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A Day in the Life of a Family Coping with Autism

by Michael Giangregorio
February 18, 2009

The federal vaccine court ruled. The evidence had not legally convinced the court that the MMR vaccination with or without the preservative thimerosal caused autism in three test cases. And at the end of that day, for me and probably for the vast majority of the autism community, it was still like any day in the life of a family who has a child with autism. Perhaps today my seven year old son with autism called his mother MaMa, or didn't, or used his fork, or didn't. Perhaps today my nine year old “typical” son wished his little brother didn't have autism so they could play together.

That day, like all others, many families of the more than 4600 Long Island children with an autism spectrum disorder (ASD) struggled with their diagnosis, navigating their way through the onslaught of information that follows diagnosis. Some families, like mine, were immersed in their child's treatment and education, reinforcing therapies at home, because there is no stop to the continual parenting of your affected child. That day, I struggled with my own guilt. Having chosen the most appropriate state-funded educational setting for my son I had to sacrifice other therapies like physical and occupational therapies that would better help him learn to eat, dress and toilet independently. Other parents struggled with their compromises, balancing the availability of applied behavioral analysis with other therapies, or even the school off Long Island – because they are lacking locally – that could meet their child's most significant behavioral needs.

Families of those 4600 children, face continuous emotional exhaustion, putting all their energy and skill into meeting the needs of their child with autism as well as their other family members. Though our son is only seven, we must consider what will happen as he ages into an adult, and the lack of adult services and residential placements, the impact on his older brother when we are gone. We have just begun to assess the needs of adults with autism, and to research all avenues, develop federal and state legislation which will address those needs.

That day, like all others, personal financial expenses mounted toward the national estimated lifetime cost of $3.2 million of raising an individual with an ASD. With our regional cost-of-living double that of Albany and Atlanta, that $3.2 million estimate feels suspiciously conservative and our lifetime insurance caps and out-of-pocket limits loom. At the end of that day, my child – finally deemed Medicaid eligible – still can't access that system because of a bureaucratic morass. My family can't secure the few hours of respite services to which we are entitled and desperately need to get some sense of relief from our every-second-of-every-minute-of-every-day immersion in “autistic” family life.

On that day, my wife carried on the primary responsibilities of caring for both our sons, their education, their activities, networking with The Elija Foundation, The Genesis School and others. I carried on my impassioned advocacy. I'm a member of County Executive Suozzi's Autism Task Force. I want the task force to find ways to better coordinate services and simplify systems so more dollars go to providing care. I want efficiently-delivered, more effective services in this frightening economic climate. We know we must partner smarter to get the most from shrinking public budgets, as we try to get our heads around what's spent, how, and from what sources here in Nassau.

Regardless of public dollars spent, I know that it won't be enough. So on that day I worked still to raise funds for Autism Speaks because their dollars do so much – fund research advocate at the state and federal levels – support family services – provide community grants. With no single cause of autism, on that day, hundreds of scientists across the U.S. pursued legitimate, rigorous research, investigating all reasonable hypotheses on what causes autism, how to diagnosis it earlier, and discerning better treatment options. We know if we narrow our focus of research, we might miss something. That's a risk that we should not be willing to take.

At the end of that day, the vaccine court legal decisions didn't tell us anything new, didn't tell us what we didn't already know, didn't announce any new science or discovery. We know there are many cause of autism. We believe there are both genetic factors and environmental triggers but don't know which ones resulted in our son's autism. Nor do we know if our “typical” son is at risk for fathering a child with autism someday.

And at the end of that day, as on every other day, I kissed, held, and loved both of my children.

Michael Giangregorio, a Vice President of JP Morgan Chase, is Chair of Autism Speaks Long Island Executive Committee and Chair of the Leadership Council and Board Member of The Elija School. He lives in Merrick with wife Alison, and their sons ages 7 and 9, the younger of whom has autism.