Imagine you are vacationing in a foreign country, and are invited to a party. You don't speak the language, or understand the customs of the guests, and they don't know yours. Everyone else is enjoying themselves, chatting easily with each other. You feel anxious and unsure of how to interact with people. You feel isolated and left out. Now, just try to make some friends.
This is what everyday life can be like for someone who has autism. Autism or Autism Spectrum Disorder (ASD) is a lifelong developmental disorder characterized by problems in social development, communication and behaviour. The specific symptoms may vary widely from one individual to another, but there are common characteristics of ASD. Because ASD is primarily a social communication disorder, some people with autism can appear to be disinterested in other people. Some adults and children might not know how to talk to, play with or relate to others and initiating and maintaining a conversation can be difficult. Repeating behaviours (such as rocking) and restricted interests are also common. Speech and language skills can develop slowly, or in some cases, never develop. The Autism Society Canada estimates that without intensive early intervention about 40 per cent of children with ASD do not talk at all.
Given these challenges, making friends and interacting with others socially can be extremely difficult for people with this disorder. The Provincial Autism Centre of Nova Scotia and Dalhousie's School of Occupational Therapy are partnering to develop Autism Online, a web-based community aimed at teenagers with autism across the province.
Michael Price, program director for the Provincial Autism Centre, says that the online community is an extension of a successful project the Centre created last year where they host social gatherings for people with ASD. "We have people coming to Halifax from as far away as the Valley and the South Shore to participate in these physical social groups, and it's been a great way to allow people with autism to have more control over their lives," he says. "We hope to extend that program by creating a virtual community, so that people in rural areas who don't have easy access to the centre's resources and in-person social events can still get involved, access resources and develop a social network."
Reg Urbanowski, Associate Professor, School of Occupational Therapy, sits on the Program Committee for the Autism Centre. He says that Dal's contribution involves donating space on the WebCT (Dalhousie's learning content management system) — a protected site where the pilot project can be set up. Reg and students in his Program Design and Evaluation class were involved in the development of a proposal to launch the project. Reg will also be involved in the development of a moderator training program and will lead an evaluation of the pilot project next fall in his Program Design and Evaluation class.
The new site means social programs will expand across the province, giving people with autism an opportunity to make new friends in their area and form relationships with people who have shared interests. "With autism being a social communication disorder, it's more challenging for people with autism to forge new friendships," says Michael. "My guess is that a lot of the issues teenagers in particular face will be typical experiences. We're hoping the website can help to mitigate feelings of fear and loneliness."
The Centre is piloting the project as a teen program for now, but exploring other opportunities the site can provide, such as a forum for parents or possibly an international exchange.
"The primary benefit will be that people will be able to communicate with whatever capacities they have in a safe, moderator-supervised environment," says Reg. "If people can form positive social relationships, and have access to reliable information, they can increase the meaningfulness of the things they do in their daily lives by sharing with others." In other words, they may finally be able to join the party.
For more information about the website in development, please contact the Provincial Autism Centre at www.autismcentre.ns.ca or toll-free at 1.877.544.4495.
With research by Marla Cranston. Information taken from the Autism Society Canada and the Autism Society of Nova Scotia.