Watch: Part two of Global National’s Shirlee Engel’s special series on autism
TORONTO – Jennifer Mackintosh has two sons, both diagnosed with autism, but she wishes her older son had received the same early treatment as her younger son.
“With Alex, my older son, we really didn’t understand what we were doing initially and what we were dealing with,” said Mackintosh. “So not only were we later getting a diagnosis, but…he didn’t start in a proper program until he was almost three-and-a-half.”
Nathan, three years younger, had a full program set up just two weeks after his diagnosis at 21 months, while Alex’s Ontario doctor told Mackintosh he would be on a waitlist for two to two-and-a-half years for a government-funded program.
Instead, with the help of family members, Mackintosh paid $37,000 a year for private care for her older son. She believes Alex, now 9, was always going to have more challenges than Nathan, but thinks early intervention could have helped.
“Alex is in a segregated program, he has continuing communication and social problems…whereas Nathan is in a regular kindergarten class and does very well with children his own age,” she said. “He needs some help managing transitions, but we understand a lot better and are able to move forward a lot faster, and that—I think—made a huge difference in how Nathan has progressed.”
Recent studies suggest signs of autism could start as early as 12 to 18 months, and Mackintosh urges other parents to push for an assessment from their family doctor if they suspect anything out of the ordinary.
“We can actually change the way their brain is developing and that increases the likelihood that they’ll get onto a developmental trajectory that is more typical,” said doctor at Emerging Minds autism treatment centre Yolanda Korneluk.
VIDEO: Extended interview with Jennifer Mackintosh, mother of two autistic sons
Peter Szatmari, a Toronto doctor who researches autism spectrum disorder (ASD), believes early child care programs can make a difference in social interaction, but cautions on putting “all our eggs in one basket.”
“I think we’ve got to really be more flexible and think of this as a whole suite of interventions from the point parents get concerned, all the way into adulthood,” he said.
Mackintosh now runs a website for parents of newly-diagnosed children (or parents who suspect their child is autistic) offering suggestions on how to help your child communicate, how to deal with problem behaviour and emotional reactions parents might experience after a diagnosis.
She believes the number of autistic children keeps growing, and the system hasn’t expanded to keep up with the demand for programs.
“There are a lot of families out there still struggling, and there’s not a lot of support out there for them.”
With files from Bryan Mullan