Saturday, 2 December 2017

"Autism Costs Society £Billions" Or does it? Let's look.

Today, I read the NHS research project paper for Applied Behaviour Analysis (ABA).  "Intensive behavioural interventions based on applied behaviour analysis (ABA) for young children with Autism spectrum disorder: A systematic review and cost-effectiveness analysis"  is the title of the project.

The project (2017) is going to find out whether more widespread ABA will reduce the cost of autism for society, it says.  Summarised. It claims that this cost is £32 billion for the UK. £1.5 million per person, it says.  It links to the paper here by Knapp et al, 2009.  The actual figures in the paper are lower than this, curiously.  But, let's assume we start with the £32 billion.

In 2009, we had almost no idea how many people in the UK are autistic.
In 2017, we still don't know how many people in the UK are autistic.
Somehow, though, we 'just know' that all of them cost an average of £1.5 million to society.

Really?

In 2009, we had identified almost none of the autistic females.
In 2009, we had identified very few older adults who had missed diagnosis.
In 2009, we had identified almost no autistic People of Colour, mistaking autistic behaviours for cultural ones in many instances.
In 2009, we had identified almost none of the extravert autistic people, imagining that it was a condition involving extreme introversion and a fondness for libraries.
In 2009, we thought that around half of autistic people had a learning disability.  They don't. Few do.  http://bjp.rcpsych.org/content/bjprcpsych/early/2016/06/27/bjp.bp.115.174649.full.pdf refers.

In other words, in 2009, we had failed to discover nearly all the autistic people.  We imagined (incorrectly) that vast numbers of autistic people had a low IQ , could barely work and needed lifetime high support.  We had no idea who was working and who was not.  Not a clue between us.  

We still don't, because there's still no proper research.

I have pondered my 20 years in this field of work.  I work with autistic professionals across the UK.  I am blessed with autistic family members, and autistic friends.  I am delighted to work with autistic colleagues and be on social media with thousand upon thousand of autistic individuals.  Some verbal, some not.  Some with a learning disability as well.  Some not.  Most do not have a learning disability, by the way   - the statistic for that is way out of date also.

Of these, nearly all have tried their hardest to work.

Do you know what the barriers nearly always are?  It's the employers and the people who build and maintain the buildings.

It's not 'the autism'.

If I go to an interview, I'm expected to pass a social skills test. The interview. I cannot.  I would need the employer to hire me based on how good I am at the job.  They don't.  The social skills test is, however, how most people are hired.  Autistic people will fall over that proverbial hurdle nearly every time. "I am sorry to say that someone else had, er, more experience than you, honest guv", to summarise the rejection letters most get.

If I am then employed, I am almost certainly expected to socialise and work exactly like a non-autistic person, even if it destroys my creativity and ability to concentrate (i.e. the very things the job needs).  My appraisals will say that I am rude and unco-operative, even though I'm not.  I'm misinterpreted by non-autistic bosses, in other words.  I'm denied promotions and probably sacked for non-performance of some vague kind.  Or I am perhaps treated as a zoo exhibit and pulled out in front of audiences.  "Oh look, we've trained one to stack shelves.  Clap, everybody.  Isn't it encouraging!"  

If I manage to stay in the building, I'm expected to work under flickering fluorescent lighting (because it would cost 'too much' to replace one bulb with another, allegedly).  I'm expected to be deafened by noise, also.  Perhaps nauseated by intense smell.  Asking for any form of accommodation is seem as 'a cost', even if the end result is huge productivity and profit from me.

These are the usual barriers to economic success.  None of them are 'my autism'.

Yes, there are some autistic people who cannot work.
There are also some women who cannot work.
There are also some men who cannot work.
There are also some people with size nine feet who cannot work.

For those who cannot work, we absolutely do need good support, for them and for those that may care for them.  Proper funding.  Really good outcomes.  I and others strive for this in so much that we do, ensuring that each autistic individuals is able to lead a good life, with carers who are supported rather than exhausted.

But...an example.  Think about this.  Women earn, on average, less than men. Some women are in care homes, costing society huge sums.   Imagine that we responded to this by saying, "This is a tragedy for society.  We need to train the women to be male, so that this terrible cost for society is lessened".  Do you think that would help?

No, we need to put in place a working system that allows women to earn the same as men for the same work to the same standard.  We also need to base our arguments on something other than the equivalent of imagining that some vast number of women are in care homes, costing society a fortune.  Why this is acceptable for autism is not yet clear to me.

We do not run intensive behavioural therapies for women to turn them into men.  Do we?

We do not, I respectfully suggest, need to 'solve' this alleged financial crisis by running such intensive behavioural therapies for autistic people... to turn them into alleged-non-autistic ones, so that they can 'earn more'.  I'm mindful of the forthcoming research into such behavioural therapies and possible links to PTSD.

How did I solve the situation re money?  I set up my own business.  It's run for nearly 20 years now.  It pays a huge sum of money back into the economy in taxes, and benefits society in all sorts of other ways.  People like me are not in the data, because no-one has collected any.

My friends and colleagues, my family and contacts, nearly all make a contribution to society. Some work in very high paid jobs that they have somehow found a way to keep going.   Some have worked for decades in lower paid jobs, where they are allowed to -  doing fantastic work.  Some work tirelessly for charities and faith groups.  Some are carers for family, providing invaluable support for society by doing so.  Some are not able to work, but provide research, data, friendship, fellowship, humour, art, sculpture, music, poetry, books, articles. 

 A very small number are in care homes.  Many of these are care homes already using ABA or its related 'therapies' on them, and finding that the person is still in the care home afterwards.  Often, in fact, getting worse.  I work with care homes. I see it first hand.  I'm entirely unsure how ABA is helping them earn money.

We need to stop describing autistic people as a 'burden' to society.  Mindful of the recent Autistica research into the very high suicide rates for autistic people, and the emerging data around how constant negativity about us may cause this.

We need to stop thinking that 'autistic conversion therapy' is an answer, where 'gay conversion therapy' turned out to be a disaster.  I put it to my fellow professionals that ABA is going to turn out to be every bit as big as disaster as 'gay conversion therapy', and that we need to rethink our views of ABA rather fast.

If organisations wants to do this piece of research, I would start with...
A respectful use of language.  Nearly all autistic people want to be called autistic people, not 'person with ASD'.   
A proper balance on the expert panel, not just two unnamed autistic individuals amongst a roomful of non-autistic Professionals.  We have so many fantastic autistic professionals.  Use them.
A proper evaluation of whether this is even the right question to be asking.
A proper review of the underlying data on that project, starting with reality, not myths from 2009.
An engagement with employers, in a wider piece of work - making sure that they make it possible for autistic people to work whilst autistic.  Because making us pretend that we're not is not actually a strategy. It's a disaster, in my professional viewpoint.  For society and for the individuals.

Think differently.  Learn from us.  We're fantastic people and we are fed up with being described as burdens.

Thank you for listening.



The picture shows piles of money, and a red arrow pointing upwards.