Children waiting years for autism and cerebral palsy diagnoses, data shows

The Children’s Commissioner has issued a warning that the lengthy wait times for diagnoses and support for young people with conditions such as autism and cerebral palsy in England are "robbing" them of their childhoods.

According to data obtained by Dame Rachel de Souza’s office, children with cerebral palsy face the longest wait for diagnosis through community health services, averaging three years and four months. The commissioner highlighted the current impossibility of using existing national data to confirm waiting times for neurodevelopmental condition diagnoses, as these are assessed through both community health services and mental health services.

Utilising her legislative powers, Dame Rachel accessed previously unpublished data from England to present a "joined-up national picture of children’s waiting times" up until March 2024. She noted that waiting lists are extensive via both routes, but initial contact times with community services appear to be longer.

The data revealed that nearly a quarter (23%) of children diagnosed with attention deficit hyperactivity disorder (ADHD) waited over four years post-referral for a diagnosis in community health services. Similarly, almost one in six (15%) waited more than four years for an autism diagnosis through this route, according to the commissioner’s office.

Children referred for Down’s Syndrome faced the longest wait between referral and a first appointment through community health services, averaging around two years and seven months. Children with intellectual disorders, such as those affecting their learning, judgment, reasoning or problem-solving abilities, waited more than 1,000 days, while those with tic disorders, including Tourette’s syndrome, had waits of over 800 days for a diagnosis.

The research revealed that 400,000 children in England were still waiting at the end of March 2023 for a first appointment after being referred to community services or children’s mental health services. This equates to roughly 3% of the nation’s total child population.

A neurodevelopmental condition diagnosis through community services saw an average wait of two years and three months, with four in 10 children (41%, or 14,800) waiting longer than two years for their diagnosis across both services. Of these, nearly a fifth (17% or 6,150 children) waited more than four years.

The commissioner's report found differences based on gender, wealth, and race. Boys made up seven in 10 (70%) of children diagnosed with a neurodevelopmental condition in community health services.

The gap was larger when focusing on ADHD and autism, with girls accounting for 25% and 29% of these diagnoses, respectively. The report highlighted a stark disparity in community health services, where Asian and black children accounted for only 1% and 4% of ADHD diagnoses, despite representing 12% and 6% of the child population, respectively.

The commissioner's research, which included conversations with children and parents, revealed that those who could afford private assessments received help "much quicker". She is advocating for earlier detection of potential neurodevelopmental conditions and increased support within mainstream schools to reduce the heavy reliance on diagnosis as the sole solution.

Additionally, she calls for a national framework for special educational needs (SEN) support in nurseries and schools, more available appointments, and enhanced support for families during their child’s assessment period. Dame Rachel said: "These findings are a stark reminder of the daily fight children and their families face seeking support for neurodevelopmental conditions like autism and ADHD, and how the system has failed to keep pace with rising demand."

"These children face an invisible crisis, in a system that is working against itself by forcing families to jump through multiple hoops in a complex and lengthy process of assessment, diagnosis and intervention. Existing commitments from the Government to fix the broken healthcare and Send (special educational needs) systems are warmly welcomed – but now we need urgent action."

“I’m calling for better support in mainstream schools, improved awareness and training for frontline professionals in education, health and care so that children are supported based on their needs, not a label. We need a system that moves away from a reliance on diagnosis – because failing to provide timely support is robbing children of their childhood and their potential.”

An NHS spokesperson stated: "The NHS is fully committed to supporting and improving the lives of those with autism and ADHD, and has published new national guidance to help local areas manage the 50% increase in referrals seen over the last year."

"We know patients are still waiting too long for an ADHD diagnosis and that’s why the NHS has launched an independent expert taskforce to investigate the challenges facing services, help them manage the rising numbers of referrals, and continue to transform care to ensure everyone gets the support they need."

A Government spokesperson said: "For too long children and young people with autism, ADHD and other neurological conditions have been let down by a broken NHS. Through our 10-Year Health Plan, this government will tackle this head-on – reducing unacceptable waiting times and improving support before and after a diagnosis."

"We are also committed to improving inclusivity and expertise within mainstream schools, and making sure special schools cater to those with the most complex needs to ensure the best chance life chances for every child."