These are words I’ve been saying for the last two years, with increased certainty. And this weekend, I finally got an email that said yes, Lizzie, you are autistic. You were right.
Rarely have so few words meant so much to me – especially as I live in a world of poetry and prose. But really, reading that I fit the profile of Autistic Spectrum Disorder was a kind of relief I find hard to describe.
I’ve spent the last few days in a total high since I saw the email at 9am on Sunday morning. I feel validated, recognised, reassured that I was right about myself and not imagining things.
I mentioned in my last post how a friend of a friend seeking diagnosis and suffering from imposter syndrome had said to them that not everyone reads all the information on Autism and goes “heck that’s me. Let’s go get diagnosed.” In fact, I’ve come to realise a lot of people my age just have to settle with the “heck that’s me” because the diagnostic process is long and difficult.
I realised I was autistic in June 2015 when a friend also was diagnosed, and so I decided to read up on how to support people with autism and eventually fell into a hole of reading about myself. It’s a really weird experience. There’s plenty of thrillers that start with someone reading a book about their life, so I was a little on edge, but also was shaking Tim awake at 8am on a Sunday morning telling him to read the twenty articles I’d read that morning.
From there, I had to be sent to the psychological sorting centre for Hammersmith (because the GP couldn’t send me directly to an assessor who diagnosed adult women) where I had to beg a psychologist (we’ll call him Psych 1) several times over two 3 month apart appointments to send me for an assessment. He appears later.
In early 2016, I started seeing an assessor once a week for an hour over a six week period, after which she decided I didn’t have autism. There are several problems with this. The first one being that it is strongly recommended that diagnostic testing is done in one day, as you go back and forth a lot, and interruptions beyond short breaks are not ideal. The second was she only ever saw male children and referred to me as “the most complex case she’d ever seen.” Autistic women are enormously under-diagnosed because the testing is skewed to pick up male traits, and if you’ve seemingly never met an autistic woman before, you might not recognise them.
I was sent back to psych 1 who said he’d refer me for therapy and began talking to me (again) about borderline personality disorder, a condition I’ve thoroughly investigated but do not match.
Meanwhile, I decided to start a fundraiser to go get a private assessment with a friend’s therapist. I raised half the money I needed within 72 hours.
While waiting for my assessment, I saw Psych 2. Psych 2, the man who was going to sort therapy with me, greeted me, sat down, apologised that people had assessed me up to the eyeballs and had missed that I was obviously autistic. Honestly it was the most comforting thing to hear from someone who knew. He told me I should pursue my second assessment privately.
Psych 1 received a report from Psych 2 that can be summed up as “stop telling her she has BPD, she quite clearly has autism and this deliberation is harmful.”
I was due to have my assessment in September but one of my assessors was rushed to hospital, so it was pushed to the 10th of November. Over four hours, they questioned me and my parents about how I experience the world. It was important, but also painful. I had to talk about the bullying, physical and sexual abuse I have experienced in my life, the fact that I’m socially naive and unable to perceive the switch between good friendship and unsafe behaviour – a pattern which persisted until my early 20s and still haunts me. My parents sobbed as they told me of incidents I have no memory of, where I screamed horrible, terrible things at them, and then five minutes later came into their room and asked why they were crying. It was a lot.
When that email came through, I think all of us felt validated. I told my parents over the phone that they had parented an autistic child without any help or guides, and that they were superstars. They cried, but I’m pretty sure it was happy tears this time.
I’m still feeling that high. Before my assessment, a kind stranger called Julia reached out to me. A sibling to an autistic adult with late diagnosis like myself, Julia told me to remember that however I felt afterwards was valid, and that I needed to give myself space to feel that. I’ve purposefully planned very little this week, though I’m spending the next two days in zoos because I think I deserve a treat.
There is a sense of mourning creeping into the background. Would the bullies have done what they did if they knew I was autistic? Much of their bullying took advantage of the fact that I wouldn’t understand them being nice one minute, cruel the next, and so would never leave. That is intrinsic to my autism – I cannot perceive other people’s behaviour or emotions well, or sense their intentions. But would I have been protected?
Past is the past, sadly, but what I can say is that I feel ever so protected now. When I announced on Twitter that I’d got my diagnosis, auties across the world reached out to welcome me to the family. I am lucky to know some wonderful autistic people that completely ~get what I’m feeling and I love that Twitter has facilitated so many of those friendships – a space where we can interact with people but not have to worry about stimming too much, or looking at someone in the eyes, or being overstimulated in an unfamiliar environment.
I’ve got a lot to learn in terms of managing and coping, but now I know who I am, I know my strengths and my weaknesses and most importantly, my hard limits. I am going forward in life with this knowledge and that is the most valuable thing in the world.
Finally an enormous thank you to my family, my close friends (particularly the Cat Sick Crew) and Tim, without whom none of this would have been possible.