Saturday, 26 March 2016

Shutdown: Autism's hidden majority

"Autism.  It's all about meltdowns, isn't it?  You know, boys who hit and punch and bite?"

"Autism in girls and women?  Oh they're the worst.  There's not nearly as many girls as boys with it, but their behaviour is way more extreme."

Professionals like me spend a lot of our lives explaining realities.  Neither of the two statements above is true.  Yet, so many people think that they are.  Even people working with autistic individuals, sometimes.

One of the big online autism communities asked its members whether they mostly experienced meltdowns (like a temper tantrum to look at, but never used to manipulate others - and never in the person's control).  Or whether they mostly had shutdowns (where they can't move/talk/think, feel really disorientated and then really exhausted, etc).

70% said they always or nearly always had shutdowns, not meltdowns.

I asked all sorts of autistic colleagues and friends.  Some with 'classic autism', some with other sorts.  Nearly all of them said they always, or nearly always, had shutdowns, not meltdowns.

In particular, the females I asked nearly all had shutdowns.

What's a shutdown like?  I can explain mine.  If you put me under intense social and sensory stress, my brain starts to feel disorientated.  I lose the ability to talk. I can sometimes write, though that ability gets very erratic the worse it becomes.  I lose the ability to work out how to look after myself, or get myself home in busy streets.  There is a sensation of great internal brain-pain/fuzziness.  Things can look weirdly big/small when it's happening.  Afterwards, I'm totally exhausted and need to recover for a good hour and a half, often longer.  It's not in my control, at all.  I'm reminded of epilepsy 'less than a full seizure' type events, and what friends who live with epilepsy say about their own experiences going into, and out of, such events.  Very similar. 

It may be quite rare for autistic people of any age to only have meltdowns.
It may be quite common for a lot of autistic people to never have meltdowns.

It seems that a huge number of autistic people have shutdowns.

What do we know about shutdowns?  Pretty much nothing.  I've searched high and low for good research on them.  Nothing. 

What happens to people who 'shut down' instead of 'kick off'?  Nothing, really. Apart from people thinking we are very rude for not talking or not joining in.  No diagnosis for us, because we're not creating much difficulty for others.

Various colleagues ask, "Where are the missing autistic women?".  I think the answer to that is simple.  We're looking for girls whose behaviour is extreme. There was a good study done that showed that girls with an autism diagnosis only got it because their behaviour was extreme.  More extreme than the boys.  It had to be that extreme before anyone took it seriously.

And yet, if you look in the diagnostic lists, violent behaviour isn't even one of the diagnostic tick-boxes.  Autism is nothing to do with being naturally violent.  At all.  I've said it before and I'll keep saying it.  It's really not.   A few become violent because of extreme fear.  A few become violent because of extreme pain.  Some become violent because of other conditions that aren't autism.   Most are never violent.   Most are extremely peaceful people who wouldn't hurt a proverbial fly.

I suspect most females on the autism spectrum experience shutdown rather than meltdown.  I suspect they never get diagnosed as children, and end up in a heck of a situation.  No help, no support, no accommodations.  Judgement, isolation and ridicule aplenty, though.  No wonder so many autistic women get a late diagnosis.  One that happens after they develop eating disorders, anxiety, depression, self harm and a host of other stress-and-fear related things. The same will be true for many males who experience just shutdown too, I'm sure.

We need to look at shutdown, professional colleagues.  We need it researched. We need it recognised, and we need people trained to ask about it.

Thank you for listening.