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Overdiagnosis of Autism

by Dr Carl Heneghan and Dr Tom Jefferson
27 April 2024 11:00 AM

Last week, we introduced the concept of overdiagnosis in prostate cancer screening. It didn’t take long for the issue to rear its head again as the Telegraph reported ‘Why autism and ADHD self-diagnosis may be inaccurate‘, and ‘ADHD and autism referrals are up fivefold since the pandemic‘.

These reports are based on a recent Nuffield Trust report, which “shows that there might be as many as 1.2 million autistic people and 2.2 million people with ADHD in England”. Furthermore, in December 2023, there were 172,022 patients with suspected autism waiting to be seen – the highest number ever reported and five times higher than the 32,220 waiting in 2019.

According to the Telegraph, experts blame “diagnostic creep”. An NHS task force is investigating the problem. “NHS England has also begun important work into investigating challenges in ADHD service provision and last month launched a cross sector task force alongside Government, to help provide a joined-up approach for the growing numbers of people coming forward for support.”

At the TTE office, we decided to try out the AQ test, developed by Cambridge researchers in 2001 and popularised by Wired magazine. Here’s a link to the test. 

Here at TTE, we hit near the threshold because we scored highly on questions such as “Are you fascinated by numbers?” People also often tell us that we’d keep going on and on about the same thing – take excess deaths as one example. And we frequently find it difficult to work out people’s intentions – we have no idea what the WHO is up to in its latest treaty.  The difference between answering definitely or slightly agreeing is enough to tip you over the edge.

Diagnostic creep is a phenomenon where the diagnostic threshold is expanded to include ambiguous or very mild symptoms. Overselling promotes adult autism by moving the line that separates normal from abnormal – people with milder and milder symptoms get diagnosed. While the symptoms may be intense or debilitating for a minority, they are mild or fleeting for most.

People on the waiting list report they want a formal diagnosis of ADHD or autism; they just want to know. However, reports say they are not looking for medical treatment, be it prescriptions or talking therapies; they’re looking for “validation and recognition”. 

But the consequence of diagnostic creep is disease-mongering. Widening the diagnostic boundaries allows aggressive public promotion to expand the markets for treatment. As an example, ADHD prescribing has risen by 50% over the last five years. 

With 3.4 million potential patients, that’s a lot of drugs to sell to people who may never benefit and often will be harmed. And if you think healthcare can meet such demand, then think again.

Dr. Carl Heneghan is the Oxford Professor of Evidence Based Medicine and Dr. Tom Jefferson is an epidemiologist based in Rome who works with Professor Heneghan on the Cochrane Collaboration. This article was first published on their Substack, Trust The Evidence, which you can subscribe to here.

Tags: AutismNHSNHS BacklogOver-diagnosisOver-medicalisation

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