New analysis reveals autism assessment and support crisis with tens of thousands of children waiting months and years for help after demand rockets by over 300% since Covid
- First report in a year-long series on how to deliver a country that works for all children by the Child of the North initiative in partnership with Anne Longfield’s new Centre for Young Lives think tank sets out a new plan to support autistic children.
- Report reveals more than one in four parents have waited over three years to receive support for their autistic child.
- Just one in ten children receive an appointment within the recommended 13 week waiting period.
- Report calls for more assessments to take place in nurseries and schools and more support for autistic children before diagnosis, and for new formal local partnerships between schools, health, voluntary services, and universities.
A report published today (Friday 2nd February) 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, 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.
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 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 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.
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 September 2023, there was a 27% rise in new autism referrals over the last year.
- 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.
- 93% of children did not receive an appointment within 13 weeks of being referred.
- The number of children yet to receive an appointment after 13 weeks has increased by 36% since Covid-19, and there has been a 21% increase in the last twelve months.
- More than one in four parents have waited over three years to receive support for their child.
- The evidence 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.
- 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 the 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.
It makes three key recommendations to Government which have the potential the decrease the long-term costs associated with not acting early:
- Building effective partnerships between education and health professionals for assessing and supporting autistic children. This should include delivering assessments in education settings and making a holistic offer of support in schools and nurseries before and after a formal diagnosis is made.
- 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). 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.
- Creating formal partnerships at a local authority level comprising sector leaders (including schools, health, voluntary services, faith, universities, educational psychologists, and businesses) to oversee a prioritised governmental ward-level approach to addressing the autism crisis. The partnership should focus on its most disadvantaged wards and provide leadership in trialing data-driven, community and family co-produced, “whole system” approaches to improve autism support with and through education settings.
The report also argues that planning and resourcing for diverse needs should be baked into the school system, rather than seeing both as an optional extra. This could include relaxing individual school uniform policies to support autistic pupils with sensory issues who can’t tolerate wearing a uniform, removing the sounding of a bell between classes to generate a calmer atmosphere, and a consistently structured school day with calm transitions between lessons and lunch time.
The research highlights the SUCCESS (Supporting Understanding of Children’s Communication, Emotional and Social Skills) project trialled in 10 Bradford primary schools which deployed multi-disciplinary teams within the school gates to conduct autism assessments for children identified as being at risk of undiagnosed autism (and other neurodevelopmental disorders). The evidence showed that clinicians were able to combine their clinical observations with those of teachers, who observe the child working. The SUCCESS approach allowed more children to access autism services and thereby reduce the likelihood of missed appointments and the resultant costs. The evidence from the trial suggests this approach could provide major long-term savings and reduce waiting times for autism assessment and support.
The report highlights the Early Identification of Autism project in Nottinghamshire, aimed at identifying communication and interaction needs in 7–11-year-olds to reduce assessment waiting lists and promote early intervention. The project brought together health and education services to undertake assessments so that timely, appropriate support could be identified and delivered to children, families, and schools at a much earlier stage in a child’s educational journey. The evidence showed that training allowed school staff to gain a unique insight into the diagnostic process and improve knowledge about autism. In turn, this led to children’s needs being identified and tailored support offered at an earlier stage.
The report’s authors also asked students at Limpsfield Grange, a special school in Surrey, to reflect on their experiences before they joined the school. They described being made fun of, called “dumb” and “stupid”, and being left out of games, or being put in groups away from the rest of the class. One student recalled being kicked out of school after their parents told the school about their diagnosis. The students suggest teachers should be taught about autism, neurodiversity, and mental illness, and call for movement breaks if children are feeling stressed, counsellors in schools, and for schools to acknowledge that autistic children shouldn’t get into trouble for reacting in non-neurotypical ways.
Anne Longfield, Executive Chair of the Centre for Young Lives, said:
“The number of autistic children seeking support is at a record high and the number waiting for an assessment has rocketed since Covid. The autism assessment 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.
“Without urgent reform, we cannot hope to improve the life chances of the next generation. As this report highlights, change is possible – and it is happening in some schools and local areas already. What is needed now is the determination from the Government and others to make it happen everywhere.”
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.”
Professor Mark Mon-Williams, Chair in Cognitive Psychology at the University of Leeds, said:
“Autistic children and their families are being failed by systems that are not fit for purpose. This report provides hope with its evidence-based recommendations for how the system can be changed to build a better UK for children and young people. We now have a roadmap and we need to act at pace to ensure these recommendations are implemented.”
Today’s report has been produced by eight research intensive universities in the North of England – the N8 Research Partnership – in collaboration with a wider academic community (the N8+) as part of the Child of the North initiative, and the new Centre for Young Lives think tank, founded by former Children’s Commissioner Anne Longfield.
It is the first in a series of twelve Child of the North/Centre for Young Lives reports to be published during 2024 looking at how to encourage the Government and Opposition to reset their vision for children and show how putting the interests and life chances of young people at the heart of policy making and delivery is crucial to Britain’s future success.
They will shine a light on some of the biggest challenges facing the Government, including reducing child poverty, and improving support for children with mental health conditions, while also providing rigorous research and pragmatic, evidence-based recommendations which acknowledge the ongoing financial limitations on government spending.
While this report focuses on autism, it is grounded in seven principles that will be a theme throughout the twelve reports: the Government must “put children first”; inequality must be addressed; place-based approaches must be adopted; public services must work together more effectively; education must be at the heart of public service delivery; universities must become the ‘research and development’ departments for local public services; and information must be shared across public service providers and used effectively.