In April, Beth Dierker of Communities Engaging Autism co-presented with Amy Gunty and Pang Chaxiong of the University of Minnesota at the Autism Society of Minnesota’s Annual Conference. Chaxiong and Gunty both bring a family and cultural lens to their work in neurodevelopmental disabilities and Dierker connected with them thanks to the UMN LEND Program. The three women’s presentation, entitled “Promoting Family Community Integration: The interplay of family adaptation, resilience, and culture,” wove together big ideas that resonated with participants. Below are some of the key ideas discussed.
Dierker shared a “process map” of a family journey which combined her experience raising a child with ASD with concepts from studies on family stress, adaptation, and social support. “When we were feeling confused and exhausted,” Dierker recalled, “I just kept reminding myself, ‘We can’t be alone in this. Others have experienced this too. This must be part of a bigger pattern.’” She later found concepts and frameworks around family stress and resilience that resonated strongly with her experience—ideas that graduate students and researchers Gunty and Chaxiong had been exploring and contributing to for some time.
Chaxiong invited participants’ input on what community integration looked like in their lives and suggested that some key indicators of community integration might include:
• Having a support network
• Being able to work or contribute to society
• Participating in recreational activities
• Accessing public activities and community spaces
She pointed out that being integrated in community decreases isolation, increases socialization, and reduces stress and yet many factors make integration difficult for families impacted by ASD (i.e. difficulty/time navigating systems for support, stigma/lack of understanding). The presenters proposed that family community integration and family resilience may have a bi-directional relationship—the strength and growth that comes through the resilience process (discussed below) facilitates community integration. At the same time, being integrated into community provides the resources and support a family needs to adjust for crisis/stressors—a process that characterizes resilience.
Drawing from research findings, Gunty explained, “Families of children with ASD experience more stress than families of children who develop typically or families of children with other disabilities. Even so, many families of children with ASD experience family functioning that is at least as healthy as other families and report that their child’s ASD positively impacts the family.” She shared the image below to illustrate how families constantly adjust as they try to balance stressors and resources in their lives and make sense out of their experiences in the process (labeled “meaning-making”). She highlighted examples of stressors and resources at the individual, family, and community levels and emphasized that the process of adjustment is dynamic and is unique to each family at any point in time. Gunty suggested that “crisis” happens at the point in time when a family’s stressors outweigh its resources. For some families and situations, crisis is resolved. For others, crisis becomes an almost constant state.
Meaning making, culture, and resources
As the image illustrates, meaning making plays a pivotal role in the family resilience process. Dierker shared some insights around meaning making and noticing the stories we tell ourselves—examples drawn from personal experience and principles she learned in CEA’s Mindfulness-based Stress Reduction classes for parents of kids with special needs. Chaxiong and Dierker discussed culture as a lens through which we view, understand, and respond to our circumstances. The presentation closed with take-away tools for growing parents’ and caregivers’ resources and support systems.
The topics of family resilience and community integration are deeply relevant to Communities Engaging Autism’s mission and vision as well as to our offerings like Family Meetups, mindfulness classes (look for opportunities in 2019-2020!), Lecture Series, and the Oxygen Mask podcast. Over the coming year, the CEA blog will look more closely at the work that informed this presentation and, as always, bring those ideas into practice in the work CEA does to empower and inform you. Thanks for reading!
Gunty, A. (2019). Rethinking resilience in families of children with autism spectrum disorders. Unpublished manuscript, Department of Family Social Science, University of Minnesota, St. Paul, Minnesota.
Patterson, J. M. (2002). Understanding family resilience. Journal of Clinical Psychology, 58(3), 233–246. https://doi.org/10.1002/jclp.10026
Email [email protected] for a full reference list from the April 2019 presentation outlined above.