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OPINIONS / ETHICS |
By Colleen Clements
A young boy's story appears in a popular
magazine for parents. He and his brother have been diagnosed with Asperger's
syndrome. His diagnosis was made because he was a bright boy, had an intense
interest in astronomy and space travel, was engrossed in Star Wars games and
toys, liked to lecture on topics that interested him to his primary school
companions, didn't seem very empathic, was bored with his "peers" and
began to show the stress of his social isolation. He was articulate (talked too
much and too fast), didn't have "play dates" (the latest fad in the
affluent suburbs where even child's play is scheduled formally), didn't
participate well in activities with his peers (who weren't really his peers in
terms of developmental stage), and didn't like to look people in the eye. On
that basis—and because his one brother also shared the diagnosis and his other
brother had been labelled autistic—this little boy, while still in preschool,
was given the permanent diagnosis of a neurological disease.
Some time ago, bioethics was critical of the
"disease" of masturbation, and of the discrimination involved in
diagnosis of hysteria. But it hasn't been so forthright in opposing harm done
to some schoolchildren.
Asperger's syndrome, conservatively is diagnosed four times
as often in boys as in girls. Its symptoms describe the typical nature of boys
rather than girls: social skills not as quickly developed or sensitive as
girls, "disruptive" or aggressive behaviour used for problem-solving
more often than girls and reluctance to express inner feelings in public in
contrast to girls. The norm used to distinguish Asperger's symptoms is a
feminine, not masculine, norm.
Asperger's syndrome was delineated as part of an autism
complex of neurological diseases by Dr. Hans Asperger in 1944. Autism is a vast
wastebasket of syndromic disease classification, and Asperger's addition has
done little to improve the science.
As with attention deficit and hyperactivity disorder,
probably a small number of children actually suffer from neurological
abnormality who might fit a more scientific, more etiologically informed and
biochemically tested classification. The public school systems, however, have
rapidly increased the diagnosis of such "diseases" in an effort to
convert ranges of performance into disease categories rather than genetic
differences, to substitute chemical manipulation and medical pathologizing for
competent classroom control and learning, and to believe in therapeutic
optimism about any problem.
Among the wrongs here, to the sad use of misdiagnosis to
cover for institutional incompetence, we have to add distortion of the
scientific method for social purposes and refusal to tolerate superior traits
in individuals. Asperger's is a good example of this.
The Centre for the Study of Asperger Syndrome provides some
of the evidence for this on its Web site. Having some inkling that part of the
problem may be failure to place a child within his or her true peer group,
rather than the existence of a neurological disease, the centre recommends that
children be placed at their academic level of performance and not their
chronological level. That makes basic common sense. We would hardly give a
medical diagnosis to an eight-year-old for failing to relate well socially with
an eight-week-old.
The centre also admits that adults who were diagnosed with
Asperger's go on to lead productive lives, as college professors, dentists,
programmers and, I suspect, some physicians. As adults, of course, they can
finally find some peers, although it is hard when one is extremely intelligent,
as the autobiographies of great men and women in the sciences and arts
proclaim. Were all these individuals actually suffering from Asperger's?
And I now have to consider that my whole family might be
diagnosed as Asperger's. After all, we have three college professors, one
geologist, one paleontologist, one forest ranger, one science teacher of gifted
students, one English teacher-to-be, one interested in biostatistics, one
medical technologist and a new crop of grandchildren who are
"obsessed" with complex topics before kindergarten.
So let's look at one of the key symptoms: high intelligence.
Asperger's children are supposed to have lucid speech before four years of age
and to have IQs above normal. These traits are pathologized somewhat by calling
the speech sometimes repetitive, flat and revolving around the self. The high
intelligence is pathologized by calling it obsessive (again, physicians beware,
since so many physicians are obsessive), and by finding forms of dyslexia
present (whoops! Edward O. Wilson and my entire family have a form of dyslexia
that does not interfere with reading ability but does allow one to assume any
perspective in perceiving something). These bright children are supposed to
lack common sense, which may only mean that they see things more clearly than
even their teachers or neurologists do. What would be said about one of my
grandson's answers to a kindergarten teacher's question about what was a big
thing? He told her, the whole universe was a big thing. Was that lack of common
sense? Or perhaps concrete thinking?
Although our cultures are willing to agree that some people
exhibit superior physical abilities, they are reluctant to do that for
intelligence. Asperger's syndrome may be just a fancy way of calling the class
genius a geek or freak.
There are some physical signs of Asperger's, but they too are
vague. Physical movements are described as clumsy or awkward, bringing us back
to the "geek" label. There is supposed to be self-stimulation that is
atypical, again a judgment that is hard to quantify or define.
But the saddest symptoms are the social symptoms. These
children are supposed to show socially inappropriate reciprocal interactions.
They are "socially odd." Having had their inner selves so negatively
judged, it is not surprising that these children have a great deal of anxiety,
fear and self-doubt. We have confirmed their fear that their real differences
will be negatively judged and rejected. We have created their self-doubt by
labelling them as having a disease and as disabled—and worse, by refusing to
love their difference, which after all, is themselves. What happens next is
predictable. They become desperate to be included by their peers, to please, to
appease—anything to be accepted and loved and honoured for what they are. In
order to be accepted by society, they would have to accept a label of disabled
or diseased. It is amazing, actually, that these children do so well as adults,
considering how we have battered their inner core of being in order to break
them down to fit into the "average" social "norm."
Many Asperger's children are saved by being home-schooled,
and go on successfully to university. Being a member of the social in-crowd or
a social butterfly is not always the goal for human beings. We may be called to
greater things than that. All of us are probably greater than that. Our peer
group should not be our value system. That is not a definition of health or of
the norm.
Neurological diseases are sometimes easy to classify,
sometimes very difficult. The scientific method finally straightened out
tertiary syphilis, removing it from the dementia category. But soft syndromes
like Asperger's may not be so easily rectified, especially if we look at the
history of ADHD. We might even lose the scientific method in our rush to
embrace social and political conventions.
—Colleen Clements is clinical associate professor of psychiatry at the
University of Rochester, Rochester, N.Y.