Understanding Autism and Anxiety
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Do you understand
your anxiety?
People need to DO better anxiety
People need to BE better anxiety
Other anxiety AKA 'Shrek' anxiety
Led by:
Andy Smith: Creative Director, Spectrum Gaming, in partnership with over 30 autistic young people from the Spectrum Gaming community.
Special thanks to:
Dr Anna Dodd: Clinical Psychologist/ASC Clinical Lead, Greater Manchester Mental Health NHS Foundation Trust.
Jane Forrest: Autism Support Coordinator, Trafford Council.
Claire Lowen: Changemaker, Spectrum Gaming.
Nanny Aut: Autistic Advocate: Autistic Village, Inside Aut.
Kirstie McStay: Autistic adult/ Under 13 Server Manager, Spectrum Gaming.
Jude Esau: Autistic adult and Children & Families Manager, Autism Inclusion Matters, Isle of Wight.
Jim Johnson: Parent of an autistic young person.
Cathy Williams: Parent of autsitic children.
Anxiety is often seen as a negative that the individual must overcome, but anxiety is often a healthy protective mechanism that enables us to identify and avoid harm. To ignore it means we ignore key signals that manage our wellbeing. Sometimes, there are very real causes for the anxiety that need to be addressed or removed for the anxiety to stop.
Example: You are struggling to eat dinner in the school hall
Advice which is often given:
"You must get used to sitting in the dinner hall so, we will make you sit in there for 5 minutes, then 10 minutes, then increase the length each time, until you aren't anxious about it anymore."
But:
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If it is too loud, the dinner hall will always be difficult when it is loud.
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If there are too many strong smells, it will always be difficult when there are strong smells.
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This approach puts the blame on the young person when it is the dinner hall that is the problem for the young person.
Instead:
Can you work together to understand why it is difficult, then work out the right approach? This often involves environmental changes, or aids to help manage the sensory input from the environment:
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If it is too loud, can you wear ear defenders or headphones?
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If it is too smelly, can you go at a less busy time of the day?
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Do you have to go to the dinner hall at all? Adults do not have dinner halls!
Sometimes, our brain gets it wrong and sees something as a threat, when it isn’t; this is irrational anxiety, although if you start to dig deeper you may well find a genuine cause underneath that led to this. For instance, spiders are harmless in the UK, but can be extremely venomous in other parts of the world. Our primal brain may not be able to differentiate between UK and let’s say, Australian spiders, so it develops a phobia about spiders.
There are many different approaches for challenging anxiety, but it is important to recognise that a different approach is needed, depending on the type of anxiety:
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If anxiety is a result of real difficulties you experience, such as a space being too loud or too bright, then repeated exposure (such as the ‘small steps’ approach, where you go into the space a bit at a time) can only ever cause harm as the space is not suited to your needs. Each exposure increases the damage and this can have quite a huge negative long-term impact. The length of time you spend trying to get used to the environment (e.g. a further 10 minutes) may also increase the likelihood of sensory overload, if this is something that you experience.
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If anxiety is irrational (your brain tells you something is threatening when it isn’t), for example a phobia, taking small steps to challenge your anxiety can be helpful. But you still need environmental adaptations put into place, because if your anxiety is too high, small steps will feel much bigger. These steps also need to be under the control of the person experiencing the anxiety. Being pushed by someone else is likely to deepen the anxiety, not reduce it.
Sometimes, a real difficulty makes you struggle so much that you also develop irrational anxieties too. This then means that you need environmental changes (for example, ear defenders or going at a quieter time), but then if you are still struggling to attend a space and it is something you want to do (e.g. wanting to sit in the dinner hall with your friends), you can try out some small steps a little bit at a time to prove there is nothing to be afraid of (if your needs are being met in the space).
Sometimes what can look like irrational anxiety can have a very real threat behind it. For instance, an exam phobia can look irrational on the surface, but if you recognise that all someone’s work and knowledge comes down to two hours in an environment and setting in which they struggle massively, and that they have been told repeatedly that these results determine your whole future, then you realise that is a real threat to that person, not an irrational one.
Autistic young people struggle a lot when people challenge their anxiety in the wrong way, so we have worked together to create a four step process to challenge anxiety, which works for all anxieties. If a young person is struggling with anxiety, this process should be followed one step at a time to reduce the chance of it having a negative impact on their life.
The focus of this guide is autism and anxiety, but the step by step approach works for anything, as long as you have enough understanding of the individual and their needs, and know how to effectively work in partnership with them.
