Thursday, 12 May 2016

Autism: How not to cause a lifetime of anxiety and shame for your child

For half an hour, yesterday, I listened to a mother, talking about her child., online
He 'has autism', she explained.  It is something separate from him, she said.  This isn't the real him, she said. 

"He's hidden behind autism.  I could tell you about life with my son, she continued, or I could tell you about my life with autism."  Paraphrased.

When he was born, said the mum, for a while he was perfect.  And then, he wasn't, because he 'has autism'. Yikes!  From hero to zero, just like that.

There was more.  Half an hour more.  Relentless tragedy.  Age of child, below school age.  We learn their full name.  I was able to trace the family within a moment online.  So could anyone else.

Parents, please stop doing this. 

I am an 'autism parent'.  And I'm autistic.  I started off non-verbal. Sometimes, I still am non-verbal.  Autism isn't something hiding who I am. 

Nor is there a 'real Ann' hiding behind my gender. 
Nor is there a real Ann hiding being my colour.  
Or my sexuality.

All four things are me. 

It hurts deeply to be told that we need to be someone else, something else,  in order to be loveable, accepted, respected.  You are loveable as you are.  So am I.  Once we learn to honour one another's differences, that becomes so clear.

Your child can understand what you are saying/writing.  Or, they soon will.

Just because they appear not to be communicating?  Well, believe me, they know.

Your child will one day be able to find that stuff, online.  It never goes.  It never disappears, that online recording.  It'll be there, in some form, forever. With their name on it. With you, their parent, explaining how you thought you had a perfect child, but have had to put up with second best. This allegedly faulty child that you didn't want.  Oh my. 

Is it any wonder so many of us commit suicide, or live with anxiety, depression and low self-esteem?  The life quality for autism is terrible, and no, it's usually not the autism doing it.  It's attitudes.  The attitude that we are broken and need fixing. The attitude that we are the child people didn't want.   

We learn differently, we become skilled at things at different rates to you.  Without the right support, it can certainly be exhausting in the early stages, yes.  Only 1.6% of autistic people live in care homes.  Only a few % never learn to speak.  In fact, not speaking isn't even part of autism diagnosis any more.  That's a separate condition. It can occur alongside autism.  It did with me.

Looking at a child, and thinking, "Oh it will always be like this", well, no, it won't.

Your child will grow up to be different and wonderful.  Always.  One cannot cure femaleness, or whiteness, or gayness, or autism.  It is a design of person.  It normally has benefits, if only people will look for them.   Two million autistic people in the UK on one estimate.  Every one of us someone with something to offer the world.

Most are honest, fair, moral, passionate about social justice.  Dedicated, expert in some interest.  Quirky, humorous, a friend, a partner, a parent., a colleague, a professional.

Right now, when they are young and mostly non-verbal, that is so hard to see, isn't it.

Never ever make their future a nightmare for them to live in, and their past a nightmare of shame and 'othering' for them to remember.

Don't do that to them, please.

By all means talk about how you need better support and services.  And how difficult it is for you, and your fine young person, to cope without that adequate support level. That's fair. 

 It's why I work nationally, where I can, with many fine others, to make a difference to that.  So you and your children have that better future.  It doesn't help me, or them, when life gets made worse by wading through that endless negativity every day.

Please don't turn your child into a model of deficit for the world to look at.  An exhibit to be stared at.   It hurts them.  

Learn about autism, from autistic people. Lots of us who are explaining this to you.  Not just me.  Learn about sensory differences, learn about brain overload, learn about why your fine young person responds as they do.Thank you for listening.