19552 GW Mag 26_Final_singles - Flipbook - Page 37
Q: You often write about your daughter Isabel.
Why is it important to share your personal story?
A: In the media coverage I’ve seen of autism, there’s usually
a focus on numbers and rates. But we can sometimes lose
sight of the individual and how unique every individual is.
It is hard to talk about one person because you don’t want
to generalize to anybody else. But what I can say is that this
one person whom I know very well and her experiences
reflect some general patterns—even if there’s no one else in
the world exactly like her or like anybody else’s child.
I also have found over the years that the more we talk
with Isabel about autism, the more she starts to appreciate
that not only do many of her challenges come from this but
also many of her strengths. And she likes it when I write
about her. It makes her feel important and special.
Q: As a cultural anthropologist, how do you
view the current autism landscape?
A: As an anthropologist, I will say that we are at a moment
when autism is being defined less by deficits and more by
trying to identify what the challenges and the possibilities
are. And that is helping people lead meaningful lives.
I’d say one aspect of the current landscape is turning
more attention to adults, a change from the long-standing
focus on children. When you see adults who are diagnosed
for the first time with autism at age 40 or 50 or 60, you have
to ask yourself why. They aren’t getting, say, school services.
But it helps them have a non-stigmatizing framework to
make sense of themselves. Any kind of classification or label
is only good if it’s useful—whether that’s to drive a service
for a child in school or to make a 50-year-old person say,
“Now I understand why I’ve always felt awkward or had
difficulty understanding people’s social communication.”
Q: Is it very different to hear an autism diagnosis now
than it was when you heard your daughter’s in the ’90s?
A: When my daughter was young, autism was such a rarely
diagnosed condition. Today, when you hear a diagnosis, you
have company. There are a lot of other people who have heard
that diagnosis, and there’s a lot of support and understanding
out there. If you use the word “autism” today, people know
what you mean—or at least they know the questions to ask.
Q: In a New York Times op-ed, you wrote, “The
neurobiology is too complex for easy explanations.”
What’s the mistake in seeking immediate answers?
A: Brains are really, really complicated. Clinicians have a
very tough time treating neurological and neurodegenerative
diseases because the neurological architecture is too complex.
We know that more than 100 genes are associated with
autism, and they interact with one another and with each
individuals’ environments and experiences. If [a cure or
cause were] a simple thing, people would have discovered it
a long time ago. Thousands and thousands of people are
working on it. But it’s not something you’re going to find at
a moment’s notice. Because [autism] is multi-factorial, the
search for any kind of singular autism would be misguided.
I also want to emphasize something that rarely gets
mentioned. Not only does good ethical science take a long
time, but science that is applicable to children takes even
longer. You take special precautions to make sure that
research on children is ethical and children aren’t exposed to
any harm. We can’t expect there to be research breakthroughs
that happen overnight.
Q: As a father, are you optimistic about where we are today
in our approach to autism?
“We are at a moment when autism is
being defined less by deficits and more
by trying to identify what the challenges
and the possibilities are. And that is
helping people lead meaningful lives.”
A: I’m deeply gratified every day by my daughter, whom I
adore. When I see people with a newly diagnosed child with
autism, I think about how things are so much better now.
I’m almost jealous in a way. I wish that there’d been this kind
of awareness, that there’d been so much understanding
about autism when my daughter was 3 or 4 and people
stared at me on the street or didn’t think I should bring her
to a restaurant. I think a lot about how far we’ve come.
— ROY RICHARD GRINKER, PROFESSOR OF
ANTHROPOLOGY AND INTERNATIONAL AFFAIRS
GW Arts & Sciences | RESEARCH & LEARNING | 37
