Making It Up

as we go along

autistic burnout

How do you deal with change when it's you that's changing?

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I’ve been writing on this blog for 14 years. If you’ve been reading as long, you’ve travelled a moderately bumpy road with me – childbirth and rearing, pregnancy, lost pregnancies, in and out of work and career changes, my sister’s death, a move to a whole different county.

More recently there’s been the autism thing – suspicion, diagnosis, self analysis and acceptance. You’d think it might be time for a more settled period, all things considered.

Apparently not. Recently my body has been playing up a bit. Shoulder pains, back spasms, extra periods, and then suddenly, no periods at all. I took myself to the GP and was sent for blood tests and referred for an ultrasound. I don’t need the ultrasound though, as the blood tests confirmed that I’m heading full tilt for menopause.

This surprised me a bit. I’m only 46 (nearly 47) and I thought that that all happened later. There’s no pattern in the family for a variety of reasons, not least being I’m the eldest. And I realised that I don’t know anything about it – what to expect, how to tell, do I prepare, are there benefits? (Lower shopping bills at the very least?) First of all I was angry – I felt like something had been snuck up on me – what if I wanted another child? Had my last chance evaporated without me even noticing? (I don’t want another child. Well I do, but only in the same way that I want all the books, I don’t actually want to go through pregnancy again, and my heart and hands are pretty full with the four I have already.)

It’s just, I don’t know how to be this next me. We set a lot of store by our roles in life, and somehow, to me at least, the role of mother includes fertility. I’ve had hiccups with that before (I mentioned the miscarriages above) and those dented my self image somewhat but it all sorted itself out, and I was still a bearer of children. But if I’m not any more, I need to think about who and what I’m going to be.

I know, I’m overthinking it. It comes with the territory of being me, whoever and whatever that means, and I could as easily stop overthinking as I could stop squinting, being deaf or short sighted. Actually, stopping being short sighted would probably be a lot easier, I think there’s an operation for that. Overthinking, not so much.

So, next steps. Could it be time to finally accept the whole growing up thing? Or is it time to admit that’s never going to happen, and given that the alternative to changing is less than palatable, I guess change is what I’ll do.

Any hints, tips, health recommendations from those who’ve gone before? I’ve not had any hot flushes yet – is it possible to get through this without any at all? The GP said my hormone levels implied I would have had some, but I really don’t think I have. And could all of this be linked with misplacing my words – I had wondered whether my art and photography experiments had pushed the words out, or perhaps it was an autistic burnout or regression, but now I’m wondering if all of these changes are interlinked.

I have more questions than answers. I *am* more questions than answers. But that’s not unusual either.

The sticky blogging webinar I just watched told me that what I need to make it as a blogger are great headlines, story with emotion and something else I’ve forgotten already. Does all of this qualify?

Autistic burnout/ regression/ inertia – it's not just me.

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A few weeks ago on twitter, I put out the following tweet

[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? 😉