According to OCD-UK charity there are,'around three quarters of a million people thought to be living with severe, life impacting and debilitating Obsessive-Compulsive Disorder (OCD) here in the UK'. Many of these people may also be autistic.
Stone and Chen (2015) explain that the co-occurrence rate of OCD in autistic people 'being 3-7% is 6-14% times the rate of the general population'. It can be really hard to identify and work out the differences between OCD and autism. I'm not a psychologist or mental health professional but from my lived experience and understanding gained as a parent and SEN teacher, I know how confusing and tricky it can be to understand and get your head around. The combination of being autistic and experiencing OCD, or caring for an autistic person who is also experiencing OCD, can make finding appropriate support even more difficult.
The recent publication, Adult Autism Assessment Handbook, A neurodiversity-Affirmative Approach, by Davida Hartman, Tara O'Donnell-Killen et al. (2023) describes how, 'compulsive behaviours in OCD may be falsely attributed to the strong need for routine and sameness in autistic people....without detailed knowledge of both OCD and autism, there is a real risk of OCD being misdiagnosed in autistic people'. We firstly need autistic people themselves (or those working with or supporting autistic people) to have a clear understanding of autism and OCD and realise that although some characteristics may look similar they are very different.
What is OCD?
The NHS states; 'Obsessive compulsive disorder (OCD) is a common mental health condition where a person has obsessive thoughts and compulsive behaviours. If you have OCD, you'll usually experience frequent obsessive thoughts and compulsive behaviours.
An obsession is an unwanted and unpleasant thought, image or urge that repeatedly enters your mind, causing feelings of anxiety, disgust or unease.
A compulsion is a repetitive behaviour or mental act that you feel you need to do to temporarily relieve the unpleasant feelings brought on by the obsessive thought.'
What is Autism?
Autism is a different way of the body mind processing, understanding and responding to the world compared to non-autistic people.
Dr. Nick Walker describes autism as different, 'ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals'. The NHS currently defines autism by saying;
'Autistic people may act in a different way to other people. Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people. Autism is not a medical condition with treatments or a "cure". But some people need support to help them with certain things.' Neurodivergence
Being autistic means your brain processes, interprets and responds to the world in a way that is different to non autistic people, if you are autistic you are neurodivergent.
OCD is also a neurodivergence which means your brain works in a different way to people that do not experience OCD. If you are autistic and also experience OCD then it can be a lot more complex to get appropriate support, if you have other medical or mental health difficulties in addition it gets more complex again.
OCD is generally seen (by those who are accepting of the neurodiversity paradigm), as an acquired neurodivergence that is triggered by a traumatic event or series of life events. As means of trying to process and manage life, some people may develop what's known as obsessions and compulsions around certain events/ thoughts. These may be internal compulsions (where you may get stuck in thought cycles of intrusive thoughts), or external where you may feel the need to perform certain rituals. This may mean a person who is experiencing OCD gets stuck in cycles of having obsessional thoughts and then needing to complete internal or external compulsions (repetitive behaviours, including reassurance seeking) to stay safe or until it feels "right" before they can carry on with their day. These obsessions and compulsions may seem very irrational to other people, they may also be irrational to the person experiencing it, but that does not make it any easier to manage. OCD is cruel and very difficult to live with, yet those living with OCD may also feel they can't live without it as it provides some reassurance. OCD can severely impact daily life and executive functioning. OCD can leave people disabled and affect access to education and employment as well as impacting on the quality of people's social life. OCD-UK Charity highlight that OCD can be:
'so disabling that back in 1990 the World Health Organisation ranked Obsessive-Compulsive Disorder in the global top ten leading causes of disability in terms of loss of income and quality of life. In fact back then it went on to suggest that OCD was the fifth leading cause of burden for women in developed countries. More recently the World Health Organisation went on to state that anxiety disorders (including Obsessive-Compulsive Disorder) are the sixth largest cause of disability, and that more women than men are affected.'
Differences between OCD and Autism
Being autistic should not mean that you experience mental health difficulties. However, often due to unmet needs and all the demands from society and possible misunderstandings from other people (caused by the Double Empathy Problem - Damian Milton 2012), mental health issues are very common within the autistic community.
Crane's research (2018) in their article 'Something needs to Change', confirms the devastating statistics that highlight;
'80% of the young (autistic) people had experienced mental health problems. Not only that, these young people told us how they generally felt unhappy, depressed, worthless, under strain, unable to overcome their difficulties and lacking in confidence. Many young people felt that these problems stemmed from the pressure to act ‘normal’ in a neurotypical (non-autistic) world'.
If you add the pressures of trying to live as an autistic person and then trying to manage OCD you can see how mental health risks can quickly escalate.
OCD obsessions & compulsions = disabling (negative)
Autistic routines & rituals = enabling (positive)
Flip the Narrative
If you flip the narrative of how you view autism, and instead of seeing autism as a medical illness or deficit based condition then what may be perceived as obsessions by a neurotypical person could be seen to be an autistic person's deep special interests. Understanding autism through a neurodiversity affirming lens means what may be seen as 'restrictive interests and repetitive behaviours' are actually an autistic person regulating their mind, body and sensory system. By engaging in natural monotropic thought process you can enter a flow state of deep joy, which should be embraced not hindered or restricted by interventions. Embracing special interests and getting into a monotropic flow state is beneficial and supports good mental health as the research by Rebecca Wood (2021) confirms.
If you’re autistic and do not have OCD then what may be perceived as autistic “rituals & repetitive behaviours “ are actually helpful positive, authentic, autistic needs & ways of regulating that help you feel good and support positive mental health. Needing consistency, routines and predictability helps reduce anxiety, why would you not want this if it helps you? Disrupting routines that help autistic people is not helpful, it will not 'make' people more flexible and adaptable. It is likely to have the opposite effect and cause anxiety, stress or result in higher levels of masking which could lead to further mental health difficulties. The difference between OCD and autism is the obsessive thoughts and compulsions that consume OCD are NOT helpful, they are do not enhance life in anyway. Living with OCD is very much like living your life in survival mode, your mind is on constant high alert and engaging in compulsions, although it may feel like the compulsions help in the moment, they will not help long term. OCD obsessions and compulsions are not positive, even if you think they are trying to keep you or others safe, OCD has the potential to grow and disable life unless it is understood and the person is ready to try and make some changes and seek professional support. Where as, autistic routines and rituals are helpful and support an autistic person to manage their life more effectively.
Exposure Response Prevention Therapy (ERP)
Autism is not a mental health disorder, if you are autistic you do not need any therapy to change your autistic identity, it could be detrimental to mental health and cause more complex issues.
The difficulties autistic people experience can usually be met by changing the environment, and having compassionate people that understand autism around them to support as needed.
If you are autistic and are also experiencing OCD then some advice and support from an understanding, compassionate neurodiversity affirming professional could really help improve quality of life and give some strategies to help you manage OCD more effectively. The recent publication, Adult Autism Assessment Handbook, A neurodiversity-Affirmative Approach, by Davida Hartman, Tara O'Donnell-Killen et al. (2023) provides great advice and guidance about this and states;
'when working within a CBT framework using ERP, clinicians need to pay careful attention to building up the clients energy reserves and attending to the person's wider autistic needs as the starting point in therapy. Not doing so sets the person up to fail'.
The difficulties autistic people experience is often down to the environment not meeting need or other people not understanding autistic identity. This may cause those that care for autistic people to feel frustrated, they may see all of these needs as being “fussy or awkward”. It's important to remember it is not the autistic person that’s being fussy or awkward, it’s other people not understanding how the environment has to meet need to enable the best outcomes.
This is highlighted by Dr. Luke Beardon's "golden equation" (2017):-
Autism + Environment = Outcome
Luke Beardon (2021) argues that the environment has to be changed to accommodate autistic people, rather than altering the behaviour of autistic to be more like the behaviour of non-autistic people (neurotypical). He argues that 'autism should not and does not need to have such a strong link to anxiety, and the negative consequences of anxiety on the individual should not be inevitable'.
If ERP is being used to change routines that autistic people actually find helpful, then that is harmful and could be severely detrimental to mental health, it could reinforce masking which has been shown to lead to burnout and negatively impact mental health.
However, if those thoughts/ routines / behaviours are something that the autistic person is NOT finding helpful and it’s negatively impacting on their quality of life then therapy may be really useful. Getting support for OCD from a professional that understands autism and OCD is important. If ERP is delivered in a neurodiversity affirming way that supports an autistic person's authentic identity and autistic needs then it could be really helpful, it could lead to a less disabled life, richer opportunities and a better quality of life and mental health.
Balancing Autism and OCD
OCD feeds on anxiety and constantly seeks reassurance. The more you listen to OCD, "give in" or "feed it", the more it consumed you. It can be a fine balance to try and work out when to push through gentle neurodiversity affirming ERP for OCD and when to accept and manage in other ways so you can function. Despite OCD being really common amongst autistic people, nearly all research I've come across is based on the needs of neurotypical people. The Nice Guidelines recommend that autistic people who need therapy for a mental health problem should receive therapy that has been adapted to take account of autism. It's important to recognise that for any therapy to be effective the person has to be in the right place and ready to work on themselves. Above all I believe the most important part of therapy (teaching or parenting) is that positive connection and feeling of being understood, listened to and valued.
ERP needs to be delivered on an individual's own terms, when they feel ready, respecting their autistic identity to provide the best ways forward to live the life and enable the life they want and deserve. This again is highlighted in the recent publication by Hartman et. al. (2023) as they highlight the importance of therapists needing to 'support the person to attend to and meet their sensory needs, manage their energy reserves so that they are in the best possible place to tackle ERP tasks....clinicians need to have both expert knowledge of OCD AND Autistic experience'. If you are autistic, you cannot separate your autism away from your OCD, it is part of your identity, being autistic is how you think and respond. As Hartman et al (2023) state there is a systematic lack of understanding of the autistic experience and how best to support autistic people.
Summary based on personal lived experience:-
As an autistic parent and through my work as a teacher within SEN settings I have personally found that autistic routines are helpful and can support an autistic person maintain good mental health. Autistic routines provide predictability, consistency, reassurance all of which lower anxiety and help the sensory system, mind and body stay more regulated and balanced.
OCD rituals, compulsions and repetitive behaviours or intrusive thoughts are NOT helpful and can have a severe and serious detrimental effect on mental health, education / work and quality of life. OCD increases anxiety, it can be seriously disabling and impact other mental health conditions including depression.
If ERP therapy is delivered in a neurodiversity affirming way to support autistic people with OCD it could be really beneficial and enable a much better quality of life. We need so much more research in this area to provide the compassionate, support autistic people need that are struggling with OCD to help them live the life they deserve.
Signposting and further support:
Thriving Autistic
**Article written from my lived experience as a parent and teacher. Knowledge gained through various personal research and neurodivergent communities.Autistic Realms is a space for parent support and teacher guidance. I am not a medical professional or therapist.**