Hundreds of thousands of children in England with suspected neurodevelopmental conditions, including autism and ADHD, face unacceptably long waits for diagnosis. Children’s Commissioner has warned.

Dame Rachel de Souza’s report on the issue said the system is failing to meet rising demand, leaving families “in a tizzy” and expected to deal with it themselves while they wait. Will take.

Parents are “having to go through a lot of barriers” to get support, while their children may be in crisis and have their abilities taken away, she said.

The report calls for an urgent change to a needs-based, not diagnosis-based, support system – something the government insists it is tackling urgently.

Dame Rachel said she was surprised by how many providers had published apology messages and videos about the long waits.

“At such a developmentally critical time, every day a child waits for support that could permanently change the course of his or her life,” he warned.

Sadly, some children’s unmet needs rise to the point of crisis, he said, citing the example of a 14-year-old autistic girl who was hospitalized several times and arrested by the police after failing to access health, social care and education. Participation was required. Implement the interventions he needed”.

“Children and their families should never have to ‘beg’ or ‘fight’ for help,” she said. “Yet, sadly, these are the words I often hear when asking about a child seeking help for neurodivergence.”

Dame Rachel said it was currently “impossible” to find out using published national data how long children were typically waiting, as they could be assessed through both community and mental health services.

Instead, she said she used her legislative powers to access unpublished NHS England data for 2022-2024.

According to his report:

• About 3% of children, or a total of 400,000, were still waiting for a first appointment after being referred
• Children with suspected cerebral palsy faced the longest waits – an average of three years and four months.
• Nearly a quarter of children with ADHD waited more than four years to get a diagnosis after referral
• Almost one in six waited more than four years for an autism diagnosis through the community healthcare route
• Disadvantaged children are disproportionately affected, with some parents forced to “fight” for their child to access their legal rights

Interviews with families revealed that those who could afford chose to pay privately for assessment and support.

Dame Rachel said: “I have spoken to so many families who are tired of the battle of trying to do the best for their children.

“These children are facing an invisible crisis, in a system that is working against itself by forcing families to go through multiple hurdles in a complex and lengthy process of assessment, diagnosis and intervention.”

The report also calls for earlier identification as well as more support in mainstream schools “to prevent over-reliance on diagnosis as a silver bullet”.

It also recommends a national framework for special educational needs support in nurseries and schools, more appointments and better support for families while waiting for their child to be assessed.

A government spokesperson said: “Through our 10-year health plan, this Government will tackle this problem – reducing unacceptable waiting times and improving support before and after diagnosis.

“We are also committed to improving inclusivity and specialization within mainstream schools, and ensuring that special schools cater for those with the most complex needs to ensure the best chance in life for every child.”