Saturday 14 July 2018

Let's look at why "Autism is the most expensive disability" is untrue.

Piles of coins, increasing in size. Over the top, an arrow pointing upwards.

Updated Oct 20

Are you in charge of paying for autism care services?   Staring forlornly into your budgets, wondering how to pay for the costs?  Read on.  You may save yourself £millions.

I want the best possible lives for all autistic people, and their equally lovely families....and I'm concerned about some of the things I'm seeing out there. 

First, let's start with the realities. 

There's around 2 million autistic people in the UK.  You'll hear it's less than that, but the research shows very clearly indeed that it's about 2 million.  There always have been about 3% autistic people.  We became more 'visible' when society got louder, busier, more demanding, more chaotic.  The Royal College of Psychiatrists writes,  "It is recognised now that most autistic people are adult, do not have an intellectual disability and are likely to be undiagnosed."

Less than 2% of autistic people are in expensive care homes.  I checked. 

The figures you read about the 'cost' of autism usually assume that nearly all of us do not earn money.  So read those with a cynical eye, please.  Autistic led businesses and enterprises pay £millions a year into the economy.  None of that is factored in.  Only the worst examples are factored in.   Odd, isn't it.  Lots of autistic people go on to do similar highly specialised work.  If people will bloomin' well let them.  Some cannot, and of course there need to be good services and support for people who cannot work.  No problem with acknowledging that at all.  And it is certainly true that some parents/carers have to stay at home to look after some autistic people, which means they can't work either.  Again, we need good support around that.  Is that nearly 100% of autistic people and their families?  No.  It isn't.  At all.  Nowhere near.

Let's have a look at the realities:

A good half of autistic people in international surveys (Germany, USA) are in full time paid employment.  You'll read that only 16% are in full time jobs in the UK. Odd, isn't it. Why would autism in the UK be more of an employment 'no', compared to other countries?  An online informal survey of nearly 300 people here shows that 27% were employed full time, 24% part time - and the survey didn't ask about self-employment.  So we can assume that the actual figure is higher.  Ancedotally from 30 years in the Professions, the amount of autistic lawyers, surveyors, accountants, engineers, specialised niche trades, Doctors, Psychiatrists, etc is substantial.  We get a lot approaching us, quietly, after training, to say, "You are the only person I've told".  They're not filling in the charity surveys on employment.  They're hiding, afraid they'll lose their job if they disclose.  We have a lot of autistic people in employment.  Some say that it's better to assume it's a really low figure.  I believe the low figure is inaccurate, and plays into the hands of those who wish to see us as a burden that needs engineering out of the genetic future.  If the Psychiatry paper says we've not found many of the autistic adults, how can we possibly know what they earn, or what they cost?

The figures about 'cost' assume that the 16% full time employment figure is right, and assumes that most of the rest of the autistic population do nothing all day.  Being clear that my view is every autistic person is a person of full worth.  I'll certainly admit that most of us are under-employed, because employers won't hire us, or make it impossible for us to be hired.  That's not an 'autism cost'.  That's the cost of employers not being given basic info on autism, or being appallingly prejudiced.  That's the cost of buildings being fitted with enough noise and lighting hell to stop us working.  That's cheap to fix.

What are most autistic people doing all day?  Examples from the surveys (big numbers surveyed, not just a few mates)

Looking after their families
Doing voluntary work

Supporting one another online
Campaigning for a better and more fair world.
Crafts, arts, music.  A hundred other useful things for society that we don't translate into cash.
Adding to society, in other words.

Is autism a disability that need curing at all costs?  No, it's a permanent brain design difference, bringing strengths as well as challenges caused by a busy noisy social society.

Our brains generally do take in a huge amount of info, compared to other brains.  This can be a good thing, not just a bad thing.

Do most autistic people want a cure?  No, survey after survey shows that most do not want a cure.  Most are happy being autistic.  They would like lives that are adapted so that they cope with the noise and chaos of the surrounding world in better ways. Society insists on making education, healthcare etc into a sensory hell, and we have to navigate it.  Headphones, sunglasses, different clothing, etc can make a big difference.  That's really cheap to achieve for a lot of us, with a small budget from a provider.  Hold that thought....that it's really cheap to achieve for a lot of us ....because it is.  If you know what you're doing.  If you ask the autistic person what helps, after having autism training from autistic people, so you know your subject.  If someone really wants a cure for autism (rather than the pain they're put in by others), fair enough.

So, autism costs society all that money, does it? 

I'll challenge that further.

Look around you right now.  How much technology can you see in your house or office?  Autistic people designed much of that, came up with the ideas for much of it.  Look at the famous art prints on your walls.  Some by autistic artists.  Listening to music?  Some is by autistic musicians.  Driving home in a vehicle, designed and built by autistic people, over a bridge designed by autistic engineers?  You bet that bridge works.  We may have built it.

Your infrastructure relies on autistic people, all day, every day.  Society makes trillions out of autistic minds.  Capable, determined, passionately focused, fair, honest minds of the sort that fill the professional practices across the country.  Autistic lawyers, surveyors, bankers, accountants, doctors, scientists.  Getting it right.  Challenging nonsense.  Stopping salespeople from selling 'snake-oil' to people.

And, every single autistic person -whether able to work or not - whether in a care home because of profound multiple needs or not - is a person of value, a person whose life needs to be free of pain and fear.  A person whose life needs to be honoured and enabled.  

Each family is a family that deserves good support, good time to themselves away from caring responsibilities.  I want to be clear about this, because it's too easy for some to say, "Oh those autistic adults have no idea what being a parent is like".  I'm a parent.  Of an autistic son.  Yes, I do.  No, he wasn't 'mild', and still isn't.  He's fantastic.  Also, an autism consultant, and changing the lives of so many autistic families across the UK.

But, someone realised there was a way to say that there is Big Money in 'fixing' us so we're not autistic any more.  And Big Business likes Big Money. 

So, the myths started.  About cost, about danger, about tragedy.  Who wouldn't pay a fortune to fix a tragedy?  We all like giving to charity, eh?  Fixing those poor children?    It's a fault, a deficit, something's gone 'wrong', you'll be told.  Except it generally isn't, any more than being gay is a fault and a deficit and an opportunity to cure.  Groups tried that, too.  Remember that being gay was in the mental health books, and people made a fortune out of 'gay cure therapies'.  Now those are being banned after the gay people said how much damage those therapies did. Guess what some autism 'therapies' are based on?  Same techniques.  But now too often used on people who can't say that it hurts, or aren't believed when they say it hurts.  

Because autism itself isn't a cost, danger or tragedy, it was important to only showcase people who also had severe learning disabilities, couldn't talk, and displayed extremely problematic behaviours sometimes (actually, mostly extreme distress...).  These were carefully called 'real autistic people'.  And anyone like me who learned to talk was called a liar. Because, in this myth, autistic people who can talk aren't autistic, you see.

Parents were fed this nonsense and (in some cases) actively encouraged to block autistic people from speaking to the other parents.  That way, the cure industry had 100% control of the message, and 100% control of the parents.  

If you are a parent, don't believe the hype about "hand us all your money or your child will be autistic forever".  Yes, they will. Whether you hand over money or not.  Instead, if you must hand over money, ensure that actual autistic specialists receive it.  Or our allies.  People who understand how to actually help your child, because we were once pretty much the same as your child. And we have spent decades in this trade, learning things that help.

Autistic people are not lab rats who exist so that shareholders can make money.

We're people.  Glorious, wonderful people.  

Get to meet us as friends instead.

Thank you for listening.