Sunday 28 August 2016

Autism: Neurodiversity versus "Mental Illness"

Quite often, I'll say to someone, "What are you doing about autism inclusion in your group?", and they will respond by saying, "Our mental health team is doing fantastic work?"

It's very good that people have a mental health team.  It's very good that they are doing fantastic work.  But, that's not autism.

It's a bit like asking, "What does your group do about women's rights?" and being told, "We have a wonderful mental health team".   Would that feel comfortable?  Stop for a moment, if you will, and consider how a woman would feel if that was your first response to her.  Yes, some women have mental health difficulties.  Some men do.  But being a woman is not a mental health condition.

Being autistic is not a mental health condition, or a disease.  It's a neurodiversity.  We are born autistic.  We die autistic.  We're autistic all of the time.

Neurodiversity is quite a new word for a number of people.

It means that human beings come with different 'designs' of brain, for different purposes.  Brains that have their own unique strengths.
Brains that are not broken, in need of fixing, something to be pitied or prayed for
Brains that are genuinely and permanently different.

This is a shame for the pharmaceutical industry, of course, who are hoping to make a fortune out of 'curing' autistic people. But I can't help them, there.  One assumes they won't be trying to find a pill to cure people of being female, or of a particular ethnicity.  Same principle. 

I get a lot of very upset people at this point, who say, "...but my child is really suffering.  Are you telling me that they do not need a cure? You unempathetic clueless monster of a professional!". (Or words to that general effect...)

No, I haven't said, "Your child must suffer", at all.  Nor have I said, "You must suffer as parents".  The last thing I want is any suffering.  At all.  For anyone.

The work I and other autistic professionals do is largely around prevention of suffering for everyone. 

But it doesn't involve a cure for autism.

Let me explain.

Most autistic people start off just autistic.  A brain design with considerable strengths.  Generalising (because each person is different):  Honesty, integrity, morality, diligence, passionate about learning.  Amazing senses that can detect the tiniest changes, e.g. food going bad, the first sniff of smoke from a fire.

Are we agreed so far that this is a good thing for society, to have nearly two million people in the UK who are determined to be fair and moral?  People who are life's extreme specialists?  People who are able to detect danger before others can?

OK.  Right now, you're in the zone of autism acceptance and understanding.  That's our starting point.  I know there will be a few who are desperate to say, "...but...!"   Just read on...

Autism is a sensory processing difference.  Our brains take in too much information, all at once, and cannot filter it out properly.  It makes us hyper-aware of things that others can 'tune out'.  It is wonderful in quiet places, in nature, in our specialist hobbies and in good environments.  It gets exhausting in busy, noisy places where we cannot see or hear properly.  We struggle to process social information from others - their body language, their face expressions...and work out what it means fast enough.  It leads to awful misunderstandings and social isolation.  Others do not understand that we literally cannot see those signals.  We need to keep our brains at the right internal operating temperature. So, we really appreciate advance info on environment and social scenarios.  And we appreciate a quiet space to let our brain cool down again. And we appreciate clear, straightforward language, so we do not visualise the wrong thing or misinterpret things.  A good autism-friendly environment helps.  So does good understanding of our communication differences.  And our passionate interests in subjects and specialist collections of info, data or things. Those solve these difficulties without the need for 'cure'.  Easy, cheap, simple.

That's autism.  That is what is in the diagnostic list, summarised.  Nothing else.

If you put anyone, autistic or not, into overwhelming, baffling, sensory-painful, lonely situations often enough... they will start to have anxiety or depression.  If you add in direct bullying, ostracism and abusive 'therapies' designed to prevent us from looking autistic, then those mental health situations get worse and worse.  Those are co-occurring mental health situations caused by society's refusal to assist us, or by therapists telling us or showing us that autism is shameful...or by predators targeting us.  Those are not autism itself. 

Now, the difficulty is that some children (whether autistic or not) will also have other co-occurring things. 

A small number will have a low IQ that means they can really struggle with learning vital things.  The low IQ isn't autism.

A small number will have speech and language difficulties that mean they may take years to talk.  The speech and language difficulty isn't autism.  See the DSM V diagnostic manual.  Speech & language difficulties are a separate thing.

A small number will have epilepsy that involves major and life-threatening seizures.   Those seizures are not autism.

A small number will have an angry and confrontational personality.  That isn't autism.  30% of autistic people experience brain events that can look like a tantrum, but there are distinct differences.  Those autistic 'meltdowns' are not trying to get attention or control deliberately, and they do not stop when the child is given something.  They are more like an internal epileptic event, causing wild behaviour and sometimes random swearing for an hour or two.  The child is then exhausted and disorientated afterwards.  Not a tantrum.  70% of us do not have those meltdowns at all, it appears. 

A small number will have a child who cannot manage toileting for many years, or at all.   That isn't part of an autism diagnosis either. 

Parents will arrive with a child with a low IQ, no speech, toileting difficulties, life-threatening epileptic incidents, perhaps an angry personality, and say, "I want this autism cured". 

It's not autism that needs the cure, there.  None of those things are caused by autism

Certainly there's a lot that needs to happen to support that child, and their family.  Definitely.  Curing autism won't solve any of that though, because all that stuff would still be there. 

If we are to have a sensible, respectful discussion with the two million autistic people in the UK, we need to know what it is.  And what it is not.

We need to know that most autistic people do not wish for a cure for their autism.  Some do. That's a personal choice I respect, though I suspect it comes from a place of loneliness and pain caused by society. 

I'd quite like society to be cured of what it does to autistic people.

So, when you meet an autistic person, please try to avoid immediately directing us to your  mental health team.  It's not the best possible way to start a relationship.  We are a mostly lovely, honourable group of people who have immense integrity and so much to bring to your life. 

Photo credit Gian Paulo Chiesi