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.  It's as strange as dividing the Deaf community into 'high functioning Deaf' with a normal IQ, or 'low functioning Deaf' with a lower IQ, and declaring these are different forms of Deafness.  Clearly not.

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/working in different ways.  

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 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.

Almost every part of this is avoidable or capable of being lessened, if society understood autism better and enabled autistic people to thrive.

So much for ‘high functioning’. 
 I couldn't use spoken words to communicate socially with others for the first ten years of my life.  I am sometimes still non-speaking.  I may struggle to cook a simple meal, some days.  Yet I can run a company - with a fabulous team who understand autism well.  Am I 'low functioning'?  Am I 'high functioning'?  I'm just one person.  It varies.

Most people aren't high or low functioning.  They're somewhere in the middle.  That's how life is.

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 may 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

Let’s work together to describe each person’s support, sensory and social 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.