A few weeks ago on twitter, I put out the following tweet
Looking for resources on autistic inertia, burnout, regression particularly with reference to late diagnosis. Grateful for RTs
— Jax Blunt (@liveotherwise) April 9, 2017
[Text reads: Looking for resources on autistic inertia, burnout, regression particularly with reference to late diagnosis. Grateful for RTs.]
It’s my top tweet of the month, with hundreds of interactions. It turns out that the symptoms I have been feeling and struggling to put a label on are all too common across the adult autistic world. Accordingly, I’m starting a blog series to explore the issues, and attempt to gather solutions.
(I’m not going to speak for children here, only for me, and the people who’ve replied to me.)
The three terms have, for me at least, slightly different connotations.
Autistic burnout – this is a massive crash. For many of the people responding to the tweet, it was related to the shock of late diagnosis, trying to reassess who you are against a changing understand of self. (Yes, it can be a shock to be told that you are autistic, even if you’re overall positive about the concept. Remember that not good with change thing? Changing your external label is a *big* change.) However, it can happen at other points in life, may be related to stressful events, or other health issues, and the menopause was implicated several times. Lots of the resources I’ve read around it relate it to trying to be not autistic, or behaving in a socially expected way, and thus causing exhaustion. (see articles below.)
Autistic regression – described as a loss of skills, and probably the least clearly delineated of the states I asked about.
Autistic inertia – this is a stalled state, in which for whatever reason you can’t get yourself going. Can happen at any stage, and over anything, I came across the term in a thread by someone describing why their school/college work was always late. Oh yes. Part of this could be described as an executive function issue, but I also think aspects of anxiety and perfectionism can come into play. It’s also possibly the state that it’s easiest to do something about, perhaps a visual timetable, accountability partner, or even something like a bujo (bullet journal for those not in the know) might be ways of getting the problem under control. (If you’ve words of wisdom to share, please *please* drop them in the comment box below. If you haven’t commented before, it will go into moderation, but I’ll get to releasing it at some point honest.)
The sad thing about the twitter chat was that although there were lots of people identifying with the symptoms, there weren’t nearly as many people offering up research or strategies for dealing with the issues. So I’m hoping in this blog series to gather together the resources I was offered, and maybe start to build some more understanding of both the issues, and possible solutions for them.
Here are some of the links I was sent, to expand on what I’ve written above.
On burnout.
Judy Endow on Autistic burnout and aging, including tips on increasing sensory regulation to navigate autistic burnout.
Karletta Abianac has a kindle book on Successful to Burnt Out: Experiences of Women on the Autism Spectrum (affiliate link) and here’s a link to her blog post on recovery.
A detailed description of burnout/regression via a web archive link to Autism Information Library – Help I seem to be getting more autistic
On inertia
This is from Kalen – a personal account of inertia Long and detailed and includes suggested strategies for approaching the issue.
From UnstrangeMind Autistic inertia, an overview
Wading through treacle is an entire blog on autism, inertia and catatonia.
So, that’s pretty much where I’m up to so far – if I’ve missed out any resources that you’ve sent before, or that you can’t believe no one sent already, please do leave them in comments here. In the next post, probably some time next week, I’ll go into more personal detail on my own experience of these states. You’re looking forward to that, aren’t you? 😉
now you may just have answered something for me there Jax! The last few events I’ve done, I’ve had a week or so of aweful fatigue beforehand. Just can’t muster myself to get the organising and packing etc done and seem to spend a lot of time hiding under the duvet. I’ve no real answers apart from finding that going with it, hiding for an hour and then doing a little more prep before hiding again seems to be sort of working. On the flip side, I do seem to be catching up on my sleep a bit…..
Fantastic blog and resources Jax. So important to do this. I will share so keep me tagged in your posts on twitter please.
https://planetautismblog.wordpress.com/2014/03/05/aspie-burnout/
Hi,
On regression, for me it was important to stop what I was doing and ‘regress’ / go back to doing something I was good at years ago, which is studying. It is working well for me, I am doing something that I really enjoy and am good at so it is giving me a much needed positive boost to my self-esteem, although I am twice my fellow students’ age. Maybe not everyone’s definition of regression (some people may feel it’s when you regress to a much younger developmental stage, like thumb sucking or bed wetting), but it feels right for me.
Thank you Jax.
I followed your post on Twitter, as I see a lot of myself in this topic.
I’m reading / hearing about and from autistic people and think “what’s wring with me? I’m not that positive, optimistic woman, who seems to be on the spectrum”
Of course I have good days too, but I feel overwhelmed and down a lot more. I’ve got the feeling that it got worse with the last therapy, which failed. At the last session the psychologist told me they will put me through the ASD Assessment, because it looks more likely, that I am on the spectrum, than anything what was diagnosed before. The first tests showed that they seem right. Since then I don’t know how to handle myself and what to think out of all. Your description of a shock is probably right. I can’t find the right words for it, but can I see a lot of myself in your words.
Fascinating read. We’re only just starting on this journey with my 10yr old son (lie…been doing it for 10yrs! Only now we KNOW we’re doing it!) I’ve been searching out mum’s in same position and completely forgot to find adults in Lewis’s position. Glad I found you.
Happy to have you on board 🙂