Knowing that I have a
21-year-old son with autism, a colleague turned to me to learn the
meaning of the latest statistics on autistic births.
"What does
this number, 1 in 150 births, really mean?" my friend asked, citing a
study from the American Academy of Pediatrics aimed at identifying
autistic symptoms early so intervention can begin. "Aren't many of them
high-functioning enough to live successfully on their own?"
I
answered that, yes, many of those children born with autism will
someday be self-sufficient. But all—from the lowest-functioning, such
as my son, Walker, to the highest-functioning—will need help. Many will
need plenty of it.
And the challenge is worsening. Only a few
years ago, according to the Centers for Disease Control and Prevention,
the rate of autistic births was 1 in 166. Today, already, the number
among boys is 1 in 94.
The country is starting to grasp the need
for an aggressive search for a cure. But it has hardly begun to grasp
the staggering dearth of group homes and vocational training. It has
hardly faced the question of how and where the whole exploding
population of autistic people will live.
Beyond that, there is an emotional, seldom-discussed meaning to the 1
in 150 statistic.
It
means that the chances are growing alarmingly that my friend or someone
he knows will one day have an autistic child. And as an old veteran of
the autism war, let me tell you what that means.
It means that a
guy who used to be the most sociable fellow in the world, who could
always be counted on to step out for a cup of coffee, show up for a
dinner party or run out for lunch will nearly vanish two years after
the child is born.
"Gotta get home. My wife will be going crazy," or some such phrase will
pop up with regularity.
It means your friend, who used to be chatty about his family, will
pretty much clam up.
He'll
say, in response to your friendly question about how things are going:
"Oh, it's been pretty wild." (Stoic understatement for, "It's been
indescribably, grindingly tense.")
Or he'll say, "It's been bad." (Stoic code for "The horror! The
horror!").
It
means your colleague will sometimes feel so proud of his parenting
skill that he would like to brag but doesn't for fear of making you
feel inadequate. He may show up for work after having been up all night
with his screaming autistic son, but he's happy because:
• He never shook his fist at the boy.
• He dreamed up several different and creative but ultimately futile ways to distract and interest his child, always speaking in soft, firm and reassuring tones even though the kid was running through the house, shouting, biting him and leaping up and down.
He knows you and
90 percent of other parents couldn't have handled the riot as well as
he, so he feels, this morning at least, like a paragon of parenting.
It
means, though, that the next morning when your friend arrives at work,
he feels as though he belongs in jail. He had spent a second night up
with his child speaking in soft, firm, reassuring tones—that is, until
he lost it, hit his kid, yelled at his wife, sobbed afterward, and so
is now certain he's the worst sort of monster dad in existence.
He
has seen the best and the worst of himself, has been St. Francis and
Vlad the Impaler in such quick succession that he's dizzy with
sickening self-discovery.
It means that even though he knows his
boy is sweet, intelligent, empathetic and crazy about the people in his
life, few will imagine he is any of these things. Many will assume that
the young man is "lost in a world of his own," and so they will not do
the hard work of befriending him.
These people have read
misleading accounts of autistic people, of how "they" are robotic,
coldly gifted or retarded, uncaring about others and uninterested in
the world around them. Sometimes prominent "experts" will make these
claims even though any parent knows, with deep certainty, that they are
false.
It means that though your friend has seen the dark side, he has seen
the very bright side too.
Having
a child with autism means coming into contact with some of the finest
people in the world: the neurologist who thinks beyond the medical
fringe and holds out hope; the therapist who gets down on the floor
with the boy, rolls around with him and brings out the best in him; the
teacher who sees what the father sees in the son because, with an open
mind and heart, she finds the real kid behind autism's curtain.
One
in 150 means that your friend has joined a select community of parents
whose love for their children brings hard-won insight.
He knows something that the writer Jean Vanier expressed so well:
"Those
who have been put aside and so often despised or not seen as whole,
when one becomes their friend, in some mysterious way, they heal us."
Robert Hughes teaches English at Truman College and is
the author of "Running With Walker: a Memoir."
hughesredw@aol.com