Children 'in limbo' over NHS autism waiting times

Danielle Dickinson (left) and Gemma (right) have been waiting for their children to be assessed

Waiting lists for autism services are at their highest in five years for young people in the North East and North Cumbria, recent NHS data shows.

In the region, young people are waiting on average of one year and five months for NHS help - and some have waited more than four years.

Parents have spoken of their frustration and about how their children feel "in limbo".

The NHS North East and North Cumbria Integrated Care Board (ICB) said improving access to assessment, diagnostic and support services for children and young people was a "key priority".

The average waiting time in England is under a year, according to figures.

However, figures for the region's ICB, which is responsible for commissioning autism assessments, showed it was currently the eighth worst for long waits.

Lesley Henderson, founder of autism charity The Toby Henderson Trust, says a diagnosis is crucial

Lesley Henderson, CEO and founder of the North East autism charity The Toby Henderson Trust, said a diagnosis was "crucial".

"It opens doors to access services," she said.

"But it also provides a signpost for how to look after somebody and how to support somebody."

Gemma, 43, from Westerhope, Newcastle, has been waiting almost two years to get her 12-year-old assessed.

They were put on the waiting list in October 2022 and has only now been told that the organisation is "working through a backlog from April 2021".

The teaching assistant said: "My child is in limbo - they just feel a little bit different.

"It's very frustrating that you're not able to do anything as a parent, all you're doing is ringing up and seeing where your child is on the list.

"You're just told there's a long wait - it's not really a good enough answer."

'Can't go to school'

Danielle Dickinson, 31, a business owner from Morpeth, Northumberland, said she waited almost four and a half years for her now 11-year-old son Wyatt’s autism diagnosis in 2019, and is back on the waiting list for her youngest son, Zuri, aged three.

He has been there since February and she said she will not send him to school until he has a diagnosis.

She said: "Having that in place says, 'actually, I’m not doing anything wrong, it's not my parenting', I have that stamp to say there is something neurodiverse with my child - it does add an extra layer of protection."

She added: "He will not be going anywhere until he has that parcel and package ready to go and say 'this is what he needs, this is what you're going to deliver'.

"So not having a diagnosis has had a massive impact to schooling and education because he simply can't go at the minute."

'Not acceptable'

An ICB spokesperson said referrals for assessments for children and young people nationally had "increased significantly".

"The North East and North Cumbria has seen similarly high increases in referrals," they added.

"For every referral received each month before the pandemic, there are now approximately five referrals each month."

It admitted that the length of time some people were waiting for a detailed clinical assessment was "not acceptable" and it was continuing to explore support.

"We understand the impact this can have on children and their families and we are committed to improving access as quickly as possible," the spokesperson added.