Thursday, 24 March 2016

The A Word - BBC Drama

There's a peril to commenting on commentary, isn't there.
I'll do it anyway.

I've seen lots of commentary written by well known people, talking about The A Word, a drama on BBC this week.   It's about a boy and his autism spectrum diagnosis.  Or rather, it isn't.  It's about the whole family and their behaviour, with plenty of TV drama about things entirely other than autism.

For me, as an autistic adult, with an autistic family, I enjoyed it tremendously.  Even though it was personally hard to watch.  I've been that child who struggles to join in with the parties and events.  And I know how awful it is to be left out.  It just looks like we don't know and don't care.  Inside, it is heartbreaking.

I've seen criticism that it did not show 'Real Autism'.  In other words the 1 in perhaps 50 of us who is non-verbal and living in a care home setting because of extreme distress behaviours.

I've seen criticism that the diagnostic process was 'too easy'.  That it did not reflect the 2-8 year battles that so many parents and carers are put through.

I've seen criticism that the child didn't have a proper meltdown like 'real autistic people' do.

I've seen criticism that he knew the words of a lot of songs and "only 5% of autistic people have that savant ability". 

Just some highlights of the criticisms.

Well, it's certainly extremely important that those who are autistic, and have profound distress behaviours, are given excellent support.  It's also important that their families are given excellent support.  It's important that every one of us has that excellent support.  It's why people like me spend so much time training, and advising, across the country, when we're not doing our full time day jobs.  Because then, you enable many us to use our passionate interests to do what we do best; help society thrive, learn and be safe.

But the sort of autism we saw in that programme is as real as that 'care home setting' sort.  And a lot more common.   That's the exact difficulty many of us have in being taken seriously, and why the drama was a powerful one.  Because he was making eye contact, could speak, etc.  Because people think that's not 'real autism'.

And, because he had a shutdown, not a meltdown.

70% of autistic overload-events are shutdowns, not meltdowns.  Many of us do not have 'meltdowns' at all.  We are thus missed from prompt diagnosis, supports, accommodations and everything else.  We shut down.  We simply stop.  It may involve becoming non-verbal.  It may involve becoming immobile.  It may involve lying down on the floor for a while, totally still.  It is totally unspectacular to look at.  It doesn't get us diagnoses, because it doesn't bother other people.  A bit like only diagnosing Blind people as Blind if they are also violent.  Would that make sense?  "Ooo, she's not really Blind; she hasn't hit anyone repeatedly!"

So,...shutdowns....inside, it is searing fear and pain.  Terrifying lack of ability to process what's happening around us.  Our brains have reached 'super-hot' inside and have switched off most functions.  We are unable to defend ourselves, unable to explain ourselves.  Unable to speak. Unable to move.  Trapped.  Afraid.  Exhausted.  And, on the surface, no-one can see a thing. 

So I'm glad they showed a shutdown, not a meltdown, because goodness me we need to know about this.  And we need to respect it as much as we do with meltdowns - whose internal feelings are no different to shutdown for the autistic individuals.

As for his knowledge of songs, I strongly challenge the "only 5% of autistic people have savant ability" idea.   I know a few hundred autistic people.  I've worked in the autism world for decades.  Frankly, nearly all of them become specialists in memorising data that is of immense passionate interest.  Whether it's music, rhythm, pattern, word based, drawing based or otherwise.    That we don't recognise this is a worry to me.  Perhaps we're only looking for 'magic tricks'.  People who have not only that amazing internal database, but who can display it in ways that entertain the public.  Many do not ever choose to entertain others.  We're not entertainment.  The things become so private that no-one knows about them.  Not least because some therapies will take our passionate interests away from us, if we declare them, and use them to force us to behave non-autistically.  Well, yes, they do.  Go check it out.

So far, I like this drama.  It's not meant to be an autism study, but they've shown a sort of autism that few realise exists.  Yes, it's a young lad and many wish we'd had a girl in there - but perhaps we will in weeks or series to come.

Well done, BBC.

PS declaring an interest:  I also do some work as a consultant for the BBC on autism access, with a lovely team.  Not on this programme, though.