On Burnout and the Catch-22 of Clinically Significant Impairment

 

(This will probably be something of a formless ramble, which is probably because my thoughts on it are something of a formless ramble, but I need to write it down somewhere and apparently that somewhere is going to be here.)

It’s been two years, give or take a few weeks, since my last post here. Back then I was writing full-steam ahead. I could knock out 1000 words of flash fiction in half a day. I was 15,000 words into a novel with ideas for two others waiting for me to have the time. And I was always, always reading. I usually had two or three books on the go at once. And then I hit a wall.

I thought it was writer’s block. Turns out it was autistic burnout.

I like the autistic community’s term ‘burnout’ rather than ‘regression’, because to say that I’ve regressed suggests that I’ve reverted to an earlier stage of development. I haven’t. I’ve lost abilities that I’d always had. The first one to go was the ability to isolate foreground noise from background noise. I began to notice that I couldn’t make out what people were saying if there was a hum of other voices, or music, or the clink of cutlery on china. I thought I was going deaf. I learned to semi-lipread in an amateur, best-guess sort of way. I googled ‘am I going deaf’. I didn’t tell anyone.

Eventually I found a link to sensory processing disorder, and from there to ‘autism? maybe???’ and from there to ‘but I can’t be autistic, my brother is autistic and I’m nothing like him’ and from there to a list of autistic symptoms in women and from there to a study that found that the younger siblings of autistic people have a higher likelihood of being autistic themselves, and from there to the understanding that forewarned might be forearmed for the younger sibling of a diagnosed person, but not if you’re the older sibling and you’ve already struggled, undiagnosed, through your entire childhood by the time anyone in your family even knows the word ‘autism’.

Backwarned is backarmed. This is not a saying.

As I worked through the list of symptoms (…yes… yes… heavens yes… yes… surprisingly, no, actually… yes… etc) a memory surfaced. I’m sitting in the car, my mother is driving. I’m twentyish. My brother has recently been diagnosed. She’s talking about autism and I’m wondering if that could explain the trouble I had growing up: the inability to make friends, the ability to say exactly the wrong thing, the misery of school, the escaping into books, the mild terror that accompanied every social interaction. And then I dismiss it, because my high-octane coping mechanisms are in place now and I have friends and a life, which is all I’ve ever wanted. I’m burning pell-mell through resources that are meant to last me the rest of my life but I don’t realise it and even if I did, I’m not sure I would care. Like a smoker who pretends not to see the health warnings on the packet, I don’t want to give up what I have.

(I try not to scold Past Me for this. We all find it hard to think long-term.)

Having made this connection, I promptly forget about it for twenty years. I don’t just put it out of my mind, I literally forget it, as if the thought never passed through my head. And then, twenty years later, when I’m reading through the list of autistic symptoms and thinking ‘well, this would never have occurred to me’, it occurs to me that it has already occurred to me, and that I decided to not think about it. That I didn’t need to think about it, because it wasn’t a problem anymore (haha).

In fact, what I did was exactly what the DSM-5 does: it refuses to accept that there’s an issue until the issue begins to create issues. In order to get a diagnosis, one of the criteria is that “symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning”. But lack of impairment doesn’t mean lack of symptoms. This criterion in the DSM-5 suggests that I was autistic as a child, then stopped being autistic, and then suddenly became autistic again two years ago, when the demands of my life finally outpaced my hard-won coping mechanisms. This is, to put it politely, rubbish.

Catch-22: to prevent clinically significant impairment – to prevent burnout – I needed my autism to be recognised and diagnosed, but this could not happen without clinically significant impairment. My burnout could not have been prevented until after it happened. Yossarian would have whistled in admiration.

As a child, I was impaired (or ‘miserable’ as I would probably have put it at the time). Then a few years during which I thought I wasn’t impaired, but it turns out that this was a fallacy and that I was just really really good at hiding it even from myself, and this is what’s changed. Post-burnout I struggle with every aspect of my life. My executive function has all but collapsed under the strain of trying to organise four people when I’ve always found it hard enough just organising one. My social anxiety and AWOL social skills make interacting with other people exhausting. Two busy days in a row can knock me sideways for a week. I avoid leaving the house as much as possible. Everything is too loud, too bright, too much.

There are upsides, of course. In retrospect, my entire life now makes sense. I finally know the names for so many things that I never had the words for. Stimming. Social hangovers. Sensory processing disorder. Dissociation. Special interests. Shutdown. Meltdown.

Here’s another memory surfacing: I had a meltdown on the morning of my wedding. At the time it was put down to ‘ah, bridezilla, we’ve been expecting you’ but actually it was my hair. The hairdresser couldn’t get it right and she must have put it up and taken it down five times, each time yanking my head this way and that, poking my scalp with hairpins, just… touching… me (I don’t like being touched by people I don’t know. I can say this now). By the time she’d finally finished I was almost vibrating with the effort of hiding my distress and when I realised that my (beloved) sister was doing her beautiful calligraphy on the backup place cards instead of the proper ones, I exploded. I feel quite bad about that but she was very understanding. She is a very calm person.

I, on the other hand, felt constructed almost entirely of suppressed rage.

Not right now though. I sometimes think about getting angry when I think about how my life might have been different if I’d been diagnosed in childhood but firstly, that sounds like a lot of effort and secondly, there’s no reasonable way that anyone could have known. Or about how my life might have been different if I hadn’t thought, at the age of twentyish, that I’d grown out of it (haha) but then I remind myself that there’s no reasonable way that I could have known either. Also, I would not have had my children. I might have had other children, but I wouldn’t have had the ones I have now and that’s quite a horrifying thought. I can’t entertain regrets that wish my children had never been born. It makes it easier.

Perhaps the anger will come later but for now I don’t have the energy for it. Mostly I’m just tired. I feel like I’ve crossed the finish line of a marathon and I’m all right, or at least I will be all right, but just at this moment what I need is to put on a blanket and sit down for a really long time.

So that’s what I’m going to do.

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