Autism Vox

Christmases Past, Present and Yet to Come in Autismland

by Kristina Chew, PhD on December 24th, 2006

“A party all the time”: So Robert Hughes writes of life with his 21-year-old autistic son, Walker, in an article in the December 24th Chicago Tribune. Hughes is the author of Running with Walker: A Memoir. I posted earlier about another Christmas Eve op-ed by two autism fathers, A key achievement of the 109th Congress, by Michael O’Hanlon and Stuart Spielman (in my post A reason to be joyful). O’Hanlon and Spielman note that the passing of the Combating Autism Act (CAA) is cause for celebration in this holiday season, though it is a rather muted joy in the face of what they refer to as “America’s autism epidemic.”

Hughes’s holiday reflections on autism are tinged with a similar urgency while also emphasizing the constant rewards of life with Walker. Christmas time means one thing for sure in the Hughes household: Ebenezer Scrooge asking the Ghost of Christmas Yet To Come over and over

“Are these the shadows of the things that Will be, or are they shadows of the things that May be only?”

courtesy of The Muppet Christmas Carol video that Walker watches nearly every day from after Thanksgiving until the New Year arrives (and a bit after).

As the years race by, Scrooge’s question becomes more and more urgent. My wife, Ellen, and I are 57; Walker is 21. His autism is so severe that he can’t–so far–converse or do productive work. He can’t safely leave the house alone. He can’t tell a doctor what’s wrong when he feels sick.

What will happen to Walker when we’re gone? Or, in the blunt words of countless friends and acquaintances, “What’s your plan?” (It’s amazing how frequently we’re called upon to make casual conversation about our inevitable demise.)

Hughes and his wife are working “feverishly” to establish a group home for Walker and other kids like him; the sound of Scrooge’s words on the Muppet video ring in Hughes’s head and sound “more and more urgent as the years race by.” Raising autistic child seems like a juggling act does express a quiet sense of what can be seen as the “bittersweet” of raising an autistic child—total love mixed up with constant worries (perhaps of raising any child?): “… when Scrooge reaches that moment when he begs to know the future, I still cringe, if only a little,” Hughes writes in thinking about what the future—what future Christmases might hold—for Walker. Hughes is ultimately affirmative:

Walker is rewarding to live with. Contrary to a recent theory that says autistic people lack empathy, he’s the emotional barometer of the family.

So is my son Charlie indeed the emotional heart, the sweetheart core of our family.

I am back in my parents’ house in California for Christmas; they have renovated its kitchen and bathroom and, after we arrived on the plane last night, I kept walking up and down the smooth wood of the hallways, the old blue carpet gone; I kept turning and stopping short when I reached for a fork or a drink in the kitchen, as the cabinets, the stove, the refrigerator have all been moved. It it the same house, but different. A skylight in the bathroom brings in new light.

Just like life raising my autistic son Charlie has to my life, and as Walker so clearly has for so many Christmases past to Hughes—and as he will for so many more to come.

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POSTED IN: Adulthood, Autism Lit, Books, Family, Holidays, Parenting