Involuntary Disclosure · Aug 20, 05:00 PM

Dan Olmsted’s response to my letter of concern about the “outing of Donald T” wasn’t all that surprising. Anyone who’s followed the story of Valerie Plame (or any other inquiry into the ethics of newsgathering and public disclosure of sensitive personal information) might have anticipated a pretty mum reply. As is painfully evident from the Plame case, political agendas and “journalistic confidentiality” often trump respect for the personal privacy and even physical safety of the targets of a reporter’s investigations.

Here’s Mr. Olmsted’s minimally responsive response:

Good to hear from you again. Like other news organizations, we don’t go beyond our published articles in discussing our newsgathering techniques. I can tell you, however, that my reporting on this story followed accepted—and ethical—journalistic practices.

Thanks for your interest in The Age of Autism.

So many questions left unanswered! I replied:

Thank you for your reply.

Regardless of how you obtained Donald T’s identifying information, my other questions stand.

What an outrageous violation of the privacy of a civilian who obviously had no interest in sharing his life story with you. He is neither a public figure, nor accused of or involved with any crime—that is, except for the crime of having received an autism diagnosis over sixty years ago.

What could possibly move you to inflict such uninvited exposure on another human being? Does the fact that he is (or “was”) autistic make it acceptable?

Your two most recent articles provide fresh examples of the extent to which individuals with disabilities are treated like second-class citizens, fair game for objectification and exploitation by those intent on promoting a private agenda.

I’m particularly eager to hear from Dr. Craig Newschaffer, director of The Johns Hopkins University Center for Autism and Developmental Disabilities Epidemiology, to whom I cc’d my letters. Dr. Leo Kanner served as the Director of Child Psychiatry at Johns Hopkins from 1930 until his retirement in 1959, and it’s quite possible that all of his patient records are in the custody of Johns Hopkins. It’s reasonable to wonder whether Donald T’s identity might have been disclosed to Mr. Olmsted by a Johns Hopkins staff member, or by other professionals named in Dr. Kanner’s articles. If his identity was revealed by someone under professional obligation to honor patient confidentiality, such disclosure might very well constitute a violation of medical ethics, if not a violation of law.

The issues raised by Mr. Olmsted’s articles bring to mind the recent lawsuit filed by members of the Turcotte family of Northampton, Massachusetts, alleging defamation, invasion of privacy, emotional distress, and fraud by Augusten Burroughs, author of the bestselling memoir, Running With Scissors. According to a recent article in The Boston Globe,

the book so closely describes the late psychiatrist Rodolph H. Turcotte and his family—even giving directions to the family home—that everyone in the area knew who they were, subjecting them to humiliation and ridicule.

The article also discusses the subject of disclosure of medical information:

The usual reason to change names is to protect privacy. (Beacon Press Director Helene) Atwan said that some authors of nonfiction books on medical subjects—such as Beacon Press’s Danielle Ofri, who wrote Incidental Findings: Lessons From My Patients in the Art of Medicine—go to extraordinary lengths to hide the identity of their subjects. Ofri, said Atwan, “is meticulous in changing things so that no one will recognize her patients. She often asks them whether she can write about them, and in one case she gave a patient a manuscript to read. At the same time, she tries not to change details that would change the truth of the story.”

The decision of whether to disclose the existence of an invisible disability is a very personal one. Of course, parents must disclose a child’s disability in order to obtain appropriate educational services for that child; however, most states protect the privacy of children who benefit from special education programs, by restricting the dissemination of personal information to those who have a “need to know,” such as teachers, select administrators and support staff. Those with a “need to know” are generally prohibited from discussing a student’s disability without the express permission of parents. One would hope that parents might eventually consult the child to see how he or she feels about it.

Adults who require public or private disability benefits and services generally must disclose their diagnostic history and other personal details to the providers of those benefits and services. However, for those whose disability-related needs are less evident, the situation is not so clear-cut. Although many find it useful to be up-front about the nature of their difference—especially if that difference poses significant difficulties in their interpersonal relationships, in the college setting or in the workplace, and if those difficulties might be ameliorated by greater awareness of that person’s unique needs—others prefer to keep their self-understanding to themselves, or to engage in selective disclosure, reserving the knowledge of intimate details and vulnerabilities for those they trust.

Disclosure is not universally a good thing. Intolerance of cognitive difference is rampant. Although autism is currently defined as a developmental disability, too often it is inaccurately referred to as a “disease.” Although autistic citizens are no more prone to contagion, instability or violence than neurologically typical citizens, the popular media and certain misguided professionals contribute to the perpetuation of such misconceptions. Any condition that is associated with a “psychiatric diagnosis” can carry tremendous social stigma, and can result in the deprivation of an individual’s rights and freedoms.

According to Dr. Paula Caplan, author of They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal and instigator of the Call for Congressional Hearings About Psychiatric Diagnosis:

Few of the tens of millions of people who are diagnosed as mentally ill every year realize that simply getting a psychiatric label can cause them serious harm even many, many years down the road. The kinds of harm have included loss of the right to make decisions about one’s legal and medical affairs, loss of health insurance or skyhigh premiums, loss of child custody, and plummeting of self-confidence.

Harm can also take the form of direct harassment.
It is not unheard of for invisibly disabled adults to disclose a diagnosis hoping for greater understanding, or for their diagnosis to become public knowledge without their consent, and who then find themselves set upon by bullies who regard the existence of a specific disability as confirmation of their prejudices—“see, I told you he was nuts!”—and take advantage of their newfound knowledge in order to boost their self-esteem by wielding power over another. Bullies might become even more determined to humiliate and ostracize the disabled individual with provocations targeted to exploit their specific vulnerabilities. How many times have parents and teachers of autistic children witnessed the cruelty of other children, who might deliberately touch a child who is tactile defensive, or disrupt their environment in a way they know will “get their goat.”

Unfortunately, schoolyard bullies all too often grow into adulthood without shedding their bullying ways. And it’s fair to say that individuals with disabilities—whether visible or invisible—know this better than anyone else.

In short, there are plenty of very good reasons for an adult to keep their diagnostic history close to the vest. It seems that Mr. Olmsted either failed to consider the possibility that Donald T might have some very good reasons for not wanting to be interviewed about autism, or regarded those reasons as less compelling than the urge to keep the autism=poisoning hypothesis—and his own byline—in the public eye.

Comments


  1. ‘According to Dr. Paula Caplan, author of They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal and instigator of the Call for Congressional Hearings About Psychiatric Diagnosis:’

    She won’t allow comments, so no Congress for her!

    We’re all diagnosed with the disease – dreaming. Maybe she should tell people that. — anonymous    Aug 22, 01:49 PM    #

  2. Thank you, Kathleen!
    In light of your very timely article, I feel gravely concerned by the plans to create CDC-operated “Autism and Developmental Disorders Monitoring (ADDM) network” as stated in the article “An Autism ‘Epidemic’?”
    I understand that it will be done without autistic citizens’ consent (there has already been such an experiment underway in W.Virginia, where everyone dx’ed ASD has to be “reported” even against their will, similar to the sex offenders).
    What do you think? Just how this “tracking” will benefit autistic citizens, is there a way to opt out, and does anyone give a damn about possible repercussions? — scap_64    Aug 23, 02:33 PM    #

  3. I just re-read your letter & “Autism Epidemic?” article, and noticed that Dr. Craig Newschaffer, director of The Johns Hopkins University Center for Autism and Developmental Disabilities Epidemiology – the one who may have possession of Donald T’s medical records and possibly may have something to do with leaking his info to Dan Olmstead – is also the one involved with the development of this CDC-operated “Autism and Developmental Disorders Monitoring (ADDM) network”.

    Now my concern expressed above is getting even stronger. I’m really eager to see Dr Newschaffer’s response to this issue… — scap_64    Aug 23, 04:23 PM    #

  4. I was unaware of this monitoring effort, but would tend to regard it as a violation of citizens’ medical privacy, not to mention excessively paternalistic.

    Dr. Newschaffer has not responded to my letter; he could be on vacation (it’s August, after all), or might simply regard it as an “FYI.” In any event, I do plan to follow up. — Kathleen Seidel    Aug 24, 08:07 PM    #

  5. Thank you, Kathleen. I’m alarmed with it, too.
    Such effort is already underway in West Virginia, where every individual of any age newly diagnosed ASD has to be mandatorily reported to some statewide database – full personal information, address etc. – even against their will, and even if they go out-of-state for a dx.
    The state legislation which adopted this “pilot program” states that this information “is collected for research, but may be used for other purposes”.
    I’m real uncomfortable about all this…especially if this “pilot program” will be declared “a success” and as such may be extended nationwide. — scap_64    Aug 29, 03:41 PM    #