Bonnie Malkin Gillman took Psych 101 in the early '60s. The autistic children in her textbook wore helmets, were self-injurious and more often than not, were confined to institutions for lifetime care. Fifty years later, when her grandson was diagnosed with autism, Gillman was understandably terrified and brimming with questions. Not wanting to burden her son and daughter-in-law with the responsibility of educating her, Gillman decided to update herself about current autism research and treatments, and in the process figure out how to support her children without taking over their lives.
Today, Gillman has learned that old stereotypes no longer apply. She is well informed about the wide variations that exist in children who fall along the autism spectrum. She is also executive director of the Grandparent Autism Network, an all-volunteer nonprofit organization she founded with the mission of educating grandparents about autism and about how they can best help and support their families.
While autism professionals continue to scramble to find causes, preventive measures and treatments, the number of families impacted by the disease continues to grow at an alarming rate. A few years ago the organization Autism Speaks wrote on its website, "If you don't know someone with autism today you will within two years." Now that the number of autistic children has risen to 1 in 88, their prognostication seems to have been realized.
"Grandparents are a particularly vulnerable group," Gillman told me. "They want to jump in and save the day. They want to fix everything in a short period of time. If someone had told me years ago that snake oil was a cure for autism, I would have mortgaged my house to buy snake oil for the kids."
Gillman wants to make sure grandparents support their children in valuable ways without being overbearing. Through her work she has met hundreds of grandparents who run the emotional gamut from concerned to suicidal. Many have found comfort from other grandparents they met through GAN.
"Grandparents, after all, suffer a triple whammy," she said. "They are worried about the future of their grandchildren, but they are also worried about their children's welfare and the impact this disease can have on their kids' physical and emotional health and on their marriages. And they worry that their future grandchildren and great-grandchildren will be affected if this turns out to be an inheritable disease."
No one disputes the fact that parents are the frontline warriors in the battle for their children's well-being. They face the day-to-day trials. Grandparents often feel helpless as they watch from the sidelines. When well-intentioned grandparents come on too strong, their children sometimes reject them. When they don't do enough to help, their children sometimes resent them.
The Grandparent Autism Network (GAN) has been a godsend for thousands of tremulous grandparents. The organization's e-newsletters focus on issues such as how grandparents can teach independent living skills to their grandchildren, how to begin a grandparent support group, how to raise community awareness and support for people with autism, how to prepare for the holidays, what safety measures grandparents can adopt, suggestions for recreational activities, gift ideas for children and grandchildren and how to open new employment opportunities. Newsletters also update grandparents on the latest research and information from distinguished autism professionals.
Gillman is particularly concerned about what will happen to her grandson and other children like him as they mature. She said 90% of community resources for autism are spent on children under the age of ten. The reality is that these kids are going to grow up. There isn't a city in this country that has the resources for all the services these young adults will need in the areas of housing, transportation, employment, recreation and community integration. Gillman sits on a task force in California that is looking at how to extend and expand services to the autistic community without adding money into the budget. She is hoping other communities in other states will follow suit.
I am joining GAN because I have an "honorary" grandson who is autistic and I'd like to be kept abreast of new information without bothering his parents for it. Membership is free. Their website is chock full of project ideas, valuable information and support. Projects that were successful in Gillman's community can be easily replicated in your town.
Gillman's passion for her work is contagious. I encourage all grandparents with a personal or general interest in autism to join her network.