Autism wait lists called untenable

Parents of children diagnosed with autism spectrum disorders say services available are failing to keep up with a mounting demand.

Government says new services being added; advocates say it's not nearly enough

Parents of children diagnosed with autism spectrum disorders say services available are failing to keep up with a mounting demand, and that government needs to step up its efforts to recruit therapists.

"We really need some new services. We really need to do something about this now," said Jamie Ryan, a St. John's mother whose son Christopher is highly autistic and whose daughter Brooklyn has Asperger’s syndrome, a condition on the lower end of the spectrum.

Ed Knox said recent announcements of spending on autism services have not affected his son's wait list. (CBC )

While both of Ryan's children waited for more than a year to be diagnosed, Ryan said wait times for treatment are just as serious.

"I know Christopher's occupational therapist has 76 clients right now," she said in an interview.

"How can one person really, fully, effectively treat 76 patients plus what's on the wait list right now? It's not possible. It's just not possible."

Eastern Health says an autistic child waits on average about two years to see an occupational therapist.

Health Minister Susan Sullivan said wait times are an important issue that the government is working hard to reduce.

"What we're doing in terms of providing service for children and adults with autism is that we've been working really hard on recruitment. We've been working really hard on putting additional financial and human resources in place," Sullivan said.

Services also often vary significantly from what is available at home and what is offered at school.

In-school services found lacking

Ed Knox, whose eight-year-old son Jake was diagnosed with autism when he was three, said while Eastern Health provides a home therapist, Jake does not have access to therapy at school.

Jamie Ryan flew her highly autistic son to Florida for treatment. CBC

As his son gets older, Knox said the lack of in-school intervention can have large implications.

"Time is of the essence and I think this is something we really have to stress to our government officials that we don't want to wait," said Knox, who chairs the Autism Society of Newfoundland and Labrador.

"We have the resources. I mean we have the money. We are a have province right now."

Knox said he thinks highly of teachers and staff at Jake's school, "but again they do not have the resources to provide my son with what he needs to have."

Jake had access to an occupational therapist until Grade 1, and is currently on a wait list.

Education Minister Clyde Jackman said the government has spent more than $1 million over the last three years, and recognizes there is a need for more.

"We've certainly moved in the direction of providing support for children with special needs. Will there be ways that we can improve upon it? Certainly," he said.

Linking health and education services

Knox said public services must be better co-ordinated.

"Our health and community services and our education system, they have to be bridged. There is such a gap now between the two," he said.

For Jamie Ryan, changes cannot come quickly enough. Unable to obtain services for her son at home, she paid out of pocket to take Christopher to Florida for treatment.

"It's unbelievable, and it's just when you come home and you still have to consult with people, not only out of the province, but out of the country," she said.

"It kind of breaks your heart because all those services are there, they just don't have enough positions to keep everybody happy."  

With files from Robyn Miller