Minimum two-year waits for attention deficit hyperactivity disorder (ADHD) and autism assessments show an NHS struggling to cope with rapidly changing awareness, understanding and social attitudes towards these conditions.
Sharp increases in referral rates over the past six years have left nearly one million people in England waiting for ADHD assessments, with an average delay of more than a year at 64 weeks. Around 295,000 people are waiting for an autism assessment.
Formal diagnoses have grown gradually since the early 2000s and have accelerated since 2020. Between 2020 and 2022, the annual incidence of autism diagnoses among males aged three to 25 rose from 185 to 580 per 100,000 people. Among females in the same age group, it increased from 45 to 320 per 100,000.
The growing queues reflect not only financial pressure and shortages of key staff within the NHS, but also increasing distress among patients and families for whom a diagnosis can be essential to obtaining clinical treatment and other support.
Because the NHS acts as a crucial route to wider social services, lengthy assessment delays can have consequences beyond healthcare. They can also postpone access to specialist school support and financial assistance through disability benefits.
The surge has caught public services ill-prepared, prompting concern at the Treasury and fuelling a fierce cultural debate. Critics have dismissed the rise as faddish or politically driven overdiagnosis, while supporters describe it as long-overdue recognition of genuine conditions that create substantial difficulties in everyday life.
An interim report published earlier this year by Peter Fonagy, commissioned by the government to examine these trends, avoided taking a definitive position. “Unmet needs, misdiagnosis and concerns about over-medicalisation can coexist in the same system,” he wrote amid the wider culture-war debate.
What was clear, Fonagy concluded, was that more people—particularly younger people—were experiencing distress and seeking help. Lower referral thresholds brought more patients into NHS services that were poorly equipped to handle the increase in demand.
Part of the rise reflected improved clinical knowledge and greater recognition of unmet needs, especially among groups historically missed by existing systems, such as girls and young women. “Some groups that were historically under-identified are now entering the services in greater numbers,” the report said.
Demand has also been shaped by institutions such as schools and the benefits system. Fonagy described diagnosis as the “practical mechanism through which individuals obtain access to support, adjustments or formal recognition”—or, as some critics disparagingly call it, a “golden ticket”.
Other factors behind the increase in assessment referrals include the pandemic, economic insecurity, greater public awareness and reduced stigma surrounding ADHD and autism.
Fonagy is expected to publish his final report in the coming weeks. It will consider how the NHS can manage the surge in autism and ADHD referrals, while also recommending ways to address the underlying pressures affecting the system.
