Sunday 29 July 2018

What do I mean by "We're OK being Autistic" ? #TakeTheMaskOff

A sign showing the words Autism Acceptance

I'm OK being autistic.

Just saying that is controversial.  There are all sorts of responses, when autistic people say that.  For example, "What about people who are really suffering?  Are you some kind of autism supremacist who doesn't care about Real Autistic People who are Really Suffering?"

So, it's important to explain what I mean when I say, "I'm OK being autistic".

For a start, I'm autistic.  Readers of this blog (and my continued thanks to the 40,000+ of you) will know that I was not able to use spoken words to communicate, for years.  That I would rock and flap, lining things up, practising the same thing over...and over...and over...and over.   That I couldn't build friendships.  That being under fluorescent lighting even as a child had me running at top speed from it, blinded, crashing into people and things.  That trying to access a simple event like a dance class or a school play or party would leave me shaking with fear and hiding under whatever I could hide under, to escape from the sensory hell.  And I have an autistic son.  And partner.  And friends.  And other family.  And colleagues.

I'm autistic now. Always will be. But thanks to a lifetime of being told that I must disguise the pain, at all costs, I learned to mask.  To put on a false front, be the person that others wanted me to be.  Smile when in pain.  Be really nice when in pain and remember every one of my manners, even if non-autistic people can get away with being angry or snappy sometimes.  We're not allowed that.  Cope when in pain.  Not Be Me.  Never, ever be me.  Never.  If I was the real me, I would experience hatred from others, more isolation, more loneliness, more condemnation, more false accusation (because of ignorance of autistic culture and communication).  All whilst trying to work and care for family members.

And, do you know what happened?  It broke me.  It took a lot to 'put myself back together again', and now I work differently.  Because no-one ever, ever wants to experience being pressured until they collapse from it.

I look around at my fantastic autistic family, friends, colleagues.   The ones who have done the best masking, the best disguising?  Broken.  Or sitting amongst a trail of debris from broken relationships, broken job situations, broken health.  I look at the research showing the suicide rates, the average age of death (54).  Not from some genetic malfunction.  From relentless pressure, relentless humiliation and pain.  Anyone would die early from that.  We need less focus on pleasing shareholders with news about 'genetic cures', and more listening to autistic people.  Sorry, people hoping to make a huge profit out of drugging us or manipulating our autistic genetics.  What about giving us adapted lighting instead, or jobs based on experience not interview?  No money in that for you?  That's a shame, isn't it.

We need more realising that actually we don't need to be in that level of pain.  

How much of that pain and exhaustion is because society makes life hell? I know that many of my most 'routine-based' difficulties stopped when I realised I was in sensory pain.  I had no idea that I was in pain all the time, because it was 'all the time' I thought it was normal.  I just thought everyone was encountering the world like me, and I was just getting exhausted and stressed and panicked for no reason.  Once I adapted my life more, much of that pain stopped.  Much of the resulting stress stopped.  One example, yes - but a useful one.

There is a myth that if we disguise being autistic, it'll all go away. The future will be lovely.  All will be well.  A myth that autism was some sort of behavioural choice by us to annoy people around us, so if we stop the behaviour, we've 'cured' the autism, we've given autistic people their lives back.  Rhubarb, to use an apt word.

It's a myth.  There is no perfect future from having to pretend we're not ourselves.  Only the extra hell of having to mask each day.  


I'm OK being autistic.

I'm OK with you being autistic.

And, like so many other people, I campaign for a world where autistic people are not expected to be in pain all the time. 

Where we can acknowledge and accept that we process things differently, and build a world together where everyone benefits.  

Where buildings are better for everyone (and also helps autistic people).  Where shopping is better for everyone (and also helps autistic people). 

Where schools are no longer an endurance course of pain and fear (which will help everyone, and especially us).  

Where transport is accessible. (And hurrah that in the UK, autistic people learned today that we'll be able to apply for disability parking badges.  I was one of the people who campaigned for that too, so that e.g. families struggling with an autistic child, in traffic, can park closer to places and have less risk of death or injury).

I campaign with others for a world where families are properly supported, where accommodation is given to people which doesn't cause sensory hell.   Where people are enabled to work, enabled to access healthcare and education, enabled to access and contribute to the whole of society, faith, culture and learning.  

We have so much to offer.

So, lovely readers, that's the sort of things I mean, when I say, "I'm OK being autistic".

And, if you are serious about making a difference to the lives of autistic people, you'll want that for us too.

Look for the hashtag #TakeTheMaskOff on Twitter for more information.  Find out more from as many #ActuallyAutistic people as you can.  All sorts of us.  Whether using spoken language or not.

Thank you for reading.