Three Principles for Navigating Autism and OCD

About the Author

Brenda Dater, MSW, MPH, is the executive director at AANE and the author of “Parenting Without Panic.” Brenda is a mom of three, and her eldest is an Autistic transgender woman. Brenda has facilitated parent support groups for over 20 years and thoroughly enjoys creating an environment where parents can find the support, information, and the community they need.

Over the years, I’ve learned a lot about Obsessive Compulsive Disorder (OCD) from Autistic individuals who have received a diagnosis and through expert resources like the International OCD Foundation (IOCDF). The IOCDF defines OCD as a condition that “occurs when a person gets caught in a cycle of obsessions and compulsions. Obsessions are unwanted thoughts, images, or urges that may be extreme or disturbing. The obsessions are accompanied by uncomfortable feelings such as fear, disgust, doubt, or a feeling that things have to be ‘just right.’ These obsessions occur over and over again and feel outside of the person’s control.”

The number of people who are Autistic and also have OCD is significantly higher compared to the non-Autistic population. Every person who is impacted by OCD will have their own journey and various responses to treatment. If you or your family member is Autistic and has been diagnosed with OCD, or if either diagnosis runs in your family, I want to share three important guiding principles.

Identify Autistic Traits vs. OCD Behaviors

The more I learn about this intersection, the more I am struck by how challenging it can be to determine if behaviors stem from Autism or OCD because recurring behaviors are part of both diagnoses. This is an important distinction to make as Autistic sensory needs or stimming plays a very different role compared to repetitive compulsive behaviors. 

Paying attention to how these behaviors make someone feel can help clarify their derivation and meaning. For example, Autistic individuals usually find stimming very enjoyable and calming. On the other hand, behaviors that result from obsessions and compulsions usually make a person feel distraught and upset, and they wish they could stop doing them. While taking away an Autistic person’s stimming behaviors causes more stress and dysregulation, addressing OCD behaviors helps individuals find relief. I am grateful to see a shift in professionals and families understanding that Autistic stims are purposeful and helpful to the Autistic individual experiencing them. We shouldn’t try to minimize or replace these stims, unless they are harmful.

Don’t Shame or Blame 

One of the most important things to recognize is that OCD behaviors are not the person’s fault. An Autistic adult I recently talked to shared that her family thought she was faking her OCD behaviors as well as her Autistic traits because they had seen her force herself to minimize them in certain situations. They told her that this meant she could stop if she really wanted to. She tried to explain to them how masking her behaviors led to a long depressive episode, but after experiencing their lack of receptiveness, eventually she felt she no longer had the energy to argue her position or try to educate them. Ultimately she had to make the very hard decision to reduce contact with them as it was negatively impacting her mental health further. The same way no one should chastise themselves or be criticized for having Autistic traits, no person should be ashamed or deserves to be blamed for their obsessive compulsive behaviors. OCD is a condition that should be met with understanding, compassion, and support.

Find Support that Understands the Intersection of Autism and OCD

Standard treatment for OCD can include things like medication, exposure response therapy, or cognitive behavior therapy. When someone is also Autistic, it’s important to seek support from professionals or programs who understand how autism might impact treatment for OCD. For example, therapy sessions might be shorter to allow for more breaks, but the number of sessions may need to be increased. Many Autistic individuals are more sensitive to medications so it is often recommended to start with a lower dose. Sometimes Autistic children do not tolerate medications or have a good response initially, and trying medication again in adulthood can yield better results. Most of all, it’s important for Autistic individuals with OCD, caregivers, and professionals to decide the best course of treatment together.

Unfortunately, finding professionals with expertise in both autism and OCD is not easy. We all need to advocate for more research and the development of highly trained professionals who know how to navigate this intersection effectively.

Of the thousands of Autistic people that connect with AANE each year, many also experience OCD. We want everyone in our community to feel supported, understood, validated, find a place that is safe and non-judgemental, and know they are not alone. The IOCDF is a fantastic resource to give comprehensive information and practical guidance, and anyone in need of support can always reach out to us at AANE.