An official review in England has found there is a risk that people are being over-diagnosed with ADHD and autism, warning that diagnosis rates in some younger age groups appear to be higher than would be expected across the population.
The review, led by senior doctors in the field and chaired by Prof Peter Fonagy, was commissioned 10 months ago by Wes Streeting, the health secretary at the time, after he said in an interview that young people were over-diagnosed and “written off”.
It called for stronger regulation of private companies that carry out assessments for the NHS, citing concerns about quality and consistency, and for a ban on advertising for such assessments.
The experts concluded that economic uncertainty, together with social media, was fuelling a rise in mental health problems among young people, and said better support needed to be available for all conditions.
While the review examined people of all ages, it concentrated on young people and children, who have the highest rates of diagnosis. Its findings are expected to inform government policy on areas ranging from NHS services and benefits to support for young people who are not in education, employment or training (NEET).
According to the review, diagnoses of mental health conditions, ADHD and autism too often become labels that define people by their difficulties rather than their strengths and potential, damaging their prospects at school, at work and in relationships.
It noted that children diagnosed with autism and ADHD before the age of 17 are roughly four times more likely to be NEET between the ages of 16 and 24.
With better support after a diagnosis, the review said, they could be helped to lead more fulfilling lives. Alongside access to therapies, that support should include help for mental health, it added, noting that significant numbers also struggle with conditions such as depression.
However, the review also found that people were being harmed by long waits for a diagnosis of mental health conditions, ADHD and autism.
Ryan Watson and his wife noticed their son Atlas was developing differently when he was between 12 and 18 months old and was missing developmental milestones, but it took three years to obtain an autism assessment. As time went on, his needs became clearer. Atlas, now nearly seven, is non-verbal, still wears nappies and depends on others for every aspect of daily care.
Ryan said there was no fast-track route for children with the most complex needs. “You basically go on the list and wait however long until you get to the top,” he said.
The family raced against time to secure support before Atlas started school, fearing he would be placed in a mainstream school. “We were terrified,” Ryan said. “Anyone who has a child like Atlas will have the same panic that they’ll start in a mainstream school where it’s not safe.”
He described the strain as enormous. “It was like I had two jobs,” he said. “I was going to work and then coming home and dealing with these things.” Atlas was eventually diagnosed only months before he began school.
To help families such as the Watsons obtain quicker assessments, the review recommends reassessing those on waiting lists so that people with the greatest needs are prioritised, and examining whether some could be taken off the lists and offered other, non-medical support instead.
That support could include adjustments at school or in the workplace and lifestyle help, such as assistance to improve sleep or address anxiety, the review said.
Too often, access to help depends on having a diagnosis, with experts pointing to changes introduced in 2014 that required parents to obtain a diagnosis of autism and ADHD for their children to qualify for extra support in schools.
Prof Fonagy, who chaired the review, said the system was clearly “under immense strain” and that it was time to move away from diagnosis being a “very narrow pathway” to support. “Diagnosis remains essential and must be protected – what has to change is that it is no longer the only door through which help can be reached,” he said.
The review stated that not every difficulty requires a medical response, and warned of a risk that the boundaries become blurred between diagnosable ADHD and autism and what should be regarded as normal human variation in brain function, cognition and behaviour.
It said society risked moving from an era of under-diagnosis to one of over-diagnosis or mis-diagnosis, citing data showing that more than 4% of children aged six to 17 are now diagnosed with autism, well above the 1-2% that studies indicate is the true level.
It added, however, that because some of those figures date back nearly a decade, it is not possible to be absolutely certain or to conclude that over-diagnosis is currently happening at scale.
Mel Merritt of the National Autistic Society said the report showed successive governments “have failed autistic people”. She said the harm and distress autistic people face is real and widespread, and that there is a desperate need to build a system that supports their needs.
Abigail Ampofo of the charity YoungMinds said: “For years, young people have told us they feel blamed for their mental health or accused of making it up. We hope this review goes some way to show them their distress is not their fault and the systems around them are failing.”
The government welcomed publication of the report. It said it would set out a new model for providing support in its forthcoming mental health strategy, expected before the end of the year, and promised to introduce tougher regulation of ADHD and autism assessments.
Health Secretary Yvette Cooper said: “Professor Fonagy’s review has shown the importance of early intervention to address mental health and neurodevelopmental conditions and the huge distress these can cause.”
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