Saturday 2 December 2017

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

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) was going to find out whether more widespread ABA would reduce the cost of autism for society.  Summarised. It claimed 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.  I've put one of the bizarre financial tables from it above.  Apparently autistic adults with an average or higher IQ cost society £14,000 a year in 'hospital costs' and nearly £20,000 a year in 'lost employment'. 

I would say, "You just can't make this nonsense up!", but apparently someone can, and did.

In 2009, we had almost no idea how many people in the UK are autistic.

In 2017, we still didn't know how many people in the UK are autistic.
Somehow, though, we 'just know' the cost to society.


In 2009, we had identified almost none of the autistic females.
In 2009, we had identified very few older adults who had missed diagnosis when younger.
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. refers.

We have no clear idea how many are actually employed, because we force so many employed autistic people to hide.  They're not in any research paper.  Recent surveys suggest the gap between autistic employment statistics and those of other people isn't very great at all.  But it's been made out to be huge.  In fact, some seem to be claiming that all 2 million of us do not work.  How very strange.

7 out of 10 have tried their hardest to work.

Do you know what the barriers nearly always are?  It's the employers, non-autistic staff,  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. Designed to fail me at the start, in other words, as I use a different form of social communication.

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 most likely say that I am rude and unco-operative, even though I'm not.    Just socialising differently.

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'. Then we add in the new research showing that nearly all autistic people are bullied at work.  Mmm.

I co-run two businesses and a charity.  Many autistic people I know are employed, many in the professions of law, accounting, surveying, healthcare, etc.  Some are not.  All are valued.  All contribute, whether financially or vocationally, or as friends and fellow travellers on life's journey.

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.

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

We especially need to stop making up figures to prove this alleged burden.

Think differently.  Learn from us.  We're fantastic people.  Why not try getting to know us instead?

Thank you for listening.

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