The Disability Movement Turns to Brains
May 9, 2004
By AMY HARMON
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
Last month, Ms. Clark helped start an Internet site called
the Autistic Adults Picture project
(http://www.isn.net/~jypsy/AuSpin/a2p2.htm), 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
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
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
"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
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
On Internet sites like the Institute for the Study of the
Neurologically Typical (isnt.autistics.org), 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."