OCD and autism: where does one begin and the other end?

As an autistic woman with a series of co-occurring mental health conditions, I have spent many therapy sessions reflecting on the connection between my obsessive compulsive disorder (OCD) and autism. The two exist separately, but align often, creating a unique mix of disorder influenced by neurodiversity.

There’s an estimated 17% of autistic people diagnosed with OCD (as opposed to the 1.6% of the general population). The connection is clear, but the distinction clouded – how can we treat one without undermining the other?

Autism is a neurological condition often characterised by communication differences, sensory overwhelm, and special interests, affecting around 1.76% of people in the UK. Being autistic in a society designed for neurotypicals means that it is often incredibly challenging to navigate the world beyond our own community.

In the wider scope of neurodiversity, our perspectives, perceptions, and understanding of autism are shifting — a young boy with ear defenders and a fascination with trains isn’t representative of a vast number of autistic people. Our cognitive make-up is diverse and varied, and whilst my experience won’t align with the stereotype, my identity remains valid, important, and worthy of support.

What’s the connection between autism and OCD?

OCD is often experienced as a cycle of anxiety where obsessive and intrusive thoughts trigger repetitive behaviours or mental acts that temporarily relieve the distress of the obsessive thought. Used to assess and diagnose mental health conditions, the DSM-5 criteria for OCD specifies autism as a potential alternative diagnosis due to the shared trait of “repetitive patterns of behaviour”, whilst a 2015 analysis reports that both autism and OCD can icilit “unusual responses to sensory experiences”. Shared behaviours and characteristics make it difficult to distinguish between the sameness that many autistic people require, and the ritualised behaviours that people with OCD perform.

What happens when someone isn’t one or the other, but is instead both? The difficulty with coinciding symptoms and comorbid conditions means that autistic people who have OCD often have different lived experiences and require alternative adaptations to their treatment.

Is there a cause of OCD or autism?

As Sarah Gibbs once said; “there is literally no reason to find out what causes something unless you’d like to prevent it.” By their very nature, psychological, psychiatric, and neurological conditions are incredibly complex, sometimes triggered by biological make-up, or as a response to trauma. Both neurodiversity and mental health conditions can be hereditary and connected to a familial biology susceptibility, but unlike some disorders, autism is not triggered by a trauma.

What does identity have to do with it?

The first-person identification often associated with autism is something that resonates with me, and helps to distinguish between the two diagnoses. I am autistic, it’s not something added on, it’s hardwired into my brain and body and can’t be “cured”, “solved”, or “changed”. OCD is a disorder that has a clear treatment path with an end; to no longer “have” it. It’s something I want to lose, I want to move on from; and that can happen. I am instead an autistic person who has OCD, a simple way of differentiating between support and management, and treatment and recovery.

How do you treat OCD?

ERP (Exposure and Response Prevention) therapy is a specific type of exposure therapy designed to treat OCD, held under the umbrella term CBT (Cognitive Behavioural Therapy). ERP is about confronting compulsions and triggering obsessions, acknowledging the anxiety caused as a result, and waiting for it to subside without performing the compulsive behaviour. This treatment trajectory reportedly has a 75% efficacy rate, and can also include prescribed medication designed to alleviate symptoms from a biological standpoint, in conjunction with talking therapy.

Whilst this treatment is widely understood as the “current gold standard of psychotherapy”, I believe there is room to interrogate the intersection of treatment for neurodiversity and disorder, and to investigate how we can accommodate each and every person in the community.

How can I support an autistic person with OCD?

The reality is, CBT doesn’t suit everyone, and it’s necessary to adapt the therapeutic approaches needed to treat OCD to accommodate the 17% of autistic people who experience the disorder, too. Reportedly, 64% of therapists have not received specific training on autism, even though 90% have had experience working with an autistic person. Reasonable adjustments and adaptations are unique to each person, but below are some suggestions from an #actuallyautistic person with OCD for how therapists and institutions can facilitate a more inclusive approach to treatment and support.

• Be neurodiversity-affirming, and listen to those with lived experience. It’s confusing to navigate which autistic behaviours are masquerading as OCD, and vice versa. Provide a safe and supportive space for autistic people to be uncertain of the origin of compulsions, and work with them to sit with the unknown.
• Establish the difference between healthy sensory regulation (e.g. stimming) and OCD symptoms. OCD behaviours are often inherently tied to using certain actions as coping strategies. “Repetitive patterns of behaviour” appear in both diagnostic criteria, but with different meanings. Ensure that autistic people aren’t denied healthy self-management of their neurodiversity. 
• Consider sensory overwhelm and cognitive inflexibility. Autistic people often struggle with picturing different outcomes to imagined or hypothetical situations. Graded exposure, which is a core tenet of the approach, can be incredibly challenging. Work with not against autistic people, and allow for an agile approach to treatment that can shift and change where appropriate.
• Compensate autistic people for sharing their expertise and advice. Systemic barriers are making it increasingly difficult for people (particularly neurodivergent people) to access support. Long waiting lists, lack of knowledge about autism, and inconsiderate medical spaces all create barriers and place limits on our access. Paying people with lived experience for their advice on how systems can be made more accessible will provide invaluable insight and perspective into the future of our collective wellbeing.
• Honour neurodiversity with support, not treatment. Acknowledge co-occuring conditions and disorders, and make room for autistic people to reflect on their identity as occupying both neurodiversity and disorder, with the view to nourish the former, and recover from the latter.

Resources:

What is Exposure and Response Prevention (ERP)? | OCD-UK

What’s the difference between CBT and ERP?

Repetitive behaviours in autism and obsessive-compulsive disorder: new perspectives from a network analysis

Untangling the ties between autism and obsessive-compulsive disorder | Spectrum

I’m Autistic With OCD. Here’s How My Therapist And I Made ERP Work For Me | NOCD

METTE is a writer, collector, and curator working at the junction between print, audio, and interdisciplinary projects. Receiving an autism diagnosis at age twenty one she has a vested interest in representation and accessibility.

Mette

METTE is a writer, collector, and curator working at the junction between print, audio, and interdisciplinary projects. Receiving an autism diagnosis at age twenty one she has a vested interest in representation and accessibility.

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