Children must wait for ‘crisis’ before autism diagnosis, say overwhelmed systems

Commissioners in North Yorkshire and York have become the latest to introduce new criteria for autism and attention deficit hyperactivity disorder referrals.

Getting a diagnosis is key to unlocking care packages such as speech and language therapy, counselling, or special educational needs.

They said the changes are due to “unprecedented demand that has exceeded supply, resulting in unacceptable wait times and the need to prioritise resources towards children and most at-risk adults”.

On Monday, they launched a three-month pilot for adults which will “change its approach to screening for neurodiversity”.

It involves a new referral form for diagnostic assessments which states it is only able to accept requests where immediate harm is likely due to a possible autism or ADHD diagnosis; there is imminent risk of distress due to access to major healthcare treatment depending on diagnosis; or imminent risk of family court decisions being determinant on diagnosis, such as a family breakdown or custody hearing.

From this week, referrals for assessments are being made directly through a web-based screening and assessment system, which scores responses according to the eligibility criteria and refers those who meet it to a treatment centre in York.

The new criteria have been introduced by North Yorkshire and York Health and Care Partnership, which is part of Humber and North Yorkshire integrated care system. HSJ has asked the ICS if other parts of the system are taking similar steps.

Bristol, North Somerset and South Gloucestershire ICS and specialist provider Sirona have signed off on similar criteria affecting children, in a move that has triggered legal action from parents.

A joint spokesman said that as there had been a “dramatic increase in demand for referrals in recent years”, they had taken a “clinically led decision to prioritise access for children whose needs are greatest”.

Similar profiling tools for autism assessments have also emerged in Portsmouth to reduce 18-month average waits, although eligibility criteria does not appear to have changed.

Children waiting five years

It comes as 140,000 people were waiting for autism assessments at the end of last year, an increase of 40 per cent from 2021. Just 12 per cent of those waiting had at least one care contact within 13 weeks, which is the NICE-recommended period for receiving treatment.

Tim Nicholls, of the National Autistic Society, told HSJ he fears the moves by a handful of services could be “a sign of what is to come”.

He added: “We are incredibly concerned about anything that makes it harder to get an autism assessment. Changing the criteria for referral will not make the problem of long waits disappear – it just increases uncertainty and stress for autistic people and their families.

“Only funding a system with enough capacity to carry out high quality assessments will do that.”

Mental health CEOs have raised concerns over this patient group in board papers. Berkshire Healthcare’s chief executive wrote that the trust was “determined to put its own house in order” after identifying rising numbers of people waiting more than two years for assessments, which it branded “unacceptable”.

Meanwhile, nearly 10 per cent of parents responding to a recent parliamentary survey said their child had waited more than five years for an NHS assessment.

NHS England said it is soon to publish a new autism assessment framework to aid commissioning decisions. It added: “NHS England planning guidance makes clear the expectation that local areas test and implement improvements in autism diagnostic assessments, including action to reduce waiting times.”