13/01/2026
Autism and repetitive behaviours. When is it OCD?
Today, via the NHS, my daughter Shola received her diagnosis of Obsessive Compulsive Disorder (OCD). You may raise your brow when I tell you that this comes as a huge relief. The thing is; when your child is considered to have what is referred to as ‘complex autism’ it can take years of observations and ‘unpicking the puzzles’ to determine what the individual conditions contributing to a ‘complex’ case of autism actually are. Complex Autism, is when an autistic individual also has multiple co-occurring conditions, such as learning and speech disabilities (being the most common) but it can also be accompanied by the presence of one, or multiple co-morbid (commonly related and existing together) disorders or conditions, which can be psychiatric, or physical. The complicated thing about co-occurring disorders is that they can interact with each other, intensify each other, and have overlapping symptoms.
Shola’s OCD diagnosis joins her already existing diagnosis’ of Autism, ADHD, Anxiety, Speech Impairment, and Severe Intellectual Impairment. It is the latter two which make the diagnosis web harder to see and conclude. That is because, when a patient is unable to talk to a doctor or therapist about how they are feeling, or what they are struggling with, the usual diagnostic procedures go out of the window. It takes a brave psychiatrist to assess a patient through profiling and observation, rather than through questions and answers. But, people with learning disabilities and limited communication need brave doctors. They also need doctors who work co-productively with parents or caregivers. Otherwise, many of the additional conditions which may be affecting them on top of their autism, go undiagnosed and untreated. Instead, these very specific symptoms requiring very specific treatment or strategies, are just considered ‘part of autism’ rather than considered as a separate diagnosis, and given the time and attention it requires.
These conditions are not ‘part of autism’, but rather, ‘commonly associated with autism’. Basically, a person with an autism diagnosis is much more likely to have certain additional conditions (compared to the rest of the population). But each associated condition may need a very different care plan from the next. When all of these care plans run alongside each other, you have a better quality of life for the individual.
This is why I advocate thorough and individualised diagnosis; if we are calling a patient complex, why are they complex? What are the individual conditions making them complex? Each one is life-affecting in some way. It’s not about accumulating labels for the sake of it, it’s about seeking the best possible support and outcome for the person.
Whilst it is common for very many individuals on the autism spectrum to experience repetitive behaviours, if these repetitive behaviours are reducing quality-of-life, then it might be worth considering whether it is Obsessive Compulsive Disorder. I fully understand that there is no magic cure for Shola’s obsessions and compulsions, but it’s about gaining thorough understanding, and devising successful strategies and care plans to protect her from harming herself with some of her repetitive behaviours which are self-injurious. It’s about safeguarding her from the wrong medication when I am no longer here, and the state is responsible for her care. I fully support using the right medication for the right diagnosis, but over-medicating with sedatives because we never got the right diagnosis, I’m not such a fan of.
OCD is often misunderstood as only being associated with an obsession over hygiene or cleanliness. This is just one version of OCD. OCD is very broad and can include any behaviour which is obsessive or compulsive in nature, including self-injuring, obsessive or intrusive thoughts, or ritualistic behaviours. These behaviours become a ‘disorder’ when they take over a person’s life and inhibit their ability to enjoy other things. Some autistic people engage in repetitive behaviour because it helps them to build predictability or routine, but in some cases a separate OCD diagnosis may be an important one to consider to ensure the person’s needs are being met and that they get the support they need.
It is quite rare for a non-verbal or learning disabled patient to be diagnosed with OCD. Some health professionals even assume it is not possible. But, in actual fact, if you pay attention to a patient’s behaviours, you can realise that they have the exact same pattern as any other patient, it just looks different from the outside. Looking closer, it’s the same struggle only via a different focus.
I hope sharing this helps people to understand the importance of health and interventions equalities for individuals with learning disabilities. Over-medication of people with Learning Disabilities is a real problem, and it often happens when nobody knows the real cause, but they have reached crisis point and need some kind of intervention. Often these interventions are heavily sedating and with side effects. It is surely better to know what you’re treating and what is appropriate for it.
