Co-Occurring Autism and OCD–What to Expect

How would you react if your nine-year-old, for no apparent reason, suddenly started touching walls for hours? If he couldn’t put on his socks or walk through a door for over 40 minutes? If he got down on the filthy floor and tried to gnaw it repeatedly?

This was my reality with my son Andrew. Autism was hard enough to deal with, but OCD as well?

What is OCD?

As the International OCD Foundation explains, OCD “occurs when a person gets caught in a cycle of obsessions or unwanted, intrusive thoughts, images or urges that trigger intensely distressing feelings and compulsions, behaviours an individual engages in to attempt to get rid of the obsessions and decrease distress.”

Obsessive thoughts are wide-ranging and can include fear of germs, hurting others, poor health, dying and offending God, among others. Compulsive rituals also vary, from washing one’s hands until raw to touching objects repetitively, tapping, counting, checking, and constantly asking for reassurance.

Individuals with OCD know their thoughts are irrational, but their brains override reason and compel them to perform rituals to obtain relief from their unwanted thoughts. The compulsions are equally irrational and may not be logically connected to the obsession, except that they provide relief. Unfortunately, relief is only temporary, leading to an endless cycle of obsessions and compulsions.

How is OCD diagnosed and treated?

As with autism, there are no medical, lab or blood tests that diagnose OCD. We all have distressing thoughts and perform ritualistic behaviours from time to time, but for a diagnosis of OCD to be made:

• Obsessions and compulsions must consume more than one hour every day
• They must cause intense distress
• They must interfere in a meaningful way in your child’s daily functioning

Treatment usually involves a combination of medications and therapy.  Dr. Robert Hudak, Professor of Psychiatry at the University of Pittsburgh School of Medicine, explains that the gold standard for treatment is a type of cognitive behaviour therapy called Exposure and Response Prevention (ERP).

Exposure refers to confronting those unwanted, obsessive thoughts, while response prevention refers to the person agreeing not to perform the ritual.  The goal is to reduce the power and intensity of the obsessions and to retrain the brain to no longer respond to distressing thoughts.

Andrew learned that he couldn’t control his thoughts but could control what he did about them, no matter how frightening.

What are some of the complications of diagnosing an autistic child with OCD?

Many autistic children experience:

• Restricted interests, with a hyper-focus or fixation on a specific interest, such as trains or birds.  These interests can be very narrow: Dr. Hudak has one patient, for example, who is laser-focused on local transit authority buses, not all buses.
• Repetitive and Restrictive Behaviours (RRBs) include repeatedly putting toys in order, repeating words or phrases, or continually apologizing. These can also include aversions to certain textures, smells, tastes, sounds, and temperatures due to sensory sensitivities.

Dr. Hudak notes that obsessions and compulsions can look like Restricted Interests and RRBs on a superficial level, although the symptoms themselves are very different. This superficial similarity makes diagnoses more difficult, and, as a result, OCD is often overdiagnosed in autistic children. He emphasizes that there’s a key, fundamental difference between autism and OCD:

• In autism, RRBs are soothing, self-regulating and can even provide pleasure.
• In OCD, these behaviours are driven by those unwanted, intrusive thoughts.  Our kids are in distress, and we want to get rid of them.

OCD can be particularly difficult to identify in non-speaking or minimally speaking children who cannot easily describe their thoughts. Dr. Hudak says the diagnosis is made through observation and parental input in these cases.

What treatments help autistic children with OCD?

As we know, no medication treats the core symptoms of autism. Approved medications instead target behaviours often associated with autism, such as meltdowns and emotional dysregulation.

Anti-depressant SSRIs (selective serotonin reuptake inhibitors) are commonly prescribed for OCD.  Interestingly, Dr. Hudak has found that while some autistic children have difficulty tolerating them due to severe side effects, many of these same children respond well to SSRIs as adults.

ERP is still the treatment of choice for children with both conditions, although autistic children with OCD often need modifications.

What are common modifications for autistic children with OCD?

Modifications need to be customized according to each child’s unique needs and expectations.  Common modifications include:

• Simple, concrete explanations, given in small chunks
• Visual supports, such as social stories and photographs
• Very specific assignments
• More frequent breaks and shorter sessions as needed
• Increased repetition due to processing speed, including asking the child to repeat back in their own words to ensure their understanding

Augmentative and alternative communication (AAC) systems can be helpful for non-speaking or minimally speaking children or those who stop communicating when they become overwhelmed or over-stimulated.

What about parental involvement?

OCD is a family affair. Parents and caregivers should be involved from the start. We must first learn to recognize when a behaviour is OCD (causing distress and anxiety) or autism (which can be pleasurable). To this day, it’s difficult for me to determine at times if Andrew is performing a ritual due to his OCD or stimming due to his autism.

If it’s OCD, it’s important not to accommodate the OCD.  If you’re going to be late to an appointment because your daughter can’t open the car door due to an irrational fear of germs, learn to be late or reschedule instead of opening the door for her. Doing so actually heightens her distress and anxiety by allowing her to avoid facing her fear. It fuels her OCD.

We must, however, be pragmatic. As Dr. Hudak notes, “Your goal is not to be the lion tamer, cracking the whip. The idea is to be a coach, helping your child follow through on assignments given to them by their therapist. The therapist will usually tell you very specifically what you are to do as a coach. Sometimes, families must agree to make accommodations to get through the day. The ERP therapist will tell you when that’s OK.”

He also reminds us to be patient. “Know it’s going to take a long time, with slow, incremental steps.”

Our children are trying to live with uncertainty, manage their discomfort, and persevere no matter what they face.  Keep hope alive and move forward together, one step at a time. You can do it.