Sunday, 6 December 2015

"But you are nothing like Child X - You don't have Real Autism"

Any autistic adult gets this a lot.
The narrative, summarised, is this:
"It's all very well Ann talking about all the strengths of autism, but that is because she is Nothing Like My Child/Nephew/Pupil.  My child is Properly Autistic.  Angry, aggressive, obsessed. We haven't slept in years.  We are trapped in our home.  I fear for the future".

And, at that point, others in the room nod, because someone who has a child must of course know far far more than the hundreds of thousands of autistic adults.  Or do they?

You see, I have an autistic son.  I'm autistic.  My husband is autistic.  My work colleagues in various places are autistic.  My fellow trainers are autistic.  Many of my best friends are autistic, and have autistic children also.  I've worked in autism for more than 20 years. I couldn't use speech for communication until I was past the age of 10.  I couldn't understand what people were until I was 10.  Our lovely son was very lively indeed.  An escaper of epic proportions who was very physical and whose strength defied belief.  I was the parent racing after him to stop him launching himself in front of passing lorries, and apologising to other parents, and wondering if I was going to get any sleep.

You know what?  If I had stopped at that point - and said, "Gosh, autism is terrible - this is a disaster", I'd have been totally wrong.

We grow up, you see. 
He's now a skilled respite care worker and trainer on autism, having done almost two years in a specialist autism school after gaining a degree in psychology & counselling.   He is gentle, considerate and caring.  We are immensely proud of him.

I learned to talk and communicate, and went on to run a national company.  I can't live entirely independently, but I work in collaboration with others and have a lovely life.  Independence wasn't the end goal, and I didn't want it to be.

And so it is with nearly all the others.  Autistic friends who are wonderful clergy team members, pastoral care workers, engineers, scientists, teachers, nurses...nothing is any more impossible than it is for other people.

Given a chance, and people who do not 'catastrophise' us, this is what happens.  Not to all, no. Some have multiple disabilities, which makes it harder.   If you have autism plus ADHD, for example, things can get much livelier.  That's the ADHD.    If you are autistic and also have a learning disability, that's double difficulty.  But that's the combination with the learning disability that is the real challenge there, arguably.  

What happens is that either a good few people misunderstand autism - and spend their lives making our lives worse (with terrible results for the whole family).  Or they mistake autism for something else, like ADHD or learning disability or 'oppositional defiant' type conditions.  None of which are autism.  But autism gets the blame for it, because it's always OK to blame autism.

Is it?
It's not OK to blame autism, at all.

Please learn what you're doing wrong, and stop doing it wrong.  That's sobering advice, I know.  But it's true.  I had to do that.  You have to do that too.  Putting us in painful sensory/social situations which we simply cannot handle means that we will indeed have problems.   Think laterally about each situation and learn not to put us in pain. 

Then you won't have a 'problem' child on your hands, and you won't have to 'demonise' or discount the rest of us.

The next time you catch yourself saying, "Oh, that Ann, she doesn't really understand Real Autism", just stop.  Because I do.  That's why I am a professional in this field, working with just under 100 organisations.

Instead of discounting what people like me say, start listening.  Starting learning.  Start getting to know us.  Because we are the future of your child, and you want to know how to get your child from here.  You do, don't you?