Oct 18, 2024, Children’s Commissioner: “We are robbing children of their childhoods” – new data reveals years-long waits for children’s autism diagnoses
In 2024, we would never imagine that children in this country are being told they cannot access their education because there is no suitable school for them. We would not expect that some children are non-verbal and wearing nappies well into the primary school years, because they haven’t been able to get the help they needed sooner. It is unthinkable for parents to be told the only option for them is to sedate their distressed three-year-old autistic child in hospital.
Yet, situations like these are happening every day in England.
Children with neurodevelopmental conditions like autism are spending years of their precious childhoods in limbo, waiting for assessment, then diagnosis, then support. Parents are having to fight every step of the way, and as they reach each hard-won stage they are left with a baffling set of forms, options and decisions. . . .
This week I published new and novel research that sounds the alarm on the crisis taking place in the services supporting children with suspected neurodevelopmental conditions – largely invisible to the public eye, but which is all too evident for the increasingly desperate families affected. For the first time, data from the two routes of referral available to children with these conditions – community health services and children’s mental health services – will help to build a clearer, more joined-up picture of children’s level of need. . . .
Taking autism specifically, incomplete data means we still cannot give a definitive answer to the seemingly straightforward question ‘How long are children waiting to be
diagnosed?’ Data on how long children with suspected autism wait in mental health services is given as an average, and then simply by ‘more than 13 weeks’ or ‘less than 13 weeks’ – and there is no data collected at all on the waits experienced by children referred through community health services for an autism diagnosis.
But the answers that we can put forward, by using my statutory powers to gather unpublished data, looking across these different datasets and working backwards to calculate solid estimates, will make for sobering reading.
In children’s mental health services, 47,300 children were referred in or before the 2022-23 financial year with suspected or diagnosed autism. Of these, just 13,000 (28%) had a first appointment. More than half (24,500) were still waiting for their first appointment by the end of that year, while another 20% (9,430) had their cases closed before that first contact.
A child waiting for a diagnosis of autism waited, on average, 527 days from the point of referral in children’s mental health services in 2022-23 – that’s one year and five months of their life.
But when referred through community health services, children waited an average of 791 days, or two years and two months of their life in 2022-23. Almost one sixth of children referred through community health services waited more than four years for a diagnosis of autism in 2022-23. That’s a full key stage of education, and nearly a third of their time in compulsory schooling.
These are all waiting times up the point of diagnosis – it doesn’t include the hidden time children then have to wait to actually receive the support they need.
At such a critical time developmentally, every day a child waits for support could permanently alter their life course. . . .
We need to act now to create a system that intervenes earlier in response to each child’s needs, not one that is so heavily reliant on diagnosis. Lots of children have told me they don’t need or want labels to get support – they just want the adults in their lives to be as ambitious for them as they are for themselves. . . .
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