The solution the employer came back with was that they would recognise self-assessment and make the required adjustments. On the face of it, this seems like a remarkably progressive, almost compassionate approach, but I will tell you exactly what I told them: it’s a cop-out.
And yet, I am seeing self-diagnosis more and more. When I was a university lecturer, every year I would see students who hadn’t been formally assessed but simply felt “sure” they were neurodivergent. I’ve attended neurodivergent self-help groups that don’t require attendees to have any kind of formal diagnosis. I’ve even seen hospital websites in the US that talk about self-diagnosis as being a “personal choice”. While I understand this approach removes a lot of barriers to the support people need, those barriers are actually quite important!
The current waiting list in Leeds (where I am) for an autism assessment is around 27 months. That’s for the very first appointment, by the way, not the assessment itself. The Leeds NHS ADHD service was so overwhelmed by demand that in October 2024, it had to stop taking new referrals so the clinic could start to work its way through a waiting list of over 4,000 people. Leeds is not unique; it’s the same story all over the country and worse.
The lack of NHS clinics and pricey private ones has combined into a full-blown crisis for countless people who now simply cannot get assessed by a professional. Then there is a historical lack of trust some marginalised communities feel towards the medical profession and “big pharma”, but self-diagnosis is not the answer. It is dangerous.
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I was diagnosed with ADHD on the NHS years ago, before the waiting lists exploded, and I fully recognise what a privilege that was, but this is not me pulling the ladder up after myself. There is growing concern amongst the medical profession about the dangers of self-diagnosis, especially amongst young people. So much so that in 2023, Johns Hopkins All Children’s Hospital published an article cautioning parents against letting their children diagnose themselves with mental health conditions.
There is a strong correlation between social media use and self-diagnosing neurological conditions. In 2022, an article published in Psychology Research and Behavior Management found that “perceptions of Tourette syndrome (TS) and tic disorders are often driven by social media”.
Neurodiversity is all over social media, and for me, this is very much a double-edged sword. On one hand, it is wonderful that more information is out there and that people are being encouraged to get a diagnosis, but on the other, the quality of that information is terrible. One study found that only 21 per cent of the ADHD content posted on TikTok is actually useful – the rest is either misleading or anecdotal. If social media is so powerful that it can cause a spike in copycat Tourette tics, what else is it doing?
Nor is it appropriate to diagnose other people with any kind of neurodivergence, no matter how “obvious” it may seem to you. The only people who should be doing this are psychiatrists in a clinical setting.
The real answer is to push for more government funding for NHS assessment centres. If I could wave a wand and make sure everyone who needed it could access support, I would do so immediately, but the issues are too serious to countenance having a go at it yourself.
Ultimately, self-diagnosing trivialises the complexity and severity of these conditions and fuels the stigma that all of this is made up anyway.
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