Long waits for autism diagnosis leave B.C. families without support funding

Ashley Seltenrich's four-year-old son, Xander, is non-verbal. He lacks fine motor skills, has sensory issues and is prone to meltdowns, she says.

Although she been told repeatedly that he has autism, Seltenrich has been waiting more than two years to get an assessment through the Provincial Health Services Authority program.

It's only with an assessment that one can get an autism diagnosis, and armed with a diagnosis, families can access thousands of dollars in support funding each year.

Seltenrich began the process to get Xander diagnosed about two and a half years ago, but every time she checks on the status, she's told it will be several months longer.

"It's really frustrating, and I also get pretty mad sometimes," said Seltenrich, who lives in Dawson Creek, B.C. 

"But I also get pretty upset and very emotional, because I want the best for my child."

More trained clinicians needed to address backlog

Her struggle is consistent with that of other families across the province stuck waiting for a diagnosis so they can access support for their children.

Advocates calling for more autism assessment resources say wait times are only getting longer.

According to the B.C. Autism Assessment Network, the current wait time for an assessment is about 74 weeks — nearly a year and a half — but it varies throughout the province.

Last year, the wait time was 60 weeks and two years ago it was 55 weeks, according to Tracy Humphreys, chair and founder of the BCEdAccess Society.

"I'm not sure what the struggle is, but we need to fix that," Humphreys said. "It means [families are] waiting for funding."

For children under six years old, Humphreys says families can get about $22,000 per year in support funding — which can disappear quickly in costs associated with equipment, support workers, occupational therapists and other needs.

Families with children age six and over get about $6,000 in funding each year, but it all hinges on the diagnosis, Humphreys said.

"It puts families in a position where their child doesn't get the early intervention that they need," she said of families waiting for their children to be assessed.

Early intervention can help improve overall development for children with autism, helping them gain essential social skills and react better in society.

According to Humphreys, the reason wait times are so long is simply because assessors' schedules are full. More trained clinicians would be required to address the backlog, she said. 

Seltenrich said she's been paying about $10,000 out of pocket each year in costs associated with her son's health and development, but Xander still appears to be falling behind other children with autism.

She's worried what will happen when he's supposed to start school next year.

"If I put my child in public school, and I don't have a diagnosis, my son won't be able to go to school," she said, adding that he's a flight risk and might run away from class.

Ministry calls access to intervention a priority

Creating better access to intervention services is a priority, a spokesperson for the Ministry of Children and Family Development told CBC News in a written statement.

"The ministry continues to review options to reduce barriers for children to receive intervention services," the statement read.

The spokesperson said the ministry has begun to accept virtual assessments during the pandemic for children under three and a half years old and for youth aged 15 to 19. It says it is looking at what other steps  can be taken. 

For Seltenrich and other parents still waiting, there's the option of a private assessment, but it can be prohibitively expensive.

It would cost around $2,500 to $3,000 for the private assessment, plus 16 hours of travel to Vancouver, Seltenrich said — a considerable cost for the family. 

But she said she's eager to begin with the intervention as early as possible so Xander can reach his potential.

"We're on our own," she said.

"Like we've been left on a boat with no paddle."

Do you have more to add to this story? Email rafferty.baker@cbc.ca

Follow Rafferty Baker on Twitter: @raffertybaker