Neurologist Suzanne O’Sullivan recently told The Times that “overdiagnosis” is a scourge these days, including among those with suspected autism.
But do the stats bear these claims out?
The National Autistic Society says that roughly 750,000 autistic adults in the UK remain undiagnosed; the Children’s Commissioner’s 2024 report on waiting times for assessment and support for autism found wide “inequalities between the most and least advantaged children” seeking assessment.
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With the latest NHS figures on diagnosis waiting times having just been released (sharing that just under 90% of those with suspected autism have had open assesment referrals incomplete for at last 13 weeks), we spoke to The National Autistic Society about why difficulties getting assessed might be more of a risk than so-called “overdiagnosis.”
“An autism diagnosis can be life-changing”
Mel Merritt, Head of Policy and Campaigns at the National Autistic Society, tells us: “The number of people waiting for an autism assessment in England has rocketed to more than 224,000 people – that’s nearly the population of Luton or Portsmouth.”
It is also a 23% increase from last year’s figures, and a 76% rise over the past two years.
“The waiting list has more than tripled since the publication of the National Autism Strategy in July 2021, despite its promise to reduce diagnosis waiting times and improve support,” Merritt continues.
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This is also despite the NHS itself saying people should not have to wait for more than three months to be assessed.
“An autism diagnosis can be life-changing and in some cases lifesaving, but getting an autism assessment shouldn’t be this hard… the average wait is now over 14 months,” the spokesperson shares.
“The assessment can be the first step to really understanding people’s needs and, too often, people can’t get support without a diagnosis, although this shouldn’t be the case.
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“Additionally, people shouldn’t have to pay to get the support they need for themselves or their children.”
The Children’s Commissioner’s 2024 report found that “the most disadvantaged children with neurodevelopmental conditions are most likely to
have their life course permanently altered by long wait times.
As a Guardian writer puts it, “No one is simply ‘slapping’ an autism diagnosis on anybody, at least not in the NHS.”
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Endless wait lists are “traumatic”
Though there is an increased demand for assessments (especially among “previously overlooked demographics such as women and girls”), the National Autistic Society tells us there is not a corresponding supply.
And even once you pass the “traumatic” wait time, “The diagnosis process is not a simple, quick process and can involve hours of recounting traumatic experiences and focusing on perceived deficits.”
Merrit ends, “Autistic people and their families face a constant fight for support in all aspects of their lives, and this often starts with long, traumatic waits for a diagnosis.
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“The Government must provide urgent funding for diagnosis services to end this worsening crisis, and make sure autistic people and their families get the support they need when they need it.”
