SINGAPORE: Where distractibility or restlessness were once considered normal childhood traits, now, they are more likely to be considered signs of autism or ADHD. That is one of the findings of an interim government report, following a review designed to establish why demand for NHS services is skyrocketing. ADHD diagnoses have more than doubled since 2021, while autism rates among girls rose sevenfold between 2010-2022 – figures that the report said could be the result of “institutional incentives” associated with being officially labelled as having ADHD or autism.
Despite rising figures, however, the report shows that the underlying prevalence of autism has remained stable over the past two decades: it is the diagnoses, referrals and identification that have significantly increased.
According to the review chaired by Peter Fonagy, clinical psychologist at University College London, a combination of factors including improved awareness of the conditions, “changes in help-seeking, institutional incentives associated with diagnosis, and changes in professional and public understanding” are responsible for escalating rates. It is these circumstances that are creating a divided medical landscape, in which “underdiagnosis, misdiagnosis and overdiagnosis are not mutually exclusive possibilities”, the review said.
Whether an official diagnosis of ADHD or autism is helpful or simply reinforcing what it calls “the increasing tendency to medicalise forms of distress” remains contentious. Dame Uta Frith, whose pioneering research underpins our understanding of autism, believes that the continued broadening of the autism spectrum means the term “has come to its collapse”, now too often characterised by diagnoses that are “completely meaningless” as a result.
One of the main issues in appropriately diagnosing patients with autism is that there is no objective, provable biomarker that confirms whether someone has it or not, she says. Those seeking a diagnosis must first go to their GP before referral to a clinician such as a psychiatrist. But without a biological blueprint for what the condition entails, “it makes it a social diagnosis, to some extent”, says Dame Uta. With an established biomarker, “we would know how many cases there are and when to start treatment – but we don’t have that. So that is why cultural factors come into the idea of what autism is”.
These include social media, she adds, on which many people extol autism as “a very desirable thing or a superpower, which of course is hardly true”. According to the interim report, nearly one in 10 young adults “self-identify” as autistic, while platforms such as TikTok often contain inaccurate information about the condition, further perpetuating this cycle. According to analysis published in the Journal of Social Media Research last month, 52 per cent of ADHD-related videos and 41 per cent of autism videos on certain platforms were inaccurate – figures that will do little to help those in genuine need of help.
In England, there are more than 200,000 people awaiting an autism evaluation and some have been told to expect a wait of up to 10 years. People wrongly believe they are affected after watching a 30-second video and this is weighing down an already overburdened system. As a result, the needs of many who are severely affected are not being met. “I feel very sorry about [that],” says Dame Uta. “They are being overshadowed and I think they really deserve as much help as possible.”
Dame Uta adds that the “meaningless” nature of nature of the autism “label” is such that people consider self-diagnoses and those received from a medical practitioner as of equal importance. Too often, she adds, it is used to provide “relief” for those who use it as confirmation “that I can’t change, I can’t do anything about it, that’s the way my brain is working. And that is a little bit sad, if you would give up trying to actually adapt”.
One GP of 40 years says that over the past decade, he has seen a considerable increase in parents bringing their children to appointments to secure autism and ADHD referrals. While some of the uptick in diagnoses is “totally appropriate”, he adds that much of this is driven by parents who are “struggling to understand their child’s behaviour”.
“And [they think] getting this label makes that much easier to deal with – unfortunately, it doesn’t,” he explains. “You can’t see a specialist and get an anti-autism pill that makes everything okay.”
The GP, who spoke on the condition of anonymity for fear of death threats for criticising autism “overdiagnoses”, says that the rise in rates of these conditions is part of a wider trend of pathologising everyday feelings.
“I really worry that everything is labelled as ‘something’ disorder, and that that can actually be counterproductive to people,” he says. That, and the fact “there’s huge variation in diagnosis rates between different countries [means] something odd is going on”.
Owing to the wide spectrum of symptoms that autism and ADHD can entail, there is no one-size-fits-all “cure” – just management. That can include prescriptions of melatonin to combat poor sleep; antipsychotics such as risperidone for irritability, or drugs like Ritalin to combat hyperactivity.
For parents in need of school support, however, receiving autism or ADHD “paperwork” for their children can be crucial. That was the case for both of Amelia Warwick’s* children, now nine and 12. When each was in Reception, she was told by their school that they probably were on the spectrum.
But while she went to their GP and had them placed on waiting lists for screening, the “brutal reality” is that seven years have passed without an assessment, leading her down the private route instead.
It was only once she had these – her son has been diagnosed as having ADHD; her daughter is autistic – that they were given “reasonable adjustments” at school, such as “movement breaks” for her son, who struggles with long periods seated in class; and extra time in exams, as “he’s got extremely slow handwriting and slow processing speeds”.
Excessive wait times for NHS help also mean that a lucrative private market for diagnoses has sprung up, which could further swell the figures. A 2023 BBC Panorama documentary found that patients who had failed to secure ADHD assessments through the NHS turned to private clinics that would do so instead, often resulting in accessing medication and EHCPs (Education, Health and Care plans, in many instances required by schools to provide extra support) that would not otherwise have been given.
These do not come cheap, typically costing up to £3,800 per child. Warwick has also paid for two educational psychology assessments per child, at a further cost of £4,000, selling her clothes in order to secure the paperwork their schools require.
She adds that blaming “pushy” parents for rising diagnoses of autism and ADHD in children “undermines the whole process – it makes it look like we’re incentivised because we’re trying to get some kind of unfair advantage”.
“That’s not the case at all,” she feels. “It’s more the opposite. You just come up against a brick wall, unless you can give the school the answers that they want.”
Other parents with neurodiverse children understand how important medical recognition of these conditions can be. One Telegraph reader, who, like Warwick, strictly limited screen time for her three children, says that after homeschooling “high-achieving twin girls, we struggled for years with our son who didn’t understand the passing of time; talked incessantly, became quickly frustrated, and couldn’t focus long enough to write a sentence”.
Things only changed two years ago, when “we reluctantly took him to a psychologist, who diagnosed him with ADHD. After beginning medication, his ability to concentrate was transformed and his confidence in his abilities has grown with it”.
As a result of being unable to access NHS help, however, the family is now claiming disability living allowance. (The rise of mental health problems in the UK has fuelled a spike in economic inactivity: the number of 16-34-year-olds out of work long-term because of such conditions jumped by 76 per cent between 2019-2024.) Receiving state aid is a necessity for many, she points out. “We don’t particularly like the label, the medication or receiving a benefit but recognise that all three have been very helpful in enabling our son to access his education.”
Fonagy’s final report is due in the coming months, and Dame Uta hopes it may settle the current polarisation of views – though “I’m not sure that there could be any easy recipe for that”. In the interim, steering young people away from becoming bogged down by global events and economic woes, and making them feel “more hopeful, less distressed, happier – that would be definitely a move in the right direction”.