The ‘life-altering’ diagnosis

The blurb on the back of ‘Outside Looking In’ says “What if you were given a life-altering diagnosis at 57? One that meant you aren’t who you thought you were? But one that explained everything?” This blog explains that.
Every autistic person shares the same fundamental differences as every other autistic person. And every autistic person is uniquely different to every other autistic person. This may even apply to how they think about autism, and especially how they think about their own autism.
I had passed for normal for 57 years before I was diagnosed, and at that time I was really very ill. My mental health had deteriorated to the point when I couldn’t hide from myself any more and I asked for help – though I didn’t know that’s what I was doing at the time. I’d lost my job – three in quick order, in fact. I was failing – don’t tell me I wasn’t, for that was my reality then – as a mother, a wife, a worker, a daughter, a sister, a friend (what friend? I didn’t have any friends), good grief – even as a housewife!
And so I got my diagnosis (though that’s another story in itself, nothing straightforward about that little episode) and was told I had autism spectrum disorder. I was disordered.
And that felt absolutely right. I was so grateful I practically fell in love with my consultant, a wonderful woman who worked so hard for the autism community she ended up on long-term sick leave, overwhelmed by the ever-increasing demand for assessments and support.
The relief when she said, about five minutes into our first meeting: “You’re definitely one of us” was tremendous. I broke down in tears. At last, everything fit. This was the domino knocked over that set off a huge and beautiful train of falling dominoes to reveal a perfect pattern, a lovely picture that made sense. Of course I was autistic. That explained everything.
But right alongside the relief I hated the diagnosis. Me? Disordered? Disabled? No way. I was normal. I had had a successful professional career, won awards, got a degree from Oxford, had a steadfast husband and two beautiful children, went out for dinner, took walking holidays in the Lakes and north Wales, swam, read (a lot) – how could I, someone like me, be disabled?
And it took two years before I could use that word about myself. I remember the day in the sunshine in the garden, sitting in deckchairs reading the Sunday papers, when the thought drifted unbidden into my mind, and I turned to my husband and asked: “Do you think I’m disabled?” And to my horror and relief he paused and then quietly said: “Yes”. So – since I trusted his judgement, I tried it out on myself. And gradually, it began to be okay to say that. But it’s taken a lot of mental work to really accept it.
And one of the things that made it so difficult to really accept was the mental image I had of my autism. I’d read up a fair bit about ASD since my diagnosis, and learnt a bit and thought long and hard about it. And I’d come to understand that autism affects every part of a person – how we think, how we feel, how we experience the world, which is pretty much everything there is. But I didn’t see it as that neutral ’affect’, I saw it as this: autism infects every single part of you. I felt infected, and I imagined my autism like this.
You know those metal grabbers in seaside amusement arcades which you can lower into a tub of teddies and try to grab one? I imagined a sci-fi version of that clamped on my head, like a sort of neural lace, its tendrils drilling down into every cell of my brain, doing more than merely controlling me, more than merely distorting me, but in some absolute sense, defining me utterly. I was nothing except autism.
Yes. A pretty damning description of autism. True in one awful way, but totally not accurate.
In 2013, when I was diagnosed, I revisited my past life, all my memories, and I could see that everything I thought was unique about me was, in fact, down to autism. My lack of friends as a child? Autism. My following the rules? Autism. My not being able to stomach peaches and trifle and raisins in sponge because of how they felt, that awful mix of solid and liquid, smooth and fuzzy? Autism. My being an excellent investigative journalist? Autism. My tenacity, my perfectionism, my physical clumsiness, my black-and-white thinking – everything was autism. I came to see my entire life through the lens of autism. And who’s to say that’s wrong? Because all those, and more, are autistic traits. All those elements are part of my autism.
And all those differences – my rigid yes/no way of thinking, my need for routine and structure, my social clumsiness – all those are core autistic elements, differences we share that set us apart from the rest of humanity.
So what was I left with? Well, for many years it was an unhappy version of myself. I ranted and railed against it. I used it as a shield to clobber others with, I was angry with them for their ignorance, for their prejudice, for their rejection. But who wouldn’t reject someone like me?
It was only late in 2021 that a new thought came to me, courtesy of an article in a Sunday newspaper magazine. Certainly if you took autism out of the picture, out of my picture, I’d not exist – without autism the ‘Clare’ I am wouldn’t have ever existed. But I could turn the sentence around and say instead that autism is integral to who I am. Yes. But not that I am nothing but autism.
Autism is integral to who I am, but I am unique, just like every other person. And look, I can even make a joke, and everyone knows autistic people don’t get humour.
So all those autistic traits – my tenacity and forensic detail and friendlessness and honesty – all of them are autistic, but they way they mix up in me, just this much tenacity, that much honesty, that is original and unique.
So there’s a Clare who’s autistic and that same Clare is actually also a person, a fully paid up member of the human species. I hope I can hang on to this understanding. It took a long time to get here, but it’s worth it.

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