Dr. Jonathan Hoffman
Overview of Diagnosing and Treating Obsessive-Compulsive Disorder (OCD) in Autism Spectrum Disorder
Updated: Jul 28, 2022
This article aims to provide an overview of diagnosing and treating Obsessive-Compulsive Disorder Obsessive-Compulsive Disorder (OCD) in the context of Autism Spectrum Disorder (ASD) for impacted individuals and their loved ones.
In recent years, awareness that individuals on the autistic spectrum also often meet diagnostic criteria for one or more psychiatric conditions continues to increase. OCD is now well-recognized as being among the most common of such co-occurring diagnoses; it is a potentially debilitating condition that is characterized by obsessions, which are intrusive thoughts, images or sensations and “urges” to neutralize them by performing compulsions (rituals) or engaging in avoidance behaviors. OCD and ASD are often synergistic, each condition feeding into the other.
Diagnosing OCD When ASD is Present
It is important to identify the presence of OCD in those diagnosed with ASD as soon as possible so that it can be effectively treated. OCD is often progressive, bottlenecking the individual's progress and also adversely affecting family and other loved ones who very often may not sure what to do or where to find accurate information or good treatment resources.
OCD can be challenging to identify in the context of Autistic Spectrum Disorder (ASD); all too frequently it is a delayed or missed diagnosis. ASD-related restrictive-repetitive behaviors (RRBs) — e.g., lining up or excessively focusing on certain objects or topics— can look very much like OCD-related compulsions; hence, they can be very difficult to differentiate from them. However, whereas RRBs are often performed to maintain sameness or to achieve gratification, compulsions are typically performed to reduce fear or anxiety.
In many instances, RRBs and OCD become very closely inter-twined. As of yet, there is no widely accepted term for RRBs that are virtually indistinguishable from OCD symptomatology; one possibility might be calling them "obsessive-compulsive behaviors."
OCD can occur in children, adolescents or adults on the ASD spectrum. Children on the spectrum, however, tend to manifest certain OCD symptoms less frequently than children diagnosed with OCD but not ASD, e.g., sexual or religiously themed obsessions.
Overshadowing issues such as self-harm, aggression, depression, anxiety or ADHD can disguise the presence of OCD in people on the spectrum. Moreover, even if they find their OCD symptoms troublesome, people on the ASD spectrum often do not or cannot communicate effectively about them. Being extremely literal can impede the diagnostic process for some of these individuals as well. Parents or even healthcare professionals may erroneously infer that OCD symptoms "are just part of autism.” In fact, this is a common misunderstanding.
There is no definitive medical or psychological test for OCD that a person with ASD can take.
Findings of any single test must be considered in respect to a multitude of other factors, for example, the examiner’s behavioral observations and information gleaned from family members or teachers, for example. Therefore, diagnosing OCD in the context of ASD is ultimately clinical in nature and depends on the examiner's skill and acumen— especially when it comes to teasing apart RRBs and compulsions.
The formal diagnosis of OCD is ultimately made in respect to criteria described in the Diagnostic and Statistical Manual (DSM) or International Classification of Diseases (ICD). Given its prevalence, routine OCD screening for anyone who has been diagnosed with ASD is highly suggested. (It goes the other way around too; ASD screening for people diagnosed with OCD is also a good idea; ASD is far more common and goes undetected among those with OCD than most people realize.)
Those with OCD presenting in ASD often also have additional layers of comorbidities, including ADHD, Tic Disorders and Thought Disorders. Such comorbidities must be carefully evaluated in consideration to the overarching ASD context as well as how they intertwine with OCD.
Modifying OCD Treatment for ASD
OCD treatment must be modified significantly in consideration of ASD. For instance, as a general rule, OCD treatment concepts should be communicated in especially clear, simplified and behaviorally specific terms and there should also be a higher incorporation of visual aids -- in many instances regardless of whether the impacted person is highly intelligent or academically advanced. Also, there needs to be more focus on helping treatment generalize across settings, as this is often a concern in this population. OCD treatment in this population is replete with nuances, which often makes treatment more complicated and time-consuming.
In ASD, OCD treatment is ideally collaborative and utilizes an interdisciplinary team approach. In addition, there is often a need for more engagement of family and other caregivers in the process than is typical of OCD treatment in general. Reducing any over-accommodation (enabling, some would say) of OCD symptoms in the family, school, or workplace structure is often a necessity. Parents are often perplexed by “what is ASD and what is OCD?” and uncertain which behavior is reasonable for them to accommodate and which is not.
What happens when the family is willing to get assessment and treatment, but the impacted person isn’t? Unfortunately, this is all too common. Often, a good first step would be for the family members to consult with a clinician that has experience with these situations and can provide education and guidance on how best to proceed.
Yet, at its heart, the treatment of OCD is very much for persons on the ASD spectrum as for those without ASD -- its mainstay is a form of cognitive-behavioral therapy (CBT) called Exposure and Response Prevention, abbreviated as ERP. ERP is a treatment process which involves systematically challenging feared thoughts or actions while simultaneously refraining from compulsions or avoidances. In ASD, however, ERP tends to focus more on response prevention than exposure. Conducting ERP is generally more straightforward the less OCD symptoms are intertwined with RRBs.
SSRIs (e.g., Prozac or Zoloft) are the primary medications prescribed for treating OCD in the context of ASD, just as they are for anyone else with OCD. SSRIs are often used in combination with ERP, especially when OCD symptoms are severe— however, as with all psychiatric medications, they must be carefully tailored to the specific medical and psychological profiles of anyone diagnosed with ASD. In ASD, very severe or complex OCD may warrant intensive or residential treatment.
To date, research on the effectiveness of OCD treatment for individuals on the spectrum appears promising. However, much of this research concerns individuals who would have been diagnosed with Asperger syndrome until 2013 when this diagnosis was folded into the ASD category in DSM-5. More studies are needed about those who are less verbal or have intellectual disabilities.
Organizations such as the International OCD Foundation (IOCDF) continue to raise awareness of the prevalence of OCD in ASD and provide educational and training opportunities for interested clinicians.
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