It's autism acceptance week.
Again.
And I'm still here, wishing that autism truly was accepted.
I’m seeing workplaces trying, really trying to push autism acceptance week, bringing out the banners, shouting about accepting autism.
Doing what they think people want to see them doing.
Then those making the noises go home and dust their hands of it, done for another year.
And… nothing changes.
I’m still seeing constant battles where my three children are concerned, and hearing of the difficulties that other parents still face.
You see, in our household, chaotic as it may be with a teenage autistic boy, and his two pre-teen autistic brothers, we function perfectly well, thank you and we wouldn’t change our beautiful boys for the world.
It's other people who make life hard for us.
And I say us, rather than them ( as in our boys), because, as a family, we aim to make their lives as problem free as possible.
You see, our boys go through all manner of appointments; there are the therapies (occupational therapy, physiotherapy, SALT) the consultant appointments, the orthotics appointments, specialist dentist, specialist optician. Then there are the educational barriers, which create numerous hurdles on a daily basis; the LEA, EHCP, school battles, be it a mainstream school or specialist provision.
And they get through it.
As a parent of a child with autism, you must become thick skinned.
You will attract stares and disapproving looks because your child is ‘misbehaving’ in their eyes.
We’ve had someone tie one of our boys shoe laces, but very loosely. He couldn’t stand the feel of the loose boots, but couldn’t explain the problem, so he took them off. He got told off.
We’ve had a teacher put another of our boys special boots in a cupboard on PE day, and left them there for two months until they were found.
We’ve had someone tell one of our boys off for talking in a baby-like manner. It's how he speaks when he’s trying to be brave and speak up about something important to him.
When out and about, as parents, we bite the bullet and take it as it comes.
I could write about every struggle, every sensitivity, every issue we have encountered in our near sixteen years of living with autism, it would be a hefty novel… but each and every issue is caused by someone or something else.
The world is not inclusive yet, it is slowly improving, but there is a hell of a way to go yet.
So, each year, for autism awareness/acceptance (delete as appropriate) week, I say the following:
Everybody I speak to tells me they are aware of autism.
Everyone I speak to tells me they accept autism.
Only those living with it truly understand autism.
#theshippeycampaign
