Tuesday, 25 April 2017

So who counts as 'Autistic Enough'?

Yet again, this week, the international autism communities have seen a parent claiming they know what 'real autism' is.  A parent, this time, who is head of an autism charity.  Not in the UK.

They have invented a picture to go with it.   I have disguised it here, to respect the privacy and lives of the people that the original author put on it.  But it gives you some idea of the shape of it.  

They liberated internet photos of a lot of well known autistic people.  Then, presumably without their consent, allocated them a place on the graph.  Each person got rated as A1 to E5, based on "social-adaptive functioning" and "intellectual disability".  The A1 people (top left) had no intellectual disability and were declared pretty much normal in their 'social adaptive behaviour'. "Borderline".  The author simply guessed whether they had good 'social-adaptive functioning' and put anyone who could talk into that category, as far as I can see.  The E5 people (bottom right) were declared intellectually disabled and aggressive and unable to do 'social adaptive' stuff.  Hmm.  Look at the graph.  Which categories would a newcomer to autism think were the most common?

I've added a red circle around nearly all of the photos.  The purpose of this will become clear in a minute or two.

Let's have another look at this. A different graph.  This one, mine.  It's only an illustration.  It doesn't represent specific people.  Suppose we take, say, 1000 autistic people.    We create a graph, showing how strongly they have a couple of autistic characteristics on a particular testing day.    Every single dot on the graph is an autistic person.  They're all autistic.  I can't stress this enough.
But...supposing the ones who are given a green dot are ones who also happen to have an intellectual disability.

The author has , apparently, decided that only the people with the intellectual disability are properly autistic.  The rest, only borderline.  I've put in a red circle, below, picking out some of the autistic people who have an intellectual disability as well.  I'm going to declare those to be Properly Autistic.  Quite randomly.  The rest?  I'm going to declare them to be borderline autistic, also randomly.  Why not.   It doesn't have to be based on anything other than my whim, after all.

Anyone see the problem with this?   Yes, it's nonsense.  They're all autistic.

Look again at the first picture.  That red circle is all the autistic people who (the author believes) also have an intellectual disability.  Look at how many autistic people she has decided fit in that category.  Nearly everyone who is autistic, it seems.  Look at my chart. That's nearer the reality, in that red circle  No, truly.  I did some background research on this.

Intellectual disability is not autism.  It's not part of the criteria for diagnosing autism.  It is a separate thing.  And people who also have an intellectual disability are people, fabulous, deserving of every bit of respect and love that is due to every person on the planet.  I don't want anyone analysed and put into a 'category E5' or any other category. We're not categories.  We're humans.  Would you want to be declared an E5 human?  By a passing parent?

As for social-adaptive functioning, that's not even a term used for autism.  Those are two separate things.  Social functioning measures how well we can copy and interpret non-autistic behaviours. Most of us are great at copying and interpreting autistic behaviours. It's a different language, not a deficit.   What if we had a chart to show how well non-autistic people can copy and read our autistic language? it would declare pretty much all of them as 'deficient'.  Should we do that instead?  Indeed not.  It would be disrespectful.

Adaptive functioning?  Gee, I'm going to have to guess here.  Is it to do with life skills?  That depends, moment to moment, for nearly all of us.  I can do a lot of things just fine.  Others not.  But the things I can do just fine?  I can't do them all the time.  It depends on circumstances.   It's a variable.  Some days, I'd score on the right of the author's weird graph.  Other days, the left.  Others, in the middle.  It's meaningless.  Which skill are we even talking about?  I might be able to talk one day, but not the next.  I might be able to cook a meal on Monday, but be completely unable to do so on Wednesday.  Put that on a chart.  Go on, have a go.  You can't, eh?  Quite.

We need to move away from thinking we have the right to liberate photos of people we don't even know, slap them on a graph, and declare how autistic they really are.  Based on a category that isn't even autism.

It's disrespectful.  It's inaccurate.  It's unprofessional.  It's misleading.  It's harmful.

I hope that's clear.

Thank you for listening.