‘Over-diagnosed’?: Not what the doctor ordered
Janine Booth assesses the recent report on whether ADHD, autism and mental health conditions are ‘over-diagnosed’. This has also been published on the Workers’ Liberty website and on Janine’s personal website.
Over-diagnosed?
The review that former Health Secretary Wes Streeting commissioned into rising diagnoses of ADHD, autism and mental health conditions in young people has published its report.
Streeting commissioned the review last December, shortly after the ADHD Taskforce – also commissioned by the government – reported that ADHD is not over-diagnosed but under-diagnosed. (We argued that ADHD is not over-diagnosed but is over-pathologised).
Streeting did not like the ADHD Taskforce’s conclusion, so he decided to commission another body to answer the same question, in the hope that he would get the “correct” answer this time. He tasked Peter Fonagy with chairing the investigation.
The report does not give the answer that Streeting wanted – although this may not concern him now that he is no longer the Health Secretary. Rather, it concluded that there is a “risk” of over-diagnosis, and also a reality of misdiagnosis and underdiagnosis.
Over-diagnosed? Decentring diagnosis
Importantly, the report concludes firmly that the rise in diagnosis is not because people only mildly affected or with minor needs are coming forward for assessment. Rather, it contends, “None of this should be taken to suggest that people’s distress or difficulties are not real. If anything, the evidence points the other way: the rising numbers coming forward for assessment have not been accompanied by any fall in severity or impairment – those now presenting are no less affected than those identified before. People are seeking answers and support for very real problems, and they are not the problem. The problem is a system that leans too heavily on diagnosis as the route to help and cannot keep pace.”
It rightly points out that “The heated debate about whether there is too much diagnosis or too little risks reinforcing the centrality of diagnosis rather than need and timely access to support and treatment.” Its key theme is to advocate for ‘a fundamental shift from a ‘diagnosis-dependent’ system to a ‘needs-led plus diagnosis’ system”. This is a step in the right direction. I would argue that a greater shift would be even better – to a system that is inclusive and meets everyone’s needs, so that individual diagnosis becomes less important.
A key reason for the rise in diagnosis is that people need, or at least perceive that they need, the diagnosis in order to get the understanding and support that will help them. People often ask, “Why do so many more children have special needs these days?” A more helpful question would be “Why are so many more children’s needs considered special these days?”, the answer to which is “Because standard provision is so woeful that it is meeting the needs of fewer and fewer kids”.
Over-diagnosed? “Written off”?
In commissioning the report, Streeting said that he was concerned about young people being “over-diagnosed” and “written off”. He appears to be assuming that being “written off” is an inevitable result of being diagnosed, and therefore concludes that the government’s role is to reduce diagnoses. He seems not to have considered the alternative conclusion – that it is wrong to write off young people diagnosed with a neurodevelopmental or mental health condition.
A better approach would be to see diagnosis as a signpost to the support and opportunities that might work for neurodivergent young people. An even better approach would be to make society more neuro-inclusive, so that work, leisure activities, public services and other opportunities make themselves accessible to everyone without having to know each individual’s neurotype.
Over-diagnosed? Too much too young
The report considered people of all ages but focused on young people. One (possibly unintended) consequence of this is a significant distortion of the statistics regarding neurodevelopmental conditions, which show a dramatic rise in diagnosis of young people.
Part of the reason for this dramatic rise is that people are being diagnosed at a younger age because society is becoming more knowledgeable about these issues. The statistics for diagnosis of neurodevelopmental conditions in older people shows a much slower rise than among younger people, and we could reasonably expect that in the future, the rate will go down, as fewer people reach the older age bands without already having been diagnosed.
That is a good thing. I was diagnosed (or, as I prefer to think, identified) as autistic at age 45, dyslexic at age 54 and ADHD at age 59. I try hard not to wonder what my life would have been like if I had known at a younger age, but I know that my children’s knowledge of their neurotype at an earlier age has helped them.
Another reason for the dramatic rise is that the diagnostic system is finally recognising ADHD and autism in girls and women as well as in boys and men.
However, the rise in mental ill-health diagnoses in young people reflects an increase in mental distress. The proportion of 16- to 24-year-olds meeting the criteria for common mental health conditions has increased from around 1 in 6 in 1993 to 1 in 4 in 2024. Young women now report the highest rates of any group. Eating disorders and self-harm have also increased young adults.
As the report states, “The rise in mental health problems is real, is affecting everyday functioning and cannot be explained by greater awareness alone.”
Over-diagnosed? Neurodevelopmental vs mental
It is significant that the report considers ADHD, autism and mental ill-health together. They are not the same thing.
Neurodevelopmental conditions such as autism and ADHD are not mental health conditions. (When this review was commissioned ten months ago, I complained to the BBC that Radio 4’s Today programme referred to it as a review of “mental health conditions, including autism and ADHD”. The BBC upheld my complaint.)
The distinction is significant. We want people to have good mental health, and to identify and remove or reduce sources of distress. We do not want to (and cannot) stop people being autistic or ADHD – we want society to accept that the human species is neurodiverse and to remove barriers to neurominorities.
Over-diagnosed? What is making us sick?
The rise of diagnosis of mental ill-health in young people is partly a result of destigmatisation, of people being more willing to admit to their struggles. But it also results from the increasing and alarming levels of pressure put on young people. Much mental distress among young people is caused by the current regime in schools, especially testing and exams.
The report gives four broad reasons for the rise in mental distress: insecurity (caused by poverty, poor housing, the cost of living, etc); more evaluation and comparison (the stress of increasing assessment and competition, from formal exams to social media likes); loneliness and loss of belonging (linked to a reduction in youth and community services); and reduced rest and recovery (less time and opportunity to relax, play sports, etc).
Over-diagnosed? Private provision
Private companies now carry out over half of all NHS-funded ADHD assessments and over a third of autism assessments. “Yet”, the report points out, “this large and fast-growing use of public money is running without consistent oversight, transparency or quality assurance – commissioners often cannot see what they are paying for. This is not acceptable.”
Among its ten recommendations, the report proposes greater regulation of private diagnostic services and a ban on direct-to-public advertising of NHS-funded ADHD and autism assessments. That is welcome. More welcome still would be bringing private sector diagnostic capacity into, and under the control of, the NHS – and reducing the sources of distress that drive people to seek diagnosis.
As with its other recommendations, and as with the ADHD Taskforce report less than a year ago, this report offers small steps forward and rejects reactionary narratives about over-diagnosis, but misses the opportunity to advocate for more fundamental change.
Image by Abhilash Jacob from Pixabay
