N.L. autism society says registry numbers will remain secret

It's now been almost a week since the volunteer registry for people with autism in this province was officially launched, but it's unlikely we'll ever know how many families sign up.

Confidentiality one of the selling points of volunteer registry, says executive director Scott Crocker

A new registry for people with autism was announced in St. John's recently. Among those taking part in the announcement were, from left, Elaine Dobbin, patron and honorary board member of the Autism Society of Newfoundland and Labrador, RNC Chief William Janes, autism society president John Barry, and RNC Insp. Barry Constantine. (Terry Roberts/CBC)

It's now been almost a week since the volunteer registry for people with autism in this province was officially launched, but it's unlikely we will ever know how many families sign up.

Scott Crocker, executive director with the Autism Society of Newfoundland and Labrador, said it was decided early on during the planning process that participation levels will remain a deeply-guarded secret.

That's because of concerns about privacy and further stigmatizing those with autism, he said.

"We have had overwhelming support for the voluntary autism registry," said Crocker. 

"I suspect much of the reason is its purpose, the confidentiality surrounding it, and the fact that it is voluntary."

Crocker said three senior employees with the autism society will handle the registry file, and only police officers with the need to use the database will have access.

"Let me just say that things are progressing as we expected and I am pleased," Crocker added.

A unique partnership

The registry became active on the autism society's website on May 11.

It is a partnership between the society and the Royal Newfoundland Constabulary.

The registry will include personal information, including a photo, and details such as a person's likes and dislikes, favourites destinations, special needs, and much more.

The idea is for officers to be able to quickly access the database during an encounter with a person with autism, in hopes it can be used to help avoid a confrontation similar to a high-profile incident in 2009.

In that incident, a young man with autism was arrested and charged with obstruction of justice.

The RNC later apologized for the misunderstanding.

The registry is a pilot project for the St. John's region.

It's believed there are roughly 2,000 children and school-aged children in this province with autism spectrum disorder, and a similar number of adults.

Crocker expects the registry will appeal mostly to those with higher needs.

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