Grandparents are often the first to realize that a young grandchild has autism, but they often hesitate to say something to the child's parents, which can delay the best available treatment for autism: early intervention. That's the news from a first-ever survey of grandparents of children with autism, conducted by the Interactive Autism Project (IAN), the largest online autism research registry in the world. More than 2,600 grandparents responded to the online survey, which was sponsored by the Kennedy Krieger Institute in Baltimore and the advocacy group Autism Speaks.
"I was the first to put a name to his condition," one grandmother reported. "I knew earlier, but [it is] extremely difficult to tell your child that you believe her child has autism." Another grandmother said she noticed signs of autism in her grandson at age 2, but didn't know how to voice her concerns without hurting the boy's parents. "What is wrong with him?" was a third grandmother's initial response to meeting her three and a half month old grandson. "My daughter said nothing was wrong; we were scaring him," she recalled. But her grandson wouldn't tolerate anyone touching him, he screamed constantly, and he wasn't eating well, she said, behavior she didn't feel was typical for a child his age. "Three-month-old babies love all the attention and love they receive," she said.
We parents shouldn't be so quick to brush off suggestions from our parents or in-laws that something doesn't seem quite right with our young children. "Grandparents may have had a lot more experience with toddlers and infants and just know," says Connie Anderson, community scientific liaison for IAN. But any parent—or grandparent— can tell you that family dynamics can make that type of communication painful, if not impossible. "Back when I suspected it, my son got bitter with me, and still is," said one grandmother.
Once a child is diagnosed with autism, grandparents often find themselves trying to help both grandchild and adult child. Fifty-seven percent of those surveyed said they worried about the stresses on their adult child a great deal. Some grandparents quit work to help care for the child, while others said they left retirement and went back to work so a parent could stay home. Some struggled to meet the challenges of caring for a severely disabled grandchild, but many said they treasured their relationship, and confided that the grandchild with autism was their favorite.
"This is the largest set of data on autism and grandparents in the world," says Paul Law, a pediatrician who directs the IAN project (and who has a son who was diagnosed with pervasive developmental disorder not otherwise specified). "In the future, the IAN project hopes to involve grandparents in its research project on the genetics of autism, which includes 11,000 families." But the project doesn't yet have the resources to include grandparents in its database, which would enrich the research by providing another generation of genetic data. In the meantime, Law says, he hopes that grandparents will encourage their children to get involved in IAN or other autism research projects. Or, they can do what many grandparents are already doing and become advocates for autism awareness through fundraising walks, advocacy, or legislation in the their states.
For more on the IAN Project, check out my interview last fall with Paul Law last fall on the project's effort to create a research database of families with children on the autism spectrum disorder, and how that can help speed research on causes and cures.
Clarified on 04/15/10: An earlier version of this story imprecisely described the Interactive Autism Project (IAN). It is the largest online autism research registry in the world.