York: parents of autistic children speak of heartache

On Monday (April 15) The Press reported that 4,545 people in the area covered by the NHS Humber and North Yorkshire Integrated Care Board had been waiting months for an autism diagnosis last year, according to NHS figures.

But some parents told The Press they had waited years to get their child diagnosed with autism.

Ruth McAuley is still waiting to hear if her seven-year-old son has autism – two-and-a-half years after starting the process to get him diagnosed.

The 40-year-old, who lives in York, said her son struggles with emotional regulation which made her suspect that he could be autistic.

Ruth McAuley (Image: Supplied)

Mrs McAuley said she has been told they will get the final assessment within months.

She said her son is “really struggling at school” due to his condition.

“The school try to do what they can but they’re very limited on the funding,” she added.

Mrs McAuley hopes to receive an education, health and care (EHC) plan – a council-issued legal document stating what education and health needs your child has and what support they should get – to help him.

The plan, which can be obtained without a diagnosis, helps the school apply for extra money to support a child or helps the parents/guardians apply to get the child a place at a school better suited to them.

Mrs McAuley feels the support would benefit her son as he requires additional help while in class.

She added that school staff told her less support for her son could be available next year because they can’t afford to keep funding it themselves.

She fears this could mean her child doesn’t want to attend school.  

“I feel very stressed,” she said. “I’m worried about losing my job. If my child doesn’t go to school I couldn’t go to my job.”

Mrs McAuley said additional government funding is the only way out of the problem.

“I can’t see how it’s going to carry on with the current level of funding.”

Mrs McAuley said the lengthy waits for getting an autism diagnosis has made some parents leave the area to places where it takes less time.

Parents moving out of York for children to be diagnosed faster

This was the case for Bekki Holmes who moved out of a York to a village near Driffield in 2020.

Her seven-year-old daughter was diagnosed with autism last year.

While in York the married 42-year-old said she tried to seek help from staff at her child’s nursery and pre-school but claimed: “No one would acknowledge it. They said she was naughty and not doing what she was told.”

Her daughter was about to start her first year of primary school, in a class of 30 pupils, when the family decided to move.

“I thought she was going to get lost,” Mrs Holmes said of her daughter starting in that class.

Parents say they have left York to smaller areas so their children can be diagnosed faster (Image: Danny Lawson/PA Wire)

She moved her daughter to a village school in East Yorkshire, into a class with seven pupils.

Mrs Holmes said staff at the school took action to get her daughter diagnosed with autism shortly after she first mentioned it.

“The school have been amazing,” she said. “They have gone above and beyond what a normal school could do.”

Mrs Holmes said her daughter was diagnosed with autism last August and has traits of pathological demand avoidance (PDA) – meaning she struggles to carry out everyday demands.

“The diagnosis was brilliant for us,” she said. “The things we were trying to do would never work with a PDAer kid.”

'Other than the school, we have no support' - parent of autistic child

Although her daughter was diagnosed, Mrs Holmes said she still faces challenges in caring for her.

She said there is “no support out there” after the diagnosis has been made.

“There’s no sign posting. There’s no one there to help guide with that. There’s nothing out there.

“Other than the school, we have no support.”

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Mrs Holmes said she has turned to look for help herself. She joined Facebook groups where parents of children with special needs can offer advice to each other on things they have done that have helped their children.

She also started a Facebook group for parents to share resources to help each other.

“There should be more support,” she said. “It just means that us families are doing all the research ourselves. We’re busy enough looking after our children with complex needs.

“There needs to be a hub of information or something to help with our children. It’s so complex.”

An NHS spokesperson said: "The NHS is fully committed to supporting and improving the lives of those with ADHD and autism which is why we have published new national guidance to help local areas manage the 50 per cent increase in referrals they have seen.

"NHS England has also begun important work into investigating challenges in ADHD service provision and last month launched a cross sector taskforce alongside the government, to help provide a joined-up approach for the growing numbers of people coming forward for support."