We autism grandparents sometimes feel like nobody else has the same challenges and family dynamics as us – that our situations are unique and nobody else can really understand. Of course our feelings are technically accurate in that each grandchild with autism is unique – and thus our own situation is unique. But there is knowledge and research about autism grandparents that can be helpful to all of us as we try to understand and make the best of our personal situations.
Dr. Jennifer Hillman has published several scholarly research articles about autism grandparents – all of which amplify the importance of autism grandparents. Following are 20 takeaways from her June 2007 article entitled, “GRANDPARENTS OF CHILDREN WITH AUTISM; A REVIEW WITH RECOMMENDATIONS FOR EDUCATION, PRACTICE, AND POLICY.” Even though the article is now 13 years old, it continues to be poignant and valuable. The article, which can be found via Google, sites dozens of research sources from which Dr. Hillman derives her information.
“One in 166 grandparents will become grandparent to a child with autism.” (That number is likely much greater now in 2020.)
Autism “grandparents hurt twice: once for their child and once for their grandchild.”
“It is important to discuss grandparents of children with autism as a unique population in relation to grandparents of children with other disabilities.” They are subject to “a unique series of stressors. These stressors include behavioral problems, difficulties in communication social isolation and stigma, difficulties in obtaining and implementing treatment, concomitant medical problems, problems in sustaining employment, financial burden, and an unclear prognosis.”
“The difficulties in communication inherent in autism can lead parents and grandparents to experience sadness, frustration, and disillusionment.”
“Families have reported significant difficulty in initiating and sustaining ABA programs and in obtaining appropriate services from both early intervention and school systems. Estimates suggest that less than 10% of all children with autism receive appropriate treatment.”
“Parents of children with autism report higher levels of stress than parents of children with mental retardation, Down’s Syndrome, and cerebral palsy. Additional findings suggest that up to two thirds of mothers of autistic children suffer from depression.”
“Another significant source of stress is that the long-term prognosis for autism remains unclear. Current reviews suggest that nearly half of all adolescents and young adults with autism suffer from anxiety or depression, with approximately only 15% possessing the skills to live independently.”
“Grandparents engage in a variety of activities that provide both emotional and instrumental, or practical, support to parents of children with autism. Emotionally supportive activities include listening and providing empathy and friendship.”
“Maternal grandmothers receive highest ratings and reports of satisfaction [regarding their support] from both mothers and fathers.”
“Close mother-daughter relationships have been associated with reduced parental stress.”
“Specific areas of conflict [between parents and grandparents] may include disagreement over treatment or discipline for a child’s behavioral problems.”
“A lack of knowledge about a child’s diagnosis and symptoms appears related to a state of role confusion among grandparents of children with autism.”
“Research suggests that grandparents who maintain limited involvement with disabled grandchildren do so in response to poor relationships and previous conflict with their adult children, rather than their grandchild’s disability per se.”
“Although custodial grandparents in general appear to be a diverse group, they also share a common need for social support. Obtaining support through social service agencies and support groups can serve as a buffer for grandparental caregivers who must cope with a disabled child’s health care or behavioral problems.”
"Because various studies suggest that nearly half of adolescents and young adults with autism suffer from anxiety and depression, positive interactions with grandparents could provide essential support.”
“Educational needs [for autism grandparents] include the design of curriculums and programs that will help grandparents explore and define their role as grandparents of a child with autism. Grandparents also need accurate information about the symptoms and treatment of autism.”
“Limited knowledge about a child’s disability can hamper grandparental involvement. . . . Open, guided communication between parents and grandparents to mutually define grandparental responsibilities and roles would be desirable.”
“. . . encourage grandparents to join support groups . . . The benefits appear great.”
“Life planning is another essential area . . . particularly for custodial grandparents . . . Talking openly between parents and grandparents about custodial arrangements in the event of a caregiver’s untimely death can also be challenging but critically important aspect of life planning.”
“ . . . few social workers engage grandparents in their work with autistic children, and nearly half expressed no interest in learning more about ways to incorporate grandparents into diagnosis or treatment. This apparent stigma or reluctance among professionals to learn about autism as it relates to grandparents must be challenged and rectified in order for all family members, including grandparents, to receive appropriate and effective help.”
One thing we grandparents can continually do that will be helpful to our grandchildren and their families is to learn more and more about autism and about autism’s relationship to grandparents. Dr. Jennifer Hillman has written several articles about this, and each can be helpful to us.