I didn’t fulfil my intention to post regularly throughout July. It was one of the busiest and most emotional months I have encountered for quite some time: Son entered the final month of primary school and the month ran away with us: there were day trips and a two-week transition spell in his secondary school, which involved me gathering together hitherto unfamiliar equipment such as a scientific calculator, a protractor, a compass, a set number of pens and pencils and some trainers for PE; there was his ELEVENTH BIRTHDAY (how did my child become so grown up?) and the rush to buy and wrap presents and purchase a cake that was apparently a disappointment because it only had his favourite TV character on it but wasn’t chocolate (oh the humanity!); the Leavers’ Disco and then the last three days back at primary school to finish off the year (with me emotionally presenting thank-you cards and presents to the teachers and teaching assistants and promising to stay in touch), then the Leavers’ Assembly (a tissue-fest of sobbing by parents, staff and pupils alike) and then …….. it was all over. The crazy whirlwind subsided and left me wondering where the heck July had gone.
Three concentrated weeks of hamster-like scrabbling to have everything ready at the right time, bolstering Son’s nerves and dealing with the big jump to life in High School, fortifying myself against the inevitable sadness and strange disconnection of leaving primary school, and going to bed mentally running through checklists for the day ahead. I was shattered by the end, mentally and emotionally spent. The last week of July was a welcome return to a sense of equilibrium.
Throughout the month, not only was I dealing with those time pressures and emotional stresses but all the while in the background I was processing the discovery that I am not autistic. As you may know from previous posts, I have been wondering for a while if I might be autistic as I share some of my son’s sensory sensitivities, emotional responses, fears and frustrations. In April, when I began following some blogs written by autistic people, I found that the experiences they were relating were similar to mine and then I discovered that autism in women presents differently to autism in men and I started to seriously question whether I might be autistic. I took some online tests and the results indicated it was worth looking into as I scored highly in general and very highly for a woman. I also scored very low on empathy, another potential indicator. Of course I knew that no online test alone can be trusted as a basis for diagnosis and many other factors may cause similar results, and as a friend once told me “not all behaviour is a personality disorder” (not that autism is a personality disorder but you get where he’s coming from), so I consulted my doctor and asked for an evaluation. I began the diagnosis process and on 7th July I had my final evaluation, at which point I was told that I do not fit the criteria for diagnosis as autistic.
I had prepared myself for both possibilities – that I was autistic and that I wasn’t. What I really wanted was to understand myself better, to understand why I am so damn sensitive to negativity and hurtful behaviour or comments, why I feel so deeply and don’t recover or seem able to move on as quickly as I’d like, why I can’t focus and become distracted, why I’m so clumsy, why I have such highs and lows, why I found socialising so painful, and why…. so many other things that autism seemed to explain.
If it wasn’t autism then I hoped that they could point me in the direction of what it was. ADHD, bi-polar personality disorder, narcissism? Self-obsession, emotional weakness, bored housewife syndrome? Why after CBT and counselling and books upon books do I keep running into the same circumstances, keep reacting before I can control myself and spend my life regretting and apologising? Why does my brain keep me up at night with songs and conversations, why does my body refuse to relax? Why doesn’t meditation help? Why can’t I keep still, why on some days do my thoughts stream through my head at high speed, so much so that I can’t keep up, yet on others I crawl through the day, barely able to form words? Why am I so sensitive to sound and light and smells and texture? So many questions.
They couldn’t say. They couldn’t point me to anything. All they could say was I wasn’t autistic and I didn’t appear to have ADHD. If I wanted to know the Why and the What exactly, I’d have to start all over again with another process with another medical department. And so at that point I gave up because I realised that either I was going to drive myself crazy chasing a diagnosis or I was going to have to face the fact that I am the way I am and it has no name and that’s all there is to it. I have to live with it and do the best with what I’ve got and stop being angry with myself for not meeting my own expectations and stop feeling inadequate for believing that I don’t meet other people’s expectations.
In some ways it was a turning point. It was freeing and also the moment when I finally had to take responsibility for myself. I am what I am and what I am is me. I have no label with which to identify, no community, no advocates. Adrift in a sea of normalcy, yet feeling anything but normal, all I have is myself. I have to have my own back, I have to be my own advocate. I have to trust myself and accept myself and feel what I feel and deal with it. In other words, I am just like everyone else in Neurotypical Land. Maybe I have unrealistic expectations. Maybe I’ve been fighting myself quite unnecessarily for all these years because I don’t meet criteria that only I set and so long ago I can’t even remember why. It doesn’t matter any more. What matters now is what I do about it.
I have a new outlook on life. I’m going to be my own advocate, I’m going to create my own community, I’m going to create my own program for happiness and self-acceptance and I’m going to have fun doing it. I have decided to remove my references on this blog to being self-diagnosed as autistic, as it appears I am not and who am I to argue with the medical profession?
I’ll still be blogging here, I’ll still be advocating on my son’s behalf, I’ll still be raising awareness of life with autism and documenting my adventures with my son because every day brings some new joy, laughter, challenge and discovery, but I’ll also be on an adventure of my own. I’ll keep you updated very soon. Watch this space!