Research Summary: Finding support from others - Why do parents of children with autism join support groups?

Research Summary: Finding support from others – Why do parents of children with autism join support groups?

by Daniela Donoso

What you need to know: Parents who participate in ASD support groups are more likely to have children with high needs, such as having sleep problems, language problems, or who harm themselves, than parents who do not participate in support groups.

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What is the research about?

Parents of children with Autism Spectrum Disorders (ASD) experience considerable distress. Parents who do not have access to formal supports for their child with ASD, like not having access to medical care or health information, can feel isolated and have poor physical and mental health. Parents often note that after they participate in support groups they feel less isolated, more emotionally supported, and learn important information about helpful services. Support groups also give parents a chance to connect with other parents going through the same situation and this support can help people cope with significant stresses.

What did the researcher do?

This study explored factors related to parent involvement in support groups and their experiences in the groups. The researchers used information collected through surveys from 1,005 families of people with ASD in Pennsylvania. Parents were asked about the quality and types of services they were using, their child’s characteristics, as well as demographic characteristics, like their income, ethnicity, age, and location. The researchers compared parents who had participated in support groups to those who had never participated in support groups.

What did the researcher find?

Two thirds of the families in this study participated in support groups for ASD. The parents who were part of a support group were more likely to be married, white, middle income, university graduates and living in a suburban area. Also, they were more likely to participate if their children were harming themselves, had problems sleeping or had serious problems with language. The doctor or clinician who originally diagnosed the child with ASD was often the person who referred the parents to the support groups.

How can you use this research?

The findings from this research can help parents to access support groups. Family doctors can play an important role in helping parents to access support groups. In these support groups, families can support each other and share helpful information about how and where to access services. Future studies can try to explain why parents decide to participate in these groups.

About the Researchers

David S. Mandell is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania, an Associate Director of the Center for Mental Health Policy and Services Research, as well as an Associate Director of the Center for Autism Research at The Children´s Hospital of Philadelphia. Dr. Mark Salzer is an Associate Professor of Psychology in Psychiatry at the University of Pennsylvania.

Citation: Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111-122.

About the Chair

The Chair in Autism Spectrum Disorders Treatment and Care Research is dedicated to studying ways to improve the mental health and well-being of people with Autism Spectrum Disorders (ASD) and their families in Canada.

The Chair is funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet and the Sinneave Family Foundation. Additional support is provided by York University.

For more information, visit the Chair in Autism Spectrum Disorders Treatment and Care Research website at