Musings on Neurodivergency #3: In Defence of Self-Diagnosis

A week or so ago, during one of the many evenings I got stuck strolling through Instagram, I saw a reel from the BBC essentially deriding self-diagnosis of neurodivergent conditions such as ADHD and autism. Now, if people self-diagnosed on the basis of a handful of vague TikToks without further thought, as the reel suggests, I could somewhat get behind that. Some of the “signs you might have ADHD or autism” TikToks I’ve seen have listed the most generic, wide-ranging list of symptoms possible. But self-diagnosis isn’t that. These TikToks are often just a starting point.

I don’t actually remember where I got the idea that I might have ADHD. The first thing I remember related to it was reading through the list of symptoms on the NHS website and feeling a cautionary sense of relief that I wasn’t just stupid, lazy, or weird, but that there might be an actual reason why I was struggling the way I was. The way I had my whole life. This moment wasn’t the end of my research like the BBC reel would have you believe, but only the beginning. Months followed of reading websites about the condition, reading anecdotes from people with the condition, speaking to those close to me to see if they thought it could be true, taking tests, struggling through medical papers about the condition, applying management strategies to my life, thinking through my childhood in search of indicators of the condition. It took months to convince myself that this could be it; that I had a right to seek medical help. Some form of self-diagnosis was required to get me to that point. ADHD and autism aren’t like physical issues in that you can go to a doctor and describe what’s wrong with you and they’ll piece it together (I acknowledge I am massively simplifying here, and that it doesn’t work like this for many groups). If you don’t say that you think you have ADHD or autism, instead opting to describe symptoms, you will just get fobbed off with a diagnosis of depression or anxiety and maybe some anti-depressants. Simply saying that you think you have ADHD or autism isn’t enough either. To get past the first doctor I spoke to I had to justify why I thought I had ADHD. How you’re supposed to do that without self-diagnosing in some form first I don’t know.

Furthermore, the reality is that, for some people, self-diagnosis is their only option. Knowledge of ADHD and autism still predominantly focuses on white males, leaving those of us who are not white and/or male highly likely to go undiagnosed officially. I may be told I don’t have ADHD when I finally get my assessment, but that is highly unlikely to change my opinion without good reason. I know that the Sertraline didn’t fix me; I know that it isn’t just anxiety; I know that my mood swings are not bipolar disorder. I am the expert on my brain having lived with it for 22 years, not someone who’s going to speak to me for an hour and is likely biased against diagnosing people who are not men. Doctors can’t even really decide what the criteria for conditions such as ADHD and autism are anyway. Sensory issues have hokey cokey’d their way in, out (and shake it all about) of the DSM for autism for years now.

I’m not sure what all the fuss is about, anyway. Self-diagnosis doesn’t get you anything. The university will not help me until I have an official diagnosis, even though I’m struggling. You don’t get accommodations made, or medication handed to you. Self-diagnosis is harming precisely nobody because it is impacting exactly nobody except for the person scrabbling around for some sort of understanding of the chaos in their mind. That’s why I self-diagnosed. I’d spent 21 years struggling to keep any semblance of order in my life, trying on different mental health diagnoses, and only ADHD was comfortable. I am lucky enough to be able to pursue an official diagnosis (that will take a minimum of two years from when I first officially started this process, but never mind!) and am doing so, but what am I supposed to do in the interim? Just pretend I have no idea about this condition for the two-year period? Exist in some paralysed Schrodinger’s cat universe where I both do and don’t have the disorder? I don’t only have the condition from the minute I get my official diagnosis; I had it all this time. There is nothing wrong with putting a label that I have thoroughly researched on it before that moment. The urge in this country to deny people any semblance of help if we haven’t first deemed them “worthy,” even if it’s just them helping themselves, is horrifying. If the likes of the BBC are so against self-diagnosis they should focus on helping end the need for it. Shorten assessment waiting times. Expand research on neurodivergence on people who are not white males. Remove the negative effects of an autism diagnosis, such as increased distrust of peoples’ parenting ability and decreased ability to emigrate. These are the things that will actually end self-diagnosis.

Briony Taylor

(Musings on Neurodivergency is a monthly column by Briony Taylor, exclusive to Stay tuned for more instalments!)


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