That NHS boards have imposed minimum two-year waiting times for attention deficit hyperactivity disorder and autism assessments shows a health service struggling to deal with the consequences of huge changes in understanding of and social attitudes to these conditions.
Sharp rises in referrals for clinical assessments over the past six years mean nearly 1 million people in England are on ADHD waiting lists, with the average wait already over a year (64 weeks). About 295,000 await an autism assessment.
Formal diagnosis has grown in recent years, slowly from the early 2000s and rapidly since 2020. Between 2020 and 2022, annual incidence of autism diagnosis in three- to 25-year-old males rose from 185 to 580 per 100,000, and from 45 to 320 in females.
The lengthening waiting lists tell a tale not only of an NHS under financial strain and short of key staff, but also one of deepening distress for many patients and families for whom diagnosis is the key to clinical treatment and other forms of support.
The explosion in diagnosis reflects the role of the NHS as a crucial gateway for a range of social support. If assessment bottlenecks mean it cannot deliver timely clinical assessments, this has serious knock-on effects; delays not just in medical help but in access to specialist support in schools or financial support through disability benefits.
This trend has caught public services by surprise, causing alarm at the Treasury and triggering a bitter culture war that on one side derides this trend as the product of faddish and woke overdiagnosis, and on the other is hailed as the belated recognition of genuine conditions with real-life challenges for individuals.
The interim report of a government-commissioned review into these trends by Peter Fonagy, published earlier this year, did not take sides. “Unmet needs, misdiagnosis and concerns about over-medicalisation can coexist in the same system,” he wrote, with a nod to the raging culture war debates.
What was not in doubt was that more people were experiencing distress, especially younger people, he concluded, and more people were seeking help as a result. Thresholds for referral had lowered, driving more referrals into an NHS poorly equipped to deal with the rise in demand.
That increase in part reflected improved clinical understanding and greater recognition of unmet needs, especially in previously underdiagnosed groups such as girls and young women. “Some groups that were historically under-identified are now entering the services in greater numbers,” the report said.
Diagnosis was also driven by institutional demand, whether in schools or the benefit system. It operates as what Fonagy describes as the “practical mechanism through which individuals obtain access to support, adjustments or formal recognition” – or what culture warriors disdain as the “golden ticket”.
The bigger picture driving increases in referrals for diagnosis includes a variety of other factors: the impact of the pandemic, economic insecurity, greater public awareness and a decline in stigma surrounding ADHD and autism.
Fonagy is expected to deliver his final report in the next few weeks. He has shown why the NHS is under huge strain coping with the rise in referrals for autism and ADHD. His next task is harder: to recommend ways of fixing the system.
