Regular readers of this blog may remember that I received an informal diagnosis of autism in July 2019. Initially, I didn’t plan to seek a formal diagnosis, but then I learned about the “lost generation” of autistic people, mostly women, who were not diagnosed in childhood because the way their autism manifested didn’t fit the diagnostic criteria which had been developed from observing some autistic boys. As a lifelong feminist, I decided I needed to find out for sure so that, if I did receive a formal diagnosis, that would, if only in a very small way, help to redress that imbalance.
So I went to my GP in August 2019, armed with a copy of Camouflage: The Hidden Lives of Autistic Women, an excellent graphic novel by Sarah Bargiela and Sophie Standing. I had also taken the AQ10 test and scored 9 out of 10. My GP was kind, understanding and knowledgeable; he told me he had been through the process with other people. In September 2019 he sent me a 50-question test which I completed and sent back, though parts of it seemed rather out of date (Q: “Do you remember all the phone numbers you use?” A: “I used to but I haven’t had to dial a number in years, have you not heard of mobile phones?”)
Then I heard nothing for a year. I suspect the pandemic didn’t help. By summer 2020 I was getting antsy, and an autistic friend of mine referred me to an autistic friend of hers for advice. We chatted on WhatsApp and my adviser said she was sure I was autistic. She suggested I read two books: Divergent Mind by Jenara Nerenberg and Spectrum Women: Walking to the Beat of Autism edited by Michelle Garnett and Barb Cook, to ‘find the fruits in my personal autism fruit salad’. This is an ongoing process, but so far I have identified:
- A degree of alexithymia (impaired awareness of emotions)
- Sensory processing problems (all sorts of ‘normal’ things I can’t stand: nightclub environments, labels in my clothes, jewellery hanging off me and clanking, the sound of a tap dripping, the feeling of most synthetic fabrics – I could go on)
- Information processing problems (I have great difficulty in staying engaged with talk radio, audiobooks, podcasts etc; even if it’s something I want to listen to, I can’t concentrate and my thoughts drift off elsewhere, and I find TV boring)
- Co-ordination problems (my balance is not good and I’m very clumsy; I need to investigate the proprioceptive and vestibular senses, and interoception, to see if I can figure out why).
Also I have a couple of the auto-immune health conditions which are common in autistic people – in my case, asthma and fibromyalgia. And there’s plenty else besides: literal thinking; ability to focus intensely on a task of interest; inability to remember left and right, or which way to turn a screw to tighten or loosen it; plain speaking; strong dislike for bright lights and loud music; repetitive thoughts (they can be really annoying); silent counting (that’s very soothing); very acute sense of smell (not always a blessing); and lots more.
My adviser also suggested I join a couple of Facebook groups for autistic women. She explained that self-diagnosis is accepted in the autistic community – I later discovered this is not least because some people in some countries can’t get an actual diagnosis, e.g. because it’s not covered by health insurance (oh I do love the NHS). So I joined the groups and found them hugely helpful, though ironically I haven’t been on FB in recent months, because I can’t stand the new design, because, yes, I’m autistic!
The assessment was done by the Adult ADHD and Autism Service of my local NHS Healthcare Trust. The process began in early December with a phone appointment which, to my surprise, was a battery of personal questions. (Nobody expects the Spanish Inquisition!) Tell me about your family, your early childhood, your schooling, your friendships… The woman asking the questions was very kind, but it was, as one friend said, like therapy without any actual therapy. Then the Service emailed me a form for ‘someone close to me’ to fill in, which asked about my ability to engage socially (not bad in some circumstances), whether I take things literally (hell yeah, gets me into all sorts of trouble), my response to changes of plan (noooooo!!), and so on. The form was completed over the winter holiday and sent back at the end of December.
Then on 22nd February I had a video appointment with a mental health nurse. He told me the assessment was multi-disciplinary and that, although in this appointment I would only see him, he had consulted with his colleagues. Then he asked me another whole bunch of questions, some of which I had already been asked by the woman on the phone, and finally told me I am autistic. “There is no doubt,” he said. He also explained that they don’t give classifications, just a diagnosis, but I don’t care what kind of autistic I am, it’s enough to have a word to explain a whole lot of things I have spent my life being unable to understand.
Over the last couple of weeks I have come out in person to my family, friends, and colleagues. A few people knew I was going through the assessment; most didn’t. I know I have been extremely lucky that almost everyone reacted positively and supportively. Several friends said things like ‘I don’t know anything about autism but I know you and I love you and please tell me all about it when we speak’, which was fine by me. Many were genuinely interested, which was nice. And some colleagues floored me with the level of their support and care.
Now I am coming out in public. I am happy and proud to be autistic.
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