Note: While the term “autism spectrum disorder” (ASD) is utilized in the most widely used professional diagnostic manual, the DSM-5, we consider the differences associated with autism as an aspect of the individual’s identity rather than inherently being a disorder. Accordingly, identity-first language such as “autistic” is used throughout this writing, as preferred by many with lived experience.
This section recognizes that OCD symptomatology in autistic individuals, including children and adults, has a high impact on their families. Families that understand how to effectively respond to an autistic relative with OCD are likely to experience better outcomes, as well as higher quality of life.
Family Dynamics
A family with one person who has OCD and autism is more likely to have other individuals who have one or both of these conditions. This is why — whenever possible — a solid OCD treatment plan for any given autistic person includes an educational or actively therapeutic family component inclusive of as many family members as possible.
Parents/caretakers and other family members often accommodate OCD symptoms. This basically means that they either actively participate in OCD symptoms such as compulsions or create an environment that lessens OCD triggers. They do this for many reasons, from demonstrating care and love or to avoid conflicts. Whatever the rationale, accommodating OCD symptoms results in increased symptoms in the long run. Therefore, a key aspect of family therapy for OCD aims to reduce accommodating behaviors as much as possible.
However, accommodation is a tricky subject in autistic individuals. Accommodation strategies for autistic symptomatology per se are very common and often necessary. As a result, it is inherently more complex for the family members of an autistic person with OCD to navigate what makes sense to accommodate and what does not. Since they are used to accommodating autistic symptomatology, being asked not to do so for OCD can be confusing and feel wrong.
On top of this, families can get lost in unproductive attempts to figure out what is OCD and what is autism. Usually, they are better off leaving this to the professionals and focusing their efforts on accessing effective OCD treatment.
One suggestion for parents or other family members is to ask themselves about accommodating the OCD symptoms of an autistic family member “Is my involvement promoting independence from OCD in the long term?” If the answer is “yes,” then they can feel more confident that they are supporting progress. If the answer is “no,” they need to consider that, in reality, they are actually just supporting OCD.
Autism-related differences in social interaction and communication, as well as differences in emotion regulation, and more concrete thinking patterns can impact family relationships at any age.
OCD/Autism in Schools
Under federal law in the United States, both autistic children and those with OCD are entitled to an IEP (Individualized Education Program) that affords them with specific support and academic accommodations (click here for more information about student rights in the school setting). However, schools may not always have a nuanced understanding of what OCD entails and how to effectively respond to it, especially if a child is enrolled in an autism-specific academic program.
Additionally, many professionals who work with developmental disabilities may be unfamiliar with effective strategies for managing OCD in the classroom. Families are often the ones who must be “first informers” to the school about what understanding and helping an autistic student with OCD actually entails (click here for more information about how to talk to school staff). This can take place at parent-teacher conferences, or in formal meetings regarding the child’s IEP. If the family of an autistic child is working with an OCD provider, asking them to join one of these meetings to explain their child’s needs is a good idea (click here for more information about who to bring to a school meeting).
What if they don't want help?
Despite best efforts, there are situations in which an autistic person with extremely debilitating symptoms refuses to accept help, and for all intents and purposes is holding family members or close ones “hostage” to OCD. Situations like this have been known to fester for years, but often eventually come to a point requiring a crisis intervention. Taking such steps in regard to an autistic individual with OCD is emotionally difficult and requires careful consideration, as there are always risks involved. Sometimes, it is the only recourse left to help a loved one who cannot help themselves enter treatment. In these dire situations, it is also important for even the most dedicated family members to face reality and take care of themselves.
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