Suzanne Wright had a feeling that something was very wrong. Her grandson had been talking, but now was regressing. The words just weren't coming. "Several doctors told me to go home and not worry," Suzanne recently shared with me.
Frustrated, she believed the doctors were wrong. And they were. Her grandson was later diagnosed with Autism, a developmental disorder that usually appears in the first three years of life and affects the brain's development of communication and social challenges. Suzanne, like many grandparents, had been aware of a potential problem early on.
"Autism hit us like a brick," Suzanne said. "It's very hard to face when you've grown up in a generation that doesn't talk about these kinds of things - they were kept in the closet."
Suzanne and her husband, Bob, who was president and CEO of NBC at the time, didn't know much about Autism, and didn't know where to go for help. They searched, but found a dearth of information about Autism Spectrum Disorders (ASD). "There wasn't much online; there just wasn't much out there at all."
Determined to help other families in their shoes, seven years ago Suzanne and Bob founded Autism Speaks, an organization that educates, raises awareness and advocates for those with ASD and their families. This April, Autism Speaks participates in National Autism Awareness Month with a new toolkit specifically for grandparents. According to the Centers for Disease Control, the prevalence of Autism is 1 in 88 children in the United States.
"With many children affected by Autism now - and numbers continuing to grow - so many grandparents are paralyzed. They don't know what to do. They can't face this or accept it."
Suzanne says these grandparents wonder how to help their children raise their grandchild who has ASD. That's where the Autism Speaks' grandparent toolkit: "A Grandparent's Guide to Autism" comes in. The kit helps grandparents:
- Learn about Autism and its impact on your family
- Discover ways to support your children who may be struggling with their child's Autism diagnosis
- Find out ways to develop the best relationship you can with your grandchild
- Feel supported and encouraged so you do not feel lonely or overwhelmed
While learning that a grandchild has ASD can be heartbreaking, I urge grandparents to get active in some way. It's easy to feel overwhelmed, depressed and powerless against ASD, I know because my cousin's son, Jeremy, has ASD.
But as grandparents and other family members we feel so much better when we take steps to help. Try these ways to get involved this Autism Awareness Month and in the future:
- Provide respite for the parents of your grandchild or other family member whose child has ASD
- Help your grandchild get connected with special services or treatments for those with ASD
- Form support groups for other grandparents and/or parents
- Raise awareness in your community by speaking about ASD at a club or community center or sharing your personal story with the media or writing a letter to the editor of your local newspaper
- Participate in Autism walks or other fundraisers
- Advocate for insurance coverage for ASD as well as increased research and services (Congress recently reauthorized the Combat Autism Act)
Let's make a difference in the lives of those affected by ASD. Maybe none of us can cure ASD alone, but there is a sense of satisfaction in doing something about it together.
April is Autism Awareness month. Here are some websites that can be helpful when you have a family member with ASD:
- Autism Interactive Network
- Autism Society
- Autism Speaks
- Autism Research Institute
- Autism Web
- Grandparent Autism Network