Sunday, 18 March 2018
Cold snow, caught in bitter winds. Twilight, with no shelter from Spring's leaves.
A countless number whose lives are no longer...
whose graves are unmarked
whose cries for help went unheard
For those cries for help may sound like anger, like bitterness, like scorn, in a world unaccustomed to the voices of the autistic people brought to their knees in desperation.
When you respond with anger, with mockery, with a sense that this is a battle to be won, a test of your power and superiority.
For those words you speak may be the last they hear.
Echoing across the cold snow, caught in bitter winds.
In memory of all of the autistic people who have taken their own lives.
Nine times the suicide rate of non-autistic people.
If you or anyone you know is feeling like you cannot go on, please contact a service who can listen and support you. These are listed here:
https://www.nhs.uk/conditions/suicide/ in the UK
https://suicidepreventionlifeline.org/ in the USA
Saturday, 10 March 2018
Then, another speaker arrived on stage. An eminent professional. Very well connected. They gave a speech which portrayed autism and parents of autistic children in various negative ways.
There was a stunned silence from the professional audience.
One of the professionals in the audience asked for the roving microphone, and said what a lot of the others were thinking - that this was totally not OK. Their interruption received applause and cheering.
The speaker left the stage, unapplauded.
The autistic communities had quite enough of being told all sorts of nonsense about autism a long time back.
But now, a huge and growing number of the non-autistic professionals are agreeing that it's not OK. The non-autistic professionals are saying 'no' to theories that humiliate autistic people and their families. They are wanting to listen. They are wanting to learn directly from autistic people of all kinds and of all backgrounds. They are seeing us as allies, rather than zoo exhibits or examples of broken things that need fixing.
It was a pivotal moment. A moment where it became OK for such professionals to say a public, 'NO!' to their colleagues who want to speak about us and our families in ways that 'other', humiliate, blame or shame.
The conference organisers put up an apology for the person's speech. They said it did not represent their views.
Think carefully about who you invite on a stage to talk about autism. Not everyone with a list of qualification as long as your arm is a suitable person to stand up and speak.
Ask good autistic speakers, autistic professionals. Organise the events with autistic 'voices' present, with equal power to the non-autistic ones. Make sure you pay autistic people the same as you pay the non-autistic ones. Ensure that the non-autistic speakers are allies.
And rejoice with us that the audience said, "No!"
The picture shows a hand holding a white sign, with the word NO! written on it in red.
Thursday, 1 March 2018
I want to talk about something important.
We hear a lot about 'behaviour', as if what happens to us during overload is a bad attitude.
Let me talk you through a shutdown that happened to me this week.
It had been quite a few weeks for me. I'd tried a lot of new things. New venture to a different country with lovely friends. New venture to a series of lectures in a new location. Wonderful. New venture to a part of London I'd never visited before, to be a panel speaker at a conference.
News that a close friend had died.
News that an Uncle had died.
News that my partner's operation hadn't gone to plan.
And then, news that a place of faith had done something that would make it near-impossible for me to be there. A thing that meant so much to me, to give me a chance to find peace and healing.
I had reached, 'can't'. The social imponderabilities had reached such a level that I could no longer function.
The whole world starts to slow down. Become unprocessable. The picture at the top shows how it starts to look. Too bright, too loud, too dazzling, too blinding, too deafening.
I can no longer process sound and voice. The pain starts. Pain isn't quite the right word for it. I'm entering a brain event. The social centre of my brain can no longer handle the load and is now electrocuting itself. I lose the ability to work out who's who, what they want...and to make sense of any social situation during that episode. If I don't rest, the episode can go on for hours. I lose the ability to speak coherently, and if it's really bad, write coherently. I can lose the ability to move.
It is terrifying to experience, a brain electrical storm. Utterly terrifying. A literal, real brain event, not a choice.
Afterwards, exhaustion. Days to recover from a bad one.
As someone who has to keep functioning on some level as a carer and as a business owner, I do all in my power to avoid these events. Forward planning, careful rehearsal, advance information. Learning about people around me so that I can avoid social eek. Avoiding people who are shouty and nasty, or ostracising and excluding. Anything that could give that brain circuit too big an 'ask'. Avoiding sensory overload. Flickering lighting, deafening sudden noise, overwhelming chatter.
I can go for weeks without shutdown, as an adult, if allowed to.
Sometimes, I'm pushed into one.
I will do all in my power to avoid one.
It is not a question of having a 'bad attitude' to certain people and needing to forgive them.
Some people cause shutdowns, and are not safe for me to be near.
People who tell untruths about sensory and social hazards, for example.
Shutdowns are a hidden majority of autistic experience. We hear about meltdowns, where behaviour looks angry. But shutdowns -little is ever said,
We need people to know.