAC-A). These also provide good information to help us figure out where a child is and what kind of help they need. 

Using Scenarios

We can also do an exercise where we discuss different scenarios. For example, we can show children a picture of a student sitting at a desk and a teacher speaking at the front of the room. We can then ask, “Does your teacher do that? Is it hard to hear your teacher when your teacher is standing in the front of the room? How much of what the teacher is saying do you miss?” It is an opportunity to get kids to talk about these daily situations. Additionally, the Ida Institute has a game where you can set up situations and help children talk about their experiences relative to those situations. 

When we are talking with children, we need to be sure that we are keeping the door open. We need to make sure that the children understand that we hear them and understand that they are struggling. We need to give them encouragement and show that we are listening. For example, if a child is struggling to describe a difficulty, we can say, “I think what you're saying is that you're having a hard time talking to kids in places like the lunch room where it's very noisy. Let's think about what we could do about that.” Acknowledge their feelings, then try to help them solve the problem. Any indication that you are struggling to understand the emotional content of what a child is saying makes it hard for them to go on and say more. It is difficult for people to change if they do not feel like they are understood, so we need to be sure we are making it very clear that we understand where a child is. 

Counseling Missteps 

My colleague and mentor David Luterman talks about counseling missteps. When we counsel families, we need to be sure that we do not give the impression that we have all the answers and they do not. This is a quote of how we do not want to come across: 

“I have all this information and training. You do not. I will help you see it my way.”

It is possible to make this misstep without using these exact words. Presenting yourself this way is not the message we want to give to families. We may know more about some things, but they know more about the child. It is important to have counseling remind families that we are listening to them and that they are capable of coming up with the answers. 

Case Example

In this example, a 10-year-old boy tells the school he left his hearing aids at home, and then tells his family he left the hearing aids at school. 

What can we do to manage this? We have to think about why the child is doing this and what we can do to change the behavior. We cannot get upset with the boy that he is not wearing the hearing aids. We have to talk to him about what's going on and understand that he is most likely upset about the hearing aids if he is refusing to wear them. We can say, “Tell me about this. Is that what the problem is? Is it hard in school? Are kids teasing you? Does it make you feel bad that you have to wear hearing aids and other kids don't? Do the hearing aids help you? What do they help you hear?” We ask questions to allow the child to talk through the situation, as well as how they feel and how they want to move forward. 

 

 

Summary

Here is a summary of key points I have discussed today:

●      At all stages, it is essential that professionals empower parents and kids and help them process the emotions associated with hearing loss. 

●      Involve parents as co-diagnosticians for children of all ages. 

●      Simulations and descriptions using decibel levels and the “listening bubble” are more useful to help families understand hearing loss than labels and audiogram interpretation. 

●      Encourage parents to identify their goals for their child and present them with unbiased information about all options. 

●      Counseling is important for kids with hearing loss. 

●      Hearing testing in noise is critical for older children and teenagers. 

●      Provide fact-based information about the life-long impact of hearing loss with older children and teens. 

●      Give everyone the chance to express feelings. 

●      There are both positive and negative help-giver responses. Resist the urge to rescue! 

Questions and Answers

Will a child with a cochlear implant have difficulty hearing in school without an FM system? 

Yes, the child with a cochlear implant will still have difficulty hearing in school without an FM system. Every child with a hearing loss needs an FM system no matter what kind of technology they are using. When they get to be teenagers, they often reject them, but if we can help them understand how much better they hear with the technology, we are making a big difference. 

At what age do children start to grieve? 

It is about age eight or nine when they first start recognizing they are different that they start to grieve.

Do you recommend hearing loss simulators to help parents, family, and other people understand hearing loss? 

I do not like the hearing loss simulators and only use them when I think parents are really resisting understanding the effects of hearing loss. The reason I feel this way is that I think it makes it sound so much worse than it is. If you listen to a simulator for a moderate hearing loss, parents may start to wonder whether there is any possibility that a child with a hearing loss can learn anything. However, if parents decide that the child will manage without hearing aids, then I will use a simulator to help families understand what it is like to have a hearing loss. But for the most part, I am not crazy about simulators because I do not like the effect they give. But if we can use a simulator, we also need to be able to show what it will sound like with the technology on. 

How can social workers learn hearing loss basics and technology basics? 

Social workers who work in programs for children with hearing loss should develop those skills by meeting with clinic staff, including audiologists and speech-language pathologists.  I think it is easier than trying to read a basic audiology textbook.  

You mentioned support groups for children with hearing loss in school, are there sometimes not enough kids in a school with hearing loss? 

It is usually done by district. School support can be provided if there are several kids in one school, but that is usually not the case. School districts can arrange to have all the kids with hearing loss meet for lunch in one particular school, or have kids with hearing loss meet at the end of the day and have a support group that way. You can also get support groups outside of school. AG Bell, the Alexander Graham Bell Association for Deaf and Hard of Hearing, has a wonderful program in the summertime called Leadership Opportunities for Teens (LOFT). It is a group of teenagers that can meet other kids with hearing loss, and the people who run the group are young adults with hearing loss who have already been through the LOFT program. The kids who have been through it find that they get wonderful opportunities to share their thoughts with other people who have hearing loss.

What are some movie recommendations for kids with hearing loss?

I made a documentary called The Listening Project, with Emmy award-winning filmmaker Irene Taylor Brodsky. We interviewed 15 people whose hearing loss I had identified when they were babies and are now young adults. We talked about what it was like to grow up with a hearing loss. It is available in full on DVD, as well as a short version for schools. Schools have found it very helpful in giving kids in the school an understanding of what it is like for the kids with a hearing loss, as well as for teaching empathy. The kids with the hearing loss who have seen it said it allowed them to realize that there is somebody out there who feels what they feel. Thank you for participating in today's course.

References

References are included in the course handout.

 

 

Editor’s note: This text-based course is an edited transcript of the webinar, Foundations of Supervision in Social Work Practice, presented by Alison Peak, MSW, LCSW, IMH-E.

Learning Outcomes

After this course, participants will be able to:

• Identify supervision as a foundational aspect of social work practice.
• Examine the various styles of supervision and the purpose of each.
• Identify the responsibilities of the supervisor and supervisee in establishing a supervision relationship.

Introduction

I am excited to dive into this and to begin to think about foundationally what social work supervision means. I am a social worker through and through, an old school social worker who largely believes in collaborating with communities and families in the context of all the ways that they engage with the world. 

I have spent the majority of my career as a clinician, working primarily with children who have backgrounds in hard places and from trauma. I have worked with children in child welfare, and I have worked with both international and domestic adoption, specifically around building and repairing attachment relationships. As I have gone through my career and lived some years and gained experience, I have had the great pleasure to be able to supervise interns and licensees as they go through their process. I have also had the opportunity to build projects and programs, that have required their own level of supervision and oversight of staff in a variety of ways. I am excited to be able to think about that today and what that means for us in regard to forwarding the future of social work as a profession and a field.

Supervision in Social Work

Supervision for social workers is a really big deal. It is part of how we begin to approach the work from the time that people are undergraduate candidates in BSW programs through the process of their careers. We are required to some extent in BSW and MSW programs to participate in supervision, and to receive supervision for a period of time after graduation if you are going to pursue a license.

We also know that this concept of supervision is best practice regardless of if you are licensed or not, and regardless of whether you are two years into the field or 25 years into the field. This concept of supervision is a hallmark to how social work sets itself apart from other professional disciplines. Supervision is a foundation of how we identify as a culture of being social workers. 

The NASW Code of Ethics mentions this idea of supervision 16 times in its ethical standards, and challenges social workers to practice within their scope, but to seek feedback and to address ethical dilemmas to grow themselves in their own career development through the supervisory relationship.

This concept of supervision takes on a couple of connotations. It may be the supervision that we receive for licensure purposes, it may very well be somebody who is with us for that purpose, and it might also be supervision in the context of overseeing a program or overseeing the function of someone else's job. 

Supervision, generally speaking within social work, also has a connotation given to it of a relationship, of there being space for learning, of there being an idea that something is going to occur together among this group or among this pair; that are meeting for the purposes of discussing cases, timelines, accountability to the position, and quality of documentation in a variety of different positions.

Supervision is a concept that is not necessarily held in other disciplines and can be confusing for people who are coming into social work, or when we are talking about interdisciplinary teams. For example, a social worker in a hospital setting with nurses, physicians, occupational therapists, and physical therapist, work with professionals who are not going to have a concept of supervision, and who may hear and infer “supervision” to mean administrative oversight. 

Understanding supervision as a foundational aspect of social work practice, includes our responsibility to be able to explain why and how the supervision process allows us to be better social workers and better clinicians within the field. 

Supervision is required by a qualified social worker for completion of field placement activities at all educational training levels. Qualified social worker varies based on whether or not this is a BSW placement or an MSW placement. Although, social work as a profession, considers supervision as a foundational training field for our future workforce, and holds that only social workers can supervise social workers. Social workers are experts of our own role, our own ethics, and our own way of being, therefore it is our responsibility as social workers to provide that to future social workers and to develop essentially an intergenerational pattern.

Supervision by qualified social workers is also required for clinical licensure in all 50 states. The amount, type, and frequency of that supervision varies across states, but there is still that requirement, that supervision is a gold standard to moving forward and being able to say, I have done advanced training in the field, and to say that training was done with someone who has walked that journey already, and also holds the same kind of ethics. 

Supervision is from the CSWE through education, from NASW through the code of ethics, and also from the way that each state writes its own expectations around licensure behavior. Supervision is clearly essential to social work as a profession.

Defining Supervision

In 2013, the NASW and the Association of Social Work Boards defined supervision as the relationship between, (relationship being that there is a space, there is an entity, there is a process that occurs) between a supervisor and a supervisee, in which the responsibility and accountability for the development of competence, demeanor, and ethical practice take place.

The supervisor is responsible for providing direction, has to be able to apply social work theory, has to be able to communicate standardized knowledge, skills, competency, and applicable ethical content in the practice setting, and the supervisor assumes the responsibility for setting direction and being able to scaffold experiences for that supervisee's growth and development competency and accountability for the long-term. It is a lot of responsibilities to be charged in one relationship.

3 Roles of Supervision

There are three general roles within supervision:

• Education/Professional Development
• Administrative Oversight
• Emotional Process/Support

Educational/Professional Development

A general role within supervision is educational/professional development. How are we communicating theoretical knowledge? How are we communicating developmental standards, general practice standards, and what evidence-based practice is? What do all of those pieces look like? How are we helping to scaffold the professional development process of the individual in front of us? 

Administrative Oversight

Supervision also holds the role of administrative oversight, of how are people juggling both the person of being the social worker and also the process of being the social worker. Many, many times, I am going to bank it is  close to a 100%, we become social workers out of excitement of working with communities and legislatures and clients and families, and not because we thought it would be really fun to write a court report.

Sometimes in the duality of our role, it can be really easy for that administrative oversight to feel lost in what might really be the thing that catches, again, almost all of our attention, of being with people. 

Supervision absolutely plays a role in administrative oversight, of ensuring that those social workers at all stages of their development really are able to understand how some of those processes connect to ensuring that the services provided continue, and that we are engaged in ethical and transparent practice. 

Emotional Process/Support

The third role of supervision is emotional process and support. There is an aspect of showing up, of being present in places where hard stories are told and hard work is done, that it is important that we have another, someone else to go back to, to be able to recount that story, to be able to think together about what does it mean? What did we see? What did we hear? How do we hold onto that for our own experience, and also make meaning of it for the people that we were there with? 

Those three roles of supervision, to some extent, are going to be found in lots of different places. It may be in licensure supervision, it may be in supervision of a field placement, and it might also be in supervision of a program where the individual in front of you is neither an intern or on licensure track. 

Supervision in Research

Within the research world, recent studies in Australia and Europe both identified this idea of average career life. Thinking about how long does an individual, on average, stay within a career field before they either retire, find a different position, or say, "I quit," and go cut fabric at Joanne's.

How long do they typically say, "I stayed with this identified career trajectory before this concept of burnout just became so big." In that study, what they found was that generally, physicians will hang in on that identified career path for about 25 years post-graduate, so after medical school, so about 25 years before they either retire or say, "I'm going to cut back to part-time," or, "I've decided to take up becoming a bartender."  For pharmacists, the average career life was approximately 28 years, whereas the average career life for a social worker is about eight years. It is considerably less than many other professional programs. In that same study, social workers, when asked, discussed high caseload, paperwork, and the urgency of the work in front of them as far more stressful than being with clients and families and their stories of hard places.

What we know is that at the end of the day most of us come to social work in this place of being prepared to hear hard stories, of having this desire to be with people. We do not generally come to the work prepared to fill out SOAP notes on 50 people. That is a process where we are not as well educated, we are generally not as well prepared on the front end, and it can feel as though the family and the client get lost in the midst of all of the systemic things when we do not have context, and someone to help us gain perspective and scope and to really be able to regulate in those places of feeling mismatch.

That same study, took a look at those social workers who really outpaced and surpassed this eight year career mark. They took that group that were over the eight year point and they said, "Why did you stay?” "Why did you keep doing this?" "What helped you keep going?”

The factors that this group of people pointed to were consistent supervision, the ability to externalize stressors with someone else present, not that somebody else made it go away, not that somebody else made the SOAP notes randomly disappear, but that somebody else could sit and be present and listen to feelings of being overwhelmed by broken systems, by paperwork, by expectations and deadlines; that there was a preserved time set aside for them as an individual.

That means that not only was supervision there and there was someone to listen to the stressors of the moment, but that there was also consistency for the time held; Every Tuesday at two p.m., every Thursday at eight a.m. There was a pattern and a predictability to the level of support. In addition, there was shared experience with another in the stress of the situation, that again, somebody in that supervisory relationship could say, "Yeah when I get behind, it is really hard.” "Yeah, I do not like it when I spend all day in court and then feel like I lost the entire day to do all the other things that are calling on me." 

There is that place of not being alone, of being able to say, “oh, other people have gotten through this.”  Also, being able to name the process in front of them and there was also mentorship. There was somebody that they could look up to, somebody that they felt had some answers, somebody who they felt had their best interest at heart.

When we talk about supervision as an option for the foundation of the field, as an option for preservation of future generations of social workers, part of the preservation of future generations of social workers is to keep them for longer than eight years. It is a lot of training and a lot of learning to just lose so frequently, and to rotate through all of these efforts. Supervision really does point to being one of the leading protective factors for keeping people in positions longer, and for being able to allow them to feel more supported in that process. 

Research has also shown a connection between decreases in burnout and vicarious trauma when there is satisfaction with supervision. Whenever there are individuals who feel as though their supervision has met the needs in front of them, then they are less likely to feel burnt out and to have symptoms of vicarious trauma. On the flip side of that, individuals who feel frustrated and unheard in their supervision are more likely to have symptoms of vicarious trauma and to express feeling burnout. 

What those factors in that place of perceived satisfaction within supervision were about, did they feel like supervision was frequent? Did the individual feel as though supervision provided them with perceived emotional support? And again, NASW describes this as a relationship, was the style of the relationship a fit between the supervisor and the supervisee? 

Research has also shown that dissatisfaction in those areas generally leads to increased senses of burnout and also is really linked to increased turnover, long-term. In places where there are frequent turnover within programs or frequent turnover within agencies, it is a point of evaluation. Not a determining factor, but a point of evaluation of the supervision provided, meeting the needs of the individuals requesting it, and is it allowing for this place to have a style that matches the relationship being requested, is it frequent, and is it emotionally supportive?

Styles of Supervision

The Center of Excellent at Georgetown through partnership with HRSA and SAMHSA defines four styles of supervision:

• Administrative
• Clinical
• Modality
• Reflective

Administrative

Administrative supervision is the oversight on timeliness, documentation, policies, and procedures. This is supervision that everybody needs. This is supervision to say, "Hey, you forgot to sign this note, can you go do that?" Or, "Hey, remember, we've got this deadline coming up, "this audit is coming through, "it is really important that you make sure you do all your documentation in 72 hours.” "If not, there are these implications long-term." Administrative supervision plays its own very integral role in development of providers, but also in the functioning of agencies and organizations. 

Clinical

Clinical supervision focuses on providing direct feedback on clinical concepts, such as theoretical knowledge, an assessment of the client or family or organization that the social worker is working with, thinking together about developing goals and treatment planning, selecting diagnoses, and thinking about which modality might be the best approach. Clinical supervision sometimes takes on the air of the answer to the question of what do I do now, that the new social worker comes and says, "Okay, I tried this thing, what do I do now?" Sometimes clinical supervision can be that place of setting direction for that next clinical step, kind of paves a path. Like, "we have walked this path five times now, you have a better expectation of what is coming than you did the first time you walked it, so tell me what you think we should do next?" 

Modality

There is also supervision specific to modalities. When we think about specifically evidence-based practices under SAMHSA or evidence-based practices under the National Center for Child Traumatic Stress, there are learning collaboratives specific to those evidence-based practices that require additional supervision on the implementation of that modality. How are we doing it? What do we do next? Did we follow these steps? What was it like for you in that place when the family said, "I do not  want to do that?" And, how do we navigate those places, in an effort to make sure that individuals in programs are meeting fidelity of those research-based, evidence-based practices? 

Reflective

Last is reflective supervision. As it relates to styles supervision, I will acknowledge my own bias of this style of supervision, this is the place where I live most. This is the place that I enjoy. I enjoy being in a reflective stance that really sits with supervision focusing towards the emotional experience of providing services, of slowing down and thinking about, who is this child and who is this family and who is this person in front of me? What is the story of this organization and how they came to be in function, and what does it mean to be a part of them, or not a part of them? How do we, as providers, in whatever our capacity, show up to interface with these people who have asked to be in relationship with us?

Reflective supervision slows down in that place of focusing on details, of increasing awareness to the emotional process of the client. For example, what is it like for the client to be the other half of this clinical relationship? Or if the client is an organization, what is it like for them to seek consultation, for them to seek advisement on these things? What does it mean for them to be the other part of this relationship? What are their relationships around them like? And what is the emotional process of the social worker, of the clinician, who presents in that moment and says, "I will engage in this relationship, and now be with you?"

There are lots of overlap of the styles of supervision. There will be times that even in a really slowed down, reflective place, that I will say, "Oh, timeout. I need to know…" For example, I did reflective supervision with one of my staff a couple of weeks ago and we got into this conversation about this client the staff member is working with, and the staff stated, "he told me he was suicidal." My response was, "Timeout. I need to know if you called your direct supervisor. I need to know if you documented it. I need to know if they are safe and I need to make sure we did assessments." The administrative responsibilities in that moment took over. 

Styles of supervision sometimes are clearly carved. There are different people who are doing different roles, and sometimes it is a Venn diagram of overlapping perspectives of how we show up to provide support to those who are engaged in the work. Within that, supervision styles are also like clinical styles. Some clinicians are trained to be really CBT focused, and others are trained to be really focused on internal family systems or psychodynamic.

There is always that place, goodness of fit, and oftentimes when we look at the research, there is not a ton of discrepancy about whether or not one is vastly more impactful than another. It is about relationship and goodness of fit. The same is true when we look at supervision and supervision styles. Supervisors are going to have different styles of how they show up, of what they are comfortable with, of how they negotiate that relationship, that space between, and yet supervision might often parallel the experience of the clinical space. 

If this is a short-term program, like an intensive outpatient, and we have only got clients for 28 days, and we have these goals that we have to meet, it is likely that supervision will focus on, these are the goals that we have to meet, and we have a very short amount of time to get it done in. There will be parallel between the experience of the work being provided to the client and the experience of the supervision being provided to the staff. And so again, thinking about how those styles match up, thinking about what the organization and the supervisor hope to bring to this relationship for learning are really important beginning points when we start supervision with anyone. 

Role of the Supervisor

As the supervisor, whether or not we are engaged with a new supervisee, or we're taking on a new position, we got a promotion, we switched agencies, whatever it may be, as the supervisor, our number one job is to begin to identify the purpose of the supervision. 

Are we here to provide clinical direction? Are we here as a consultant to set trajectory for a learning cohort? Are we in this moment really supposed to hold space and slow down and think together about what clinical challenges might be in for this program?

What is our role? What is our lane? How do we sit and identify with the purpose of that? 

Identify the Boundaries Inherent to the Relationship

We also want to think about identifying the boundaries of that relationship, because again, we might show up as supervisors in lots of places. We may be the supervisor within the agency, the consultant to the agency at large, or again, a place of that fidelity and implementation model. So, what is our relationship to the person being supervised? What is our relationship to their organization and work context? How is their relationship as an entity also going to impact the relationship between the supervisor and these entities? How is all of this going to work together? 

Establishing Expectations for Supervision

Within that, we see consistently through the research that one of the places where supervision is communicated as most helpful is when it is predictable. We also know that relationships are at their healthiest when they are predictable, predictable in people's responses, predictable in the events that will occur, predictable in how we access someone. And so again, there is a parallel there, and the experience of what we know is good for humans and what we know is good for supervision of social workers. 

Within setting some of that sense of predictability and safety, we really want to set up expectations. Some of those expectations come in routines. Is there an expectation that a supervisee bring a list of questions to supervision? Is there an expectation that supervision will always begin with a grounding activity?  Is there an expectation that supervision will cover quality of documentation? What is the expectation for being together in that place?

What will the routines of your time together be? How will you negotiate them? Who gets to decide what the topic for focus is? Is it the supervisee, or is it the supervisor who reviews documentation and may have concerns? Who goes first? Whose concerns may be priority? How do you discuss that? How do we have the conversation of, "I hear that is really hard for you, but today I have got to talk about this.” "I have to know about this specific situation.” "How do we help you contain this until I can make sure that the priority is safe?" 

We are also in that place of setting up for felt safety, and this is really specific to each individual idea. What does that mean for there to be felt safety around supervision?

There are lots of things that impact that, people's own stories of development, their own histories of early relationships and trauma, our experiences as supervisors, as well as the experience of the supervisee. If we are supervisors, we may be hoping to embody a style and a presence within supervision that either emulates someone that we really appreciated in our career growth, or is in direct contrast of someone we experienced in our career growth. Supervisor have to think through what is it that participants need in order to be able to be present in this moment, to allow themselves to focus on the task at hand, and to really consider themselves within the context of the work. In addition, supervisor want to make sure that supervisees clearly know what are the topics of focus.

Depending on your role as the supervisor, this is going to change. If you are there as a consultant on a learning cohort for a fidelity model, the topic probably is not going to be documentation timeliness. It is probably not going to be frustration with the new healthcare plan. Therefore, being able to say, "Oh, that is an important thing to talk about.  Let us talk about who should hear that. Let us talk about what things should be brought here, and how we best negotiate use of our time together." 

We are also looking in this beginning phase as the supervisor to identify supervisee development. This one I think is hard. I think this one really takes time. It takes time in the same way that it takes time to properly assess clients, and to really think about what that client's strengths are and their areas of growth.

There are lots of parallels when we think about the supervisory relationship. Does this supervisee really think about the work, think reflectively, and take ownership of their own experience? Are there experiences they have had that are getting in their way of being able to take feedback or to see the perspective of multiple people in the room? Is this a supervisee who maybe did not have a great intern experience, and so is coming to us with less hands-on work than somebody who has been in a BSW role for 15 years and decided to go back and get a Masters, and has really been in the field, maybe in a different capacity, but been present and been in the work for quite a while.

Within that, we are looking to really think about development for clinical capacity, but also for a reflective capacity. Can they make sense of another? Do people feel as appropriately complex as they should? Does it feel like a math problem to solve, that a staff quickly figures out, claps their hands and says, "see that was not so hard?" Are there consistent places of frustration or biases, blind spots that need to be addressed, maybe through training and technical assistance, maybe through direct conversation? Just like we talk about development existing across the lifespan, development also exists in a professional domain. There are places where people are really learning to crawl, and other people might be running down the hallway.

Scaffolding Learning and Growth Through Supervision

Within the infant mental health world, we have this adage of do for, do with, stand back, and admire. It is a pocket guide to what it means to scaffold, For example, when we think about children specifically, we start off doing everything for them. Infants do not feed themselves, they do not change themselves, and they do not hold their own heads up. We do everything for them, and as they get older, we begin to help them. "Oh, I will help you pour your juice.” "I will help you cut your sandwich.” "I will help you tie your shoes."  As they (children) continue to develop, we stand back and we say, "Oh, look how good you did.” “Look how proud of you we are, look at all the things you have accomplished." And there is again, parallel to this in staff development. 

As a supervisor, part of our role is to really think about the scaffolding. Is this a skillset that if we do for, do with, stand back, and admire, that a staff can grasp? They need to be shown how to input the form in the EHR, they need to be walked through an example of how we would develop a Trauma Triangle for TF-CBT. We ask them to bring it back to us, "Show me next time you do this, "let me check it with you first. "Let's talk about it before you present it to a family." 

And then again, sit in that place of congratulatory praise around, "See how far you've come. Look at all the things you've learned to do." That is scaffolding, of remembering, we have got to start at that bottom floor and we go to build our way up. It helps us to set expectations both for ourselves as the supervisor, but also for the supervisee in front of us. 

Highlighting Opportunities for Growth and Reflection 

As supervisors we want to highlight opportunities for growth and reflection. We want to be able to think with that supervisee about what it means to be at this point in their career. One of the things that I hear so often from my new staff and by “new,” I mean, not yet licensed; is this idea of, “I should feel more comfortable,” “I should be more confident,” and “I should know what I'm doing.”

I tell them often you are on a developmental trajectory. You cannot know what you do not know. This is a process. People do not learn to speak a foreign language in six months, and people do not learn how to be present and really understand all of the complexities that present in front of us in clinical capacities. 

This really does parallel in macro level work and organizational consultation and work with policymakers and legislators as well. When something new occurs, it takes us time to build a relationship, to understand all the dynamics at play, and to really get a good understanding of what is in front of us. 

As the supervisor, we get this opportunity to highlight options for growth and reflection, and to think about the underlying emotional response to the issues."What was that like for you, when you were in that family session, and Mom and Dad started screaming at each other?" “What did you want to do? Not what you did, but internally, what would you as a human like to have done in that moment?" 

It is also our opportunity to highlight clinical knowledge and gaps within preparation level, The role of the MSW program is to prepare people with sufficient knowledge to engage in introductory practice. MSWs are not given evidence-based treatment models, they are not trained specifically in how to do DBT or what it is like to run a residential treatment unit for kids who are going to be there for eight months.

They (new MSWs) do not have that level of experience. Therefore, our own lived experience as social workers, as the supervisor in the situation, is to say, "here is a place where we can learn." This is a place of saying, "let me give you some information to scaffold you to the next step, because trying to make that leap on your own will not be sufficient." 

Within this, and highlighting those opportunities for growth and reflection, the supervisor is also challenged with highlighting both implicit and overt bias and cultural awareness. There is emphasis within the social work code of ethics on being aware of all of the cultures in which we serve, and again, of seeking supervision in places where we are outside of our scope of practice or when ethical dilemmas are raised. 

So, this place of implicit bias and overt bias, not just the I was unaware blind spots, but the places we knew we had big strong opinions about an individual, about a lived experience, about the thing that is sitting in front of us at that moment. The awareness of cultures, and that may mean racial culture, that may mean of different countries, but it may also mean of organizations, of the culture of this organization. For example, the organizational culture may be one where we do not talk about things until they get really big and they blow up, or this is the point of problem solving, and so everybody goes to this individual to solve problems. 

We are aware of the role that culture and that the worn paths and journeys in front of us play in an interfacing and engaging with others in the work. The supervisor's job is to help scaffold, to set expectations, to help that supervisee to take a step back and think about things from an externalized perspective, and begin to consider all the pieces at play in being the social worker present in that situation.

Social Justice 

Recently, there have also been increased calls among the social work community that supervision is a place to highlight our dedication to social justice. Social work is a social justice field. I feel very strongly in that place and very proud of social work's efforts to say, it is not enough to just show up and say we are professionals. It is our job to be advocates for larger social justice movements outside of the work we do on a daily basis.

Part of that is that our role should filter that call to social justice through our supervision, and through supervision we are highlighting those roles, we are emphasizing what it means for there to be social justice concepts in the work in front of us.

Just this week, I had a conversation with a supervisee about what it would mean if Biden's economic rescue plan goes through, and earned income tax credits are an option for our families with children. What does it mean if their economic status suddenly changes? What does it mean for the problems in front of them? What does it mean for their need for services? Are they going to need us anymore? What will the implications on our work be when there are shifts within the system that are current events, that are moments of social justice that are right in front of us?

It is also the place in that of being in situations of confronting bias, and being able to highlight those. For example, after the murder of George Floyd, being able to sit down with the team and say, what does it mean for us to be a majority white organization serving a majority minority population? What does it mean for our clients? What is our role in dedication to social justice and being able to voice that, own it, push ourselves, recognize the places, and the opportunities for growth and reflection within those space? And again, this is a place that as the supervisor, if we are talking about setting expectations and setting routines, we have to early on in the supervisory relationship set the expectation that these topics of social justice, these concepts of race and equity are very much going to be part of the conversation at hand.

Role of the Supervisee

The supervisee also has a role. D.W. Winnicott in the 1950s described the relationship as a dance. Dancing alone does not get us very far. We are engaged in things like the tango. There is always two, there is always back and forth, and so while the supervisor bears a larger burden based on career trajectory, development, and experience; the supervisee also bears responsibility to what is in front of them.

Attend Consistently 

 The supervisee has to attend consistently. They have to show up, and sometimes, depending on their background, depending on their training field, depending on their internship maybe this got to be optional, maybe it was a sometimes thing or a supervision group, that they could pop by if they needed something. It may be that we have to expressly indicate that the supervisee has got to show up. Sometimes the beginning of the foundation of the relationship is just being present.

Bring Things to Discuss to the Supervisory Time

 The supervisee has to bring things to discuss. Maybe it is in the form of a list, maybe it is concrete questions, maybe it is just a concept or a free-floating idea that they need to come with. But to come to supervision and be like, "Everything's great, "I've got it totally handled. "I need nothing, I'm on top of it" all the time leaves a whole lot of dead space in a relationship. 

Identify Needs and Vulnerabilities

Relationships to be truly authentic must imply that there is some level of vulnerability and that there is some level of acknowledgement of need. This will progress over time. If it is the first supervision you have ever had with the supervisee and they come in and disclose their own personal traumas and how it shows up in a clinical session, most of us would be a little concerned. There should be, just as within the parallel to the clinical world, the parallel to our relationships as humans, there should be progression over time where those needs and vulnerabilities shift. In our scaffolding process that we as supervisors are naming, that process will grow and shift over time. They are also very much in the beginning a need for the supervisor to emphasize that saying, "I do not know," is not the same as, "I am incapable." Lots of times in the beginning, supervisees are very, very hesitant to say:

 "I have no idea.”

 "I do not know what to do with this client.”

 "I didn't know how to respond."

 "I said, 'Okay, thanks,' "because I wasn't sure what to do next." 

Supervisees have a lot of concern about being inferior, about being incapable, and about the possibility that they will not be good enough for the position. Without expressly naming, the ability to say, "I do not know," supervisees may really hold back from that, and then that development of being able to express needs and vulnerabilities is also going to lag. 

Learning to Sit with Discomfort

Supervisees also have to learn to sit with discomfort. Supervisees have to sit with their own discomfort in that growth place, their discomfort around not knowing, and their discomfort around being in a challenging first session with a client.  Supervisees have to be able to hold space and learn which feelings really are theirs and which feelings are those that have been projected onto them, that now they got to figure out what to do with.

Leaning Into the Professional Growth Facilitated Through Supervision

The supervisee’s role is also to lean in to professional growth, to say:

 "I'm here to learn." 

"I'm here to listen." 

"I'm here to be present." 

"I am here to know the things I do not know."

That is not a reflection on someone's personal value or someone's capacity or potential for the future. It is about that in many ways, supervision is an apprenticeship within the social work field, that it is this process of, we learn from others who have been there before, and we hope that in that learning, we see some things that maybe they did not see, and they see some things that the supervisee has not yet seen. 

Supervisory Relationship

Within that supervisory relationship  we have talked about this place of there is a negotiation, there is that beginning, that ritual, that routine, that understanding of what are the scope and boundaries of this relationship in front of us?

Is it that I am here as a consultant for a six month period of time, or in some situations, supervisors are engaged without limit. The individual that I get supervision from, I have gotten supervision from for four years, with no intentions of stopping that contract. And so, what does that mean? 

How are we setting up expectations on that relationship so that supervisees and the supervisor have an understanding on scope and boundaries and what that means? What are the goals? Are the goals fidelity to a model, are the goals to get somebody to licensure, are the goals to get them off of a performance improvement plan? What is the purpose of this time together? 

Co-Creating the Supervisory Relationship

What do we need to know about each other? Is it important that I know that when you get overwhelmed, you take your dog for a walk? Is it important for my supervisees to know that I tend to talk in sports analogies, and sometimes if you are not a big football fan, that could be confusing? 

How do we learn each other in this place of being in relationship? In that place of building satisfactory supervisory relationships, it is about co-creating, it is about thinking through things together.

How are we going to define those roles? How do we want to set ritual and routine? How do we want to be able to navigate when hard topics come up, when, a supervisor has to challenge a supervisee because they missed something, or because they avoided something?

Basically, how are we going to navigate that together? What is it going to look like to really show up in those roles and expectations. Brene Brown in her "Daring to Lead" book talks about this idea of painting done, of being able to sit down with a team with a project, however that may be, and to say, “what would it look like if we painted done?”

So at the end, when our predetermined time, again, depending on the goal of this relationship, is finished, what do we  want to be able to say we accomplished? We are going to be together for six months, what are we hoping has been finished in that time together? What does it look like for you to show up and do that, and for me to show up and do that?

And so for, in that place, that co-creation of expectations, both the supervisor and the supervisee have very clear ideas of what they need to do to show up and paint done in this place. 

Ethical Considerations in Supervision

Within supervision, there are also a considerable number of ethical considerations. This is a place that I think, as supervisors, we get there for a couple of reasons. We get there because we have had longevity with an agency and we got promoted. We get there because we were good at our documentation timeliness, and so that meant we got promoted because we had pretty good oversight over things. Sometimes being able to supervise the next generation of professionals is something we have always wanted to do. Although, sometimes we get to supervisory positions, without a pretty thorough training process and what it actually means to step into those roles.

Identifying the Supervisor’s Role and Responsibility to the Larger Agency

There are a lot of ethical considerations to think about when we take on that additional responsibility, and some of those responsibilities and ethical considerations are going to vary based in context. If you are supervising interns, that is going to look very differently than if you are a consultant within an agency overseeing staff who maybe are employed with your agency, but you do not actually have any oversight over them. 

When we think about larger mental health organizations, it is not uncommon that the social worker who provides supervision may be within the adult unit, but they have got paid staff that they are providing licensure supervision for, that they do not oversee on a day-to-day basis, therefore they are not 100% familiar with how their workflow may be. So, what are the potential inherent difficulties based on the context in which we are providing supervision? 

So, within that, the first piece is, what is the supervisor's role and responsibility to the larger agency? 

Identifying What Information May be Taken Back for Annual Review or Performance Evaluation

Years ago, we had a staff where there were some real concerns around performance. The staff was not a social worker, and so we had to get outside consultation from somebody who did not work for our organization. 

The beginning conversation was, what do we need to know? What are the points at which, I really do not care if you talk about all these things, but what are the red flags? What are the points that the organization has to know about the content of what is going on in supervision? 

The answers to these questions have to be clear for both the supervisor and the supervisee. The supervisee must be aware that in entering into that supervision relationship (just like we tell clients these are the reasons I am going to break your confidentiality), these are the reasons I am going to call your employer.

These are the things that would cause me concern enough to talk about performance improvement plans and professional write-ups. We want to know what we are sending back for annual review, and also the things that need to go back more emergently. As well as the things that we would consider to be large ethical conflicts that someone needs to be notified immediately due to safety concerns. 

What Is the Crisis Plan?

Another ethical consideration is what is the crisis plan? Does the agency have a crisis plan where the supervisor is involved, or that is sound enough that the supervisor does not need to be involved? Is there a crisis plan that if this is a supervisor who is outside of the employing agency, that they know how to communicate that there has been a crisis, and that they know how to ensure that checks and balances around safety have been insured? 

Who is that supervisor's point of contact? How does all of this get navigated when a concern, especially around client safety comes up? If a crisis plan involves the supervisor in question, then what is the plan if the supervisor is absent? If there are expectations within an agency that you go to your licensure supervisor when there is suicidal ideation, what happens if your supervisor is out sick? How are we ensuring that everyone involved in the provision of services really is capable of doing that well to their own level of risk and liability?

How Will Ethical Dilemmas be Navigated?

The same thing comes up with ethical dilemmas. Ethical dilemmas are just that, the black and white things are never particularly difficult to solve. It is that place when we live in gray that things get complicated. If the supervisor has a concern that this is an ethical dilemma, how does that get communicated to the agency at large? What is the supervisee's relationship for taking up that ethical dilemma? What is the concern if not a social worker, but we had an intern who has agreed to go on a date with a client? Who gets notified about that? Who is the person who gets to call and tell the school? Who is the person who gets to have a conversation with the supervisee? Who is the person that gets to determine whether or not that is an ethical dilemma? How are we negotiating those things, and how do we have that written out so that everybody is aware on the front end of the beginning of that supervisory relationship?

Expressing Concerns About Work to the Supervisee

There will be difficult conversations about work. It was a difficult conversation with that particular supervisee about agreeing to go on a date. So how do we do that? How do we agree on the front end that part of growth means stretch, it means being pushed, it means that not everything is going to be comfortable the whole time? When those moments come, how are we going to navigate that? How are you going to accept feedback? What do you need to be able to hear the words that we have to say? What would be the place that we cross over from, "Let's talk about it," to, "I need you to listen?" We have to communicate those expectations in ways that are clear.

Summary

You have my contact information if you have any questions. I love to hear from people, so please know that. If you have any questions or anything that you have got curiosities about, do not hesitate to reach out. We did discuss a little bit in this presentation the role of race and equity and cultural awareness in a variety of settings, but if you want additional information, you can check it out on the NASW's website. 

Questions and Answers

What would you say, especially for a new practitioner, is the single most important benefit of supervision?

When I started practice years ago, and it has been years at this point, I think it was the idea that someone knew where we were going. It was that place of having that co-pilot. It is almost like getting your driver's license of somebody who could say like, "Oh, oh, you're going to turn up here," like, "Yeah, the road's bumpy, "but that is not because you ran over something "and flattened the tires." Like, that there was a guide there who could say, "I see where we are going even if you do not," and that I could really ask those questions to, that again, that place of acknowledging need and vulnerability is such a big deal, of being able to say, "Hey I got a thing, and can I get some support?" And generally, people are really eager to show up in that manner, and to really be those co-pilots who help us find our way.

As far as social workers who want to be in the role of a supervisor or want to provide supervision, do you have any resources, any books or anything you recommend, that a practitioner could use to strengthen their supervisory skills?

Absolutely, there is a book by Sherryl Scott Heller and Linda Gilkerson, it is a "Guide to Reflective Supervision." I adore that book. Really it is about that place of really slowing down and thinking about emotional processes. That book provides some concrete examples, and it is digestible. You can read the chapters independently and it is not going to take days and days to get through. The chapters are five to seven pages, so it is accessible and really does provide some scaffolding, because just as we are in this process of doing for, doing with, standing back, and admiring on supervisees, if you're a new supervisor, you need somebody who can do that for you, too.

So, I would definitely encourage that book specifically. I also think that it is really important for people to get supervision on their supervision. If you are just now starting out and this is your first time being in a position where you have got interns, administrative oversight, or whatever that may be, that you have got your own person that you are going to, to be able to ask those questions, to be able to think together about what might be occurring. Because we all need somebody in those beginning phases of developmental trajectories, wherever we are at.

Can you kind of speak to how supervision plays into the obligation of self-care for social workers?

I tell people frequently that my supervision is my self-care. I do not say that lightly. I have had the same supervisor for four years. This is somebody I meet with three hours a month. And again, part of that is my belief that you need supervision on your supervision, but it is the place that I know is predictable, that I know somebody is going to have my best interests at heart, and is not going to ask me for something. As social workers, regardless of where you are in the field, people come to you with a list of things, and so just like therapy provides individuals with a place where no one is going to ask something of them in return, supervision does the same thing for us.

There is a lot of conversation in the research around supervision as the idea of therapy on the work. It is not therapy on your personal stuff, it is not therapy on your relationships, or your healthy and unhealthy coping skills; but it is about the emotional process of what it is to show up and do the work in front of us. Therefore, that is self-care, to be able to identify and contain your emotional response, to have somebody to help you ground and gain perspective on the things that are occurring. Those are pretty big deals, especially when we look at the research and the impact of supervision on vicarious trauma and burnout and turnover.

References

Refer to the course handout for a complete list of references. 

Editor’s note: This text-based course is an edited transcript of the webinar, Treating Non-Suicidal Self-Injury, presented by Patrice Berry, Psy.D, LCP

Learning Outcomes

• Define non-suicidal self-injury, different types of self-injury, and dispel common myths about self-injury
• Identify ways to assess for non-suicidal self-injury, safety plan, and common reasons why people engage in this behavior
• Identify clinical approaches to treating non-suicidal self-injury

Introduction

I'm a clinical psychologist and I've been working in the field for over 15 years. I started in residential treatment and throughout my work, I've seen an increase in non-suicidal self-injury (NSSI) and thought this would be a good course for people at a variety of levels. Learning how to address non-suicidal self-injury applies to work within school systems as school social workers will get referrals when there is a report of a student that's been engaging in behaviors. If you're working within the juvenile justice system, either adult or at the pediatric level, you may see this type of behavior come out. This is also common in medical settings/hospital settings such as the ER, community-based programs, outpatient clinics, and residential/group homes. 

Disclaimer

Some of the treatments talked about in this presentation require additional training and this training will not cover everything that's involved with those programs.  If you find something that you're really interested in, I'd encourage you to get additional training or certification. For example, we'll be talking about some dialectical behavioral therapy programs and skills, and that maybe something that you want to look into more in the future.

Mental health professionals are responsible for operating within our scope of practice. If you do get a case that you're not comfortable treating within your practice, or if there's something that's outside of what you're used to dealing with, I would encourage you to refer to an appropriate person or seek appropriate consultation. 

Terms Defined

There are lots of different terms that are used and when you're doing a risk assessment, we will assess for suicidal ideation.

Suicidal Ideation is thoughts of wanting to die. We often differentiate that from a suicide attempt. If someone has actually acted on those thoughts, we would consider that to be a suicide attempt.

Thoughts of self-harm are defined as thoughts about harming yourself and some people just have thoughts about harming themselves with no intent to die. 

Non-suicidal self-injury would actually be acting on those thoughts of self-harm. In this course, we'll be talking about dealing with non-suicidal self-injury, actually acting on those thoughts, and how we can help clients cope with having thoughts of self-harm. 

Types of Self-Injury Examples

There are many different ways that individuals can engage in self-injury. The most common is cutting and it is the one you'll often get a referral for. You might get a call from a parent or a call from a concerned family member that someone is engaging in cutting.  I just wanted to give a list of a lot of different types (shown below) because all of these behaviors are definitely concerning and we would want to do a further assessment if someone is engaging in these types of behaviors. We wouldn't want to ask are only engaging in cutting. We would want to get an idea of what are the other ways or types of things an individual is engaging in self-injury. 

Some individuals scratch themselves and it's not because they itch, it's for the purpose of doing harm. Headbanging is very common, especially in individuals that maybe are on the autism spectrum or in younger kids in general as well. Pinching is another type and that would be pinching themselves to the point of doing some type of harm. In all types of self-injury, it's doing deliberate harm to oneself. Hair-pulling (trichotillomania-term within your DSM5) may include pulling eyebrows, pulling physical hair, or pulling the hair on someone's arm.

Biting nails to the point of bleeding is another example of self-injury. This would be going beyond just being nervous biting nails. It's being emotionally distressed and then engaging in some nail-biting. Punching self or punching objects is one that I think sometimes gets overlooked.  Punching self or punching objects can be a form of self-injury where someone gets so mad to the point that they punch a wall and then they feel better.

Carving words or images into the skin is another form of self-injury. All of these behaviors are for the point of relieving some type of emotional distress or relieving some type of pain. Exceptions to this would be those that are considered to be spiritual rituals culturally or someone that gets a tattoo to remember a person after that person has passed away.  It would only be self-injury if the point of the behavior was to cause some type of pain in order to relieve that distress.

Burning, rubbing sharp objects, teeth pulling, eating sharp or dangerous things, putting needles or objects under the skin, breaking bones, or intentionally reopening wounds are other examples of self-injury and definitely becomes a safety risk that you'll also want to assess. 

• Cutting
• Scratching
• Head banging
• Pinching
• Hair pulling (Trichotillomania)
• Biting nails to the point of bleeding
• Punching self or objects
• Carving words or images into skin
• Burning
• Rubbing sharp objects
• Teeth Pulling
• Eating sharp or dangerous things
• Putting needles or objects under the skin
• Breaking bones
• Intentionally reopening healed wounds

Special Note

Within the DSM-Five, NSSI is listed as a condition requiring further study. That would be someone that is only engaging in these behaviors and they don't meet the criteria for depression or anxiety, or an eating disorder, substance abuse, or some other trauma-related disorder. In my years of practice, I've never had someone only have non-suicidal self-injury.  There have typically been other things going on, but I've worked primarily within clinical settings where someone was coming with a variety of other things. Non-suicidal self-injury is also a very common symptom with Borderline Personality Disorder, along with suicidal self-injury, suicidal gestures, or suicide attempts. 

Common Myths About Self-Injury

There are lots of common myths about self-injury. 

• Self-injury is rare
• Self-injury always requires hospitalization
• Self-injury is only for attention
• If they really wanted to die they would cut deeper
• Self-injury is only cutting
• Tattoos and piercings are a form of self-injury
• Nothing helps/there is no treatment

Facts About Self-Injury

• Self Injury is common, especially among adolescents
• Self-injury does not mean that a person is suicidal
• Self-injury is often hidden and is a private act, it is always a negative way to cope
• Individuals can have NSSI one day and suicidal ideation another day
• There are multiple documented forms of self-injury
• Tattoos and piercings are only self-injury when used as a way to cope and not just personal expression
• Self-injury can become addictive and yet there are multiple effective treatments.  

Self-injury is actually really common, especially among adolescents. It can begin as early as maybe five or six years old and it's often a way to try to cope or deal with emotions, with internal distress. It can continue all the way up through adulthood. Some recent studies have shown that maybe a third of adolescents have engaged in some type of non-suicidal self-injury. Some people try it and they don't like it.  Others engage in the behavior and then it becomes a negative way to attempt to cope with things in their life.  That is when they're often going to need some type of treatment to replace that behavior with something that's healthier. 

Self-injury doesn't always mean that the person is suicidal. It could mean that they just had a bad breakup and they engaged in the behavior as a way to cope with the problems. We don't want to think, "Oh, it's not that bad." because it's not suicidal.  We don't want to minimize the behavior because they didn't have thoughts to die, but at the same time, we don't want to overreact to the behavior if the person just needs different ways to cope with what's going on.

When people think that self-injury is about attention, that goes against the fact that self-injury is often hidden; people often do it in areas that aren't seen. It's very common for the bathing suit areas, upper thighs, and maybe the stomach. Within my practice, if someone has injuries that are within certain parts, I encourage the family or a medical doctor to take a look at where those injuries might be.  As a clinician I say I look for maybe cuts on arms. If I do see a cut on a client, it's just natural to check in with them to see, "Hmm, so what happened?" Having an inquisitive, "Oh, I noticed that." and not a judgemental tone because they're often more likely to talk more about what's going on if they don't feel judgment coming from the social worker.

Self-injury is always a negative way to cope. If the individual had a better way to deal with their emotions and behaviors, (and I've been doing this work for a long time, trust me) they would do it. Typically, these are individuals that don't manage emotions very well. Maybe within their family, emotions are either overexpressed where emotions are just are these big volcanoes that are constantly erupting or maybe they're in a family where emotions are never expressed and they're minimized. They haven't learned appropriate ways to cope with and deal with emotions. Knowing what's under the self-injury will help direct your treatment or your recommendations for the client or the family. 

Individuals can have non-suicidal self-injury one day and then potentially have suicidal ideation another day, or maybe even within the same day. Just because someone engages in non-suicidal self-injury doesn't mean that they don't have suicidal ideation too. Therefore, you want to assess for both and that will direct your risk assessment and your recommendations once you've determined with the client and the family what next steps you need to take.

There are multiple documented forms of self-injury, which was discussed earlier. Tattoos and piercings are only self-injury when they're used as a way to cope and not as a form of personal expression. Self-injury can become addictive and yet there are multiple effective treatments. We will get more into the addiction model that sometimes is associated with self-injury a little bit later. 

Example Questions During Assessment and Safety Planning

Below are just some example questions that you might ask during a risk assessment and safety planning.

• Are you having thoughts about harming yourself? 
• Are you having thoughts about dying?
• How have you harmed yourself in the past?  (Give examples to lower the shame, cutting, punching walls, banging head, etc)
• If you are feeling unsafe, what are some things that you should have access to?
• Do any of your friends know that you engage in self-injury and do any of them engage in self-injury?  

If the client says "yes" when asked if they are having thoughts of self-harm, you want to follow up with, “in what ways”? You want to get the idea of the frequency of these thoughts if they are engaging in any type of behavior.  Be very straightforward in asking those questions. As a social worker especially you need to manage your reaction to those questions because clients are good at picking up other peoples' reactions and emotions. You need to stay neutral throughout that assessment process because sometimes if you have a big reaction or if the client can tell that it's upsetting you, then maybe they'll stop talking.

There are some clients that don't get attention in an appropriate way. That's the way I like to reframe manipulative behavior or attention-seeking behavior because this is someone who needs attention, but they're going about getting it the wrong way. There are some clients that if they know they're getting a reaction, may escalate things a little bit more and so the social worker managing their reactions during this can be very helpful. 

Ask your client if they are having those thoughts of dying or have they ever harmed themselves in the past and then giving examples to maybe lower the shame. Have you cut? Have you hit things? Have you banged your head? That is a way to get an idea from the client of what ways they've harmed themselves in the past.

The question regarding asking the client if you're feeling unsafe and what are some things they should not have access to should be asked when the client is calm and in a positive space. They will be more likely to give you good information. For example, "Oh yeah, so when I am upset I pens, so I don't need to have access to pens because I'll break them.

You will notice as a clinician that it can be very difficult to safety plan with someone when they want to harm themselves because often people can be very creative in finding things.  That's where partnering with the families and/or partnering with whatever setting they're in to try to promote safety is very important. Often clients want to learn new skills because the scars can sometimes be a negative reminder to them. Some people are triggered by their scars. It is important to find ways to partner with them and get an idea from them of what maybe they shouldn't have access to if they're not feeling safe. Ask them if they have any friends that engage in self-injury because often individuals that are engaging in this type of behavior come from a friend group that maybe is lower functioning emotionally and may have other friends that are also engaging in this type of behavior. I found it helpful to get an idea of who do they want to talk to when they're feeling that way and who talks to them if they're feeling that way because often that can trigger the individual that you're working with if someone else is having thoughts of self-harm. That client may talk them through it, but now they're feeling triggered to self-harm. I've often encouraged, especially when working with teens or kids, if someone does reach out to them having those thoughts, letting that friend know that they're going to have to notify an appropriate adult to make sure that when they themselves are already struggling with managing emotions aren't having more than they can actually handle. 

Reasons Why People Engage in Non-Suicidal Self-Injury

If you don't get anything else out of this course, this is the one thing that I want to make sure that you all get. Self-injury always serves a purpose for the individual and the best treatment is going to be to locate the source of that pain. In our work, if we get them to stop the behavior without locating their pain, they will replace it with something else. They'll replace it with substances or they'll replace it with risky behaviors because they're going to try to find a different way to cope. 
It may be in midst of a conflict that triggers negative self-talk. If we can increase his or her ability to tolerate that conflict or help him or her strategize around those situations, that's often one of the best things that can help with this type of behavior. For example, when difficult conversations do happen, if the family can be mindful of this client's emotions or if it's an adult and they know when they get negative feedback from their boss, that's a trigger, that will help. 

In psychoeducation with families or with loved ones with non-suicidal self-injury, I like to explain the biology of it because often they don't get it. They don't understand why someone would hurt him or herself. That's when they say words like, "That's crazy," and that's where you, being the professional come in and say, "Well actually, when we hurt ourselves the body releases endorphins, and those positive thoughts actually do make you feel better. If our bodies didn't work that way, "we would die from a paper cut." So when someone does hurt themselves, the body does release endorphins, and sometimes people have a high tolerance for pain or they build up a tolerance for pain. Educating families helps them understand what's going on can often help them support the individual they're working with.

Sometimes families will think it's just a phase. They may think it is something they do at 12 or 13, but for some people, it's actually more of a cycle than linear behavior where you start and then stopped. For some people it's okay, they start, and then they don't engage in behavior for two or three months. Then they start the behavior again and then they stop for six months. The behavior starts again and becomes more of a cycle for some people. For a lot of people, the thoughts continue. So even if they stop engaging in the behavior, the thoughts may come and go. I have one person that I check in with because those thoughts come when they're stressed. They're still in high school and we usually meet once a month, but around exam time we meet twice a week or we might meet once a week. They're not engaging in the behaviors, but coming to sessions helps when they've had an increase in stress.

It's important to understand the function of the behavior before removing this negative coping skill. 

Distraction

Sometimes it can be a distraction from emotions, from painful thoughts or memories, and/or from environmental issues. This is very common with homes that have high conflict or relationships with high conflict or with trauma survivors. For individuals that are experiencing flashbacks or if they're triggered in some way in their environment, self-injury may be a form of distraction.

Manage Emotions

Self-injury may be a way to manage difficult emotions. For some people, it's when those emotions get to a place that they can't manage. They might engage in this behavior to ground themselves and to help them get back to a more stable place, or some people if they're not feeling anything, might engage in the behavior to lift up emotionally. 

Self-Punishment

For some people, self-injury is a form of self-punishment. That's very common with individuals with very low self-esteem, very low self-worth, a lot of guilt and shame. If we know this is what's under the behavior that'll direct our treatment.

Control

For some people, it's about control. It's about being able to control.  "I can't control what school I go to or what family I'm in, but I can control engaging in this behavior." 'Often people will feel that there is no one that can make them stop the behavior and so if I know it's about control, (which is also very common with eating disorders and sometimes with trauma) finding other ways for them to have appropriate control might be an intervention that I would use with an individual like that.

Express Things That They Cannot Put Into Words

It may be a way to express things that they can't put into words. For example, you may see someone talk about seeing the mark or seeing the blood or seeing what happened was a physical expression of an emotion or of things that they could not put into words. Depression, anxiety, and loneliness aren't things other people can always see and so sometimes people want a physical representation. 

Relieve Tension and/or Anxiety

It may be a way to relieve tension or anxiety.

Relieve and/or Fully Express a Negative Emotion

It may be a way to relieve or fully express an emotion like anger or depression

To Feel Real by Feeling the Pain or Seeing the Injury

For some people, they may describe it as a way to feel real. It is similar to that of emotional numbing. It is very common with trauma survivors when they're having disassociation; when they're disconnecting from reality. Sometimes I've heard clients say that they almost feel like they're coming outside of themselves and self-injury helps bring them back to their body. We will talk later about grounding techniques and finding healthier ways to help them feel real can be very helpful.

Purify/Punish Self

Some people along with punishing themselves might talk about self-injury as a way to purify themselves. I had one situation where the person felt it was part of their religious expression. In talking with their family that was of the same religion, the family was like, "No, that's not a way." The person was using scriptures and focusing on the punishment part, but that wasn't even within their religion. Their religion wasn't telling them to harm themselves. If you are working with someone and if there is a question of whether this is a religious thing, you may get a release to partner with their religious leader or with their family so you can check in to see if this is a common thing within their religious expression. 

Nurture Self or Recieve Nurturing 

It may be a way for them to nurture themselves or to seek nurturing or support. For example, having to clean the wound or seeking help from someone may be a way that they're seeking their assurance.  We would try to find better ways to have them get that need met.

Boredom

Nothing to do can be a big trigger and that all of a sudden thoughts come up and then they engage in the behavior.  For those individuals, sometimes we've done a "bored jar" where we take a jar and fill it with things you can do when you're bored. If it was a behavior they would not engage in when they are by themselves, we can encourage them that when they get bored to go be around other people.   

Comorbid Presenting Issues

Comorbid presenting issues with non-suicidal self-injury:

• Low self-esteem and feelings of shame/worthlessness
• Trauma and dissociative symptoms/disorders
• Relationship problems and/or bullying
• Less dense social networks
• Mood Disorders/Depression/Anxiety
• Psychosis
• Mood Disorders
• Substance Abuse
• Borderline Personality Disorder

It's very common to see low self-esteem, feelings of shame or worthlessness, a history of trauma and/or dissociative symptoms, or dissociative disorder along with NSSI. Individuals that report relationship problems or possibly bullying are also common presenting problems to go along with self-injury. They tend to have those less dense social networks that were mentioned before where maybe all of their friends or a lot of their friends also engage in this type of behavior. Other common presenting issues include mood disorders, depression, bipolar disorder, disruptive mood dysregulation disorder, depression, and anxiety.  Non-suicidal self-injury and suicidal self-injury are very common within Borderline Personality Disorder.

Psychosis is also a common comorbid presenting issue with NSSI. With psychosis, I'd want to check to see if there are voices telling the person to engage in the behavior because of command auditory hallucinations. If they do have psychosis, are they hearing voices that tell them to harm themselves? For some people with psychosis, it's not that the voice told them to harm themselves. It's that the voice triggered thoughts of "you're nothing, you're not worth anything" and the voice triggered negative thoughts and negative emotion which then they engaged in NSSI.

If the person was not feeling as if they were in reality sometimes, people engage in non-suicidal self-injury. We want to find other ways for them to ground themselves if they were having those types of thoughts. Like mood disorders, substance abuse typically reduces inhibition therefore reducing the things that people wouldn't do sober but may do under the influence. Someone that's great about managing their thoughts when they're sober, under the influence they might be more likely to engage in that type of behavior.

Safety Planning

Identify an Adult that the Client will Tell if They are Having Thoughts of Self-Injury

If you're working with someone that is having these types of thoughts, you'll want to make sure that they're being monitored and that there's some type of safety plan in place. They need to identify a safe adult and if it's a child or teen, it'll have to be their parent. They might identify some additional adults because they may not have a great relationship with their parents. For example, they may have a good relationship with an aunt.  The child/teen will agree that if they're having those thoughts to reach out to the aunt. The aunt would appropriately support the family and would make sure that the parents are aware.

Discuss if Anyone Else in the Client's Friend Group Engages in Self-Injury and Encourage Client/Family to Set Boundaries in Those Relationships

The reason why I mentioned always using an adult versus another child or teen is that kids and teenagers want to tell a friend and that places too much on another peer, on another child. As I mentioned before, it is very common that a child/teen surrounds themselves with another person that has those similar thoughts. It may trigger him or her too and we are not always sure that a child will appropriately follow up with the family. Discuss if there's anyone else in the child's friend group that's engaging in this behavior and encourage the family to set appropriate boundaries within those relationships. That maybe they can continue those relationships, but setting up that, there's someone, an adult can be notified if maybe that friend is in a bad space. 

Identify What Things the Client Should Not Have Access to When Upset

Identify things that the client should and shouldn't have access to when they're upset by asking the client and family. 

Door Open When Upset

This is just mine that I typically use, a rule with families in crisis is if you're upset the door's open, just making sure that kind of, because typically people won't engage in behavior out in the open. Every now and then you will find individuals that do engage in the behavior at school in class, but it's more common in a private setting. Having the door open also makes it easier for the family to check on the client and to maintain appropriate supervision if they are upset.

Typical Safety Planning 

Doing those typical safety planning things, so Locking up sharps, weapons, knives all fall under typical safety planning.  If the client is in crisis, making sure they don't have access to the pins or whatever those things that they've identified they shouldn't need access to when they're upset.

Identify Their Positive Coping Skills

Have them identify their positive coping skills  What are those things that do work? 

Sometimes you'll get clients that say, "Coping skills don't work for me, "they don't work for me." I like to say that it has to match the size of your problem. For example, if I have something really bad happen in my life, deep breathing isn't big enough to fit the size of that problem. Sometimes just crying or talking with someone will work. Maybe there are certain things that will work with the size of that problem. Appropriately discuss with your client that it's not that the coping skill doesn't work, it's that maybe it didn't work in that situation. It wasn't the right fit for that specific situation and that takes some of the personal blame out of it (because often these clients already struggle with self-esteem and self-blame). The family may ask the client, "why didn't you use your skills?" It is important to figure out ways to help empower them in those difficult times. You want to be able to replace the behavior with something more positive because we don't want to take it away and then leave them with nothing.

Signs of Self-Harm

If you see any of these signs below, you just want to check-in and ask questions.

• Unexplained marks or injuries/bandages
• Long sleeves when it is warm outside
• Marks in private areas
• Covering wrists or forearms
• An injury does not match the explanation

When a client comes in and they have some band-aid or they have a mark that I can see I just say, "Hey, what was that?" If they keep having marks that are unexplained, I am then wondering if I am getting the whole story with this situation. For some people, another sign is wearing clothes that don't match the weather.  For example, wearing long sleeves even when it's warm outside. That doesn't always mean a sign of self-harm behavior because there are some places especially in schools, schools are cold inside but really hot outside.  If you're seeing it a lot, it's just something to follow up on, especially if the family is like, "Oh yeah, "we haven't seen their arms in weeks," or, "We never see this or that."

Family might report marks on private places or covering the wrist or forearms with some type of maybe band.  You may have clients that describe the injuries, but they don't match the explanation. For example,  you might see marks that look like they were done with some type of sharp object, but then the client says they ran into a wall.

Educating Clients, Parents, and Families

Review Myths, Facts, and Reasons Why

One of the first things that I like to do is educate the clients and families by reviewing the myths and facts of why people may engage in self-injury. If you Google "myths about self-injury," or "facts about self-injury," often there are some PDFs that were already created that you can have when you're working with these families.

Place of Understanding Why 

When issues like this do come up, you want to start from a place of understanding and from a place of curiosity such as "help me understand". Try to locate that pain because often, the families just want the behavior to stop. They feel the individual is in therapy so that they just stop the behavior.  Therefore, it's important to educate them that the first step is to figure out "why the behavior" because if we make them stop without understanding "why", we may end up dealing with something else down the road.

Addictive Quality

It is important to talk with families and clients about that addictive quality if they're experiencing that.  So clients do not.  The client may have done it a few times because their friends were or they did it to fit in with the friend group. Those are clients that will not need treatment for very long because they will often agree not to engage in the behavior again if they never have to come to therapy again. Those clients may not have those deeper issues and it was just a peer issue.

Appropriate Emotional Expression

Find an appropriate expression of emotion. Clients often come from overly expressive or invalidating environments.  If they're in a family where emotions aren't expressed appropriately, educating the whole family on emotional expression is needed.  Education should include that emotion is okay; we just don't hit, kick, scream, harm ourselves, and we don't harm others. There are times when we have to have that discussion with the family that are overly expressive.  For example, maybe when the parents get upset, they're also yelling, screaming, throwing things. Every now and then you'll have situations where a parent may also engage in self-injury, which is very concerning. It is important to figure out how to best support that family with the resources available to you within your community.

Sometimes clients come from invalidating environments where emotions are not allowed. Educating the family on validating emotions is important then. Sometimes I like to use a fun way to educate the family where I tell parents, "I don't know what's wrong with these kids, but I know something that works". Validating their experience is key. For example, when the child/teen comes home from school saying, "I've had a bad day," follow up with "Oh, what happened"? Instead of saying, "let me tell you about my day" and "I don't know how your day could be bad, all you did was go to school". That's invalidating language that then makes it, "Okay, well that day wasn't bad enough, how bad does my day need to be for me to get support?" Then that is where sometimes individuals start to exaggerate stories and catastrophizing because they're trying to get the family to say, "Aw, that stinks. Aw, you had a bad day, tell me more."

Skills Deficit Versus Manipulation

Talk about the behavior as a skills deficit versus manipulation. This is a reframe because if the family is viewing that it is manipulation, they will be extremely frustrated with the child or adult (whoever is engaging with the behavior). However, if you educate the family to look at it as a skills deficit, you can change their mindset to viewing it as, "This person "if they had the skill to get their need met, they would use it." This is where we just need to teach them a skill.

When viewing it as manipulation, parents are more likely to say, "Oh, you're just doing this because you want attention," instead of looking at it and saying, "okay, what are some more positive ways that we can help him or her get attention?" How can we teach the individual that they can get his or her needs met without engaging in these behaviors. This comes from the work from dialectical behavioral therapy that we'll talk about later in the course. 

Dangers of Self-harm

• The dangers of self-harm include infection. We may have safety planned at home, but someone at school could giving them sharps or other things they're also using to harm themselves which could lead to a risk of infection.
• There can be a link between self-harm and suicide. Just because someone is having non-suicidal self-injury doesn't mean that there is not a need for a referral of psychiatric hospitalization because maybe this is practice for thoughts down the road. 
• Assessing for self-harm and suicide can be important. Sometimes people can accidentally harm themselves more than they intended to.  This is why it is important to get them to reduce the behavior with the goal to eventually stop the behavior.   

To Hospitalize or Not Hospitalize

Clinical decision with client, family, and mental health provider.  The question of to hospitalize or to not hospitalized for psychiatric care is a clinical decision that's made with the treatment team as an outpatient provider, or if you're within a school setting you would seek consultation with your director. There are times that the person had non-suicidal self-injury and they contract for safety. The person comes from a very supportive family that can keep him or her safe; they have outpatient in place and then the recommendation may be to continue to maintain them at home.

On the other hand, there may be a situation that is more of a concern.  The client's behaviors have been escalating.  There may be non-suicidal self-injury, but there's also some psychosis.  The recommendation, in this case, would be to hospitalize. Each situation will be different. Hospitalization does not always occur if there is that non-suicidal self-injury because within psychiatric hospitals people are exposed to people non-suicidal self-injury.  I've had clients learn about self-injury in the hospital because they talked with their peers. 

Inquire about the media that they're watching and the effect that that media has on them. There are certain series that show self-harm, both suicidal and non-suicidal self-injury. Sometimes viewing that media can trigger clients and that's why when I'm working with clients I ask them, "What are you watching on Netflix? "What are you watching on Hulu or on TV?" Follow up to get more information. "How does that make you feel? "Does that trigger things for you?  For some people it does, for some people, it doesn't. Certain songs can sometimes help people feel better.  Educate the family that sometimes very dark depressing songs actually validates the client's emotions where the music makes him or her physically feel better. For example, I've listened to a song with the client if it was appropriate.  If it's an appropriate song, we sometimes listen to it in session.  It doesn't lift my mood, but for them, they connect with the song and they connect with the artist. Educate him or her to be mindful that on this day the music may work for you, but on a different day, it might not, and need to switch to something different. 

If there is a significant physical injury such as a deep cut or a broken hand, an Emergency Room visit may be warranted.  They will typically be assessed for mental health issues while they're at the hospital especially if they are going there after engaging in some form of self-injury. It will be up to the hospital staff if they admit them to the hospital or not. If you're part of that team that's where just consulting with the doctor, consulting with the team about the recommendations for that individual case. And then helping the client and family set those appropriate boundaries. 

Addiction Model

There is conflicting research that I found about whether non-suicidal self-injury is a behavioral addiction, but I've had many clients describe it that way.  I've had clients come in and say, "I've been clean from self-harm for three months," or they'll describe it as feeling like they got the urge to engage in the behavior and then got that release. Sometimes they will describe it in addictive terms. If clients use that type of language, I often connect with some type of motivational interviewing or maybe we look at a 12 step system for treating non-suicidal self-injury.

Motivational interviewing takes a look at what stage are they in.  Are they in that pre-contemplation phase where "this isn't a problem"? Are they in that contemplation phase where "yes, this is a problem"? There are specific interventions to help them get to a different stage. If you are doing substance treatment with an individual that has non-suicidal self-injury, (because it's all about coping) there may be some comorbid things happening at the same time that may be using the same treatment that you're using for the addictions may actually help support the behavior of non-suicidal self-injury as well. 

There is also an approach called harm reduction instead of harm elimination where the goal is to reduce the behavior. I work with kids and teens and my goal is always no behaviors, but if I have a client that's engaging in the behavior every day then sometimes the initial goal is to get those numbers down and see if we can reduce that behavior. Encourage when they didn't engage in behavior and ask what helped not perform that day? And the goal, to be seeing the number go down. Harm reduction comes out of that addiction space where sometimes they gave people clean instruments to inject themselves to reduce the risk of having some type of infection and so that's where you'd have to research if harm reduction was something that you thought would be helpful within your scope of practice. Because I work a lot with kids and teens, I typically use it as an overarching where, yeah, the goal's gonna be zero, but nobody's gonna be mad if you did engage in the behavior because we're gonna talk about what was the trigger? What skills did you try? If you were able to do a skill before engaging in the behavior? And then maybe resetting the clock of all right, so now we're gonna restart from here and can you agree to not engage in behavior until this next session? 

Grounding Techniques

Grounding techniques are very helpful if the individual has dissociative symptoms and they're engaging in this behavior or feeling outside of their body (that emotional numbing where they're not feeling real).

Examples of grounding techniques are:

• Using the Senses. The five things you see, four things you feel, three things you hear, two things you smell, and one thing you taste. If you are working with a very young client or cognitively limited client, you might just say three things you see, three things you hear, and three things you taste. Their emotional brain is overly stimulated and grounding techniques can help calm that emotional part of the brain where they can feel more grounded in reality, more grounded in their body. This is a great technique to use in sessions with a client who is becoming escalated but their energy really isn't. I describe it as they're way outside their body and sometimes I will say "all right, let's stop. Can you feel where you are?  Let's try a technique".  Grounding techniques can be a great option that the client can use both in session and outside of the session. 
• Butterfly technique.  Draw a butterfly on the place that they want to harm and the goal is to protect the butterfly; don't hurt the butterfly.  The butterfly technique also works with other animals, images, or the name of someone in their family they care about. I've edited that to say write the name of your favorite sister or your favorite sibling and then protect your sibling in the space where they would want to engage in the self-harm. That works better sometimes because often they really don't care about the idea of harming themselves, but the idea of harming something that they care about or harming someone else can be very helpful. You want to partner with the families, especially if you're working with kids or teens, so that they know what it's for and that they'll allow them to write on themselves.
• Apps. There's one app called Calm Harm and it's by the app Calm. They have one specifically for people who are having thoughts of self-injury. There are also lots of other apps. Kids, teens, and adults typically have their phone close to them.  If they're having those thoughts, to have a quick app that they can open can help them with managing those thoughts. 

Dialectical Behavioral Therapy Skills Training

Dialectical behavior therapy (DBT) was developed by Marsha Linehan. 

DBT skills training is where you learn about the skills training and you teach clients specific skills.  Those skills include: 

• Mindfulness Skills
• Emotion regulation skills
• Distress tolerance
• Interpersonal effectiveness skills 

There is a list of different interventions that you can use for each one of those skills.

Some people who are fully trained to do DBT, offer the individual program, group therapy, and then also crisis intervention when needed. You don't want to say that you're doing DBT if you don't have a certification. I've completed multiple trainings on DBT and I teach clients skills and incorporate that within the treatment.  I don't have the DBT certification, so I don't market myself as a DBT therapist because that is a separate certification.  However, if you have received additional training on doing the skills involved in DBT, that can be something that you incorporate into practice. I found it to be helpful, especially in working with this population.

Other Types of Treatment

There are lots of other effective treatments. Cognitive behavior therapy to help them change how they're thinking is one of them.

Applied Behavior Analysis (ABA) can work with individuals that have autism, developmental disorders, or intellectual disabilities. Helping families find something else to replace the behavior within that behavioral paradigm is key because sometimes the individual will be triggered by "no" and not getting their way.  Families will then give them their way so that they don't engage in the behavior, but that actually reinforces the behavior and so you need to figure out ways to create safety while you're trying to have the family set appropriate boundaries. 

Eye Movement Desensitization and Reprocessing (EMDR) is a treatment program that you have to get additional training in and but it's very effective based on research with helping individuals.  During this program, you're locating that pain and with that pain are the trauma flashbacks or issues that are trauma-related.  EMDR is very effective.

There are some psychotropic medications that have been found to be helpful.  You will need to refer to a psychiatrist or their medical doctor to discuss different options regarding medications. Being aware is key because sometimes some medications can increase certain thoughts.  For example, the client starts a new medication and their self-harm thoughts have increased. You need to be aware of that and have them go back to their doctor to discuss the change in thoughts with the new medication. 

Resources

There are some resources here. There are lots of great books and training manuals and so I've listed some of my favorites, once again, I'm not affiliated with any of these, I don't get anything if you do check these out.

These are just some resources that I've used in working with this population.

• Treating Self-Injury, Second Edition: A Practical Guide Second Edition by Barent W. Walsh  
• Helping Teens Who Cut, Second Edition: Using DBT Skills to End Self-Injury by Michael Hollander 
• Healing Self-Injury: A Compassionate Guide for Parents and Other Loved Ones 1st Edition by Janis Whitlock, Elizabeth E. Lloyd-Richardson 
• The Stop Walking on Eggshells Workbook: Practical Strategies for Living with Someone Who Has Borderline Personality Disorder (A New Harbinger Self-Help Workbook)  by Randi Kreger, James Paul Shirley LMSW
• Stop Walking on Eggshells: Taking Your Life Back When Someone You Care About Has Borderline Personality Disorder by Paul T. T. Mason MS, Randi Kreger 
• Stopping the Pain: A Workbook for Teens Who Cut and Self Injure by Lawrence E. Shapiro PhD 
• Nonsuicidal Self-Injury, in the series Advances in Psychotherapy, Evidence-Based Practice by E. David Klonsky, Jennifer J. Muehlenkamp, et al. 
• Freedom from Self-harm: Overcoming Self-Injury with Skills from DBT and Other Treatments by Kim Gratz, Alexander Chapman, Barent Walsh (Foreword)

Summary

- [Katrinna] Thank you so much, Dr. Berry, for sharing your expertise with us. Social workers are trained in dealing with suicidal clients although social workers tend to have limited training on managing non-suicidal self-injury as clients. Therefore, it is very important that social workers recognize non-suicidal self-injury are able to identify common myths regarding self-injury and ultimately are able to appropriately assess safety plans and treat clients who present with non-suicidal self-injury. Please note that cultural competence is essential to our work as social workers. Therefore, we must be aware of the role of culture and diversity and its impact on practice. For more information regarding cultural competent practice, please review the NASW resource standards and indicators for cultural competence and social work practice. Again, thank you for joining us on Social Work at continued.com.

References

Refer to the course handout for a complete list of references. 

This text-based course is an edited transcript of the webinar, A Comprehensive Introduction to the Diagnosis and Treatment of Obsessive-Compulsive Disorder, presented by Johann D'Souza, PhD, LP, on January 5, 2026.

Course Overview

Obsessive-compulsive disorder (OCD) is a widely misunderstood condition, frequently reduced in popular culture to quirks of tidiness or orderliness. This course provides a clinically grounded introduction to the disorder, moving from common misconceptions through formal diagnostic criteria, symptom subtypes, and evidence-based assessment tools, before arriving at a thorough examination of the gold-standard treatment: Exposure and Response Prevention (ERP). Developed for mental health practitioners and other healthcare professionals seeking continuing education, the material draws on current DSM-5-TR criteria, published research, and clinical examples to build practical competence. By the end of this course, participants will understand what OCD is, how it differs from superficially similar conditions, and how to implement the fundamental stages of ERP with individuals across the lifespan.

This material is for educational purposes and does not replace clinical judgment or local policy.

Limitations/Risks

• OCD is a highly complex disorder that shares symptoms with several other disorders. This webinar is not a replacement for supervision, consultation, and specialized professional training for the diagnosis and treatment of OCD.
• This webinar does not constitute a clinical credential and does not include all OCD subtypes, comorbid conditions, treatment options, or treatment complexities.
• Treatment protocols and diagnostic criteria continue to evolve; this webinar represents current knowledge at the time of presentation.
• The stigma associated with mental health issues and specific beliefs about mental health and treatment vary widely across cultures. In some cultures, seeking mental health treatment is highly stigmatized, leading to reluctance in seeking treatment and/or participating fully in treatment. Therefore, practitioners should exercise cultural humility at all times with all clients.

Learning Outcomes

After this course, participants will be able to:

1. List the two primary symptoms of OCD.
2. Describe the differences between OCD, anxiety, and other disorders.
3. Explain three fundamental stages of Exposure & Response Prevention.

Common Myths

Before defining OCD precisely, it is useful to examine what OCD is not — because misunderstanding is widespread not only among the general public but within professional communities as well. Several persistent myths shape how people with OCD experience their disorder and the kind of help they seek.

One of the most pervasive myths is the idea that everyone is "a little OCD." There is a kernel of truth embedded here: many people experience recurring, intrusive thoughts from time to time. However, to receive a diagnosis of OCD, an individual must meet a clinical threshold of symptom severity and functional impairment that is uncommon for most people. The casual colloquial use of "OCD" to describe everyday preferences for order or cleanliness trivializes a condition that can be profoundly disabling.

A related and equally common myth is that OCD is always about hand washing, cleaning, or neatness. While contamination concerns and cleaning compulsions are among the more visible manifestations of OCD, they represent only one slice of the disorder's full range. OCD can present in ways that are entirely unrelated to cleanliness — for example, intrusive thoughts about harming a loved one, fears related to morality or religious transgression, or a vague but distressing sensation that something is "not quite right." Someone can meet full diagnostic criteria for OCD without ever engaging in cleaning behaviors at all.

Another myth holds that people with OCD are simply neurotic, eccentric, or beyond help. It is important to separate the person from the disorder: the unusual or distressing behaviors associated with OCD are products of the condition, not character flaws. With appropriate, evidence-based treatment, individuals with OCD can achieve substantial — often dramatic — symptom reduction and lead fulfilling, functional lives.

Perhaps the most clinically consequential myth is the belief that OCD can be treated by directly disputing or arguing against the dysfunctional beliefs driving it. Intuitively, it might seem that if a person is afraid of contamination, demonstrating that their fears are irrational should help. In practice, the act of counter-arguing, debating, or seeking logical reassurance tends to perpetuate OCD rather than relieve it. The obsessional cycle is not fundamentally a problem of faulty logic; it is a problem of avoidance and reinforcement — a distinction that becomes central to understanding why ERP is the treatment of choice.

Similarly, OCD is not simply a reflection of unresolved psychodynamic conflicts or childhood trauma. Stressful or traumatic experiences can certainly exacerbate symptoms or trigger their onset, but the current evidence base indicates a strong genetic predisposition that is primary to the disorder's development (American Psychiatric Association, 2022). Stressors can make it worse; they are not the root cause.

Finally, clinicians should be aware of how perfectionism can interact with OCD in treatment itself. Individuals with OCD tend to exhibit high rigidity and a low tolerance for uncertainty, and these traits can affect the treatment process. A patient may feel compelled to complete exposure homework "perfectly," inadvertently generating a new OCD cycle within the therapeutic work. Developing insight into this pattern — in both the patient and the clinician — is an important clinical competency.

Defining OCD

DSM-5 TR Definition

The formal definition of OCD in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision is straightforward at its core (American Psychiatric Association, 2022). Three criteria must be met:

• The obsessions or compulsions are time-consuming and/or cause clinically significant distress or functional impairment.
• The obsessive-compulsive symptoms are not attributable to the effects of a substance or another medical condition.
• The disturbance is not better explained by the symptoms of another mental disorder.

What this definition leaves open is precisely what obsessions and compulsions are — and here the clinical literature departs significantly from everyday usage of these words.

Differentiating Disorders

Obsessions

In everyday speech, describing oneself as "obsessed" with a hobby or interest typically implies enthusiasm and pleasure. In the clinical context of OCD, the term means something nearly opposite. An obsession, as defined in the OCD literature, is a thought, image, or urge that is unwanted, intrusive, persistent, and irrational.

Each element of this definition carries diagnostic weight. The thought component refers to verbal content in one's mind — for example, the phrase "I am going to harm my child" entering awareness without the individual having invited it. An image refers to a mental picture, such as a vivid visualization of violence against a loved one. The third component, urge, is more nuanced and not universally experienced by people with OCD. It refers to a vague, uncomfortable somatic or perceptual sense that something is "not just right" — that a shirt sleeve is positioned incorrectly, that shoelaces are unevenly tightened, or that a symmetry has been disrupted. This phenomenon has been labeled "not just right OCD," and it is experientially distinct from cognitive worry.

The quality of being unwanted distinguishes OCD obsessions from ordinary preoccupations. The teenager who thinks about cars constantly is not experiencing obsessions in the clinical sense, because those thoughts are welcomed. Intrusive means the thought enters awareness without being sought; persistent means it returns repeatedly despite efforts to suppress or ignore it. The final criterion — irrational or unrealistic — is what most cleanly separates obsessions from the anxious worries seen in other disorders. Even exaggerated everyday worries bear some relationship to realistic events. OCD obsessions frequently carry a superstitious or magical quality that crosses into the clearly implausible: "If I do not wash my hands exactly five times, my grandmother will become ill and die." This irrational character is not a moral failing; it is the signature of the disorder.

The distinction between urge and fear of urge deserves particular attention for clinicians. A patient who reports "an urge to stab my spouse" when chopping vegetables is almost certainly not experiencing an actual drive to harm. What the patient experiences is an unwanted thought or image, accompanied by intense fear that they might act on it. The internal drive to harm is absent — that is precisely what makes the thought OCD rather than intent. Part of effective treatment involves helping patients develop insight into this distinction.

Compulsions

If obsessions are the internal, involuntary dimension of OCD, compulsions are the behavioral dimension — the things the person does in response. Compulsions are repetitive behaviors or mental acts that an individual feels compelled to perform in response to an obsession in order to reduce or prevent anxiety or distress, prevent a feared outcome, or make something feel "just right." Critically, they are either not connected in a realistic way to what they are intended to prevent or are clearly excessive in nature (American Psychiatric Association, 2022).

Compulsions may be overt and behavioral — hand washing, checking locks, arranging objects — or they may be entirely covert mental acts, such as silently counting, reviewing memories, or generating counter-thoughts. The compulsion is a choice, even when it feels automatic or overwhelming to resist. When working with children, clinicians should note that younger patients may be unable to articulate the connection between their obsession and their compulsive behavior. Helping these patients map the relationship between trigger, obsession, anxiety, compulsion, and temporary relief — the OCD cycle — is an important early phase of treatment.

The most universal category of compulsion is avoidance: any behavior the person engages in to steer clear of the feared thought, image, or situation. Reassurance-seeking is the next most common, in which the person repeatedly seeks confirmation from a spouse, parent, or clinician that the feared outcome has not occurred or is unlikely to occur. Providing reassurance, while immediately comforting, feeds the OCD cycle in exactly the same way a compulsion does. Confessing, checking, and rechecking, and mental reviewing are additional common compulsion types.

Insight

A critical clinical concept in OCD is the role of insight (Steinberg et al., 2025). Insight refers to the degree to which an individual recognizes that their obsessional fears are not realistic — that what they are experiencing is OCD, not an accurate perception of the world.

Image: The insight spectrum in OCD ranges from absent/delusional (firm belief that fears are real) through poor to good/fair (recognition that symptoms reflect OCD), with lower insight associated with poorer treatment outcomes (Steinberg et al., 2025).

At one extreme is good or fair insight: the person recognizes that feared thoughts are symptoms of a disorder and are not realistic, even if they still feel compelling. At the other extreme is absent or delusional insight: the individual is firmly convinced their fears are real. This rare but severe presentation — in which a person may be unable to leave the home because they are certain a harmed child is concealed somewhere in the building, despite living alone — begins to approximate a psychotic-spectrum disorder in its phenomenology.

More clinically common is poor insight, found in approximately one-fifth to one-third of individuals with OCD (Steinberg et al., 2025). These individuals oscillate: most of the time, they suspect they have OCD, but a persistent doubt remains — "maybe this time it really is true." Poor insight is more prevalent in OCD than in other anxiety-related conditions and carries significant treatment implications. Lower insight is one of the strongest predictors of poorer treatment response, making its assessment and its gradual improvement through treatment a clinical priority. One mechanism by which ERP improves insight is through repeated, successful fear-facing: when a person repeatedly confronts feared situations and observes that nothing catastrophic occurs, they accumulate experiential evidence that progressively weakens catastrophic beliefs.

Common OCD Subtypes

OCD can manifest in a remarkable variety of ways, and the specific content of obsessions is highly idiosyncratic. Nonetheless, research and clinical observation have identified common groupings or subtypes that help practitioners recognize and assess the full range of the disorder's presentations (Jalal et al., 2023).

Image: OCD subtypes mapped by obsession type and associated compulsions, illustrating the breadth of presentations beyond contamination and cleaning (Jalal et al., 2023).

Contamination OCD involves fears of germs, chemical contaminants, or substances with aversive sensory qualities, such as greasy or sticky textures. The corresponding compulsions typically center on washing, cleaning, or avoidance of perceived contaminants.

Scrupulosity involves an excessive fear of offending God, acting immorally, or being in a state of spiritual transgression. This subtype is of particular clinical importance because the symptom content intersects with the patient's deepest personal values. A patient with scrupulosity may engage in constant mental review of their words and actions, wondering whether an ambiguous statement was a lie or whether a momentary lapse placed them in spiritual jeopardy. Effective treatment requires a clinician who understands and respects the patient's religious and moral framework rather than pathologizing it wholesale.

Harm OCD involves recurrent, unwanted thoughts about causing harm to others or being harmed oneself. As noted in the section on obsessions, patients with harm OCD do not experience an internal drive to harm — they experience an overwhelming fear that they might. Taboo OCD is closely related, encompassing thoughts of a sexual nature, including fears of being attracted to children or committing sexual abuse. Because of the profound shame associated with these thoughts, patients are frequently reluctant to disclose them even to their therapist. Clinicians who do not directly and non-judgmentally inquire about this symptom domain may be treating a patient with significant taboo OCD without realizing it.

Just-right OCD involves the pervasive sense that things are not in their correct state — not perfectly symmetrical, not properly ordered, not adequately arranged. The discomfort is more somatic or aesthetic than cognitive; patients often struggle to articulate what specifically is wrong, only that something is not right.

On the compulsion side, avoidance is so universal that it can serve as a summary category for all compulsive behavior. Reassurance-seeking, confessing, checking and rechecking, repeating behaviors, and mental compulsions (internal reviews, counter-thoughts, neutralizations) round out the most common presentations (Jalal et al., 2023).

Other Related Disorders

OCD belongs to a broader family of conditions classified in the DSM-5-TR as obsessive-compulsive and related disorders, a grouping that reflects both phenomenological similarities and genetic relationships (Brierley et al., 2021). Understanding these related conditions helps clinicians think about comorbidity, differential diagnosis, and the broader context of a patient's presentation.

Image: OCD-related disorders sharing genetic and phenomenological features with OCD, including body dysmorphic disorder, tic disorders, illness anxiety disorder, body-focused repetitive behaviors, and hoarding (Brierley et al., 2021).

Tic disorders, including Tourette's syndrome, are among the most genetically proximate conditions to OCD. Vocal and motor tics — such as throat clearing or repetitive movements — are frequently comorbid with OCD, a pattern reflecting shared genetic architecture rather than coincidence.

Illness anxiety disorder (formerly hypochondriasis, often called health anxiety) involves excessive, disproportionate fear of having or developing a serious illness. This can present as a distinct disorder or as an OCD subtype, and careful assessment is needed to determine the most appropriate conceptualization.

Hoarding disorder may present as one symptom among many in a person with OCD or as a standalone condition. Similarly, body dysmorphic disorder — characterized by preoccupation with perceived flaws in physical appearance — shares important features with OCD and is treated with many of the same approaches.

Body-focused repetitive behaviors (BFRBs), including trichotillomania (hair pulling) and excoriation disorder (skin picking), are the most prevalent conditions in this category. They share a driven, repetitive behavioral quality with OCD compulsions and present similar treatment challenges.

OCD vs. Generalized Anxiety Disorder

The condition most frequently confused with OCD in clinical and general settings is generalized anxiety disorder (GAD). The two disorders share a surface-level quality — both involve excessive, unwanted mental activity that causes distress — but differ in several important ways (American Psychiatric Association, 2022).

The ego-dystonic nature of OCD obsessions is particularly diagnostic. A person with OCD is distressed by their thoughts precisely because those thoughts conflict with who they are and what they want. A person with harm OCD who fears harming their child is not someone who wishes to harm their child — the thought is alien to their identity. By contrast, GAD worries, while excessive, are connected to things the person genuinely cares about: finances, relationships, health, and performance. The person with GAD worries about things they wish would go well; the person with OCD is horrified by things they desperately wish would not happen.

Additionally, the behavioral responses differ. OCD generates highly specific, often ritualized compulsive patterns — particular sequences, numbers, or types of behaviors tied to the specific obsessional content. GAD generates more varied behavioral attempts to cope, primarily reassurance-seeking and preparation.

A note on perfectionism: Perfectionism itself is not a DSM diagnostic criterion, but individuals with OCD tend strongly toward rigidity, a high need for certainty, and discomfort with ambiguity. A person can be highly perfectionistic without having OCD and can have OCD without being a perfectionist, but the two frequently co-occur. This overlap has clinical relevance because perfectionism can become a vehicle through which OCD infiltrates the treatment itself, as patients attempt to perform their exposure homework "correctly" in a way that becomes its own compulsion.

Assessing OCD

When Does OCD Appear?

OCD can emerge at virtually any point across the lifespan, from preschool through adulthood. Research identifies two particularly common onset windows: between ages 8 and 12 and between late adolescence and early adulthood (Stein et al., 2025; Ziegler et al., 2021). The stress-diathesis model offers a useful framework for understanding this pattern: individuals with a genetic predisposition to OCD will typically not develop the full disorder until they encounter a meaningful life stressor. For most people, the physiological and psychosocial changes of puberty represent sufficient stress to trigger symptom onset, even without any specifically traumatic experience. Parents of children later diagnosed with OCD often report noticing precursor traits — rigidity, perfectionism, difficulty with transitions — from early in their child's development, long before those traits crystallized into clinically significant OCD.

The gap between symptom onset and formal diagnosis presents a significant public health challenge. On average, individuals wait approximately 13 years from the emergence of their first OCD symptoms to receiving a diagnosis (Ziegler et al., 2021). The interval from diagnosis to treatment is further extended, averaging approximately a year and a half (Ziegler et al., 2021). The combined effect is that individuals with OCD may spend a decade and a half or more living with a treatable condition before accessing an effective intervention. Contributing factors to this delay include the disorder's stigma, the private nature of obsessional content, and widespread lack of OCD-specific training even among mental health professionals.

Assessment

The gold-standard instrument for OCD assessment is the Yale-Brown Obsessive Compulsive Scale (Y-BOCS), a clinician-administered tool consisting of a detailed symptom checklist followed by a severity scale with established research-validated diagnostic cutoffs (Scahill et al., 1997). The Y-BOCS is broadly accepted within the field as the preferred assessment tool — a degree of consensus unusual in mental health assessment, where many comparable disorders have numerous competing instruments. Administering the full Y-BOCS takes between 30 and 60 minutes, depending on the clinical context.

Image: Standard OCD assessment framework including clinical interviews, the Yale-Brown Obsessive Compulsive Scale (Y-BOCS), and its child version (CY-BOCS), the latter validated by Scahill et al. (1997).

The Y-BOCS serves two distinct functions. The symptom checklist component comprehensively surveys the full range of OCD symptom types, frequently helping patients recognize the breadth and interconnectedness of their symptoms — an exercise that is itself therapeutically valuable, since many patients have not previously understood their disparate experiences as manifestations of a single disorder. The severity scale component quantifies the impact of the obsessions and compulsions on the patient's daily life, providing a baseline against which treatment progress can be tracked. Re-administering the severity scale every few weeks allows clinicians and patients to monitor symptom reduction in a concrete, measurable way.

For younger patients, the Children's Yale-Brown Obsessive Compulsive Scale (CY-BOCS) provides a developmentally appropriate parallel instrument (Scahill et al., 1997). The CY-BOCS is child-assessed rather than purely clinician-administered, accommodating the developmental differences in how children report and understand their symptoms.

Comprehensive assessment goes beyond the Y-BOCS alone. Clinical interviews help identify comorbid diagnoses (which are common in OCD), assess the family environment (particularly important when working with children and adolescents), and develop a neuropsychological profile of the individual's cognitive and emotional functioning. For clinicians who need a briefer initial screen, shorter instruments such as the Florida Obsessive Compulsive Inventory (FOCI) can be administered quickly, though they do not replace the Y-BOCS for comprehensive assessment purposes.

Treatment

Research on OCD treatment is unusually well-organized and convergent. There is broad expert consensus that cognitive behavioral therapy (CBT) incorporating Exposure and Response Prevention (ERP) is the most effective treatment currently available (American Psychiatric Association, 2022). ERP alone produces symptom reductions of 60 to 80 percent. Pharmacotherapy, primarily using selective serotonin reuptake inhibitors (SSRIs), produces symptom reductions of approximately 40 to 60 percent. A third evidence-based option, particularly relevant for children, is Supportive Parenting for Anxious Childhood Emotions (SPACE), a parent-based approach found to be efficacious, comparable, and non-inferior to direct CBT (Lebowitz et al., 2020).

Image: Evidence-based OCD treatments including CBT with ERP (60-80% symptom reduction), SSRI pharmacotherapy (40-60% reduction), and the SPACE parent-based program (non-inferior to CBT; Lebowitz et al., 2020).

The relative advantages of ERP over pharmacotherapy deserve elaboration. While ERP and SSRIs are both effective, ERP yields benefits that persist beyond the treatment period, whereas pharmacotherapy produces benefits primarily while the medication is being taken. Withdrawal from medication typically results in symptom return. Additionally, SSRIs carry side effects and, in some cases, risks of physiological dependence. Clinical guidance generally favors initiating ERP as the first-line intervention. Medication is considered when: symptom severity significantly interferes with daily functioning; ERP alone has not produced an adequate response; symptoms are so severe that they prevent meaningful engagement with ERP; or the patient declines ERP.

The question of combined treatment has been examined in meta-analyses. The evidence suggests that ERP combined with SSRIs is marginally more effective than ERP alone, but the magnitude of the advantage is small and, in many studies, does not reach statistical significance. This evidence supports a stepwise approach: begin with ERP, add medication if needed, rather than defaulting to combination treatment from the outset.

The SPACE program merits particular mention because it inverts the conventional assumption that treating a child requires the child to be present in therapy. SPACE is a parent-based treatment in which the clinician works directly with parents — teaching them how to reduce accommodation of OCD symptoms and support the child's tolerance of anxiety — without necessarily seeing the child. Research has demonstrated that its effectiveness is comparable to direct CBT for childhood anxiety and OCD (Lebowitz et al., 2020).

ERP

Exposure + Response Prevention

Exposure and Response Prevention is a two-component protocol, and both components are essential. Removing either significantly reduces the intervention's effectiveness.

The exposure component involves deliberately and repeatedly confronting the thoughts, images, urges, situations, or stimuli that provoke obsessional distress. This is not passive or accidental contact with feared stimuli; it is intentional, purposeful, and structured. Exposures are most effective when designed to generate genuine discomfort, not a sterile or intellectualized approximation of it.

The response prevention component involves actively choosing not to perform the compulsion in response to the triggered anxiety. Rather than washing, checking, seeking reassurance, counting, or engaging in mental rituals, the person allows the anxiety to persist and observes that it naturally diminishes over time without any intervention. This process of riding the discomfort — commonly described as "riding the wave" — is the mechanism through which OCD loses its power. Performing the compulsion, even once, "spoils" the exposure by interrupting the anxiety's natural decline and reinforcing the false belief that the compulsion was necessary.

ERP Treatment

The ERP treatment protocol follows a structured, sequenced process (American Psychiatric Association, 2022):

• Psychoeducation about the diagnosis and treatment — helping the patient understand what OCD is, what ERP is, and why it works.
• Establishing treatment goals — clarifying what the patient wants their life to look like without OCD.
• Developing a treatment plan collaboratively — ensuring the patient has genuine ownership and investment in the process.
• Creating an exposure hierarchy or menu — listing the patient's fears in order from least to most anxiety-provoking, providing a structured roadmap for treatment.
• Practicing exposures in session — building the patient's confidence and correct technique before independent practice begins.
• Between-session practice (homework) — the primary driver of improvement, in which the patient independently conducts exposures in their daily life.
• Response prevention plans — developing specific strategies for managing compulsive urges when practicing independently.

Psychoeducation is not merely introductory. For patients who have never received an accurate conceptualization of their disorder, learning about OCD is itself a significant intervention. Clinicians often observe that patients experience relief simply from understanding that their seemingly bizarre or alarming experiences are recognized symptoms of a well-characterized disorder with effective treatment.

Establishing the exposure hierarchy is a collaborative process. The hierarchy typically begins with situations or stimuli that provoke only mild to moderate anxiety and progresses toward the most feared scenarios. This graduated approach (as opposed to flooding, which begins with the most difficult exposures) is the standard clinical recommendation. While flooding may produce faster results, most patients find a graduated approach more tolerable and are more likely to engage and persist in treatment.

The bulk of therapeutic change occurs outside the session, in the patient's independent practice. If the patient does not conduct exposures between sessions, symptom improvement will be minimal. This reality requires clinicians to invest significantly in building motivation, providing a clear homework structure, troubleshooting obstacles, and monitoring adherence.

The final stage — relapse prevention — is as important as the active treatment phase. Patients need a clear plan for responding when symptoms return, as they often do during periods of stress. A patient who understands that symptom recurrence does not mean treatment failure and who knows how to restart the exposure process independently has a fundamentally different prognosis than one who is discharged without this preparation.

Examples: Fear Learning and Safety Learning

The rationale for ERP rests on two contrasting models of how anxiety changes over time in response to feared triggers.

Image: Fear learning: repeated avoidance of a feared trigger causes the baseline anxiety level to rise over time, as each encounter-and-escape cycle reinforces the threat value of the stimulus.

Image: Safety learning: when feared triggers are faced without avoidance or compulsion, anxiety peaks and then naturally declines; with repeated exposures, each successive peak is lower, reflecting the acquisition of safety information.

When a feared trigger is encountered, and the response is avoidance or compulsion, anxiety spikes and then falls — but incompletely, returning to a baseline somewhat higher than before. Over time, repeated cycles of avoidance produce a gradual escalation of overall anxiety, so that the disorder becomes progressively more impairing. This is fear learning: the nervous system learns that the trigger is genuinely threatening because the person keeps running from it.

Safety learning is the alternative process, and it is the mechanism ERP is designed to cultivate. When a trigger is encountered, and the person does not avoid or engage in compulsion, anxiety spikes and may even increase briefly. But without escape, anxiety reaches its maximum and then declines naturally, following the physiological arc of an anxiety response. The next time the trigger is encountered, the anxiety peak is somewhat lower. Over many repeated exposures, the baseline anxiety associated with the trigger diminishes substantially. The nervous system has learned that the trigger is not genuinely dangerous — that the feared catastrophe did not occur. This is the informational foundation on which recovery is built.

ERP for OCD Hierarchy: Sample Case

The application of the exposure hierarchy is illustrated in the following example from a patient with harm OCD centered on the fear of poisoning a family member.

Image: Sample exposure hierarchy for harm OCD (fear of poisoning): steps progress from low-responsibility food contact (watching others cook) to high-responsibility direct cooking for family members, illustrating graduated exposure from least to most fear-provoking.

At the bottom of this hierarchy — the point of least anxiety — is watching a video of someone else cooking. This presents the feared context (food preparation) with minimal personal responsibility. As they progress upward through the hierarchy, the patient eventually reaches the highest level: cooking for their own family. At this level, the patient is directly responsible for the safety of loved ones — the maximal feared outcome. The hierarchy allows the clinician and patient to incrementally build evidence of safety, with each successful step reducing the overall threat valence of the feared scenario.

A critical clinical consideration is whether to use in-vivo (real-life) or imaginal exposures. In vivo exposures are more ecologically valid and closely replicate real-world conditions. However, some feared scenarios are impractical, impossible, or unethical to replicate in real life. A patient with a fear of harming a loved one cannot be asked to simulate that harm; a patient with a fear of jumping from a window cannot safely practice that fear literally. In these cases — which are common in harm OCD, taboo OCD, and other subtypes — imaginal exposures are used. In an imaginal exposure, the clinician guides the patient to vividly imagine the feared scenario in detail, using all five senses, sometimes incorporating a written script or trance techniques to deepen immersion. Imaginal exposures have several advantages: they can be conducted at any time, varied and extended beyond what real life allows, and adapted to feared scenarios that have no real-world analog. According to the presenter, imaginal exposures comprise the majority of exposures used in clinical practice.

Obstacles to Proper Diagnosis and Treatment

Despite the availability of highly effective treatment, many individuals with OCD go years or decades without receiving it. Multiple overlapping barriers account for this gap (Ziegler et al., 2021).

Stigma is a primary obstacle, especially when symptoms fall into taboo categories. A patient who is terrified that they might harm a child, commit incest, or act on a sexual thought they find abhorrent is profoundly unlikely to disclose that symptom without assurance of a non-judgmental clinical environment. The secrecy this engenders delays both diagnosis and treatment.

Lack of public awareness compounds stigma. Even when individuals suspect that their experiences might be symptoms of a diagnosable condition, they may not have access to accurate information about what OCD looks like, how it is diagnosed, or where to find help. Cultural context is relevant here as well: in communities where seeking mental health treatment is itself stigmatized, individuals may face significant social pressure against disclosure or help-seeking.

Lack of proper training among health professionals is a particularly consequential barrier. Research indicates that primary care physicians are no more likely than untrained laypersons to correctly identify OCD when it presents in their practice. This level of diagnostic miss among front-line healthcare providers means that many individuals who do seek care receive incorrect diagnoses or inappropriate treatment. Clinicians who work with OCD are encouraged to seek out specialty training rather than applying general anxiety treatment protocols, because the clinical presentation and the effective intervention differ meaningfully.

Difficulty finding specialists and financial constraints are interconnected practical barriers. OCD specialists with adequate training are not evenly distributed geographically, often have long waiting lists, typically charge higher fees, and frequently do not accept insurance. These structural factors disproportionately affect individuals with fewer resources, creating inequitable access to effective care.

Summary

OCD is a potentially debilitating mental health condition that affects approximately 2 to 3 million adults and approximately half a million children in the United States (Stein et al., 2025). Despite its severity and prevalence, it is highly treatable. CBT with ERP produces symptom reductions of 60 to 80 percent, making it one of the most effective interventions in all of mental health treatment. SSRIs and parent-based treatments offer additional evidence-based options that expand the range of patients who can benefit. At the same time, numerous barriers — stigma, limited professional training, geographic and financial constraints — prevent many individuals from accessing the care that could substantially relieve their suffering.

The goals of this course have been to provide participants with a foundation in what OCD is: its diagnostic definition, its two primary symptoms (obsessions and compulsions), its range of subtypes, and how it differs from related and superficially similar conditions. Participants have also been introduced to the fundamental stages of ERP, the mechanics of fear learning and safety learning, and the assessment tools used to characterize and track symptom severity. With this foundation, practitioners are better positioned to recognize OCD in their caseloads, to refer appropriately to specialists, and to begin building the specialized clinical skills that effective OCD treatment requires.

For additional resources, the International OCD Foundation (IOCDF) provides extensive educational material, clinician referral directories, and current research summaries at iocdf.org.

References

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787

Brierley, M. E. E., Thompson, E. M., Albertella, L., & Fontenelle, L. F. (2021). Lifestyle interventions in the treatment of obsessive-compulsive and related disorders: A systematic review. Psychosomatic Medicine, 83(8), 817-833. https://doi.org/10.1097/PSY.0000000000000984

Jalal, B., Chamberlain, S. R., & Sahakian, B. J. (2023). Obsessive-compulsive disorder: Etiology, neuropathology, and cognitive dysfunction. Brain and Behavior, 13(6), e3000. https://doi.org/10.1002/brb3.3000

Lebowitz, E. R., Marin, C., Martino, A., Shimshoni, Y., & Silverman, W. K. (2020). Parent-based treatment as efficacious as cognitive behavioral therapy for childhood anxiety: A randomized noninferiority study of supportive parenting for anxious childhood emotions. Journal of the American Academy of Child & Adolescent Psychiatry, 59(3), 362-372. https://doi.org/10.1016/j.jaac.2019.02.014

Scahill, L., Riddle, M. A., McSwiggin-Hardin, M., Ort, S. I., King, R. A., Goodman, W. K., & Leckman, J. F. (1997). Children's Yale-Brown Obsessive Compulsive Scale: Reliability and validity. Journal of the American Academy of Child & Adolescent Psychiatry, 36(6), 844-852. https://doi.org/10.1097/00004583-199706000-00023

Stein, D. J., Ruscio, A. M., Altwaijri, Y., Chiu, W. T., Sampson, N. A., Aguilar-Gaxiola, S., ... Kessler, R. C. (2025). Obsessive-compulsive disorder in the World Mental Health surveys. BMC Medicine, 23(1), 416.

Steinberg, J. S., Morris, S. H., & Jaffee, S. R. (2025). 'Excessive and unreasonable': The relation between clinical insight and clinical correlates and treatment outcomes in obsessive-compulsive disorder across the life course. Child Psychiatry & Human Development, 56(1), 192-200.

Ziegler, S., Bednasch, K., Baldofski, S., & Rummel-Kluge, C. (2021). Long durations from symptom onset to diagnosis and from diagnosis to treatment in obsessive-compulsive disorder: A retrospective self-report study. PLOS ONE, 16(12), e0261169. https://doi.org/10.1371/journal.pone.0261169

This text-based course is an edited transcript from a live webinar presented by Christina Marsack-Topolewski, PhD, MSW, LMSW.

Introduction

It is a pleasure to present this comprehensive overview of ADHD and its ethical and practical implications for clinical providers working with women. The number of women diagnosed with Attention-Deficit/Hyperactivity Disorder continues to increase, bringing to light a unique set of challenges and considerations. Women frequently manage a multitude of life responsibilities and demands, which can present significant daily hurdles when coupled with ADHD. Living with ADHD can affect nearly every aspect of life, including one's professional life, financial stability, educational pursuits, the experience of motherhood, and other interpersonal relationships.

Furthermore, for women navigating life with ADHD, these challenges can be compounded by the presence of co-occurring conditions. This article will provide a framework for understanding the distinct complexities and journeys that women with ADHD often encounter. It will also discuss various interventions, strategies, and resources designed to support women with ADHD and their loved ones, acknowledging that the impact of ADHD extends beyond the individual to their entire relational network.

Learning Outcomes

After engaging with this material, participants will be able to:

• Identify the characteristics, signs, and symptoms of ADHD in adulthood that are unique to women.
• Describe co-occurring conditions commonly experienced by women with ADHD.
• Explain practical and evidence-based strategies to support women with ADHD and their loved ones.

Limitations and Risks

Supporting women with ADHD can be complex, and their coinciding needs can be wide-ranging. This discussion will not cover every aspect of these topics. Therefore, continued and additional training and education on this topic are recommended. Treatment and approaches to support individuals with ADHD and other comorbid challenges do not coincide with a one-size-fits-all approach. Practitioners should engage in cultural humility at all times and acknowledge cultural variations in mental health and treatment. Adequate support often requires the use of a multi-disciplinary team to ensure comprehensive treatment.

What is ADHD?

According to the guidelines from the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5), the criteria for individuals ages 17 and older include:

“Frequent inattention, seen through at least five of the following, for at least six months, in a way that is inappropriate developmentally”:

• Careless mistakes and lack of close attention to detail
• Difficulty paying attention on tasks
• Does not listen when addressed
• Gets too side-tracked to finish chores or workplace duties
• Loses materials or equipment necessary for tasks
• Forgetfulness in daily living
• Difficulty in organizing tasks
• Easily distracted; daydreaming
• Difficulty or dislike of work that requires sustained mental effort
• Procrastination

(American Psychiatric Association, 2022)

Continued - What is ADHD?

Per the guidelines from the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5), the criteria for individuals ages 17 and older also include:

“Frequent hyperactivity and impulsivity, seen through at least five of the following, for at least six months, in a way that is inappropriate developmentally”:

• Fidgeting, squirming, tapping
• Leaves seat when expected to sit
• Running or climbing at inappropriate times, feelings of restlessness
• Inability to play quietly
• Is often “on the go” and/or “driven by a motor”
• Talks excessively
• Blurting out responses
• Trouble waiting for turn
• Interrupting, intruding in conversations

Note: Six or more symptoms of inattention and/or hyperactivity-impulsivity are required for children up to age 16.

(American Psychiatric Association, 2022)

These diagnostic criteria provide a foundational understanding of ADHD. However, it is crucial to recognize that the manifestation of these symptoms can differ significantly between genders, particularly in adulthood. For individuals over the age of 17, the presence of at least five symptoms in either the inattention or hyperactivity-impulsivity domain, persisting for at least six months in a developmentally inappropriate manner, is indicative of ADHD. The impact of these symptoms on daily functioning across multiple settings is also a key diagnostic consideration.

ADHD Symptoms

Other symptoms commonly observed include:

• Poor time management (e.g., trouble multitasking)
• Emotional dysregulation (e.g., frequent/chronic stress, constant state of worry)
• Low frustration tolerance
• Mood swings
• Challenges focusing on a task
• Difficulties coping with stress
• Temper

(Mayo Foundation for Medical Education and Research, 2024)

When considering ADHD symptoms in adulthood, particularly for women, the challenges often extend beyond the core diagnostic criteria. Poor time management, including difficulties with multitasking, can profoundly impact adult life, where demands are often high and varied. Emotional dysregulation, manifesting as frequent stress, constant worry, or mood swings, can significantly affect an individual’s well-being and relationships. A low frustration tolerance can lead to interpersonal difficulties, especially in demanding roles such as parenting. Many women with ADHD report feeling overwhelmed by the daily tasks required to manage a household and career, often leading to internal frustration and self-criticism. The inability to focus on tasks and difficulties in coping with stress further exacerbate these challenges, contributing to a sense of being perpetually behind or unable to meet expectations.

ADHD in Adults

These conditions are required, too:

• Before age 12, must experience several inattentive or hyperactive-impulsive symptoms
• The symptoms must impact the person in at least two settings
• Clear evidence that the symptoms “interfere with or reduce the quality of” the person’s social, school and work activities
• Another mental disorder doesn’t better account for the symptoms

(American Psychiatric Association, 2013)

For an adult diagnosis of ADHD, it is essential to establish a developmental history of symptoms appearing before age 12. This underscores the understanding of ADHD as a neurodevelopmental disorder. Furthermore, the symptoms must be pervasive, affecting the individual in at least two significant settings, such as home, school, work, or social environments. This criterion highlights the functional impairment caused by ADHD, distinguishing it from transient difficulties. The impact must be clearly evident in a reduction of quality in social, academic, or occupational functioning. Finally, it is crucial to rule out other mental disorders that might better explain the symptoms, although co-occurring conditions are common and will be discussed further.

Symptoms may be common in women

• Racing thoughts
• Talking excessively
• Difficulty maintaining relationships
• “A scarred and wounded self-esteem”
• Stigma associated with their condition

(Holthe & Langvik, 2017)

Research indicates that certain ADHD symptoms are more commonly observed in women. These include racing thoughts, which can contribute to anxiety and overwhelm, and talking excessively, which may be a manifestation of internal hyperactivity. Difficulty maintaining relationships is a significant concern, often stemming from challenges with consistency, emotional regulation, or perceived social missteps. Many women with ADHD report a "scarred and wounded self-esteem," resulting from years of struggling with undiagnosed or misunderstood symptoms, leading to feelings of inadequacy or failure. The stigma associated with their condition further compounds these emotional burdens, often leading to shame and a reluctance to seek help or disclose their diagnosis. These gender-specific manifestations are crucial for clinicians to recognize for accurate diagnosis and tailored intervention.

Struggles Associated with Dysexecutive Functioning & ADHD

Visible:

• Running late, not making deadlines
• Presenting as “scattered”
• Outward aggression, frustration

Invisible:

• Self-esteem and self-efficacy implications
• Loneliness and isolation
• Internal frustration
• Anxiety
• Depression

The challenges associated with dysexecutive functioning in ADHD can be categorized into visible and invisible struggles. Visible struggles are those observable by others, such as consistently running late, failing to meet deadlines, appearing disorganized or "scattered," and exhibiting outward aggression or frustration. These external manifestations often lead to negative feedback from colleagues, family members, and friends, reinforcing feelings of inadequacy.

Invisible struggles, though less apparent to others, are deeply impactful. These include significant implications for self-esteem and self-efficacy, as women with ADHD may internalize their difficulties as personal failings rather than symptoms of a neurological condition. This can lead to profound feelings of loneliness and isolation, as the effort to maintain relationships becomes overwhelming or as perceived failures lead to withdrawal. Internal frustration is a constant companion, a silent battle against one's own cognitive processes. Furthermore, anxiety and depression are frequently co-occurring invisible struggles, often stemming from the chronic stress of managing ADHD symptoms and the emotional toll of perceived failures and social misunderstandings. Recognizing both visible and invisible struggles is essential for a holistic understanding of the impact of ADHD on women.

Masking of Symptoms

May mask in the following ways:

• Avoid interrupting others (by being quiet)
• Compensatory strategies to support routines and organization
• Exhibit perfectionistic tendencies
• Mirror what others do (e.g., this is common to other conditions and masking)
• Try very hard to focus and be overly conscientious
• Engage in substance misuse (e.g., this may hide/manage their symptoms in social environments)
• Engage in socially appropriate sports and physical activities – which may also mask symptoms

Masking can diminish the adverse effects of ADHD. Masking can be exhausting.

Masking is a common coping mechanism for women with ADHD, where they consciously or unconsciously hide their symptoms to conform to social expectations or avoid negative judgment. This can manifest in various ways, such as deliberately avoiding interrupting others by remaining quiet, even when they have something to contribute. Many develop elaborate compensatory strategies to maintain routines and organization, which, while effective in presenting a semblance of order, can be incredibly draining. Exhibiting perfectionistic tendencies is another form of masking, as an intense focus on flawless execution can be an attempt to overcompensate for perceived deficits in attention or organization. Mirroring the behaviors of others in social situations is also common, allowing them to blend in and avoid drawing attention to their struggles.

The effort to try very hard to focus and be overly conscientious is a constant internal battle, leading to significant mental fatigue. In some cases, individuals may engage in substance misuse as a maladaptive coping mechanism to hide or manage their symptoms in social environments, seeking to calm racing thoughts or reduce anxiety. Furthermore, engaging in socially appropriate sports and physical activities can also serve as a form of masking, as these activities may provide an outlet for hyperactivity or a structured environment that temporarily alleviates symptoms. While masking can temporarily diminish the adverse effects of ADHD in social or professional settings, it is an incredibly exhausting process that can lead to burnout, increased anxiety, and a profound sense of inauthenticity.

Executive Functioning

Executive functioning refers to a set of cognitive processes that are crucial for controlling behavior and operating effectively in daily life. These functions act as the "orchestra conductor" of the mind, enabling individuals to plan, organize, reason, and problem-solve. For individuals with ADHD, particularly women, challenges in executive functioning can profoundly impact various aspects of their lives.

Consider the intricate process of planning a trip: it involves booking flights, coordinating layovers, checking luggage, navigating security, and arranging accommodation and transportation. For a woman with ADHD, these seemingly straightforward tasks can become overwhelming due to difficulties with planning, sequential thinking, and managing multiple steps. If children are involved, the complexity escalates further, requiring meticulous organization of their belongings, car seats, and schedules. The ability to foresee potential issues, prioritize tasks, and maintain focus throughout such a multi-step process relies heavily on intact executive functions.

When executive functions are impaired, even routine daily activities can become monumental challenges. This can lead to visible struggles, such as missed deadlines and disorganization, and invisible struggles, including low self-esteem, internal frustration, and social isolation. Understanding the specific executive functioning deficits a woman with ADHD experiences is paramount for tailoring effective interventions. The goal is to develop strategies and coping mechanisms that support these cognitive processes, enabling her to navigate daily demands more effectively and enhance her overall quality of life. This includes recognizing and capitalizing on her strengths, as many individuals with ADHD possess remarkable creativity, quick thinking, and the ability to generate novel ideas, which can be leveraged in various settings, particularly in the workplace.

Diagnosis

Women in adulthood are equally likely to be diagnosed with ADHD as men.

• Misdiagnosis
• Underdiagnosis
• Overdiagnosis
• Late-diagnosis (Long & Coats, 2022)

The diagnostic landscape for ADHD presents unique considerations for women. While childhood diagnoses show a significant male-to-female ratio (approximately 3:1, with 75% boys compared to 25% girls), this ratio tends to equalize in adulthood. This suggests a notable pattern of underdiagnosis in girls during childhood, potentially due to masking behaviors, differing symptom presentations, or societal expectations that often lead to girls’ symptoms being overlooked or misattributed. Consequently, many women receive a late diagnosis in adulthood, often after years of struggling with unexplained difficulties and accumulating negative self-perceptions.

The phenomenon of misdiagnosis is also prevalent, as ADHD symptoms in women can overlap with or be mistaken for other conditions like anxiety, depression, or bipolar disorder. Conversely, there is also a concern for overdiagnosis in some contexts. The implications of late diagnosis are significant; women may miss out on early interventions and the development of effective coping strategies, leading to a cumulative impact on their self-esteem, relationships, and professional lives. The elevated demands of adulthood, such as managing careers, households, and families, can make undiagnosed or unmanaged ADHD particularly challenging, with potentially severe consequences like job loss or financial instability. Therefore, increased awareness among clinicians about the unique presentation of ADHD in women is crucial for timely and accurate diagnosis.

Prevalence of ADHD

• Childhood prevalence: 7.8 to 9.5% of children in the United States (Polancyznk et al., 2014)
• Adulthood prevalence: 4.4% of adults in the United States (Kessler et al., 2006)
• Global estimates:

• Persistent adult ADHD (with a childhood onset) = 2.58% or 139.84M in 2020
• Symptomatic adult ADHD (regardless of childhood onset) = 6.76% or 366.33M in 2020 (Song et al., 2021)

The prevalence of ADHD varies across different age groups and global regions. In the United States, childhood prevalence ranges from 7.8% to 9.5%, encompassing both boys and girls. For adults in the United States, the prevalence is estimated at 4.4%. Global estimates provide a broader perspective: persistent adult ADHD, defined as having a childhood onset, was estimated at 2.58% or approximately 139.84 million individuals in 2020. Symptomatic adult ADHD, which includes individuals regardless of childhood onset, showed a higher global prevalence of 6.76%, affecting around 366.33 million people in 2020. These figures underscore the widespread nature of ADHD across the lifespan and globally, emphasizing the importance of understanding its impact on diverse populations, including women. The disparity between childhood and adult prevalence, particularly the equalization of gender ratios in adulthood, highlights the need for continued research and clinical attention to how ADHD manifests and is diagnosed in women.

Propensity of ADHD

• About 2.5% of adults have ADHD (Simon et al., 2009); keep in mind other estimates indicate adults with ADHD comprise 2-4% of the population.
• Men’s and women’s rates of ADHD
• Men’s and women’s rates of risky/impulsive behaviors are similar.
• Women with persistent ADHD tended to be less likely to have hyperactive symptoms and to drive recklessly, but women had more anxiety (Cortese et al., 2016).

While general estimates suggest that about 2.5% to 4% of adults have ADHD, the gender-specific nuances are particularly insightful. As previously noted, the rates of ADHD diagnoses tend to equalize between men and women in adulthood, a significant shift from the childhood prevalence. Interestingly, research indicates that men and women with ADHD exhibit similar rates of risky or impulsive behaviors. However, a study by Cortese and colleagues (2016) found that women with persistent ADHD were less likely to present with overt hyperactive symptoms and were less prone to reckless driving compared to their male counterparts. This subtle difference in symptom presentation further contributes to the underdiagnosis of ADHD in women, as their hyperactivity may manifest more internally as racing thoughts or excessive talking rather than overt physical restlessness. A notable finding from this research is that women with ADHD often experience higher levels of anxiety, which aligns with broader population trends where women are more frequently diagnosed with anxiety disorders. This increased anxiety can complicate the clinical picture, sometimes leading to ADHD symptoms being overshadowed or misattributed to anxiety alone. Understanding these gender-specific propensities is vital for accurate assessment and tailored therapeutic approaches.

Co-Occurring Conditions in Women with ADHD

Co-occurring conditions

Adults with ADHD have a greater likelihood to experience other co-occurring conditions.

• Anxiety
• Autism spectrum disorder
• Depression
• Bipolar disorder
• Substance use disorder

(Micai et al., 2023; Pehlivanidis et al., 2020)

The presence of co-occurring conditions is a significant aspect of ADHD in adulthood, particularly for women. Research consistently demonstrates that adults with ADHD have a substantially higher likelihood of experiencing other mental health conditions. Common co-occurring conditions include anxiety disorders, which often manifest as chronic worry, panic attacks, or generalized anxiety. Autism spectrum disorder (ASD) can also co-occur with ADHD, presenting a complex diagnostic picture where symptoms of both conditions may overlap or exacerbate each other. Depression, including major depressive disorder, is frequently observed, often stemming from the chronic stress, emotional dysregulation, and interpersonal difficulties associated with unmanaged ADHD. Bipolar disorder is another condition that can co-occur, making differential diagnosis and treatment planning particularly challenging due to the fluctuating mood states. Finally, substance use disorders are also more prevalent among adults with ADHD, sometimes used as a maladaptive coping mechanism to self-medicate or manage overwhelming symptoms. Clinicians must be vigilant in screening for these co-occurring conditions to provide comprehensive and integrated care. A recent meta-analysis by Micai et al. (2023) highlighted the elevated risks, noting that adults with ADHD face five times the risk of comorbid anxiety, 4.5 times the risk of major depression, 8.75 times the risk of bipolar disorder, and 4.6 times the risk of substance use disorder compared to individuals without ADHD. This underscores the critical need for a thorough assessment that considers the full spectrum of potential co-occurring challenges.

Many domains of life impacted

ADHD in women can profoundly impact numerous domains of life, often due to the elevated social, employment, financial, relational, and functional demands placed on adults. The expectation to juggle multiple roles and responsibilities can become immensely overwhelming when compounded by ADHD symptoms.

• School and Work Life: Challenges in academic and professional settings are common. This can include difficulties with organization, time management, focus, and meeting deadlines, leading to underperformance, job changes, or unemployment. A study by Biederman et al. (2021) found that adults with ADHD were less likely to be currently employed (52% vs. 72% of peers without ADHD) and experienced more job changes over a decade (5.4 vs. 3.4). They also reported less satisfaction with family, social, and professional lives.
• Social Challenges: Intimate relationships, friendships, and peer interactions can be strained. Difficulties with listening, impulsivity in conversation, or inconsistency in plans can lead to misunderstandings and relationship breakdowns. Morley and Tyrrell (2023) found that female university students diagnosed with ADHD in adulthood reported significant social, academic, and psychological difficulties, including stigmatization and social discrimination.
• Family and Parenting: For women who are mothers, the demands of parenting can be particularly challenging. Managing household tasks, children's schedules, and personal needs while contending with ADHD symptoms can lead to immense frustration and feelings of inadequacy. The constant juggle often results in a feeling of being "at the bare bones" in terms of daily functioning, as one client described it, struggling to keep even basic necessities like milk in the fridge.
• Sleep Quality: Poor sleep hygiene is frequently reported, which further exacerbates ADHD symptoms and negatively impacts overall functioning and well-being.

The cumulative effect of these impacts can significantly diminish a woman's quality of life, highlighting the urgent need for tailored support that addresses the multifaceted nature of ADHD in adult women.

Case Example #1

Married mother of 4 struggles with ADHD (diagnosed in childhood), OCD, and anxiety. Spouse does not “believe in” mental health conditions. A lot of shame surrounding challenges. Mother has developed many coping strategies – still difficult. Balancing work, house obligations, and child rearing is immensely overwhelming.

This case illustrates the profound complexities faced by women with ADHD, particularly when compounded by co-occurring conditions and unsupportive family dynamics. The client, a married mother of four, grapples with a childhood diagnosis of ADHD, alongside obsessive-compulsive disorder (OCD) and profound anxiety. A significant barrier to her well-being is her spouse's disbelief in mental health conditions, which creates an environment of shame and discourages her from seeking or utilizing necessary support, including medication or therapy. Despite having developed numerous coping strategies since her early diagnosis and achieving professional success, the immense demands of balancing work, household obligations, and child-rearing have become overwhelmingly challenging. The added pressures of children's illnesses, childcare issues, or school breaks further intensify her struggles, especially within a traditional household where domestic responsibilities are primarily hers. This scenario highlights the critical need for interventions that not only address the client's symptoms but also navigate complex family systems and societal expectations.

Case Example #2

Female in early 40s, twice exceptional. Has childhood diagnosis of ADHD, anxiety. History of an eating disorder. Recent divorce – now back to the workforce. Recently single (now single mother of 3 children). New work position acquired around the time of her divorce. Struggling with meeting and juggling the multi-faceted needs of work, motherhood, home life, food in fridge. FMLA.

This case exemplifies the compounding stressors that can overwhelm a woman with ADHD, particularly during significant life transitions. The client, a female in her early 40s, is "twice exceptional," indicating both giftedness and a neurodevelopmental diagnosis. She has a childhood diagnosis of ADHD and anxiety, coupled with a history of an eating disorder. Her recent divorce has thrust her back into the full-time workforce after a significant hiatus, adding immense financial and logistical pressure. Now a single mother of three children, she finds herself struggling to meet the multifaceted demands of her new work position, motherhood, and maintaining a functional home life, to the extent that even basic tasks like keeping food in the refrigerator become a struggle. Her anxiety is heightened, and she experiences daydreaming at work, impacting her ability to meet professional demands. The severity of her challenges has led her to explore options like the Family and Medical Leave Act (FMLA) to gain a temporary reprieve and re-stabilize. This case underscores the need for comprehensive, tailored support that considers the interplay of ADHD with past traumas, co-occurring conditions, and current life circumstances, emphasizing the importance of practical strategies and external supports to manage overwhelming daily responsibilities.

Shared Terminology

• Autonomy: Making informed, independent decisions. Having control over own actions, choices, and life.
• Self-determination: The ability to determine what is best for yourself without force or coercion.

In the context of ethical practice, understanding autonomy and self-determination is paramount when working with women with ADHD. Autonomy refers to an individual's capacity to make informed, independent decisions and to have control over their own actions, choices, and life. For women with ADHD, this can be particularly challenging due to the internal and external pressures they face, including societal expectations and the impact of their symptoms on decision-making processes. Clinical providers must work to nurture and foster a therapeutic relationship predicated on respect and empowerment, helping clients to understand their diagnosis and its implications within their multifaceted lives.

Self-determination is closely related, emphasizing an individual's ability to determine what is best for themselves without external force or coercion. In cases where a client's environment, such as a spouse who dismisses mental health conditions, undermines their ability to make choices about their care, clinicians must support the client in finding ways to exercise their self-determination, even if it means adopting more private or "close to the vest" coping strategies. The ethical imperative is to help clients recognize and build upon their strengths, providing hope and a framework that extends beyond the challenges of ADHD, while also acknowledging the gender-specific pressures that women with ADHD often navigate. This involves a delicate balance of validating their experiences, offering practical support, and advocating for their right to make choices that enhance their well-being.

Ethical Considerations & Complexities in Supporting Women with ADHD and their Families

• Balancing viewpoints and perspectives
• Self-determination and autonomy should be at the forefront of all conversations
• Strength-based approach
• Using the client at the forefront of planning and treatment
• Safety is key
• Dreams for now and the future
• What’s realistic and doable?
• Capitalizing on supports
• Using relevant formal supports
• Importance of support from informal support networks
• Robust social networks
• Community (reduction of social isolation and loneliness)
• Changing and evolving needs
• Women with ADHD
• Other supports and their capacity

Supporting women with ADHD and their families involves navigating a complex ethical landscape that requires careful consideration of multiple factors. A primary ethical consideration is the need to balance various viewpoints and perspectives, particularly when family members hold differing beliefs about mental health. The principles of self-determination and autonomy must remain at the forefront of all clinical conversations, ensuring that the woman's right to make informed decisions about her care is respected, even if those decisions diverge from external recommendations.

A strengths-based approach is crucial, focusing on identifying and leveraging the client's inherent abilities and resources. This involves placing the client at the forefront of planning and treatment, ensuring that interventions are tailored to her unique needs and aspirations. Safety is always a key consideration, especially when symptoms or co-occurring conditions might pose risks to the individual or others. Clinicians should also explore the client's dreams for both the present and the future, helping to establish goals that are realistic and doable within her current context.

Capitalizing on both formal and informal supports is vital. Formal supports include professional services, while informal support networks, such as friends, family, and community groups, play a critical role in reducing social isolation and loneliness. It is important to foster robust social networks, recognizing that the give-and-take dynamic of relationships is essential for long-term sustainability. The needs of women with ADHD and their support systems are constantly changing and evolving, requiring clinicians to remain flexible and adaptive in their approach. This includes assessing the capacity of other supports within the family unit to ensure that the burden of care is not unduly placed on any one individual.

Ethics & ADHD in Women

Code of Ethics – Ethical Principles

• Service
• Dignity and Worth of the Person

• Who decides?
• Right to decline treatment and other recommendations

• Importance of Human Relationships

(National Association of Social Workers, 2023)

The ethical principles guiding practice with women with ADHD are deeply rooted in core professional codes of ethics. The principle of Service emphasizes the clinician's commitment to helping people in need and addressing social problems. For women with ADHD, this means providing comprehensive support that extends beyond symptom management to address the broader impacts on their lives, including employment, relationships, and overall well-being.

The principle of Dignity and Worth of the Person is paramount. This involves recognizing and respecting the inherent value of each individual, regardless of their diagnosis. A critical aspect of this principle is acknowledging the client's autonomy and their right to self-determination. This raises questions such as "Who decides?" when it comes to treatment plans and life choices. It firmly establishes the client's right to decline treatment and other recommendations, even if the clinician believes they would be beneficial. This requires a delicate balance of providing informed guidance while respecting personal agency.

Finally, the Importance of Human Relationships underscores the significance of building strong, collaborative relationships with clients and their support networks. This principle recognizes that individuals are interconnected and that interventions are most effective when they consider the broader family and community context. For women with ADHD, fostering robust social networks and ensuring instrumental engagement with others can significantly enhance their quality of life and well-being. This also extends to the clinician-client relationship, which should be built on trust, empathy, and mutual respect.

Ethical Responsibilities to Clients

Social workers respect and promote clients' right to self-determination and assist clients in their efforts to identify and clarify their goals. Social workers may limit clients’ right to self-determination when, in the social workers’ professional judgment, clients’ actions or potential actions pose a serious, foreseeable, and imminent risk to themselves or others.

(NASW Code of Ethics, 2023)

(Principle E): Respect for People's Rights and Dignity: Psychologists respect the dignity and worth of all people, and the rights of individuals to privacy, confidentiality, and self-determination. Psychologists are aware that special safeguards may be necessary to protect the rights and welfare of persons or communities whose vulnerabilities impair autonomous decision making.

The ethical responsibility to clients, particularly those with ADHD, centers on upholding their right to self-determination. As outlined in the National Association of Social Workers (NASW) Code of Ethics, social workers are mandated to respect and promote clients' autonomy, actively assisting them in identifying and clarifying their personal goals. This means empowering women with ADHD to make choices about their lives and treatment, even when those choices may differ from professional recommendations. However, this right is not absolute; clinicians may ethically limit self-determination when a client's actions or potential actions pose a serious, foreseeable, and imminent risk to themselves or others. This requires careful professional judgment and a clear understanding of the boundaries of intervention.

Similarly, the American Psychological Association (APA) Code of Conduct, under Principle E, emphasizes "Respect for People's Rights and Dignity." Psychologists are expected to respect the inherent dignity and worth of all individuals, along with their rights to privacy, confidentiality, and self-determination. The APA code also acknowledges that special safeguards may be necessary to protect the rights and welfare of vulnerable individuals or communities whose vulnerabilities might impair their autonomous decision-making capacity. This is particularly relevant for women with ADHD, who may experience cognitive or emotional challenges that impact their ability to make fully autonomous decisions at all times. Therefore, clinicians must balance the promotion of self-determination with the responsibility to protect clients from harm, always striving to empower them while ensuring their safety and well-being.

Ethics & ADHD in Women

Code of Ethics – Ethical Responsibilities to Clients

1.02 Self-Determination

The principle of self-determination, as articulated in ethical codes such as the NASW Code of Ethics (Section 1.02), is a cornerstone of responsible clinical practice with women with ADHD. This principle mandates that clinicians respect and actively promote their clients' right to make their own choices and decisions. For women navigating life with ADHD, this means empowering them to identify their own goals and clarify what they want for their lives, rather than imposing external expectations or solutions.

In practice, this translates to collaborative treatment planning where the woman with ADHD is an active participant in setting her therapeutic objectives. It involves providing her with comprehensive information about her diagnosis, potential interventions, and available resources, allowing her to make informed choices. This also means respecting her right to decline certain treatments or recommendations, even if they are medically or clinically advised, provided her decision does not pose a serious, foreseeable, and imminent risk to herself or others. The clinician's role is to support her in exploring the implications of her choices, fostering her capacity for independent decision-making, and building her confidence in managing her condition. This ethical stance ensures that interventions are client-centered and uphold the dignity and autonomy of the individual.

Practical and Evidence-Based Strategies

Treatment Goals

• Ensure the recognition of strengths and use a strengths-based approach
• Start with the basics
• Develop effective strategies and coping mechanisms
• Support facets of life that are impacted
• Help clients move toward better physical and psychological functioning
• Provide support to address multi-faceted impacts of ADHD and other co-occurring conditions
• Seek pathways to elevate strengths and build self-esteem
• Enable clients to live full, meaningful, and rewarding lives

Effective treatment for women with ADHD is guided by several key goals, all centered on empowering the individual and enhancing her overall quality of life. A foundational goal is to ensure the recognition of strengths and consistently employ a strengths-based approach. This involves identifying and building upon the woman's unique talents, resilience, and positive attributes, fostering a sense of self-efficacy and hope.

Another crucial goal is to "start with the basics." This means addressing fundamental areas of functioning that may be impacted by ADHD, such as sleep hygiene, nutrition, and foundational organizational skills. By establishing a solid foundation, clients can build confidence and gradually integrate more complex strategies. The development of effective strategies and coping mechanisms is paramount, equipping women with practical tools to manage their symptoms and navigate daily challenges.

Treatment should also aim to support all facets of life that are impacted by ADHD, including employment, relationships, finances, and parenting. This holistic approach ensures that interventions are comprehensive and address the real-world difficulties clients face. A core objective is to help clients move toward better physical and psychological functioning, promoting overall health and well-being.

Furthermore, it is essential to provide support to address the multifaceted impacts of ADHD and any co-occurring conditions. This often requires an integrated approach that considers the interplay between various diagnoses. Ultimately, treatment goals should seek pathways to elevate strengths and build self-esteem, counteracting the years of negative self-perception that many women with ADHD experience. The overarching aim is to enable clients to live full, meaningful, and rewarding lives, recognizing their inherent worth and potential beyond their diagnosis.

Practical Solutions

• Understand unique needs, realities, and experiences of women and pair supports accordingly
• Help loved ones understand what ADHD is like and daily implications
• Focus on solving problems, being proactive
• Take breaks
• Exercise and physical activity
• Focus on strengths
• Family meetings – to help with communication and routines
• Establish and utilize routines
• Visual and auditory supports
• Maintain a healthy lifestyle
• Financial organization and money management
• Symptom management skills
• Prioritize sleep, self care, and well being
• Consider (when applicable) employment supports

Implementing practical solutions for women with ADHD requires a tailored approach that acknowledges their unique needs and experiences. Firstly, it is crucial to understand the specific realities and challenges women face and to pair supports accordingly. This might involve addressing the societal pressures of juggling multiple roles, such as career, motherhood, and household management.

Educating loved ones about what ADHD is like and its daily implications is vital. This can foster empathy and understanding, reducing blame and promoting a more supportive environment. Encouraging a focus on problem-solving and proactive strategies helps clients move beyond reactive responses to challenges. Incorporating regular breaks, exercise, and physical activity can significantly improve attention, mood, and overall well-being.

A consistent emphasis on strengths is essential, helping women with ADHD recognize and leverage their unique abilities, such as creativity, quick thinking, or hyperfocus in areas of interest. Implementing family meetings can improve communication and establish clear routines, which are highly beneficial for managing ADHD symptoms. Establishing and consistently utilizing routines, supported by visual and auditory aids, can provide much-needed structure and predictability.

Maintaining a healthy lifestyle, including prioritizing sleep, self-care, and overall well-being, is foundational for symptom management. Developing financial organization and money management skills is also critical, as ADHD can often impact financial stability. Specific symptom management skills, tailored to individual needs, should be taught and practiced. Finally, when applicable, exploring and implementing employment supports can help women with ADHD thrive in their professional lives, ensuring reasonable accommodations and strategies for workplace success. These practical solutions, when consistently applied, can significantly enhance a woman's ability to manage ADHD and improve her quality of life.

Consider Dynamics in Couples

NON-ADHD PARTNER:

• Feelings
• Behaviors
• Internal narrative

ADHD PARTNER:

• Feelings
• Behaviors
• Internal narrative

When ADHD is present in one partner, the dynamics within a couple can become particularly complex, impacting both the individual with ADHD and their non-ADHD partner. Understanding the distinct feelings, behaviors, and internal narratives of each partner is crucial for effective intervention.

For the non-ADHD partner, common feelings include anger, frustration, sadness, and disappointment. They may feel overwhelmed by the perceived disorganization, forgetfulness, or impulsivity of their ADHD partner, leading to resentment and a sense of carrying an unequal burden. Their behaviors might include nagging, micromanaging, or withdrawing emotionally. The internal narrative of the non-ADHD partner often revolves around themes of "I have to do everything," "I'm not being heard," or "Why can't they just try harder?" They may struggle to differentiate between intentional neglect and ADHD symptoms, leading to personalizing their partner's challenges.

For the ADHD partner, feelings often include shame, guilt, inadequacy, and frustration. They may feel misunderstood, criticized, or constantly "beaten down" by their partner's reactions. Their behaviors might include procrastination, avoidance, or defensiveness when confronted about symptoms. The internal narrative of the ADHD partner often involves self-criticism, such as "I'm not good enough," "I'm always letting people down," or "I'm trying my hardest, but it's never enough." They may struggle with emotional dysregulation, leading to mood swings or outbursts, which further strain the relationship.

Effective couples therapy for ADHD involves helping both partners understand ADHD as a neurological condition, not a character flaw. It focuses on developing communication strategies, establishing clear expectations, and implementing practical solutions for managing symptoms. The goal is to foster empathy, reduce blame, and create a supportive environment where both partners feel understood and valued, moving towards a more balanced and harmonious relationship dynamic.

Parenting with ADHD

Medications may not last long enough through the day so that moms can both work effectively at the office and do caregiving duties when they get home (Seay, 2022).

In the article, Terry Matlen, an ADHD consultant, recommended moms:

• Help their families understand what ADHD is like
• Focus on solving problems, not blaming
• Take breaks to cool down or re-energize
• Have family meetings and learn how to communicate
• Create routines

Parenting with ADHD presents a unique set of challenges for mothers, often exacerbated by the demanding nature of modern life. One significant issue is the duration of ADHD medication efficacy; many mothers find that their medication wears off before they finish their workday, leaving them unmedicated for the demanding caregiving duties upon returning home (Seay, 2022). This can lead to increased struggles with organization, patience, and executive functioning during critical evening hours.

Terry Matlen, a renowned ADHD consultant, offers valuable recommendations for mothers navigating these complexities. She emphasizes the importance of helping family members, including children and partners, understand what ADHD is like. This fosters empathy and reduces misunderstandings, shifting the focus from blame to collaborative problem-solving. Matlen also advises mothers to prioritize self-care by taking breaks to cool down or re-energize, acknowledging the immense mental and emotional toll of managing ADHD while parenting. Implementing family meetings can be instrumental in improving communication and establishing clear routines, which are vital for creating a predictable and supportive home environment. Routines provide structure that can significantly alleviate the organizational challenges inherent in ADHD, benefiting both the mother and her children. By adopting these strategies, mothers with ADHD can enhance their parenting effectiveness and improve overall family dynamics.

Potential Concerns for Women and their Families

• Shortage of medications and generic medication
• Are ADHD medications harmful? Role of medication
• Organizational challenges
• Listening skills
• Whether medication should be stopped during pregnancy

Several potential concerns can impact women with ADHD and their families, requiring careful consideration and clinical guidance. A significant issue that has emerged is the shortage of ADHD medications, particularly generic versions. This can lead to disruptions in treatment, increased stress, and difficulties in maintaining symptom control, profoundly affecting daily functioning and quality of life.

Another common concern revolves around the safety and role of ADHD medications, especially during sensitive periods like pregnancy. Women often grapple with questions such as "Are ADHD medications harmful?" and "Whether medication should be stopped during pregnancy." These are complex decisions that require thorough discussion with medical professionals, weighing the risks and benefits for both the mother and the developing fetus.

Beyond medication, organizational challenges are a pervasive concern. These can manifest in various aspects of home life, work, and personal management, leading to chronic stress, missed appointments, and a sense of being perpetually overwhelmed. Difficulties with listening skills, a common ADHD symptom, can impact communication within relationships, leading to misunderstandings and frustration for both the woman with ADHD and her family members. Addressing these concerns requires a multi-faceted approach that combines medication management (when appropriate), behavioral strategies, organizational tools, and open communication within the family unit.

Special Considerations for Motherhood while Navigating Life with ADHD

Motherhood, while profoundly rewarding, can be exceptionally challenging for women navigating life with ADHD. The inherent demands of raising children—from managing schedules and household tasks to providing consistent emotional support—can exacerbate ADHD symptoms and create significant stress.

• Organizational Structures, Routines: The need for robust organizational structures and consistent routines becomes paramount. ADHD can make it difficult to establish and maintain these, leading to chaos and overwhelm. Clinicians can help mothers develop practical systems for managing household chores, meal planning, and children's activities, often utilizing visual aids and reminders.
• Visual Supports: Visual supports, such as chore charts, visual schedules, and color-coded organizational systems, can be invaluable tools for both the mother and her children. These external aids reduce the reliance on working memory and executive functions, making daily tasks more manageable.
• Outside Supports: Leveraging outside supports is crucial. This can include formal supports like professional organizers, ADHD coaches, or childcare assistance, as well as informal supports from family, friends, or community groups. Delegating tasks and accepting help can significantly alleviate the burden.
• Divisions of Duties in the Household: Equitable divisions of duties within the household are essential, especially if a partner is present. Open communication about responsibilities, acknowledging the impact of ADHD on certain tasks, can prevent resentment and foster a more collaborative environment. For single mothers with ADHD, this might involve creative solutions for outsourcing tasks or building a strong support network.

Ultimately, supporting mothers with ADHD involves a holistic approach that acknowledges the unique interplay between ADHD symptoms and the demands of parenting, providing tailored strategies to promote both the mother's well-being and a stable, nurturing environment for her children.

Tips for Clinicians Supporting Moms with ADHD

• Support use of routines
• Make problem solving a focus
• Help client avoid blame
• Support efforts to accept the reality of living with ADHD
• Support home structure to benefit all family members, including children

(Agnew-Blais et al., 2022)

Clinicians supporting mothers with ADHD can employ several effective strategies to enhance their clients' well-being and family functioning. Firstly, consistently supporting the use of routines is paramount. Routines provide predictability and structure, which are incredibly beneficial for individuals with ADHD in managing their daily lives and reducing cognitive load. Helping mothers establish and adhere to consistent schedules for themselves and their children can significantly alleviate stress and disorganization.

Secondly, making problem-solving a central focus of therapy is crucial. Instead of dwelling on past mistakes or perceived failures, guide clients to identify specific challenges and collaboratively develop practical, actionable solutions. This empowers mothers to feel more in control and capable of navigating difficulties.

Thirdly, it is vital to help clients avoid blame, both self-blame and external blame. Many mothers with ADHD internalize their struggles as personal failings, leading to shame and guilt. Clinicians can reframe these challenges as symptoms of a neurodevelopmental condition, fostering self-compassion and reducing the emotional burden. Similarly, addressing any blame from family members and facilitating understanding can create a more supportive home environment.

Fourth, supporting efforts to accept the reality of living with ADHD is a significant therapeutic step. Acceptance does not mean resignation but rather a realistic understanding of the condition's impact and a commitment to developing effective coping mechanisms. This can lead to greater self-awareness and a more adaptive approach to daily life.

Finally, clinicians should actively support the development of a home structure that benefits all family members, including children. This might involve strategies for decluttering, creating designated spaces for belongings, and implementing consistent household rules. By creating an organized and predictable home environment, clinicians can help reduce chaos, improve family dynamics, and enhance the overall quality of life for everyone involved. Resources from organizations like CHADD on coaching, organization, time management, and Cognitive Behavioral Therapy (CBT) can be invaluable tools for both clinicians and clients.

Care Techniques

• Awareness
• Medication (stimulants, nonstimulants, off-label use of anti-depressants)
• Cognitive-behavioral therapy, relaxation training, stress management, couples or family therapy
• Job mentoring, job/behavioral coaching in executive functioning skills
• Sleep hygiene
• Focus on strengths
• Digital detox and limits
• Exercise
• The power of…

• Laughter
• Knowledge
• Influence over ADHD

A comprehensive approach to caring for women with ADHD involves a combination of techniques tailored to individual needs. Awareness is the foundational step; understanding ADHD as a neurodevelopmental condition, rather than a character flaw, is crucial for both the individual and their support system.

Medication often plays a significant role in managing ADHD symptoms. This includes stimulants, nonstimulants, and sometimes off-label use of antidepressants, all of which should be carefully considered and managed by a medical professional.

Therapeutic interventions are equally important. Cognitive-behavioral therapy (CBT) helps individuals identify and change negative thought patterns and behaviors associated with ADHD. Relaxation training and stress management techniques equip clients with tools to cope with the chronic stress and emotional dysregulation that often accompany ADHD. Couples or family therapy can address relational dynamics strained by ADHD, fostering better communication and understanding.

For professional life, job mentoring and job/behavioral coaching in executive functioning skills can provide targeted support for workplace challenges, such as time management, organization, and task completion.

Prioritizing sleep hygiene is essential, as poor sleep can exacerbate ADHD symptoms. Strategies to improve sleep quality, such as consistent sleep schedules and a conducive sleep environment, are vital.

A consistent focus on strengths helps to build self-esteem and confidence, allowing women with ADHD to leverage their unique talents and abilities. Implementing digital detox and limits can reduce distractions and improve focus in an increasingly connected world. Regular exercise is a powerful tool for managing symptoms, improving mood, and reducing anxiety.

Finally, recognizing the power of laughter, knowledge, and influence over ADHD can be transformative. Laughter provides emotional release and perspective. Knowledge empowers individuals to understand their condition and advocate for their needs. And fostering a sense of influence over ADHD, rather than being controlled by it, cultivates agency and resilience. These care techniques, when integrated thoughtfully, can significantly improve the quality of life for women with ADHD.

Strategies and Supports

• Balancing expectations, roles, and responsibilities
• Pomodoro technique
• Task decomposition/breaking down of tasks
• Reminders
• Section 504 - Access, Reasonable accommodations

Effective strategies and supports are essential for women with ADHD to navigate their daily lives successfully. A key area of focus is balancing expectations, roles, and responsibilities. Women often face immense pressure to excel in multiple domains, and ADHD can make this balance particularly challenging. Clinicians can help clients identify realistic expectations, prioritize tasks, and delegate responsibilities where possible, fostering a more sustainable lifestyle.

Practical techniques can significantly aid in managing attention and productivity. The Pomodoro Technique, for instance, involves working in focused intervals (e.g., 25 minutes) followed by short breaks, which can help maintain concentration and prevent burnout. Task decomposition, or breaking down large tasks into smaller, more manageable steps, reduces overwhelm and makes daunting projects feel more achievable. Utilizing various reminders, such as digital alarms, sticky notes, or visual cues, can compensate for forgetfulness and aid in task initiation and completion.

In educational and employment settings, understanding and advocating for Section 504 access and reasonable accommodations is crucial. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination based on disability and ensures that individuals with disabilities have equal access to programs and activities. For women with ADHD, this might translate to accommodations such as extended time on assignments, a quiet workspace, flexible scheduling, or access to assistive technology. By implementing these strategies and leveraging available supports, women with ADHD can enhance their executive functioning, improve productivity, and experience greater success and well-being in all aspects of their lives.

Practical Tips for Women with ADHD

• Practice wellness
• Stay active and connected with others
• Connect with others and find community
• Develop a support system
• Check out community resources and events
• Consider being a part of a faith-based community
• Recognize internal signs and symptoms that may co-occur/be associated with ADHD
• Support co-occurring conditions

For women living with ADHD, integrating practical tips into daily life can significantly enhance well-being and symptom management. A fundamental tip is to practice wellness holistically, encompassing physical, mental, and emotional health. This includes prioritizing adequate sleep, nutritious eating, and stress-reduction techniques.

It is crucial to stay active and connected with others. Regular physical activity can help manage hyperactivity and improve focus, while social engagement combats feelings of isolation. Actively seeking to connect with others and find community is vital. This might involve joining support groups, clubs, or shared interest groups where individuals can relate to similar experiences, fostering a sense of belonging and reducing loneliness.

Developing a robust support system—including friends, family, and professionals—provides a safety net and a source of encouragement. Additionally, exploring community resources and events can open doors to new opportunities for learning, social interaction, and practical assistance. For some, considering involvement in a faith-based community can offer spiritual support, a sense of purpose, and a structured social environment.

Finally, it is important to recognize internal signs and symptoms that may co-occur or be associated with ADHD, such as anxiety, depression, or emotional dysregulation. Being attuned to these internal cues allows for proactive management and seeking appropriate support for co-occurring conditions. By integrating these practical tips, women with ADHD can build resilience, enhance their coping skills, and cultivate a more fulfilling and balanced life.

Keep in mind…

Supports can be put in place to manage and alleviate the symptoms of ADHD. In the family and other contexts, striving for interdependence is key. Use the strengths to balance the needs of the total unit.

It is crucial to remember that while ADHD presents significant challenges, effective supports can be implemented to manage and alleviate its symptoms. The goal is not to eliminate ADHD, but to empower individuals to thrive despite its presence. In family and other relational contexts, striving for interdependence is key. This means fostering an environment where individuals can rely on each other's strengths and support each other in areas of weakness, rather than expecting complete self-sufficiency from every member. By recognizing and utilizing the unique strengths of each individual, the needs of the entire unit can be balanced, leading to greater harmony and collective well-being. This collaborative approach ensures that the burden of ADHD is shared, and that everyone contributes to creating a supportive and functional environment.

Remember

There is always something that can be done to help women living with ADHD improve their quality of life (which also helps the overall family quality of life). Consider helping individuals develop routines, strategies, coping mechanisms, and opportunities to build on strengths, augment social supports, and build self-esteem.

It is a fundamental truth that interventions and support can always be provided to help women living with ADHD enhance their quality of life. This improvement extends beyond the individual, positively impacting the overall family quality of life. Clinical providers should focus on empowering these women by assisting them in developing practical routines, effective strategies, and adaptive coping mechanisms. Creating opportunities to build on their inherent strengths is paramount, fostering a sense of self-efficacy and competence. Furthermore, actively working to augment their social supports—both formal and informal—can combat isolation and provide a vital network of assistance and understanding. Ultimately, the consistent effort to build self-esteem is crucial, helping women with ADHD to recognize their inherent worth and capabilities, leading to a more fulfilling and meaningful life.

Additional Information & Resources

DSM-5 Diagnostic Criteria in ADHD

See link for DSM-5-TR diagnostic criteria (pages 2-7): https://www.pbm.va.gov/PBM/AcademicDetailingService/Documents/508/10-1659_ADHD_QRG_P97097.pdf

https://www.aafp.org/dam/AAFP/documents/patient_care/adhd_toolkit/adhd19-assessment-table1.pdf?ref=clarityxdna.com

Resources

Resources for Adults with ADHD (copy and paste links into a new browser window):

• ADHD Fact Sheets (Note: there is a whole section of resources for adults with ADHD and parents)

• https://chadd.org/understanding-adhd/adhd-fact-sheets/

• Attention Deficit Disorder Association (ADDA)

• https://add.org/resources/

• CHADD

• https://chadd.org/for-adults/overview/

• National Institute of Mental Health

• https://www.nimh.nih.gov/health/publications/adhd-listing

Resources - Books

• ADHD & Marriage, where “The ADHD Effect on Marriage” author Melissa Orlov and psychiatrist and author Dr. Ned Hallowell blog about marriages when at least one spouse has ADHD. Hallowell, his wife (Sue Hallowell), and Orlov wrote “Married to Distraction.”
• “Executive Functioning Skills for Adult ADHD: Proven Techniques and Exercises to Learn Time Management, Increase Focus, and Stop Procrastinating,” by Catherina Kaylie
• “FAST MINDS: How to Thrive If You Have ADHD (Or Think You Might),” by Craig Surman, Karen Weintraub, and Tim Bilkey
• “Faster Than Normal: Turbocharge Your Focus, Productivity, and Success with the Secrets of the ADHD Brain” by Peter Shankman, who was diagnosed with ADHD in his 30s
• “Smart But Stuck: Emotions in Teens and Adults with ADHD,” by Thomas E. Brown, PhD
• “Taking Charge of Adult ADHD,” by Russell A. Barkley, PhD
• The New York Times 6 Books for adults living with ADHD (March 24, 2024): https://www.nytimes.com/2024/03/25/well/mind/adult-adhd-books.html

How to Engage in Consistency in Parenting as a Parent with ADHD

Resource: https://www.youtube.com/watch?v=1XvM9WSHgZI

Workplace Accommodations

Video: https://www.youtube.com/watch?v=-Cfatp1gy-8

Employees in the Workplace

Video: https://www.youtube.com/watch?v=_HXV2doQVlM

Supports and Resources - Websites for women with ADHD:

Website: https://www.qbtech.com/blog/top-6-must-visit-websites-for-women-with-adhd/

Books for Women with ADHD:

Website: https://www.additudemag.com/slideshows/adhd-books-for-women/#:~:text="The Queen of Distraction"&text=Written by a psychologist, this,and respected psychologist Sari Solden.

Information regarding Women and ADHD

Website: https://www.understood.org/en/topics/adhd-women

Kaleidoscope Society

Website: https://www.kaleidoscopesociety.com/

Duke Center for Girls & Women with ADHD

Website: https://adhdgirlsandwomen.org/

Verywell Mind

Website: https://www.verywellmind.com/add-symptoms-in-women-20394

ADDitude

Website: https://www.additudemag.com/category/adhd-add/adhd-in-adults/add-women/?srsltid=AfmBOorsazRsrqhshU8sI3xhryVJpBhtfxgnZY18IGNpQ0-g_t58f0yT

ADDA – Attention Deficit Disorder Association

Website: https://add.org/women-with-adhd/

References

Agnew‐Blais, J. C., Wertz, J., Arseneault, L., Belsky, D. W., Danese, A., Pingault, J. B., ... & Moffitt, T. E. (2022). Mother's and children's ADHD genetic risk, household chaos and children's ADHD symptoms: A gene–environment correlation study. Journal of Child Psychology and Psychiatry, 63(10), 1153–1163.

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787

Attoe, D. E., & Climie, E. A. (2023). Miss. Diagnosis: A systematic review of ADHD in adult women. Journal of Attention Disorders, 27(7), 645–657.

Biederman, J., Faraone, S. V., Spencer, T. J., Mick, E., Monuteaux, M. C., & Aleardi, M. (2021, February 4). Functional impairments in adults with self-reports of diagnosed ADHD: A controlled study of 1001 adults in the community. Psychiatrist.com. https://www.psychiatrist.com/jcp/functional-impairments-adults-self-reports-diagnosed/

Bradley, S., Parzych, I., Platts, J., & Powell, L. (2025). Understanding and harnessing differences in women with ADHD: A qualitative study. Neurodiversity, 3, 27546330251317199.

Cortese, S., Faraone, S. V., Di Martino, A., & Castellanos, F. X. (2016). ADHD in women and girls: An update on the clinical picture and treatment. Current Psychiatry Reports, 18(1), 1-10.

Da Silva, A. G., Malloy-Diniz, L. F., Garcia, M. S., & Rocha, R. (2020). Attention-deficit/hyperactivity disorder and women. In J. Jr. Renno, G. Valadres, A. Cantilino, J. Mendes-Ribeiro, R. Rocha, & A. G. da Silva (Eds.), Women’s mental health (pp. 215–219). Springer Nature Switzerland. https://doi.org/10.1007/978-3-030-29081-8

Holthe, M. E. G., & Langvik, E. (2017). The strives, struggles, and successes of women diagnosed with ADHD as adults. Sage Open, 7(1), 2158244017701799.

Kessler, R. C., Adler, L., Barkley, R., Biederman, J., Conners, C. K., Demler, O., ... & Zaslavsky, A. M. (2006). The prevalence and correlates of adult ADHD in the United States: Results from the National Comorbidity Survey Replication. American Journal of Psychiatry, 163(4), 716–723. https://doi.org/10.1176/ajp.2006.163.4.716

Long, C. J., & Coats, J. L. (2022). Missed diagnosis: A systematic review of ADHD in adult women. Journal of Attention Disorders, 27(7), 645–657.

Martin, J. (2024). Why are females less likely to be diagnosed with ADHD in childhood than males? The Lancet Psychiatry, 11(4), 303–310.

Mayo Foundation for Medical Education and Research. (2024). Adult attention-deficit/hyperactivity disorder (ADHD). Mayo Clinic. Retrieved from https://www.mayoclinic.org/diseases-conditions/adult-adhd/symptoms-causes/syc-20350878

Micai, M., Fatta, L. M., Gila, L., Caruso, A., Salvitti, T., Fulceri, F., Ciaramella, A., D’Amico, R., Del Giovane, C., Bertelli, M. O., Romano, G., Schünemann, H. J., & Scattoni, M. L. (2023). Prevalence of co-occurring conditions in children and adults with autism spectrum disorder: A systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews, 155, 105436. https://doi.org/10.1016/j.neubiorev.2023.105436

Morley, E., & Tyrrell, A. (2023). Exploring female students’ experiences of ADHD and its impact on social, academic, and psychological functioning. Journal of Attention Disorders, 27(10), 1129–1155.

National Association of Social Workers. (2023). Read the code of ethics. https://www.socialworkers.org/About/Ethics/Code-of-Ethics/Code-of-Ethics-English

Pehlivanidis, A., Papanikolaou, Κ., Mantas, V., Kalantzi, E., Korobili, K., Xenaki, L. A., Vassiliou, G., & Papageorgiou, C. (2020). Lifetime co-occurring psychiatric disorders in newly diagnosed adults with attention deficit hyperactivity disorder (ADHD) or/and autism spectrum disorder (ASD). BMC Psychiatry, 20(1). https://doi.org/10.1186/s12888-020-02828-1

Polanczyk, G. V., Willcutt, E. G., Salum, G. A., Kieling, C., & Rohde, L. A. (2014). Psychiatric comorbidities in children and adolescents with ADHD: A meta-analysis of clinical and community samples. European Child & Adolescent Psychiatry, 23(9), 833–848.

Rivas-Vazquez, R. A., Rivas-Vazquez, A. R., & Rivas-Vazquez, A. M. (2023). Masking in ADHD: A systematic review. Journal of Attention Disorders, 27(10), 1083–1094.

Seay, B. (2022, April 14). SuperMom is overrated! ADDitude. https://www.additudemag.com/parenting-moms-with-adhd-advice-help/

Simon, V., Czobor, J., Bálint, S., Mészáros, Á., & Bitter, I. (2009). Prevalence and correlates of adult attention-deficit hyperactivity disorder: A systematic review and meta-analysis. Psychological Medicine, 39(2), 195–208.

Song, P., Zha, M., Yang, Q., Zhang, Y., Li, X., & Rudan, I. (2021). The prevalence of adult attention-deficit hyperactivity disorder: A global systematic review and meta-analysis. Journal of Global Health, 11. https://doi.org/10.7189/jogh.11.04009

Additional Current References

Baggio, S., da Cunha Gonçalves, L., Heller, P., Wolff, H., & Gétaz, L. (2025). Informed Consent in Vulnerable Populations: The Case of Detained Persons with Attention Deficit Hyperactivity Disorder. Journal of Empirical Research on Human Research Ethics, 1. https://doi-org.ezproxy.uu.edu/10.1177/15562646251340474

Giray, L. (2025). Cases of Using ChatGPT as a Mental Health and Psychological Support Tool. Journal of Consumer Health on the Internet, 29(1), 29–48. https://doi-org.ezproxy.uu.edu/10.1080/15398285.2024.2442374

Harkness, K., Bray, S., Durber, C. M., Dewey, D., & Murias, K. (2025). Assessing the Contribution of Measures of Attention and Executive Function to Diagnosis of ADHD or Autism. Journal of Autism & Developmental Disorders, 55(4), 1353–1364. https://doi-org.ezproxy.uu.edu/10.1007/s10803-024-06275-9

Maffly-Kipp, J., & Morey, L. C. (2025). Detecting Attention Deficit Hyperactivity Disorder and its feigning using the Personality Assessment Inventory. Applied Neuropsychology: Adult, 32(3), 730–739. https://doi-org.ezproxy.uu.edu/10.1080/23279095.2023.2207215

Pehlivanidis, A., Kouklari, E.-C., Kalantzi, E., Korobili, K., Tagkouli, E., & Papanikolaou, K. (2025). Self-reported symptoms of attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and affective lability in discriminating adult ADHD, ASD and their co-occurrence. BMC Psychiatry, 25(1), 1–14. https://doi-org.ezproxy.uu.edu/10.1186/s12888-025-06841-0

This text-based course format is a transcript of a live webinar that was created by Continued and edited with AI assistance.

Learning Outcomes

After this course, participants will be able to:

1. Describe the characteristics and variance in the manifestation of autism.
2. Identify common co-occurring mental health conditions among individuals with autism.
3. Explain substance use and abuse realities relevant to individuals with autism.

Introduction

As the prevalence and diagnosis of autism spectrum disorder continues to increase, it is relevant to have an understanding of the multi-faceted nature of this condition. Individuals with autism have a high propensity to develop other co-occurring conditions that impact their lives and their overall quality of life. High rates of mental health conditions and substance use disorders have been found among individuals with autism. This course will provide a foundation of autism, discuss common co-occurring conditions, and explore substance use and abuse realities.

Substance Use Disorder

To set the stage for our discussion, it is important to understand Substance Use Disorder (SUD) from a diagnostic perspective. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR) provides comprehensive criteria for SUD. It recognizes 10 separate classes of drugs and outlines 11 diagnostic criteria. The DSM-5-TR integrates the historical categories of substance abuse and dependence into a single disorder, Substance Use Disorder, with varying severity levels: mild, moderate, and severe.

The four main categories of criteria for SUD include:

1. Physical dependence
2. Risky use
3. Social problems
4. Impaired control

Examples of the 11 diagnostic criteria include: taking the substance in larger amounts or for longer than intended; not managing to do what one should at work, home, or school because of substance use; and needing more of the substance to achieve the desired effect, indicating tolerance. It is crucial to differentiate whether observed behaviors are primarily due to SUD, autism, or a combination of both, as this has significant implications for accurate diagnosis and tailored intervention.

Overview of Autism

Characteristics, Variance in the Manifestation, and Prevalence

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by specific diagnostic criteria outlined in the DSM-5-TR. It is essential to note that these challenges are not better explained by an intellectual disability or global developmental delay.

Autism Spectrum Disorder Characteristics

The diagnostic criteria for ASD, according to the DSM-5-TR, include:

1. Social communication and social interaction deficits. These encompass challenges in expressive, receptive, and social language, making everyday communication and social nuances particularly confusing.
2. Restricted, repetitive behaviors, interests, or activities. This can manifest in various ways, from repetitive movements to intense, narrow interests, and adherence to routines.
3. Symptoms must be present in the early developmental period. Even if a diagnosis is received later in life, the symptoms must have been evident during early development, though they may have been masked or camouflaged.
4. Impairment in social, occupational, or other domains impacting current functioning. The symptoms must cause significant impairment across multiple contexts, such as school, work, relationships, and other functional areas of life.

The concept of "social camouflaging" or "masking" is particularly relevant. Individuals with autism may learn to blend in or hide their autistic traits in social situations, which can be incredibly exhausting and may lead to delayed or missed diagnoses. This ability to mask can make it difficult for others to recognize the underlying challenges, leading to a lack of appropriate support.

Points of Consideration

Understanding the variance in the manifestation of autism is paramount. As the saying goes, "If you've met one person with autism, you've met one person with autism." This highlights the unique ways ASD can present in individuals, making a one-size-fits-all approach to support and intervention ineffective.

Prevalence

The prevalence of autism has seen a significant increase over the past few decades. According to the Centers for Disease Control and Prevention (CDC), as of April 15, 2025, approximately 1 in 31 children in the United States are diagnosed with ASD. This marks a notable rise from previous estimates, such as 1 in 36 children in 2022 and 1 in 44 prior to that. While data on adults with autism is still developing, emerging literature suggests that the prevalence among adults may be even higher.

Broadening of Diagnostic Criteria, Greater Awareness, Screening in Part, Greater Identification

Several factors contribute to this increasing prevalence. The broadening of diagnostic criteria in the DSM, coupled with greater public awareness and increased screening efforts, has led to greater identification of individuals with ASD. Many individuals who historically went undiagnosed or were misdiagnosed with other conditions, such as depression or anxiety, are now receiving accurate autism diagnoses. Early and accurate diagnosis is crucial for accessing specialized treatment and support. Increased survival rates for preterm babies and various environmental factors also play a role in the rising numbers.

Diagnosis Ratio

Historically, findings exhibit a 3:1 male-to-female ratio, with many studies indicating a 4:1 ratio. However, it is important to consider that females with autism may be more adept at social camouflaging, leading to underdiagnosis in this population.

Autism and Co-Occurring Conditions

The presence of co-occurring conditions, or comorbidities, is a significant aspect of the autistic experience. Individuals with ASD often experience a higher likelihood of developing other mental and physical health challenges compared to the general population.

Common Co-Morbidities

Common co-occurring mental health conditions among individuals with autism include:

• Attention-deficit/Hyperactivity disorder (ADHD)
• Executive functioning challenges
• Anxiety disorders
• Depression
• Eating disorders, such as Anorexia and Avoidant/Restrictive Food Intake Disorder (ARFID). ARFID is a newer eating disorder characterized by highly selective eating or a general lack of interest in food, which can lead to poor growth and nutrition.

It is crucial to note that misdiagnosis with other conditions can be common, highlighting the need for thorough assessment and a nuanced understanding of how ASD presents alongside other challenges.

Possible Reasons for Co-morbidities

Several factors contribute to the high rates of comorbidities in individuals with ASD:

• Social isolation: A significant challenge, with recent reports indicating high rates of loneliness in the general population, which is often amplified for individuals with autism.
• Need to control one's own environment: This can manifest in behaviors resembling obsessive-compulsive disorder or various anxieties.
• Craving social inclusion, but challenges with obtaining it: Many individuals with autism desire social connection but struggle with the nuances of forming and maintaining friendships.
• Sensory challenges: Difficulties processing sensory input (e.g., tactile experiences, smells) can lead to distress and contribute to maladaptive coping mechanisms.
• Challenges across all settings: If daily life feels consistently difficult across work, school, and relationships, the likelihood of developing co-occurring conditions increases.
• Disrupted plans and routines: Unexpected changes can lead to significant distress and emotional dysregulation.

Other Considerations

Beyond mental health conditions, individuals with autism may face additional challenges throughout their lives, from childhood to adulthood, across various settings such as school, work, and relationships. These include:

• Bullying: Individuals with ASD are often targets of bullying due to their social differences.
• Safety issues: They are at an increased risk for abuse, exploitation, and neglect, partly due to challenges with social language, naivety, and trusting nature.

Autism and Substances

Substance Use and Abuse Realities

The intersection of autism and substance use is a critical area of study, revealing unique vulnerabilities and patterns of misuse within the autistic population.

Prevalence of Substance Misuse in Autism

The prevalence of Substance Use Disorder (SUD) in people with Autism Spectrum Disorder (ASD) appears to be higher than once considered. While previous data may have underestimated this, current research suggests a greater extent of use and misuse. Studies indicate a ranging prevalence of substance abuse in samples with ASD, from 1.3% to 36% (Ressel et al., 2020). Some research even suggests a double risk for individuals with ASD to develop an SUD compared to those without autism (Kunreuther, 2021). The variability in prevalence rates can be attributed to differences in sample characteristics and diagnostic measures across studies. It is important to note that assessment measures specifically designed to screen for substance abuse in individuals with ASD are often lacking, leading to limitations in establishing a general prevalence.

Common Substances Used

When data is collected regarding specific types of substances used, the following are commonly reported:

• Tobacco
• Alcohol
• Cannabis

A systematic review by Ressel et al. (2020) highlighted that while these substances are commonly used, studies often report varying rates of associated substance abuse. For instance, rates of alcohol use disorder (AUD) range from 1.3% to 16%, and cannabis use disorder rates are reported between 6.5% and 8% among ASD samples.

Considerations

Individuals with ASD might be less likely to self-report substance misuse, making accurate data collection challenging. Drug use is often reported as a means of self-medication. Studies indicate that individuals with ASD are nine times more likely to use recreational substances to manage behavior and are also more likely to use them to manage mental health symptoms (Weir et al., 2021). This suggests that substance use can be a maladaptive coping mechanism for the unique challenges faced by autistic individuals, such as social difficulties, sensory overload, and emotional dysregulation. The visual of a backpack, for instance, can symbolize the hidden struggles and the search for relief that individuals might undertake, sometimes leading to the exploration of substances. The image of a solitary figure contemplating a landscape can evoke feelings of disconnection, while a group of individuals embracing at sunset can represent the crucial need for community and belonging, especially in the context of recovery.

Risk and Protective Factors

Understanding the specific risk and protective factors for individuals with ASD is crucial, as they may differ from those in the general population.

Risk and Protective Factors for General Population May Differ for Those with ASD

Factors that may be more common among those with ASD and contribute to increased risk include:

• Fewer social resources: This can encompass a lack of belonging, diminished social networks, and lower social capital.
• Less/lack of appropriate support and services: Inadequate access to tailored interventions can exacerbate vulnerabilities.
• Greater likelihood to experience physical and mental health conditions: The high comorbidity rates increase the overall burden on individuals.
• Difficulties with emotional regulation: Challenges in managing emotions can lead to maladaptive coping strategies, including substance use.
• Challenges with behavior management: Difficulties in self-regulation can contribute to impulsive behaviors related to substance use.

The image of a building with the question "HOW ARE YOU, REALLY?" painted on its side powerfully conveys the often-unseen struggles and the importance of truly understanding the internal experiences of individuals, particularly those with ASD who may mask their difficulties.

Risk Factors for SUD in ASD Population

Several factors specifically increase the risk of SUD in the ASD population:

• Comorbid externalizing disorders.
• Perceived social deficits.
• Psychological distress.

While some studies have found these factors to be statistically non-significant in isolation, the cumulative effect and the interplay of these elements are important. High autistic traits have been found in some studies to increase the risk for "high drug use" in adolescent populations with autism. However, conclusions regarding the direct association between substance abuse and autistic traits require cautious interpretation due to variations in study methodologies and sample sizes.

Environmental Risk Factors for Substance Use or Abuse

Ressel et al. (2020) identified six key environmental risk factors that increase the likelihood of developing substance abuse among individuals with ASD and ADHD:

1. Late ASD diagnosis: A delayed diagnosis can mean a prolonged period without appropriate support and understanding, increasing vulnerability.
2. Few social resources: Limited social connections and support networks can lead to isolation and a greater propensity for maladaptive coping.
3. Lack of structure: Unstructured environments can be particularly challenging for individuals with ASD who often thrive on routine and predictability.
4. Family history of SUD: This is a common risk factor across populations, but its impact can be amplified for individuals with ASD.
5. Early smoking onset: Initiating smoking at a young age is a known predictor of future substance use.
6. Family history of adversity: Adverse childhood experiences and other traumatic events within the family environment can significantly increase the risk for SUD.

Other Considerations for Possible Elevated Risk of SUD in ASD

Beyond environmental factors, several individual characteristics contribute to an elevated risk of SUD in individuals with ASD:

• Sensory challenges: Individuals with autism may engage in substance use to mitigate the impact of adverse sensory experiences, such as difficulties processing tactile input, under-responsiveness to sensory input, or challenges with processing smells. The image of headphones on a yellow background can symbolize the need for sensory regulation and the potential use of substances to achieve it.
• ADHD: The comorbidity of ADHD with ASD is common, and the associated challenges with executive functioning can increase vulnerability to SUD.
• Mood and/or anxiety disorders: These co-occurring mental health conditions are frequently self-medicated with substances.
• Individual cognitive characteristics:

• Perceived social deficits: Some individuals with autism report that substance use increases their confidence in social environments and eases communication, leading them to use substances to reduce social anxiety.
• High social motivation: Paradoxically, individuals with ASD who have a high desire for social interaction and high social interest (high reward dependence) may be more prone to SUDs if they struggle to achieve meaningful social connections naturally.
• Psychological distress: High levels of psychological distress are a significant precipitating factor for substance use and abuse in individuals with autism. The blurred image of the word "FOCUS" can represent the cognitive challenges and psychological distress that individuals with ASD may experience, leading them to seek relief through substances.
• Weak executive functioning: Deficits in executive functioning (e.g., planning, reasoning, problem-solving, self-management) can contribute to difficulties with self-management and increase the likelihood of using substances as a maladaptive coping mechanism. The prefrontal cortex, responsible for executive functions, is the last part of the brain to develop, and developmental delays in this area can be particularly challenging for individuals with ASD, especially when compounded by other comorbidities.

Other Vulnerability Factors

Additional factors that increase the risk of substance use among people with autism include:

• Childhood use of drugs: Early initiation of drug use is a strong predictor of future SUD.
• Being coerced or tricked into drug use: Individuals with developmental disabilities may be more susceptible to coercion due to traits such as naivety, trusting nature, and difficulties in discerning intentions. Augmenting skills to reduce this vulnerability is crucial.
• Trauma: Adverse childhood experiences and other traumatic events can significantly increase the risk for SUD. The impact of trauma on individuals with autism can be unique and requires specialized understanding and intervention.

Demographics to Consider

Research on the intersection of disability, opioid misuse, and suicidality provides important demographic considerations. A study by Marsack-Topolewski and Chan (2024) on a sample of people with disabilities (not exclusively autism) revealed:

"Results indicated NMPOU [non-medical prescription opioid misuse] was associated with higher odds for serious thoughts of suicide. Having a disability was associated with higher odds for having a plan for suicide and having a suicide attempt. Adolescents with disabilities who engaged in NMPOU had over three times the likelihood for serious thoughts of suicide. Social work services can be tailored for adolescents with disabilities within the context of the family unit to address the impact of the opioid epidemic using a disability-oriented framework." (Marsack-Topolewski & Chan, p. 1, 2024).

Further analysis using the National Survey for Drug Use and Health (NSDUH) by Chan and Marsack-Topolewski (2023) examined the effect of opioid misuse and disability on serious thoughts of suicide, having a suicide plan, and making a suicide attempt. The findings indicated that NMPOU was associated with 37% higher odds for having a suicide plan and 73% higher odds for having a suicide plan over the last year. Opioid misuse is suggested to be a significant risk factor for suicide, and individuals with disabilities are found to be at greater risk. These studies underscore the critical need for targeted interventions and support for adolescents with disabilities, including those with ASD, who are at heightened risk for both substance misuse and suicidality.

Protective Factors

While the risks are significant, it is equally important to identify and leverage protective factors that can decrease the risk of substance use and abuse among individuals with ASD.

• Individual personality: Traits such as low sensation-seeking tendencies can serve as a protective factor.
• Environmental factors: Limited access to drugs significantly reduces the opportunity for substance use.
• Specialized interventions: Tailored support and treatment approaches can build resilience and reduce vulnerabilities.

However, it is also noted that among a clinical sample of adolescents with ASD, there was a higher prevalence of smoking and over four times the risk of illicit drug use, highlighting the complexities in this population.

Clinical Implications: Assessment, Diagnosis, Treatment

Targeted Screening and Diagnosis

A critical clinical implication is the need for targeted screening and diagnosis for both SUD and mental health conditions, particularly in adolescents with ASD. Current screening methods and tools may not be adequately geared to capture these phenomena in the autistic population, leading to undiagnosed cases. Screening should be provided and meticulously aligned with the unique needs and presentation of individuals with ASD. Many individuals with co-occurring ASD and SUD remain undiagnosed, underscoring the urgency for improved assessment practices.

Treatment (SUD and Mental Health Conditions)

• Targeted prevention: Proactive measures are essential to prevent the onset of SUD in individuals with ASD.
• Tailored approach for treatment: A "one-size-fits-all" approach is ineffective. Cognitive Behavioral Therapy (CBT), when tailored to the needs of individuals with ASD, has shown promising results.
• Group CBT: Studies have indicated that group CBT, specifically designed for patients with ASD and co-occurring SUD, yielded positive outcomes (Walhout et al., 2022). This intervention led to lower levels of alcohol use, less passive coping styles, reduced depression, decreased anxiety, and less stress. Notably, a three-month follow-up after the group intervention showed even stronger effects, suggesting the benefit of sustained support. This highlights the potential for specialized and tailored interventions to be highly efficacious for this specific population.

Considerations for Substance-Use Services

Substance use services must be designed to account for the unique needs of individuals with ASD and their co-occurring substance use challenges. Many individuals with ASD who seek substance use services also experience high rates of anxiety (87%), depression (75%), and ADHD, with chronic pain also being commonly reported (Munday et al., 2025). The reasons for substance use vary, often including self-medication for anxiety, depression, sensory challenges, or to enhance social confidence and communication.

Therefore, there is a clear need for personalized, inclusive, and neuro-affirming care. This involves:

• Trauma-informed approaches: Recognizing and addressing the impact of past traumas, which are prevalent in the ASD population.
• Neuro-affirming environments: Providing quiet spaces free of sensory stressors, which can be highly beneficial for individuals with sensory sensitivities.
• Individualized and tailored communication: Adapting communication styles to suit the specific needs of the individual, recognizing that social masking can be exhausting and may hide underlying difficulties.
• Understanding social masking: Professionals must be aware that individuals with ASD may acutely blend in or mask their characteristics in social situations, leading to exhaustion and withdrawal afterward. This masking can contribute to delayed diagnoses and a lack of understanding of their true needs.
• Managing co-occurring conditions: Treatment plans must integrate support for all co-occurring mental and physical health conditions, as they are often intertwined with substance use.

Studies by Marsack-Topolewski and Weiss (2020) and Munday et al. (2025) have highlighted significant access issues and barriers to substance use services for adults with autism, including challenges related to accommodation, acceptability, availability, and affordability. These findings underscore the importance of professional development for practitioners in substance use supportive spaces to ensure that services are trauma-informed, neuro-affirming, tailored, and specific to individuals with ASD who are dealing with SUDs.

Complexities in Supporting Care Recipients, their Families, and Providers

Supporting individuals with ASD who are experiencing substance misuse challenges involves navigating significant complexities, balancing multiple viewpoints and perspectives. This includes:

• Balancing viewpoints and perspectives: Ensuring that all voices are heard, including those of the person with SUD, their family, and care providers.
• Safety is key: Prioritizing the safety and well-being of the individual throughout the treatment and recovery process.
• Dreams for now and the future: Helping individuals and their families envision realistic and achievable goals for their present and future.
• Limited supports: Acknowledging that formal and informal supports can be limited due to factors such as waitlists and costs. Leveraging relevant formal supports and emphasizing the importance of robust informal support networks and community engagement (to reduce social isolation and loneliness) is crucial.
• Changing and evolving needs: Recognizing that the needs of the person with SUD, as well as paid and unpaid care providers, will change over time, requiring flexible and adaptive support strategies.

Multi-pronged Approach

Moving forward, a multi-pronged approach is necessary to address the complex interplay of autism, co-occurring challenges, and substance misuse. Key areas of focus include:

• Awareness: Increasing understanding among the general public, healthcare professionals, educators, and families about the unique vulnerabilities and needs of individuals with ASD regarding substance use.
• Prevention: Developing and implementing targeted prevention strategies that consider the specific risk factors and protective factors for the autistic population.
• Treatment: Enhancing access to and the quality of specialized, neuro-affirming treatment options for SUDs in individuals with ASD. This includes leveraging interventions like group CBT and ensuring services are trauma-informed and individualized.
• Support for the person with SUD: Providing comprehensive support that addresses not only substance use but also underlying mental health conditions, sensory challenges, and social difficulties.
• Support for family and caregivers: Recognizing the vital role of families and caregivers and providing them with resources, education, and emotional support.
• Professional development: Ensuring that professionals across various disciplines receive ongoing training and education to understand the intricate relationships among autism, co-occurring challenges, and substance misuse.
• Understanding the relationship: Continuing research to deepen our understanding of these complex interconnections to inform evidence-based practices.

The image depicting Naloxone (Narcan) nasal spray and Zimhi (naloxone HCl injection) serves as a stark reminder of the opioid crisis and the importance of overdose prevention and response, highlighting a critical aspect of substance misuse realities.

Treatment and Services

Effective treatment and services for individuals with ASD and SUD require a comprehensive and integrated approach. Key components include:

• Hotline support: Providing immediate access to crisis lines and helplines for guidance and support.
• Recovery support: Offering ongoing support systems to aid in long-term recovery, including peer support groups and community-based programs.
• Treatment options: Ensuring a range of evidence-based treatment modalities are available, tailored to the individual's needs and preferences.
• Education, advocacy, community, family support: Empowering individuals and their families through education, advocating for their rights and needs, fostering a sense of community, and strengthening family support systems.

Treatment Directions

The direction of treatment should prioritize personalized, inclusive, and neuro-affirming care, recognizing the unique presentation of ASD and its comorbidities.

Supporting Clients in Building and Maintaining Relationships

Community and social connection are often missing pieces for individuals with ASD, yet they are vital for well-being and recovery. Supporting clients in building and maintaining relationships involves:

• Connecting with local support groups (e.g., through SAMHSA's Find Support services).
• Seeking out local activities, events, and faith communities that align with their interests.
• Connecting with online informational groups for peer support and shared experiences.
• Making time for existing friendships and relationships.
• Reinforcing the message: "Remember – you are not alone!"

The image of multiple hands reaching out to touch a tree trunk powerfully symbolizes the importance of connection, support, and the collective strength found in community.

Remind and Help Clients and Consumers Know that They are Not Alone

Emphasizing that individuals are not alone in their struggles is a powerful message that can foster hope and encourage help-seeking behaviors. Resources such as SAMHSA's support group locator and information on group therapy for substance abuse can be invaluable tools for clients and their families.

Resources

A wealth of organizational resources is available to support individuals, families, and professionals in addressing autism, mental health, and substance misuse.

Organizational Resources – Opioid Prevention and Misuse

• Centers for Disease Control (CDC) Opioid Overdose: Offers an overdose prevention and response toolkit.
• CDC – Overdose Prevention Resources: Provides a variety of communication resources for overdose prevention.
• CDC – Health Care Provider Toolkits: Includes toolkits specifically for healthcare providers, such as the Naloxone Toolkit.
• Rural Community Toolbox: A valuable resource for rural communities, particularly concerning opioid prevention and misuse.
• SAMHSA Opioid Prevention Toolkit: Another comprehensive toolkit for overdose prevention and response.
• State of Michigan Opioid Resources: Provides diverse resources, including access to the "Michigan Safer Opioid Prescribing Toolkit."
• Wyoming Prevention Depot: Offers resources on opioid risk and protective factors.
• National Helplines: Many states offer helplines, in addition to the national helpline: 1-800-662-4357.

Organizational Resources – Support

• Mental Health America: A leading community-based nonprofit dedicated to addressing the needs of those living with mental illness.
• NAADAC: The Association for Addiction Professionals: Provides education, clinical training, and advocacy for addiction professionals.
• National Institute on Alcohol Abuse and Alcoholism (NIAAA): Offers publications and resources on treatment for alcohol problems.
• National Institute on Drug Abuse (NIDA): Provides scientific information on drug abuse and addiction.
• National Institute on Mental Health (NIMH): The lead federal agency for research on mental disorders.

Resources

• SAMHSA Buprenorphine Practitioner Locator: Helps locate practitioners who can provide buprenorphine for opioid use disorder.
• SAMHSA Find Help: A comprehensive tool to find treatment services.
• SAMHSA Opioid Treatment Program Directory: Provides a directory of opioid treatment programs.

Organizational Resources

Note - Links are subject to change.

• Substance Abuse and Mental Health Services Administration (SAMHSA):
• Website: https://www.samhsa.gov/
• SAMHSA’s National Hotline: 1-800-662-HELP (4357)
• Substance Abuse and Mental Health Services Administration (SAMHSA) – Find Treatment:
• Website: https://findtreatment.gov/

Supports

• 988 Lifeline:
  • 988 Suicide & Crisis Lifeline Website: https://988lifeline.org/
• National Helpline:
  • Treatment referral and information, 24/7
  • Website: https://findtreatment.gov/
  • 1-800-662-HELP

Online resources are available for practitioners working with specific populations, such as the Deaf and hard of hearing, to ensure that information and support are accessible and aligned with their unique needs.

Limitations and Risks

Substance use and abuse are complex and the coinciding needs for individuals with autism can be wide ranging. This webinar will not cover every aspect of these topics. Therefore, continued and additional training and education on this topic are recommended. Treatment and approaches to support individuals with autism experiencing substance misuse challenges do not coincide with a one-size-fits-all approach. Practitioners should engage in cultural humility at all times and acknowledge cultural variations regarding substance use and abuse, as well as treatment. Adequate support often require a multi-disciplinary team to ensure comprehensive treatment.

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596

Anderson, S. A. R., & Catallozzi, M. (2021). Autism spectrum disorder and the risk of substance use disorder: A call for targeted screening and prevention in adolescents. JAMA Pediatrics, 175(2), e205376. https://doi.org/10.1001/jamapediatrics.2020.5376

Barber, W., Aslan, B., Meynen, T., Marsden, J., Chamberlain, S. R., Paleri, V., & Sinclair, J. M. A. (2025). Alcohol use among populations with autism spectrum disorder: narrative systematic review. BJPsych Open, 11(1), 1–15. https://doi-org.ezproxy.uu.edu/10.1192/bjo.2024.824

Beck, J. S., Lundwall, R. A., Gabrielsen, T., Cox, J. C., & South, M. (2020). Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits. Autism, 24(4), 809–821. https://doi.org/10.1177/1362361320912147

Brede, J., Babb, C., Jones, C., Elliott, M., Zanker, C., Tchanturia, K., ... & Mandy, W. (2020). “For me, the anorexia is just a symptom, and the cause is the autism”: Investigating restrictive eating disorders in autistic women. Journal of Autism and Developmental Disorders, 50, 4280–4296. https://doi.org/10.1007/s10803-020-04479-3

Centers for Disease Control and Prevention. (2025). Data and statistics on autism spectrum disorder. https://www.cdc.gov/autism/data-research/index.html

Chan, K. T., & Marsack-Topolewski, C. N. (2023). The association of opioid misuse and suicidality among people with disabilities. Substance Use & Misuse, 58(1), 1–10. https://doi.org/10.1080/10826084.2022.2125271

Çi̇çek, A. U., Arslan, S. C., Bozok, B. K., Çolak, S. A. S. M., Abanoz, E., & Ucuz, İ. (2025). The Prevalence of Comorbid Psychiatric Disorders in Children and Adolescents with Asperger Syndrome. Journal of Harran University Medical Faculty / Harran Üniversitesi Tıp Fakültesi Dergisi, 22(1), 132–140. https://doi-org.ezproxy.uu.edu/10.35440/hutfd.1564572

Dickter, C. L., Chang, I., Burk, J. A., & Bravo, A. J. (2025). Autistic traits, emotion regulation, social anxiety, drinking to cope, and problematic alcohol use: A cross-cultural examination among young adults from seven countries. Substance Use & Misuse, 60(5), 766–774. https://doi.org/10.1080/10826084.2024.2447435

Haasbroek, H., & Morojele, N. (2022). A systematic literature review on the relationship between autism spectrum disorder and substance use among adults and adolescents. Review Journal of Autism and Developmental Disorders, 9(1), 1–20. https://doi.org/10.1007/s40489-021-00242-1

Hrycko, A. J., & Sinderbrand, M. (2025). Inpatient hospitalization of adolescents diagnosed with autism spectrum disorder: An ethical analysis. American Journal of Bioethics, 1–7. https://doi-org.ezproxy.uu.edu/10.1080/15265161.2025.2497989

Jadav, N., & Bal, V. H. (2022). Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research. Autism Research, 15(11), 2112–2125. https://doi.org/10.1002/aur.2808

Kunreuther, E. (2021). Autism spectrum disorder and substance use disorder: A dual diagnosis hiding in plain sight. Psychiatric Clinics, 44(1), 35–49. https://doi.org/10.1016/j.psc.2020.11.004

Latif, F., Bajwa, S., Ashraf, R., Malik, S., Dogar, F. A., & Anjum, A. (2025). Unveiling the impact of neurodevelopmental disabilities on intra-family dynamics: A phenomenological exploration. Professional Medical Journal, 32(1), 84–93. https://doi-org.ezproxy.uu.edu/10.29309/TPMJ/2025.32.01.8342

Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013

Marsack-Topolewski, C. N., & Chan, K. T. (2024). The relationship of opioid misuse and suicidality among adolescents with disabilities. Families in Society, Advance online publication. https://doi.org/10.1177/1044389424122916

Munday, K., Papadopoulos, C., Adkin, T., & Gray-Hammond, D. (2025). Improving substance-use services for autistic adults: Insights and recommendations from autistic adults. Autism in Adulthood. Advance online publication. https://doi.org/10.1089/aut.2024.0213

Ressel, M., Thompson, B., Poulin, M. H., Normand, C. L., Fisher, M. H., Couture, G., & Iarocci, G. (2020). Systematic review of risk and protective factors associated with substance use and abuse in individuals with autism spectrum disorders. Autism, 24(4), 899–918. https://doi.org/10.1177/1362361320910963

Walhout, S. J., Zanten, J. V., DeFuentes-Merillas, L., Sonneborn, C. K., & Bosma, M. (2022). Patients with autism spectrum disorder and co-occurring substance use disorder: A clinical intervention study. Substance Abuse: Research and Treatment, 16. https://doi.org/10.1177/11782218221085599

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: A mixed-methods approach. The Lancet Psychiatry, 8(8), 673–685. https://doi.org/10.1016/S2215-0366(21)00160-7

This text-based course is an edited transcript of a live webinar presented by Giselle Levin, PsyD.

This material is for educational purposes and does not replace clinical judgment or local policy.

Course Overview

In this course, we will undertake a thorough and critical examination of the current classification of paraphilias and paraphilic disorders within the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5). We will move beyond a simple recitation of diagnostic criteria to explore the historical evolution of these classifications, the ethical and legal implications of diagnosis, and the complexities of distinguishing between non-pathological sexual diversity and genuine psychological distress. Our analysis will be guided by central questions we must consider as clinicians, including the fundamental difference between a paraphilia and a paraphilic disorder and the role of classifications in the context of consent and criminal behavior. This discussion underscores the need for a nuanced, ethically-informed, and culturally competent approach to understanding paraphilic interests and behaviors.

Limitations/Risks

This presentation focuses on the fundamentals of DSM-5 Paraphilic Disorders. We discuss distinguishing paraphilias and paraphilic disorders, DSM-5 criteria, and an overview of treatment. This presentation does not provide in-depth training related to diagnosing and treating paraphilic disorders. Seek consultation or refer as needed.

This presentation provides a general overview of DSM-5 Paraphilic Disorders, but does not explore the cultural variations in how these disorders may be perceived, expressed, or diagnosed across different communities. Clinicians should apply culturally competent approaches and consider how societal norms, stigma, and access to care may influence assessment and treatment. Seeking culturally informed consultation or resources is recommended when working with diverse populations.
​​

Learning Outcomes

After this course, participants will be able to:

• Differentiate between non-disordered sexuality and DSM-5 paraphilias in two case studies.
• Describe ethical concerns related to the pathologizing of normal human sexual diversity within the DSM-5.
• Identify situations in which clients could benefit from diagnosis and treatment for DSM-5 paraphilias.

FAQs

• Are there guidelines for documentation that you recommend around paraphilic disorders?
• How do you treat patients who are invested in the idea that they have a paraphilia when there are no issues of nonconsensual behavior?
• Given that the DSM-5's paraphilic disorders have so many problems, what are your thoughts about what ideally DSM-6 should do with the chapter?
• How do we recommend we combat stigma among our coworkers about paraphilic disorders?
• Sexual offending is such a huge problem. Do you have different views on paraphilic disorders that involve sexual offenses compared with those that don't?

Guiding Questions:

• What is the difference between a paraphilia and a paraphilic disorder?
• How do we distinguish "normal" variations in human sexuality from a paraphilic disorder?
• Should psychological disorders be used as a mechanism for understanding criminal behavior and/or non-consensual sexual behavior?

Notice!

• What surprises you?
• What seems to be clinically relevant or irrelevant to your work?
• Which criteria feel helpful or unhelpful with regard to distinguishing "normal" sexual diversity and pathology?

History & DSM-5 Changes

The history of nosology—the way in which we classify diseases and disorders—is a journey that reveals as much about societal values and political landscapes as it does about scientific understanding. The evolution of the paraphilic disorders chapter within the DSM is a prime example of this.

When the first edition of the DSM was released in 1952, it included a category for "sexual deviation" under the broader heading of sociopathic personality disorder. This category was incredibly broad and encompassed a wide spectrum of behaviors that were not explicitly linked to procreation. This included homosexuality and what was then termed "transvestism," as well as other interests like pedophilia, fetishism, and sexual sadism.

The inclusion of these behaviors under a psychiatric label marked a significant shift from the previous view that these acts were sinful or evil. The perspective moved from one of morality to one of medicine, from seeing individuals as "bad" to seeing them as "mad". While some might argue that this medicalization was a step toward a more empathetic view, it also had severe negative consequences. The classification provided a seemingly scientific justification for the institutionalization of queer individuals, castration, and widespread discrimination. It gave society a scientific sanction to fire people from their jobs, to expel them from their families, and to deny them citizenship on the basis of their sexual orientation or gender expression. This period, therefore, highlights a crucial question that still resonates today: to what extent is the DSM a truly scientific document, and to what extent is it a reflection of social and political pressures? The scientific rigor behind the paraphilic disorders chapter has, in fact, been heavily questioned, and this lack of a strong evidence base has led to continued debate.

The landscape changed dramatically in 1973 with the removal of homosexuality from the DSM, an action driven largely by the tireless work of queer rights activists. This change was not without controversy and was met with strong resistance from many clinicians. The introduction of "paraphilias" in the DSM-III in 1980 was, in many ways, a compromise between these opposing factions. It also introduced a new, now-removed category of "ego dystonic homosexuality," which pathologized individuals who were distressed by their same-sex attractions, allowing a continued space for classification of same-sex attraction as a disorder under a new guise. This was a clear example of the DSM adapting to social pressures while still maintaining a degree of what some would consider a pathologizing stance.

The DSM-IV introduced a key element that is still central today: the "distress criterion". This meant that an individual could be diagnosed with a paraphilic disorder based on the presence of distressing urges or fantasies, even without having acted on them or having any functional impairment. This was a significant development because it shifted the focus from behavior alone to the individual's internal experience.

The DSM-5, released in 2013, further refined this by making a crucial distinction between a paraphilia and a paraphilic disorder. The emphasis was placed on either personal distress, functional impairment, or the causing of harm or risk of harm to others. This distinction was a major step toward acknowledging that not all unusual sexual interests are pathological.

Paraphilias vs. Paraphilic Disorders

The distinction between a paraphilia and a paraphilic disorder is a cornerstone of the DSM-5's approach to this topic.

A paraphilia is defined by the DSM-5 as an "intense and persistent sexual interest other than genital stimulation or preparatory fondling with normal, physically mature, and consenting human partners" (American Psychiatric Association, 2022). This definition is complex and contains several key components that require careful unpacking. First, the sexual interest must be for a specific act or target, one that is outside of what the manual considers "normal" or "preparatory" sexual activity. The term "normal" itself is highly problematic and subjective. Second, the interest must be "intense and persistent," a qualitative measure that lacks a clear, research-supported definition, making it difficult to apply consistently. Finally, the "erotic target" must be other than what is considered a "normal, physically mature, and consenting human partner". This raises questions about what constitutes a "normal" partner and whether certain sexual interests, such as those for a particular body type, could technically be considered a paraphilia. The DSM-5 acknowledges that there are a vast number of potential paraphilias, many of which do not have a specific diagnosis in the manual.

The shift from the term "paraphilia" to "paraphilic disorder" in the DSM-5 was meant to clarify that not all paraphilic interests are pathological. For a paraphilia to become a paraphilic disorder, it must meet specific criteria. The individual's paraphilic interest, urges, or behaviors must either cause "distress or functional impairment to the individual" (Criterion B) OR have "caused harm or risk of harm to others" (Criterion B). This distinction is absolutely critical because it means that a person could have a paraphilia (meeting Criterion A) but not have a diagnosable disorder (by not meeting Criterion B). For example, a person with an intense and persistent fetishistic interest in feet would only be diagnosed with Fetishistic Disorder if that interest was causing them significant distress in their life or interfering with their daily functioning.

The distress and impairment criterion, however, is a point of significant contention. It is often challenging to determine whether an individual's distress stems from their sexual interest itself or from the societal stigma and internalized shame associated with that interest. We will explore this ethical dilemma further in later sections, but it is a fundamental problem with the current diagnostic framework.

Voyeuristic Disorder (F65.3)

Voyeuristic Disorder is defined as having "recurrent and intense sexual arousal from observing an unsuspecting person who is naked, disrobing, or engaging in sexual activity" (American Psychiatric Association, 2022). The fantasies, urges, or behaviors must have been present for at least six months.

The diagnostic criteria (Criterion B) further specify that for a diagnosis to be made, the individual must have either acted on these urges with a non-consenting person, OR their urges or fantasies must cause them significant distress or functional impairment (American Psychiatric Association, 2022). This is a vital point to remember as it distinguishes a momentary impulse from a diagnosable disorder.

The criteria also include an age requirement (Criterion C), stating that the individual must be at least 18 years old (American Psychiatric Association, 2022). This is an attempt to avoid pathologizing what the DSM-5 considers to be "normative sexual exploration" in adolescence.

The manual provides specifiers for individuals "in a controlled environment" (e.g., a prison or psychiatric hospital) and for those "in full remission". To be in full remission, an individual must have not acted on the urges and must have experienced no distress or impairment for at least five years while in an uncontrolled environment (American Psychiatric Association, 2022). The long duration of the remission period is notably longer than for many other mental health conditions.

It is important to note that consensual voyeuristic behavior, such as a partner watching another undress with their knowledge and agreement, would not meet the diagnostic criteria unless the individual experienced significant distress or functional impairment that was not related to societal stigma.

Exhibitionistic Disorder (F65.2)

Exhibitionistic Disorder shares a similar structure to Voyeuristic Disorder. It is characterized by "recurrent and intense sexual arousal from the exposure of one's genitals to an unsuspecting person" (Criterion A) (American Psychiatric Association, 2022). The fantasies, urges, or behaviors must persist for a period of at least six months.

As with other disorders, the individual must have (Criterion B) either acted on these urges with a non-consenting person, OR their fantasies and urges must cause them marked distress or functional impairment (American Psychiatric Association, 2022). Acts of exhibitionism are common, but the key to a diagnosis lies in the intensity and recurrence of the interest, which is much less common.

The specifiers for this disorder include whether the exposure is directed toward prepubertal children, physically mature individuals, or both. Additional specifiers exist for "in a controlled environment" and "in full remission" (American Psychiatric Association, 2022). Again, the element of a "non-consenting person" is central to the behavior, but the distress and impairment criteria can be met even in the absence of a non-consenting act, which is a point of confusion for some clinicians.

Frotteuristic Disorder (F65.81)

Frotteuristic Disorder is defined by (Criterion A) a "recurrent and intense sexual arousal from touching or rubbing against a non-consenting person" (American Psychiatric Association, 2022). This must be present for a period of six months. The diagnostic criteria (Criterion B) require that the individual has acted on these urges OR that the fantasies and urges cause them significant distress or functional impairment (American Psychiatric Association, 2022).

This is an important distinction to make because frotteuristic acts—unwanted touching or rubbing against another person—are surprisingly common, occurring in up to 30 percent of adult men in the United States and Canada. However, a diagnosis of Frotteuristic Disorder is only made when there is a recurrent and intense sexual interest driving the behavior, which is a far less common occurrence. Statistics show that only 10 to 14 percent of men in outpatient settings with paraphilic disorders and hypersexuality meet the criteria for this disorder. Therefore, a single act of frotteurism would not warrant a diagnosis, as it does not meet the "recurrent and intense" criteria. The disorder, like others, also has specifiers for "in a controlled environment" and "in full remission" (American Psychiatric Association, 2022).

Sexual Masochism Disorder (F65.51)

Sexual Masochism Disorder stands apart from the previous disorders because it does not inherently involve a non-consenting partner. This disorder is defined as having (Criterion A) "recurrent and intense sexual arousal from being humiliated, beaten, bound, or otherwise made to suffer" (American Psychiatric Association, 2022). The fantasies, urges, or behaviors must have been present for at least six months.

The diagnostic criteria (Criterion B) state that these behaviors, urges, or fantasies must be causing the individual significant distress or functional impairment (American Psychiatric Association, 2022). A diagnosis would not be made for a person who engages in consensual sexual masochism without experiencing distress. This distinction is critical because it separates consensual BDSM activities from a diagnosable disorder. Many people engage in consensual activities that fall under this umbrella, such as rope play or degradation, without any negative psychological consequences.

The disorder includes a specifier for "with asphyxiophilia," which is defined as deriving sexual arousal from choking (American Psychiatric Association, 2022). This is noted for its inherent dangers and the higher risk of death associated with such behavior. As with other disorders, there are specifiers for "in a controlled environment" and "in full remission".

The case study of Michael, an 80-year-old gay man who was distressed by his consensual masochistic interests due to his Mormon upbringing, perfectly illustrates the complexity of the "distress" criterion. While he technically meets the criteria for the disorder because he has distress, the root of his distress is not the behavior itself but the internalized shame from societal stigma.

Sexual Sadism Disorder (F65.51)

Sexual Sadism Disorder is the counterpart to masochism, defined as having (Criterion A) "recurrent and intense sexual arousal from the physical or psychological suffering of another person" (American Psychiatric Association, 2022). This must also be present for a period of six months.

The diagnostic criteria (Criterion B) require that the individual has either acted on these urges with a non-consenting person OR that their urges and fantasies cause them significant distress or functional impairment (American Psychiatric Association, 2022). A key point from the DSM-5 is that individuals who sadistically assault others but deny any sexual arousal or distress can still be diagnosed with this disorder. This is because the act itself, which has caused harm to another, is sufficient for the diagnosis. This is an important distinction, as it shows that harm to others can trump the individual's self-reported experience of distress or arousal.

It's also worth noting a striking statistic: less than 10 percent of sexual offenders in the United States meet the criteria for Sexual Sadism Disorder, which suggests that the vast majority of sexual offenders are not motivated by this specific type of paraphilic interest. This disorder, like the others, has specifiers for "in a controlled environment" and "in full remission" (American Psychiatric Association, 2022).

Pedophilic Disorder (F65.4)

Pedophilic Disorder is defined as having (Criterion A) "recurrent and intense sexual arousal from sexual activity with a prepubescent child (under the age of 13)" (American Psychiatric Association, 2022). The fantasies, urges, or behaviors must have been present for at least six months. The diagnostic criteria (Criterion B) require that the individual has either acted on these urges OR that their urges and fantasies cause them significant distress or functional impairment (American Psychiatric Association, 2022).

A critical diagnostic criterion to emphasize is (Criterion C): the individual must be at least 16 years old AND at least five years older than the child (American Psychiatric Association, 2022). Therefore, a 13-year-old and a 17-year-old would not meet the criteria, as the five-year age gap is not met.

The DSM-5 also notes that individuals who repeatedly approach children can be diagnosed even if they deny sexual intent or distress, as their behavior itself is sufficient for the diagnosis (American Psychiatric Association, 2022).

Specifiers for this disorder include whether the attraction is "exclusive" or "non-exclusive" to prepubescent children, the gender of the children of interest ("attracted to males/females/both"), and whether the interest is "limited to incest" (American Psychiatric Association, 2022). It is also important to note that while pedophilia (the paraphilia) is often considered a lifelong condition, pedophilic disorder is not. An individual could stop meeting the criteria for the disorder if their urges no longer cause distress or functional impairment, though they would still be considered to have the paraphilia of pedophilia.

Let's consider a quiz question: According to the DSM-5, which of the following individuals would meet criteria for pedophilic disorder? a) A 23-year-old man who has sexually arousing fantasies about young children but has never acted upon any urges and denies distress or interpersonal difficulty. b) An 18-year-old boy who is in a sexual relationship with a 13-year-old girl. c) A 16-year-old boy who has highly distressing sexual fantasies about a 9-year-old cousin. d) A 45-year-old woman who is sexually involved with a 16-year-old girl.

The correct answer is (c). The 16-year-old meets the age requirement (Criterion C) of being at least 16 and at least five years older than the nine-year-old. He is experiencing highly distressing fantasies, which meet the criteria for the disorder (Criterion B). The other options fail to meet the criteria: (a) lacks distress or action (Criterion B); (b) has an insufficient age gap (Criterion C); and (d) involves a child outside of the prepubescent definition (Criterion A).

Fetishistic Disorder (F65.0)

Fetishistic Disorder is defined as having (Criterion A) "recurrent and intense sexual arousal from either non-living objects or a highly specific focus on non-genital body parts" (American Psychiatric Association, 2022). This must be present for at least six months. The diagnostic criteria (Criterion B) require that these behaviors, urges, or fantasies cause the individual significant distress or functional impairment (American Psychiatric Association, 2022).

It is important to note (Criterion C) that this diagnosis is not given if the interest is limited to cross-dressing or to sex toys that are designed to stimulate the genitals (American Psychiatric Association, 2022). An example would be an intense sexual interest in shoes, feet, or armpits, where these objects or body parts become the primary focus of sexual arousal.

While many people might enjoy incorporating a fetishized object or body part into their sexual activity, a person with this disorder would often have a preference for the fetishized object over traditional sexual acts. They would feel more sexually satisfied with the fetishized object present. Only a small number of people with this disorder would feel that they absolutely need the fetishized object to be present to experience sexual arousal. The disorder has specifiers for the type of fetish (body parts, nonliving objects, other), "in a controlled environment," and "in full remission" (American Psychiatric Association, 2022).

Transvestic Disorder (F65.1)

Transvestic Disorder is defined as having (Criterion A) "recurrent and intense sexual arousal from cross-dressing" (American Psychiatric Association, 2022). The fantasies, urges, or behaviors must have been present for at least six months. The diagnostic criteria (Criterion B) require that these behaviors, urges, or fantasies cause the individual significant distress or functional impairment (American Psychiatric Association, 2022).

A key point to emphasize is that this diagnosis is not for people who cross-dress for reasons of gender affirmation, as in the case of a trans person. It is specifically tied to sexual excitement. The disorder is noted to be more prevalent in men than women and can be specified as "with fetishism," meaning the individual is aroused by specific garments or fabrics, or "with autogynephilia," which is defined by the DSM-5 as being aroused by the thought or image of oneself as a woman (American Psychiatric Association, 2022).

I want to highlight a troubling statement from the DSM-5 that suggests this behavior can "interfere with or detract from heterosexual relationships," implying a bias toward "conventional marriages" and a potential pathologization of behavior that is simply a departure from a narrow definition of normalcy (American Psychiatric Association, 2022). This phrasing in the manual itself underscores the ethical and political dimensions of these classifications.

Differential Diagnosis

When a person presents with symptoms or behaviors that may be related to a paraphilic disorder, it is crucial for a clinician to consider a differential diagnosis. Certain conditions can mimic or present with similar behaviors, but the underlying cause is different.

For example, if a sexual interest or behavior only occurs during a manic episode, a period of acute psychosis, while under the influence of substances, or in the context of a neurocognitive disorder, a paraphilic disorder diagnosis is not appropriate. The behavior is considered a symptom of the primary condition, not a stand-alone disorder. The case study of Robert, a 25-year-old man whose new and erratic behaviors, including assault, coincided with symptoms of a potential manic episode or substance use, illustrates this.

Similarly, a person with Conduct Disorder or Antisocial Personality Disorder might engage in norm-breaking behaviors, including assaultive behavior, but if there is no specific, recurrent, and intense sexual interest driving the behavior, a paraphilic disorder diagnosis is not warranted. I want to specifically mention that general sexual assault is not included as a paraphilic disorder.

Obsessive-Compulsive Disorder (OCD) is another important differential to consider. The case study of Mary, a 19-year-old with intense and distressing thoughts about touching a young child, perfectly illustrates this. Her thoughts are "ego-dystonic," meaning they are inconsistent with her self-concept and she finds them highly distressing. There are no positive feelings or sexual arousal associated with the thoughts, and she has no desire to act on them. The anxiety and rumination about being a pedophile are classic signs of OCD, not a paraphilic disorder. The DSM-5's distress criterion can be particularly challenging in such cases, as the distress may be a result of the intrusive thoughts rather than a paraphilic interest.

Finally, let's touch on the difference between Transvestic Disorder and Gender Dysphoria. While the DSM-5 suggests that a person with Transvestic Disorder does not have gender incongruence, it also confusingly states that a person can have both (American Psychiatric Association, 2022). This ambiguity highlights the need for clinicians to rely on a thorough assessment of the individual's full experience, rather than a superficial checklist of symptoms.

BDSM vs. Paraphilic Disorders?

The relationship between BDSM and the paraphilic disorders chapter in the DSM-5 is a contentious and often misunderstood topic. Drawing on my personal and professional experience, I want to emphasize that the fundamental distinction between consensual BDSM and a paraphilic disorder is the presence or absence of consent.

In BDSM, consent is not just assumed but is an active, ongoing, and fundamental part of the practice (Dunkley & Brotto, 2020). It involves detailed pre-scene negotiation, clear communication of desires and boundaries, and the use of safety mechanisms like safe words. Without consent, BDSM activities would be considered abuse or assault, not a consensual sexual practice.

Which Paraphilic Disorders Could Overlap with BDSM Behaviors?

Certain paraphilic disorders, specifically Sexual Sadism Disorder and Sexual Masochism Disorder, could potentially overlap with behaviors found in BDSM. However, the disorders that involve a non-consenting person, such as Voyeuristic Disorder, Exhibitionistic Disorder, and Frotteuristic Disorder, cannot be considered consensual BDSM. The very nature of the act is predicated on the lack of consent.

Can Overlap:

• Sexual Sadism Disorder
• Sexual Masochism Disorder

Cannot Overlap:

• Pedophilic Disorder
• Frotteuristic Disorder
• Voyeuristic Disorder
• Exhibitionistic Disorder

The case study of Michael, the 80-year-old gay man who was distressed by his consensual masochistic interests due to his religious upbringing, demonstrates the problematic nature of the distress criterion. While he technically meets the criteria for Sexual Masochism Disorder (due to distress), his distress is not about the behavior itself but the societal stigma and internalized shame associated with it. This is a powerful argument for the ethical concerns surrounding the DSM-5's classification.

ICD-11 Diagnoses

In contrast to the DSM-5's approach, the ICD-11, published in 2019, has taken a different path (World Health Organization, 2019). It has removed several diagnoses related to consensual behavior, including Fetishism, Fetishistic Transvestism, and Sadomasochism. Any consensual BDSM was removed.

The ICD-11 has shifted its focus to disorders that involve non-consensual behavior. For example, Sexual Sadism was changed to "Coercive Sexual Sadism Disorder" to focus specifically on non-consensual acts of sadism. What remains are disorders such as Exhibitionistic Disorder, Voyeuristic Disorder, Pedophilic Disorder, Coercive Sexual Sadism Disorder, and Frotteuristic Disorder. This move reflects a global effort to destigmatize consensual sexual interests and to concentrate diagnostic efforts on behaviors that cause genuine harm. This contrast between the DSM and ICD highlights the ongoing debate about the proper role of these diagnostic manuals in a diverse and evolving world.

Prevalence

Understanding the prevalence of various sexual interests and behaviors is essential for a clinician attempting to distinguish between a common variation in human sexuality and a statistically abnormal one.

A 2017 study found a surprisingly high prevalence of BDSM fantasies or practices, with almost 70 percent of people reporting at least one such fantasy or practice (Herbenick et al., 2017). However, a much smaller percentage, around 7 percent, actually identified as BDSM practitioners (Brown et al., 2020). This shows that a wide range of sexual interests exists, but most people do not organize their sexual identity around them.

Image Caption: Prevalence of BDSM fantasies versus BDSM practitioner identity in the general population. While nearly 70% of people report BDSM fantasies (Herbenick et al., 2017), only about 7% identify as practitioners (Brown et al., 2020). Data notes: Left Chart (BDSM Fantasies): Yes (red, ~69%), No (grey, ~31%) . Right Chart (BDSM Practitioners): Yes (red, ~7%), No (grey, ~93%).

Image Caption: Prevalence of various sexual interests in the general population (Herbenick et al., 2017). Rates include Public sex (43%), Spanking (30%), Role play (22%), Bondage (20%), Whipping (13%), and BDSM parties (8%). Data notes: Diagram shows six boxes with percentages: Public sex: 43%; Spanking: 30%; Role play: 22%; Bondage: 20%; Whipping: 13%; BDSM parties: 8%.

Another study found that 45 percent of people had a desire to engage in a paraphilia, and nearly 34 percent had actually engaged in a paraphilic behavior (Joyal & Carpentier, 2017). It's important to emphasize that many of the interests considered paraphilic by the DSM-5—such as voyeurism, fetishism, frotteurism, and masochism—are not, in fact, "statistically unusual" because they occur in more than 16 percent of the population (Joyal & Carpentier, 2017). The key difference between a common interest and a paraphilic disorder lies in the "recurrent or intense" nature of the interest, which is much less common, endorsed by less than 10 percent of people. This distinction is vital for clinicians to consider, as they must not mistake a common, if unconventional, sexual interest for a diagnosable disorder.

Criticisms of Paraphilic Disorders

The DSM-5's chapter on paraphilic disorders has been the subject of significant criticism from a number of experts in the field. I want to highlight an article by Moser (2019), who argued that the chapter would likely not pass a peer review process for publication in an academic journal. This scathing critique points to a number of fundamental problems with the chapter.

First, Moser (2019) noted a lack of transparency surrounding the development of the chapter, with committee members reportedly signing a confidentiality pledge and a lack of evidence that expert feedback was genuinely incorporated. The DSM-5 is a "consensus document," not a comprehensive literature review, and critics argue that this approach led to a chapter that is not rooted in quality research. No field trials were conducted to support the validity and reliability of the new diagnoses and criteria (Moser, 2019).

Other criticisms include the ambiguity of key terms. For instance, the manual lacks a clear definition for what constitutes an "intense" sexual interest, making it difficult to distinguish between a paraphilic and a "normophilic" interest (Moser, 2019). The term "preference," used by the APA, is also seen as problematic, as it can evoke the same kind of stigma that was historically used to pathologize homosexuality (Moser, 2019). This raises the question of whether a strong preference for a particular body type, such as redheads or curvy people, could technically be considered a paraphilia, a line of reasoning that, while absurd, highlights the flaws in the manual's language. For non-consensual disorders, Moser (2019) notes that "the crime is the disorder," questioning why this logic isn't applied to other crimes like embezzlement or even general sexual assault.

A major ethical and clinical criticism is the "distress criterion". I repeatedly voice a strong dislike for this criterion, noting that it is nearly impossible to distinguish between personal distress and distress that is a result of societal stigma and internalized shame. The APA's guidance that the distress should be personal, not from societal stigma, is seen as impractical and naive, as every individual is impacted by the society and culture in which they live. As Moser (2019) argues, it's unclear how a clinician could know where the distress truly originated, and most clinicians may not even be aware of this fine distinction from an APA fact sheet. This can lead to the pathologizing of people who are simply struggling with the shame and guilt of having a non-normative sexual interest, rather than a genuine psychological disorder. I argue that a psychiatric diagnosis should not be a reflection of what is "culturally or morally abhorrent" but should instead be based on a clear and evidence-based understanding of psychopathology.

How Do YOU Define Psychopathology?

Our discussion of the criticisms of the DSM-5's paraphilic disorders chapter culminates in a thought-provoking question about the very definition of psychopathology. This question forces clinicians to reflect on the foundations of their practice and the ethical implications of diagnosis.

Image Caption: Defining psychopathology is complex. It is often considered an intersection of what is statistically abnormal, culturally or morally abhorrent, and what causes clinical distress or functional impairment. Data notes: Central term: Psychopathology. Four surrounding terms: Statistically Abnormal, Culturally/Morally Abhorrent, Clinical Distress, Functional Impairment.

A diagnosis should not be made simply because a behavior is statistically abnormal, as many paraphilic interests are not. It should not be made simply because a behavior is culturally or morally abhorrent, as this opens the door to pathologizing any behavior that falls outside of a narrow societal norm. Diagnosis should also not be based solely on functional impairment or clinical distress without careful consideration of the source of that distress. As discussed in the case study of Michael, the source of distress was not his consensual BDSM activities but the internalized shame from his religious upbringing. A proper definition of psychopathology must be robust enough to withstand these challenges and must be rooted in a clear understanding of the individual's psychological experience, not just their behavior or the judgments of society.

Ethical Considerations

The diagnosis of a paraphilic disorder is not a neutral clinical act; it carries with it significant and potentially devastating ethical and legal consequences. It is important to highlight the fact that these diagnoses can be used in court to invoke sexually violent predator (SVP) statutes. This can lead to the involuntary commitment of individuals for life, sometimes preventatively, based on the presence of a diagnosis. This means that a person could be institutionalized without having committed a sexual crime, simply because they have a specific paraphilic disorder. This underscores the power and responsibility inherent in a diagnostic manual like the DSM-5.

Moser (2019) is quoted as saying that the APA should be held accountable for the harm its classifications cause, arguing that the DSM is a "policy and social document" as much as it is a scientific one, and that the APA should be clear when the science does not support its position.

The stigma associated with these diagnoses is immense and can lead to serious psychological harm. The DSM-5 itself acknowledges that suicidality is associated with the stigma-related shame and guilt experienced by some BDSM practitioners (American Psychiatric Association, 2022). This is a tragic consequence of a diagnostic system that has, in some cases, failed to adequately distinguish between unconventional sexual interests and genuine psychological pathology. The ethical obligation of clinicians is, therefore, to be extremely cautious and thoughtful in their application of these diagnoses, always considering the potential for harm to the individual.

Treatment: An Overview

Treatment for paraphilic disorders is a complex and multifaceted undertaking that typically involves a combination of pharmacological and behavioral therapies. The goal of treatment is not to change a person's sexual interest but to address the behaviors that are causing harm or distress.

Image Caption: An overview of common treatment modalities for paraphilic disorders includes pharmacological, behavioral, and cognitive-behavioral therapies.

Pharmacological treatments are often used to reduce sexual arousal and libido and are most commonly used with individuals who have a history of sexual offending. Behavioral therapies, such as Cognitive Behavioral Therapy (CBT), Dialectical Behavior Therapy (DBT), and Schema-Focused Therapy (SFT), are also used to treat paraphilic disorders. These therapies are designed to address the cognitive distortions that maintain the behaviors, to help the individual recognize and correct maladaptive behaviors, and to address affective components such as a lack of empathy, which are often present in individuals with psychopathy or Antisocial Personality Disorder. The ultimate goal of these therapies, particularly in forensic settings, is to reduce recidivism. It is important to note that these treatments are most often used with sexual offenders.

Pharmacological Treatments

The use of pharmacological interventions for paraphilic disorders is a testament to the serious nature of the behaviors they are meant to address. The most common medications used are Selective Serotonin Reuptake Inhibitors (SSRIs), which can help to improve impulse control and reduce "deviant thoughts" in some individuals.

More aggressive treatments include anti-androgens and GnRH agonists, which work to reduce sexual arousal and libido by blocking testosterone. I use the stark phrase "akin to castration levels" to describe the effect of these medications. This highlights the severity of the treatment and the potentially life-altering side effects. The impact on bone health can be severe, with some individuals developing osteoporosis. Other side effects can include diabetes and high blood pressure. These medications are not a cure for the paraphilia itself but are intended to manage the intense urges and reduce the risk of re-offending. They are a tool used in a broader treatment plan that includes therapy and other behavioral interventions.

CBT & Other Therapies

Behavioral therapies are a cornerstone of treatment for paraphilic disorders, particularly for sexual offenders. Cognitive Behavioral Therapy (CBT) is a key modality used to identify and address the cognitive distortions that may maintain a person's paraphilic behaviors. The focus is on helping the individual recognize and correct maladaptive thoughts and behaviors.

I also want to mention the use of Dialectical Behavior Therapy (DBT) and Schema-Focused Therapy (SFT), which can be used to address broader psychological issues that may be present, such as psychopathy, Antisocial Personality Disorder, or a lack of empathy.

A comprehensive treatment plan might include psychoeducation about behavioral change, a functional behavioral analysis to understand what is perpetuating the behaviors, impulse control training, and the development of risk cards to help the individual identify situations that might lead to re-offending. Communication skills training and relapse prevention are also crucial components. Ultimately, the goal of these therapies is to reduce recidivism and to help individuals live a life that is in line with their values, even if they continue to have paraphilic interests. The discussion of an Internet-administered CBT protocol provides a detailed example of what such a treatment might look like, with a clear focus on education, skill-building, and relapse prevention.

Clinical Utility

A central question that must be asked of any psychiatric diagnosis is whether it has "clinical utility," a standard that the APA itself endorses. Citing Moser (2019), I would argue that the clinical utility for paraphilic disorders is questionable. While there may be a general link between paraphilias and other psychological disorders (Renaud, 2019), this does not automatically mean that all paraphilias should be pathologized.

The clinical utility of these diagnoses is most clear in forensic settings. Citing Shumate et al. (2023), I would argue that the focus of diagnosis and treatment should be on those who have a paraphilic disorder and have sexually offended, with the primary objective being to reduce recidivism.

For individuals who have paraphilic interests but have not acted on them and are not causing harm to others, the clinical utility of a diagnosis is far less clear. For people who engage in consensual BDSM or who have fantasies and arousal without a risk of offending, the focus of treatment should not be on eliminating their sexual interest. Instead, the focus should be on helping them manage any distress or functional impairment that they are experiencing, particularly if that distress is a result of societal stigma and internalized shame.

The case study of Michael perfectly illustrates this point. He was distressed by his consensual masochistic interests because of his religious upbringing, not because the interests themselves were inherently pathological. In such a case, the goal of therapy would be to help him process and manage his internalized shame, not to diagnose him with Sexual Masochism Disorder and attempt to "cure" his sexual interest. I also want to mention that there is very little data on what is considered "normal" sexual behavior, which further complicates the clinical utility of these diagnoses.

Who is the best candidate for treatment?

Our final question is a poll, designed to test the understanding of the key concepts discussed throughout this course.

Who is the best candidate for treatment for paraphilic disorders? a) A patient who is practicing sexual sadism with a consenting adult partner. b) A patient who is experiencing significant distress due to their addiction to pornography. c) A patient who crossdresses and experiences arousal while doing so. d) A patient who has exposed his genitals to a nonconsenting person.

The correct answer is (d). The rationale is that treatment for paraphilic disorders, particularly the forensic-focused treatments discussed, is most appropriate for individuals who have caused harm to others through non-consensual behavior.

Options (a) and (c) involve consensual behaviors and would not be the primary focus of treatment. While these individuals may be experiencing distress, the treatment would be focused on managing the effects of societal stigma and internalized shame, not on eliminating the paraphilic interest itself. Option (b) is not considered a paraphilic disorder in the DSM-5. I want to reiterate the central theme of this presentation: the diagnosis and treatment of paraphilic disorders should be reserved for those who are causing harm to others, with the goal of reducing recidivism, and should not be used to pathologize consensual sexual diversity.

Conclusion

I urge clinicians to think carefully and critically about when to diagnose and when to treat paraphilic disorders. I would like to reiterate that the "consequences can be huge" when it comes to the potential for legal ramifications like involuntary commitment and the profound psychological burden of stigma. It is important to underscore the inherent complexities of distinguishing between sexual diversity and genuine pathology, and careful consideration should be taken when reviewing the ethical concerns surrounding the DSM's role in potentially pathologizing consensual behaviors. The core message here is to prioritize treatment for individuals who have caused harm to others through non-consensual acts, with the primary goal of reducing recidivism. For individuals experiencing distress related to consensual sexual interests, the focus should shift to addressing the impact of societal stigma and internalized shame, rather than pathologizing their sexual preferences. I hope that the "crash course" has "changed the way you think about paraphilic disorders" and how to diagnose or treat, and when to diagnose or treat, if at all. Thank you for your time.

References

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787

Brown, A., Barker, E. D., & Rahman, Q. (2020). A systematic scoping review of the prevalence, etiological, psychological, and interpersonal factors associated with BDSM. The Journal of Sex Research, 57(6), 781–811.

Herbenick, D., Bowling, J., Fu, T. C., Dodge, B., Guerra-Reyes, L., & Sanders, S. (2017). Sexual diversity in the United States: Results from a nationally representative probability sample of adult women and men. PloS one, 12(7), e0181198.

Dunkley, C. R., & Brotto, L. A. (2020). The role of consent in the context of BDSM. Sexual Abuse, 32(6), 657–678.

Joyal, C. C., & Carpentier, J. (2017). The prevalence of paraphilic interests and behaviors in the general population: A provincial survey. The Journal of Sex Research, 54(2), 161-171.

Moser, C. (2019). DSM-5, paraphilias, and the paraphilic disorders: Confusion reigns. Archives of Sexual Behavior, 48(3), 681-689.

Renaud, M. (2019). An examination of the relationship between the paraphilias and anxiety (Doctoral dissertation, Université d'Ottawa/University of Ottawa).

Sahoo, S., Pandiyan, S., & Chakravarty, R. (2023). Paraphilias: an update on nosology and diagnostic challenges. The Journal of Forensic Psychiatry & Psychology, 34(3-4), 371-385.

Shumate, J., Song, S. H., & Saleh, F. M. (2023). Paraphilic disorders, psychopathy, and those who sexually offend: a narrative review of treatment modalities. International Journal of Impotence Research, 1-7.

World Health Organization. (2019). International classification of diseases (11th ed.). https://icd.who.int/

Additional Current References

Please Note: The following resources have been included for members to view additional resources associated with this topic area. These resources were not used by the presenter when creating this course.

Abreu, R. L., Barrita, A. M., Sostre, J. P., Parmenter, J. G., & Watson, R. J. (2025). Interest in preexposure prophylaxis, cyberbullying, internalized stigma, and parental acceptance among Latinx sexual and gender diverse youth. Health Psychology, 44(3), 266–274. https://doi.org/10.1037/hea0001455

Hsu, K. J., Morandini, J. S., & Rudd, S. (2025). Cut from the same cloth? Comparing the sexuality of male cross-dressers and transfeminine individuals through the conceptual framework of autogynephilia. Archives of Sexual Behavior. Advance online publication. https://doi.org/10.1007/s10508-024-03053-7

Jabbour, J. (2025). Interest in BDSM: Structural, sexual, and personality factors. Dissertation Abstracts International: Section B: The Sciences and Engineering, 86(6-B).

Kirgios, E. L., Silver, I., & Chang, E. H. (2025). Does communicating measurable diversity goals attract or repel historically marginalized job applicants? Evidence from the lab and field. Journal of Experimental Psychology: General, 154(3), 624–643. https://doi.org/10.1037/xge0001699

McCauley, P. S., Eaton, L. A., Puhl, R. M., & Watson, R. J. (2025). Support from school personnel and in-school resources jointly moderate the association between identity-based harassment and depressive symptoms among sexual and gender diverse youth. Journal of Educational Psychology. Advance online publication. https://doi.org/10.1037/edu0000945