Making It Up

as we go along

autism

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? 😉

The Penalty area by Alain Gillot (translated by Howard Curtis)

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Buy at Amazon (affiliate)

A heart-warming novel about overcoming adversity, making human connections, and football. Vincent once had a shot at becoming a professional soccer player but a career-ending knee injury put an end to his dreams. A tough kid from a poor family, he has become an emotionally cut-off man with frustrated hopes and limited options. He finds himself coaching an under-16 soccer club in an attempt to keep alive his only passion in life. The team he coaches is little more than a roster of hot- headed boys, none of whom understands the on-field chemistry needed to win. Simply put, they aren’t of a championship calibre. When his unemployed sister Madeleine, a single mother, dumps her thirteen-year-old son on him, Vincent panics. With no clue how to take care of a teenager, he brings his nephew to practice and eventually throws him into the scrimmage. It’s then that Vincent notices there’s something strange about Le?onard. He has a preternatural ability for anticipating each striker’s intentions, making him a remarkably talented goalkeeper. But Le?onard looks detached, absent, lost. Le?onard has undiagnosed Asperger’s syndrome. What is equally clear is that, with Le?onard’s abilities as a goalkeeper, Vincent’s ragtag team has a chance to reach the finals. For that to happen, for the team to find a reason to rally behind this strange kid from Paris, Vincent will have to let down his guard and open his heart for the first time ever.

Please be aware that this review may contain partial spoilers in order to go into more detail than I usually do. In case you don’t want to read those, I’ve put them behind a read more link, and the TL;DR summary of the review is that I wouldn’t describe this book as heartwarming or engaging, but it’s an interesting examination of a fractured family and potential routes to recovery. The description of Asperger’s sydrome is perfunctory and stereotypical, but plausible (as long as we recognise that it’s the description of one person’s presentation, not all of them) and Le?onard is the character I’d very much like to have seen more of. Note I am NOT describing anyone having a diagnosis of Asperger’s Syndrome as being damaged/ fractured or broken, but I think pretty much all the other characters in this book are one or other of those things. With that said, I did really enjoy the book, in a kind of “sigh of relief yay the end is better than the beginning things are looking up” way.

[Read more…] about The Penalty area by Alain Gillot (translated by Howard Curtis)

The State of Grace by Rachael Lucas – an #ownvoices review

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Pre order The state of Grace at Amazon (affiliate link).

I’d like to introduce you to a girl. We’re going to have to pop back in time to the last 70s for this one, but I’m sure we can make it.

She’s kind of scruffy, not very fashionable. Tends to frown a bit when she’s concentrating or confused, and that’s a lot of the time when she’s in school. Maths is really easy, reading is her all time favourite occupation, and she’d rather sit in at playtime and teach herself German from a book than risk playing out in the playground with the other girls.

Fast forward to senior school. Her parents pulled out all the stops to get her into a private school (thanks go also to the assisted places scheme, as without it the school wouldn’t have been nearly as good a one) because the girl really really didn’t want to go on to the local high school with the girls who had bullied her throughout primary school. And when you get to 11 or 12 you don’t get to just go play football with the boys any more, even this girl knows that.

Senior school was a bit of a haven once she’d made it to third year and made friends with a new girl who was bigger than most of the bullies. Life got a lot better.

But life was always confusing, because back in the 70s and 80s, girls didn’t get diagnosed with autism, not even high functioning autism or aspergers. (Let’s not get into the debates around functioning labels at this point, that’s what they were known as back then.) And so this girl struggled through life with anxiety, or diverticulitis, or depression, or any number of other issues right up until in her 40s she suddenly got her autism diagnosis.

How different could it have been, if I’d known the truth about myself from an early age? If I’d picked up a book from one of those library shelves and seen myself staring back from the pages. I kind of did – I loved Meg Murry in a Wrinkle in Time. I lived in hope that someone would swoop in from a far off land and rescue me like in The Chrysalids. And if your book had changelings, time travellers, or alien lands I was all over it. But there was never anyone like me, in my world, with my problems that I could recognise.

The State of Grace is the book I’ve always wanted to read. I actually cried with happiness when I finished reading it because it is just so perfect. As regular followers of the blog know I’ve known Rachael for years and been a massive supporter of her writing career throughout. But I would shout about the State of Grace regardless of the author (much like I did with M is for Autism and On the Edge of Gone) because I think it is so so important for our often invisible girls to see themselves on the page. To find a friend in fiction – to know they aren’t alone, they aren’t aliens or changelings, or adrift in time.

Teenage girls can indeed be autistic, and it makes what is a fairly tough time in life anyway into an absolute minefield. If the State of Grace can give people a glimpse into what it can be like and demystify the whole A-word thing a little bit, it will do awesome things. I urge you to read it whether you’re autistic or not because I think Rachael has written an incredibly honest, warm hearted and funny book that deserves the widest possible audience. And also because Grace deserves to have friends, as do we all.

The state of Grace publishes on 6th April this year, and is available for pre order at Amazon (affiliate link) and other bookshops.

A boy made of blocks – the blog tour

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I read and reviewed A boy made of blocks last September – you can read my thoughts here. To summarise from then:

although some parts of the ending are kind of predictable, I totally admit that I was swept up in the emotions, and may have shed a tear or two (or even a few more) at what felt like the big climax at the end. (Turns out it goes on a bit after that, but loose ends irritate, so I’ll forgive the tidy up.)

All in all, I’m glad I read this one. Hope my perspective is useful

So I was wondering what I could add to a review this time around, and in discussing the book further on twitter, I found out.

In my first post, I queried some of the language in use in the book. For example the passage around diagnosis:

Last year, the paediatrician told us, after interminable months of tests and interviews , that he is on the upper end of the autism spectrum. The higher-functioning end. The easy end. The shallow end. He has trouble with language, he fears social situations, he hates noise, he obsesses over certain things, and gets physical when situations confuse or frighten him. But the underlying message seemed to be: you’ve got it easy compared to other parents.

This is problematic for those of us with autism spectrum diagnosis. We’re moving away from functioning labels – recognising that someone who is high functioning at some times and in some situations may be low functioning at others. It doesn’t help to think of autism this way – it isn’t a linear progression. There are some excellent articles around on this sort of topic – for example here and if you google functioning labels autism, you’ll find a whole stack more.

Going back to the linear progression idea, I also picked up on references to the autism scale. This is not a phrasing that I’ve come across (and I have more experience with autism than just my own diagnosis – I’ve worked in care homes with autistic adults, and have other family experience too) so I went on a hunt. There does appear to be a three step scale mentioned with the DSM V which is the American diagnostic manual, which may or may not be referred to in diagnosis here. There’s a breakdown of diagnostic criteria and so on on the National Autistic Society website – it doesn’t mention the autism scale. I think this would be better understood as the autism spectrum, which encompasses a set of different diagnosis. Again though, they aren’t linear, and someone can have aspects of more than one diagnosis.

Basically, autism is complicated, and dealing with it as a parent is kind of a minefield. The best advice I can give is to read widely, find support groups that include autistic adults and listen to us.

I don’t regret in the slightest reading this book – I very much enjoyed it. It *is* possible to enjoy a book while recognising problematic aspects, and hopefully I’ve given some further explanation on parts of this which is useful. Do let me know what you think in the comments.

A boy made of blocks is available in a number of different formats from Amazon. (affiliate link). Alternatively, if you find any of my writings on autism useful, feeld free to

Check out the other blogs on the tour:

What Autism is

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To me.

(I can’t define it for anyone else. And if you don’t experience it, you do NOT get to define it for us or to draw us as suffering monsters. If you could refrain from that, that would be nice?)

Back to me. 

Actually I think you *can* see it in my face. It’s that little worry line between my eyes. Having to concentrate really hard, and still not quite getting it. 

It’s a lack of confidence, constantly at war with the single minded focus on an interest. At the moment my interest is art, and objectively I can see I am improving, but I crave external feedback as well, and I want to be the best. 

Numbers, stats, rankings, they’ve been an obsession on and off for as long as I can remember, fed by the unhealthy actions of the educational system that didn’t quite know what to do with me.

Primary school had strengths, lots of them. A small school, 100 children or there abouts across 7 years. Teachers knew us well, we often spent two years in a class, and there was a lot of flexibility, so it didn’t matter quite so much if you were found reading books under the desk when you were supposed to be doing maths. We kept chickens and had a big school field, and playing football with the boys might have been slightly odd, but it wasn’t the end of the world.

Secondary school was more challenging, and perhaps they should have noticed then that I was floundering, but I don’t think people really knew about autistic girls in the 1980s. Certainly not bright ones, who could mostly make the right noises, even if they weren’t quite at the right times. And being horsey was a way to excuse being unfashionable and friends were a small number but still some.

Autism is never quite fitting in. Being the only girl at karate, and the only girl in the security team. It’s drinking too much at college because it slows your racing brain when nothing else does. It’s finding an identity beyond anxiety and depression but oh so late. It’s wondering what I could have been, could have done, if I’d known, understood, forgiven myself, known how to pace myself better.

Autism is not my excuse. It’s never an excuse, because I don’t need one. I am. And I’m still learning how to be the best me.

Autism is maybe a strength, if I can work out how to focus it to help me past all the bits of me that don’t work so well. Autism just is. 

Other people have written about their own experiences, like flojo