The New Statesman op-ed: We all pay the price for headlines that distort Fonagy’s findings
Misleading coverage risks making vital services and support even harder to access.
This article was originally published by the New Stateman. Article by Mel Merritt, Head of Policy and Influencing at the National Autistic Society.
Professor Peter Fonagy’s independent report on the prevalence of mental health issues, ADHD and autism is unequivocal in its findings: successive governments have failed autistic people and currently there is no widespread overdiagnosis of autism.
The report found that being able to get a diagnosis brings substantially more benefit than harm. It finds no evidence that people coming forward today are less affected than those identified before. Yet much of the media coverage sidelines government failings and gives a misleading picture.
There is a lack of reliable, up-to-date figures showing how many people are autistic. There is no evidence that too many people are being diagnosed. Yet this has received overwhelming attention at the expense of the realities autistic people face: mental health distress; increased risk of suicide; less likely to be in education or employment; and a lack of specialist support for autistic people with a learning disability.
Diagnosis can reduce distress and help people access support. There needs to be urgent action for the more than 294,000 people who are currently waiting for an autism assessment in England, with average waiting times as high as three years in some areas of the country.
Often, little support arrives while waiting for a diagnosis or after. Education and social care support is often dependent on getting a diagnosis. It shouldn’t be this way, but this is how councils are gatekeeping support to manage stretched budgets.
As the report found, waiting increases harm and means people are more likely to reach crisis and need more expensive help. Yet some NHS areas have introduced minimum waits of two years for an assessment. Misleading coverage risks being used to justify policies that make diagnosis and support harder to access, deepening the harm people already face. Autistic people must not pay the price for headlines that distort the report’s findings.
But a diagnosis too often still does not lead to support. Autistic people often have to fend for themselves. The Fonagy report highlights that 40 per cent of clinicians surveyed reported no ongoing post-diagnostic support: autistic people and their families describe years of waiting to get support.
Meanwhile, we have been warning – along with other autism charities – against an increasingly polarised debate. With the publication of the final report, the toxic headlines continue, leading on possible future risks over real current failures and claims that diagnosis causes harm when the review found the exact opposite.
Government and ministers should use their positions to steer the conversation away from endless harmful discussions about overdiagnosis. Instead, they should work with autistic people and their families to take action to create a system that works for all, focused on positive outcomes – not blame – and managing demand.
Now is the time to stop the spread of harmful misinformation about autism and shift the conversation towards solutions that genuinely address autistic people’s needs. Denying people support will only worsen inequalities, particularly for previously under-recognised groups such as autistic women and girls, who are only now getting long-overdue recognition and support.
The government has accepted the recommendations of Fonagy’s report; it now needs to match with action by building and investing in a new system.
Read our article in the New Statesman.