The first special interest that drops out of my life, when the beginnings of burnout start to singe my mind and body, is writing.
It’s not always that I don’t want to write, it’s more the words and sentence formations don’t come easily or clearly. I think they call it brain fog… or at least that’s how it feels, fogginess inside my head, where thoughts are stuck ruminating about the *stress* I’m experiencing with little room for much else, especially not much creative.
The garden, another much loved special interest and my hyper-focus throughout spring, has been throughly neglected too. My garden gave me so much solace and life over the past year, but I have let it wither and wild without me. Only the allotment has received care and much of that has been propelled by my partner.
I’ve been off work since early August due to stress and although it’s been prime weather to do enjoyable things I’ve barely left the house. I’ve experienced more shutdowns and meltdowns than usual too. I have been working to understand them since discovering I am autistic almost 2 years ago; why I experience them, how I react when I have them, what helps or hinders my recovery through them.
Earlier this year, I had gotten to a point where I could go a whole week or more without a shutdown, and when they happened they would only last 30 minutes to 3 hours. However, recently I’ve reverted to multiple shutdowns a week, sometimes multiple in a day and they are not shaken easily. I’m spending whole days in bed, unable to speak and I’m barely coping any better than when I was undiagnosed. I’m also experiencing meltdowns, something I don’t experience when I am not stressed or burnout. These days are the worst. I wouldn’t say I am consistently depressed but days I experience meltdowns scare me because I experience intrusive thoughts around self-harm and suicide. It’s not that I want to die, I just don’t want to exist in my mind in that precise moment.
Burnout has had a profound impact on how I experience autism. What once felt manageable now feels uncontrollable. This is the first time I am experiencing full-on burnout as a diagnosed person and the primary thing I’ve been able to do to aid recovery is cut out working, for now at least.
There are no official recovery paths for this, no manual that tells me how to get through. There’s also very little academic or medical research into autistic burnout. Consequently, frontline medical professionals are not equipped to identify and differentiate it from depression, anxiety and other similar mental health conditions, meaning they also can’t help us deal with burnout adequately.
Raise your hand if you’ve been referred for CBT when really what you needed was support for Autism, cause… me too. It’s not uncommon for therapy to be recommended to Autistic people seeking help, but as the Investigating Autistic Burnout report states ‘some autistic adults did not benefit from standard psychological therapies’ and ‘CBT could further add to the cognitive load experienced by autistic adults.’ Essentially, traditional therapies can exacerbate our stressors.
I’ve tried various therapies, both before I knew I was autistic and while I was awaiting medical diagnosis, with various success. Some gave me genuinely helpful techniques that I use to this day, and others just made me feel like I was ‘doing therapy wrong’. I would be frustrated when the recommended calm and meditation apps sent me into rages that ended in my phone being thrown across the room. I would feel confused as to why my thought processes were labeled as ‘catastrophising’ when they were based on real experiences and outcomes. And I would get vague feelings that my therapist wasn’t hearing me when I would explain why certain strategies just didn’t work for me. As much as I wanted them to, they just didn’t.
Furthermore, advice given for recovery of depression, anxiety, and stress is to increase social interaction. Rather than to isolate yourself and shutdown, it’s recommended that people seek solace in friendships and family. However, the Investigating Autistic Burnout Report notes that for autistic people recovering from burnout this may create ‘cognitive overload’ and is a stressor that alone can also lead to burnout. Until I read this, I hadn’t realised that as I got closer and closer to full scale burnout over the past few months, I had been steadily reducing my social interactions, especially face to face ones. I realised weeks had passed without me meeting up with anyone. On the few occasions I’ve made the effort to meet people in person I return home face achy, eyes heavy and spent most of the day in bed resting and recovering. Over the years, I’ve lost count of the number of times I was told by a therapist or medical professional to go hang out with my friends and they just didn’t get it when I would try to explain how it was so much more draining to do that. Right now, I’m trying to honour my need for isolation as part of burnout recovery and most days I don’t mind it, but occasionally it does feel lonely.
Finally, and most striking of all, the Report mentions the impact of ‘unaccommodating neurotypical environments on autistic adults’ leading to burnout. FINALLY, someone said it! The majority, if not all, of the burnout I have experienced could have been alleviated were I adequately accommodated. Based on my own experience, it seems a lack of accommodation (which in essence is a lack of autism acceptance), especially in repeated episodes, can lead to:
feelings of isolation and/or rejection
a need to reduce socialisation
negative self talk
emotional dysregulation and/or higher management needs for emotional regulation
more frequent and/or more intense shutdowns and meltdowns
the stress response being activated
low energy, both physical, mental and in relation to special interests
trauma
I’m still trying to work out how to undo all of this, how to get back on track and feeling ‘normal’ or baseline again. I don’t know if I’ve quite cracked it yet, but for anyone else experiencing burnout this is what’s helped me through so far:
going on sick leave from working
leaning into new hyper-fixations as and when they come
ignoring the special interests I don’t feel drawn to
eating my favourite foods
increasing plain foods and reducing textures when needed - I’m eating way more chicken nuggets than I’ve ever eaten!
sitting outside and reading
allowing myself time to zone out and/or doom scroll
gentle exercise, usually a daily walk through the local woods, but also allowing myself to skip it when my body feels too heavy or getting dressed is too overwhelming
letting go of guilt around my lack of communication or socialisation with others
assigning 1-2 days to deal with work admin (like chasing people for info and answers) so I can ‘let go’ a bit and have a clearer mind on other days
delegate or asking for help from my partner without shame or guilt
lots and lots of alone time
getting on top of chores like laundry
rewearing the same clothes days in a row
journalling the good and bad stuff
lots of TV, especially comfort shows and comedy
Hopefully, since I’ve finally been able to write again, this is a sign I’m starting to come out of this, that the worst of this burnout is behind me. Or, you know, it could be a fluke day… in which case you’ll hear from me in a few months. hehe >.<
As always, it’s really joyfully to have you here, thanks for reading.
Chelsea
An excellent post Chelsea, thank you for sharing. I’m often the same when I’m in autistic burnout: one of the first signs is letting my writing practice go because like you said the words just don’t seem to form correctly in my mind.
Also THANK YOU for sharing that info from the Report on Autistic Burnout. The amount of times I’ve been told I need to ‘socialise more’ to come out of a ‘depressive episode’ is insulting. It’s nice to read that my instincts were in fact correct: I need LESS interaction not more when I’m burnt out.
Thank you so much for writing all this. I'm currently in a depression and only 6-9 months into a self diagnosis of autism. I was doing ok at the start but it's taking it's toll on me at the moment. So many flashbacks to previous interactions and situations in the past that were due to autism and misunderstanding. I'll try to refer back to this post over the next few weeks/months and see where I can help to reduce stress and improve things. Thank you again Chelsea. X