Autism and OCD Co-occurrence: What to Expect and How to Stay Hopeful

If your 9-year-old child suddenly begins touching the walls for hours with no apparent reason, how would you react? Or, if they can’t put on socks or walk through a door within a 40-minute window? What if they lie on the dirty floor, repeatedly biting it?

These are the daily struggles I face with my son, Andrew. Autism is already challenging enough, but what happens when Obsessive-Compulsive Disorder (OCD) becomes a co-occurring condition?

What is OCD?

According to the International OCD Foundation, Obsessive-Compulsive Disorder (OCD) is a condition where individuals become trapped in a cycle of unwanted, intrusive thoughts, images, or impulses. These thoughts provoke intense emotional distress, and individuals perform certain actions (compulsions) in an attempt to reduce the discomfort caused by the obsessions.

Obsessive thoughts can vary widely, from fears of contamination and harming others to concerns about health, death, or offending God. Compulsive rituals can range from washing hands to repetitive touching of objects, tapping, counting, checking, and seeking constant reassurance.

People with OCD know their thoughts are irrational, but their brain overrides reason, compelling them to perform rituals in an effort to eliminate the distressing thoughts. Unfortunately, these rituals provide only temporary relief, leading to a continuous cycle of obsessions and compulsions.

How is OCD Diagnosed and Treated?

Like autism, OCD doesn’t have a specific medical or laboratory test for diagnosis. While it’s normal for everyone to experience distressing thoughts and engage in occasional rituals, a diagnosis of OCD requires that:

1. Obsessive thoughts and compulsive behaviors occur for over an hour a day.
2. These behaviors cause significant distress.
3. They interfere meaningfully with the child’s daily functioning.

Treatment typically involves a combination of medication and therapy. Dr. Robert Hudak, a psychiatry professor at the University of Pittsburgh School of Medicine, explains that the gold standard for treatment is Cognitive Behavioral Therapy (CBT) using a technique called Exposure and Response Prevention (ERP).

ERP involves exposing the individual to distressing obsessive thoughts while preventing them from engaging in compulsive rituals. The goal is to diminish the intensity and power of the obsessions, retraining the brain to stop responding to the distressing thoughts.

Andrew realized that while he couldn’t control his thoughts, he could control his actions, no matter how terrifying those thoughts might be.

Complexities of Diagnosing OCD in Children with Autism

Many children with autism exhibit restricted interests, obsessing over specific things like trains or birds. These interests can sometimes be very narrow, such as focusing exclusively on the local bus system rather than all buses, as Dr. Hudak mentions with a patient of his.

Repetitive and restrictive behaviors (RRBs) include things like repeatedly organizing toys, repeating words or phrases, or constantly apologizing. They can also involve sensory sensitivities that make certain textures, smells, tastes, sounds, or temperatures intolerable.

Although OCD and RRBs are distinct behaviors, they can sometimes appear similar. This overlap can make diagnosis challenging, leading to an overdiagnosis of OCD in children with autism. Dr. Hudak emphasizes a critical difference between the two:

For children with autism, RRBs are self-soothing, regulatory behaviors that can even bring joy. In contrast, OCD-driven behaviors are a response to intrusive, unwanted thoughts that cause suffering, and the child engages in the behaviors to escape the pain.

Identifying OCD in non-verbal or minimally verbal children is particularly tricky, as they cannot easily describe their thoughts. In these cases, the diagnosis is often based on observation and input from parents.

Treatment Options for Children with Both Autism and OCD

There are no medications that specifically target the core symptoms of autism. Approved medications are aimed at managing common behaviors associated with autism, such as emotional meltdowns and mood regulation.

Selective Serotonin Reuptake Inhibitors (SSRIs), a class of antidepressants, are commonly used to treat OCD. Interestingly, Dr. Hudak has observed that while some children with autism struggle with severe side effects from these medications, many of these children respond well to SSRIs as they reach adulthood.

For children with both conditions, ERP remains the primary treatment, although adjustments are often necessary for children with autism who also have OCD.

Common Modifications for Treating OCD in Autistic Children

Treatment plans must be tailored to each child’s unique needs and abilities. Some common modifications include:

• Providing simple, clear explanations in small segments.
• Using visual supports like social stories and pictures.
• Offering very specific tasks.
• Increasing the frequency of breaks and shortening session times.
• Using repetition to accommodate faster processing speeds, and asking children to restate instructions in their own words to ensure understanding.
• Using augmentative and alternative communication (AAC) systems for non-verbal or minimally verbal children, or those who stop communicating due to feeling overwhelmed or overstimulated.

The Role of Parental Involvement

OCD is a family matter. Parents and caregivers must be involved from the outset. We must first learn to distinguish whether a behavior is driven by OCD (causing distress and anxiety) or by autism (which may be soothing or pleasurable). Even today, I sometimes find it hard to tell if Andrew’s rituals are driven by OCD or by his autism.

If it’s OCD, it’s crucial not to indulge the behavior. If your child refuses to open the car door due to an irrational fear of germs and it causes a delay, it’s important to either accept the lateness or reschedule, rather than open the door for them. Accommodating this fear only reinforces the cycle of avoidance and intensifies their anxiety.

However, we must be pragmatic. As Dr. Hudak states, “Your goal is not to be a lion tamer with a whip. Your goal is to be a coach who helps your child complete the tasks the therapist has assigned. Therapists will give you specific instructions on what to do as a coach. Sometimes, families need to make adjustments just to get through the day, and ERP therapists will tell you when this is appropriate.”

Conclusion

The co-occurrence of autism and OCD can make daily life even more challenging, but it’s important to remember that progress is possible, one step at a time. By staying informed, engaged, and patient, both parents and children can navigate this journey with hope and resilience.