Sunday, 15 April 2018

“You don’t know what it is like to be an Autism Carer”

I see a lot of my autistic colleagues being told this. I have been told this, often.
It comes from a deep misunderstanding of autism.

I am a parent. I am autistic. I grew up as a young carer to a desperately ill mum, without a shred of support from Church or society. What I say next is not a plea for pity, or a bid for Sainthood. It is simply a list of facts.

It was hard work to battle the systems. Get the right medical help for mum, during times when she was a danger to herself and others around her. That wasn’t evil. It was a medical situation that she could not control.  It was harder work when autistic myself, nonverbal during times of stress and overload. I learned a lot about survival. I learned a lot about love. 

 I had to organise the funerals of my parents whilst I was in my 20s.
I wonder if you can imagine what life was like? I am not alone in this history. I have good friends who are autistic and have been carers almost all their lives,

As a parent, I had to find ways to honour each autistic member of the family. Support each one to be the best they can be. Be there through good times and bad. Find a path through schools. Cope with running a business through two recessions on top of much of this.  Cope with very tough cancer treatment in 2011-12. Put up with some business and Church people making it tougher still.

I am still here.
I am still here to consider the lack of support for me as an autistic carer, and parent. Autistic parents aren’t supposed to exist, it seems. But we do. Thousands of us, caring. 
I am still here to wake up to a bunch of people telling autistic parents like me that we don’t know what it’s like to be a carer. Many good people out there of course. But some...well, where does that myth come from?

It’s simply wrong.

We know.

And, we continue to love. Continue to hope. Continue to offer our knowledge and our advice about autism. Continue to support those around us. Continue to tell people to find and hear all sorts of autistic people. Continue to campaign for equality. For justice. For the right to do the things others can do. Continue to ask for the support that all need. 

It would be great if we got support also.

We need fewer people saying, ‘...those dreadful autistic people..’ , and more saying, ‘How can we work together to bring about a good result for us all?’

Thank you for listening.