Dr. Janet McLaughlin, associate professor of health studies at Wilfrid Laurier, encourages her autistic son Sebastian to strum on the guitar while singing at their Waterloo home.Alicia Wynter/The Globe and Mail
Mothers of autistic children in Ontario are earning significantly less than fathers in the same household, making an average of 66 cents for every dollar a father earns, a new study suggests.
Typically, mothers are the primary caregivers of autistic children, researchers found, and the hours they spend navigating services for their children harm their careers and job satisfaction. The inequality is having a “detrimental” effect on mothers’ financial independence and well-being, the study from Wilfrid Laurier University concluded.
Researchers surveyed more than 900 mothers of autistic children in Ontario on their income and the hours they spend each week navigating services for their children, as well as their job satisfaction and career sacrifices.
Many mothers reported giving up their jobs or being fired because they struggled to meet employers’ expectations for on-site work or frequently needed to pick their children up from school or child care early, said Janet McLaughlin, the study’s lead author and an associate professor of health studies at Wilfrid Laurier.
Dr. McLaughlin’s career in academia began with researching migrant workers, but when she found out her son had autism, she became interested in studying the disorder.Alicia Wynter/The Globe and Mail
Those mothers “felt a real sense of grief and remorse that they were not able to practise the profession they had trained in,” Dr. McLaughlin said. “It wasn’t at all a sense of relief that they weren’t working.”
“Mothers are taking on the lion’s share of the caregiving, and it’s impacting their incomes.”
Dr. McLaughlin’s career in academia began with researching migrant workers, but when she had her autistic son, Sebastian, she became interested in studying the disorder.
“As I went through the journey of parenting him, I realized just how time-consuming it was to navigate all of the different therapy options, and the fact that there were just not enough funded options,” Dr. McLaughlin said. “The responsibility would fall on me to carry that load.”
The study highlights an issue facing mothers whose children have significant health care needs. Other research has found that mothers of children with cerebral palsy or Down syndrome, for example, struggle to fulfill their employers’ expectations and work as many hours as they desire.
Costs for parenting autistic children can vary greatly based on their needs, ranging from modest support to occupational therapy and higher costs for 24-hour care, said Canadian economist Mike Moffatt, who is also the father of an autistic child.
Parents facing high caretaking costs while struggling to work are being “squeezed both ways,” Dr. Moffatt added.
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In order to support his son, Dr. Moffatt primarily works his full-time job – at a University of Ottawa think tank studying how to help young middle-class Canadians – from home. He also completes much of his work between 5:30 a.m. and 7:30 a.m.
Dr. Moffatt said few employers would accommodate schedules like his, and workplace disability accommodations are often wrongly seen as “charity or a privilege.”
When mothers of autistic children are unable to work, Ontario misses out on skills that contribute to the province’s economy and well-being, he said.
Creating conditions that allow parents of children with disabilities to work “makes us all better off,” Dr. Moffatt added.
Research on the financial and employment toll for mothers of autistic children is limited, the study said, but Dr. McLaughlin said analysis in other countries has offered similar results.
“This is not a problem isolated to Ontario at all,” Dr. Moffatt said, adding he would expect similar results in other Canadian jurisdictions. “This is a challenge everywhere.”
Dr. McLaughlin says she hopes her findings will ultimately validate other mothers’ experiences.Alicia Wynter/The Globe and Mail
For example, a 2019 systematic literature review that looked at research from Canada, the United States, China, Britain and Sweden found that parents of autistic children, especially mothers, have fewer opportunities for employment.
Autism Ontario has heard that mothers find it “extremely challenging, if not impossible, to meet both caregiving and work responsibilities,” said Amanda Dimilta, the charitable organization’s chief advocacy, policy and community engagement officer.
Ms. Dimilta said she would like to see the Ontario government consult further with caregivers of autistic children and invest more funding into autism research.
As Canadian employers are increasingly pushing employees toward in-person work, Dr. McLaughlin said flexibility to work from home is important for mothers who may need to pick their autistic children up from school on short notice.
“I would really like employers to just consider employees as humans, as caregivers – not just someone who shows up at work,” Dr. McLaughlin said.
Mothers whose employers supported their caregiving needs reported feeling greater satisfaction at work, she added.
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Workplace accommodations have made a world of difference for Vanessa Coens, who is the mother of four children between the ages of 3 and 18, three of whom have autism.
Flexibility to work evenings “made me feel so seen and understood,” said Ms. Coens, who worked with adults with developmental disabilities before joining Autism Ontario as the organization’s people and family experience co-ordinator.
Mothers of autistic children “want to contribute, but sometimes that’s just impossible with the demands of where we work,” Ms. Coens added.
She encouraged mothers of autistic children to understand their employer’s perspective, be honest about their own needs and trust that a solution is possible.
Dr. McLaughlin is currently studying mothers of autistic children from marginalized communities, including Indigenous and recent immigrant mothers, who she said are underrepresented in autism research.
“Underserved communities are being affected even further” because of language barriers, racism and poor access to services in remote communities, she said.
Dr. McLaughlin said she hopes her findings will ultimately validate mothers’ experiences.
Many mothers described “feeling guilt or inadequacy – as though they were letting their family down or letting their profession down,” she said.
“I want them to feel some relief that this is not an individual failing. It’s a systemic failing.”