London: An official review in England has warned of a potential risk of overdiagnosing attention deficit hyperactivity disorder (ADHD) and autism, calling for stricter regulation of private assessment providers and improved support for people with neurodevelopmental and mental health conditions.
The review, led by Professor Peter Fonagy and commissioned by former Health Secretary Wes Streeting, found that diagnoses of ADHD and autism had increased significantly over the past 25 years. Experts stated that diagnosis rates among some younger age groups appeared to exceed expected levels, raising concerns about possible overdiagnosis and misdiagnosis.
However, the report cautioned that available data was not sufficient to establish whether overdiagnosis was occurring on a large scale at present. It noted that some figures were nearly a decade old, highlighting the need for more reliable and up-to-date evidence.
The review also called for tougher oversight of private companies providing ADHD and autism assessments for the National Health Service (NHS). Recommendations included stronger quality standards, greater consistency in assessments and a ban on advertising these services.
Review highlights impact on children and young people
The report highlighted concerns that mental health and neurodevelopmental diagnoses were sometimes becoming labels that define individuals by their difficulties rather than their strengths and potential. Experts warned that this could affect educational opportunities, employment prospects and personal relationships.
According to the review, children diagnosed with autism or ADHD before the age of 17 are around four times more likely to become not in education, employment or training (NEET) between the ages of 16 and 24.
The experts highlighted that better support following diagnosis could help young people lead more fulfilling lives. This should include access to appropriate therapies, mental health services and assistance for co-existing conditions such as depression and anxiety.
The review also linked rising mental health challenges among young people to economic uncertainty and the influence of social media, calling for stronger support systems across a range of conditions.
Long waiting times leave families struggling
The report highlighted the difficulties faced by families waiting for assessments and support. The delay placed additional pressure on the family as they tried to secure appropriate support before Atlas started school. They were concerned that he might be placed in a mainstream school that could not adequately meet his needs.
The review recommended reassessing people on waiting lists to ensure those with the highest levels of need receive priority. It also suggested identifying individuals who could benefit from non-medical support while awaiting an assessment.
Such measures could include adjustments in schools and workplaces, alongside lifestyle support to address issues such as sleep difficulties and anxiety.
Diagnosis should not be the only route to support
The review found that access to assistance often depended on receiving a formal diagnosis, creating additional barriers for families facing lengthy waiting periods. Professor Fonagy stated that the current system was under considerable pressure and called for a shift away from diagnosis as the main route to accessing support.
He stressed that diagnoses remained essential but should not be the only way for individuals to receive help. The report recommended making appropriate support available based on people’s needs, including before a formal assessment is completed.
The experts also warned against treating every difficulty as a medical condition, highlighting the importance of distinguishing diagnosable conditions from the natural variation in human behaviour, cognition and brain function.
The report cited data indicating that more than 4 percent of children aged six to 17 had been diagnosed with autism, compared with an estimated prevalence of 1 percent to 2 percent suggested by some studies. However, it acknowledged the limitations of the available figures and noted they did not conclusively establish widespread overdiagnosis.
Charities call for better support for autistic people
The findings prompted calls from advocacy groups for improvements in services for autistic people and those experiencing mental health difficulties.
Mel Merritt of the National Autistic Society stated that the report highlighted longstanding failures by successive governments to adequately support autistic people. She stressed that the distress experienced by autistic individuals was widespread and required a more effective support system.
Abigail Ampofo of the charity YoungMinds noted that young people had often felt blamed for their mental health difficulties or accused of exaggerating their experiences.
The UK government welcomed the review and emphasised that it would outline a new model for providing support in its forthcoming mental health strategy, expected before the end of the year. It also pledged to introduce stricter regulation of ADHD and autism assessments.
Health Secretary Yvette Cooper remarked that the review had highlighted the importance of early intervention for mental health and neurodevelopmental conditions, as well as the significant distress they can cause.
The findings are expected to inform future government policies covering NHS services, benefits and support for young people who are not in education, employment or training.
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