Updated: Jan 30
The National Autistic Society School report 2021 confirmed, 'There are over 160,000 autistic pupils in schools across England. Over 70% are in mainstream school, with the rest in specialist education, home educated or out of education altogether'. This figure is likely to be much higher as there are many more who are either on waiting lists or not in the privileged position to get a diagnosis.
OCD is a common co-occurring neurodivergence that many people experience alongside being autistic and it is important that teachers and those working with young people understand this so they can meet needs. Autism is a difference of neurotype, and many autistic people refer to themselves as being neurodivergent, a move away from the pathology paradigm as discussed by Dr. Nick Walker (2021).
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/and repetitive behaviours (compulsions). OCD can severely impact people's 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 that autistic students experience who are living with OCD, alexithymia and interoceptive awareness difficulties. I will explore how this presents and impacts young people and ways teachers can support their students through education. 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'. 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 further how common this is and the need for considerations when working with and supporting young autistic people.
Some students may not be autistic yet still experience OCD, however, many are multiply neurodivergent (i.e.they may be autistic and experience many other co-occurring conditions such as ADHD or Dyslexia). Autism and OCD may present similar but they are very different. For example the routines that may support autistic students could be disabling if it is led by OCD, led through fear and anxiety as opposed to being helpful. If your student experiences OCD thought patterns some routines which may look helpful may be part of their compulsions and be detrimental to their mental health. As an example, it could be helpful for an autistic student to have a morning routine in class with you where by they go through their timetable and then lay out all their books and equipment in a set order on their desk before they begin their work. This may help them feel less anxious and in control. If that child also has an obsession about needing to know the exact timetable and is constantly asking reassuring questions and then spends the entire lesson re-arranging their pens and can not work until it feels 'right' then it is not helpful. These two routines may look the same, they are both genuine needs due to a neurodivergent way of processing however, the reasons behind it are different. OCD impacts on a person's ability to learn and function, obsessions and compulsions are not driven by want, they are driven by a need that the person often does not want yet feels compelled to do.
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. Please refer to my article on the need for schools to adopt a neurodiversity affirming and neurodivergent friendly school framework for further information Education Crisis - Neurodiversity Affirming Teacher Training Needed (autisticrealms.com).
A neurodiversity affirming and neurodivergent friendly school approach needs to be implemented in all schools. Having a neurodivergent friendly school approach will mean that the baseline level of anxiety for autistic students will already be lower on a daily basis, they will be able to learn more effectively, there will be more opportunity to thrive rather than living in survival mode. For those that are multiply neurodivergent or have additional needs they will have more capacity to manage any additional stress and anxiety that occurs. It will also give teachers more capacity to meet other students needs as the neurodivergent friendly baseline of the school would have enabled everyone's needs to be met, the environment will be right.
The environment is key as Luke Beardon (2017) states;
'Autism + environment = outcome; environment could include: autistic self (e.g. understanding of self); others in that environment; the sensory environment; society (broken down into: values, attitudes, knowledge); policies; & the law'.
Kelly Mahler highlights that, 'Interoception has a huge influence on many areas of our lives like self-regulation, mental health and social connection'. 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 which can affect a student’s ability to focus, achieve their academic potential and can also affect attendance. If your student is struggling it is important to talk to them, talk to their families and seek professional advice from an occupational therapist who may be able to complete a sensory profile assessment. This will highlight areas your student is struggling with and can support fine tuning of strategies, provision and activities that may help your student to regulate. A psychologist may be able to provide further support strategies, however as teachers we can not just sit back and wait if our students are struggling we need to support them in what ever capacity we can within our role as teacher. It is important to communicate with parents / carers and all work together.
Interoceptive awareness is your body's ability to interpret if you're hot, cold, hungry, thirsty or in pain. If students are unable to work out how they feel they won't be able to regulate their sensory systems and consequently their emotions will also be dysregulated. This will affect their ability to focus and concentrate on their work and learn effectively. It can contribute to a breakdown in their engagement with their peers, teachers and affect progress outcomes and eventually could lead to difficulties with school attendance and autistic burnout as highlighted in my article about Supporting Children through Autistic Burnout (Parent/Carer Guide) (autisticrealms.com).
In a dysregulated state autistic students 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. Everything is connected, teachers and staff working with students need to understand this to enable them to effectively provide support. Teachers, parents, multiagency professionals and the student need to work collaboratively. There is not a one size fits all strategy, it will depend on the student's specific needs / trauma and OCD difficulties.
Importance of language It is important students learn the right neurodiversity affirming language to be able to communicate their needs. This should be taught whole school and embedded into the culture of the school. A great way to start this is to look at the fabulous Learning about Neurodiversity at School (LEANS) project.Another great resource is Spectrum Gaming's Barriers to Education guide which has some great ideas and resources and Neurobears also has a wonderful programme for younger children and their supporting adults. Kerry Murphy has produced a fabulous Neurodiversity & Anti-Ableism Reflection Toolkit to support setting to reflect on their practise and affirm all children. If neither teacher or student understand and know the right vocabulary to describe the confused feelings associated with alexithymia and interoceptive awareness then it can lead to further frustration and anxiety. This is not about expecting teachers to take over the role of psychologists or OT's or add more to their work load, however we have a duty to educate ourselves so we can support our students. This is even more important with the rising numbers of autistic students and students with additional needs in mainstream school (children with EHCP / Statement of SEN have increased 9.2% in the past year rising to 355, 566 (2021/2022) and the numbers of those with SEN support plans have increased 4.3% to 1, 129, 843 (2021/22). The percentage of pupils with SEN but no EHC plan (SEN support) has increased to 12.6%, this is a continued trend since 2016 (Academic Year 2021/22, Special educational needs in England Gov.UK) Teachers need to learn the neurodiversity affirming language that autistic students need in order to connect with them. If teachers don't know what these words mean then they can't advocate to get the right support or signpost families to get the support they need. We need to support students so they are not feeling alone and misunderstood with a messy web of mixed-up bodily sensations and unnamed emotions, we need to support students to feel empowered and validated. Remaining in this state of confusion can lead to further anxiety, panic attacks, depression, and mental health issues. It can severely impact upon their quality of life, their relationships and ability to access education and attend school and negatively impact their home and social life too.
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.
What could this be like for a student in your class?
To put this into context; imagine your student (autistic and experiences difficulties with alexithymia, interoception and OCD) is sat working in a maths lesson when they notice a physical rumbling sensation in their stomach they may 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 they are unable to work out what that sensation is it can lead to further anxiety and more intense bodily responses and sensations. This anxiety can lead those with OCD to obsessive and compulsive routines (internal, as intrusive thoughts or/ and external as ritual behaviours); the OCD cycle has then started and it can be very hard to break. For a student in class this could mean that they may not be able to concentrate on their work and they may be too anxious to use any 'time-out access pass' they have. They may not want to disclose to the rest of the class or their teacher what is going on so they may either sit passively and quietly, unable to work or they could respond in other ways and feel unable to sit and are seen to be 'disruptive' or display 'challenging behaviour'. The possibilities are endless and the time and energy this takes up can be infinite, including the impact on family and relationships. Either response is valid, the root cause is the same and these students need caring, understanding staff that can support them and work with them to reduce triggers and provide opportunities for them to be able to re-regulate when needed in ways that best suit them.
Without an understanding of what is happening inside their body (interoceptive awareness), your student will be left with strange sensations in their stomach and rising anxiety and escalating dysregulation. 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. It will affect academic outcomes, relationships and if the environment and provision is not meeting needs it could eventually affect attendance and a spiral of further complications and other consequences could follow. As teachers we need to work with students and their families to try and ensure students do not end up going down this path.
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 support students to live with OCD and make life a bit more manageable. If a student is experiencing difficulties you can refer them to CAMHs and talk to their family. 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. There are long waiting lists for therapy under the NHS but there are simple things we can do as teachers to support students a bit more.
What can help in school?
Adopting a neurodivergent friendly framework will be an enormous help and support for everyone (regardless of Neurodivergency), if the environment is right then your student's baseline anxiety will be lower. They will be more regulated, there will be more space in their emotional and sensory bucket to manage tasks before they reach the point where they feel flooded and are unable to manage and experience shutdowns / meltdowns or further masking in school which then has a greater impact on their home and social life.
Firstly, it helps to understand the terms alexithymia and interoception. If you and your students have the vocabulary to describe the situation it is a starting point. When your students feel anxious, it is helpful to have a key adult they can talk to and they are comfortable with, it helps to identify and name what is going on. Naming the feeling can begin to reduce anxiety. For example, if they are complaining they 'don't feel well' and then describe a feeling in their stomach then you can talk about alexithymia and their difficulties with interoception and that it is going to be difficult to understand this feeling but they can now say why it is a confusing feeling (after ruling out medical and actual illness).
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 their friends, family and adopting a neurodiversity affirming approach in school will help everyone be more accepting and understanding.
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. Ideally this needs to be done through an experienced OT however there are strategies you can use with your students to help them work out and identify their body sensations (e.g., talk about what it means if their hands are clenched, flappy or relaxed, if their 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 support your student, some may benefit from using pictures to support understanding and processing. Remember to share strategies and ideas with family too. It is important students have opportunity to practise body scans and sensory regulation activities when they are not in crisis or experiencing high anxiety so they can then use the tools they've learnt when needed. Skills need to be generalised and students need to be able to recognise when to use them in a variety of contexts.
If students can identify their internal body sensations, then they can begin the process of starting to identify their emotions. This will take time and practise but over time the aim would be for you to support them to learn how to interpret different body sensations and to identify the signs their 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. It will enable them to be able to manage their work and time in school more effectively and have the right strategies and provision in place to support them when needed, alongside a positive relationship with an understanding adult.
A starting point for a better quality of life
Being young and autistic whilst experiencing OCD and co-occurring difficulties with alexithymia and interoception can be particularly challenging. We need all schools to adopt a neurodiversity affirming, trauma informed and neurodivergent friendly approach. We need to support students to learn the language to describe and understand themselves so they feel validated and empowered.
Sign Posting & Further Support
If a student you are working with is experiencing difficulties or you are concerned about OCD or mental health please seek professional advice. It is essential students / parents / carers / teachers and multiagency staff all work together and have a collaborative approach to meet student's needs. OCD Resources and Support
Autism and Neurodivergent Resources and Support
Kerry Murphy -The Neurodiversity & Anti-Ableism Reflection Tool - Audit your inclusion with this anti-ableism tool | Famly
Spectrum Gaming - Talking about autism | Autism Barriers to Education
Dr. Nick Walker - AUTISM & THE PATHOLOGY PARADIGM • NEUROQUEER
Parent Resources and Support
**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.**