Last week, Peter Fonagy published the final report of his review into rising demand for mental health, autism and ADHD support in England.
The big question concerned overdiagnosis. Are clinicians handing out labels that don’t really apply? Have people – especially young people – begun to pathologise normal emotional ups and downs, minor sensitivities and personality quirks?
Fonagy’s team should be applauded for bringing much-needed level-headedness to this contentious debate. The report provides nuanced answers on diagnosis rates while shifting attention to the more important question of how support systems need to change.
Mental health conditions have risen
The report distinguishes between ‘administrative prevalence’ (how many people are recorded as having a condition) and ‘population prevalence’ (how many people actually have the condition, whether recorded or not). Comparing the two can help identify potential over- or underdiagnosis.
We have relatively robust data on the population prevalence of mental health conditions, for example from representative surveys that measure participants’ symptoms directly. Fonagy’s team draw on these data to confirm that rates of common mental health conditions, primarily anxiety and depression, have genuinely risen over recent years, especially among young people.
Multiple interacting factors have likely contributed to this increase, many of which affect young people disproportionately. These include a lack of affordable housing, the harms associated with social media, and the closure of youth clubs alongside the increasing pull of online life, which can lead to social isolation. Covid-19 has exacerbated these effects. Our Grown up? Journeys to adulthood programme highlights all these issues and more, reinforcing Fonagy’s call for a much more joined-up mental health system offering timely and holistic support without a cliff-edge at age 18.
Autism and ADHD
For autism and ADHD – neurodevelopmental conditions rather than mental health ones – a lack of recent data on population prevalence makes diagnosis rates harder to assess. Fonagy concludes that recorded cases are approaching our best available estimates of population prevalence. While not establishing that overdiagnosis is occurring at scale, this suggests that “if present trends continue we are clearly entering a phase in which the balance of risks is changing, from previous merited concerns with under-recognition and underdiagnosis towards an increased risk of misdiagnosis and overdiagnosis.”
Concerns about the quality and consistency of some ADHD and autism assessments, including those carried out by independent providers, must be addressed to manage this risk.
A diagnosis-dependent support system
Underlying all the talk of over- and underdiagnosis is the question of what’s driving the increase in demand. Here, Fonagy is clear: the system is too dependent on diagnosis as a gateway to support. If support were available on the basis of need, some of the pressure to pursue a diagnosis would diminish. This chimes with Nuffield Foundation-funded research that has called for a needs-led Special Educational Needs and Disabilities (SEND) system. Here, support would be delivered quickly once a need was identified, rather than allowing that need to escalate over months or years while diagnosis was sought. Fonagy identifies similar issues for adults with Access to Work and parts of the welfare system.
A focus on work and school
Fonagy rightly insists that neither mental health problems nor traits associated with autism and ADHD automatically warrant a diagnosis, which instead depends on “the extent to which they cause persistent difficulties in multiple settings and lead to functional impairment, including distress”. This, of course, is partly determined by the environments in which people spend time. Evidence that children are becoming increasingly unhappy with aspects of the school environment, including academic pressure, harsh discipline and sensory over-stimulation, may partly explain why growing numbers of families seek diagnosis.
Tackling barriers to well-being for individuals with mental health and neurodevelopmental conditions in key settings such as schools and workplaces is another approach likely to reduce the need for additional support and consequent demand for diagnosis.
The report places particular emphasis on participation in education, work, relationships and community life. It argues that these are not only important outcomes but can themselves form part of effective support: “the vast majority of individuals with mental health and neurodevelopmental conditions want to work and go to school and are able to, if given appropriate support and reasonable adjustments. It is the job of the NHS and other public services to recognise the importance of engagement in education and work for good health”.
Current Nuffield Foundation-funded work on school inclusion and belonging reflects this focus, as does our new Essential Employment Skills Fund, which aims to build the evidence on effective approaches to supporting young people facing significant barriers to work, including SEND or mental health difficulties.
The value of participation is also likely to feature prominently in the highly anticipated final report of the Milburn Review, expected this autumn.
