You Gotta Fight For Your Right To ASD
What’s in a label?
I recall a few years ago a student commenting on his own idiosyncrasy, “well, that’s your Autism,” I replied. He was part of a Pride group I ran and about half the students were neurodiverse.
“I’m not Autistic!” He shrieked in protest.
Some time later there was a staff room conversation in which numerous colleagues were discussing said student’s glaringly obvious position on the Spectrum. Most of us agreed we had never come across a young person who displayed all the typical traits so clearly. How had this not been picked up, I wondered aloud. And it transpired that his father was dead set against a diagnosis, seeing this as some kind of slur on his character, on the family name, even.
I was 47 when I embarked on my quest for an ASD diagnosis. Why, now, was this suddenly so important to me? After all, even if I was, it certainly hadn’t held me back. I was a fully functioning, responsible (just about) adult. I had just bought my own house. I ran my school’s media studies department single-handed.
It started with a Miss
A couple of years prior to this, I was working in the English department. I had a top set Year 10 class and I was assessing their speaking and listening skills. Each student had to give a short spoken presentation on the topic of their choice. I was staggered by just how many of them chose to talk about their experience with Mental Health or their sexuality and gender identity. And there was another common thread among these brave, personal accounts: the lack of support in school. I mulled this over for a few days and then decided to ask these students if they would like to establish a support group. Our Mental Health and LGBTQ+ Ambassadors’ group was born.
Initially, I felt fairly unqualified to lead the project and to be honest, this was not a problem as a small number of students really took the reins, and soon came up with a clear mandate for raising the profile of these issues. They conducted surveys, they wrote an assembly, they wore their shiny new badges with Pride. I learned so much from this group of passionate radicals. I learned that I was non-binary. I went from Miss to Mx. And this was the start point.
Education is key
Around the same time, we had a staff training session on Autism; something I thought I was fairly qualified to recognise and understand. Before entering the teaching profession, I had supported adults with Learning Disabilities (many of who were Autistic); I remember reading Donna Williams’ accounts of her experiences and being fascinated by the condition. But this session was different because the providers spoke about subtler traits that I had never previously associated with Autism: a lack of spatial awareness, poor sense of direction, difficulty with coordination and sensitivity to temperatures in particular caught my attention. I always had an affinity with people with Autism. Some will say we’re all on the spectrum to some degree and I certainly had significant tendencies: rigid adherence to rules, self-imposed routines, a social awkwardness that in some situations has been debilitating. I spoke to one of the team afterwards to ask what I should do if I thought I might be Autistic and she said I should make a self-referral to my GP in the first instance and also recommended I looked up Sarah Hendrickx.
This was when I learned that Autism presents differently according to biological sex. Little girls, according to research, will mimic others to try and ‘fit in’; they learn to mask their differences. I recalled how I used to try to walk like my friend Janine at school (she was pigeon toed); I recalled how I went out with her ex-boyfriend the second she dumped him (with literally zero awareness of how weird this was); I recalled how I convinced my mum that I needed braces (Janine wore a brace to correct her overbite). It’s difficult trying to look back at yourself as a child from a late-forties perspective with any sort of objectivity, but armed with a new collection of books on the topic (now sitting next to Donna Williams) I attempted to retrace my developmental steps, looking for the signs that were there long before I had heard the word ‘Autism’. In the same way that I read the testimonies of non-binary individuals and mapped my own experiences onto theirs.
But I HAVE empathy!
One of the reasons I never seriously considered myself to be Autistic before was because of oversimplified myths and stereotypes that dominate mainstream representations: a lack of empathy, inability to make eye contact, encyclopaedic knowledge of a niche topic, inability to imagine anything beyond the literal, having no sense of humour…
So, I may struggle to always see your point of view, this might take a little work, but my empathy in certain situations is actually so intense it hurts. If an animal (be it next door, in a work of fiction, or in a Twitter campaign) is being harmed I physically FEEL for it. I sob. I am compelled to help in any way I possibly can. For example, during lockdown one, I was walking the dog and I came across a pigeon on the local park that was struggling to flap itself off the ground; it was dragging one wing like a kid dragging their coat on a hot day. I dropped the dog off and returned to the park with a blanket and a box. After catching the poor bird, I made it as comfortable as I could in my garage. I offered it food and water. After the initial victory rush that I had clutched the casualty from the jaws and claws of the local alley cats, I had to face up to the fact that all I had in fact done was to prolong the suffering of the wretched thing. I rang my mum for advice and after wailing at her that I absolutely was not going to ring its neck or hit it with a brick, she suggested we take it to the vets. All the way there I nursed that pigeon. I felt its tiny heart beating far too fast. I felt guilty for undermining the Law of the Jungle (or in this case, Chippy Field). I cried all the way home.
And I can look you in the eye.
The tricky thing is knowing how long for. The whole time I’m in conversation with someone, I am conscious of where I’m looking, I’m wondering, ‘do they think I’m staring? If I look out of the window, am I being rude?’ Often it impairs my ability to follow the conversation because I’m concentrating so hard on controlling my gaze that I lose track of what they’re actually saying.
I am in awe of Savants because names and dates (and even words sometimes) often elude me at the most inconvenient moment – usually when I am teaching. There is no single interest I have spent my lifetime obsessing over, but I can easily become fixated on a topic I’m researching to the extent where I lose all ability to prioritise. I can suddenly realise I have a class in ten minutes that I haven’t fully prepared for because I’ve been stuck down a Google rabbit hole trying to find a specific article I read months ago that I neglected to hyperlink.
When it comes to imagination, mine is overactive. I often feel more affinity with imaginary characters than real life people – especially in the books and TV shows I invest most of my spare time in. When Glenn died in Walking Dead (after all those times he dodged apparent certain death) I literally grieved him. I have known real people who have died since whose passing has not affected me anywhere near as hard.
There’s a famous line in ‘Harry Met Sally’ where the late, great Carrie Fisher tells her new husband that, “everybody likes to think they have good taste and a sense of humour,” as she berates his poor choice of coffee table. So my own appraisal of my sense of humour may not be reliable, but I can certainly ‘get’ the joke at least some of the time. Satire is my bag. From Swift to Vonnegut to Brooker, if it takes a clever pop at the establishment, I may not be LOL’ing exactly, but I’ll at least grin or smirk in the right places. By the same token, the simplest visual gag can have me stumped. I remember once my sister sent me a meme which featured a dog that looked very similar to her grey Staffy and a guy in trackies and a cap, who I immediately assumed was her ex-partner. There’s another dog on top of the kitchen cupboards, with a caption along the lines of ‘I’m not coming down – already been walked enough today’. Without reading, I immediately messaged back to ask when she got a second dog!
The gender correlation
I think for some people my ‘coming out’ as non-binary (which included changing my name, title and pronouns) coincided a little too conspicuously with me seeking my Autism diagnosis. For them it seemed I had become too self-obsessed, too needy for labels. I have considered this from a chicken and egg perspective. If I’d not become involved so closely with the LGBTQ+ community, if this hadn’t resulted in me undertaking Stonewall training, if this process hadn’t unearthed a culture of homophobia and transphobia that I’d previously been fairly unaware of: would I have realised I was non-binary? Or would I still be trapped in an abusive relationship, trying to ‘be more feminine’, trying to live up to the expectations of others? Did my obsessive need to learn more and more about the gender spectrum (in order to offer appropriate support) somehow ‘turn me’ non-binary? Or did a lifelong feeling of not fitting in when it came to my gender identity somehow lead me down this path? Give me an affinity with these students and their needs (which were not being met)?
As a kid I was always perfectly comfortable being a ‘Tomboy’. My Mum’s family (who we rarely saw) would always ask me when I was going to get a boyfriend; they bought me dolls and couldn’t understand why I hid them down the back of the sofa and went back to my trains. I vividly remember telling them I was never getting married and never having babies. “You’ll change your mind,” they’d tell me with a knowing smile. But I knew different.
Until I approached teen hood. At this point I remember the kids off our street (mostly girls) wanting to engage in role play scenarios (based on the previous night’s episode of Dallas or Dynasty), in which I was always assigned the male parts: the father / husband / brother. It was around this time that some of them started taking an interest in boys. It got to a point where I seemed to be the only single girl in the school (this was my final year in Primary; looking back now I can see how utterly ridiculous this was). Despite having zero interest in actually having a boyfriend, despite having no clue what to do with one if I had one, I set about my mission. This entailed sending some random girl from boy to boy asking them if they’d go out with me in exchange for a 10p mix (for the girl – I wasn’t contemplating a career in prostitution). There was no rhyme or reason to my choices, I just pointed across the playground with a, “now him,” directive.
Did I mention education?
And if I’m honest, every single relationship I ever had was pretty indiscriminate. More a case of ‘he seems to want me,’ than my own feelings. Another label I acquired late was Asexual. And I’ve gone through the chicken / egg dilemma on this as well. Did a series of unhappy relationships involving sometimes unwanted, painful intercourse turn me off sex, or was the reason I didn’t ever really want or enjoy it because I was Ace? I embraced this label a good while before I got my diagnosis and it was one more piece of the jigsaw for me; a recent study found that Autistic people are 8 times more likely to identify as asexual than neurotypicals and while 5% of cis gender individuals are Autistic, this rises to 24% in gender diverse people. This is why we must educate our young people about the vast spectrum of identity, so they are able to find their niche and find acceptance. If I knew there were so many alternatives when I first began questioning my place in relation to the societal ‘norms’ and expectations, how different my adult life might have been. I might not have felt like a fifty-year-old trapped in a Smiths lament on teenage angst.