A Montreal family says it is ready to pay out of pocket for help from the private sector after recent changes at the Montreal Children's Hospital autism clinic left both parents angry and frustrated.

CBC has learned that the former Autism Spectrum Disorder Program went through internal changes a couple months ago. Staff there insist there should be little impact on patients, but Stuart MacDougall says his family has been left in the lurch.

"I used to assume, especially being Canadian ... that people weren't falling through the cracks that much," MacDougall said. 

"Now I look around and I see a homeless guy with a weird shuffling walk on the street, and I see what is a potential future for my son."

MacDougall's four-year-old son, Colin, was diagnosed with Autism Spectrum Disorder (ASD) two years ago. 

He and his wife say they've had many frustrations with public healthcare, but their latest interaction with the Montreal Children's Hospital was the last straw.

Colin MacDougall

Colin MacDougall, 4, was diagnosed with Autism Spectrum Disorder (ASD) when he was two years old. (CBC)

Anticipated followup visit denied

They've been looking forward to a planned followup appointment at the clinic for a long time. They're uncertain whether the therapy Colin receives every week is effective, and they have questions about his rare genetic condition, something they learned about after his initial evaluation.

When Colin was diagnosed at the Montreal Children's Hospital ASD Program two years ago, the developmental psychologist told his parents to book an appointment when he turned four, for diagnostic purposes and for cognitive testing.

But when Colin's parents tried to do that, they were turned down via voicemail.

"The autism clinic is no longer functioning," the message said. "Now there's a more specialized clinic and therefore policies have changed, procedures as well. So in this case, we'll not be able to proceed with a reassement of your child."

Colin's mom,  Andrea Tritton, tried to call back for an explanation, but has not yet received a response. 

"These are the people who are supposed to be helping us and they're basically just telling us sorry, we don't do that anymore," she said.

Clinic changes name and approach to triage

A spokesperson for the MUHC's Children's Hospital confirmed to CBC that the former Autism Spectrum Disorder Program Clinic went through an internal review a couple months ago.

She said the changes mostly had to do with how patients are triaged, and there were no cuts to staff.

It also has a new name — the Brain Development Behaviour Clinic. 

"This decision was made with patients and families top of mind, to provide as many assessments as possible with as minimal delay as possible," spokesperson Pamela Toman told CBC.

Toman said the hospital would not comment on the specifics of Colin's case, even if his parents signed a waiver of confidentiality.

"We have every intention of contacting the family directly and discussing this matter with them in great detail to answer any questions or concerns they may have about their son's diagnosis, treatment and followup," she said.

"We believe speaking to them directly is the best way forward."

She also added that, generally-speaking, the clinic only reassesses patients if there's doubt about their diagnosis.

"We'd actually be taking away resources and time from families who are on the waitlist for a diagnosis and evaluation."

macdougall family

Stuart MacDougall and Andrea Tritton say they need guidance for their son, but to access that support they feel that they have to seek help in the private sector. (CBC)

If that's the case, then Colin's parents want to know why they were promised a followup in the first place. 

At this point, they say they feel like abandoning the public system, at least in part. They plan to pay for a psychologist in the private sector, so that they can be sure Colin will have routine followups.

​"All I need is every year or two to be able to talk to a developmental psychologist that is following my son's case that can give me some advice on what to do. And I think that's not much to ask for," MacDougall said.

Clarifications

  • After this story was published the hospital reached out to Colin's parents to set up a meeting.
    Aug 11, 2017 3:06 PM ET
With files from Ryan Hicks