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Wandering Common & Scary; Research & Guidance Needed

July 26, 2011 35 comments

The first major study on runaway behavior among children with autism confirms that it is both common and extremely stressful for families. Yet relatively few families are receiving professional help or guidance. These insights are among the preliminary results of the IAN Research Report: Elopement and Wandering, a project of the Kennedy Krieger Institute’s Interactive Autism Network (IAN) funded by Autism Speaks, the Autism Science Foundation, and the Autism Research Institute. For more, see our news report on the Autism Speaks Science page. And please leave us a comment about your experience.

Grandparents: Near or Far, Still Amazing

June 1, 2010 7 comments

This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.

Here’s an interesting family photo from 1934. In it is my mother at age four, my grandmother, my great-grandmother (who was partially paralyzed by polio), and my great-great grandmother. It was the Depression. These four generations lived together in a small row house in Philadelphia. Like many other multi-generational households, they cooked and ate meals together, shared economic resources, and raised the children. Though the percent of the population living in multi-generation households has declined since then (although it is now on the rise), grandparents and other members of the extended family still play a large role in helping raise children – especially when a child has special needs.

With the help of grandparents, who wanted to share their experiences and learn about the role of other grandparents, the researchers at the Interactive Autism Network (IAN) developed the Grandparents of Children with Autism Spectrum Disorders Survey. We knew that grandparents played a major role in helping their adult children and their grandchildren. But, we wanted to learn (using scientific methods) how grandparents support the emotional and economic needs of their adult children and their affected grandchildren. We also wanted to know how having a grandchild with ASD had changed their lives.

More than 2,600 grandfathers and grandmothers of grandchildren with ASD participated in this survey, which we administered on the Internet.  They came from all 50 U.S. states and the District of Columbia, and every kind of locale, with 17% from cities, 23% from rural areas, and 60% living in the suburbs. They represented a wide age range, from people in their 40s to people in their 80s, and had varied educational backgrounds.  Though the goal of the survey was to gain knowledge about the nature and extent of the role of grandparents, we also wanted to find out the support, services, and information needs of grandparents.

Participating grandparents told us some very interesting things:

  • So that the grandparent could help his/her grandchild, 20% of the families had moved closer to each other. Nearly 8% had combined households.
  • About 30% were the first to notice that there was a problem in their grandchild’s development.
  • Nearly 90% felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer.
  • About 6% of the grandparents told us that a family situation had become so untenable they had taken on the role of parent.
  • While 86% of the respondents were coping very well or fairly well, 14% reported that they were coping poorly.

Find out more IAN’s two-part series, Grandparents of Children with ASD.

Learn about the Interactive Autism Network (IAN) and how you can participate.

Interested in statistics on the multi-generational household in the United States? Visit the Pew Research Center’s The Return of the Multi-Generational Family Household.

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