With more demand and less resources, long waiting times are inevitably leaving neurodivergent children behind, writes Fiona McDonald.
A rising demand for Autism and ADHD assessments, combined with a lack of recruitment of new staff, means some neurodivergent children in England are having to wait years for a diagnosis, according to an academic in the field. This comes after the report released in October 2024 by the Children’s Commissioner for England, Dame Rachel de Souza, which highlights that neurodivergent children can be waiting years for a diagnosis, which can have a knock-on effect on them getting the support they need. In community health services, the average wait for a diagnosis was 2 years and 3 months. Almost half of children (41%) were waiting more than 2 years for their diagnosis, and 17% were waiting more than 4 years.
Insufficient resources
Dr Hannah Belcher, Lecturer at King’s College London, highlighted a higher demand for assessments for Autism, and less resources available in the NHS, including staff levels. She puts this down to a greater awareness of autism. Over the last decade we’ve highlighted in the research the large number of autistic people not being diagnosed until adulthood and the risks of this. So now those children who would have previously had to wait until adulthood before their autism was recognised, are being recognised in childhood. For example, girls who mask their autistic traits.
Dr Belcher pinpointed that the Government did not reduced waiting times for autistic people in line with their 2021/2022 National Autism Strategy. She said Unless the government updates its strategy and actually puts more resources into autism assessment centres, this problem is only going to get worse. People are turning to private assessments, which now also have growing waiting lists and often aren’t recognised by NHS services. Plus the costs of a private assessment makes it inaccessible for most.
Devastating impact on children and families
The long waiting times are also significant for the families of neurodivergent children and young people. Amanda Elliot from the UK disability charity Contact, the charity for families with disabled children, highlighted that the waits for assessments are now longer than pre-Covid, referring to the “devastating impact” on children, young people, and their families. She said At the same time parent carers find themselves forced to reduce working hours or give up work altogether to care for their children with deteriorating mental health, while having to navigate a complicated system of support – made even more traumatic when families find themselves turned away or left waiting for months or even years.
Robbing children of their childhood
In the report, the Commissioner pinpoints that disadvantaged children are the most impacted. She said This is an Equalities issue. While all children with unsupported neurodivergence are suffering, it is the most disadvantaged children who are disproportionately impacted. In failing to provide timely support, we are not only wasting public money, we are robbing children of their childhood and their potential. If there is no improvement, said Dr Hannah Belcher, the consequences will be bleak for neurodivergent children and young people. With such children already at greater risk of mental health problems, more will require mental health services. She said this puts a further strain on the NHS to meet these needs with very few resources to do this. Suicide rates in autistic people are very high, so I think the consequences will be quite devastating.
Tackling the waiting lists
Responding to the report, an NHS spokesperson said 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.
The Children’s Commissioners’s report:
https://shorturl.at/aofhU
Lord Darzi’s Independent Investigation:
https://shorturl.at/g8drh