Sunday, 20 March 2016

16 years of lost life: Autism and How Systems Fail Us

The average autistic adult will die 16 years earlier than non-autistic people.

The report, and the science paper, are not easy reading.  They won't be easy reading for some Professionals who have told us to 'just pull ourselves together'. 

They won't be easy reading for some in some faith groups who have told us we're just a nuisance. 
They won't be easy reading for some education professionals who assume that they are wasting precious resources on some silly behavioural thing. 
They won't be easy reading for some partners of autistic adults, who assume that their partner is 'just being awkward'. 
Nor for some Doctors who treat our needs as irrelevant afterthoughts.

And, most of all, they won't be easy reading for some in charge of disability benefits, who see autism and its needs as deserving nothing.  "Doesn't fit into the criteria we invented - therefore there is no need".  People who invent systems so buildings so inaccessible...that many autistic people cannot begin to even apply for the benefits.

16 years of lost life.

16 years....

Autistic people who, in absolute despair, commit suicide in numbers vastly greater than non-autistic people.
Autistic people who, often in great pain, cannot access healthcare, and die from preventable illness.
Autistic people who are misdiagnosed with psychiatric conditions we don't have, and given inappropriate medications.   It's not a mental health condition.  Though, goodness me, enough years of pain and loneliness and bullying, and many end up with anxiety and depression anyway.
Autistic people who cannot access supermarkets safely, thanks to sensory pain, to buy appropriate foods, even if they can afford to buy them.
Autistic people who are left without shelter, warmth, friendship, relationships and love, by a society that too often wants to see autism as 'nothing but an attitude problem'.  Or sometimes as a joke.  Or a 'danger'.  The reality is that the vast majority of us are victims of crime, not criminals.
Autistic people who are left without employment, by employers who don't want to bother with cheap, simple ways to let us access their buildings.  The poverty that results.

Goodness me, what have we done?

What have we done to these most wonderful, quirky, honest, loyal individuals?  What have we done to our friends?  To people often bringing such dedication, such passionate carefulness to work and life?

I have lost track of how much dismissal I've encountered over the years, as a professional working with autism.  How much belittling of need.  How much desire to disbelieve whatever we say, and minimise what we say is important.  "Oh the only thing really important is your social skills.  You must mimic our social skill set at all times".  Really?
How much talking over us, and leaving us out of discussions... and assuming that people with an MA in the subject from 20 years ago know more than actual autistic experts.

And here we have the end result.  All that non-autistic expertise, decades...and they have only just discovered that we were dying on average 16 years too soon.

Where are the older autistic people, I'm often asked? 

They are mostly dead, it seems.

I suggest we do better.  Together.  Listening together.  Working together,  Respecting one another, together.

Because no more autistic lives should be cut short, after brutal and cruel years of loneliness, bullying and poverty

No more.