Autistic Objects of Curiosity · 2005-08-18 20:00

Dan Olmsted is digging for autistic artifacts—or should we call them people?

Label a person “autistic,” and in all too many eyes, that person is transformed from a human being with his or her own thoughts, feelings, preferences, conscience, and sense of personal integrity, into an object of curiosity, fair game for speculation and dissection by those whose musings lead them into the territory of The Mysterious Other.

One such speculator is UPI journalist Dan Olmsted, who has recently achieved some notoriety for his series, The Age of Autism, published in The Washington Times. The flavor of Mr. Olmsted’s inquiry and his interpretations of evidence mirror almost exactly the arguments of those who contend that autism is almost invariably a consequence of mercury poisoning. His criticism of other journalists who question the validity of the autism-poisoning crusaders’ views and the appropriateness of their tactics has been so passionate that one might think that Mr. Olmsted, like David Kirby, serves the crusade as a public relations representative rather than a journalist. Indeed, he published two separate articles criticizing The New York Times for Gardiner Harris’ and Anahad O’Connor’s June 25 analysis of the vaccine controversy, On Autism’s Cause, It’s Parents vs. Research.

Although Mr. Olmsted occasionally features letters from parents, researchers and autistic individuals who do not share the conviction that all autistics are “poisoned,” readers already familiar with the clinical literature and popular discourse about autism are likely to notice his consistent tendency to spotlight informants (often anonymous) who insist that autism is an iatrogenic injury new to the twentieth century, and who deny the possibility that independently functioning adults on the autistic spectrum exist in more than insignificant numbers.

However, in the past decade, many autistic spectrum adults have published insightful, lively and illuminating essays in books and on the Internet, which now serves as a significant means of communication and social interaction. In addition to those autists whose lives and creative works have been highlighted in their own words and in the works of such authors as Oliver Sacks, one can also find candidates for the autistic distinction amongst many memorably eccentric, stunningly original, technically adept, artistically talented, brilliantly focused monotropic members of the human community.

In spite of the wealth of possibilities for investigation and exploration, Mr. Olmsted seems content to accept the assertions of those who would dismiss most living adults who claim to reside on the autistic spectrum as imposters, and to focus on individuals whose childhood behaviors have been described in the clinical literature of Western psychology.

It is reasonable to assume that many individuals on the autistic spectrum have no desire to expose themselves to analysis, and prefer to be allowed to live their lives in peace. Those who in childhood were subjected to professional scrutiny and clinical experimentation, might in adulthood be particularly inclined to choose freedom from such scrutiny.

Fortunately, most responsible researchers mask the identity of their human subjects when preparing publicly-available case reports about them. One can read such reports—as flawed and culture-bound as they might be—and gain a great deal of knowledge about autism without simultaneously invading the privacy of any individual.

The late Dr. Leo Kanner of The Johns Hopkins University is renowned for his authorship of the seminal 1944 study of a phenomenon which he had just begun to recognize, and which he christened “autism.” Mr. Olmsted first discussed one of Dr. Kanner’s patients, “Donald T,” in his article, The Age of Autism: Donald T and Fritz V. The information in the article was limited to that originally provided by Dr. Kanner, who appropriately identified his patients only by their first name and last initial. Although one might have disputed Mr. Olmsted’s speculations and conclusions about Dr. Kanner’s patients, one could hardly criticize him for considering a significant piece of the clinical literature of autism, as many have done before him.

Although patient confidentiality should not be subject to a statute of limitations, the curious Mr. Olmsted succeeded in obtaining identifying information for Donald T. Mr. Olmsted then requested an interview—a request to which Donald T did not respond.

Dan Olmsted’s two most recent articles in the “Age of Autism” series offer a chilling example of the fact that if you’re autistic, and if you choose not to communicate with an inquisitive reporter, a man on a mission may yet expose your life story to the world, publicly speculate about your personal characteristics and medical history, and feel exempt from the ethical obligation of asking your permission to do so.

I wrote the following letter to Dan Olmsted last night.

From: Kathleen Seidel
To: Dan Olmsted
Sent: Wednesday, August 17, 2005 9:41 PM
Subject: Journalistic & Medical Ethics

Dear Mr. Olmsted,

Re your recent articles about “Donald T,”

The Age of Autism: Case 1 revisited
and
The Age of Autism: March of the experts

How did you determine Donald T’s identity? Who provided you with his exact name? Was that person a medical professional, or anyone else bound to a code of professional ethics?

If Donald T has not responded to your request for an interview, has it occurred to you that he might value his privacy? If Donald T’s brother “was clearly unfamiliar with the current debate,” did you reveal to him the nature of your ongoing participation in that debate? Does his brother’s willingness to divulge personal details about him constitute sufficient license for you to then divulge those details to the world?

Why are you publicly discussing and speculating about Donald T’s medical condition and psychological state without his consent? You wrote that you “did not wish to intrude on his privacy,” but your articles constitute exactly such an intrusion. Given all the personal details that you provided (state of residence, educational status, employment status, fraternal organizations, home ownership, possessions and pastimes, recent travel itinerary, father’s alma mater and profession, brother’s profession and the location of his office), it is likely that many long-time residents of Donald T’s hometown could easily identify the subject of your articles.

Who is the doctor who speculated that “it sounds like he moved right off the spectrum”? It is an ethical violation for a medical or counseling professional to offer an opinion about a person’s diagnostic status without their express consent, especially if they do not have a professional relationship with that person.

Who is the “correspondent” who “summarized this sequence” regarding a person he or she had probably never met?

Has it ever occurred to you that a person might remain autistic even after the alleviation of physical problems that result in autistically-typical reactions to stress—otherwise known as the “most disabling autistic traits”?

How many more of Dr. Kanner’s patients do you have in your sights?

Your articles about Donald T raise significant questions regarding journalistic and medical ethics.

Sincerely,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring
http://www.neurodiversity.com

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