Autism support should not require formal diagnosis, says Longfield’s new think tank

Support for conditions including autism and ADHD should be offered on a “needs-led” basis rather than forcing families to wait for a formal diagnosis, according to a think tank led by former children’s commissioner for England Anne Longfield.
Autism support should not require formal diagnosis, says Longfield’s new think tank

The report, published by the Child of the North initiative - led by the N8 Research Partnership of Northern universities and Longfield’s Centre for Young Lives - 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.

It describes 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 per cent increase in the number of children waiting for an autism assessment, adding that just one in 10 children are receiving an appointment within 13 weeks of being referred, while more than one in four parents have waited more than three years to receive support for their child.

In a series of recommendations to government, the report calls 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 states 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”, the report adds.

Researchers warn that failure to provide the right autism support can lead to poor long-term outcomes for autistic children, including an increased risk of mental ill health and 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,” it adds.

Three key recommendations put forward in the report include:

  • Building effective partnerships between education and health professionals for assessing and supporting autistic children.

  • 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, with additional training co-produced by individuals with lived experience and delivered to professionals to improve the identification of autistic girls.

  • Creating formal partnerships at a local authority level comprising sector leaders to oversee a prioritised governmental ward-level approach to addressing the autism crisis.

The report also calls for better planning for diverse needs to be “baked in” to the school system including elements like relaxing individual school uniform policies to support autistic pupils with sensory issues and removing the sounding of a bell between classes to generate a calmer atmosphere.

Longfield said: “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.”

The report comes following the publication of a report by MPs which finds that a review of education, health and care plans (EHCPs) could help ease a £4bn gap in council finance.

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