Saturday 9 January 2016

Sensory Difference is Autism?

Good to see science catching up with what autistic people have been saying for years.

"...Because sensory information forms the building blocks for higher-order social and cognitive functions, we argue that sensory processing is not only an additional piece of the puzzle, but rather a critical cornerstone for characterizing and understanding autism".

In other words, they think autism is about sensory differences.  Sensory differences stop us socialising.  Simple, really.

I had an interesting email from a colleague at a large autism charity this week. My colleague told me that I was one of the most severely-affected people, on sensory difficulties.  I'm not.  If I think about the very large number of autistic people who share my life - as family, friends and colleagues - I'm about average.  I can think of many who are far more severely affected than I am.  I'm very good at explaining sensory stuff, though.  Perhaps it's me explaining it that has been misidentified as 'Oh it's just Ann being oversensitive'?  Who knows.

And this has been the difficulty all along.  This thing where if one of us explains sensory difficulties, we're assumed to be really badly affected, not like all the others who can cope just fine.  Allegedly.   Well, no, they can't cope with the poor sensory stuff either.  Each person will have a different set of worst-nightmares on sensory stuff, of course.

The thing is, it took me until I was in my 40s to work out what was wrong.  My ability to work out what my body was telling me was very poor.  I would be unable to communicate well in some rooms and spaces.  I would feel hugely ill in supermarkets.  I was struggling to cope in any internal space lit by fluorescent lighting. And not once did I link how I was feeling/responding to what environment I was in.  That is the difficulty we have with taking fairly young autistic folk as the basis for nearly every study... and using that data to say for certain, "No, this sensory stuff is a side-show; it's not really relevant.  We should focus on the Real Stuff, you know - the stuff that is Actually Autism.  The bad behaviour and the refusal to communicate with others.  That's Real Autism.  Sensory stuff?  Ach, that's just people like Ann being at the 'severe end'. "  To paraphrase quite a few conversations I've overheard during the last few years.

Look, dear lovely autistic professionals.  I love you all dearly.  No, truly I do.  But some of you are not listening properly to this.  I put it to you - based on the evidence - that the reason autism has become so much more visible in society is because society has become a sensory hell.   The reason autistic young people can't cope in classrooms any more is because they have become a sensory hell.  The reason we have only 15% of autistic adults in full time employment is because workplaces have become a sensory hell.

And we need to understand this.  We need to stop asking only very young people who haven't worked out  their sensory experiences yet.  We need to start asking a whole range of ages.  In proper structured questionnaires and tests.  No, not under fluorescent lighting, thanks.

We also need to put good money into things like the British Standards Institute new work on buildings and autism.  If we can't get the built environment sorted for us, we're not going to be productive.  Blaming it on our 'poor attitude' is not appropriate.  If you were in sensory distress all day, your attitude would be pretty poor, I can tell you that.  Try it and see.  Easy to replicate it. 

So, we need to rethink autism.  We need to start with, "Well, if people can barely see and hear in most places, and are exhausted from the pain of it, how do they communicate effectively?".   Then we can start solving nearly all of this.