What you need to know
According to mothers, crises in families of children with autism spectrum disorder (ASD) consist of four major areas: demands, internal capabilities, external resources, and subjective appraisal. A crisis is an experience that arises when people lack the resources to meet demands in their lives. Demands can include child behaviour, family problems and health problems. Resources can include support, emergency services and finances.
What is this research about?
Parents of children with ASD can often experience high levels of depression, anxiety, and other mental health issues. The combination of these stressors may develop into a crisis and create serious issues for the family. It is important to understand crises in families with children with ASD because this can serve as a guide to delivering service to those families who are at-risk. In this study, the researchers aimed to define ‘crisis’ and explore what it meant to mothers of children with ASD. They aimed to understand and create a comprehensive map of the crisis experience.
What did the researchers do?
Participants were recruited through online postings, email, and word of mouth. Data was used from a large, online survey conducted with parents of people with developmental disabilities in Canada. In order to explore the participants’ experiences with crises, they were asked:
“People have different ideas of what a crisis is. In your own words, what would a crisis look like for you?”.
Participants were then able to respond in various ways; such as describing a previous event they saw as a crisis and listing characteristics they associated with crises. The researchers sorted the responses into themes to identify and understand participant perspectives. There were 155 mothers involved in the study, whose children ranged from 5-48 years old.
What did the researchers find?
The themes that emerged indicated that a crisis is the result of an imbalance between many types of demands in one’s life (including child behaviour, family problems, and health problems), and the external resources that are available to meet these demands (such as support from family and friends, emergency services, finances). The crisis experience is defined by the parent’s belief that they cannot internally manage the demands (with failed coping skills or functional impairment) and a negative view on their situation (including feelings of hopelessness or extreme stress). When defining a crisis, many mothers specified its timing, and past experiences that were chronic (e.g., frequent, daily lives, regularly). The authors mention that there are several limitations to this study, including the sample consisting of all mothers, and the fact that the data was originally collected and used for another purpose.
How can you use this research?
Future research can build on this study by exploring the experience of all parents through qualitative interviews. It would also be valuable to interview service providers and individuals with ASD about their definition of a crisis. Using the knowledge gained through this study, future interventions can target specific causes of crises, such as the mothers’ perception of the situation or ability to cope with challenges.
About the Researchers
Dr. Jonathan Weiss is an Associate Professor in the Department of Psychology at York University. He was awarded a Chair in Autism Spectrum Disorders Treatment and Care Research.
Dr. Yona Lunsky is a researcher at the Centre for Addiction and Mental Health in Toronto, Ontario.
Aranda Wingsiong is an MA student in clinical psychology at the University of Windsor.
Citation
Weiss, J.A., Wingsiong, A., & Lunsky, Y. (2013). Defining crisis in families of individuals with autism spectrum disorders. Autism, 18(8), 985-995.
This research summary was written by Jordan Cleland for the Chair in Autism Spectrum Disorders Treatment and Care Research. This research summary, along with other summaries, can be found at asdmentalhealth.ca/research-summaries
Reproduced with the permission of Dr. Jonathan Weiss (York University). This research summary was developed with funding from the Chair in ASD Treatment and Care Research. The Chair was funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, Kids Brain Health Network (formerly NeuroDevNet) and the Sinneave Family Foundation. This information appeared originally in the Autism Mental Health Blog (https://asdmentalhealth.blog.yorku.ca).
Photo by Markus Winkler on Unsplash
