Families of children with autism are in a state of "acute crisis" as they try to juggle high levels of stress and financial burdens in the face of "insufficient supports," according to a new report out of the Wilfrid Laurier University.
"Many families just wrote paragraphs about how their lives had been turned upside down, how they’re taking medications to cope because they can’t manage the stress, how things are falling apart," said Janet McLaughlin, an associate professor of health studies at Wilfrid Laurier University. McLaughlin, whose seven-year-old son Sebastian has autism, co-authored the June 12 report — Autism Services in Ontario: Impacts on Family and Child Well-Being — along with Margaret A. Schneider, an associate professor of kinesiology and physical education at the university and a former support worker for autism families.
"What we found was that when families were better resourced with educational placements that they felt were safe and meaningful for their children and also if they were receiving supports through the Ontario Autism Program that their reported mental and physical health also improved," McLaughlin said.
The study analyzed the responses from more than 650 parents and caregivers of children with autism in a survey containing 179 closed and open-ended responses. The two researchers got participants to complete the survey last summer, long before the current Progressive Conservative government announced in February its plans for a new autism program. But the Feb. 6 announcement from Minister of Children, Community and Social Services Lisa MacLeod was followed by months of protests and outcry from parents and advocates over what they said was a plan that wouldn't meet the needs of all children with autism. The PC government walked back some of its plans in March, with MacLeod saying they would be removing the controversial means testing and adding occupational and speech therapy to the list of services that families could spend their funding on.
The government then announced it would be launching consultations in May to develop a needs-based program and recently announced an advisory panel to help analyze the data and develop recommendations.
Even though the survey was conducted last year, McLaughlin said she still thinks the results are "very relevant towards the current changing context," because a large part of the feedback sought from parents and caregivers was on their experience with the province's autism program, what they liked about it and what they wanted to see changed.
She said that while the government's new program addresses certain asks such as earlier diagnosis with the government putting more funding into diagnostic hubs, for a large part "the changes that were announced did not reflect what parents had asked for, and so it’s still quite relevant to give that feedback."
One key recommendation was that the government "devise an OAP that responds to the individual clinical needs of each child." The report also addressed the impact of the province's system on parents, caregivers and families.
The survey results showed that most respondents felt that their physical health had in some way been affected "as a result of managing the stressors of autism" in the family; 16 per cent said "extremely," 29 per cent said "very," 32 per cent said "somewhat," 17 per cent said "slightly" and 6 per cent said "not at all."
The report showed a similar trend when it came to mental or emotional health, with 42 per cent of people saying their mental or emotional health had been "very" affected and 0.5 per cent saying "not at all."
McLaughlin said many parents, especially women, have had to quit their jobs or work part-time, while other families have seen parents, especially men, working extra jobs or on evenings and weekends. All of this takes "a huge toll on people's sense of well-being and satisfaction with their life" and on their health, she added.
"My conclusion is that it’s not autism per se that is the source of the crisis and the stress, it is the lack of supports," she said. She said people who have a child with special needs and immediately feel supported by the health care, social services and education systems would be better equipped to handle such a diagnosis than those who discover there are "years of wait-time to get into the therapy that your child needs to learn basic skills and you have nowhere to turn."
But her report argues that this isn't an "inevitable situation" and that the system can be changed.
"By better supporting children we’re not only improving their quality of life and enhancing their long-term outcomes — not to mention cost savings that many research projects have shown that the society receives by investing wisely in children’s development — but we’re also improving the health and well-being of families," she said.
McLaughlin said that she too feels as though her health has been affected. While waiting for about three years to get her son into the province's autism program, McLaughlin said she struggled with whether or not to quit her job as a professor, be a stay-at-home mother and focus on her son. For a while she decided to teach part-time in an effort to juggle her son's appointments.
"Many nights I would and still do suffer from insomnia and anxiety just trying to think about how I can manage everything … really worrying am I doing the right thing for my son? Are the decisions I’m making now going to impact his future? If we don’t put every dollar we can into his therapy, will that sacrifice parts of his ability to learn to communicate?" she said. "You just constantly worry and then you worry about what will happen when I’m gone and so you feel this enormous responsibility to stay healthy because there’s no good place for your child to go if you’re not there."
She said that since her son has been in the autism program and also in a supportive school, her health has improved. He has benefited "tremendously" from the program, she said. While he initially received 40 hours a week, he currently receives 20 hours through the program.
"I finally was feeling that my life was more in balance, and then once the announcement came, everything went back into a state of stress again," she said.
McLaughlin addressed her personal connection to the issue, saying that while people will always have their own biases with academic research, she's a proponent of doing "your very best to control those biases and report the data as objectively as possible."
"I really strived to do that with this report, I didn't want it to just reflect my experiences, but rather everyone's experience," she said.
McLaughlin, who is also part of the 20-person autism advisory committee that the government announced, said that while she plans to give the report to the government and the panel, there is much more to consider.
"It will just be one piece of consultation and I will be listening to every piece of consultation that comes in equally, as this report is just one of many hundreds or even thousands of data points that will be coming in," she said.
Derek Rowland, spokesperson for MacLeod, said that the government appreciates the insight that McLaughlin brings to the advisory committee.
"She did say that she was going to be bringing the report to the committee table and of course we welcome that," he said. "The whole purpose of the autism advisory committee is to develop new needs-based supports for all children across the province with autism and her expertise is going to be valued and we look forward to working with them and hearing what they have to say as they provide the advice to the government."
Laura Kirby-McIntosh, president of the Ontario Autism Coalition, said that the mental and physical well-being of parents and caregivers often gets "overlooked."
"We’re so loud in advocating what we want for our kids, that like most parents, we put our own needs last," she said.
Kirby-McIntosh, who has two children with autism, said that looking at the results of the report was like "looking in the mirror" since she saw her own family's experience reflected in the data gathered from all the respondents.
"What really struck me was the level of stress that our families experience, the emotional as well as the health costs and the financial costs of that stress," she said, adding that her family decided one parent would need to stay at home. Her husband Bruce, who was formerly the OAC's president and a staffer in PC MPP Amy Fee's office, spent about 10 years as a stay-at-home dad.
She said that much of the stress doesn't come from the diagnosis itself, but rather the "lack of access to services."
Kirby-McIntosh said that she thinks this stress and the toll it has had on parents' well-being has gotten "exponentially worse" since the government's announcement about its new autism plan, adding that advocates have had to fight both the previous Liberal government and the current government on autism policies.
"Collectively I think it’s fair to say our community suffers from a case of PTSD; we’ve been traumatized twice by two different governments who have ripped the rug from underneath us and turned our lives upside down, and the emotional toll of that has is huge."