Autism assessment delays 'causing North East families extra stress'

Paul, Rebecca and their two children are all caught up in what they describe as a worrying backlog

A growing backlog of people waiting to be diagnosed with autism is putting an unacceptable strain on families and damaging children's mental health, a North East charity says.

The NHS waiting list for an assessment in the region has doubled in 18 months.

Some people are now being told they face a wait of several years.

The North East Integrated Health Board, which is responsible for tackling the backlog, says delays are the result of a surge in demand.

In October 2021, 8,260 people were waiting. In the latest set of figures ending in April 2023 that number had risen to 16,765.

While the NHS has a target of offering an assessment within 13 weeks, the North East Autism Society says it knows of families who have been told they could be waiting up to six years.

In some parts of the North East 98% of assessments are happening outside that 13-week target time.

Husband and wife Paul and Rebecca, and their children Nathan and Emily, from Gateshead, have all been assessed or referred for assessment.

Six-year-old Nathan has been diagnosed as autistic, but the rest of the family are languishing in the backlog.

Emily, who is five, could be waiting another 18 months for an appointment.

The family say the wait is causing stress and disruption

Rebecca says that is putting strain on the family and has the potential to cause long-term damage to Emily's development.

She said: "We have meltdowns, we have tantrums, she will scream, she will cry, and it's so upsetting to see her like this, knowing that it could continue for a year-and-a-half before we get the diagnosis and access to the support she needs.

"I don't know how anyone could deal with that and not think why is she having to wait."

'Unbelievable stress'

In addition, Paul has been on the waiting list for a year, and Rebecca is facing an 18-month wait after also being referred for assessment.

The delay is also preventing them getting support, and adjustments made at their workplaces.

Rebecca added: "Autism doesn't just run in this family, it sprints through it, and having seen the signs in Nathan, I can see it in all of us.

"It causes unbelievable stress in our house. We are all at different stages and we all need different support, but at the moment we can't access any of it.

"If this was physical health, if someone was diabetic, people wouldn't be saying wait 18 months."

The North East Autism Society says the backlog is causing strain for thousands of families, including many it is trying to support.

Getting a diagnosis can give peace of mind as well as support.

Its family development manager Kerrie Highcock said: "Families are completely fed up because they are going round in circles.

"They're continually waiting for calls or to be seen by a professional. The other thing that is happening is the mental health of our young people is really deteriorating.

"Some families are paying for private assessments, but many can't afford that so it's adding to health inequalities."

Rebecca is facing an 18-month wait after being referred for assessment

The region's MPs are also dealing with a mounting caseload of unhappy families.

Darlington Conservative Peter Gibson says he is aware of 350 families on the waiting list in his constituency.

He has raised the problem with ministers and local health officials.

He said: "Many families are looking to have the assessment done in order to know their child is in the right school, getting the right support and education.

"Without that there is that challenge of being in a state of limbo."

The North East Integrated Health Board, which was formed last year, said: "We know that there are children and adults in our region who are waiting too long for an assessment, and this can be very difficult for the person and for the people who care for them.

"We are very much aware of the importance of these services to families - which partly result from a major increase in need over the past three years - and we are working hard with our partners to reduce waiting times."

With demand still growing though, there seems little chance of the backlog being cleared any time soon and Rebecca thinks families like hers are being forgotten.

"It feels as if it's not important," she said.

"It feels like we are bottom of the list and that nobody cares about these children and getting them access to the help that they need."