By Ann Bauer
Sunday, July 20, 2008
There is a family down the street whom I envy.
I've never met them. They live in a two-story white house -- a mother, a father and their grown son. Outside is a trimmed yard with rosebushes and a wooden arbor where the men work on weekends.
The dad, who looks to be near 60, pushes a wheelbarrow or carries a set of shears. The son could be 20 -- the age of my oldest child -- or 40. He is a short, egg-shaped man. He walks behind his father, carrying large shovels and bags of dirt and the like. He works tirelessly, from what I can see, and talks most of the time.
On weekdays, when I am taking my youngest child to school, I sometimes see him holding a cloth lunch bag and boarding a small bus. I imagine that at work he is as cheerful and productive as he appears to be with his father on Sunday afternoons.
The fact that this man has Down syndrome is clear. He has the telltale almond-shaped eyes and short limbs. I know that he could suffer from any number of medical conditions, from heart defects to epilepsy, and that his cognitive functioning is probably impaired.
Still, I envy his parents.
My grown son has autism. And while I wouldn't trade him -- the person to whom I gave birth -- for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we're flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance. In all these areas, family members of those with Down syndrome have figured out a cohesive, workable system of support.
They have some advantages that we don't. First, Down syndrome is quantifiable: There is a definitive diagnosis and a general similarity of experience. It doesn't have the random diversity of autism, which spans a range from nonverbal to simply rigid and from low IQ to extremely high. Second, those parents have mobilized. Parents of children and adults with Down syndrome routinely trade information and assist one another in accessing care.
Third -- and most important -- they have carved out a place in society for their children. It's a hackneyed myth that people with Down syndrome are uniformly happy, but it is true that they have the capacity for joy and that their community has ensured they have a breadth of options -- career, marriage, dignity.
This is what we who love people with autism must do.
My son is flailing in a system that doesn't know how to deal with him. I admit I'm of little help. He doesn't look different from other 20-year-olds, and he happens to be of normal intelligence. But socially, he is as lost as he was at age 4, when he withdrew, quit speaking and stared for hours at his own hand. Over the past year, he's been placed in a series of group homes for people with mental retardation or psychosis. None has been right.
His senses are overly acute, which means he experiences the world largely as pain. Noises, colors, smells -- they're all too vivid. He is prone to sleeping his days away rather than working in the yard. He likes dark rooms and movies and has the urge to date but cannot work up the nerve to speak to girls, much less ask one out.
At this time there are no resources, the county social worker tells me. My son doesn't fit in any of the current residences, jobs programs or schools. There are not enough "waivers" available to provide appropriate housing or treatment for the deluge of young people like him. Worse, the community of parents dealing with autism has splintered over philosophical issues, such as causal factors and wholesale acceptance vs. finding a cure.
Twenty years from now, I hope that things will be different -- that we'll have learned to cooperate.
Today, more than 90 percent of fetuses tested and found to have Down syndrome are aborted. The power of their parent group is shrinking, as is the world's mosaic of human form.
I'd like to knock on my neighbors' door and ask them how it's done. Tell me the secret to sharing your home with a grown child, I would say, while allowing him the space to become an adult with his own life. Show me how to create unity among families. I may do this yet.
Someone has to talk to those wise parents before they die out, or I fear our children with autism will continue to wander through a world where they never fit.
Ann Bauer, a writer in Minnesota, is the author of the novel "A Wild Ride Up the Cupboards."