Waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions 

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 3-year-old autistic child in hospital. In 2024, situations like these are happening every day in England.  

This report sounds the alarm on the largely invisible crisis happening in children and young people’s community and mental health services, as well as the wider SEND system. These services have not been resourced to keep pace with the increasing need for assessment and support for children with neurodevelopmental conditions, such as autism and ADHD. 

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 has huge knock-on effects for the capacity of statutory services, which are often the last resort.  It is shocking to me just how many providers have published apology messages and videos about the long waits for their neurodevelopmental assessment pathways. It is not surprising that this report finds that children are often waiting years for the assessment and support services they need: on average a child waits over a year for an appointment with a community paediatrician, and two and a half years to see a school nurse. At such a critical time developmentally, every day a child waits for support could permanently alter their life course.

Children and families are often left in the lurch, expected to cope by themselves while they wait. As the report highlights, tragically children’s unmet needs can escalate to the point of crisis. I think of Kyla,[1] a 14 year-old autistic girl who my Help at Hand team have been supporting. Despite Kyla’s behaviours becoming more and more distressed, and her parents crying out for help – health, social care and education failed to put in place the interventions she needed. Kyla ended up being admitted to hospital multiple times, and the police became involved. This could have been avoided, had the right early support been given.

And let me be clear: this is an equalities issue. While all children with unsupported neurodivergence are suffering, it is the most disadvantaged children who are disproportionately impacted. These children do not have the option of accessing private assessment and therapy. Their parents are not always able to ‘fight’ for their child to access their legal entitlements.

In failing to provide timely support, we are not only wasting public money – we are robbing children of their childhood and their potential. In the short-term, hundreds of thousands of children are missing out on the support they need to flourish. At the same time, we are wasting tens of millions of pounds of taxpayer money on tribunals,[i] with children and their families’ appeals upheld almost every time.[ii] 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 must work to prevent children who could go on to live fulfilling, independent adult lives being made dependent on the state. We can prevent this by giving children the support they need now, and moving to a needs-led – rather than diagnosis-led – system of support. 

While the focus of this report is waiting times in health services, the solution to this problem goes beyond the health system. I firmly believe that with better integration between health, education, and social care, many more children’s additional needs could be identified and supported without families feeling forced to seek a diagnosis. That will mean better training and ensuring ‘front door’ services – such as nurseries, schools, and family centres get the resources and support they need.

I want to thank the children, young people and families who shared their stories for this report. Their heartbreaking testimonies of the battle for support are the individual lives behind these shocking figures. In a modern health and care system which prides itself on founding principles of equality and fairness, children and their families should never have to ‘beg’ or ‘fight’ for help. Yet sadly these are the words I hear most often when asking about seeking support for a child’s neurodivergence. 

I am delighted that the government have committed to ensuring that this generation of children is the healthiest yet. The NHS is rightly at the heart of the government’s vision for change, promising to “shift our NHS away from a model geared towards late diagnosis and treatment.” The current system is certainly broken, but not beyond repair. We can learn from the areas that are getting it right. If children with neurodevelopmental conditions are supported as and when their additional needs present – in their homes, schools and communities, the NHS can prioritise assessing children who would benefit from clinical interventions which require a diagnosis. Children and families are clear that this change cannot come quickly enough.

Read the report here.

“Give us more choice, we are very capable! Give us the same chances the other kids get, without punishing parents or us.” – Autistic child, aged 15.

“No child in the system should be forced to survive. They should be thriving.”– Parent of autistic girl aged 13.

“We could either put those children on the right tracks and get them excited about the future, or we can expect social care, housing and adapted living as sort of a mainstream way of life. I think the government’s got a choice now and I think this is the right moment.” – Parent of autistic boy aged 5.

[1] Not her real name.

[i] Pro Bono Economics. Wasting money, wasting potential: The cost of SEND tribunals. 2023. Link.

[ii] Ministry of Justice, Tribunal Statistics Quarterly: July to September 2023, 2023. Link.