By Bonnie Malkin Gillman, Founder
I am frequently asked why I founded the Grandparent Autism Network. Frankly, it was in response to my personal experience and my desire to help my family.
As we know, the statistics are compelling. Autism is epidemic. A new case of autism is diagnosed nearly every 20 minutes in our country. One child in 88 has autism. When that “one child” is your grandchild, it has a profound impact on you. My grandson was almost two years old when he was diagnosed with autism. He was losing communication skills and had difficulty interacting socially.
I felt overwhelmed, confused and uninformed. I was even more distressed by new terminology that I didn’t fully understand. My children spoke about IEP’s, OT, PT, ABA and other interventions commonly recommended for children with autism. I was somewhat encouraged that these might be remedies that could “fix” my grandson’s autism.
I had lots of questions. Where were the autism service providers in Orange County and how could my grandson access them? What were his legal rights? What were the costs for services not provided to him? Were assistive technologies available to minimize his learning deficits? Were there special diets, medications and vitamins that could help? What research was underway that might potentially benefit him? What were realistic expectations for his future?
I soon learned that autism is a scientific enigma, causes are unknown and cures are not readily available. Responses to treatments vary because autism presents differently in every child. Research efforts are complicated, difficult and slow to be conclusive. Statistics are not available which indicate the best treatment options for each individual child. There is no universal consensus about education or treatment plans. School programs vary and parents must seek guidance about which ones will be most beneficial for their child. Sometimes, even professionals disagree about which interventions should be provided and a protocol may be based upon an uneasy compromise. Parents and grandparents may be limited in their choices by financial constraints. Frequently, some therapies are not supported by medical insurance, school districts or the Regional Center of Orange County.
My concern increased when I learned it is estimated 85% of marriages in families that have children with autism end in divorce. It is not unusual for families to lose their homes and sacrifice comfortable lifestyles in order to pay for support services. Because of this, many grandparents are housing and raising their grandchildren. Some have full legal responsibility for them. Formerly retired grandparents have returned to work so they can financially support special programs for their grandchildren. Many of us are needed to transport grandchildren to autism services after school when parents are working. Grandparents may be the only resource for respite care that parents have.
I sought resources for grandparents. There was no information on the Internet specifically for grandparents. I found many local support groups for parents in Orange County, but there were none exclusively for grandparents. Grandparents have a different perspective: Our children are challenged daily caring for their child with autism, meeting the needs of their typical children and just getting through a day without total exhaustion. Grandparents are concerned about their children, all of their grandchildren and every future generation that may be genetically predisposed to autism. I was determined to improve the quality of life for my grandson and our family and I knew that my concerns were universal.
In April 2006, I founded the Grandparent Autism Network, an all volunteer non-profit organization, which provides education and advocacy for autism and offers social opportunities for grandparents and their families. Presentations focus on autism and the medical, educational, legal and social issues that affect families. GAN does not charge fees for membership or meetings. GAN relies on financial support from the community. Speakers are well respected professionals. When presentations are exclusive to grandparents, time is scheduled for questions and answers. We do not advocate for specific autism interventions, we simply provide information about them.
As a network, grandparents frequently receive the best advice, tips and resources from each other. We share practical information from personal experiences with our grandchildren. Our membership has grown and there are many worthwhile projects underway. GAN invites your participation and support and welcomes grandparents in other communities to replicate our programs and projects.