The number of children and adults on waiting lists for autism assessments in the North East has more than doubled in the past 18 months, according to a new report.

There are 16,765 people with open referrals for suspected autism, up from 8,260 in October 2021, the North East Autism Society (NEAS) has found.

Some have been told it will take up to five years for them to get an assessment.

Guidance from NICE, the National Institute for Health and Care Excellence, states that nobody should wait for more than 13 weeks between being referred and first being seen.

Yet the vast majority of people in the North East – up to 98% in some areas – are waiting longer than that, according to figures from NHS England released this month.

John Phillipson, CEO of NEAS, said: “I am very concerned that the system appears to be in a state of collapse. 

From my conversations with colleagues in the local authorities around the region and in the health service, it’s clear the resources are not available to address assessment needs of people in the North East.

“And yet the Government’s own National Autism Strategy sets out the harms caused by delays in assessment, including falling into crisis and escalation of needs. We have to ask ourselves what exactly is happening here.”

The NHS figures, which go up to March, do not include pre-school children. But Dr Helen Leonard, consultant in paediatric neurodisability at the Great North Children’s Hospital in Newcastle, said they are also seeing an explosion in numbers.

Dr Leonard’s team used to get 36 referrals a year when she started a decade ago. Now it’s over 200.

“There has been a huge increase in numbers but there hasn’t been enough increase in resources to keep up,” she said.

There are more children referred but not more staff, that’s the bottom line. We have done every efficiency saving and service improvement we can, but we can’t do anything else without more resources.

The North East and North Cumbria Integrated Care Board (NENC ICB) is the NHS body that funds trusts and organisations in the region to carry out assessments for autism and other neurodevelopmental differences.

A spokesperson said: “We know that too many children and adults in our region are waiting too long for an assessment, and this can be very difficult for the person and for those that care for them.

"We have seen steady increase in the number of people being referred for autism assessment in our region, and the NENC ICB is working hard with partners and service providers to reduce these waiting times".

Meanwhile, families and individuals waiting years for a diagnosis are struggling.

Nicola Bulmer (pictured above), 42, of Newton Aycliffe, has three children on waiting lists for autism or ADHD assessment. She said: “Our family is living in a state of purgatory. My children can’t get the support that comes with diagnosis. They don’t understand who they are.”

Helen Cooper (pictured below), a GP who lives in Newcastle and works in Blyth, paid £3,000 for a private diagnosis for her five-year-old son after being told it would take up to three years on the NHS.

She said: “Not everyone can afford to do that. I’ve got patients who have been off sick from work for a long time because it’s impacting on their mental health and they’re struggling.

“They feel completely at sea – that long wait has a huge and detrimental effect on everything.”

Families are increasingly turning to private companies for a diagnosis, but there is no guarantee that the verdict will be accepted by their local authority or the NHS.

An autism diagnosis is important because it helps secure targeted support for children in schools. For adults, it can help secure disability benefits, reasonable adjustments at work and other forms of support.