For William and Clare Whiteley, the six-week school holiday can be a nightmare.
“There’s none of the structure or routine of the school week,” says Clare. “Routine is a massive issue for Joseph. He gets distressed without it.”
Clare’s son, Joseph Midwood, was nine when he was diagnosed autistic. Born visually-impaired, with mild cerebral palsy, he is now 14 and discovering the physical and emotional challenges that come with adolescence.
Thanks to Cygnet – a Barnardo’s-run programme for parents and other carers of autistic children aged seven to 18 – Clare and William, Joseph’s stepfather, are learning how to meet the youngster’s changing needs, and help him cope with a new phase in his life.
Developed with input from parents, the programme started in Bradford and was originally commissioned to run three groups locally. Now, from its Bradford base, Cygnet is running in 102 organisations nationally.
Aimed at helping parents and carers develop their understanding of autism and solutions to managing behaviour, the programme is delivered over six sessions covering autism and diagnosis, communication, sensory issues, and understanding and dealing with behaviour.
Additional sessions focusing on siblings, and on puberty and sexuality, are being launched.
Cygnet has enabled William and Clare to send Joseph to a mainstream school – he’s studying for GCSEs at Immanuel College in Thackley. “We understand what he’s going through. We can help him cope with school,” says William. “Cygnet has given us the tools to to step back and examine Joseph’s behaviour. It helps us understand why he gets distressed by some things, and what the trigger points are.
“Even getting on a bus can trigger a reaction. Joseph gets stressed by all the noise – the engine, people, mobile phones – which affects his concentration. We now understand more about his sensory issues.”
While being the parent of any teenager is demanding, an autistic teenager brings a new set of challenges.
“Joseph has become aware of his changing body. We’re trying to help him with the transition,” says Clare, of Bolton Junction. “He takes everything literally, so when it came to his first shave, we couldn’t use the words, ‘shaving your face’, because to Joseph that would mean shaving his whole face – eyebrows and everything. William stands behind him while he’s shaving so he can see him in the mirror.”
Donna Jordan is going through similar experiences with her son Ben, 17. “He uses an electric shaver then I give him a wet shave,” she says.
Donna, of Swain House, always knew there was something different about Ben, who was diagnosed with Asperger’s Syndrome at 15.
“As a baby he never cried or smiled, and wouldn’t let me cuddle him to sleep,” she says. “He played with the same toy and ate the same food. If anyone went near his plate he’d push them away. I knew something wasn’t right.”
Donna discovered Cygnet through the Bradford And District Austism Support Group. “It’s good to share experiences with others who know what you’re going through,” she says. “I have three older children who don’t have autism, so with Ben I didn’t know what to do. I was fighting it, and felt isolated.
“Now I understand more about Ben’s condition. I know why he behaves like he does and I’m better at coping. I thought I was heading for a nervous breakdown – Cygnet came at the right time.”
Glenys Shinkins, of Wyke, is the grandmother of Luke, 15, who was diagnosed with Asperger’s 18 months ago. “I used to put everything down to bad behaviour, but after my first Cygnet session I started to see it differently,” says Glenys.
For more about Cygnet, ring (01274) 481183 or visit workingfamilies.org.uk. An autism information event for parents, carers and practitioners is at Victoria Hall, Saltaire, on Wednesday, September 14, from 10am to 2pm.
* Full feature in today's T&A.