I AM AUTISTIC
On March 26, 2021, I received a bonus birthday: my autism identity. It’s an identity I should have received five years earlier when other members of my family were diagnosed. Although I displayed very clear, significant indicators, the psychologist dismissed me because I had ‘good eye contact’. (NB: eye contact is a learned behaviour that many women, in particular, have developed enough to ‘pass’ in this neurotypical world and is not a defining marker as to whether or not you are autistic.) Three years later, a different psychologist making a home visit to support another family member mentioned that she considered me a ‘high functioning autistic’. (NB: the autistic community tends to reject the notion of ‘high’ or ‘low’ functioning for many reasons.) I spoke to another psychologist who said she wouldn’t call me autistic but would say that I had a ‘social communication disorder’. (NB: autistic women are frequently misdiagnosed with many different conditions before they are ultimately identified as what they really are—neurodivergent.)
After sitting with all these confusing messages for another two years, I decided to find clinical psychologists who are experts in identifying female autists. It was a cloud that had been hanging over my head for five years… on top of a lifetime affected by ill health, depression, anxiety, an eating disorder, suicidal ideations, risky behaviours, alcohol excess (to cope with the anxiety), insomnia, vertigo, rheumatological conditions, digestive issues, swallowing issues, post-traumatic stress, broken friendships, bullying and at least four major burnout events, one of which resulted in an official diagnosis of chronic fatigue syndrome. All of these can be co-factors of autism that SHOULD HAVE BEEN PICKED UP by healthcare professionals. They weren’t, though, because I’m female and females are repeatedly dismissed in the medical world. (It’s a thing. You can look it up.)
At 45 years of age I got my answer: I am autistic. Always was, always will be.
The diagnosis came at a time when I was in a year-long burnout and couldn’t see how I could continue writing. I was on the cusp of giving away a great, hard-won career. That diagnosis (I actually prefer to the term ‘identity’) changed my life and saved my career. Finally understanding ‘what was wrong with me’ (spoiler, there is nothing wrong with me… I am different not less… though that doesn’t diminish that living in a neurotypical world is exhausting) gave me the keys to support my struggles and capitalise on my strengths. My agent was supportive. My publisher was supportive. I found a new story I was passionate to write and I’m writing it now.
I wish I had known this so much earlier in my life. The online #actuallyautistic community is the greatest source of information. (Follow that hashtag to hear from autistic people themselves rather than neurotypical people theorising about us.) I follow many younger female autists online and they are leading the way for the rest of us though I know it is equally important for our mature voices to be in the mix as well.
This diagnosis is a good thing, an empowering thing, a revolutionary thing. You are welcome to say ‘congratulations’ and bake me a cake
An autism diagnosis is not a tragedy. A missed diagnosis might be.
I am sharing with you now because I know so many young people need to see themselves in the future and to do that they need role models, people who’ve been there before and made it to the other side. To all of you, I see you. You matter. You are needed in this world. You belong. Your brain is beautiful.Jo x
P.S. One last thing! In case you never read anything else from me again, can I please take this opportunity to dispel the dangerous myth that ‘autistic people have no empathy’? It is dead wrong. In fact, many of us (including myself) have hyper empathy, where we feel ALL the things ALL the time. This is a difficult way to live. It might mean, though, that while we’re busy feeling all the things all the time, we might take longer to give you the immediate response you may be looking for and you misinterpret us as not feeling, when really we’re feeling so much we’ve been temporarily slayed by the feelings. Please, please correct this myth wherever you can. It hurts us so much. X