'We weren't able to cope' - parents praise life-changing support for autistic son in Cornwall

  • Watch Kathy Wardle's report

Two parents who were struggling to cope with their son outside of their home have praised a team in Cornwall for giving them life-changing support.

Jannine and Toby Clemence's seven-year-old son Noah is being assessed for a rare type of autism called Pathological Demand Avoidance - or PDA.

PDA may mean a child goes to extremes to resist or ignore anything they perceive as a demand, often making daily tasks challenging.

For Jannine and Toby, their situation was made even more complicated by the fact they are both deaf.

"We couldn't call people to ask for advice, we couldn't use the telephone," Jannine told ITV News.

"We had to think of different ways of communicating with the school. They were fantastic, I must say, about that - but we felt like we didn't have enough support around us."

She said the family faced a lot of problems, particularly with Noah going to school.

"His attendance was extremely poor, he would be so disregulated and have breakdowns or meltdowns every morning," Jannine said.

"He really struggled with change of routine, struggled with eye contact and communication, there were many things that we were struggling with."

Noah is being assessed for a rare type of autism called Pathological Demand Avoidance - or PDA.

But the family have now had help from a Cornwall Council scheme that supports families with disabled children.

The Supporting Change in Partnership - or SCIP - team was developed in 2016 and has now helped more than 1,000 youngsters.

It was set up following consultation with parents and carers about a different way of providing support rather than a social work assessment.

For Jannine and Toby, it's been transformational.

Jannine says: "We weren't able to cope with Noah outside of the house, but our lives have completely changed. Before we started working with SCIP, I felt embarrassed because we didn't understand Noah's disability at that time.

"We didn't understand about autism properly and we're still learning to this day, but I shouldn't have been embarrassed, and that's what I'd say to other parents - don't be embarrassed, ask for support."

Cornwall Council says the SCIP scheme has led to a significant reduction in social work caseloads, freeing up social workers to focus on statutory social work.

Disabled children’s early help team manager Crin Whelan said: “It’s a huge achievement for the team that we have now helped more than 1,000 children across Cornwall and I’d like to pay tribute to the dedication and hard work of the support workers and the families they support.

“SCIP is all about early intervention and understanding the views and wishes of children, young people and their families to improve their lives.

“It is clear that the service is now making a real difference to disabled children and their families in Cornwall, giving young people a brighter future and a greater chance of independence. We are now sharing the approach with other local authorities.”

SCIP started out with three support workers but now has nine who help families across Cornwall.

The team says positive outcomes for children it has helped include; a young person who had not come out of his bedroom for two years that has been shopping for new shoes, and a child who had not attended any form of education who is now attending full time school and thriving.

SCIP is part of the council’s Disabled Children & Therapy Service (DCTS) which is made up of teams who support disabled children, young people and their families.