Autism registry a 'fantasy' with very little support, says advocacy group
Critics say resources could be put to better use
A group that advocates for people with autism in Newfoundland and Labrador is raising concerns about a volunteer registry launched Thursday in St. John's, saying it feeds into the perception that people with autism are dangerous.
The volunteer group is called Families for Effective Autism Treatment - Newfoundland and Labrador, or FEATNL.
FEATNL describes itself as a grassroots organization free from government influence, linking about 500 people in this province with connections to autism through a Facebook group.
Early on, the group was asked whether it supports the idea of a registry, but quickly rejected the idea, said Tony Howell, a member of the group and father of an adult son and daughter with autism spectrum disorder (ASD).
"Just think about it for a second here. We're being asked to join a registry here because we're afraid our children will run afoul of the law," Howell said during an interview Friday.
He called the registry a "waste of resources" and said he's encountered "very little support" for it.
One-year pilot project
The registry is a partnership between the Autism Society of Newfoundland and Labrador and the Royal Newfoundland Constabulary.
It is a one-year pilot project for the St. John's region, and mirrors similar registries across Canada.
It is being touted by the RNC as another step towards improving the level of service provided to people with ASD and their families, and follows a high-profile confrontation in 2009 in which an officer detained a young man with autism, thinking he was drunk and belligerent.
During the launch on Thursday, supporters said participation rates in similar registries across Canada are high, and hope for a similar uptake in this province.
GPS a better use of resources
Howell feels the autism society and the RNC are being overly optimistic.
He said he's aware of the many needs of people with autism and their families, and said a registry "doesn't even make the list as something we are looking for here."
We feel there are certain issues we don't feel the Autism Society has handled as well as they could- Tony Howell
He suggested that an initiative to secure global positioning devices to people with autism, making it easier to locate them if they go missing, would be a better use of limited resources.
Meanwhile, those who register with the Autism Society must provide an up-to-date photo, personal information, and details such as regular routines, likes and dislikes, and special needs.
The information is then turned over to the RNC in a secure way, allowing officers to access the registry from the mobile computer terminals in their vehicles.
It's envisioned that officers responding to a call involving someone with autism could use the information to help defuse a situation.
But Howell calls this a "fantasy" scenario, and is concerned about how a situation might unfold if police respond to an incident involving someone who does not register.
"In that sense I consider this being worse than nothing here," he told CBC News.
It may seem unusual to see two autism groups so split on an issue, but Howell does not hide the fact there is a split in the autism community.
"We feel there are certain issues we don't feel the Autism Society has handled as well as they could," Howell said.