Intensité

One of the headline behaviours of autism is the meltdown.

I found myself explaining to my neurotypical coach on Friday what it felt like. He looked surprised and after processing the 2 hour session, I realised the reason why.

I didn't talk about sensory input/overload. I talked about emotional input/overload.

The typical presentation of meltdown is this: a child in a supermarket, throwing a tantrum on the floor, while an exasperated mother looks on with an embarrassed look on her face. There is inevitably  someone in the background looking on disapprovingly.

It bears absolutely no relation to my own experience whatsoever. Reason number 57 why I couldn't possibly be Aspergers. I never had these meltdowns. I've asked my mother. She has no recollection of my doing so either. What she does recollect was my lack of crying. Lack of anything. I was a 'very contented' baby. Until I learned to talk. At which point my favourite word was 'bored' shortly followed by 'why'. I didn't nap in the afternoon - mum says she so sorely wished I had because she needed the rest. I don't blame her. It must have been weird - I was her first and I just wasn't behaving the way she was being told I should be. There wasn't anything wrong - not yet. In fact quite the opposite. Ridiculously high IQ at 5. Ridiculously high reading age and vocabulary at 5. At 6. At 7. At 8.

I was social...well no I wasn't. I didn't play with dolls. Or the cradle my father handmade me out of wood. Not the dolls house he also made me. (I have no idea what happened to them or where they are now). Don't jump to conclusions. I didn't play with toy cars either. I played with nothing that required imagination - strange to think now for someone who has such a wonderful internal world to retreat to when needed. Except of course that that interns works is a patchwork made up of every experience I have had, everything I have seen, felt, heard. But I've explained that before.

At 9 it all went wrong. I stopped talking. I got headaches when I tried to do my math homework. Home was...well it was at this point things went very wrong there too.

But school was awful. The first two years less so but the point where they put me in a 'stupidly smart' group and I was the only girl in a state middle school resulted in my first day sick from school ever. It triggered something. An awareness that before that point I have been obvlivious to. I was different.  Marked. Worthy of the (wrong kind of) attention.

This should, according to the literature, have resulted in my meltdowns increasing. Being able to mask at school but coming home and acting out is so much of a classic autistic behaviour it's almost tripped into trope. Instead, I disappeared. Into myself and my head. And I didn't come out until I told my 'best friend' my parents were separating a good 5 years later. In that time there wasn't a single meltdown. There were fainting spells - a particularly mortifying moment in school assembly in front of the entire House (still a State school) in which we had to stand as we couldn't all fit. There were days when I didn't speak to anyone at all unless spoken to. More than I'd like to remember.  But no meltdowns.

We call them 'shutdowns'. I know this now. They're only supposed to last for the same amount of time as a meltdown according to the literature. The literature is wrong. Because, I think, it's different for girls.

I didn't have my first meltdown think I was 19. I punched a hole in a noticeboard in the Student Union. I'd like to say it wasn't about a boy, but of course it was (we're still friends, we still chat on Facebook, bless him). Switching from closed off to open was always going to be a bumpy painful process and it was. It wasn't all bad. A lot of fun was had. Adrenaline. Risks. Dancing all night. But those moments when I lost control scared me. Scared me to death. Because I had become the queen of control and it losing it wasn't something I wanted to be doing, least of all in front of other people. It scared me with its intensity. It scared me with its speed. And it scared me with its ability to leave me defenceless and vulnerable. I didn't have the word for it. I didn't know.

Over the years, as I got myself into more and more intense difficult stressful situations because I didn't have the self awareness yet to know my triggers, the meltdowns increased. I got called Princess. I'm sure behind my back I got called worse. I got confused because I'm not a princess - I'll muck in with anyone, help anyone out who needs it - it felt as though there were two sides to my personality - one super nice and helpful and lovely - and one who just walked out of social gatherings when leaving without saying goodbye because she didn't want to interrupt conversations and didn't think anyone would notice (yeah sorry for the worry I've caused over the years folks).

Over time, much more time, I learned. I learned what environments caused these spikes. How to recognise when one was coming and remove myself from the situation triggering it. How to self care afterwards. How to redirect the intensity of feeling, both sensory and emotional, that I could feel. I learned to give some of it to others, to take some of it and funnel it into writing and poetry, drawing and dancing. Then kitting and climbing, hiking and mountain biking. I learned to consume all of that feeling before it consumed me.

I did all of those on my own. With no knowledge of autism, Aspergers, meltdowns, shutdowns. And it really really wasn't easy. I got into situations I shouldn't have. I got into arguments I shouldn't have. I reacted in ways I shouldn't have. I alienated people I didn't want to. I ruined relationships I didn't want to. I got into relationships I shouldn't have. I left relationships in ways I shouldn't have. I have left, it is fair to say, an utter car crash behind me in some places, car crashes I am still gently trying to atone for to this day.

I'm not saying they weren't my fault. I'm saying they weren't intentional. I think that matters.

But imagine if, when I read a book on Aspergers my mum asked me to read 10 years ago, I hadn't read that all autistic people have meltdowns. Imagine if that book had described shutdowns better. Imagine if I'd been diagnosed then, or even as a child of 11 when it all started going really wrong?

Now imagine how much pain, loss, confusion, fear, anxiety, unhappiness and turmoil we could prevent in the 1 in 4 of us who are autistic females if we just sorted this out.

Please sort this out. NAS, anyone else who's reading/listening, please sort this out.

This is my truth. Tell me yours.