Well-Being Practices to Support Autism Caregivers

Caregiver well-being has long been a topic of discussion in the autism community. The Interagency Autism Coordinating Committee (IACC), the federal advisory committee that coordinates and provides policy recommendations to the multiple government agencies that provide resources and support to the autism community, recently held its quarterly meeting focused on the topic of family caregivers. There is a long research history of parents of autistic children reporting higher levels of stress than parents of allistic children (Barroso et al., 2018; Lee et al., 2017; Rivard et al., 2014) and parents of children who experience other developmental disabilities (Griffith et al., 2010; Gupta, 2007).

Much of this parental stress emanates from the lack of adequate resources and supports for family members of all ages, but particularly for adults. Though it’s to be expected for autistic children to live with their parents, a disproportionate number of autistic adults also remain living with their parents (Roux et al., 2015). This living arrangement is of particular concern as parents age (Marsack & Samuel, 2017).

In the United States, autistic children have a right to a free, appropriate public education through the Individuals with Disabilities Education Act (2004). Although educational services are mandated, families of autistic children still struggle to find appropriate support programs outside of the school setting. The challenges in finding support for autistic adults are significant, with parents reporting that services are difficult to obtain and wholly inadequate (Marsack & Samuel, 2017).

This post is going to share well-being practices that parents of autistic children have used to decrease stress and promote well-being, but it is essential to look upstream and address these system-level factors. As the wise Dr. Lakshmin (2023) says, "You can't meditate your way out of a 40-hour work week with no childcare, without health insurance.” You also can’t meditate your way out of caring for your 50-year-old autistic son, who requires 24/7 supervision with no respite services, day programs, or community living supports. The system must do better.

While advocating for and addressing these system-level issues, parents can be supported in learning and engaging in evidence-based well-being practices to support their well-being. Two fairly well-known practices in today’s society are mindfulness and gratitude.

1. Mindfulness. The American Psychological Association defines mindfulness as the awareness of one’s internal states and surroundings, and the practice is used in many therapeutic interventions. Mindfulness has also made it into popular culture as a practice that can increase well-being. Some of the practices of mindfulness include specific breathwork (Aideyan et al., 2020), meditation, and progressive muscle relaxation (Feldman et al., 2010). There is some specific research dedicated to parents of autistic children. Practicing mindfulness has been found to help decrease the stress of mothers of autistic children (Lilly & Tungol, 2015; Weitlauf et al., 2020).
2. Gratitude. Gratitude is the act of recognizing and acknowledging the good things that happen, resulting in a state of appreciation (Sansone & Sansone, 2010). Some of the practices of gratitude include keeping a gratitude journal, writing and reflecting on good things that happen each day, and writing gratitude letters to convey your gratitude to others. The practice of gratitude has been shown to contribute to a decrease in depressive symptoms for parents of autistic children (Martin et al., 2019), and a disposition of gratitude also increases the likelihood of improved social support for parents (Lovell & Wetherell, 2023).

It may seem easy to say to parents, “Start engaging in mindful practices and keep a gratitude journal—your stress will decrease.” But in an already overloaded lived experience, this might just seem like someone saying, “You want me to do more!” Our system of care has to figure out how to build in these practices as a helpful, supportive gesture. Maybe parent support groups can start with a mindful moment where everyone can breathe together, or service providers can start conversations with families by asking, “What went well today?” to help parents identify the good in their day—even if it was just that they had time to sit down and eat a sandwich.

Family caregivers need more support. Their well-being is unacceptably low compared to that of other sectors of the population. We must take action, systemically and individually.