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 people 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. 

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, but our specialist knowledge can be very good.  Half of us struggle with some 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.  Everyone is a person, to be valued for being themselves.

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’ (perhaps, for some, about our specialised interests…some of the time), many are without good employment and have almost no good friends.  Most struggle to build relationships with non-autistic people, 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 often cannot access healthcare, supermarkets and other essentials for daily living.  Most struggle with access to education, with access to transport.  Many are at great risk of bad outcomes from bullying and violence, from fraud and lies.  We know that so many end up taking their own lives because of the relentless exhaustion and struggle that they are forced to endure.

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 often can’t do that, with non-autistic people.    So we end up accidentally annoying large amount of people, 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 often a world of fear and exhaustion for us allegedly ‘high functioning’ people.  I couldn't use words to communicate with others for the first ten years of my life.  I am sometimes still non-verbal.  I may struggle to cook a simple meal, some days.  Am I 'low functioning'?  I run a company.  Am I 'high functioning'?  I'm just one person.  It varies.

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? (Based on whether they have a high or low IQ?)   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 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 in society.  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.

The picture at the top shows a large number of pebbles of different shapes and colours.  For me, it represents autistic people.  Each one different.  All autistic.  And impossible to divide into just two categories.