Grandmothers of grandchildren with autism need more information and support

By Greta Winograd, PhD, State University of New York, New Paltz and
Alison Sullivan, PhD,
New York City Public Schools

Children with autism spectrum disorders (ASD) tend to have extensive treatment needs. These treatment needs require a lot of time and energy from caregivers and family members. Children and families are likely to benefit from the support given by grandparents. However, little is known about how grandparents experience their interactions with a grandchild with ASD or how family interactions may influence the grandparents’ experiences.

What did you do in your research?
Mothers and grandmothers from families with a child who was typically developing, diagnosed with autism, or diagnosed with Asperger's Disorder participated in the study. They reported on the roles grandmothers play in their grandchildren's lives, challenges grandmothers face, and the extent to which grandmothers feel that they need information about their grandchild. Mothers in the study also reported on family interaction patterns.

What did you find out?
We found that grandmothers of children with autism have different experiences from grandmothers of children who are typically developing. In particular, we learned that having a family member with ASD was associated with more flexible family functioning. Grandmothers felt increased difficulty communicating with their grandchild, giving advice, coping with challenging behaviors, and finding activities to share. They also reported needing more information about the condition.

What are the take-home messages?
Grandparents of grandchildren with ASD should be invited to diagnostic and treatment meetings and educated about their grandchild's needs. They also should be included in conversations with family members when important information is shared and be offered opportunities to join support and advocacy groups. Such experiences may contribute to grandparents' feelings of success in their interactions with their grandchild and improve their effectiveness as members of the treatment team.

To learn more about these findings contact
Greta Winograd (

Full Journal Article
Sullivan, A.,Winograd, G., Verkuilen, J., & Fish, M. (2012). Children on the autism spectrum: grandmother involvement and family functioning. Journal of Applied Research in Intellectual Disabilities, 25(5), 484–494.

Asperger Syndrome and High Functioning Autism Association (AHA)
Interactive Autism Network (IAN)
Autism & the Grandparent Connection, Practical Ways to understand and Help Your Grandchild with Autism Spectrum Disorder
Grandparent's Guide to Autism Spectrum Disorders: Making the Most of the Time at Nana's House