March 18 2021
Karen McGuiness is Strategy Manager at West Cheshire Autism hub and parent of three amazing children, two of whom are autistic. Here she describes autistic burnout and explains what people can do to help prevent it.
So what is Autistic Burnout?
Burnout is frequently experienced by autistic people, at cost to their mental health and quality of life. Total exhaustion, sensory overload, feeling emotionally and psychologically drained, loss of skills, and feeling unable to cope are just some of the features of autistic burnout.
In non-autistic individuals, burnout is linked with work in the human sector. In autistic individuals it is connected to living in a world that doesn’t meet their needs. It seems unjust that autistic adults and children should go through burnout, just from existing in this harsh environment.
Self-regulation and strategies to reduce burnout.
I set about researching ways to reduce the incidence of autistic burnout, as the topic of my Master’s dissertation. I created a toolkit for autistic children/young people to complete at home with a parent. The toolkit put across the idea of spoon theory using the concept of phone charge to represent emotional and social energy.
By working through the toolkit, the young person was prompted to identify activities or environments that ‘drain their phone battery’. They were also encouraged to identify activities that help replenish their energy supply. These could include taking time out from the demands of life and overwhelming sensory stimuli, embracing autistic needs, doing activities that make you feel happy, as well as self-care.
Doing more of what you love: promote autistic joy
Whereas neuro-typical individuals start the day with a full battery, autistic children and adults often start the day with depleted resources. To make matters harder, factors such as sensory overload or entering a particularly stressful space can make entire resources disappear in minutes. Taking steps towards self-care and self-regulation can be hard when you struggle to recognise and communicate how you feel. The toolkit made it easier for young people to describe their feelings, using a simple idea of mobile phones in various states of charge. Parents reported that it gave them an easy-to-use language that helped their child to explain their energy supply, as well as helping to identify the things that helped and didn’t. Parents explained that phones were much more relatable for children and young people compared to the ‘spoons’ used in spoon theory. My teenage boys definitely found mobile phones easier to relate to than spoons!
The toolkit helped the families to work through the factors involved in burnout, helping them to understand it better. Importantly though, it helped families to identify those things that increased personal resources such as passions and interests that promote joy. My research showed that once a family had better understanding of those factors, they were better able to take real steps that reduced the burnout.
It started to dawn on me though that promoting self-regulation and strategies to reduce burnout are only part of the solution.
The light bulb moment!
The light bulb moment for me occurred after reading multiple accounts from autistic adults, all of which described individuals striving to keep up with the non-autistic norms.
The message that there is ‘one way’ of being human is everywhere, even when we are unaware of it. It can be as subtle as the language we use to describe difference. This leads to autistic people battling hard every day to ‘fit in’, frequently masking their true selves at huge cost. Masking is a key factor in burnout as it drains personal resources. We cannot simply just expect people to stop using their strategy of survival. Many autistic people are not even aware when they are masking as it is so integral to their experience of life.
So what can we do? Until autistic individual feel acceptance, they will continue to mask their true selves, paying the price. We need to look at how we can improve the fit between the person and the environment whilst striving to embrace neurodiversity and difference. A brave new world where there is no one right way of being. Without this change of mindset, autistic burnout will still occur.
So what about self-regulation and strategies to reduce burnout?
Of course this is still important, but without a wider change, such strategies are a mere drop in the ocean.
Take self-care as an example… Society has thankfully come a long way in terms of promoting self-care and well-being. However, it seems to me that self-care, ‘taking time out for you’ and acceptance of self, all seem to be based on a non-autistic (or neurotypical) way of being. So self-care is ‘ok’ if it involves sitting quietly with a book, playing the piano, or going for a leisurely walk. No one would question that.
But what if self-care is stimming freely or talking passionately at length about a subject that brings me great joy? ‘Stimming’, also called self-stimulation, is a way of calming oneself, usually by repetitive movements or sounds. We all do it, you may be tapping a pencil or winding hair around your finger as you read this but if you start to tap too loudly or enlarge your arm movements, what will other people say? I may be wrong, but I think the world still has a way to go in terms of accepting self-care outside of what they think is the only way.
So what can we do to change this?
I am a firm believer that change can happen. Those of us who are non-autistic have a responsibility, as they can help make life better for autistic individuals. As a parent of autistic children, I need to help the world become a place where they can thrive, a place where their spirit isn’t broken. Outside of my parenting role though, it is simply my duty to humanity.
A personal note:
We all can be part of this movement of change in our own small way. Together I really believe that we can make a difference. I hope to adapt my toolkit into training to help increase understanding of the factors that contribute to autistic burnout, encouraging others such as school staff to make the changes required. As the strategic manager of a new autism hub in West Cheshire, I am also helping to create a social environment, where autistic adults and their families, can access services, whilst feeling valued and welcome. A small step towards that brave new world, but at least it is a start. Karen McGuinness.
Like this blog? Read ‘introducing my autistic son to fruit and veg’.
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