“There has not been a time that I remember this not being a part of my life” stated Lydia, 19, from Somerset. She has been on the system to be diagnosed with autism since she was five-years-old, now turning twenty this year, she received a letter last year that her assessment for a diagnosis will begin in 2027. Experts have told the BBC that thousands of children are on “hidden” waiting lists for autism and ADHD assessments.
Furthermore, for children and young people in England, referrals to autism services (which precede diagnosis) have more than doubled from around 397 per 100,000 in January 2022 to around 1,077 per 100,000 by December 2024. According to Neurodivergence Wales data, the past five years we have seen a 133% increase in the number of adults seeking an autism diagnosis in Wales. Due to this Lydia has resorted to a self-diagnosis.
A Cambridge study has shown that there has been a significant rise in the self-diagnosis of neurodiversity’s such as autism, which in the dictionary of definitions from Oxford languages, is a neurodevelopmental condition of variable severity with lifelong effects that can be recognised from early childhood, chiefly characterised by difficulties with social interaction and communication. Self-diagnosis can be identifying a medical or in this case a mental health condition in yourself often through online resources, social media and personal experiences.
The 19-year-old stated “Self-diagnosis is really difficult in my situation as I don’t want to say I am self-diagnosed because people look at you awfully when you say that because some people fake having something. But in my situation I don’t have the luxury of a diagnosis.” This is how many individuals feel due to bad ‘trends’ on social media platforms such as; Instagram and TikTok of autism and ADHD.
One US survey found 25% of adults believed they might have undiagnosed ADHD; many of them had not sought a professional diagnosis. Sometimes, though, self-diagnosis can be extremely damaging. Autism and ADHD overlaps with many other conditions, such as; anxiety disorders, depression, trauma or PTSD, learning differences and sleep problems. In fact, majority of Britons may now identify as neurodivergent, King’s College London cognitive neuroscience professor Francesca Happé says.
“I think hundreds of people have thought they have something that they don’t since covid-19. I think during covid a lot more people became aware of things such as Autism and ADHD. It was an environment that not a lot of people have ever, ever been in. Isolated on your own, left to your own devices, consider everything you have done in your life, think about how your brain works and how you are socially” – Lydia states.
Covid-19’s lockdowns unmasked symptoms for many, these revealing struggles prompted people to seek help – states Nuffield trust and BBC. The National Autistic Society said diagnostic criteria had been “shaped around the stereotypical ‘male’ presentations of autism” meaning “a generation of women” had lost out. This is due to people high-masking all their lives – which can happen in both men and women – but women more specifically camouflage 3-4 times more than men do, and some specialists believe that females with high levels of testosterone are more likely to be diagnosed with autism due to this.
Lexi, a recent interviewee stated – “When I was 16-17 I went to a concert and really struggled with the level of noise, it seemed to bother me and not anyone else and my friend said ‘it’s a concert of course it’s going to be loud’ this was the first time I ever considered it and I started doing some research. I was referred when I just turned 17, I was on a waiting list but when I turned 18 I was told to ‘rejoin’ the waiting list from the start for adults so in 2024 my family booked me a private diagnosis, I was diagnosed in August 2024.” Chronic NHS backlogs have led to a 7% rise in private admissions in 2022-2023.
The NHS faces a significant backlog in autism assessments due to a surge in requests. But not only autism, it is estimated that 2.5 million people in England have ADHD, including those without a diagnosis. Some NHS services for ADHD have closed their doors to new patients because they are struggling to cope with the demand – according to the BBC. What’s more, hundreds of GPs across England also told the BBC, nevertheless, they think mental health problems are being over-diagnosed.
Due to these ‘allegations’ of over-diagnosis, to develop further research into what solely young adults think about the significant rise of diagnosis’s since 2018 an anonymous online survey was created. One participant said “If you feel as though you may have autism or ADHD, don’t self-diagnose, take yourself and get in the waiting list for a diagnosis. This can be a good thing as undiagnosed people will then get results, however it could put more of a strain on the NHS unnecessarily due to people making assumptions based off their favourite influencer’s words”.
Another, told us “Lots of young people use these platforms and look up to influencers, these conditions are not desirable things and they’re being made to sound ‘quirky’ and ‘different’. Also men using ‘autistic women’ on dating sites like it is a desirable thing, when in reality they’re uneducated and just want a girl with a personality!”
A recent interview with a student from South West England – who was diagnosed with autism at the age of 16, voiced “Only a few people know about my diagnosis, it’s not something I want everyone knowing” he continued “people think that having autism means you have superpowers but I think I am normal at most things, I can navigate to read peoples social cues”.
He added “People don’t have hobbies anymore, we need to be creating a culture of living, they are bored and thus create a new personality, what’s most important, to me, is not labelling people – but offering support to those who want it, or need it due to more severe diagnoses”.
Studies link social media use to memory issues, poor sleep and academic struggles. Social media also activates the brains ‘feel-good’ chemical by releasing dopamine; so when you post e.g. on Instagram and someone likes that post it can give us that dopamine ‘boost’. Although this can also make you feel that others are living better lives than you from seeing other posts. This then in-turn impacts your self-esteem leading to triggers of anxiety and depression that can overlap with many symptoms of Autism and ADHD.
In this recent survey, which asked about the links in social media and the rise of self-diagnoses in autism and ADHD, another added “I think in an ever changing world with such a dependence on the internet and social media especially, it has become a sort of blanket term to diagnose something as ‘autistic’ or describe a behaviour as ADHD rather than to know a person as an individual. I think it could potentially be a coping mechanism for some, I myself included, as I sometimes find myself wondering if I’m feeling a certain way or if I’m unable to unwind properly due to an undiagnosed mental condition, when it’s likely just that I’ve had too much caffeine that day. This is why I describe it almost as a blanket term, a psychological coping mechanism to dismiss or even justify behaviours or patterns in each other.” Dr. Rose notes “Social media seemed to reduce feelings of isolation. It also normalized and validated our experiences.”
News reports have suggested that social media platforms, such as TikTok have contributed to the increase of self-diagnosis of ADHD and autism. A study done by the Canadian journal of psychiatry found that over half – fifty-two percent – of the 100 most popular TikTok videos had content that could be classified as misleading.
Lydia, also mentioned “Not everyone wants to be treated differently because of a diagnosis, I think if you are so determined to do the right research to help yourself, a self-diagnosis can be good but it can also be really, really bad. I think it’s quite a double edge sword as often people misdiagnose themselves, which of course is going to happen.”
Studies from the US revealed that from 2019, 65% of US adults have regularly used the internet for self-diagnosis. During another recent interview, Katie – who was diagnosed with autism and ADHD expressed “I believe self-diagnosis is good in a way if you’re taking the right steps to speak to psychiatrists and professionals in the long run. Especially if you have done enough research using reliable sources. I don’t agree with self-diagnosing if it’s something someone has done through scrolling on social media or taking an online quiz, I think that’s very harmful and mocks the community.”
In fact, just like with everything there are positives as well as the negatives in the self-diagnosis of autism and ADHD. The increased self-awareness to understanding your condition can be extremely beneficial to help improve peoples communications and social interactions and also how to manage their everyday lives. Though not self-diagnosed – Lexi for example said that fidget toys and rest breaks helped her in her A Level exams compared to her GCSEs where she really struggled, Lydia, now does her own food shop separately to her family so she isn’t being “picky”. Katie stated that since starting therapy and counselling she can talk freely without thinking she is being “weird” or “annoying” she added it’s “really freeing.”
But for some that have been officially diagnosed, the negative stigma of having Autism and/or ADHD – especially due to the media, has made it hard for them. Katie equally has found it difficult she said “It’s a lot harder to find employment or be taken seriously in the workplace, as soon as you state you have autism or ADHD they think you’re too much and choose someone neurotypical over you.”
‘Many autistic adults are not in employment, or find difficulties accessing support at work’ states the Health Watch Hertfordshire, they also mention that ‘we need to make autistic adults aware of the reasonable adjustments they are entitled to under the Equality Act 2010.’
But then for some it hasn’t really affected them positively nor negatively. Another added that “It hasn’t really changed my life, it’s been 3 years since my diagnosis. I think the advice is far too general given by mental health nurses.” Healthwatch Hertfordshire recently mentioned, ‘In our Support for Autistic Adults Report, people told us that after diagnosis they often felt like they were left on their own to process a life-changing diagnosis and struggled to navigate services or find support.’
In fact, on the national autistic society’s website they outline that ‘Having an autism diagnosis does not mean you are automatically entitled to formal support from professionals’. However, having said that, they have many services to find local resources and make complaints.
The Autism Project by Care Trade, though not specifically mentioned under the 2010 Act, is a full-time employability program designed for autistic young people aged 18-25, they focus on personal support for individuals to enhance their skills and confidence for entering the workforce. After not long ago, contacting them, they said they ‘offer a number of programmes and for some of them they do not require evidence of a diagnosis.’
So what about those with a late diagnosis? If you feel as though it would be beneficial to talk to others with the same diagnosis, the National Autistic Society offers a Facebook group as there are many are many people with experience of autism offering support and sharing their stories, states NHS England. In addition, In England, Wales and Northern Ireland, the National Institute for Health and Care Excellence (NICE) guidelines state that following a diagnosis, you should be allocated a named key worker who can work with you to develop a personalised plan. The key worker can be a member of any relevant team, and sometimes may be your GP.
This goes for those who are diagnosed with ADHD too. The NHS provides a range of services for treatment, including medication and therapy. ADHD is short for attention deficit hyperactivity disorder meaning your brain works differently to most people, for example, you may have trouble concentrating and sitting still, due to inattention, hyperactivity and impulsivity. Getting a diagnosis and treatment, which can include medication and psychological therapy, can be life-changing, experts say. Though the average wait time for ADHD medication has increased by 18 percent year on year.
As well as that, NHS data shows that the average waits of a diagnosis is eight years for adults and four years for children, once on the list. After speaking to, Max – we will call her, from London, said that “Whenever I encounter anything that I can’t solve immediately, I just put it away.” She added “Even with my masters I would submit coursework five minutes before the deadline, I tend to leave things to the last minute”. She expressed that she’s been struggling for a very long time, since primary school. She as of yet, has not been diagnosed and is in the process of getting a diagnosis – this has been for around two years now.
Researcher Jessica C. Agnew-Blais, ScD says ‘Adult ADHD is more complex than a straightforward continuation of the childhood disorder’. ADHD in women can often get diagnosed later in life. The researcher suggests this could be because of symptoms being masked in childhood due to protective influences.
Max said “I felt like I was such a failure so many times throughout my four years of undergrad and it really took a toll on my mental health and self-esteem.” She added, “it’s not just my study life but also my work and personal life balance, it feels like it’s obstructing my growth.” Waiting times for ADHD and autism diagnosis and treatment can significantly affect mental health.
People aren’t able to get the help and treatment they need, the NHS is under pressure and social media is coining mental illness’s as a ‘trend’. So where as a country do we go from here?