Thursday, 9 April 2015

I Am Autistic: My Path From Long Denial of Autism To Acceptance, part one

There. I've said it. I am autistic.

My previous blog post covered all that, a public statement, a very real coming out about my autistic brain. If you haven't read it and wish to, the link is under these words.  The first post provides some context to this one.

But how did I come to realise and accept this? How did my fifteen year rejection of an idea become acceptance of a truth? How did I come to be thankful for a truth that I could never properly consider before?

There were reasons why I kept steadfastly rejecting the idea, why I could not even begin to conceive that I could actually be autistic. I'd been able to joke about it – the joke came up too frequently, whenever I was over-literal in interpreting language, whenever I strongly exhibited any trait that would stereotypically fit an autistic pattern. But I couldn't take it seriously.

I couldn't deal with the idea until I'd dealt with gender issues and found some control, balance, happiness and hope in my life. While still indulging in self-rejection and self-hatred, while still seeing myself as a monster (or “abomination” as I thought the Bible said) I couldn't possibly have looked closely at the idea of autism.

I couldn't deal with the idea until my mother died. Unconsciously I believed in some way that I'd never hear the end of it if I took autism seriously. She would say “I told you so. Because I understand perfectly.” And she would say it too often for me to cope with. Of course, she might never have said things like that at all. But unconsciously I believed that she would and so could not face the idea.

And I couldn't deal with the idea because, in honesty, I didn't know enough about autism. Most of what I “knew” was based on stereotypes of very troubled children, very unruly or very silent or both. And I wasn't like that. I wasn't unruly as a child. I got on and did the school work without rebellion. And I wasn't more silent than others, at least not abnormally so. I didn't cope well through childhood and had lots of issues but I wasn't like that,was I? I wasn't like thosechildren in lurid TV documentaries. So I couldn't possibly be autistic could I? Asperger Syndrome was a silly idea, it just couldn't apply.

The only adult, openly autistic people I'd spent time around didn't help me either. They may not have been like those children but theytreated their autism as a guaranteed reason why they couldn't and wouldn't amount to anything in life. They said things like “My brain is deformed so there is no place for me in society, I can never be accepted.” They were without hope of a future which is a deep shame and a deeper shame when I consider just how intelligent they were and how much they had within them of wondrous quality. When the only autistic adults you know repeatedly say things like that then it's impossible to conceive that you too may be autistic, impossible to conceive that things may be just as hopeless for you.

Of course, now I firmly believe that these people were wrong. Not through their own fault but because of whatever had been told to them repeatedly as they grew up. It's so sad to know that there are people who, because of their autism, have been told that they are deformed, useless, of no value, and have come to believe it so strongly that nothing anyone else says can get through.

So for all the years of having this autism, Asperger Syndrome idea dancing in my head over and over again it was completely impossible for me to consider that it might actually be true rather than me just having a few coincidental similarities, sharing a trait or three. And I could explain those traits away. After all, as I told myself – entirely erroneously – isn't everyone somewhere on the autism spectrum? (No, most people are nowhere on the spectrum. There's my ignorance on display again.) So if I saw similarities it meant nothing. Nothing at all. Final verdict. End. Of. Story.

My perfectly held logical theories about my brain being nicely neurotypical began to fall apart only when I met other adult autistic people who didn't feel the same way as those I had met before. It was almost as if the universe knew I was ready for revelation and so began to throw autistic people at me. These were autistic people getting on with life, not letting their autism diagnosis get in the way of living. These are people with determination, people who believe in themselves and in their abilities. Yes, their autism can be challenging. Sometimes it can be very challenging indeed. But sometimes it can be helpful too. These are people who accept that their autism has helped to make them who they are and that in many ways they are better people for having autism, despite the challenges and struggles they have faced and still face in dealing with it.

These people, thrown at me by the universe, have changed my life. They didn't mean to do it but things cannot go back to how they were. I began talking with them about autism. About how it felt to be autistic – if “felt” is the right word. About their experiences. About symptoms. About expressing symptoms and about hiding those symptoms. I fully expected that taking to these people would kill the joke in my life. I'd be able to turn round and say that I was nothing like that. No, not me. I'm not like them. It's amazing just how defensive a person can be against an idea.

Things didn't work out that way. Rather, talking with these people began to confirm that the joke should be taken seriously. Very seriously indeed. I don't want to say much about the people I talked with. They should remain anonymous as I haven't got permission to write about them and reveal any specific information. So I'll say as little as possible. And the language will be gender neutral. Sorry if that language confuses anyone. They know who they are and some who are close to me know who they are and will know who I'm talking about in the next paragraph.

Very recently I've had long talks on autism with one particular friend. One of those autistic people the universe threw at me. It's a completely unexpected friendship for which I am utterly grateful in so many ways. On one day, having already spent much time talking – it was the sort of day when a drink in a café stretches to many hours – they decided to reveal their autism to me. Not that they are autistic. I knew that already. And having talked quite a bit I knew some of the theory of what that meant. But on that day they decided to BE autistic around me, to show the reality, rather than doing their best through hard effort to fit into a convenient neurotypical pattern for my sake.

So we sat in a café and my friend goes from being the person they had until that moment presented to me, drops many of the walls and ways of presentation, and appears before me as themself. Gosh, convincing a word processor that “themself” is a word is difficult. They were nervous about it but believed and hoped that I'd understand. That nervousness was normal – I won't say how they behaved in front of me (nothing immoral or outrageous or loud) but it wasn't the way most polite English people would behave in a café when with someone they don't know well.

Their belief, their hope was right. I understood. To be honest I felt very privileged to be seeing a reality that not everyone gets to see. I felt very blessed to have been trusted enough by my friend that they let me see at least some of what their inner life is like and what their manner of being can be like when not trying to fit in to what we are told is normal.

They told me they had thought I might understand. My response was that there was nothing to understand. They had acted much as I might wish to act if I didn't feel so guilty about it. It seems I find them and other autistic friends pretty easy to understand. It's everyone else I find difficult. It turns out that how they are is just the way life already is for me underneath all my own defences and attempts to fit in. I am told that this understanding of one set of people and difficulty understanding another says a lot about me.

My friend told me that they had decided that I am autistic. They weren't the first. Another friend told me they had spotted it on a first meeting. I find I trust my friends. They are intelligent. They have wisdom. And, crucially, they have personal experience.

Everything in my new friendships pointed in only one direction. Never before had it been a direction I'd been willing to look in but I like these friends. I respect and admire them for who they are, what they do and the challenges they give themselves in being the best they can be. Because of their manner of being I could accept that what was true for them – and what they recognised in me – might be truth for me after all.

I'd taken the journey from a belief in the impossibility of something to a belief in the possibility of something – and, grudgingly, the probability of something. But I had to know. I couldn't be satisfied with a “might”. I needed confirmation. Or denial – though by that time I knew that confirmation was the more likely outcome.

It was time to consider things very carefully. Very carefully indeed. To stop joking and get serious. OK. I might be autistic. I am told there is a good chance that I am. It was time to research and find out for myself.

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