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(UK) "Record high" number of children waiting for ASD assessment; up to 3 yr wait

Feb 2, 2024, Fe News: Autism Assessment Crisis: Thousands of Children Wait Months and Years as Demand Soars 300% Post-Covid

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….

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.  …

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….


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