Autism, ADHD and mental health review: What you need to know
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The review looks at NHS waiting times and whether young people are being over-diagnosed.
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It has been called a "generational opportunity" to rethink support for both mental health conditions and ADHD and autism.
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The review, commissioned by then-health secretary Wes Streeting 10 months ago after saying young people were being "over-diagnosed" and "written off", could have major implications for NHS services, the benefits system, schools and employment support.
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Its 600-plus pages, external contain a host of conclusions and recommendations. Here are the key takeaways.
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The report is clear that there is an increasing risk of over-diagnosis, but only when it comes to ADHD and autism.
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Experts said a rise in diagnoses over the past 25 years meant cases now appear to be outstripping the expected number in the population for some younger age groups.
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They gave the example of children aged six to 17 – more than 4% have been diagnosed with autism. That's well above the 1-2% that studies suggest is the true level.
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But this comes with a big caveat. There are weaknesses in the data. Evidence about the true level of autism relies on surveys that have not been done for nine years, so the review team have had to estimate what has happened since.
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And there are some age groups where these conditions are still being under-diagnosed, and that should not be overlooked.
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It is why the review team said it could not yet conclude over-diagnosis was happening "at scale". But there is certainly evidence to suggest we are moving from an era of under-diagnosis to one of over-diagnosis, the experts said.
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They warn not every difficulty requires a medical response and there is a risk of blurring the lines between diagnosable ADHD and autism and what should be considered the "normal human variation in brain function, cognition and behaviour".
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Where the review team very clearly rejects the idea of over-diagnosis is with mental health. In fact, the chair, Prof Peter Fonagy, has said Streeting was "completely wrong" on that.
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He said the increase in mental distress is real – one in four 16 to 24-year-olds are now thought to experience it, up from one in six 30 years ago. He links this to a variety of factors including economic uncertainty, the impact of social media and loss of youth services.
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This contrasts with autism and ADHD. While diagnoses have increased, the true level in the whole population (regardless of whether they have come forward or not) has remained broadly stable, according to best estimates.
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What is not happening with mental health, though, is an increase in severe mental illness. Population rates of schizophrenia and bipolar disorder, for example, have remained stable.
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Instead, what is driving the rise is conditions such as anxiety, depression, self-harm and eating disorders.
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Where the review experts share, to some extent, Streeting's concerns is on the impact of diagnosis.
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They said there was a risk it ends up closing doors to opportunities.
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It can, they said, act as a label that defines them by their "difficulties" rather than "strengths and potential".
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This then hampers them in education, work and relationships.
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Around a third of 16 to 24-year-olds not in education, employment or training (NEET) report their mental health or autism as a factor.
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Those diagnosed with ADHD before the age of 17 are four times more likely to be a NEET than those without.
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Addressing this, they said, would require better support post-diagnosis. Some of that is down to the NHS, but as important is the approach of schools, workplaces and wider society.
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Another area where the review team is united in its view is that the support system is "falling short" of what people need for both mental health and neurological conditions such as ADHD and autism.
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Waiting times for assessment are too long. A third of young people referred to mental health services wait more than a year, while of the 900,000 people waiting for ADHD or autism checks, 90% have waited more than three months.
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In the lead up to publication of the report, NHS Alliance, which represents health bosses, said the system was in chaos.
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But this goes further than the NHS. The report said support across care, education, employment and welfare remains fragmented, with people having to "jump through hoops" and face repeated assessment and conflicting requirements to get support.
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No time should be wasted in tackling these challenges, the review says.
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On long waits, it says everyone on a waiting list should be reassessed so that those most in need are prioritised for help. There should no longer be a first-come, first-served approach.
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Some of those waiting may benefit from non-medical support, advice about sleeping better or getting more physical exercise, for example. That may even lead to some being removed from the waiting list.
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There should also be better assessments before people are placed on waiting lists too. Not every problem needs a medical solution, the experts make clear.
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Quality and consistency of autism and ADHD assessments must be improved, with the review highlighting concerns about those done by the private sector on behalf of the NHS. Half of ADHD and a third of autism assessments are done by non-NHS providers, such as charities and private firms.
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But they are not subject to the same regulation as NHS providers – and this must change.
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The experts also said it wanted to see a ban on direct-to-public advertising of assessments.
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The review has said it wants to see action over the next 12 to 24 months. The government has promised to act – and is expected to set out more details in its forthcoming mental health strategy which is expected by the end of the year.
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Have you been affected by issues covered in this story? Share your experiences.
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