A charity chief has warned “lives are being blighted” by a "system in crisis" after new figures revealed more than 1,500 extra patients with suspected autism are waiting for diagnosis this year.
New NHS England figures have shown that the number of people waiting for an autism assessment in North East and Cumbria is up more than 9%, from 19,245 last year to 21,030.
Across England, there were 204,876 patients with an open referral for suspected autism across the country in September, a 27% rise from 161,827 the year before.
The expanding waiting lists - which had already doubled in the region between October 2021 and April 2023 - have been branded a crisis by John Phillipson, chief executive of the North East Autism Society (NEAS), which runs support groups for families.
The Government has since been called on to "urgently fix this broken system" with Tim Nicholls, assistant director of policy, research and strategy at the National Autistic Society, saying the figures should be "a huge wake-up call”.
Mr Phillipson told The Northern Echo: “We have watched the waiting lists for autism assessment grow alarmingly in recent years, and it’s clear that the system is in crisis.”
“Charities like us see first-hand the impact that waiting years for an assessment can have on an individual and their families.
“It is very difficult for people to get the support they need – at school, at work, in healthcare, and in their daily lives - without a diagnosis, and being left in limbo can put them and those who care for them under huge strain.
“We understand the Government intends to address this issue, but we would urge them to make it a priority because lives are being blighted.”
In the NHS North East and North Cumbria Integrated Care Board area, 93% of the patients (19,475) had a referral that had been open at least 13 weeks.
The NHS target is for every patient with a referral to receive a first appointment within 13 weeks.
Meanwhile, just 11% of the patients with an open referral for more than 13 weeks entering September in the North East and north Cumbria received a first appointment that month.
The median waiting time for a first appointment across England is 43 weeks.
Mr Nicholls added that, too often, people are unable to get support without a diagnosis “even though this shouldn’t be the case”.
He continued: "Waiting for months or years for an assessment leaves people struggling without the right support, increasingly stressed and anxious.
“It pushes some people to a mental health crisis."
He added without public investment the crisis would persist, "leaving autistic people, families and NHS services under strain".
An NHS England spokesperson said: "While there remains a high demand for autism assessments, we are seeing an improvement in the number of assessments completed.
"But we know there is more to do, which is why we have published new national guidance to help local partners deliver high-quality autism assessment services and to manage the 161% increase in referrals over the last four years while providing enhanced autism training for psychiatrists."
NHS aware people ‘waiting too long’ for assessment in region
Levi Buckley, chief delivery officer at NHS North East and North Cumbria Integrated Care Board (ICB), said: "We are aware that adults and children in our region are waiting too long for an autism assessment, and we know how difficult this can be for patients and families.
"Referrals for autism assessment have increased dramatically over the past few years. It is really positive that people are more aware of autism and autistic traits - which means more adults and children come forward for assessment - but it does mean that services have found it hard to keep up with demand.
“This is a challenge right across the country.
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"We have recently increased annual funding for autism and neurodiversity services in the region by more than £3 million per year, and this will help to support autism assessment as well as pre and post-diagnostic support.
“We are working closely with our service providers to improve the support that is available.
"These services depend on a highly trained, specialist workforce, and it will take time to increase this in order to meet demand."
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