ADHD and autism at risk of over-diagnosis, says government review

There is a risk of people being over-diagnosed with ADHD and autism, an official review in England has found.

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.

The review called for tougher regulation of private firms offering assessments for the NHS, saying they had concerns about quality and consistency, and a ban on advertising.

It concluded economic uncertainty combined with social media was driving an increase in mental health problems among young people and said there needed to be better support in place for all conditions.

The review - led by leading doctors in the field - was ordered 10 months ago by Wes Streeting after the then-health secretary claimed in an interview that young people were over-diagnosed and "written off".

It looked at people of all ages, but particularly focused on young people and children who have the highest rates of diagnoses.

It is likely to feed into government policies on everything from NHS services and benefits to support for young people who are not in education, employment or training.

The experts said too often diagnoses of mental health problems and ADHD and autism were ending up as labels that defined people by their "difficulties rather than their strengths and potential", harming their prospects at school, in work and in relationships.

Children diagnosed with autism and ADHD before the age of 17 are around four times more likely to end up not in education, employment or training between 16 and 24.

With better support after diagnosis, they could be helped to live more fulfilling lives, the review said.

Alongside access to therapies, this should also include support for mental health – significant numbers also struggle with conditions such as depression.

But the review found people were also being harmed by long waits for diagnosis for mental health and ADHD and autism.

The Watsons are just one family who have experience of this. Ryan and his wife knew there was something different with their son Atlas when he was around 12 to 18 months old and missing development milestones.

But it took three years to get an autism assessment. As time passed, his needs became increasingly clear. Now nearly seven, Atlas is non-verbal, still wears nappies and relies on others for all aspects of daily care.

Despite this, 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."

The wait left the family racing against time to secure support before Atlas started school. Ryan and his wife feared he would be placed in a mainstream school.

"We were terrified," Ryan says. "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."

The strain was immense. "It was like I had two jobs," Ryan says. "I was going to work and then coming home and dealing with these things."

Atlas was eventually diagnosed only months before starting school.

To ensure families like the Watsons get quicker assessment, the review calls for reassessment of those on waiting lists to ensure people with the highest needs are prioritised first and to look at whether some could be removed and offered other kinds of non-medical support.

This could include adjustments being made at school or in workplaces and lifestyle support, such as help to improve sleep or address anxiety, it said.

Too often, access to help requires a diagnosis, with experts highlighting changes in 2014 that required parents to get a diagnosis of autism and ADHD to qualify their children for extra support in schools.

Review chair Prof Peter Fonagy said it was clear the system was "under immense strain" and it was time to get away from diagnosis being a "very narrow pathway" to finding 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."

The review said not every difficulty required a medical response and there was 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.

it said there was a risk society was now moving from an era of under-diagnosis to over-diagnosis or mis-diagnosis, pointing to data showing more than 4% of children aged six to 17 were now diagnosed with autism, well above the 1-2% that studies suggest is the true level.

But it said because some of these figures date back nearly a decade it was not possible to be absolutely certain or conclude over-diagnosis was currently occurring at scale.

Mel Merritt, of the National Autistic Society, said the report shows that successive governments "have failed autistic people".

"The harm and distress autistic people are facing is real and widespread and there is a desperate need to build a system that supports the needs of autistic people."

Abigail Ampofo, of 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."

But she said that would require major reform.

The government welcomed the publication of the report and said it would be setting out a new model of providing support in its forthcoming mental health strategy, which is expected before the end of the year, and also promised to introduce tougher regulation of ADHD and autism assessments.

Health Secretary Yvette Cooper added: "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."