Home > IAN, In Their Own Words > Grandparents: Near or Far, Still Amazing

Grandparents: Near or Far, Still Amazing

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.

  1. sandra deleon
    June 1, 2010 at 2:44 pm

    Wow very interesting.See grandparents are AWESOME they do love their little ones so so much.

  2. Ashley Wagner
    June 1, 2010 at 4:42 pm

    This is great! My son has PDD-NOS and ADHD, if it wasn’t for my mother I do not know how I would be coping! She is my support system and helps me to take care of my self, as much as my son and daughters!

    • Charlotte
      December 30, 2010 at 7:29 pm

      I just found out yesterday that one of my precious grandsons has been diagnosed with PDD-NOS. Our family is in shock and need to know what to do now. What is his future like? My daughter homeschools all her children and I want to help as much as I can. What can we do? Where do we turn?? Charlotte MeeMaw

  3. Ursula Accorinti
    June 2, 2010 at 11:16 am

    Awesome! My son is 4 and has PDD. If it wasn’t for my parents, especially my mom, I don’t know what I would do. They love him so much and he loves them too!

  4. diane holitik
    June 3, 2010 at 11:08 pm

    Grandparents are great! I don’t know what I would do without my parents’ help, love, and support. They have been my rock through it all. Our son has the BEST grandparents. They help me with him, but also help our older child not feel left out. My kids LOVE their grandparents (and we do, too).

  5. dugmaze
    June 23, 2010 at 10:11 pm

    How come none of the grandparents have autism?

  6. Elaine
    October 17, 2010 at 2:09 pm

    Our granddaughter has Autism. She is almost 4, not talking yet, but working very hard with her therapy. Her parents are the best! They take her 45 minutes one way to therapy, then return at 7:30 PM to get her ready for the next day. She also goes to full time school. We live many states away are are not able to help them out. We love the stories of her progress and encourage them all the time. Cannot wait to see her on our next trip.

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