Thousands of autistic children waiting months for health and education support

A new report reveals a crisis in children’s autism assessment, warning that thousands of autistic children and young people are waiting months - or even years - for health and education support.

Published by the Child of the North initiative - led by the N8 Research Partnership of Northern universities and others - and former Children’s Commissioner Anne Longfield’s new Centre for Young Lives think tank, the report reveals more than one in four parents have waited over three years to receive support for their autistic child.

The data also showed long waits for clarity as just one in ten children receive an appointment within the recommended 13 week waiting period.

The report aims to create ‘an evidence-based plan for addressing the autism assessment and support crisis’ showing 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.

It highlights how since COVID-19 there has been a 306% increase in the number of children waiting for an autism assessment. Just one in ten children are receiving an appointment within 13 weeks of being referred, while more than one in four parents have waited over three years to receive support for their child. The data showed that 93% of children did not receive an appointment within the recommended period.

As one parent seeking an assessment for her child told the report’s authors, trying to receive an assessment was “an absolute nightmare … our systems in health and our systems in education don't link and can't talk, and we can't transfer things over, and things had to be logged in one place and not another.”

The report’s analysis reveals a system under unsustainable pressure. In July 2022, more than 125,000 people were waiting for an autism assessment by mental health services, an increase of 34% since the previous October. By July 2023, this number had risen to more than 143,000. Figures published in September 2023, show there were 157,809 patients with an open referral for suspected autism.

The evidence also shows that children born to mothers without educational qualifications will receive an autism diagnosis two years later than their peers, and that issues around timely identification and support are exacerbated for girls, who are more likely to be misdiagnosed and diagnosed later than boys, or not at all. Furthermore, children and young people from ethnic minority backgrounds are experiencing lower rates of identification of autism and often experience more severe difficulties.

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.

The report sets out a number of 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.

One way this can be tackled is by providing and extending access to mandatory Continuing Professional Development (CPD) courses for health, education, and social care professionals that improve understanding and awareness of autism (and related issues), the authors argue. These courses should include information on how to create “neurodiverse friendly” environments, and particularly raise awareness of autism in girls and ethnic minority groups. Additional training should be co-produced by individuals with lived experience and delivered to professionals and integrated into undergraduate health and education professional training to improve the identification of autistic girls.

Anne Longfield, Executive Chair of the Centre for Young Lives, said the crisis is leaving thousands of children without the support they need and parents having to battle their way through a ‘nightmare process that can take years to resolve’.

“The pressure and stress this is putting on families and children can have terrible and damaging consequences for mental health and for children’s education chances. Autistic children with a referral who are waiting for an assessment are at significantly greater risk of exclusion from school, with all the further risks that can bring. If waiting times continue to increase, so can the risk of increased exclusion and poorer educational outcomes for autistic children.

“The evidence shows the need to move to a system of support that responds to the needs of autistic children, rather than waiting for diagnosis before any help appears. The education sector and health services should be working together, sharing data and information, and building local partnerships that can transform the support autistic children receive.”

Dr Camilla Kingdom, President of the Royal College of Paediatrics and Child Health, said: “We hear from families over and over again about how distressing the current systems are for autistic children - from the incredibly lengthy waits many have to endure awaiting diagnosis, through to a support system which is patchy at best.

“I commend this report which has been written with significant contributions from children and families with lived experience. I am convinced that we need to move from detailed descriptions of our failing system, to action - and this report provides the evidence base to do just that."