19 Nov

Let’s talk about…Autism

the infinity sign in rainbow coloursSo, I might have been a bit quiet this year, but I’ve had a LOT to get my head around. Back in January I started to do a course named Understanding Autism by Future Learn.  I thought that I’d do the course because some friends of my son are Autistic and I thought that if I knew more about it, than I could explain what that meant, to him.  Coincidentally, at the same time I came across some YouTube videos about autism in women.

And the penny dropped. The reason behind my crazy messed up life. The reason for my clumsiness of body and speech.  The too-many-to-mention mix ups and misunderstandings.  The way that I can write fluently yet struggle in face to face communication.  Why I can’t stand wool on my skin or scratchy labels in my clothes.  Why my parents had my hearing tested as a child because they didn’t think I could hear them.  The way I like things neat and clean, and why my ears hurt if it’s too loud.  How I can hear electricity and nobody else can.  How I literally cannot hear someone talking to me if there is more than one noise of a similar volume going on at the same time.  Why I’ve felt like I can fit in everywhere and yet nowhere at the same time.  Why I seem to experience time very differently to everyone else.  Why I’m different, “other worldly”, “too good for this world”, and even “aggressive” or “patronising” or other such hurtful descriptions for my poor overloaded little soul.

How I’ve been gaslit into thinking that none of the above mattered that my experiences were somehow all in my head and I was making them up.  How all the bad things that have happened to me are my fault, because I was a broken, a wrong, a faulty individual.  That I deserved it, brought it all on myself, that I am flawed, and nobody else is that accident prone/stupid/careless/naive/other insult.

How I’ve cried and accepted that I was just faulty, damaged, wrong, a square peg in a round hole, a black sheep, defective and somehow deficient because I am unable to cope with things that other people seem to do really easily.

But I’m not. I’m normal. A perfectly normal autistic person and there are thousands and thousands of people out there who are just like me.  It was an emotional cannonball.  From my initial joy that there are so many people out there who have had such similar experiences of life as me, the confusion and depression hit me as I looked over a whole lifetime of experiences and re-examined them under the lens of autism.  I don’t want to go into it all here but I’ve had an unusual life that has been unusually traumatic.  The victim-blaming I experienced became even more upsetting now the light of autism has been shone on those dark places.

I’d accepted over the years that I was different from everyone around me, and now I find I am not so unique after all. At first this felt like a betrayal, but is increasingly feeling like a comfort.  But the comfort of a community also brings with it the outrage and despair that people like me have been mistreated, institutionalised, misunderstood, misdiagnosed and even killed because we are different.  The marginalisation and abuse of autistic people is a heavy burden to share, and it is still very much happening today.

So just as I found I am no longer alone, at the same time, it’s now set in stone that I will never, ever be “normal”.  I’ll never be able to enjoy normal social occasions like weddings and barbecues.  I’ll always stick out like an awkward sore thumb and I’ll never just blend in and be one of the crowd.  Some things in life will just always be hard and upsetting for me and no amount of mindfulness will fix that. And I know, you should be proud to be yourself, and I know I’ve never even wanted to be a Karen but I guess part of me wanted the normal two kids, a husband and financial security. I know that I have talents and skills that your average person doesn’t.  But it’s tough.

Online, the #ActuallyAutistic community is strong, and warm, and supportive and I’ve learned so much from my fellow autistics. But then I hop back into real life and realise how little people are aware of autism in my day to day life and how nobody understands or appreciates our struggles.  And why should they?  Before January, my main image of Autism was a little non verbal white boy, rocking back and forth and maybe screaming and biting people.  That it was some kind of brain disorder and that the explanation was the “extreme male brain” theory.

I have only just begun this journey, but I’ve learned that just because we are disabled, it doesn’t mean we are incapable.  That autism isn’t a brain defect but a difference in neurological circuitry.  I’ve learned that we experience the world with less filters than the neurotypical brain, and therefore our daily experiences are significantly more vivid in many many ways, some of which can be utterly exhausting and overwhelming.  I’ve discovered that simple things like headphones can make such a big difference to how tired I get in a day, and that not stimming causes me anxiety.  I have to move, always, and this is OK.  It’s beautiful to discover things that are helping me, but I have moments of regret, knowing that every area of my past from school results to avoiding abusive situations might have had different outcomes if I had just known I was different.

It’s been a rollercoaster, a bittersweet journey and I’ve barely scratched the surface here of my autistic internal voyage so far.  It’s hard to believe that this time last year I didn’t know that I was autistic – or that the professionals that I’ve encountered over the years didn’t spot it either.  I’ve still got a way to go till I achieve Autistic Nirvana and lose my well crafted but rapidly cracking mask completely but, I’m hoping, that getting it here in black and white, will help, a little.

In the meantime, I have so many ideas for t-shirts.  Here’s what I’ve made so far: https://www.wildbunnyarts.uk/product-category/t-shirts/autistic-pride/

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