The Disability Movement Turns to Brains
May 9, 2004
By AMY HARMON, New York Times
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."