Researchers say they hope a new study examining the experiences of families of children with autism could lead to provincial policy changes both within the education system and the Ontario Autism Program, and improved services for these families.
The study, being conducted through a partnership between the Laurier Autism Research Consortium and Autism Ontario, is focused on families' experiences with their child's education, supports and services and the impact on well-being. The research is also looking at how the COVID-19 pandemic has affected these areas.
<img class="alignleft size-medium wp-image-360780" src="https://www.qpbriefing.com/wp-content/uploads/2019/06/Margaret-Schneider-Janet-McLaughlin-405x269.jpg" alt="" width="405" height="269" srcset="https://old.qpbriefing.com/wp-content/uploads/2019/06/Margaret-Schneider-Janet-McLaughlin-405x269.jpg 405w, https://old.qpbriefing.com/wp-content/uploads/2019/06/Margaret-Schneider-Janet-McLaughlin-768x510.jpg 768w, https://old.qpbriefing.com/wp-content/uploads/2019/06/Margaret-Schneider-Janet-McLaughlin-843x560.jpg 843w" sizes="(max-width: 405px) 100vw, 405px" />"Even before the pandemic, families were under heightened stress and many were at a breaking point in terms of crisis, and so adding a pandemic on top of that, I'm really concerned to see how many families may have been pushed over the edge into an even higher level of crisis," said Janet McLaughlin, one of the researchers and an associate professor of health studies at Wilfrid Laurier University.
(Margaret Schneider, left, and Janet McLaughlin, right, are both associate professors at Wilfrid Laurier University and researchers for the autism study. Provided.)
McLaughlin, who has a son with autism, said the idea for this study started in 2020 when the pandemic hit.
"I was juggling working full-time while taking care of two children and having every support around me collapse and my own well-being was really suffering, and so that was the time in which I envisioned we have to do another study to see how people are coping," she said, adding that since then, therapy, schools and family visits opened up, changing the experience for some families. "I think that the findings will be really interesting to look at how things have evolved over this past really unusual year."
The study includes a survey, which has garnered more than 2,200 responses and follows up on one done a few years ago that examined family well-being, mental and physical health, satisfaction with the Ontario Autism Program (OAP) and more, said McLaughlin, adding that much of this might have changed due to the pandemic and the evolution of the autism program over the past few years.
"In each of these domains, we hope to shed light on what's happening and then make policy recommendations," she said. "It's just really important for all of the relevant ministries to have data to inform what's happening on the ground with autism families and to make decisions that will best support them."
When it comes to the autism program, up until recently families were receiving interim funding, childhood budgets or were continuing therapy plans from the previous government's program.
"To have a sense of how families have experienced these different programs and to what extent it's met their children's needs will be, I think, really revealing and may lead to some recommendations about how to improve the Ontario Autism Program going forward," she said.
For families that have accessed the OAP, one of the questions they were asked related to how much they've used it to pay for therapy services, noted Stephen Gentles, a postdoctoral fellow at the university and one of the researchers for this study.
"It might reveal a need that needs addressing given the flux that the OAP has been in and so it might reveal that some families have actually not been ... able to access or benefit from the OAP," he said.
The pandemic has also changed the education experience for youth, including those with autism, with some participating in remote learning while others continued with in-person learning, noted McLaughlin. Determining how many children were in each of those streams and what their experiences were "will be really crucial for informing what might happen this year."
The survey officially closed on Wednesday, though some responses are still coming in, and McLaughlin said the team hopes to get their findings to the education ministry as soon as possible. She's hopeful any recommended changes could be implemented this school year.
"As we saw the pandemic unfold, there were constantly being revisions and changes especially with respect to what happened with children with learning exceptionalities, and so I believe that for this subset of children, it will still be possible to respond to their needs," she said.
Gentles said he thinks the research will be able to help families because the survey involves a large and representative sample of the population. Additionally, the government seems interested in hearing about the results, he said.
When it comes to education, for example, "it could help them give constructive ideas that the government is welcome to receiving ... as well as the OAP," he said, adding that the team will also be conducting around 20 interviews with "harder to access" families including recent immigrants and those in Indigenous communities.
Margaret Spoelstra, executive director of Autism Ontario, said she thinks the research is important because "we've been in upheaval with the pandemic," which has made it very challenging for families.
"So for us, it was really important to continue to ask parents what's happening in their lives, what can we do to help, what messaging can we give to the community about what would help to make it better," she said.
An education-related survey that the organization conducted last summer, which Gentles also worked on, found that 45 per cent of families were "very dissatisfied or dissatisfied" with their experience during the spring 2020 school closures.
In addition to following up with families on education-related topics, the recent survey also touched on caregivers' stress levels and whether they've been able to access supports through the autism program.
"We want to see how are things going, are they actually seeing therapists, what's that experience been like, what's online learning been like, what's it been like in your home, how has this affected not only your own well-being but also your ability to earn income because you're a primary caregiver at home, or having to stay home from work because of COVID and then supporting your children in a home environment," said Spoelstra.
"We hope that there will be changes or that it will certainly inform policy," she said, noting that this includes any potential tweaks to the autism program and that the government took a different direction on the program when Todd Smith was minister of children, community and social services.
"So that gives me hope that there is possibility for adjustment to a program, for highlighting what works well and doing more of that, or shifting investments to the places where we're seeing that kind of improvement and opportunity or ... reducing the barriers to access to those programs," she said. "Our hope is that (Smith's successor Merrilee Fullerton) will be receiving this information, as well as the Ministry of Education and the Ministry of Health to hear these results and adjust their programs where possible to meet the needs of autistic people and their families."

Study to find out how many autism families ‘pushed over the edge’ during the pandemic

Read this for free.