Past World Autism Awareness weeks have been geared at helping neurotypicals understand what our lives are like, but autistic people don’t receive much understanding or compassion in return. What I really hope for in these periods of ‘awareness’, are for autistic adults to find some comfort and perhaps learn how to make sense of some aspects of their autistic identity.
Content warning: this article contains content about eating disorders
This may come across strangely to neurotypical readers and, more generally, neurotypicals who are “aware of autism”, but we autistics don’t really enjoy World Autism Awareness Month...or Week...or Day. Despite the often unrewarded efforts of the community to gently educate and engage with others, misinformation that has been long debunked continues to be spread. Deciding to challenge people who peddle misinformation can be extremely draining and, quite frankly, not worth it most of the time. This misinformation is often not only built on outdated notions of what autism is, but tends to be written for parents hoping to ‘deal’ with or ‘manage’ autistic children — never for autistic adults. Last year my mum would insist that I didn’t watch any segments in the news where ‘experts’ were interviewed because it would only anger me. On one occasion where viewers were invited to tweet in questions, I asked a psychologist (who until then only spoke about children), to consider how autistic adults might be affected by the pandemic and its effects on our routines — and she flatly said that we should consult our specialists, as though we could all afford them. As if they were even available to us. So much for awareness.
For that reason, I want to write for us. I’m obviously happy if non-autistic parents, professionals, and any other sort of person outside the autistic community can take something away from my experiences to support the autistic people in their lives — but what I really hope for is for autistic adults to find some comfort and perhaps learn how to make sense of some aspects of their autistic identity.
I have brought up the themes of exhaustion and inability to access support because I wish I had learnt about autistic burnout, not when I identified it, but at its very beginning. It’s not a medical phenomenon as such, but it’s a kind of extreme exhaustion that has been documented widely by autistic advocates. Whether it’s long or short term, it tends to be caused by the immense stress that we go through in order to mask or process excessive stressful sensory and communicational input in our day-to-day lives. In other words, autistic burnout is when we reach the absolute limit of our capacity to cope with the demands of a world that is not understanding of our autistic needs. The resulting effect has been harshly referred to as ‘regression’, claiming that we enter a sort of childlike state in which we are less able to ‘function’. I don’t see it in terms of ‘functioning’: in addition to the many reasons why functioning labels should be obsolete by now, this description wrongly places an emphasis on what we can ‘contribute to society’ when the focus should be on our individual health and wellbeing.
The way I see it, we take refuge in interests or strategies that we know we can manage with absolute minimum energy; we may stim more freely because it feels right or helps us communicate or recharge, and we may stick to only the most familiar of special interests because everything else takes a degree of effort we currently cannot make. For example, I only watch specific episodes of JoJo, and it will be especially urgent for me to be in dark, odourless environments, which are hopefully also cold enough to wear fleecy clothes. Our executive functions deteriorate because both mentally and physically it becomes impossible to keep track of what we need to do: we may struggle with basic self-care, chores, bills, academic work, and other aspects of life that demand flexible and dynamic thinking. It’s no wonder then that we become ‘withdrawn from society’: if interacting with people is challenging enough on a good day, then how are we meant to do it when that very time we spend masking around people has contributed to our burnout? It is important however that we have a solid support network (or even just one supportive person!) that can provide practical or emotional support.
All of these strategies to deal with burnout kind of work in theory because, most of the time, we can’t afford to stop to take care of ourselves or to be taken care of. We have to continue working, or going to university or school, which means having to withstand the same painful noises or complicated social interactions day in and day out. The impact of these stressors can be so much more devastating when someone doesn’t know they’re autistic and can’t identify those stressors. There came a point in school, where I accepted that I would never learn anything, so I’d just pretend to be doing work until the last bell of the day rang; meanwhile, I’d be immersed in my daydreams or focusing on a stim, like watching the sea from our classroom windows or sneakily listening to music. At university, I would fall asleep with the lights on, too tired to even think, and I would tell myself “I’ll just do this tomorrow” until I suddenly found myself working on an essay the day before the deadline. I wasn’t lazy — in fact, I think the opposite, because I would read and make notes through the unrelenting exhaustion — but from an outsider perspective, I might have looked like I wasn’t trying hard enough. Burnout has a tremendous impact on our learning, just like ADHD or dyslexia does, and yet I don’t hear enough about it. The fact that autistic burnout is so unrecognised also makes it difficult to ask for help or extensions—it’s easier to say you’ve got depression even when you aren’t actually depressed.
The first time I recognised I was experiencing autistic burnout was in August 2019. I was home after a tumultuous few months of unemployment, discouragement from doing a PhD, and living in a place that was a complete sensory nightmare — but on top of that, I was also at the lowest point of my eating disorder, having had a terrible therapist at first and then done day treatment at an ED ward that I had to cut short precisely because they wouldn’t accommodate my autistic needs. When we think of autistic burnout, we also need to think of the contexts that made those events or periods especially stressful — months or even years of difficulties that we couldn’t take our time with. For me, it was the deaths of three of my pets and their impact on my mental health, all the while I worked my way through two highly intense degrees — and this doesn’t even include unquantifiable changes and daily sensory distress.
While I was home, I was finding it impossible to do things that typically relax me, even though I had no responsibilities other than my share of chores. It was hugely frustrating and made me feel as though my brain wasn’t working or was stuffed with cotton balls. Fortunately, being home also meant that I never needed to put on a mask, and I think that allowed me to finally start decompressing. I didn’t have to talk to anyone other than my mum, with whom I’m free to communicate with little noises or WhatsApp stickers. From then on — once I went back to living on my own and became able to do some paid work in teaching others about autism — I reassessed my priorities and needs, and made realistic aims for the future.
I told my potential PhD supervisor that I didn’t feel able to do a PhD anymore, and actually felt really relieved to realise that I loved doing autistic advocacy much more than I would’ve enjoyed the world of academia. I went to life-drawing lessons every week for some gentle stimulation, and because drawing helps me relax even when I’m unhappy with the result. A few months later, corona took over the world, and I thought my burnout recovery would be undermined by all the changes we all dealt with — but actually, being home and not seeing anybody except my mum and cats finally gave me the extended sensory and social break that I needed. Even better, I was able to access services online that I was struggling to find offline: I finally found a therapist and psychiatrist that accepted and honoured my autism through my recovery process. Having to do everything online even helped me strengthen my friendships—as a teenager I never expected to have friends, but now I had dozens to play Animal Crossing with! And since my best friend was working from home, I could talk to her almost all the time despite the huge timezone difference!
Since then, so many things have fallen into place, and I don’t consider myself to be burnt out anymore. However, I have had to accept that I’ll never ‘function’ like a neurotypical person, which can be really hard given society’s obsession with productivity. Maybe I did before, but I’ve seen what a huge sacrifice it was and I’m not willing to put my autistic wellbeing at risk anymore. Going forward, I will have to establish strict resting breaks in between responsibilities, but at the same time allow myself some flexibility in order to preempt another big burnout.
There is so much that has been written in past World Autism Awareness Weeks that is geared at helping neurotypicals understand what our lives are like, but autistic people don’t receive much understanding or compassion in return. Having come out of burnout, I feel like I have a duty to help others through their own. I hope that with this, you may feel a little less misunderstood, and a little more hopeful that burnout doesn’t last forever. ❤️