Saturday 2 April 2016

Autism: "Isn't a cure a good idea to save you from pain?" No.

I'm going to delve into the 'cure' debate.  Brace yourselves, good people.  And listen, thoughtfully.  This is of course just my 'take' on this.  Go find others to talk to, too.

I respect the choice of individual autistic people.  A smallish number of autistic people want a cure for autism.   Whatever that might mean.   A smallish number of parents and carers want a cure for autism. 

Quite a few of the bigger charities and research groups hope for/look for a cure for autism.  That's interesting isn't it.

Most autistic people do not want a cure for autism. In fact, many of us are quite aghast about it.  
I think I can be confident in saying this.  Any number of surveys and polls have been done, over the years.  An example?  Chris Bonnello ran one in 2015 with 477 participants - self selecting.  He's a mathematician by trade, so knows his statistics. is the link.  Yes, it's just one survey.  'Google'  is your friend here, though.  Or other good search engines.  Find other surveys.  The results aren't a lot different.

So, that survey.  Cure.  What does it say?  

It asked people if they are autistic, or not. It asked if they wanted a cure for autism.  Some 80 autistic people in the survey. That's a reasonable number.  14% wanted a cure.  A clear two thirds of the autistic people said no to a cure.

What of the non-autistic relatives, though?  Did they want a cure? 38% did.

This is interesting, isn't it.  Still not a majority wanting a cure.  But a much bigger chunk than the autistic people.

How does one 'cure' autism?  What would that even mean?

Seriously.  Autism has positives.  Honesty, integrity, greater morality, amazing focus, senses that can detect danger before others can.  Generalising, of course.  But those are well known and well researched findings.  What are we curing?  How do you intend society to 'cure' just the problematic things?  What does it say about society if 'cure' is based on fear, hate and myth, which frankly a lot of this quest is.  It's based on worst-case examples, mostly.  And often 'worst cases' where teams and relatives haven't understood autism and how to actually help.

It's a brain wiring difference that happens from before birth.   Arguably it's a quest like 'curing' left handedness, 'curing' femaleness, and 'curing' being gay.  "Want to be cured of your femaleness? After all, most women are weaker than men!  Most women cry more!  I knew a woman who was violent, and more who were in pain, therefore they must all be cured of their femaleness! " That would be a bit weird, wouldn't it, if we thought like that.  Well...we're thinking like it with autism, folks.  And, of course, in some cultures, being female comes with a very heavy price indeed.  Currently, in our culture, being autistic comes with that same heavy price.

I think some well meaning people imagine it would just be something that takes sensory pain away, so we can cope better.  Well, I think most of us would like less pain, for sure.     How about the radical idea of changing the thing that hurts so many of us?

I'd say they can 'cure' 95% of our pain without curing us. The pain these days is often from artificial environments, many designed to overload the human brain. Take your average supermarket. In ye olden days, I could go into almost every small shop in the UK without difficulty. Very simple layout, simple choice of product, ordinary lightbulbs, one old fashioned till that would simply go 'ting' when opened.

Now, every corner store has strobe-effect fluorescent lighting, bright shiny colours in every corner and on every surface. Endless perfumes and smells competing with one another, tills that beep and flash, and I am in increasing pain.  I was involved in creating this film from the National Autistic Society which gives you a clue.  Turn the sound up first.

The odd thing is that most other people don't like sensory overload either. But the marketing geniuses do, because those things push ordinary brains into illogical decisions: "Oooo I must have the bright, shiny, fragrant thing!". (...Even if its chemicals make me ill and harm the environment, but make big profits for companies.)

School classrooms.  Now such a sensory nightmare that almost no autistic child can cope.  We coped a lot better before they did that to the classrooms and changed the teaching styles to endless chatter. I note that our results in schools are way worse than a lot of other places.  I'd argue most children can't cope with it.

Arguably, we are life's 'canaries down the mines'.* We spot environments that are unhealthy for everyone, not just us.

We need to have a think about what we mean by 'cure'.

And we need to be so very careful that the 'people like that are all monsters/tragedies' groups do not get their idea of this 'cure'.  We're the people who test-drive everything in your life, quite frankly.  Internet?  That's us.  Car's brakes that work every time?  That's us.  Planes that stay in the air?  That's us.  Our society's infrastructure, so much music, so much art - so many things which autism has brought to you.  We test and test until we know it works. We can see radical possibilities. I generalise. But goodness me there's truth to it. Want a world without us?  Think it's going to be an improvement?  Think again.

One of the other 'cure' arguments I hear?  "People like that are a drain on our economy.  Every autistic person costs millions to society.  They should have to take a cure, or live without money and support; after all, they would have chosen to be autistic when a cure was available".

Let's look at that one, too. 
a) There is no cure.  One cannot cure a different brain.

b) As we can see above, most of us wouldn't take one anyway.  What are they going to do, force it on us?  Starve us into taking it?
c) We do not cost £millions to society at all.  Only 1.6% of autistic people are in a care home.  Quite a few are with relatives and unable to work, though.  Nearly all of us want to work.  The biggest thing stopping us being taxpaying working members of society is the lack of access to workplaces.  We are being prevented from working.  If society wants to reduce the costs of this, try funding BSI Building Standards to reflect autism access, not just wheelchair access.  Swap fluorescent bulbs in the workplace to autism-friendly ones.  Just ask people what they need.  So simple.  Just do it.

I paid just under £1 million in taxes.  I've added it up.  I'm a business owner.  I'm autistic.  I know any number of other autistic people who also pay taxes.  If we assume that Bill G of a well known large software company is autistic, he's paid more into society than most of the rest of the world put together.  So I say the whole 'they cost us money' is generally nonsense.  We need good research, certainly. But it must be based on real questions, not myths.

Societies...caring ones...will want to put in place proper support for those unable to work.  Both for the individual and for their families.  Societies...caring not respond to human need with what is basically eugenics.

Thank you for listening.  Go find some lovely autistic people and get to know us.  It'll help.  A lot.

*Miners used to take a canary in a cage down the mines. The canaries could detect poisonous gases that the miners could not. I'm not recommending gassing any real lives canaries, I hasten to add...