Autism diagnosis delays 'terrifying' for parents

Laura Spence said the wait for her daughter's autism diagnosis affected her mental health

Parents of children on the waiting list for an autism diagnosis in Guernsey have described the process as "incredibly hard".

Most children waiting for an assessment for autism are seen after about 18 months.

However, parents said there was very little advice and support they could access during this time.

The Committee for Health & Social Care acknowledged the wait to be assessed could be "frustrating" for families.

Earlier in March the committee launched an initiative to help tackle increased demand.

It said it would commission a UK-based company to carry out assessments over six months as part of the initiative.

Families who spoke to the BBC said they had felt unsupported while waiting for their children to be assessed.

Rachel Wyatt said it took about two years from start to finish for her son to be assessed.

"It was the loneliest and the most terrifying thing I've ever been through," she said.

"The thing that is so difficult about it is that you're having contact with these professionals and they're doing tests and they're giving you information, but then you have to go home and be the carer for your child.

"All day, all night, for two years, I'm at home with my son and I know he needs something but I don't know what it is."

'Struggled to manage'

Laura Spence said she was under the impression her daughter had been on a waiting list in 2017.

However, she said she was never on the list, and subsequently was not diagnosed until December 2023.

"That's quite a big chunk of her childhood that we struggled to manage," she said.

"It was really difficult because you're fighting fires at home while working full-time and not getting any time off.

"I think it does massively affect your mental health as a parent."

'Long and arduous'

Katie Clark said her son was labelled as unruly before receiving an autism diagnosis after two years of seeking a referral on top of two years on the waiting list.

"It was a long and arduous process, and, along the way, we weren't given any advice as to how long away the appointment might be or when we could expect it," she said.

"In the interim, there isn't really any help you can access in terms of talking therapy or counselling to help you as a parent or help your child."

She said the lack of support during that time has affected his ability to learn and to socialise at school.

"We feel like we've let him down," she said.

'Cannot control demand'

The States said there were currently 250 children waiting for an assessment for autism in Guernsey, which was an increase on previous years and more than the diagnostic service had capacity to see.

Deputy Al Brouard, the president of the Committee for Health & Social Care, said the States recognised there were difficulties.

He said: "We cannot control the demand for the diagnostic pathways, where people are referred into from their GPs, and we recognise how important they are for those they support – and how frustrating the wait can be for them and their families."

The committee said it was also looking at potential options to increase the capacity of the ADHD Diagnostic Clinic, which is facing similar demand-based challenges.