Grandparents Fortify Families of Autistic Kids

Early intervention is essential for successfully treating children who have autism, and a recent survey shows that grandparents across the nation are making significant contributions in this area.

The Interactive Autism Network gave AARP an exclusive first look at the results of its new survey of grandparents who have grandchildren with Autism Spectrum Disorders (ASD). The Network is an innovative online project (a Web project of the Kennedy Krieger Institute, sponsored by Autism Speaks) that brings together tens of thousands of people nationwide affected by ASD with hundreds of researchers—all in search of answers.

The survey highlights the major role grandparents play in the lives of children diagnosed with ASD. According to the survey, grandparents not only are often the first to raise key concerns about their grandchildren’s development (by 31 percent), but they also support others who raise concerns (by 48 percent).

Why a survey of grandparents whose grandchildren have autism? Dr. Paul Law, director of the Network and the father of a child with ASD, said the organization gathers information from parents of children with ASD and also matches them with research projects across the nation.  The cooperation of families is key to accelerating the rate of research on the topic. He said, "Eighty percent of studies on autism either fail or are delayed for lack of families to partner with (the scientists) in the research."

But the Network had not been collecting information from grandparents. And because the Network was hearing from families that grandparents play a significant role in their grandchildren's lives, they launched the grandparent survey.

Autism Spectrum Disorders (ASD)

The National Institute of Mental Health defines "Autism Spectrum Disorders"—also known as "Pervasive Developmental Disorders" (or "PDDs")—as "conditions that can cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others. These disorders are usually first diagnosed in early childhood and range from a severe form, called 'autistic disorder,' through 'pervasive development disorder not otherwise specified' (or 'PDD-NOS'), to a much milder form, Asperger's syndrome. The spectrum also includes two rare disorders, Rett syndrome and childhood disintegrative disorder."

Any two people with an ASD diagnosis may not have the same symptoms or the same level of severity of a certain symptom. Symptoms can vary but usually include difficulty socializing and with verbal or nonverbal communication. Many people with ASD have obsessively repeated behaviors, but those behaviors can vary from making a certain sound or movement over and over again to being entirely consumed with a certain topic or routine.

With more than 2,600 grandparent-respondents, mostly between the ages of 55 and 74, the survey revealed that grandparents play crucial roles in the lives of their grandchildren with Autism Spectrum Disorders. In fact, 72 percent say they play a part in making treatment decisions for their grandchildren.

Debbie Melching of Mansfield, Ohio, took the survey. "[With] anything that’s related to autism, I try to participate, because I want to help raise awareness and get more research to help," said Melching. Her grandson, Daylin, was diagnosed with autism at age 3.

And many grandparents agree with the need for research on autism. Carol Cutler of Little Elm, Texas, took the survey after learning about it in an e-mail; she said, "I was hoping that the bit of information I could provide, combined with other grandparents', might lead to more research or help. And I think grandparents need to know that they are not alone."

Grandparent Support

Kathy Shea of Las Vegas said the diagnosis of her grandson, Collin, at age 2 was traumatic for the whole family, and especially her son, Steve. He was afraid he wouldn't be able to have the kind of relationship with his son that he and his father had.

Maxine Kilstrom of Sioux City, Iowa, said the first things that came after her grandson Tyler's diagnosis were tears. At the same time, "It was almost a relief [for him] to be diagnosed with something—to have a reason for his behaviors."