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 focuses on the treatment of OCD in autistic persons. From the outset, it is essential to understand that OCD cannot be effectively addressed without understanding the autistic individual’s profile of cognitive, communication, and interpersonal strengths and weaknesses. Prior to, or concurrent with OCD treatment, some autistic individuals may benefit from receiving targeted assistance in social skills, executive functioning, communication, recognition of emotions, and/or self-regulation. When designing a viable treatment plan, medical variables must also be taken into consideration.
OCD treatment for autistic individuals has been found to be both feasible and effective. When the “gold standard” for treating OCD with exposure and response prevention (ERP) is adapted to the individual needs of those with autism, results have been encouraging among children and adults alike. Yet, despite such promising findings, autistic individuals often do not receive evidence-supported OCD treatments at the same rates, or as early in their lives, as non-autistic persons.
On one hand, the autistic population has long suffered from many misconceptions about being difficult to aid and communicate with. However, there are often changes made in how these principles are applied (or may look) on the basis of the individual’s profile, including their level of intellectual functioning. That being said, the general outlines of treatment for autistic people aren’t really different from those used to treat people not on the spectrum. The general principles of treatment for autistic people living with OCD remain the same. Keeping in mind differences in terms of language, social understanding, relatedness (depending upon each person), sensory-motor needs, processing speed, and memory is of paramount importance in adapting ERP to meet the particular needs of autistic persons.
On the other hand, it should be understood that autism represents a different type of neurobiological operating system, and we should not automatically assume that we have the right or need to impose change — including OCD treatment — on those who fall within its boundaries. Many treatment providers start therapy with lower expectations than they might have for their non-autistic clients, which is often unwarranted.
However, the bottom line is that autistic persons with OCD have as much right to treatment as anyone else. When OCD treatment is properly modified, autistic persons can be greatly helped to eliminate compulsions, reduce anxiety and avoidance, increase feelings of efficacy, improve their mood, and increase cognitive flexibility, self-care, and social functioning. Whether or not core features of autism will improve along with improvements in OCD symptoms varies case-by-case.
It should be noted that many autistic individuals may not be motivated to challenge OCD, as they may find the idea of change too upsetting or cannot differentiate their sense of self from OCD symptomatology. Therefore, the first goal should be to collaborate and help them to understand how treatment can improve the quality of their lives. Some autistic individuals, however, may not readily agree to give up behaviors that they perceive have worked for them, even if the benefits they derived are only short-term or very limited. In general, when communicating with an autistic person about OCD treatment, it cannot be overemphasized that they usually think more concretely, generalize less, have more difficulty in labeling their emotions, and often do not pick up on language subtlety and figures of speech.
The therapeutic relationship is important in treating autistic people with OCD, though it may look different in terms of relatedness and other social behavior. This is to be expected, as a difference in reciprocal social interaction is another core feature of autism. Openness and acceptance are key. It is important to respect the goals of the autistic person for reducing OCD rather than just judgmentally imposing goals on them. It is best to keep therapy structured and use clear and concise explanations. Differences in processing speed for new information, executive functioning, and the time it takes to respond to questions should also be considered. ERP sessions need to be highly structured, with frequent reviews of past work. For some autistic people who may be particularly distractible, the length of each OCD treatment session may often need to be shorter.
An OCD treatment plan for an autistic individual often begins with a thorough behavioral analysis (not to be confused with Applied Behavioral Analysis), which includes information from the impacted person as well as family and helpers. Homework assignments may need to be carefully scaled in terms of the individual’s unique needs, and clients should always have as much input as possible in choosing assignments. These are most effectively provided in a visual format, as autistic persons tend to be visual learners. Structure in the form of checklists, reminders, and daily schedules will help many autistic individuals increase adherence to the OCD treatment plan. For some autistic individuals, their intense area of interest may be useful to incorporate into the OCD treatment plan as well. Other autistic individuals may need to receive tangible reinforcers to meaningfully engage in OCD treatment, especially at first.
If the OCD symptoms of an autistic individual do not respond adequately to lower levels of treatment, intensive outpatient or a residential or hospital-based treatment program may be warranted. At the same time, it must be acknowledged that accessing such higher levels of OCD treatment for autistic individuals can be difficult due to a lack of programs that are experienced in making the necessary modifications for this population, as well as the reality of logistical and financial constraints. On a more optimistic note, however, we know many individuals and families who were in the most seemingly hopeless situations but were able to eventually turn their lives around.
Just as measures of and treatments for OCD were not constructed with consideration to autistic individuals, neither were OCD medications. Currently, this is an area for which there are no accepted guidelines, but in practice, OCD is often treated psychopharmacologically in this population using similar medications, with selective serotonin reuptake inhibitors (SSRIs) being the first-line agents. They should generally be used according to normal OCD protocols. There are also no medications currently approved for the treatment of autism’s core symptoms. Therefore, psychiatrists and other professionals prescribing medication for OCD occurring in autistic persons should do so with these caveats in mind. Learn more about medication treatment for OCD in general.
In clinical settings, medications are used to treat certain manifestations that occur as a result of autism, such as irritability, emotional dysregulation, or aggressive behavior. There are two medications that are approved to treat irritability and aggressive behavior in autism — risperidone and aripiprazole. Other medications that have been examined for irritability in autistic persons include clozapine and haloperidol. These medications all belong to the category known as antipsychotics and require close monitoring by the prescriber due to the potential for significant side effects. As a result, best practice does not suggest using these medications as first-line treatment. However, when antipsychotics are needed, it is preferred to use second-generation medications (e.g., risperidone and aripiprazole). Other medications appear to show improvement in irritability and aggressive behavior in many autistic patients, specifically SSRIs. Due to the ability of SSRIs to produce relief from irritability in autistic individuals (which in many patients is likely secondary to an increase in anxiety — a typical autistic trait) without requiring the monitoring or having the side effect burden of antipsychotics, it is recommended to use them as first-line treatments for irritability in autism.
Studies have also looked at the use of SSRIs for repetitive behaviors in autism, as well as using SSRIs for comorbid OCD symptoms. However, many of these studies have flaws. Some of the studies – particularly those that are older — also do not seem to distinguish between the restricted interests and repetitive behaviors of autism and the obsessions and compulsions of OCD. While that means that some caution is advised in interpreting those studies, certain conclusions can be drawn nonetheless.
Research suggests that SSRI use in autistic children can cause significant side effects such as irritability, impulsivity, or increased behavioral activation. However, autistic adults taking SSRIs seem to tolerate them well and demonstrate no greater rate of side effects than would be found in the general population. Additionally, SSRIs show efficacy for OCD symptoms and repetitive behaviors. This is why SSRIs remain as the first-line medications in autistic individuals for OCD and anxiety disorders, as well as for repetitive behaviors and irritability. However, SSRIs may have lower efficacy and greater side effects in children, and therefore should be prescribed advisedly.
It is important to note that failure of SSRI trials either due to lack of efficacy or side effects for a child does not preclude the use of the same medication in adulthood. It is common for an autistic child to have significant SSRI side effects but have a strong positive response with minimal problems as an adult. Accordingly, the common wisdom that SSRIs should not be used in autistic individuals with OCD is incorrect and must be challenged.
On a related side note, there are numerous other conditions that can occur in autistic individuals at greater rates than in the general population, such as misophonia (intolerance to certain sounds), hyperacusis (intolerance to loud noises), and synesthesia (crossing of the senses, as in seeing sounds with distinct colors). While there are no known medical treatments for these conditions, SSRI pharmacotherapy is recommended if they trigger an excess of anxiety or OCD in an autistic individual.
A Call to Action for Further Investigation
Treatment studies of OCD in autistic individuals have often been inconsistent or hampered in their findings. A large amount of variability in measuring OCD symptoms among these studies adds immense difficulty in identifying treatment targets, providing accurate psychoeducation regarding the treatment process and what to expect, and evaluating treatment responsiveness. Adding to this problem, the majority of data and findings have come from clinical samples, and therefore are not likely an accurate representation of OCD among autistic individuals in the more general community. There is also a need for greater clarity regarding an agreed-upon definition of OCD that reflects its unique presentation in autistic persons.
Regarding directions for research, more investigation of autism-adapted treatment is needed — particularly for children and adolescents, as the majority of treatment research around OCD and autism has been limited to adult samples. Future research concerning the treatment of OCD in autistic persons should include samples of individuals with autism and OCD who are recruited from the general community, in order to better represent a wider range of intellectual, verbal, and demographic variables.