I think I knew I was always a bit of a peculiar child. Yes, I had my quirks – completely losing it at the sound of a hand dryer at someone’s baby dedication, sleeping with dolphin books under my pillow, and being able to speak at one and a half, but not being able to jump until the age of five, to name just a few. But I was deeply surprised when, in sixth form, a friend with an autistic brother who was seeking diagnosis herself, suggested to me that I might be autistic.
Initially, I had written off the idea, as I didn’t see myself in my autistic peers or in media representations of autism. I had friends, albeit a precious few, and I struggled to talk to most people. As a student, I was a ‘pleasure to teach’ – because breaking rules was unfathomable to me, I had passionate interests, and I could hide my exhaustion until I came home and crashed. But, as I began to research, I came to understand that autism spectrum condition is, indeed, a spectrum. People have different needs, and their traits present differently. It became clear that I could, in fact, be one of those people.
The subsequent highlight of my rather unglamorous gap year was eventually being diagnosed with autism by the NHS, aged 18, after over a year of waiting. But the surprises didn’t stop there: the psychiatrist assessing me also suspected ADHD. 16 months afterwards, aged 20, it was signed off that I did have combined-type ADHD. And then, in a bitterly amusing buy-one-get-two free deal, my brain decided to have a spectacular flare of what I now know was lurking OCD, which had been quietly but brutally waxing and waning since my late tweens. I thankfully received proper treatment for this for the first time aged 19. But it was, and is, a lot to take in.
It might be easy to assume that I’m ‘hopping on a trend’. This idea seems to be gaining traction of late in the media – I had the misfortune of reading a particularly venomous article about ‘quirky’ late-diagnosed Oxford students during an especially rough week of symptoms last term. But I think a lot of people fail to understand that disabilities do not materialise when a doctor gives you a piece of paper with a word on it. Our issues are constant, whether or not we have the right language to describe them. And if we don’t have helpful language, we will resort to the only language we can find, which is often much less kind. In the 18, 19, and 20 years before I was diagnosed with autism, OCD, and ADHD, I saw my social communication differences, graphic intrusive thoughts and struggles with executive function as ‘weirdness’, ‘creepiness’, and ‘laziness’. Despite those who may urge us not to ‘label ourselves’ by avoiding diagnosis, we can unfortunately do a pretty good job of doing so anyway.
I am therefore so incredibly grateful for the shift in self-perception that my diagnosis has afforded me. Just having the language to make sense of my challenges has been life-changing. It has also opened up access to communities of people with similar challenges and experiences to me. Official diagnosis also meant that I was able to access university support. I still remember how shocked I was after taking an exam with official accommodations: for the first time, I wasn’t worrying about processing things too slowly or experiencing sensory overload, thanks to my extra time and a small-group exam sitting.
But diagnosis also isn’t a magic pill that solves all our issues. And it’s often not an easily accessible one, thanks to long NHS waiting lists, steep private costs, or ill-informed doctors whose understanding of this condition is somewhat limited to particular people. Even post-diagnosis, the odd tutor will still not quite understand that lateness doesn’t mean a lack of care. Some people may still glance and smirk if I ‘mess up’ socially. I am still often overly harsh on myself when I struggle to take care of my basic human needs in term-time. And just having a diagnosed disability can still be hugely stigmatised – so many people shy away from even just using the word ‘disability’.
If there’s anything late diagnosis has taught me, it’s that it can’t be the only thing we rely on for acceptance. It can be a critical piece of the puzzle, but what is even more important is how we as a society think about disability. Having a label can feel a little useless, even painful, if we still punish people socially for existing differently, expect constant productivity from them, or show them that their needs don’t matter. And this is especially important for the countless people who are trapped in unfavourable narratives about the way their bodies and minds exist. Do they not deserve understanding too? Didn’t I, when I was younger?
Being kind and assuming the best of those around us – be that a ‘fussy’ flatmate, a ‘flaky’ friend, or an ‘awkward’ lecturer – may seem like small gestures, but they can be totally revolutionary in creating a space where disability and difference are accepted and accommodated by default. A little more gentleness, community, and compassion would help us all, disabled and non-disabled alike, when we’re struggling.
