Parents challenging ‘a lack of autism support’

The chairman of Autism Support Allerdale and Copeland, Shirley Murphy, has a son with autism and has experienced first-hand the lack of support for parents like herself.

Her son Daniel is blind and autistic and although now an adult still needs support. Shirley set up the charity knowing how difficult it can be to support a child with autism.

“We work on a cradle-to-grave basis. Once you reach 25, it’s like you’re cured – my son isn’t cured he’s still going to need that support.”

She added that it is a widespread issue for parents to go through.

“On our social media, we’ve got over 7,000 parents and carers.”

Councillor Mike Hawkins is a supporter of the charity.

Shirley said: “He is the autism champion for Copeland – we don’t have one for Allerdale.”

But she believes it is an issue up and down the country.

“I went to a conference in Blackpool. There was a lady on who asked, ‘has anyone heard of the Fu-Fu effect? F-off and Find-out’.”

Geoffrey Graham of Salterbeck, Workington, believes it has been a problem for years as his now grown-up son Michael never got the support he needed.

“We took him to several secondary schools” he said. “He liked the one in Cockermouth because it had a set-up that gave them home skills.”

A unit was attached to the school that had a bathroom and kitchen, teaching autistic students life skills like cooking and cleaning in a mock home.

But Mr Graham said: “They said we were out of the area because we live in Workington.”

He added that a friend’s son attended whilst living in Whitehaven.

Michael had to go to Stainburn School but Mr Graham believes his special educational needs led him to be bullied in the mainstream environment.

Ruth Ramsay of Cleator Moor has kick-started a campaign to raise awareness of children left without a place in SEN schools. Her severely autistic son, three-year-old Dylan was initially told there was no place for him at his local specialist school Mayfield and he was faced with attending an unsuitable mainstream school.

However after Ruth’s online campaign, Cumbria County Council increased funding to Mayfield School and Dylan, as well as nine other children, were given a place.

She believes the Government is not granting enough money to the county council to fund specialist schools.

She said: “People from all over the county are having problems with lack of funding. It isn’t just the issue of reception kids not getting places, some have older children that are not coping or have left mainstream and can’t get into the autism academy because it only has 64 places.

“It is a massive problem which is only going to get worse as autism is on the rise.”

The charity Ambitious About Autism revealed in 2019 that families face a long wait for a diagnosis, with 49% of the 4,000 parents polled saying they waited 18 months or longer for a formal diagnosis.

One in five said it took between 12 and 17 months. Around seven in 10 said that they did not feel fully supported after the diagnosis.

The chair of Cumbria County Council Christine Bowditch, who is also the autism champion for Carlisle, said: “I have a son who is on the autism spectrum, Andrew, 30. He’s my biggest motivator.

“Autism is a big spectrum and in my role I’ve seen the whole range and people with the most severe autism.”

Coun Bowditch would like to see a change in attitudes towards autism in the workplace: “The thing that needs to change, and it is changing, is people’s understanding of being autistic. We really need people to understand that being different is okay.”

“A lot of autistic people can succeed in employment as long as there is understanding.”

She wants to see mainstream schools get the funding to support children with autism, rather than have a divide between mainstream and specialist education. “It would be wonderful but it’s got to be properly funded. In a mainstream school, with severely challenging behaviour, it might mean they spend a lot of time isolated.”