Autism Calgary says thousands are missing out on key supports

Autism Calgary’s executive director says despite having over 2,000 members, thousands more are missing out on getting potential services and supports.

“We estimate there’s probably 6,000 to 10,000 families caring for a loved one with autism in Calgary,” Lyndon Parakin said Monday at Calgary’s 5th World Autism Awareness Day Event. “Not everybody gets to the resources and services they need in a timely manner.”

According to new research from the Public Health Agency of Canada, an estimated one in every 66 Canadian children and youth aged five to 17 have autism spectrum disorder.

While that doesn’t include data from Alberta and several other provinces, the agency does consider the report representative based on around 40 per cent of the age demographic being cited.

There is some local research to consider as well, as several years ago the University of Calgary School of Public Policy reported one in 94 school-aged children were diagnosed with autism spectrum disorder.

Those are two of the studies Parakin points to and as the city’s primary network of families who have members with autism, he hopes more parents will reach out for the supports that are waiting for them.

“They don’t have to feel alone, and there’s something so empowering to come and feel the support and warmth of other people and sometimes to contribute and give back,” he said.

Executive Director of the Autism Aspergers Friendship Society, Dean Svoboda, agrees there’s likely a wide gap of potential members for his group as well.

“There’s a lot that falls in and around the edge of that autism spectrum, and it’s expanding,” he said. “I think it’s definitely a lot of families out there, and typically we’ve found families that have trouble finding the access, and the diagnosis are the ones that really need it the most.”

Fortunately, he said when families do reach out, the impact can is substantial.

“Even hearing from a family six months after the fact saying me and my husband went out for dinner, it’s such a huge outcome for them, or we brought our son to a family reunion,” he said. “Those are the things we see that are so incredible.”

Svoboda echoed Parakin’s message about families not being alone and said sometimes simple conversations between families can have a big difference.

Autism Calgary runs family support groups, while facilitating peer and professional support, while AAFS focuses on developing social programs from parkour and martial arts to ball hockey and camping.

Like many non-profits, however, both have been affected coming out of the economic downturn.

“It’s not impacted our community spirit, but staffing resources are lower, we are feeling it,” Parakin said, citing more competition for grants. “We’re a skeleton crew of part-time staff and some committed volunteers.”

Svoboda added his group of 800 families never had corporate sponsorship to begin with since starting in 2004 and while there are certainly financial challenges, it’s hard to believe it’s now running programming in Airdrie, Edmonton and other parts of the country.