There's been a lot of discussion about the validity of neurodivergent self-diagnosis, including a fair bit of fuss about the notion that there is a whole swathe of people faking their disability for attention, so I think it's a great time to dissect a few fun topics such as representation, intersectionality, prejudice and privilege (this post is unapologetically long).
Tl;dr for the people at the back: cracking down on perceived fakes has unintended consequences. If you don't know what you're talking about, what is "believable" is not for you to decide.
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To those with concerns, a few questions. What was your first encounter with disability? A joke in a movie, perhaps, or an insult you heard at school?
Incidentally, did you know the brain uses your first impression as the foundation for your understanding of any concept? This can be tricky to reflect on (we all have a built-in resistance to changing our minds), but if you are comparing the people you see online to Rain Man you might have some catching up to do.
There's this insidious notion of being "reasonably disabled". People tend to go for an all-or-nothing dichotomy without really thinking about it, which is detrimental to literally everyone in between. Personally, I think it has something to do with our discomfort around being bad at something. As if being blind was somehow more legitimate than having poor eyesight - it sounds ridiculous, but tell me there isn't a part of you that thinks this way.
Likewise, there are plenty of neurodivergent folk that are able to function in society, but will not quite match up to the neurotypical standard in certain contexts, whether we lack the performance skills or just have a different taste in things. Y'all seem to be having difficulties translating a theoretical understanding of this into not cringing like we're bringing down the average grade.
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Okay, but aren't we talking about a medical diagnosis? Surely that should be left to the professionals? Yes & no. Hope you don't mind that I explain with the help of anecdotal evidence.
I am at a point where I am feeling pretty good about how I identify, i.e. officially diagnosed with adhd, and self-diagnosed as autistic. Through a combination of digging through online resources and a whole lot of recuperation, I've been able to put many of the struggles I was fighting blind with into a framework I am able to understand. I feel more like a person than I ever have in my life, and that, for me, is the greatest benefit of a diagnosis, official or not.
While I am certainly not ruling out seeking a doctor's confirmation of my autism at some point, there is some trepidation involved.
A non-trivial part of this is my adhd diagnosis experience. This was during the pandemic, I was just coming to terms with being burnt out and was so so ready to finally get some answers as to why. An immigrant (read: used to paying for healthcare) living in the UK, I naturally opted to seek guidance and support from the National Healthcare Service at this vulnerable time in my life. If you're familiar with the NHS, you can probably guess how it went to bother this already overwhelmed and underfunded organisation that definitely did not want to deal with my trauma dumping.
After being coerced to try an SSRI "to find out what's under all that anxiety" and having a terrible time with it, plus feeling legitimately gaslight in my pursuit of getting to the bottom of what it would actually take to get approved for an assessment, I found out about my right to choose and swiftly obtained both my diagnosis and prescription via Psychiatry UK, a private organisation.*
A decidedly shitty experience overall, but I ended up with a lot of useful insight into navigating the bureaucracy, and I can safely say that taking (the right) medication has helped a lot with symptom management, and thus, life in general.
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Now, autism has been in the public eye much longer than adhd and has accumulated more research over the years, but its implementation is far from adequate, especially for autistic adults. Some of the studies that shaped the understanding of doctors practicing today betray the derogatory and/or infantilising beliefs of doctors of the past.
So I have concerns about the toll another clinical runaround might have on my mental health. It would take a lot of work, too - prior to assessment, you are more or less expected to build a convincing case for yourself, which means you have to do enough research to persuade a medical professional who may or may not be inclined to think of all this neurospicy nonsense is a waste of time.
Even if I did get approved for an autism assessment with the NHS, the waiting list is years (yes, years) long. Private care is prohibitively expensive, unless you're desperate enough. Or, you know, rich. I've seen prices in the thousands (yes, thousands).
I'm also unsure, in practical terms, what I stand to gain from an official diagnosis as opposed to, say, seeking out a local branch of the autistic community. Not because I don't trust institutions, but because "access to accommodations" rarely gets elaborated on further, and is not a guarantee. There are also situations where the label would create incompatibility where there previously was none - for example, certain immigration policies reject autistic people outright. Not that I'm thinking of moving to New Zealand, but still.
There's a lot to consider. I haven't gotten around to making an exhaustive list of pros and cons and I don't think I'll have the energy for it anytime soon. Please feel free to add your two cents if you'd like.
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Alright, so an official diagnosis isn't quite the no-brainer you thought it was, but "that doesn't excuse people labelling themselves for the fun of it".
Buddy. Friend. Kindred spirit o' mine.
We are doing this because we are having difficulty surviving in a world that wasn't built for us. I don't know what your definition of "fun" is, but I can think of a few other things I'd rather be doing than grappling with burnout and existential crises for half of my twenties - because that's what happens when you grow up being told that your lived experience isn't real. That you couldn't possibly feel this way, because the rest of the class feels fine.
People worrying about fake disabilities are still trying to fit neurodivergent content into a neurotypical point of view. They see someone trying to normalise the disabled experience and think: "If I did that, I'd be doing it for attention," then carry on to brutally mock them as some sort of righteous punishment for being too weird online.**
I have had to sift through a metric ton of trauma to build my identity back up from scratch. Really puts the "fun" in "dysfunctional". And believe it or not, I have had a relatively easy time of it.
About that intersectionality:
My trials as a disabled immigrant have been frustrating, but I'm also a young, straight-passing, cis white woman. People of colour go undiagnosed at far higher rates - their symptoms are overlooked more, and when they are recognised they are often misconstrued as threatening. Trans people get written off altogether, because transitioning apparently means there are no other medically relevant aspects of your life? Same thing if you're overweight.
I cannot speak with authority on these experiences, but I can say that defining someone by a single facet of their personhood is redundant and insulting, and causes real harm when that preconception bars access to the care they need. It's high time we put work into understanding how our differences interact, and hammer home the fact that intersectionality isn't the exception, it's the rule.
If there's one thing that's going to make it harder to recognise the signs of genuine neurodivergence, it's facing constant doubt. Which we do, about our struggles themselves, and the severity of them. The things that happen to us either happen to nobody, or they happen to everybody - so don't be such a bummer, it's neither the time nor the place, etc.
Maybe there is no adequate time or place for these conversations by design. Maybe the discomfort you feel has less to do with sensing pretense and more to do with rejecting something you don't understand. Maybe it's possible for us to think, speak, and act a little differently than you do, all while being sincere. Maybe letting us exist as we are won't make the world implode.
Food for thought.
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I'll end on this note, because there is always someone who needs to hear it: Whatever the rest of your life looks like, if you are neurodivergent, you are part of the community. I believe you. You belong.
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*In the case of the NHS being unable to provide adequate care, it is a patient's right to request access to an alternative healthcare provider, free of charge. This is known as the right to choose. I've linked Psychiatry UK because they have a comprehensive explanation (and they were nice to me), however their waiting lists have also extended into oblivion.
**Like when Chloé Hayden (actor, author and disability rights advocate, with diagnosed auDHD) received overwhelming backlash (after posting a video of herself displaying unmasked joy) that led to her stepping away from social media.
