IAN Project launches the Grandparents of Children with Autism Spectrum Disorders Survey

Interactive Autism Network invites grandparents to share valuable experiences

Since its launch in 2007, the Interactive Autism Network (IAN) has helped to accelerate the pace of autism research by gathering valuable information online from individuals on the autism spectrum and their parents. Today, the IAN Project launches the Grandparents of Children with Autism Spectrum Disorders Survey, giving grandparents a well-deserved voice in the autism research community.

"As soon as the IAN Project began, grandparents of children with autism spectrum disorders (ASDs) began contacting the research team," said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute in Baltimore, Maryland. "They felt that they had important insights about their grandchildren and were telling us that they had been very much affected by the experience of helping raise a child on the autism spectrum. They wanted to participate in research and to tell their stories."

The IAN Project has the largest pool of autism data in the world, with over 30,000 registrants. However, the IAN research team came to realize that little is known about the extent of grandparents' participation in supporting families of children with ASD, or about the impact that having a grandchild with an ASD has on the grandparents themselves. The new survey will explore many aspects of having a grandchild on the spectrum, including the degree to which grandparents provide child care, transportation to medical or treatment appointments, and financial support. It is hoped that the results will help researchers, policymakers and advocates learn about the experiences and opinions of grandparents of children with an ASD, and advance efforts to advocate for improved services and resources.

Grandparents residing in the United States and its territories are invited to complete the anonymous internet survey. Grandparents can have a biological, adoptive, or step-relationship with their grandchild on the autism spectrum, and the grandchild can be of any age.