Sunday, 31 January 2016

Autism Charities: Pick a good one

There are so many autism charities.  Often, people want to support one.  But which?
All will tell you that they are doing wonderful work to support autistic people.
All will have pretty pictures on the wall to show people.
All will say fine things, often in front of the media.

But...which make a difference, and which may make it worse for us?

Autism is one of the least understood human differences in the world.  For the last few decades, we were misunderstood by specialists.  The USA diagnostic criteria has only just been updated.  It has only just realised what autism is.  And what it isn't.
It never was a 'behavioural condition' involving violence and self-harm.  It never was just boys.  It never was a lack of speech.  It never was a low IQ.  None of those things ever were 'autism'. 

I'll let you think about that, first.  Because it's important that you know what autism is, and isn't.  That will guide which charity you support.

Autism is where brains take in too much information from our senses, too fast for us to process it all. Generalising, we are extreme specialists.  Our ability to focus and our passionate interests make us experts in many things.  We are to detect the tiniest changes in the environment.  Able to hear the tiniest background sounds.  Ten time more accurate than others.  Very literal and precise, very keen on social justice.  Quite often unable to recognise people from their faces, and unable to spot body language/face expression fast in crowds.  A whole range of IQs and personalities.  A whole range of famous and ordinary people in society around us.  1 in 30 of the population.  

All that extra sensory processing?  It leaves us almost literally blind and deaf in busy, noisy places.  It means our brain wiring overheats in noisy social conversations, which is why we withdraw to somewhere to let it cool again.  This isn't a mental illness or an incompetence, a disease or a disaster. it's a different way of being human.  Every bit as human as everyone else.

Those who also have a learning disability, a behavioural condition, mental health conditions or otherwise will of course have a tougher time in life than those who are solely autistic.  Some will need supported living, for life.  Most of us do not. 

If you have a friend who is a wheelchair user.  You'd agree that they are going to find some things harder, yes?  Like going up stairs.  Would you insist that they are only 'mildly affected', if they had a normal IQ and could speak?  Would that make sense?  Nope.  Same with autism.  Or being Blind.  Or having a speech and language condition.  We don't insist on it only counting if there are multiple differences/disabilities/conditions at once.  We shouldn't with autism. 

Here's your checklist for spotting good autism charities.

The voices of autistic people are enabled and everywhere.  Not statements about how we 'put the needs of autistic people first', said by non-autistic people, defined by non-autistic people.     I mean actual autistic voices.  And by voices I mean communication.  Almost every autistic person can communicate.  Especially with modern technology available. You get to meet and talk to autistic people, in a relaxed way.  You are not told that it would 'upset them'.  I'm going to explain this a bit; yes, it can be very eek for us if people arrive unexpectedly in our personal space.  But a chance to explain our lives to others - done in a way we can access, that's great.  I want to see charities supporting ways to enable us to do just that.

Watch out for ones where most of the 'good outcomes' involve other people not being inconvenienced.  Or where autistic people are rewarded over and over again for Not Being Autistic.  Would you like to be rewarded for Not Being Female, or Not Being Male?  Surprisingly similar.

Autistic people lead or co-lead.  With real power.  Power over what happens, and how. Yes, some need support in that role.  But where are the autistic leaders?  Trustees?  Management?  Specialists?  Where are they?  Did you meet them?

The training is done for the organisation by autistic trainers, perhaps with others - but the input and training is autism-enabling.  Where autistic people have contributed, that is made clear and their work is paid for and respected.  There is none of this, "We will let you work for free or for a pittance, and you should feel grateful for the opportunity" stuff.  That's not helpful. That's abusive to use us as slave labour.  Sorry, but it is.

We are not portrayed as tragedies.  Or inspirations.  Nor mostly as people we 'help' to stay safe from hurting other people.  In all the research we have, autistic people are less likely to harm others than anyone else.  Most of us are victims of violence and abuse, though.  A few autistic people will go into a meltdown if placed in intense pain.  So would you.  Stopping the intense pain works, for you, and for us.

The charity is enabling people to access the things they want to access.  No, just not a trip to the zoo. As nice as it is for anyone to do that, autistic or not.  I mean jobs, money, skills, relationships, holidays with people we want to holiday with. Hobbies that aren't just 'Here's a painting set - we'll put the art on the wall afterwards for the nice donors to see'.   I don't want to see charities listing, "Jonny unpacks the communal dishwasher, as a volunteer" as an applause-worthy aim for that person's life.    Would you want that as your ambition?  Well, we're people too.  Just like you, but with an autism brain design.

What 'therapies' are used?  Check this carefully.  Watch for ones that use 'positive behaviour support' and 'applied behaviour analysis' (PBS and ABA)  Some use adapted and reasonable forms of these.  I work with some very nice ABA practitioners who are marvellously supportive and enabling, because they adapted the principles.  Others will not even speak to me, because they don't actually speak to the 'clients' unless in a therapeutic setting.  Apparently. That's odd, because I have just under 1000 clients of my own, as MD of a firm of Chartered Surveyors.  And I talk to everyone as equals.  43% of ABA practitioners in a study believed that physical punishment, including electric shocks, can be a good way to treat us.  Really?  Most believe that taking our favourite things away, and using them as a form of blackmail to get us to be non-autistic, is the way to go.   That is the core of pure ABA 'therapy'.  Teaching us that autism is bad.  And analysing how to control everything we do.  Whilst making it sound like we benefit from that.   Hmm.

Watch carefully for charities that say the 'problem behaviour' includes repetitive movement.  And, if queried, pretend that all repetitive behaviour involves self-harm....therefore it's a good thing.  And say the 'residents' are pleased that they are prevented from doing it any more.   All human beings use repetitive behaviour as a coping method.  Autistic people do too.  We're no more likely to use self-harm than you are, if placed in equivalent situations.  Taking away a way of coping is not OK.  There's science behind why autistic people use repetitive behaviours (called 'stimming'), for example flapping or rocking.  Ask us why we do it.  Don't just assume it's a sign that we are broken and need fixing or pitying. It's our equivalent of British Sign Language, or our equivalent of a Blind person using a walking cane.  Taking most of that away only helps people feel less uncomfortable round us.  That's not an outcome for us.  That's an outcome for the powerful.

And watch out for big PR.  If a charity has £thousands to spend on hiring a big venue with celebrities, dignitaries, etc...ask yourself how accessible that is for autistic people.  We can't access huge events under fluorescent lighting, without it hurting like heck.   Where are the autistic organisers/co-organisers?  Where are the autistic speakers?  People with something significant to say, not just, "My name is Sam and I am happy to work for free, stacking shelves".  No, Sam is being exploited.  And is naïve enough to believe this is a good thing. 

Stand up for Sam.  Get Sam's voice heard.  She'd like the same things you would.

That should start you off with your checklist.  Roll up your sleeves and get asking some really tough questions.   And check those answers out.  Spotted one with not a single autistic voice being heard?  Move away.