Arundel summit spotlight on ‘invisible’ disability

PARENTS of children with autism have called for closer working between health, education, social services and other agencies in West Sussex, to provide better care for their youngsters.

The plea came at the end of an “autism summit” hosted by Arundel and South Downs MP Nick Herbert on Friday, following concerns raised by constituents with autistic children, over the difficulties they experienced.

Senior figures from the NHS, county council and voluntary organisations supporting autistic children discussed the issues with parents during the three-hour forum at Arundel Town Hall.

Sign up to our daily SussexWorld Today newsletter

It ended with a call for a new partnership board to be set up specifically to bring together all the agencies, to foster closing working relationships and to draw up more effective policies and practices in future.

Lindsey Butterfield, from Worthing, whose 12-year-old son Jordan has Asperger syndrome, was among the parents speaking out. She said she and other parents faced a “continuous” battle over their children’s needs .

“It’s very frustrating. You have to fight for everything your child needs.”

Now settled into a special unit for children with autism at The Littlehampton Academy, Jordan went through five schools by the age of seven, in what Lindsey described as “an awful start” to his education.

“The schools didn’t have the resources to provide the support he needed.

“It affected his self-esteem and confidence. It’s all down to the training, awareness and understanding of the staff.”

Autism, she added, was an “invisible disability”.

“Jordan comes across as a very able child. People assume he is just being naughty because of his behaviour, and you feel you are constantly being judged by people for your parenting skills.”

Mr Herbert said he had had many constituency cases over the past few years involving families with autistic children.

“I began to realise there is a real issue here, over the way that services are provided and the need to join them up and have earlier assessments, so that this condition is picked up sooner and the need for more information and support for parents is recognised.

“What is encouraging is that a lot is now being done. The Government published a Green Paper last year about how the services should be improved.

“West Sussex County Council is one of the areas involved in the Pathfinder approach so that services will be joined up and will focus on the needs of children.”

Parents attending the summit were critical of funding cuts by the county council and feared these would have a worsening impact on their children, but Mr Herbert said he would rather applaud the council for its involvement in the Pathfinder scheme, than attack its spending decisions.

“Let’s be honest, we are all being affected by cuts. The money has run out and we have to deal with that fact.

“If you find ways to assess children earlier and tailor the services for them better, and pool the resources more efficiently, there are smarter ways to spend the money.”