Post Diagnosis:The Aftermath. Let’s start with some numbers, shall we? I like numbers and, contrary to popular autistic stereotypes, that is not because I enjoy or am good at maths. I just like the patterns that numbers can make. Looking back, perhaps my parents should have suspected that there was something autistic going on when, at the age of seven, I changed my name from Harriet to Harriett. Two sets of four letters, each block ended with a double letter – it just looked and felt so right.
But I digress, and here goes: it has been 50 days since I was diagnosed with Autism; seven sevens plus one. I will be thirty-seven this year. Having been diagnosed at thirty-six, I doubt that I will pass away before the age of seventy-two – hopefully not, anyway. So, I have over half my life yet to come as an autistic woman. There were lots of sevens in there – perhaps seven will turn out to be my “special autistic number”. And if such a thing didn’t exist before, well, it does now.
I think that the initial shock of associating Autism with myself came when I began to research it, rather than the actual moment of official diagnosis. I was over my surprise by the time I spoke to the psychiatrist, and just grateful that he agreed with me.
Since then, in classic autistic style, I have wanted to get to grips with this weird and wonderful thing called Autism that makes my brain behave differently to everybody else’s. I have decided that I have to know everything about it, to be involved with every aspect of it, to immerse myself in the research, the community…. in short, I have to get on top of this thing. So, I have joined the National Autism Society, ordering an autism alert card to carry around in my wallet that part of me frankly hopes I will never have to use. I have looked into local Autism charities and prepared to sign up for some volunteering when lockdown eases. I have compiled a list of reading matter and started reading it. And, of course, I have told some people.
You might think that, being a sheltered, Jewish only-girl, my first Declaration of Autism would be to my parents. Actually, the first person I told was my friend Catya. I’ve been friends with Catya ever since we danced alongside each other in our university dance company. She is interesting, intelligent, loyal and quite unbelievably tall. Growing up Asian in a small-town in Scotland, she knows what it is to be a bit different. And, most importantly, she lives in Hong Kong, so I could write my big news in an email rather than have to use the dreaded telephone or see her face to face.
One of my first thoughts after diagnosis was “my friends and family will get such a shock, poor them!” This was accompanied by a swooping feeling in my stomach which usually appears at any anticipation of other people getting emotional. But, after a bit more thought, I had another thought: that the problem may be that my friends and family would not be surprised after all. Perhaps they had suspected all along, and were too polite to say anything, I wondered, feeling a little embarrassed.
So, I sent my email off to Catya, telling her that I was now autistic and elaborating a bit about the discovery. She replied a few days later. “After your last email I promptly did the autism test and scored a whopping 12/50! It was fascinating though,” she wrote, “because going through the questions I was considering how you might answer them and thinking, “yeah I can see that”. Giving you more understanding about yourself is a good way of looking at it.”
Upon reflection, Catya did a good job, I thought. She was a little jokey about the AQ test, then serious and sensible. Next up: my parents. I waited until after my mother’s birthday in case it spoiled her day, gamely icing her cake and doling out presents. Then I told them. And my mother was not surprised. Not surprised at all. My father was, but he got over it fairly quickly. We are very alike, my father and I: I could see his brain fitting together the pieces of the puzzle just as mine had, coming to the conclusion that it couldn’t really ever have been anything but Autism.
On the surface, I seem to be doing a pretty good job, don’t I? I am being positive and proactive, taking everything in my stride. Except that things aren’t always like that. There is an undercurrent swirling around inside me that, every now and again, threatens to suck me under. It rises towards the surface when I am tired, or rundown, or things get complicated. It tells me that I can’t cope, that I don’t know what’s going on. It stops me in my tracks, to the point where I can almost feel my body shutting down. Or else it sends me to bed, to sleep, to escape. I have had several…. what? Wobbles? Shutdowns? The only light in the darkness is that when I previously burned out and had to stop, or sleep, or just be overwhelmed, this would be compounded by a feeling of guilt: I knew that most other people were resilient enough to carry on, and somehow, I wasn’t. Now I tell myself that I have Autism, it is ok, and I must do what I need to do in order to keep myself on an even keel.
The present is one thing, and the past another factor to contend with. The first book on my Autism reading list was “Odd Girl Out” by Laura James, a journalist who was diagnosed autistic in adulthood. She writes about a process post-diagnosis almost of grieving for the years she lost trying to be neurotypical, misunderstood by the people around her. I have also been afflicted by sudden outbursts of grief, thinking about times in my past that could have been so different had I just known that I was autistic. I tell myself that looking back is an exercise in futility; that I can’t change anything now. Then I think of something and I am suddenly angry – towards my mum and dad, my teachers, that health visitor who saw that I wasn’t responding to her and did nothing about it.
I took the Easter weekend off work and spent it with my parents. I read, snoozed after lunch, walked Loretta along the beach. I had decided in advance to use those four days to figure everything out. And here, after much reflection, is what I have learnt: I am in the process of re-adjusting my entire perception of myself. This will be positive, rewarding, upsetting, and difficult. And it is going to take a hell of a lot longer than four days. All I can do is tell myself that I am autistic, that I know that now, and that it is going to be alright.
