Illustration by Juliette Borda
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George’s Place
By Carolyn See, September & October 2004
Autism swept him off to a secret world. Could his grandmother find a way to meet him halfway?
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George, my grandson, is one of those little boys you can't get enough
of. He's slender and blond, fine-boned, and dead-on beautiful. There was a
time when he couldn't get enough of us, either. He chatted, he paid
attention, and whatever the current joke was, he got it.
Then, when he was around two, something changed. He began to love watching
the eternal curves of a spinning electric fan. He loved the play of his own
fingers in front of his eyes. His glance shifted over to the middle distance.
He wouldn't look us in the eye. He pretty much decided against talking.
The Thanksgiving of the year he turned three, we couldn't ignore his
behavior anymore. During dinner, a big friendly affair for our family, George
ran through the rooms, charting his own course, occasionally flopping his hands
in front of his face, laughing delightedly. He did this for hours, all the
while seemingly oblivious to the rest of us.
The family had known for a long time that something was not
"right" with George. We all kept saying, or maybe it was more hoping,
that it was nothing. Because wasn't George so endearing? And he so loved to
laugh. But he did make those "guah-guah" noises. He did flap his
hands. Then, a short time after that dinner, someone at George's daycare
said the word. Autistic.
I think my daughter knew before her husband. But he was the first to just
say it. "There's something wrong with our son." That's when
we all finally allowed ourselves to admit it. There was something wrong. But
what?
It's extremely difficult to get a diagnosis of autism. Doctors don't
want to bring up the subject; they don't want to be the ones to give the
bad news. So they gave George hearing tests and IQ tests, EEGs, and more
appointments, and more tests, until it was confirmed: my beautiful grandson was
autistic.
George began to love watching the eternal curves of a
spinning fan. His glance shifted to the middle distance.
After the diagnosis, we had so many questions. And no one could answer them.
I had done my research, but that just brought up more questions. Autism was
first recognized in 1943. From the 1950s to the 1960s, doctors blamed the
mothers. They were accused, because of a theory promoted by developmental
psychologist Bruno Bettelheim, of withholding love from their children. (If
that man weren't already dead, I swear I'd kill him, then sentence him
to ten thousand years in hell for each tear he made those innocent mothers
shed.)
Today, there is still no clear explanation for what causes autism. But one
school of thought suggests early intervention is a child's best hope. Many
behaviorists recommend 40 hours a week of behavioral therapy, minimum. They say
if you don't get to these kids by age six, they'll be lost to you
forever.
That's easier said than done. The first symptoms often don't appear
until the child is around 18 months, and it usually takes at least another year
for people to figure out what's going on. Add to that a regrettable lack of
specialists and therapists (the only ones who can make the diagnosis), and the
years are lost. Meanwhile, there's your beautiful grandson, running
aimlessly, not talking, not meeting your eye.
Once the final diagnosis is made, there's the question of education.
Most states, in theory anyway, are committed to giving each and every child an
appropriate education, according to his or her needs. They're supposed to
provide individualized education for autistic or otherwise disabled children.
State-funded organizations called regional centers (in most states) fill this
function. In many cases, however, they don't have enough funds to do it
properly. My daughter was tormented by the fear that George would be dumped,
warehoused in a classroom full of deeply troubled and disabled kids, and that
the time when he should be getting treatment would be frittered away.
Everything depended on the school's mandatory Individual Education Plan
(IEP). We had been forewarned that the center would want to spend as little
money as possible, and we were prepared.
To Learn More on Autism
Autism Society of
America
800-328-8476
National Alliance for Autism Research
888-777-6227
The Autism
Coalition
914-935-1462
Families for Early Autism Treatment
916-843-1536
Our first formal IEP meeting was agony. Four of us—my daughter, her
husband, her sister, and I—attended.
There was a physical therapist who had evaluated George. A psychologist from
somewhere. A couple of other women who had reports on George, and a speech
therapist. Our family had brought a tape recorder. Notes were taken. Tears
flowed.
We listened as they read all of their reports: George had almost no speech,
a vocabulary of about a hundred words, most of which he hated to use. He had no
muscle tone. He was skinny as a rail. He couldn't or wouldn't take
directions. After four hours of passionate argument, we managed to get some of
what George needed. He ended up in a public special-ed nursery-school
class.
As I look back on that terrible time now, I see that—in addition to
fighting for what we knew George needed—we were doing the only thing we
could have been doing, playing our parts on cue: my daughter crying a
mother's tears, her husband being as masculine and stoic as he could, my
older daughter trying to maintain some dignity and control on behalf of us all
(as she always does), and me with a grandmotherly smile plastered on my face,
because things were going to be fine. Weren't they?
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