Families ‘left in lurch’ on child autism diagnoses, report warns

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

Dame Rachel de Souza’s report into the issue said the system has failed to keep up with rising demand, leaving families “in the lurch” and expected to cope by themselves while they wait.

Parents are having to “jump through multiple hoops” to get support, while their children can end up in crisis and robbed of their potential, she said.

The report calls for urgent change to a needs-led, not a diagnosis-led, system of support – something the government insists it is tackling head-on.

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

“At such a crucial time developmentally, every day a child waits for support could permanently alter their life course,” she warned.

She said, tragically, some children’s unmet needs escalate to crisis point, citing the example of a 14-year-old autistic girl who ended up being admitted to hospital multiple times and required police involvement after health, social care and education had “failed to put in place the interventions she needed”.

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

Dame Rachel said it was currently “impossible” to use published national data to get an overview of how long children were typically waiting, since they can 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Instead, she said she used her legislative powers to access unpublished NHS England data for 2022-2024.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 her report:

• about 3% of children, or 400,000 in all, were still waiting to get a first appointment after being referred
• children with suspected cerebral palsy faced the highest waits – three years and four months, on average.
• nearly a quarter of children with ADHD had waited more than four years to get to get diagnosed following a referral
• almost one in six waited more than four years for an autism diagnosis via the community health service route
• disadvantaged children are disproportionally impacted, with some parents uanble to “fight” for their child to access their legal entitlements

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

Dame Rachel said: “I have spoken to too many families who are exhausted from the fight of trying to do the best for their children.

“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.”

The report calls for earlier identification but also more support in mainstream schools “to prevent over-reliance on diagnosis as the 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 they wait for their child’s assessment.

A government spokesperson said: “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.”