Getting an autism or ADHD diagnosis must stop being one of the “only ways to unlock support in school”, the children’s commissioner has said after data showed around 400,000 children are waiting for their first appointment.
Dame Rachel de Souza has today published never-before-seen data from the NHS, revealing the “huge waits” children face for a diagnosis and treatment for neurodevelopmental conditions.
In 2022-23 and 2023-24, 19,600 children were diagnosed as autistic and 7,540 with ADHD by community health services. A further 16,300 were diagnosed with autism and 9,570 with ADHD by mental health services.
de Souza demanded that the government address long waiting times and invest in increasing appointments in community and mental health services.
The report also called for more staff in schools trained to identify needs, and “profiling tools” that are proven to help identify pupils with potential neurodivergence to be rolled out to all settings.
The data, obtained by de Souza using her statutory powers, reveals the extent of the crisis in diagnosis and treatment of neurodevelopmental conditions.
Children wait on average two years and three months for a diagnosis, with 41 per cent waiting over two years and 17 waiting over four.
Twenty-three per cent of children waited over four years between being referred to community health services and being diagnosed with ADHD. Fifteen per cent faced a wait of over four years for an autism diagnosis.
Those waiting for the school nursing service waited on average two-and-a-half years.
In community health services, an estimated 400,000 children, 3 per cent of the total population, “were still waiting at the end of 2022-23 to receive their first contact with community health services associated with neurodevelopmental disorders”.
‘An invisible crisis’
de Souza said the findings were 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.”
The report warned the current SEND system “often incentivises children and families to seek diagnoses to unlock support, even when a diagnosis may not be what a child or their family feels they want or need”.
“Much of the support that children with SEND say they would benefit from most, such as reasonable adjustments in school or therapeutic services, should be provided on a needs-led basis.
“However, the reality is that very often a diagnosis is the only way to create shared understanding of a child’s needs and get support. The result is the unprecedented demand for and pressure on diagnostic services that we see today.”
More trained staff needed
The report said the government’s child health action plan and other long-term strategies “must include a joint health, education and social care workforce strategy for disabled children, children with special educational needs, and neurodivergent children”.
This strategy should ensure “every local area” has enough school nurses, educational psychologists, as well as the necessary trained and qualified SENCo and school staff.
It should also consider what action is needed to “effectively support children and young people so that a diagnosis of a neurodevelopmental disorder is not one of the only ways to unlock support in school, health services, social care, and the community”.
Schools must also be held to account for the extent to which they are inclusive, with Ofsted’s framework reformed to “further focus on schools’ use of alternative provision” and the “extent to which schools admit children with additional needs”.
To “understand whether schools are fostering cultures of inclusivity and promoting wellbeing”, inspectors should speak to children with SEND, as well as their parents, during all inspections.
Roll out proven ‘profiling tools’
The report also said profiling tools that had been proven to effectively identify hildren with a likely neurodevelopmental disorder and additional needs “should be rolled out across all nurseries and schools in the country”.
It pointed to Portsmouth City Council which had developed a tool based on nine sub-profiles that is used to get a “better understanding” of a young person’s needs.
The sub-profiles span speech and language, energy levels, attention skills and impulse control, emotional regulation, motor skills, flexibility and adaptability, sensory needs, empathising and systemising and cognitive ability.
A pilot run with 51 children found wellbeing scores improved for children, parents and professionals, with a 65 per cent reduction in demand for diagnoses.
Such tools should not replace diagnostic assessments, but with earlier identification, “adjustments and support can be put in place more rapidly to help children to enjoy and achieve in their learning environment”.
The report also called for a national framework for SEND support in nurseries and schools, with greater funding linked to the needs of their cohort of children.
That funding “should be a ringfenced – or identifiable – element of their core funding but with greater flexibility over how that funding is used”.
The Department for Education and Department of Health and Social Care should should work together to create a “fairer system of resource allocation in the SEND system”.
This would cover things like access to assessment, therapies and school places “which are currently subject to a postcode lottery”.
