For the past several weeks I’ve been struggling with “autistic burnout.”
The National Autistic society defines Autistic burnout as “a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate support. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus,” (Source).
This can be, but is usually not, associated with work burnout. In fact, in my case, my work has nothing to do with my burnout at all. It’s everything else.
All of the Things
When I wake up in the morning I think of everything that has to be done in order to “get to work.” Mind you, I work from home, but I still have to:
Decide what to wear
Brush my teeth
Make the bed
And so on,
until I can get to sitting at my desk with my laptop. All of this, while considered normal and easy tasks for neurotypicals, can be challenging for neurodivergents and autistics like myself. This is because these daily tasks require more attention and focus for us and are only exacerbated when overwhelmed or tired.
When I’m feeling good the daily routine actually gives me energy, but when I’m feeling low, it takes that much more effort to complete. For example, the other day I managed to get up and decided to change my bed sheets and put them in the wash. By the time I completed this and made my bed once again, I promptly pulled the covers back and curled up for a nap. That one, seemingly easy, task had used up my energy.
Causes of Burnout
The National Autistic Society has also compiled a list of causes of burnout. These include:
Masking their autistic traits, for example by suppressing autistic behaviours, pretending to be non-autistic, or working very hard to act in a non-autistic way.
Difficult or unreachable expectations from family, school, work, or society in general.
Stress from living in a world not set up to accommodate autistic people, for example managing the stress of having to be in noisy environments.
Life-changes and transitions that are stressful for anyone, for example transitioning from school to work, experiencing a mental health crisis, or the death of someone close.
[People] also described barriers to getting support or relief from the stress.
Gaslighting or dismissal when attempting to describe the autistic burnout, for example being told that everyone has these experiences, that they just need to try harder, or that they are making it up.
Poor boundaries or self-advocacy with respect to saying no, taking a break, or asking for help. This may be due to trauma, fear, lack of assistance in learning how, and a history of negative responses from others when they tried.
Inability to take a break from stress that is so pervasive (“How do you take a break from life?”).
Insufficient external resources and supports, for example inadequate disability services, lack of useful social support.
My burnout, I think, can be attributed to 1) needing new glasses. I work primarily on my laptop and when I’m not looking at a screen, I’m reading or writing in a notebook. This puts a lot of strain on my eyes and I didn’t realize it for the longest time.
Secondly, I think it has a lot to do with recent stressors. On one hand I’m still working minimal hours and have yet to secure more clients or a different job. On the other hand my roommates and I ran into some issues with the utilities at our house and since I was the one who initially set it all up when we moved I felt responsible for making the appropriate calls and fixing the issue.
Now, I am better at making phone calls than I was five years ago, but I still loathe them and if there is a way around making a call I will take it. Thus, like my glasses, I failed to recognize how overwhelmed this issue and these phone calls made me, until I was struggling to get out of bed in the morning.
Of course, there are other factors such as sensory stimuli that I can’t always control like my roommates being loud or the sun being too bright that day. Honestly, there isn’t always a reason for this, sometimes I just wake up and I’m extra sensitive to sensory stimuli. Things become too loud, too bright, smells are too strong, clothing becomes uncomfortable. I default to pajamas and safe foods in the quiet, controlled environment of my bedroom.
I do not have the answers for recovery. I’m still working on it myself. But I do have some pointers that have helped me in the past and are starting to help me again now.
Firstly, get plenty of rest. It takes everything in me to let myself take a break and rest sometimes. I’m constantly faced with the “I should be doing X or Y, not napping,” but it is the most important thing you can do for yourself. Autistics struggle as it is with sleep and insomnia, if getting better means spending more time in bed then so be it.
Secondly, make a plan and set realistic expectations. We’re all fans of plans and routines, right? So, set up a plan that can help you get back on track. Start small and be realistic about how much energy you will have in a day. If that’s only four hours, two for “work,” and two for taking care of yourself, that’s ok.
You can also set up small goals such as getting up at the same time every day or limiting the time you spend on your phone. For me, this looks like waking up naturally without an alarm and making sure I do one thing at a time. I focus only on getting breakfast, usually a bowl of cereal and a glass of water, then I get ready for the day, then I make the bed, then I journal, and so on. I take the day one step at a time and try not to worry or stress about what time it is or how productive I might be.
Thirdly, check in with yourself regularly. I like to journal first, but I do find talking it out with someone that supports you can be quite beneficial. They typically give me perspective and remind me of the things I can control versus the ones I cannot. It’s all too easy to get stuck in a downward anxiety-induced spiral that seemingly has no end in sight, bringing someone else on board can help you refocus.
Lastly, know that recovery takes time. You will not be better in a day or two, autistic burnout can last weeks, to months, to years. It’s a challenging process and there will be setbacks, but I believe the clearer we get on our support needs and our boundaries, the better we’ll become. Masking, for example, is such an instinctual and draining thing that I have to consciously work on not doing it. I have to remind myself that it’s ok to wear my earplugs in public, or my sunglasses inside, to ask to turn the music down in the car. It’s a slow process, but I’m still progressing forward.