Tuesday 2 August 2016

"That's Not Real Autism!" How to change the thinking.

How did we get the bad myths about autism?

Steve Silberman in his book Neurotribes uncovers a lot of the hidden history of how autism was given negative comments and wrong assumptions.  http://stevesilberman.com/book/neurotribes/

Well worth a read.

Meantime, here's a bit of autism reality.  Take a look at this photo. It shows a crowd of people of all kinds.  Old, young, male, female, different ethnicities, different abilities...hundreds of people.

Imagine they are all autistic.  OK, arguably not many of us like crowds...but ...

How many are young boys and showing distress behaviour?

You see, if researchers collect together lots of young boys who are showing a lot of distress behaviour, and call that 'autism'....then do their research about 'autism' based on that, they have proved precisely nothing.  Well nothing apart from what autism may look like in young boys with severe distress behaviours.

Autism is not a young boy with distress behaviours.
Autism is a sensory processing condition, part of the natural diversity of humans. It comes with some challenges in seeing people's body language and face expressions fast enough...and in needing certainty and routine.  But, it comes with a brain designed to detect detail and be a specialist.  A brain designed to seek safety and accuracy, and keep others alive with those skills.  A brain designed to tell the truth and to be unafraid of social rank. A brain in so many cases capable of amazing creativity, love, friendship, caring.  New ideas, artistry, craft skills, musical composition, poetry, literature...

I know and work with so many autistic people with that range of things.  Not all, no.  But there again, that is true for any group in society.  Not all women will have those things. Not all men.  Not all people with size nine feet.  Not all people who are 5 ft 7.

Yes, autism can look like someone who has extreme distress behaviours due to sensory and social pain/exhaustion.   If you put anyone else in situations where they are distressed, they'll show distress behaviour too.  That's not 'autism', that's pain/exhaustion.

Autism also looks like me, a middle aged mum and businesswoman.
Perhaps autism looks like John, an older man who is a round the world sailor.
Perhaps autism looks like Sam, a quiet and well behaved young girl.
Perhaps autism looks like Jas, a young man in his twenties who is studying to be a Doctor
Perhaps autism looks like Mia, a faith leader caring for her flock.

Autism looks like a million...maybe two million...different individuals in the UK.  Each with their own personality, their own strengths, their own set of sensory and social and rule-based needs.  70% won't ever show a 'meltdown', but experience quiet 'shutdowns' instead.

Somehow, 100% of us got portrayed as young boys with extreme distress behaviour.   It's just bizarre.  If we are not a young boy with distress behaviours evident, so many of us are told we are not 'real autism'.   Well of course we are. We are as real as that young man.  "People like Ann have no idea what Real Autism Parents go through".  Yes, I do.

I have no idea what researchers have proven by studying young boys with such behaviours, mostly to the exclusion of the other 99% of us.  But it hasn't been anything very handy so far, I'd venture to say.  As a mum of a son who is autistic,  I can tell you a fair bit about such behaviours. It was lively. Chris and I laugh about it now. And he grew up.  In his 20s, he did his degree in Psychology & Counselling, has a past playing national level rugby, and is now an autism consultant and national speaker/trainer. Check out his site at www.chrismemmott.com   Fantastic, insightful specialist in autism.  Does a lot of work also with parent groups who want to understand how to help their own young people.  And a lot alongside us at Autism Oxford UK as part of that marvellous training team of autistic professionals.  Are we proud of him?  Oh yes.

But, for 20 or so years, we've been told autism is a disaster and we must focus only on that alleged disaster.  Because that will help the most people who really need it.   Did it?

We still have 85% of autistic people unemployed, because of the damaging myths.
We still have autistic people dying horribly young, because of the damaging myths... and society's continual refusal to help meet our (often simple) needs.
We still have so many autistic people without a home, living on the streets, absolutely crushed by the weight of this expectation-of-negativity.
So many autistic people are victims of crime, fraud, assault.  Living in terrible fear of other people because of this.  But so often treated as if they are the criminals.

What a waste of that majority.   The quiet, ordinary, everyday, quirky, kind, faithful autistic people who have always been part of our world.

Children who are distressed absolutely do need excellent, fast, appropriate help - for them and for their parents. Totally agree with that.


We need research that moves away from stereotypes, and starts looking for the positives. Where are the ordinary autistic people, living those quiet lives, and what are they bringing to society?

On those positives, we can help rebuild the lives and confidence of all of our autistic people.  Including the lives and confidence of those fine young men with the distress behaviours.  Because goodness me, they deserve better than the future awaiting them at present. 

We all do.

Meantime, I and so many fine others like me continue to work towards that world where families get the help and support they need. Where autistic people can access schools, doctors, hospitals, supermarkets, without pain and exhaustion.  Where schools do not have to turn requests for assistance into epic battles with the families and authorities.  Where employers get fabulous and dedicated autistic people working for and with them. 
Where all autistic people can bring the best of our skills and insights, the best of our personalities and love.  Whether verbal or not.  Whether of a high IQ or not. 
A world where autistic people are free to choose a faith, or not, and join in with community and society in safety and with mutual respect for one another.

And where we can be ourselves without being told we are not 'real autism'.  I'd say that thinking dishonours and disadvantages us all.  All autistic people are real autism.

So, that's the world I want for each young person, each adult.  It's a big ask, but we can work together for that future, together.