The first time I heard about anyone self-diagnosing autism or ADHD was in a work environment. The union had been pushing my employer to provide assessments for staff who suspected they may be neurodivergent because the waiting lists for a screening on the NHS can now stretch for years.
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.
You cannot self-diagnose autism or ADHD any more than you can diagnose yourself with Parkinson’s disease or schizophrenia. To suggest that you can reduce neurodivergent conditions to the status of a self-help quiz or deciding what “season” colour palette you are. We are already fighting a vicious narrative that ADHD and autism are being “overly diagnosed,” and that “everyone has that now,” without waving anyone who has ever had an impulsive thought through the gates unchecked.
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!
I am well aware that what I am saying is going to really upset some people, but it still needs to be said. We are in a terrible catch-22 situation when it comes to professional diagnoses. As awareness of neurodivergence has grown, so too has the demand for assessment, but the NHS’s ability to meet that need has not.
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.
This has fuelled a booming industry in private diagnosis, which can cost anywhere from a few hundred pounds to several thousand, depending on what you want to be assessed. This, I suspect, was the reason my former employer didn’t want to pay for staff to receive a private assessment.
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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There are many conditions where one may happily diagnose themselves, coughs, colds, and hay fever amongst them. Basically, anything you can buy an over-the-counter treatment for is fine. But you cannot diagnose yourself with a serious neurological condition, and if that sounds like I am “gatekeeping”, it’s because I am. I am gatekeeping this like Gandalf on the Bridge of Khazad-dûm.
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.
The article points out that self-diagnosis can not only led to a “misunderstanding of a diagnosis” and an “over-pathologising” of symptoms, but can also “delay access to appropriate interventions, potentially worsening the individual’s condition or making them feel something is wrong when it is actually on the typical end of functioning”.
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”.
The researchers linked an increase in tic severity and functional tic-like behaviour (FTLB) to an increase in social media use. They pointed out that many of the newly presenting cases of FTLBs were young women with no family history of the condition, and that their tics often mirrored “many of the tics seen on popular social media channels,” despite being atypical in Tourette’s. In other words, people were being subconsciously influenced by what they were seeing on social media and manifesting similar symptoms in themselves.
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?
This is why it is essential to have a professional medical diagnosis of any neurological condition. So many of the symptoms a psychiatrist will be on the lookout for can present in other conditions, such as anxiety or depression. It takes a lot of training and experience to understand what is really going on, and it’s not something we can do for ourselves.
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.
I fully understand the desperation many people feel when it comes to getting a formal diagnosis. For many, self-diagnosing may feel like the solution. It can provide a sense of identity for someone who may be just starting to form theirs, or allow someone to feel that they are part of a community. But neurodivergent conditions aren’t an identity; they are disabilities, and none of that makes it acceptable to diagnose yourself.
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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