What does stress really look like for parents of autistic children?

Oct. 29, 2024

By Stephen Gentles, research partner, Laurier Autism Research Consortium
Janet McLaughlin, associate professor, Health Studies
Margaret Schneider, associate professor, Kinesiology and Physical Education

In our new paper, authored by members of the Laurier Autism Research Consortium, we recognize stress as an evolving process for parents of autistic children. While previous research has largely focused on stress related to caregiving, we shed light on the varied sources of parental stress experienced over time.

Autism is a lifelong neurodevelopmental condition estimated to be diagnosed in one in 36 children. Autistic people can have wide-ranging differences in social communication and interaction, as well as restricted or repetitive patterns of behaviour, interests or activities. Autism is also increasingly recognized to come with different strengths.

After speaking to parents, we learned that when they first begin to navigate care related to their child’s autism, stress can have an empowering effect, driving their motivation and capacity for action. However, the destructive effects of stress grow over time, as impacts on parents’ emotional and physical well-being become more apparent.

Since autism is lifelong, the course of parents’ stress has a long time to change in different ways over the years. In the long term, parents usually find a way to restore a sense of balance in life. Stress from various sources may continue, but it is generally at a lower level than early in the parent’s journey.

Research team (left to right): Stephen Gentles, Janet McLaughlin, Margaret Schneider

A key message of this research is that many of the causes for increasing stress have to do with parents’ highly demanding roles as care navigators in a system that is not supportive enough. In other words, stress shouldn’t be seen as only due to parenting. The barriers parents face while pursuing care for their children are usually the most unnecessary sources of harmful stress. 

The paper also provides a new definition for 'crisis,' which was developed from the caregiver’s perspective. This definition acknowledges that different things can be in crisis — the parent, family, spousal unit, child or parent-child unit. It also recognizes that crisis can be triggered by progressive buildups of stress, and not just acute major triggering events. In the words of one mother with a 17-year-old autistic son, “I don’t think there’s ever been a time when it’s been one specific [trigger of] crisis. It’s always been too many things. When it rains, it pours.”

Dilin, a divorced mother of a six-year-old autistic son, suffered from generalized anxiety disorder, triggered by navigating autism intervention, and depression due to overextending herself that led her to shut the world out. She described how a combination of disagreement with her husband about approaches to intervention and her neglect of their relationship after dedicating most of her time to care navigation led to marital crisis, ending in divorce.

Her ex-husband’s subsequent unwillingness to provide any financial support, combined with the fact they had previously re-mortgaged the house to finance intervention, led Dilin to financial crisis in the form of personal bankruptcy, where putting food on the table for her three children became a greater concern than her son’s autism.

The stress of these events, combined with the underlying autism-related stresses and the associated self-neglect, finally took a toll on Dilin’s physical health. She developed hypertension and was even hospitalized for a “mild heart attack” while home alone caring for her children. This experience of physical crisis, combined with her doctor’s warnings that she “had to find ways to focus on [her]self,” forced Dilin to recognize the catastrophic possibility that her children could potentially be left with nothing if she continued at the same pace without tending to her own health. This was the breaking point that pushed her to come to peace with her limits and seek balance both physically and emotionally.

“I gave myself permission to take some time off,” says Dilin. “One of the things I have learned since then is that you need to change your expectations when you’re dealing with autism.”

Other caregivers also described a desperate need for “change in direction” that they achieved through psychological strategies or by changing their level of functioning.

Our updated definition of “crisis” provides a basis for professionals to develop better assessment tools, especially for families who have unique needs related to having an autistic child.

Importantly, these results have potential to improve professionals’ understanding of and sensitivity to the experiences of stress from the perspectives of parents. This includes doctors, psychologists, educators, social workers and anyone who may provide services or care over the life-course of a child. The paper also shows how to integrate this new understanding of stress with existing stress theories that psychologists and related professionals may be aware of.