Thursday 21 December 2017

"I have a right to say how it feels" About disclosing, online.

Many of my autistic colleagues have spoken about how it feels to be talked about, online.  Most have reported that some parents and carers get quite angry, in response.

"I have a right to say how it feels", they say.  Perhaps in different words to that.  "I have a right to say how it feels to have an autistic child.  I have a right to say how I feel about autism.  I have a right to say how it impacts our family".


Yes, you do.

You have that right.

We also have a responsibility, which is to that young person in our lives.

I know you love your child.  I know you want the best for them.  I know that you are tired.  I know that you don't have enough services and support.  I know that you have to struggle to get good information, to get good training, to get enough money to keep things going.

I know you need to talk about it.

I am the parent of an autistic son.  In early years, I needed to talk about it.  We struggled.  There were school changes involved.  There was battling the system.  There was tiredness.  There was anxiety, as son would wrench away and run straight out in front of people, trolleys, traffic, with me racing to catch up.  So much much to talk about. I can talk about it online now in public, in ways that could identify him, as he's an adult and he's said that's OK.  He gave consent.

But...where?  Where is OK to talk about it?  And what is it OK to say?  Those are the things we're negotiating, in this conversation.

"My child will never understand what I say", say a number of parents.  Except...we do.  I was non-verbal  I knew what was being said.  Countless non-verbal autistic people online, explaining that yes, we hear.

"My child will never read", say a number of parents.  Except, so many now use technology to do just that.  Maybe not today.  Maybe next year, the year after, in five years...

Your child hears what you say.  One day, your child will read what you wrote.  The online stuff is going to be there for a long, long time.

So, what will they hear?  Especially as so many have hearing so good that they can hear from several rooms away... even if you are keeping your voice to a low level.  Will they hear you say, "I am so tired, I wish we had more support as a family so that my fantastic child is able to cope better, and I'm less stressed out."  Yes, that's true.

Or will they hear, "I hate autism.  My child has destroyed my life.  My child will never be able to talk, never be able to achieve, never get a job, never have a relationship, never have friends...".

If you were your child, which message would you like to hear about you?  What message does it tell you about your worth, to your parent?

If your child learns to read, or has technology to do so, one day, and finds what you wrote online about them, using their name and picture, what will they read?

Will they read, "Why is this system such a struggle?  How do I find the right things for our family?  Who can lead us through this and help us understand?"

Or will they read, "Why is my child such a nightmare?  What about the impact of my child on the rest of the family?  Thank goodness I'm such a superhero, because we need to be superheroes to cope with A Child Like That, don't we.  Those autistic adults are so nasty for saying we're hurting our own children for talking about them online in awful or humiliating ways, for all to see.  They haven't a clue what we parents endure."

Will they go to a school, to find that the more able readers have read all about their toileting habits, and use that information to bully them?  Will they go to start a job, in years to come, and find their employer has Googled their name and is now reading what Dad said about how this person destroyed their lives?  Yes, you can't imagine that your child will ever be in work.  People couldn't believe I was going to work, either.

Just some examples.
We know that the autistic suicide rate is huge. 
We know that so many autistic people are living with massive anxiety and depression. 
We know that on average, we die 16 years before others, because our quality of life is made so bad.

That's not 'autism'.  That's living in a world that is relentlessly hostile.

We need you to be on our side.

We need you to be there.

We need you to believe in us.

And it hurts.  It hurts so much when what we hear is, "My child has destroyed me". Or words similar.  "I hate autism", or words similar.   Autism, you see, is us.  It's who we are.  There is no 'real child' hidden behind autism.  It's us. 

Those distress behaviours are distress, not 'autism'.  Distress at real pain from the sensory environment.  Distress at real pain from social overload.  Distress at real pain from thinking we personally have caused our parents to hate us, just for being us.  That our parents think we will never achieve anything.  That all of our lives will be lonely and friendless and jobless.  After all, why would our parent lie about that?  It must be true...

A lifetime of those negative things, written for all to see....that's not good for any child.   For autistic children, it can be devastating.

Your child hears you.

Love them.  Find support quietly, safeguarding their identity from public vision until they can give you consent to release details.  It's possible to write powerfully using a pen-name, not a real name.  Listen to autistic adults, because lots of us have been the same as your child, in the past.  No, really.  Listen to lots of us, so you can get some useful things from each person.   And when you're talking anywhere near your child, put the blame where it belongs: on a system that doesn't help you as a family.    On a world that doesn't understand autism Help us change that system.  Help us work with you, so that your child succeeds.

Love them. 
Protect them from public and peer scorn and missed opportunity in later life.

For you are their anchor in this storm.

Thank you for listening.

The picture shows a young girl in a yellow dress, communicating with a peaceful dapple grey horse.   Just because it's a lovely photo.  And because a life around horses, dogs and cats taught me a lot about how to communicate, and how to begin to use language.  But that's another story...