The report, ‘A country that works for all children and young people: An evidence-based plan for addressing the autism assessment and support crisis’, reveals a ‘crisis’ in children’s autism assessment.
With the number of children accessing autism services now at a record high, it 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’.
It is the 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.
Key findings from the report include:
- There has been a 306 per cent increase in the number of children waiting for an autism assessment.
- 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 recommend 13-week waiting period.
- In September 2023, there was a 27 per cent rise in new autism referrals over the last year.
- Children and young people from ethnic minority backgrounds are experiencing lower rates of identification of autism and often experience more severe difficulties.
It also highlights 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.
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 makes three recommendations to Government, they are to:
- Build effective partnerships between education and health professionals for asserting and supporting autistic children. It says 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 CPD courses for health, education and social professionals that improves understanding and awareness of autism.
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.
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.
‘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.’
Professor Mark Mon-Williams, Chair in Cognitive Psychology at the University of Leeds, added, ‘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.’
