I’ve lost count of the number of parents who have contacted me with upsetting stories about the nightmare of getting no support while trying to receive an assessment for their autistic child, and the impact on their child’s education.
Thousands of families are having to navigate a complex system while their child is stuck in limbo - not obtaining any of the help they need because the school does not know how to support their child without a formal diagnosis.
It’s no surprise autistic children waiting for an assessment are at greater risk of exclusion, not attending school, or ending up in expensive - and often poor quality - alternative provision.
A lack of timely support
As the joint report published this month by the Centre for Young Lives and the N8 Child of the North Research Partnership shows, there has been a staggering 300 per cent increase in the number of children waiting for autism assessments since the Covid-19 pandemic.
Yet only one in 10 children is receiving an appointment within the National Institute for Health and Care Excellence guideline recommended 13 weeks.
A quarter of autistic children are having to wait over three years to receive support - an extremely long time in a child’s early life. Autistic girls and autistic children from minority ethnic backgrounds are often missing out on receiving any assessment and support at all.
However, as the report argues, most autistic children can thrive in mainstream education if their needs are supported in a timely way.
There are policy changes that can be made to speed up assessments and support, and make schools more neurodiverse-friendly.
Stronger partnerships
There is a powerful, evidence-based case for moving away from a diagnosis-led system to a needs-led system, where early identification of autism becomes the norm and faster effective support is offered without first relying on a diagnosis.
To achieve that, we need stronger partnerships to be built between education and health professionals, including more assessments taking place in education settings and holistic offers of support in schools before and after a formal diagnosis is made.
A recent project in 10 Bradford primary schools saw multi-disciplinary teams conducting autism assessments in school for children identified as being at risk of undiagnosed autism.
Clinicians were able to combine their observations with teachers, who observe the child every day. This led to more children receiving the support they needed.
Training and changes
Of course, teachers cannot be expected to become experts in identifying autism but providing and extending access to mandatory CPD courses for education professionals that improve their understanding and awareness of autism would make a real difference.
We can’t rely on Whitehall alone to solve this problem.
We need to create formal partnerships at local authority level that include schools, health services, voluntary groups, education psychologists, businesses and academics, focused on data-driven, community and family co-produced whole-system approaches to improving autism support with and through education settings.
I’d encourage school leaders to read the report’s recommendations on how to bake planning and resourcing for diverse needs into their schools, creating a more neurodiverse-friendly environment.
Recommendations such as providing calm areas for children who need it, relaxing individual school uniform policies to support autistic pupils with sensory issues who can’t tolerate wearing a uniform and removing the sound of a bell between classes to generate a calmer atmosphere.
The evidence shows that the support autistic children receive can be transformed. Change is possible and is already happening in some schools and local areas.
What is needed now is a determination and drive from the government and councils to make it happen everywhere.
Anne Longfield CBE is executive chair of the Centre for Young Lives
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