An abridged version of the below blog appeared in The Sunday Times on October 13th.
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.
As one parent of a 13-year-old autistic girl told me: “It’s like 45 keys are needed to unlock one door.”
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.
It will also identify crucial gaps in information, through painstaking and complicated analysis.
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But the answers that we can put forward, by using my statutory powers to gather unpublished data, looking across these different datasets and working backwards to calculate solid estimates, will make for sobering reading.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 owe these children so much more than this.
Children want to be in school. They love their teachers, and sharing experiences with their friends, and when given the right support in mainstream education, children with additional needs are often happier and outperform their peers.
Instead, we have created a system which is working against itself, forcing children and families to jump through endless hoops to get the help they need. This has huge knock-on effects for the capacity of statutory services, which are often the last resort, and families are often expected to cope by themselves while they wait for answers.
Too often, my report will show, children’s unmet needs can escalate to the point of crisis – seemingly exacerbated, families have indicated, by a ‘wait and watch’ approach taken by some professionals, and often with stark consequences.
My advice service Help at Hand supported one 14-year-old autistic girl, Kyla (not her real name), whose parents were crying out for help as her behaviour became more and more distressed. She has lost multiple places at other schools because they couldn’t meet her needs and her family has faced long periods of crisis, with multiple interactions with hospital admissions and the police – all could have been avoided, had the right early support been given.
Another child in my report, aged 13, waited more than 20 months for an autism assessment, with the referral escalated after 17 months due to a mental health crisis. During this time her needs and anxieties increased, impacting her personal hygiene, diet and ability to attend school or even enter shops.
Another was assessed for autism virtually during the Covid-19 pandemic, resulting in no diagnosis, only to be re-referred by her school and diagnosed with autism 22 months later following a face-to-face assessment – two years after her first referral.
In failing to provide timely support, we are not only robbing hundreds of thousands of children of their childhood and their potential, but we are also wasting tens of millions of pounds of taxpayer money on tribunals, with children and their families’ appeals upheld almost every time. We are storing up a tidal wave of demand for adult social care services, with neurodivergent children who do not get the right support disproportionately likely to grow up experiencing problems with poor mental health, substance misuse, and offending behaviour.
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.
That means improved support in mainstream schools, where frontline staff have the tools and training needed to provide the best learning environment possible for every child and fewer children and parents feel they need a diagnosis just to get help. We need better integration between health, care and education services, with families’ experiences at their heart. And we need more appointments available, so that when children do need a diagnosis, they can get one without delay.
This government has pledged to create a version of the NHS that is no longer geared towards late diagnosis and treatment, and I was pleased to have heard education ministers recently confirm that repairing the broken SEND system is a top priority. Attention is finally being paid to this most urgent of issues – I challenge ministers and NHS chiefs to move quickly and decisively.
For children and their families, change cannot come quickly enough.
