Ex-children’s commissioner: Urgent reform needed amid autism assessment crisis

Thousands of children are struggling without the support they need while parents “battle their way through a nightmare process” amid lengthy waits for autism assessments, a former children’s commissioner has said.

Anne Longfield (pictured) noted the “terrible and damaging consequences” for children’s mental health as well as their educational opportunities as backlogs build up in the system.

The first report from her Centre for Young Lives, in partnership with the Child of the North initiative, contains a series of recommendations on changes needed to support autistic children.

Among these is a call for support to be provided in schools and nurseries before a child receives a formal diagnosis, to avoid them “failing while waiting”.

The report stated: “A major barrier in our existing systems is the perceived need for a medical diagnosis of autism before any child can receive support.”

It argued that the health system “simply cannot meet the demand for all such assessments”, and said that “in turn, this can prevent timely access to the essential help a child needs in school”.

The report added: “From an educational perspective, this lack of equitable provision can result in children ‘failing while waiting’ because of system failures.”

According to NHS figures published in September 2023, there were 157,809 patients in England with an open referral for suspected autism.

Analysing existing data, the report said the number of children waiting for an autism assessment had tripled since the pandemic.

Despite guidelines from the National Institute for Health and Care Excellence (Nice) recommending no longer than 13 weeks between referral and a person’s first assessment, the report said only one in 10 children had an appointment within that timeframe.

The report has made three recommendations to Government which it said have the potential to cut the long-term costs associated with delayed support.

It said there need to be “effective partnerships between education and health professionals for assessing and supporting autistic children”, including assessments in education settings and providing support in schools and nurseries before and after a formal diagnosis is made.

It also called for better training for health, education, and social care professionals “that improve understanding and awareness of autism (and related issues)” possibly co-produced by individuals with lived experience.

There should be formal partnerships at a local authority level made up of sector leaders from schools, health, voluntary services, faith and businesses to “oversee a prioritised governmental ward-level approach to addressing the autism crisis”, the report added.

Ms Longfield, who is 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.

“We 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 shows, 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.”

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 road-map and we need to act at pace to ensure these recommendations are implemented.”

The report, which is the first in a series of 12 to be published during 2024 on encouraging politicians to focus on the interests and life chances of young people when it comes to policy making, was also produced by the N8 Research Partnership, made up of eight research intensive universities in the north of England.

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