Sunday, 27 September 2015

Really naughty behaviour around autism

There is a huge organisation elsewhere in the world which alleges to act for autistic people. 

It has a lot of very very wealthy donors, and thus a lot of cash.

With that cash, it buys the support of some top class 'spin doctors'.

Recently,  one such 'spin doctor', a paid professional working in the autism-compliance-training field, wrote an article for a large online news provider.

In the article, they allege that only 1 in 30 of us females on the autism spectrum are at the 'higher functioning' end, and that the other 29 out of 30 are basically violent out of control nightmares who spend our days self-harming.  Do we really?  I looked around at my 50+ female autistic friends of all ages and abilities, and noted us going peacefully about everyday life.  Most odd.

So, all very interesting.  If only it were based on evidence.  The statistic is the other way round.

The author then alleges that we use violence to get stuff.  No, we don't.  Autism is not a condition that causes manipulative violence.  Violence is no part of the diagnostic list at all.  Some autistic children have other co-occurring conditions that raise the likelihood of defiance.  Occasionally some other conditions are misdiagnosed as autism, but are more aligned with antisocial behaviour.    A small proportion of autistic people will have 'meltdowns' caused by an internal brain wiring 'epileptic incident', in which they are temporarily out of control.  That behaviour is not designed to get something.  Well, it may be designed to escape from intense pain and fear.  That is not a bad thing, though.  Most of us do not show any defiant or violent behaviour at all.  So, where did that and the other strange statistics come from, one wonders.   

The author also alleges that their own child is nothing like the sorts of children who perform on stage. Those aren't 'real autism', in other words.  Their child is the typical sort of autism.  In one of their articles about their child (who can read, write and talk), they apologise to teachers for having to endure their child and their appalling conduct.  They talk in another about having to fear their child.  So, we are left with the idea that this is a child who is not able to communicate, who is raging out of control night and day.

Except, in another article, they talk about their child starring in a play. Would this be the child who is nothing like the ones who perform on stage, then?  Another article talks about the long conversations that the author and their child have about their games and computers.

There's more that concerns me about this 'expert'.  Another of their articles says that autistic people can appear to communicate, but in fact we're not doing so.  That's fascinating.  Are we not?  Really?

Spin only gets you so far.  Sooner or later, people start querying the wild statistics and the non-matching facts.

If the media are hiring people who are paid by an organisation with a track history of abusive behaviour to autistic people, they will get that kind of article.

It is best to speak to professionals who are respectful.  People who do not put their child in the media and speak about them in the most appalling ways.    People with lived experience of autism, who can explain the realities instead of the myths.

It's really not OK to say dreadful things about your child in public.  That fine young man will soon find those articles...and goodness me, whatever will they think about themselves.  And about that parent for saying that, in front of the world.

Parents, please question articles you read which demonise autism.  Ones which try to convince you that unless you part with a huge sum of money for intensive therapy, your child will be a dribbling mess in a corner, for life.

I didn't speak in any conventional way until I was ten.  I rocked in a corner and would sit and spin the wheels of toy cars for hours.  I now run a national Professional Practice.   I had no expensive training or therapy at all.  Nor did my own son, who is autistic (not Aspergers).  The most amazing and fantastic young man.  I could not be more proud of who he is and what he has achieved in his life.    In fact, none of the autistic people with whom I share life have had expensive therapies.  We'd love a world with a sensory environment that didn't hurt, though.  And people who treated us with respect and love, giving us accurate information and timescales, so we can feel safe and confident.

For all our fine young people, let us find ways to look at truth, not spin.