Monday, 22 December 2014

Autism - high versus low? Gee, no.


Extraordinary ideas happened before we understood more about autism.  One of the biggest ideas was that we could all fit into two neat sorts of autism; high functioning, and low functioning.  Depending on whether we could say some sentences and pass a standard IQ test, more or less.

We then had Autism Wars, with some parents clamouring to tell us that their child was Low Functioning and therefore nothing like autistic adults who can talk.  Those adults must be High Functioning, since they had speech, they said.  Lots of people got hurt in those debates.  We still see some happening.  Parents then wonder why autistic adults rarely help to explain about autism, to help those parents.
What I say here is a generalisation, since we’re all a bit different.  We know from the brain science that autism is about our brains being differently connected.  Wiring connects up in unusual ways.  The ‘common sense’ bit of the brain doesn’t function too well for most of us.  Half of us struggle with everyday tasks, whether we can speak or not.  Lots of the ‘low functioning’ people got really offended at being described like that.  Well, would you like being called ‘low functioning’?  The mistake was to think that they could not understand what was being said.  Most can.  In fact, now we have technology like iPads to help communication, it turns out that many of the ‘low functioning’ autistic folk are very intelligent.

We know that autistic brains seem to ‘overheat’ when under sensory and social overload, and need about an hour and a half of quiet to be able to cool down again (literally). We’re seeing this on the brain scans.  More research being done.  We know meltdowns/shutdowns may be connected to this – so autism may be more like epilepsy than temper tantrums or refusal to communicate.  Autistic folk have been blamed for so much that is totally out of our control, alas.
We also know that most of the ‘high functioning’ adults have profound difficulties with some areas of life.  We know that despite ‘being able to talk’ (about our specialised interests…), most are without good employment and have almost no good friends.  Most struggle to build relationships, and struggle to access human rights.  Most struggle to fill in and send off complex forms for benefits.  Some starve to death as a result, right here in the UK.  Most struggle to access noisy/busy sensory-overloading buildings, so cannot access healthcare, supermarkets and other essentials for daily living.  Most struggle with education, with transport.  Many are at great risk of bad outcomes from bullying and violence, from fraud and being conned into breaking laws for others. ("Go into that shop to get me that bottle of alcohol - no, you don't have to pay, it's free today...I'll be your friend if you do", etc. So easy to do with very literal people who expect others to say what's true).

So much for ‘high functioning’. 
Language is no good if you can’t use the right words, at the right time, to convey the right meaning, to the right person, in the right way, about the right things.  With the right eye contact and face expression and body language.  And we can’t.  Too much of our brain is super-fast on data and facts.  And super-slow on working out words for emotions at the right time.  We can feel the emotions...but the words won't arrive on time.  We can’t use or see body language very well.  We cannot pick out just one voice in a crowd.  Those bits of our brains are wired differently.  So we end up accidentally annoying everyone instead of communicating well.  We then get no help, and a lot of very angry people round us….whilst we sit in the middle, trying desperately to say the right thing, and failing.  It’s a world of fear and exhaustion for us ‘high functioning’ people.

Relationships?  Fail.  Job?  Nope.  Friendships?  No way.  Everything depends on timely, well phrased communication.  Just knowing long sentences isn’t it.
And…who decided there should only be two sorts in everyday autism descriptions?  Do they go around assessing people with visual impairment and deciding they can only be High Functioning Blind and Low Functioning Blind?  It’s a sliding scale of how much people can see, and different sorts of blindness.  So it is with autism.  What about wheelchair users?  Are they high functioning if they can speak, and low functioning if they can’t?  Of course not.   They're all wheelchair users with their own individual set of needs.  It’s baffling that this has happened for a brain connection condition like autism.

So, less of the insulting or misleading labels please.  None of us are ‘low functioning’.  None of us are ‘high functioning’ either.  All of us have areas of life in which we really really struggle.   Some have an additional learning disability or other disabilities that make life super-challenging.  I do.  I'm also faceblind, have arthritis, am recovering from cancer treatment.... etc.  Of course it’s more challenging if anyone, anywhere, has lots of disabilities at once.   That doesn’t make their autism ‘low functioning’.  Let’s work together to describe each person’s needs accurately, and get the right support to them and those around them.  That’s the right result.