Britain launches social clubs for children, teens with Asperger's

From The Guardian in the UK:

Raising four young children would prove challenging for many parents. But for Tracy and Doug Turner, the role is particularly demanding, as three of their children, aged between 4 and 11, have an autistic spectrum disorder.

Charlie, 9, and Emily, 10, have Asperger's syndrome syndrome, a form of autism that can cause difficulties with social communication and interaction. William, 11, has a more severe form of autism and attends a special school.

Both Charlie and Emily have what their parents refer to as "high-functioning" autism. Like many children with Asperger's syndrome, they don't look any different from their peers and often appear mature and articulate, but they find it difficult to interact with others. Their behaviour is perceived as "unusual" by other children, which means children with Asperger's syndrome can easily become isolated.

Charlie and Emily are in mainstream education, but find it difficult to it fit in. "Just because a child is at the 'milder' end of the autistic spectrum, doesn't mean the issues are mild," says Tracy Turner. "William is quite unaware he has no friends, so it doesn't bother him. But Emily knows she hasn't got any friends, so it's harder. I can't remember the last time Emily was invited to a party or to play at a friend's house."

Finding suitable out-of-school activities for children with Asperger's syndrome can be a challenge. Fortunately, the Turners are based in the south-west, where a network of out-of-school clubs, run by the National Autistic Society (NAS), provide vital support for children and young people with autism, and their families.

Launched in early 2006, with the help of Big Lottery funding, there are nine clubs for 8- to 18-year-olds currently running in different locations across the south-west. Typically, the after-school clubs are held weekly for up to three hours, with separate sessions for the 7-12 and 13-18 age-groups. Clubs are run by a team of staff volunteers, trained to work with autistic children, and parents are asked for a voluntary contribution of just £1 towards the cost of refreshments.

Activities, which include crafts, cookery, cinema trips and meals out, are aimed at helping children and young people understand their disorder and how it affects their interactions with others.

"Autism can be an invisible disability so children with autism don't always have their needs met," says Emily Wiseman, project co-ordinator for the Bath and Bristol groups. "Children with high-functioning autism often appear intelligent and articulate, says Emily Wiseman, project co-ordinator for the Bath and Bristol groups, but they often aren't able to access mainstream out-of-school clubs and activities. There's very little out there for them."

Turner agrees: "Charlie tried Cubs for a while, but couldn't cope with the lack of structure and found the other boys too boisterous," she says "Emily is trying the Girl Guides at the moment, but says no one plays with her there. She's trying really hard, but I wonder how long she'll last."

People with Asperger's syndrome syndrome often find it harder to read the signals many of us taken for granted, such as facial expressions, tone of voice and body language, which can lead to anxiety and confusion. Sensory difficulties are also common and children with Asperger's syndrome can be particularly sensitive to bright lights, overpowering smells or the feel of particular materials.

Lorna Watson's 11-year-old son Harry (pictured) has been attending the Bristol club for three years, something she believes has helped him become more independent. With around 10 children in the group, Harry, who also has cystic fibrosis, has also benefited from being able to work at his own pace, which is often difficult at school. Watson says: "It's quite common for children with Asperger's syndrome to have problems with co-ordination, but there's a pool table and table tennis at the club. Because he's not under any pressure, his co-ordination has improved noticeably."

For Turner, what is most valuable for the children who attend is the chance to feel "normal": "They think 'Wow! Someone wants to sit next to me, someone wants to play with me.' ... It's such a boost," says Turner.

Parents also value the chance to feel "normal" and to talk through their experiences with those in similar circumstances. "When you're out and the children are upset about something, sometimes you just want to curl up and die," says Turner. "Charlie has a fear of balloons. We only have to walk past a shop with balloons in the window and he gets upset. He is also very affected by strong smells, such as Marmite and tomato sauce. If they served up tomato sauce in a restaurant he'd be so distressed we'd probably have to leave. People look you as though it's your fault, as if you're parenting is flawed."

Watson agrees, adding: "When we're out in public, strangers are always commenting. They are so forthcoming with advice. They think everything can be solved with a bit of firm discipline. You just get tired of explaining."

As well as peer support, the club offers parents or other family members some respite. When Harry is at out-of-school club, his twin brother Gregory looks forward to snatching a bit of "chill out" time with his dad.

Turner looks forward to taking her children to out-of-school club, saying it is the only point in the week when she gets "guaranteed adult time". "On a bad day, my older children are as needy as my four-year-old. It can get very exhausting."

Since the Big Lottery funding finished in January the NAS has been trying to secure funding from local authorities to allow the service to continue. While short-term funding has been secured for most of the clubs, boosted by almost £10,000 of public donations, the future remains uncertain. But with a waiting list of 143, there is clearly a need for the provision.

"Often mainstream clubs are just not equipped to cope with their needs and staff have little, if any, knowledge of autism," says Mark Lever, NAS chief executive."That's why our clubs are so important. They provide a safe haven where young people can be accepted for who they are and have the opportunity to form friendships and learn social skills in a supported and safe environment. We believe young people with autism deserve the same access to social activities and leisure opportunities as their peers."