Join us on September 21, 2011 at 1pm EDT for a LIVE Chat with Autism Speaks’ Co-Founder, Suzanne Wright! You can read a special letter written by Autism Speaks Co-founders Suzanne and Bob Wright, grandparents of a child with autism, here.
Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.
Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.
In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.
The Wrights have three children and five grandchildren.
Click here to read A Grandparent’s Guide to Autism.
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.