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.

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

Have you been given an impressive speech by a group telling you that (e.g.) "Autism is the most expensive disability over a lifetime.  If you pay us a mere £50,000 a year, we can save you a fortune in the long term.  We use our patent evidence-based method and we turn Really Expensive Autistic Patients into much cheaper ones that function." ?  [paraphrased]

It's all very plausible, isn't it.  Quite a few of them will use very attractive salespeople with impressive-sounding qualifications, who use every persuasion skill in the sales book.  You will swoon with enthusiasm, reaching for that pen to sign up.  Perhaps they'll offer that seductive thing, the free course.  "Come on our free course (and we'll convince you that you need our really expensive services, ha ha!)"  If there are autistic people in the room, you'll be able to guarantee that they are only there as walking zoo exhibits, incentivised to give a speech about how their life was terrible, but now it's better.  Stop and think, please.

Did I say that I worked in national sales for years?  And that I've run a national business for years where we have to hunt our income, day in, day out?  I've been on all the sales courses.  I've taken all the 'techniques' training.  I know it when I see it.

Let's debunk each part of it, very carefully.  Because I do 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.  Let me also be clear that some therapists in all areas are good.

I don't want you scammed.  I don't want your autistic chidren/residents in care homes to be treated appallingly so that the scammers can make even more money out of you.  How? By saying, "Gosh, Jonny's displaying challenging behaviour again thanks to [false new reason]. We need to put in extra investigations and a new (e.g.) behaviour management plan at a mere £20,000, and that will solve it.  Yes, we'll take direct debits.  What do you earn?  Just hand it over".  Whilst being clear that good care exists, I've seen some of the scammers actually do things to the residents to cause them pain and distress, just so they can charge you extra money to fix it. They don't want your young person out of that particular too-expensive and inappropriate care home.  If they left the care home, they'd have to close the care home.  There go their jobs.   

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.

Less than 2% of autistic people are in expensive care homes.   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.  My firm pays around £150k in tax a year into the economy and indirectly provides hundreds of jobs in the construction industries across the region.  None of that is factored in.  Only the worst examples are factored in.   Odd, isn't it.  Lots of autistic people can 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 that at all.  And it is certainly true that some parents/carers have to stay at home to look after 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.

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.

The figures about 'cost' assumes that the 16% figure is right, and assumes that the rest of the autistic population do nothing all day apart from draw scribbles or flap.  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.  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.  And got paid peanuts, probably, to use a phrase.  Look at the famous art prints on your walls.  Many 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 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 'snakeoil' 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?  Also, about disability.  It's a fault, a deficit, something's gone 'wrong', you'll be told.  Except it 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 used on people who can't say that it hurts, or aren't believed when they say it hurts.  Genius....well, evil genius. I'll call it that, because I've seen some stuff that I'd count as evil genius.

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.  I've been blocked from a number of behaviour-analyst groups for asking perfectly polite questions.  The moment they realised I was autistic, whooosh, gone.  Odd, isn't it. 100% control of the message is something you see in cults, too.  I leave you that thought.

We now had the perfect hunting ground for some in Big Pharma and some in the Behaviour Industries to make their money.  An opportunity to 'cure' autism, this thing that allegedly costs billions a year for society.  Drugs, genetic engineering, expensive intensive therapies.  Scaremongering amongst parents and carers.  "If you don't act fast, your child will be a dribbling wreck forever! Sign the form, quick!"

It's awful.  And it gets worse.  So much hype has been put into 'cure them at all costs' that we see autistic children being fed bleach to 'cure' them.  We see autistic children being quite literally tortured in care homes as extreme 'behaviour therapy' techniques, and ending up with severe mental health conditions as a result.  Grateful to Government people who are looking at this and getting some of the worst of it banned.  Grateful to fellow autistic people who have campaigned hard for this, too.  At great personal cost, taking on group after group who were scaremongering the parents and throwing hatred at the autistic people.  Meantime, we have made society so bad for autistic people and the scaremongering so effective that our quality of life is often really awful.  That's not 'autism' that did that.

Meantime, also, some parts of the industry have invented their own qualifications.  A fascinating thing to do.  They first thought of all the ways to misrepresent autism, then they thought of ways to pretend they could cure it.  They'd call it something fancy, invent folders of carefully colour coded information to make it look impressive....then set about following autistic people, making impressive-sounding notes, for week after week.  Pretending this was analysing us in useful ways.  Whilst giving themselves their own qualifications in it, set up by their own groups, based on their own evidence.

It usually isn't analysing us in useful ways.

In my view, it's sometimes the biggest money making scam I've ever seen.  So impressive, in fact, that I could almost applaud it.

Except, real people are suffering as a result.
And your budgets are suffering as a result, too.

I go into care homes to assess the care of autistic people of all kinds.  Some, very good.  Others...
I meet the impressive teams with their colour coded folders, who tell me nonsense about the person for an hour or so.
I meet the person.
I note several key things about the person that they had all missed, because they're not autistic and hadn't realised *why* the person was behaving in that way.

We alter the situation for the person.
The person is able to lead a pretty normal life, no longer in pain and distress, and can be put back into better and better settings costing less and less money.

No folders were used.
No weeks of following the person round were needed.
No vast fortune was needed.
Isn't that strange.

20 years of doing that so far.

I'm a professional, working in autism.  
So are my colleagues.
We're autistic.

If you want to save money, never start by listening to some attractive salespeople selling you attractive folders for £50,000 (which is basically what they're doing).  If you want an attractive folder full of nonsense, go to a stationers and get one for £5.

If you want to save money, never start by listening to some representatives from the Big Pharma drugs and genetics companies telling you that for only £millions they can 'cure' autism.  They exist for their shareholders, and are quite open about saying that this is an 'unmet need' that they can exploit to make money for those shareholders.  And ultimately a few more £million for their senior team.  Specifically, your money.

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.