A new report supported by academics from the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) has revealed an ‘autism assessment and support crisis’, with tens of thousands of children waiting months and years for help.
The work has been published by the Child of the North initiative – led by the N8 Research Partnership of Northern universities, Health Equity North, and former Children’s Commissioner Anne Longfield’s new ‘Centre for Young Lives’.
It includes recommendations and evidence-based solutions for tackling delays in assessment, calling for a ‘needs-led’ approach, where early identification becomes the norm and faster effective support is offered without relying on a diagnosis.
The report has been co-authored by Professor Judith Rankin (Newcastle University) and NIHR ARC North East and North Cumbria’s theme lead for Supporting Children and Families; and Dr Anna Basu (Newcastle University) and an active member of our Supporting Children and Families research group.
Professor Rankin said: “This report lays bare the challenges to autistic children and their families to access the support they need. The time is now to take action to support these children and improve their life chances.”
More about the report: An evidence-based plan for addressing the autism assessment and support crisis
The report’s analysis found that:
- 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.
- 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 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.
It also sets out a number of key recommendations for tackling delays in assessment, 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.
And highlights how since Covid-19 there has been a 306% increase in the number of children waiting for an autism assessment.
The report also 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.
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.
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.”
More about the report
This 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.
- Child of the North is a partnership between the N8 Research Partnership and the Northern Health Science Alliance / Health Equity North, and includes partners from across the North of England. Its vision is to develop a platform for collaboration, high-quality research and policy engagement to support fairer futures for children living in the North of England. The N8 Research Partnership (N8) is a strategic collaboration between the universities of Durham, Lancaster, Leeds, Liverpool, Manchester, Newcastle, Sheffield, and York, and aims to maximise the impact of this research base to enable business innovation and societal transformation. The N8 universities receive around 80% of competitively awarded research funding in the North of England, or around £1.2bn annually, and employ more than 18,000 academic staff, forming the largest research-pooling partnership in the UK. N8 creates programmes involving a critical mass of world class academics which form networks of innovation excellence with partners in other sectors, to drive investment and economic growth.
- Health Equity North is a virtual institute focused on place-based solutions to public health problems and health inequalities across the North of England. Health Equity North brings together world-leading academic expertise from the Northern Health Science Alliance (NHSA) membership of leading universities, hospitals, and academic health science networks, with the aim of fighting health inequalities through research excellence and collaboration.
The Centre for Young Lives launches today. It is a new, dynamic, innovative, independent think tank and delivery unit dedicated exclusively to improving the lives of children, young people, and families in the UK. The Centre for Young Lives’ experienced team will provide informed and expert insight, produce quantitative and qualitative research and