Friday 20 November 2015

Flawed research on autism

20 years working in the world of autism.  The honour of working with autistic family, friends, colleagues nationally and internationally.  Wonderful, caring, quirky, dedicated, honest people of the most extraordinary integrity.

But still we have books being marketed which portray us in horrific ways, based on flawed research from the 1990s or early 2000s.

Back then, they had found hardly any autistic adults at all.

There has been no path to diagnosis for most of us until the last few years.  There are huge waiting lists for diagnosis.  We have still not found everyone. We are only just realising that about half of autistic people are female.

In, say, 2003, there were perhaps 1 in 50 autistic people discovered.  The only ones who had been discovered were those whose behaviour was so extraordinary that they had been totally outrageously obvious. Especially the women who were discovered back then.  So extraordinary different from 'normal autism' that they actually got noticed.   Thing is, autism is an invisible disability.  You can't see it.  That's how unremarkable it is, normally.

So, who got diagnosed, back in 2003?  Often people with multiple conditions, often with mental health conditions or personality disorders as well as autism. Perhaps those who weren't autistic at all, but had sociopathic conditions.  It was common back them to imagine that autistic people were incapable of love and empathy.  That's been debunked, thoroughly.  Thus, we found only the outliers, those who were autistic-and-something-else.

An example?  A brilliant idea, back in the early 2000s, of asking mostly people who were in for marriage guidance whether their autistic partner was well behaved.

Guess what.
Some of them sometimes weren't.
That's why they were in marriage guidance counselling.

And still....still, we have people who are reading and believing that such research from that tiny sample in ancient times applies to all autistic people discovered since then.

When that happens, people are not reading about the wonderful gentle people who are the vast majority.  Not the majority of us whose behaviour never gets more extreme than going non-verbal and leaving a room quietly. Not the loving partners, the caring parents, the fab quirky friends.  Just something based on that kind of ancient bit of flawed research.

This is 2015.  We know better.  There are so many who are truly ashamed that they produced such shocking things about the supposed 'normal' behaviour of autistic adults.

All we can do, as autistic responsible gentle, caring individuals is implore people to check what they are offering for sale.  Check whether it matches current research.  And if it does not, please pull it off your shelves.  Real people get hurt with this stuff. They lose their jobs. They lose the trust of others. They live lonely, awful lives. They are pre-judged and pre-hated through people reading this stuff.  It's not OK.  It's really not OK.

Thank you for listening.  And for caring enough to read this blog, and those of so many other exhausted, deeply loving autistic folk.