You don't have to understand the world. You just have to find your own way around in it. - Albert Einstein

Monday, 2 April 2018

in which our Heroine discovers she has Autism Spectrum Disorder, and it really explains a lot

Today is World Autism Awareness Day. Many people in the autistic community would prefer it be known as Autism Acceptance Day, or even Autism Appreciation Day. For me, the acceptance and the appreciation flowed very easily, once I had the awareness I had been missing most of my life.

Ten years ago, I had no idea that I was autistic. I didn't see myself as being anything like the image I had of what an autistic person is like, which was probably, as for many people of my generation, associated with Dustin Hoffman's Rain Man.

Looking back, the first clue could have been reading The Curious Incident of the Dog in the Night-time by Mark Haddon. Did you ever have the feeling that there was something about you that was so very different to everyone else you knew, that you felt you were completely alone in this experience? And then one day, did you happen to discover, through chance or as a result of your own investigations, that there was someone else out there who felt the same? Do you remember how utterly miraculous that feeling was? That's what I had reading that book. I was in floods of tears half the time I was reading it. I had to stop and calm myself down enough to turn the page. The main character, Christopher, was the one, the only one that I had ever known of, who really knew how I felt. But at the time, I thought that all the sensory processing issues I had so much trouble with were due to my temporal lobe epilepsy. It seems to me they must be related, there is such an overlap in the experiences. And there is, indeed, a high incidence of epilepsy in autistic people. We don't know what the connection is, but there obviously is one. It still didn't occur to me that I was autistic myself.

Then another fictional character came into my life - Sheldon Cooper on The Big Bang Theory.

I started watching Big Bang when it first started screening here in Australia, and I loved it. It's bloody hilarious, and right up my alley with all the science references. But a strange thing started to happen as I got to know the characters better. Sheldon frequently comes out with statements that seem absolutely, outrageously wrong to everyone else, and he just can't understand what their problem is. And the audience laughs, because it's funny. But over time I came to realise that most of these crazy things he said were actually how I really, secretly thought about things myself. Only I had never, ever told anyone I really felt this way. I hardly even admitted it to myself. Once he was right in front of me on my TV screen, I could see it so clearly. Secretly, I actually am Sheldon. I've spent my whole life not letting anyone know that I am actually Sheldon, because one difference between he and I is that I know how completely socially unacceptable it is to behave and talk to people like that. And I've done a damn good job of it. I almost fooled myself. I really might still have no idea if Sheldon hadn't come into my life.

It's never openly stated that Sheldon is autistic, and the show's producers insist they did not intend to create an autistic character. I can accept and respect their explanation - they just invented a character, and when he developed, it turned out that he was autistic. But it seems to be to quite obvious to the vast majority of Big Bang viewers that of the range of 'issues' in Sheldon's life, Autism Spectrum Disorder is certainly a significant one.

At this point, rather than just continuing to debate my relationships with fictional characters, I began some proper academic research into ASD. The more I read, the more the light bulbs went off, and the more my difficult experiences made sense. I took those online tests you can find, and they told me that I'm probably autistic. After four years of reading and research, and of regular light bulb moments along the way, I was pretty certain that I must be on the spectrum. In 2013, reading Aspergirls by Rudy Simone was the clincher. My mum found a copy of this book and read it too, and she said, quote, "If that's not you, I'm a monkey's uncle."

The crucial piece of information was learning that ASD tends to present differently in girls than in boys. Girls are often good at a particular neurological mechanism called 'mirroring' which allows you to mask your autistic traits and behave more like a neurotypical person.

It was amazingly easy for me to get a diagnosis at this point, which was incredibly fortunate, because it seems that most people have to go though some kind of hell to get a formal diagnosis.  I told the psychologist I was seeing for counselling about all this, and it just happened that they had a specialist in ASD working at their clinic, and I was able to get an appointment with her. She said, oh yes, definitely, and that I was probably completely mentally exhausted from all the effort of masking my autism my entire life. I couldn't agree more.

When I got home I was so thrilled and excited, my goddessdaughter said to me, "I don't understand. Why is it good that you're autistic?" And I explained that it's the fact that I got a diagnosis that was so good, and making me so happy. Now, it's so much easier to explain to people and help them understand what is going on for me.

When I tell people who know me, especially those who have known me for a long time, they are surprised. The reasons they give for thinking that I "can't be autistic!" are my high level of emotional literacy and good social skills. They are usually under the same assumptions of stereotype that I was before I started seriously researching the condition.

Five years on, and I am completely comfortable in my identity as an autistic person. I don't have any value judgement around autistic identity - it's not worse, or better, than neurotypicality, it's just part of the natural diversity within humanity. It has helped me in so many ways to understand myself, and to identify ways to negotiate life a bit more smoothly. I wonder, I do, how life might have been different if awareness had been better while I was growing up, and I had been identified as autistic at a younger age. But then again, there's no point going down the rabbit hole of might-have-beens. I am thankful for the level of awareness in society now. When I don't get a joke (which is really very often - my main difficulties in social communication are semantic-pragmatic issues), instead of just giving a blank, quizzical stare, I can say, "Sorry, I have Asperger's, and I don't get jokes." Now this is wildly oversimplifying the truth of the situation, but it's wonderful how well people cope when I make this statement. They understand! Miracle of miracles! They drop the joke and just move directly on the next bit required by the social interaction we are sharing. There's no awkwardness, no sense of being judged at all. It is such a huge relief to have this one recurrent problem in my life solved just by making this brief statement. Anxiety levels plummet.

Sheldon has come a long way in his character development during these years, too. I am always so thankful that he came into my life. I couldn't imagine how different everything would be if he hadn't. He's like a real person to me, because his influence and effect on my life has been very, deeply real.

1 comment:

  1. Great post! I remember my a-ha moment too. I was in a seminar with Dr. Tony Attwood and he was talking about how autism present in females, and as he described the life of a female with autism, I realized that was my life he was talking about! Even though my son had been diagnosed several years earlier, I didn't make the connection to myself until that event. I agree too that it was such a relief (and a privilege, I realize) to get a formal diagnosis the following year.

    Happy Awareness/Acceptance/Appreciation Day!

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