North Yorkshire and Humber: Long waits for autism diagnosis

Siân Balsom, manager of Healthwatch York, said without a diagnosis there is “there is no help and support” available for people with autism.

Julia Casserly, director of communities at United Response, who coordinates the charity’s supported living and community support services, added that “adequate funding and resources are needed to better support the care system”.

An NHS spokesperson said the NHS is “fully committed to supporting and improving the lives” of those with autism.

The National Institute of Health and Care Excellence (NICE) has set a target time of 13 weeks for those with suspected autism to be assessed.

But figures from NHS England show around 4,545 people in the area covered by the NHS Humber and North Yorkshire Integrated Care Board had been waiting at least this long for an autism diagnosis at the end of 2023.

Of these, 71 per cent were under 18.

This was up from the same point a year before, when 2,615 people were waiting for 13 weeks or longer, most of them children.

Healthwatch York manager Ms Balsom told The Press: "We remain extremely concerned about waiting times for autism diagnoses, both for children and adults.

“We acknowledge that this is a national issue but this provides little comfort to the people waiting years to get the support they need.”

Siân Balsom, manager of Healthwatch York (Image: Supplied)

Across England, referrals for autism have been on the rise for both adults and children.

Analysis from the Nuffield Trust – a think tank – shows the 172,000 open referrals in December is the highest figure ever, and a five-fold increase since 2019.

Thea Stein, chief executive of the Nuffield Trust, called the rise in demand "unprecedented", saying the NHS is struggling to meet it.

Across the country 136,000 people were referred to NHS autism services in 2023, with 7,570 of them in North Yorkshire and the Humber.

In 2022 there were 112,000 new referrals.

Parents feel they have 'fought for years to get the diagnosis' - Healthwatch York manager

Ms Balsom added: “We routinely hear from parents who feel they have fought for years to get the diagnosis we need, and recently heard from one parent who has spent 10 years asking for help but is still waiting for an autism assessment to be completed.”

Ms Casserly from United Response told The Press: “It’s important to see that beyond the numbers there are individuals trying to get the support they need to live, work and thrive in their community.

“Our work supporting people with learning disabilities and autism in York has shown us that diagnosis is only part of the story, as further support is needed to tackle the systemic barriers to meaningful employment facing autistic job seekers.

“Adequate funding and resources are needed to better support the care system from diagnosis, education, employment and mental health support if we are truly going to reform the system for those who need it.”

Current system is 'not fit for purpose' - York Central MP

York Central Labour MP Rachael Maskell recognised that the NHS is experiencing an “unprecedented rise” in demand for autism assessments but said the current system in place is “severely underfunded to meet need and just not fit for purpose”.

“The latest statistics provided by the National Autistic Society for Humber and North Yorkshire ICB show that 79 per cent of people waiting for an autism assessment have been waiting longer than the NICE recommendation of 13 weeks. Such long waiting times are tremendously stressful for individuals and their families, delay access to treatment and support, and can lead to poor mental health outcomes for autistic people," she told The Press.

York Central Labour MP Rachael Maskell (Image: Danny Lawson/PA)

“We also know that waiting for a diagnosis can mean children do not receive the support they should in education. Schools are not being adjusted anywhere near as quickly as they should be to suit the needs of neurodiverse students, which can lead to stress, anxiety and poor attendance.

“This data is extremely concerning and shows the scale of the national action needed to address the waits for Neurodiversity assessment and treatment. This is an issue I have raised not only locally with the ICB but also in parliament and with ministers directly.”

• Read next: York patients 'abandoned' by lack of autism referrals

She added that it is “essential” to address the “huge gap” in NHS, education and local authority resources so that people diagnosed with autism are offered the follow-up support they need for the future.

An NHS spokesperson said: "The NHS is fully committed to supporting and improving the lives of those with ADHD and autism which is why we have published new national guidance to help local areas manage the 50 per cent increase in referrals they have seen.

"NHS England has also begun important work into investigating challenges in ADHD service provision and last month launched a cross sector taskforce alongside the government, to help provide a joined-up approach for the growing numbers of people coming forward for support."