Making the transition from living my old life to working out how to live my new one comes with many challenges and decisions. The most obvious (and most exciting) part of this transition is discovering my autistic identity and finding out exactly how autism affects me. I’m investigating what I can do to minimise the social exhaustion, compensate for sensory processing issues, and finally be as true to my real self as possible – maybe I’ll even manage to build a better life than before and there will be new hitherto unimagined opportunities in my future.
However, I am also mourning a loss. I mentioned earlier that the high-powered high-achieving me pretty much disappeared after the 2001 breakdown/burnout and certainly, following that time of my life, I was never quite the same again. I didn’t know then that that would always be the case, and that I was never going to be able to pull off the high-powered act for any length of time ever again. For years I hoped that I would eventually, if I worked hard enough, get back to a reasonably good life, to high achievement, to full-time work, and that I’d “get better” and become the person I’d always been expected to be.
Even after the bipolar diagnosis in my 30s, I figured that better medication would eventually be developed, maybe a sort of “super-quetiapine-without-side-effects” drug, and that the difficulties I had would be controllable medically, and if that wasn’t the case then I was learning other really good ways of dealing with life – I became proficient in the use of CBT and mindfulness techniques, and I had mood diaries and strategies in place to spot early symptoms of mania or depression and deal with them before they became disabling.
But then the autism hypothesis was formed. And as it became obvious that I was, indeed, autistic, and I started to learn about autism, I was hit with the big big realisations:
This. Is. Permanent.
I am never going to get better.
Now, a few months on from those two phrases first entering my head, and having spent some time lurking quietly in online autism communities, I’m starting to view them in a slightly different way – obviously I am always going to be autistic and I always was autistic, and the notion of “getting better” is in many ways inappropriate, but at the time the realisations hit, it felt, in some ways, like my life was over. I was broken. I was born broken. I always was broken. Everything I had ever tried to be was a sham, an illusion. I was always working for something I had no hope of achieving. This was the end of any hope of ever living a normal life.
That felt pretty big.
Because of the sort of person I am, I was simultaneously excited about the new knowledge, the new life, the new start, but also devastated to realise that I would never be the person I’d always believed I was. That high-achieving high-powered woman was a fake, an act.
I suddenly had no idea who I actually was.
And, even several months later, I still don’t really know who I am. It’s going to take a while to work it out, and to identify the autistic me who has been hiding behind a mask all these years. Which bits are real? Which bits are acting? Where do they overlap?
And in many ways, I am deeply deeply sad. Because I liked that capable person. I liked the strong woman, the confident woman who could walk into a room and hold her own in a variety of social circumstances. I liked the graduate student who had the top degree in her year and was going to be the world Mendelssohn expert. I liked the schoolteacher who could control 90 kids by simply raising her hand. I liked the way that the parents of the kids in the wind band came up to her at the end of the school concert and said that she was a superb conductor. I liked the efficient personal assistant who walked confidently around the office and had the answers to people’s questions and helped the other staff. I even liked the cleaning lady who could make a whole house sparkle with five hours solid work. She was cool. She was confident. People liked her, admired her, told her how fabulous she was, gave her jobs. She was a valuable asset to society, with lots to contribute.
But that woman never lasted long. She was brilliant, but only for short periods of time. She learnt how to succeed at job interviews, but she couldn’t keep the jobs. Behind the scenes she went home from the conferences and the concerts and the lessons and the meetings and the dinners and drank herself into oblivion. She cried in the bath every morning for half an hour before going to work. She had breakdown after breakdown and took pills to try to feel better. She wanted to be dead. And she was constantly exhausted, constantly anxious, constantly ill at ease, ready to snap at any moment.
I mourn that strong woman though. She had become weaker and weaker over the years, and now she is gone completely and will never return. She gradually morphed into a person who spent more and more time off sick, more and more time watching daytime TV and scrolling incessantly up and down a Facebook feed. The energy to maintain that woman eventually ran out, and no matter how hard I tried to keep her alive, it eventually became obvious that she was gone.
And I have now discovered why she took so much energy to construct and to maintain. She was part of a mask, an act. Whenever I left the house I was, effectively, on stage, acting a part. I was, I believe, quite good at it, but the price was great. The work that went on behind the scenes to give such a performance and to create such a production was huge.
And the energy eventually ran out.
So, farewell strong woman. I did my best for you. I poured energy into you because I was always told that you were the person I was – people were fooled, as I was at first, into believing that exam results translated into life skills that I never really possessed. But it turned out that you were a facade, and behind that facade there was somebody else, a different sort of person. A person who always needed to take more care of themself and to lead a gentler life.
I’m still trying to work out exactly who that person is, and what they need, and what their place in the world might be.