Autism is a difference of neurotype and many autistic people refer to themselves as being neurodivergent. Neurodivergent people process, interpret and respond to the world in a way that is different to the neuromajority /neurotypical person. Obsessive-compulsive disorder (OCD) is characterized by recurrent, unwanted thoughts (obsessions) or repetitive behaviors (compulsions). Some individuals can experience both obsessions and compulsions and it can severely impact their lives and disable them. For some people their lives are impacted further by them being multiply neurodivergent and also experiencing difficulties with alexithymia and interoception alongside OCD and being autistic. This article briefly looks at the complex tangle of being autistic and living with OCD, alexithymia and interoception awareness difficulties. Some people may not be autistic yet still experience OCD, however, many people are multiply neurodivergent (ie. they may be autistic and experience many other co-occurring conditions). Edibel Quintero (2023) in Health Reporter, writes that 'individuals with OCD process their thoughts and behave differently than what is considered neurotypical....people with OCD have unusual activity levels in specific regions of their brains, as their brains show more activity in thinking, judgment, and motor functions. The neurodiversity movement aims to change people’s perceptions of OCD. It rejects the notion of OCD as a disorder, instead viewing it as a neurological difference with a distinctive way of thinking and experiencing the world.' This is not to undermine the severity and disabling impact OCD can have but rather it is a way of flipping the narrative and accepting differences.
Many autistic people have sensory processing difficulties and may struggle to understand and interpret their internal body feelings (interoception) as well as experiencing difficulties understanding and responding to emotions (alexithymia). This can lead to further anxiety and overtime without support can lead to mental health difficulties. Kelly Mahler highlights that, 'Interoception has a huge influence on many areas of our lives like self-regulation, mental health and social connection'.
Price et al (2018) researched Interoceptive Awareness Skills for Emotion Regulation: Theory and Approach of Mindful Awareness in Body-Oriented Therapy (MABT). They confirmed the importance of understanding this sense for your whole self to be regulated. 'Interoception is the perception of sensations from inside the body and includes the perception of physical sensations related to internal organs function such as heart beat, respiration, satiety, as well as the autonomic nervous system activity related to emotions.'
Interoceptive awareness is your body's ability to interpret if you're hot, cold, hungry, thirsty or in pain. If you can't work out how you feel you won't be able to regulate your sensory system and consequently your emotions will also be dysregulated. In a dysregulated state autistic people are more likely to experience meltdowns and shutdowns as their capacity to manage will be outweighed by all the other demands of being in state of confusion due to difficulties with interoception awareness and alexithymia. It's all linked, it's all connected, not understanding this or not having ways to support managing it can seriously impact mental health and the ability to have a good quality of life. The combination of being multiply neurodivergent is complex, (autistic & experiencing OCD, alexithymia and having interoception processing difficulties).
Statistics The NICE guidelines refer to, ‘Quality of life and disability in patients with obsessive-compulsive disorder’ (J. Bobes, 2001) which reports that, 'OCD ranks tenth in the World Bank’s and WHO’s (World Health Organisation) ten leading causes of disability and, in the case of women aged 15–44 years, OCD occupies the fifth position'. This highlights the severity of OCD and the impact it can have on a person's quality of life. A study in 2020 showed that up to 37% of autistic young people also experienced OCD (S. Meirer al 2020), this highlights how common this. It also highlights the need to consider this when working with and supporting young autistic people and adults.
According to the National Autistic Society and also the British Medical Association, 'More than one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK'. More people are now identifying and being diagnosed autistic than ever before, waiting lists are growing year by year as more people are showing signs that they are struggling with their mental health due to unmet needs caused by the way society is set up and battling against constant barriers. It is not autism that is disabling, it is the environment people are struggling in that often causes problems and impacts people and this can further exacerbate OCD.
Importance of language
To understand anything, it is important to have the right vocabulary, knowing and being able to give names to the complicated tangle of autism, OCD, alexithymia and interoception can help enormously. If you don't know what these words mean then you can't get the right support, you are left with a messy web of mixed-up bodily sensations and unnamed emotions. This confusion can lead to further anxiety, panic attacks, depression, and mental health issues. It can severely impact upon a person's quality of life and their relationships; for a young person it can affect their education and for adults it can affect their career and employment.
Individuals and Relationships
Autism can present in many ways, as the phrase goes, 'if you have met one autistic person you have met one autistic person'. Equally if you have met one person who is not autistic you have met one person who is not autistic everyone is an individual. Everyone has their own past experiences and trauma that is layered within them, affecting how they respond and interact with the world. Therefore, one approach will not suit everyone, people need positive relationships to develop understanding and create connections so they can work together to support their specific needs.
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.
Combination of Alexithymia and Interoception
If you have difficulties with alexithymia it means you may not be able to identify your emotions. If you also have interoception difficulties and cannot understand how your body is feeling, then you also won't be able to identify how to respond and manage it. It is essential for people (and those that support them) to understand their body sensations and responses. People need to understand their own emotions and those of others in order to be more regulated, lessen anxiety and the risk of escalating mental health difficulties.
Anxiety & OCD Cycle
To put this into context; imagine you are sat watching TV and notice a sensation in your stomach. You may feel a physical rumbling sensation and wonder what is happening. It could signify a number of issues; hunger, needing the toilet, start of a sickness bug or it could be anxiety. If due to difficulties with interoception awareness you are unable to work out what that sensation is it can lead to further anxiety and more intense bodily responses and sensations. Anxiety can lead to obsessive and compulsive routines (internal, as intrusive thoughts or/ and external, as checking and ritual behaviours); the OCD cycle has then started and it can be very hard to break.
What could this be like?
If you are experiencing sensations in your stomach, you may start checking things to help you feel 'right' and reassured. You may check your body for other signs of illness, check packaging and food expiry dates to try and eliminate food poisoning and to reassure yourself, you may need to pace or complete rituals a certain number of times as specific numbers have felt like they have helped in the past and now you don't want to risk not doing that routine either. The possibilities are endless and the time and energy this takes up can be infinite, including the impact on family and relationships of those around you, who may be trying to support but don't know how.
Without an understanding of what is happening inside your body (interoceptive awareness), you are left with strange sensations in your stomach and rising anxiety. If this is frequent (it could be several times an hour, several times a day) and the situation is taking up significant amounts of time then it is likely to exacerbate more mental health issues. Being stuck in cycles of OCD and anxiety, a state of confusion with alexithymia and interoceptive awareness difficulties can lead to even more serious mental health issues, deeper anxiety and deeper depression, it can be completely disabling.
Therapy
Katie Munday (Autistic and Living the Dream) states, 'My OCD is very unlikely to ‘leave me’ at any point. It is intertwined with my trauma responses'. We need to find ways to live with OCD, make life a bit more manageable. There are various routes for therapy such as DBT (Dialectical Behaviour Therapy skills) and ERP (Exposure Response Prevention) and others that are best supported by an understanding neurodivergent affirming therapist that understands the complexities of being autistic and OCD. 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. 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;
'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 (for OCD). Not doing so sets the person up to fail'. There are long waiting lists for therapy under the NHS but there are things we can do as individuals if you are struggling personally or as parents/ carers to support loved ones or those you are working with. The charities and organisations listed below may be able to signpost and give further advice.
Language
Firstly, it helps to understand the terms alexithymia and interoception. If you have the vocabulary to describe the situation it is a starting point. When you are feeling anxious it helps to name what is going on. Naming the feeling can begin to reduce anxiety. For example, if you have a sensation in your stomach then you will know because of alexithymia and your difficulties with interoception that it is going to be difficult to understand this feeling but you can now say why!
Having the right vocabulary can help explain panic attacks, meltdowns or shutdowns and may even lessen help lessen the severity and frequency as anxiety will be a bit lower. Sharing this vocabulary with friends, family and those around you can help everyone.
Body Scans Body scans can be an enormous help for those with interoception difficulties. Kelly Mahler has lots of amazing work around this which can be used with young people and adults. It can help to work your way through your body to try and identify the sensations (e.g., if your hands are clenched, flappy or relaxed, if your chest feels tight or heart is racing fast or beating slowly). It takes time and practise to learn to identify how your body is responding in different situations and the triggers and what it all means. It may help to have checklists to help you (or those you are supporting) to go through this. For children you could use pictures to support understanding remember to practise when you are not in crisis or experiencing high anxiety so you can then use the tools you've learnt or support others when needed to engage with a body scan activity.
If you can identify your internal body sensations, then you can begin the process of starting to identify your emotions. This will take time and practise but over time the aim would be for you to learn (or help the person your are supporting to learn) how to interpret different body sensations and to identify the signs your body has when it is anxious compared to when it is hungry or ill or happy and calm. Understanding this can support mental health and also consequently help people manage OCD more effectively for a better quality of life.
A starting point for a better quality of life
Being autistic whilst experiencing OCD and co-occurring difficulties with alexithymia and interoception can be very challenging. Having the language to describe and understand yourself or help another person understand themselves a bit more can be helpful. It is a starting point to enable you or the person you are supporting to manage more effectively and have a better quality of life.
Sign Posting & Further Support
If you or some you support are experiencing difficulties or are concerned about OCD or mental health please seek professional advice.
OCD-UK | A national OCD charity, run by, and for people with lived experience of OCD (ocduk.org) OCD Action - UK's largest OCD Charity
International OCD Foundation | Home (iocdf.org)
National Autistic Society (autism.org.uk)
Kelly Mahler | Interoception | Interoception Activities (kelly-mahler.com)
Autistic Mental Health – Improving access to mental health support for autistic people – by autistic people.
Autistic and Living the Dream – Stories from a queer Autistic researcher (autisticltd.co.uk)
The Neurodivergent Friendly Workbook of DBT Skills: Amazon.co.uk: Wise, Sonny Jane: 9798799480684: (2022)
Adult Autism Assessment Handbook, A neurodiversity-Affirmative Approach, by Davida Hartman, Tara O'Donnell-Killen et al. (2023)
**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.**