Moncton Company Is a One-Stop Shop for Information on Autism
MONCTON – Selma Zaiane-Ghalia’s son was diagnosed with autism shortly after they immigrated to Moncton from Tunisia. It was an even greater struggle because she had no easy-access to resources to navigate this new reality.
That inspired her to launch a website, which provided the base idea for AutismConnectCanada, a company owned by Paulette Dionne. The company offers a subscription-based web portal that provides comprehensive information to parents with children that struggle like Zaiane-Ghalia did.
“I try not to go back on this [diagnoses period] so many times because it’s not something positive for me to remember, but I built on that to try to help other parents [avoid] going through the same hard time I had,” Zaiane-Ghalia says. “I said if I can help families stay strong and stay together, maybe this is what I have to do in this life.”
With the help of engineer Mehdi Ben Ammar, Zaiane-Ghalia started a website in 2013 collecting movies, scientific papers, documentaries, blogs, articles on alternative treatments and books aimed at helping families living with autism. It received a positive response from parents and caregivers.
“I began this project because I met many many parents who were lost too. They didn’t know where to go, what services to ask for. So I said, ‘Okay. I’m a researcher. I’m going to find a tool’,” she says.
But taking care of her two children, teaching, conducting research and looking for resources for the site took a toll on the professor of inclusive leisure at Universite de Moncton. Then she was diagnosed with cancer in 2015. Zaiane-Ghalia decided to hand the project over to Dionne, whom she met through Ben Ammar, in 2016 and serve as a volunteer consultant instead.
“I want to start something that will be able to be self-sufficient by itself, and continually be kept up to date and not be running after funding,” says Dionne.
Ben Ammar built the software that can automatically sort through 20,000 articles and resources in French and English each day.
AutismConnectCanada.ca went live on Jan. 3 this year with a free website, a subscription-based information portal and bi-weekly newsletters.
Dionne goes through the resources chosen by the software to ensure only the most relevant ones go on the website.
“It provides those who live with autism and those who are affected by autism with a source of information for organizations, services and leisure events,” she said.
“We want to make sure that whatever we’re pushing to the portal inspires, educates, can be helpful, can give people different ideas.”
Everyone can sign up for free until April, when Dionne, the sole owner of the company, will begin charging $3.95 a month. So far, she has nearly 100 subscribers and more users.
“I see it as a potential working tool for teachers, for social workers, and for parents,” she said.
Dionne is now working to get the school districts and various government departments to approve the platform. She hopes it will allow everyone from healthcare providers to law enforcement agents to work more effectively and efficiently.
Cheryl LeBlanc, a mother of twin sons from Shediac, has subscribed to the portal. Her adult son Ryan Hebert was diagnosed with high-functioning autism when he was younger.
“When you live it, when you’re struggling with your son and he does tantrums, once they’re in bed, you just gonna go to bed and say, ‘ok, I hope I survive the next day.’ Even though I love my son to death, it’s a struggle,” she says.
When you spend five hours on Google, you don’t have time as a parent. When you have a one-stop stop shop, you just go there and I can find [articles on a] parent that’s going through the same thing as me.”
LeBlanc said AutismConnectCanada’s platform is a “dream” because it’s not overwhelming and it’s positive. It will also help fill the information gaps as autistic children transition into adulthood.
“Because what we go through, most of the information we got, it was through parents. Doctors don’t know much. [Teachers] don’t know much. Social workers don’t know much on autism. That’s kind of sad because it shouldn’t be like that,” LeBlanc says. “[Social workers] are just so overwhelmed with work and other things, that autism is just a percentage of their workload. When a foster child is getting abused, social workers have to pick their battles too.”
There are many autism resources available in New Brunswick, LeBlanc said. But she’s frustrated by the way silos block the information flow between professionals and the parents of autistic children.
“One organization knows one thing, the other organization knows another thing, but the right hand and left hand don’t talk to each other,” she says.
Zaiane-Ghalia and LeBlanc say the fact that Dionne is not directly affected by autism means she can be more pragmatic in providing information. Parents like them could instead tell her about the kind of information that would be useful.
“I want to be the source of information,” says Dionne. “The things that I’m seeing… how impatient we are with humans … everyone needs to learn about the lives of those living with autism and the struggles that the parents go through.”