The
Disability Movement Turns to Brains
by Amy Harmon, New York Times, May 9, 2004
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No sooner was
Peter Alan Harper, 53, given the diagnosis of attention deficit
disorder last year than some of his family members began rolling
their eyes.
To him, the diagnosis explained the sense of disorganization
that caused him to lose track of projects and kept him from
completing even minor personal chores like reading his mail. But
to others, said Mr. Harper, a retired journalist in Manhattan,
it seems like one more excuse for his inability to "take care of
business."
He didn't care. "The thing about A.D.D. is how much it affects
your self-esteem," Mr. Harper said. "I had always thought of
myself as someone who didn't finish things. Knowing why is such
a relief."
As the number of Americans with brain disorders grows, so has
skepticism toward the grab bag of syndromes they are being
tagged with, from A.D.D. to Asperger's to bipolar I, II or III.
But in a new kind of disabilities movement, many of those who
deviate from the shrinking subset of neurologically "normal"
want tolerance, not just of their diagnoses, but of their
behavioral quirks. They say brain differences, like body
differences, should be embraced, and argue for an acceptance of
"neurodiversity."
And as psychiatrists and neurologists uncover an ever-wider
variety of brain wiring, the norm, many agree, may increasingly
be deviance.
"We want respect for our way of being," said Camille Clark, an
art history graduate student at the University of California at
Davis who has Asperger's syndrome, a form of autism often marked
by an intense interest in a single subject. "Some of us will
talk too long about washing machines or square numbers, but you
don't have to hate us for it."
Last month, Ms. Clark helped start an Internet site called the
Autistic Adults Picture project
where dozens of
people list their professions and obsessions next to a
photograph. The idea is to show normal-looking people, whose
peculiarities stem from their brain wiring - and who deserve
compassion rather than exasperation.
Overcoming the human suspicion of oddity will be hard, the more
so because the biological basis of many brain disorders can't be
easily verified. Usually, all anyone has to go on is behavior.
"It's a tough one," wrote one participant in an online
discussion of Asperger's syndrome. "Was that woman," he asked,
just "unwilling to think about others' feelings, not caring
about whether she's boring me with the minute details of her
breakfast wrap?" Or, he asked, was she "really truly incapable
of adapting herself to social mores?"
Science is beginning to clear up such questions, said Dr.
Antonio Damasio, a neurologist at the University of Iowa Medical
Center, by identifying distinct brain patterns and connecting
them to behavior. But, he added, only society can decide whether
to accommodate the differences. "What all of our efforts in
neuroscience are demonstrating is that you have many peculiar
ways of arranging a human brain and there are all sorts of
varieties of creative, successful human beings," Dr. Damasio
said. "For a while it is going to be a rather relentless process
as there are more and more discoveries of people that have
something that could be called a defect and yet have immense
talents in one way or another."
For example, when adults with A.D.D. look at the word "yellow"
written in blue and are asked what the color is and then what
the word is, they use an entirely different part of the brain
than a normal adult. And when people with Asperger's look at
faces, they use a part of the brain typically engaged when
looking at objects.
Dr. Damasio and others compare the shifting awareness about
brain function to the broader conception of intelligence that
has evolved over the last two decades, driven in part by the
theory of Howard Gardner, a Harvard education professor, that
children who don't excel in "traditional" intelligence - the
manipulation of words and numbers - may shine in other areas
such as spatial reasoning or human relations.
Skeptics, like Mr. Harper's family, and some medical
professionals argue that clinicians are too quick to hand out a
diagnosis to anyone who walks through the door. In an effort to
rein in the number of diagnoses, the American Psychiatric
Association imposed a new criterion in its latest edition of the
Diagnostic Statistical Manual: an individual must now suffer
from "impairment" to qualify as having one of its 220
psychological disorders. "We're not adequately differentiating
normal from pathological if we just use the criteria that are in
the syndrome definitions," said Dr. Darrel A. Regier, director
of research for the American Psychiatric Association.
The definition of "impairment," however, remains vague. And many
clinicians chafe at the manual's rigid diagnostic criteria.
"Say the diagnostic category for a depressive disorder is four
out of eight symptoms, and you have two," said Dr. John Ratey, a
Harvard University psychiatrist. "What are you, just miserable?"
For patients, being given a name and a biological basis for
their difficulties represents a shift from a "moral diagnosis"
that centers on shame, to a medical one, said Dr. Ratey, who is
the author of "Shadow Syndromes," which argues that virtually
all people have brain differences they need to be aware of to
help guide them through life.
But the most humane approach, some experts argue, may lie in
redefining the expanding set of syndromes as differences rather
than diagnoses.
"We're doing a service on the one hand by describing many more
of these conditions and inviting people to understand themselves
better," said Dr. Edward Hallowell, a leading authority on A.D.D.
"But when we pathologize it we scare them and make them not want
to have any part of it. I think of these as traits, not
disorders."
Knowing you are a mild depressive, for instance, could induce
you to exercise often. A bipolar person could adapt their lives
to fit their mood swings, or treat them with drugs if that works
better. And a neurologically tolerant society would try to
accommodate as well as understand behavior that remained
aberrant.
Others take a more pragmatic approach to the newly available
information about how the brain works. In his recent book, "Mind
Wide Open: Your Brain and the Neuroscience of Everyday Life"
(Scribner), Steven Johnson undergoes a barrage of neurological
tests to learn more about his own quirks. "For a long time when
scientists talked about the brain it was, 'the human brain
functions this way,' " Mr. Johnson said. "But the great promise
of this moment is that we can begin to understand what makes us
different as well as what makes us all alike. Enough about the
human race - I want to hear about me."
Mr. Johnson, who found himself to be better at language than
visual processing, said his wife used to get annoyed when he
couldn't recall details about a house they were planning to
renovate. Now, he says, they understand that she is better at
visual tasks, and he tries harder to compensate.
Many of those who advocate greater tolerance for brain quirks
caution that it should not serve as an excuse for individuals to
behave inappropriately. "It's not a get-out-of-jail-free card,"
Dr. Ratey said. "It's an awareness of what you need to do or
accept about yourself and then decide, 'Do I want to fit in more
or not?' " The answer, increasingly, may be "not." Many A.D.D.
adults say their condition contributes to their creativity, and
some with Asperger's are now critiquing those they call "neurotypicals."
On Internet sites like the Institute for the Study of the
Neurologically Typical autistics satirize the cultural
fascination with deviance. "Neurotypical individuals," states
the Web site, "find it difficult to be alone" and "are often
intolerant of seemingly minor differences in others."
"Tragically," it adds, "as many as 9,625 out of every 10,000
individuals may be neurotypical."
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