New UK report reveals autism assessment and support crisis

A report published today (Friday 2 February) by the Child of the North initiative—led by the N8 Research Partnership and former Children’s Commissioner Anne Longfield’s new Center for Young Lives think tank, reveals a crisis in children’s autism assessment.

The report warns that thousands of autistic children and young people are waiting months—or even years—for health and education support.

With the number of children accessing autism services now at a record high, the report, A country that works for all children and young people: An evidence-based plan for addressing the autism assessment and support crisis shows how most parents are being left to navigate a complex support system for their autistic child that is hampered by processing delays and waiting lists.

The University of Liverpool’s Professor Melissa Gladstone, a co-author of the report, said, “The number of children accessing autism services is at a record high with the majority of children waiting for as long as two or three years for assessments. If we want to ensure an inclusive society that respects the rights of all children, we need to move away from a ‘diagnosis-led’ system to one where we can promote inclusion and well-being from a needs-led approach from as early as possible. This report tackles some of these issues and provides recommendations about how we can move forward to addressing these huge inequalities in care for children.”

The report sets out a number of key recommendations for tackling the assessment crisis, calling for a “needs-led” approach instead of relying on a “diagnosis-led” system, where early identification becomes the norm and faster effective support is offered without relying on a diagnosis. It argues that children and young people with autism and conditions such as ADHD can thrive in mainstream education if their needs are supported in a timely way. Early identification and support can mitigate the negative and costly effects on autistic children’s physical health.

It highlights how since COVID-19 there has been a 306% increase in the number of children waiting for an autism assessment. Just 1 in 10 children are receiving an appointment within 13 weeks of being referred, while more than 1 in 4 parents have waited over three years to receive support for their child.

The report warns that the failure to provide the right autism support can lead to poor long-term outcomes for autistic children, including an increased prevalence of connected conditions such as mental ill health and a greater risk of school exclusion or not attending school. Data from the Connected Bradford database included in the report reveals that children who had been referred but were still waiting for an assessment were at greatest risk of being excluded from secondary school.

Autistic children who had a diagnosis were less likely to be excluded from school, compared to those awaiting an assessment, suggesting a diagnosis and subsequent support has a protective effect. With waiting times increasing, there is a growing risk to education outcomes, with evidence suggesting that many autistic children are ending up in expensive Alternative Provision.

The report also describes how a major barrier to existing systems is the perceived need for a medical diagnosis of autism before any child can receive support, with the perception among schools that this is a requirement, preventing some children from accessing support. Given the long waiting lists, many autistic children are not receiving the support they need because they do not have a formal diagnosis.