Spinning her two-year-old son in her arms, Jackie Vuilleumier looked into his eyes and smiled as he laughed.
As quickly as her smile had appeared on her face, it disappeared.
She began to track the movement of her son’s eyes, turning him in a circle to see where his gaze would land. When she turned him to the left, his blue eyes would look to the right, focusing on where he had been, rather than where he was going.
For some mothers, this action would seem odd but may not raise any concern. But for Vuilleumier, who had worked with an autistic child after emigrating from South Africa, this action was a form of stimming (self-stimulation) – an indicator of autism.
“I remember I wanted to vomit. I just felt so sick,” Vuilleumier recalled. “I knew when he did that, what that meant based on my experience. Stimming is such a clear and definite sign of autism.”
Further indicators – such as Jason not speaking and other occurrences of stimming – had the South Surrey mom rushing her then two-year-old son to the doctor last September.
Initially, the doctor was unwilling to diagnose Jason with autism, suggesting it could be a hearing issue. Vuilleumier was referred to a speech pathologist, who noted that Jason did in fact demonstrate 12 of 18 markers for autism.
Despite the speech pathologist’s findings, Vuilleumier’s husband, David Nunn, still refused to believe his son had the neural-development disorder due to his experience with his nephew, who was a low-functioning teen with autism.
“I thought Jackie was crazy the whole time. I thought of my nephew, then of Jason, and I just said, ‘no way,’” Nunn said. “I didn’t realize that autism is a spectrum, with low-functioning kids and high-functioning.”
“They’re like snowflakes, no two children have the same symptoms,” Vuilleumier added.
After returning to the doctor with the speech pathologist’s findings, Vuilleumier was given the referral to see a child psychologist. However, upon inquiring at Sunnyside Hospital – a publicly funded hospital focusing on children with autism – she was informed the waiting list to receive an official diagnosis would be 24 months.
“That’s two years of key time to start treatment – gone,” Nunn said. “Those first two years are absolutely crucial.”
Throughout the process, Vuilleumier had been attending an applied behavioural analysis (ABA) support group for help navigating the system and coping with the obstacles that came with receiving a diagnosis. The province-wide network aims to connect families going through similar situations while offering education on ABA treatment – which has been documented as being an effective treatment for children with autism.
Slowly, she became more and more connected with the members in the group, who were all going through similar situations.
“You go to the meetings and you get involved. How could you not?” she said.
After explaining the lengthy wait time she had been given for Jason to see a doctor, she was offered help by a member.
“She had a friend of a friend of a friend who knew someone at Able Clinic who was able to get us in within days, not months, not weeks, but days,” Nunn said.
The privately funded clinic quickly confirmed Vuilleumier’s fears.
“That’s when you come apart as a parent. Because you’ve been fighting and fighting for a diagnosis, then you’ve got it, now you can relax and then you can fall apart. Cry for a few days, suck it up and carry on,” she said.
Immediately, the family came together to find a team to work with Jason and began treatment using ABA. While optimistic and excited with Jason’s progress in the last year, both Vuilleumier and Nunn admitted that Jason – now 3½ – is still too young to determine exactly where on the spectrum he lands.
However, both are adamant about one thing: the system needs to change for parents who require a diagnosis through the public health-care system.
Following their agonizing experience to simply get Jason diagnosed – before treatment could even start – they began to wonder about those who are unable to give up on the public route.
“The fact of the matter is, the kids who are able to get the help they need are the children of affluent, well-educated white parents,” Nunn said. “What infuriates us is that the fact is a lot of people can’t afford, for the sake of their child, to wait two years for a diagnosis, and they’re cut off from the private route because the average cost to get a diagnosis is approximately $3,000.
“There are a lot of young families who have an autistic child, and all they can do is wait for two years. And in the meantime, the child loses crucial time when they should be getting therapy.”
Making matters worse, is that a child who requires special attention at school will not be assigned a support worker without a diagnosis, Vuilleumier noted. As a result, one parent will often stay at home with the child instead of working.
With members of the ABA network, the two have begun finding ways to bring support to parents beginning their journey to a diagnosis.
Vuilleumier recently hosted a fundraising dinner prepared by chef Karen Barnaby and sous chef Wanda Chau – who volunteered their time for the cause – for the ABA network, bringing in more than $1,000 for the support group.
“The people who helped me get in to receive a diagnosis for Jason were just a bunch of moms, and it was very grassroots, but what they did was amazing,” she said, noting recently the group banded together to raise funds for a child to see a doctor at Able Clinic. “He was diagnosed as being on the spectrum, so now he will be getting the help he needs.”
“I feel like I have to help, because I was helped. People came to our rescue, so now we want to pay it forward.”
For more on ABA groups, visit www.abasupportnetwork.com
