The Real Town Hall

This page has been created to serve as a public-access repository for any and all of those posts which NYU/CSC saw fit to block from appearing in their “Town Hall Meeting.” The purpose of this repository is to:

1) give voice to those many concerns and questions which were blocked by NYU/CSC,

2) show the stark contrast between those posts which were blocked, and those which were allowed by NYU/CSC,

3) show that the “open forum” that NYU/CSC promised, and still claims to have provided, was in fact nothing of the sort.

NOTE: These posts appear ONLY by explicit permission of their original authors. YOU CANNOT BE SUED FOR AGREEING TO THE PUBLICATION OF YOUR OWN WORDS. Any replies from NYU/CSC to those same original authors may also be posted, with the express permission of the aforementioned original authors. YOU CANNOT BE SUED FOR AGREEING TO THE PUBLICATION OF NYU/CSC’s REPLIES, PUBLIC OR PRIVATE, TO YOUR OWN QUESTIONS OR COMMENTS. If you are the intended recipient of their reply, the deliberately intimidating legalese NYU/CSC appends to your e-mail IS NOT BINDING ON YOU — its only legitimate function is to scare off people who have no business reading it without your permission — which obviously does not apply to a message you attempted to post in an ostensibly public forum.

The views expressed in these posts by the original authors, or in replies by NYU/CSC, may or may not reflect the personal views of the maintainer(s) of this weblog. Obviously.

And now, we bring you THE POSTS, in no particular order:



dkmnow:

[The first of these was in reference to their highly controversial “Ransom Notes” campaign, which I discussed in an earlier post on this blog. The third was actually copied directly from that same post. None of my comments/questions were permitted to appear in the forum.]

1) Dr. K., In future public service campaigns, what steps will you be taking to ensure that the language/imagery you use will not inadvertently lead to further emotional harm, inflicted on a day-to-day basis via the attitudes which propagate throughout society, upon those you wish to help?

2) Dr. K., Do you believe that Autistic adults have anything useful to contribute to clinical/professional understanding of what it means to be an Autistic child? And what about other psychiatric conditions? Are the personal experiences of any such adults to be regarded as being of any potential use in understanding mental health, other than simply serving as examples of that which is disordered, and must be corrected?

Dr. K’s reply:

Thank you for your important question. We definitely believe that adults with autism and other psychiatric conditions are invaluable in understanding the experience of the condition. As we plan our next public service campaign, we will be carefully and consistently gathering information from individuals through our community outreach and our partners with advocacy groups.

[Uh-huh. We’ll see if he means it.]

3) Do you feel that professionals and researchers in psychiatry are accountable for the attitudes which they themselves instill in others, attitudes which can be clearly shown to propagate throughout society and thus have a direct, daily impact on an entire class of human beings numbering in the millions?

Dr. K’s rreply:

We agree with you that professionals and researchers in psychiatry should be aware of the impact of their attitudes on others and that their training and experience should include a diverse portrait of human nature. These issues are carefully addressed in our training programs for child and adolescent psychologists and psychiatrists. However, the negative attitudes with psychiatric disorders are not cause by clinicians, but by the public that blame parents and the children themselves for their behavior, impulsivity or anxiety.

[A “problematic” answer, to say the least — I’ll be deconstructing that one soon, and will post a link here to the blog entry.]



kapgar:

Although we understand that your target market is children and teens, surely it could be helpful to talk to adults on the spectrum about their experiences?

[NOTE: “on the spectrum,” here refers to the DSM diagnoses, “autistic disorder” (autism), “Asperger’s disorder,” “nonverbal learning disorder,” etc. — a.k.a. “autism spectrum disorders.” Like the informal terms “Autie” and “Aspie,” the term “on the spectrum” is widely used regardless of whether or not the person in question has been granted an “official” diagnosis.]



jypsy:

1) (blocked)
Dr. K, You stated: “If you’re an adult with an autism spectrum disorder, the world needs to be much more understanding of your differences, understand the strengths that you bring, and help you find a place in the job and personal world.”

except for the “job” part, do you believe this applies to children as well?

2) (answered, evasively)
“We clearly know that both are biological in nature and require understanding, diagnosis and treatment.”

Do you believe that every diagnosis requires “treatment”?

3) (blocked)
“Our public service campaign in the past and the one were planning to launch in the Fall 2008 is to better educate the public about how real, how common, and how unaddressed these conditions are in children and adolescents.”

Will you be referring to autism as an “epidemic”? If so, what science will you be using to back that claim?

4) (answered, evasively)
What is on your list of “evidence based treatment” for ASD?

5) (blocked)
Do you understand, and can you articulate, why so many were offended by your Ransom Note campaign?

6) (blocked)
I asked if you believed every diagnosis required treatment and you replied that not all diagnoses have treatments and some “symptoms” aren’t a diagnosis and therefor do not require treatment. Could you please address a diagnosis, like an ASD, to which there are many apparent treatments – do you believe everyone with an ASD Dx requires a “treatment”?



Paula:

1) Regarding the Ransom Notes ads, Although your ads were meant to target parents of untreated children, the prominent position of the ads on billboards and in other print media reaches a wider audience including adults with the conditions, other parents, members of the general public, colleagues in other institutions who may be stigmatized, so to speak, by the negative rhetoric of the ads. The ads do nothing to educate the general public or parents who do not already know about the conditions described. They further misinformation. It tickles me somewhat to think of the “ransom notes” for autism: “He will not be able to interact socially as long as he lives” and the Asperger syndrome one, which reads, in part: “We are destroying his ability for social interaction and driving him into a life of complete isolation”, since the outcry against the “notes” could not have developed a successful campaign if that were true.

It’s a more sensitive group of stakeholders than the audience for a Mountain Dew commercial. It is crucial that you be responsible to all parties concerned, especially children and teens, who can read and may internalize the message of the ads in ways that you don’t intend.

2) “Psychiatric illness” is too broad a term. Using the word “psychiatric” to describe ALL of the conditions included in the DSM can be misleading if the intent is to get people to come to your clinic. The DSM-IV incorporates not only mental illnesses (conditions that affect the mind) but also neurobiological disorders that affect the brain. For example, “mental retardation,” a neurobiological condition, is listed, as are learning disorders. The “notes” also paint a very static portrait of what (in the case of autism and Asperger syndrome) is a developmental delay but rarely a condition where absolutely no development occurs.

3) Take a look at other initiatives such as the “Think Differently About Autism” (http://www.think-differently.org.uk/) campaign in the United Kingdom. While the target audience is somewhat different, it would be instructive to study the language used and modify it for a U.S.-specific audience. The “Think Differently” campaign is a bit more far-reaching because it addresses issues across the lifespan. For many people with the conditions you targeted, we will have those conditions for life. Autism and Asperger syndrome are lifelong conditions, although appropriate services and interventions across the lifespan can do much to improve life outcomes for individuals affected.



Sophist:

Hi, my name is Emily. I am an autistic adult.

As an autistic adult, it both saddens and frightens me that, particularly in the United States, autism (the entire spectrum) in adults is so little understood. I am going into the field of autism research and I am shocked at how little research there is done on adults, that there are no adequate diagnostic evaluations specifically FOR adults. I know the scientific community says it doesn’t assume that autism stays the same through the lifespan, and yet where is the research?

There is a fever in this country to discover the secrets of autism as we are young. But these secrets are not so easily forthcoming, and older individuals are ignored not only by many social programs, but by the population and media in general. Even many charitable organizations who say it is their mission to help autistic people, they ignore us even when we do speak and proffer our input.

I realize the focus on children is because this is developmental, so understanding some of its earliest stages is vital. Yet to ignore the lifespan: this is a disservice and needs to be ratified.

I also realize that this forum’s topic is “children with autism” rather than adults. But why this exclusion? The children of today are the adults of tomorrow. Will they be ignored as well?



codeman38:

Greetings.

My name’s Cody, and I’m a 25-year-old Aspie; I was diagnosed with Asperger’s syndrome in high school.

One of my biggest issues with the whole Ransom Notes campaign was that, though a lot of people involved in this campaign talked about how parents might perceive the ads (and even then, there were parents who vehemently disagreed), nobody seemed to give even the slightest thought to how those with the conditions described in the ads might view them. Indeed, it seems as if nobody who actually had a diagnosis of AS, autism, ADD, etc., was actually consulted at all during the preparation of these advertisements (though feel free to correct me if I’m wrong).

And this input is quite important.

I’ve been thinking back to my own childhood; though I wasn’t yet diagnosed with AS, I did have an ADD diagnosis fairly early on. I was also able to read well before kindergarten. And I’m not sure how precisely I would have felt upon reading one of these ads at that age, but I’m pretty sure my first reaction would’ve involved at least some despair and frustration.

Think about what it would do to the self-esteem of a young child were to read that he’s bound to “a life of complete isolation”, or worse yet, that he’s a “detriment to himself and those around him”, all because of a condition that’s beyond his control. And if the child’s already dealing with severe depression, when he reads an ad telling him that he’s being held hostage by the condition and there’s “no hope of getting out,” is his first thought really going to be to tell his parents to take him in for treatment?

I’m not saying that the ads need to be all hearts and stars and rainbows, that they only need to present the good while completely ignoring the bad. But at the same time, there does need to be some input from the very populations being described, to make sure the description isn’t one that would offend them.

Dr. K’s reply:

Thank you for sharing your personal experience with us. The goal of our public service campaign is to better educate the public with a well-rounded picture of how real, how common, and how diverse these conditions are in children and adolescents as well as to dispel stereotypes. The most important issue was that if these conditions were left unaddressed or untreated then children are unable to enjoy their lives at school, play and at home. We will continue to gather information through our community outreach and partners at advocacy groups.

Harold S. Koplewicz, M.D.
Director, NYU Child Study Center



montana:

1) I am wondering how often children brought into the Study Center by their parents are treated with medication. After researching the effects of these medications (ie: antidepressants) on children, I have noticed that there is a paucity of evidence supporting their benefit while there is an abundance of evidence corroborating their non-effect or damage in children. For example, studies have reported that the so-called improvement in children taking anti-depressants can be attributed to the 80% benefit that also occurs on placebos (Tonkin, 2004); in addition, “adverse effects may have been misattributed to the disease instead of the drugs (Mansfield, Jureidini, Ravin, Tonkin, 2006). Further, in hearings held in 2004 the FDA confirmed that antidepressants increase ‘suicidality’ in children and adolescents (Lenzer, 2004). This kind of data has been available for at least 4 years now, so I am curious as to what extent it has been considered and used to inform treatment methods endorsed and practiced the your Study Center. I noticed when the campaign was initially launched that drug treatment was usually among the top treatments recommended. How often, before resorting to medication, are other etiological factors considered, ie: diet, exercise, domestic violence, etc?? Are families presumed to be doing “all they can” if they’ve resorted to bringing their child into a medical center?

2) Why was the Center compelled to resort to scare tactics? Shocking parents into treating their kids often entails disempowering both the parent(s) and the child. Use of ransom note iconography brings to the surface the disempowerment that these families are already feeling. Further, both situations—a kidnapping and a regimen of treatment—leave the child and his/her completely disempowered. For example, what kind of consent can a child give? How can a family make the best decision for their child when they feel only an “expert” knows the answer and when the experts aren’t providing very many options? How is this kind of activity not considered to be a form of coercive treatment?



Sherron Ostrander:

1) Many of us, both adults, and parents of children with disabilities are curious to know just what are your plans for raising awareness?

Dr. K’s reply:

Thank you for your inquiry. The goal of our public service campaign is to better educate the public about how real, how common, and how unaddressed mental health problems are. This forum was the first step in getting information about what parents, community organizations and advocacy groups think would be helpful strategies. Our Web site, AboutOurKids.org, is dedicated to raising awareness while educating parents, educators and mental health professionals about child and teen mental health disorders.

Harold S. Koplewicz, M.D.

2) So, what exactly do you mean by “raise awareness”? Do you mean create an environment where these children will be accepted, or do you just mean early diagnosis so that whatever is “wrong” with them can be eradicated?

Dr. K’s reply:

Thank you for your insightful and critical question. By raising awareness we strive to educate the public about the nature of a disorder, the ways in which it is manifested and experienced by children and adolescents, and what treatments can be effective. We hope this approach will lead to attitudes of understanding and acceptance of the diversity of human nature, not that something is “wrong” and should be eradicated.

Harold S. Koplewicz, M.D.



Scatter:

From: scatter@theicarusproject.net
Subject: question for Dr. Koplewitz
Date: February 26, 2008 11:31:11 AM EST
To: csc-comments@nyumc.org

hello – the forums appear to be locked on my computer so i’m submitting this question via email. thank you.

Good morning, Dr. Koplewitz. Thank you for giving us the opportunity to voice our concerns, it is a sign of great respect for your community that you care enough to ask our opinions and I for one am grateful. I look forward to your responses and the evolving dialog that is sure to follow. My name is Sascha DuBrul and I am a founding member of the Icarus Project (http://theicarusproject.net), a growing organization of predominantly young people living with experiences that are commonly labeled as bipolar or other psychiatric conditions. It is our belief that we have mad gifts to be cultivated and taken care of, rather than diseases or disorders to be suppressed or eliminated. We envision a new culture and language that resonates with our actual experiences of ‘mental illness’ rather than trying to fit our lives into a conventional framework. We are not opposed to the use of psychiatric medications, but we are very distrustful of the influence that the pharmaceutical industry plays in modern psychiatry and we are very interested in alternative approaches.

I work with a group of undergraduate students in the Gallatin School of Individualized Study at NYU who are very skeptical, not only of your work with children, but of the current ideological foundations of your profession. I don’t know if this will come as a surprise to you or not, but more young people every day are questioning the fundamental underpinnings of your work, and many of us believe that in the future a lot of your theories about the nature of the human mind and body will be looked back on as very flawed and dangerous. Since I’m sure others will be asking more specifics, I’ve decided to play an important and usually unrecognized voice in these types of conversations. The following is a quote from the book Moving Beyond Prozac, DSM, and the New Psychiatry: The Birth of Postpsychiatry by Dr. Bradley Lewis. Dr. Lewis, a practicing psychiatrist and a respected professor at the Gallatin school.

I’m wondering about your thoughts on the way he writes about the “disease model”.

If you don’t have time to properly address my concerns now, which is quite understandable because I’m sure there will be many tough questions this morning, I do hope you take the time to respond to me in the near future. There are a lot of people looking forward to your response. I also think it would be really productive and interesting to have this conversation in person, and I would welcome the invitation if you feel compelled to extend it. Thank you for your time.

“Though the DSM-III developers claim to use a neutral rhetorical frame, when we connect their work with the models-of-madness literature, we see that they actually use a very rigid “disease model” (also called the “medical model”). The central tenets of the disease model include the following:
– Mental pathology is accompanied by physical pathology
– Mental illness can be classified as distinct disorders that have characteristic common features
– Mental illness is biologically disadvantageous and handicapping
– The cases of mental pathology are explicable in terms of physical illness (Tyrer and Steinberg 1998, 10)

The disease model in psychiatry forces psychiatric observation and research to emphasize signs, symptoms, formal mental status exams, lab tests, differential diagnosis, pathophysiology, etiology, medical treatments, and prognosis.

The larger rhetorical frame for the disease model is based on natural-science frames of objectivity, precision, and reliability. As philosopher Charles Taylor points out, there has been a long tradition in social science of trying to understand humans through the methods of natural science. Taylor explains that because the natural sciences have been so seemingly successful at explaining the natural world, “the temptation has been overwhelming to reconstruct the sciences of man on the same mode” (1977, 105). But a host of philosophers have pointed out the problems with this approach. Human experience, human choice, and human action are sufficiently different from the inanimate physical domain that there exists an unbridgeable gap between human studies and the natural sciences. Humans may be made of physical material, but attempts to study humans with natural-science methods alone turn out to be ludicrously arid and incomplete (Lewis 1994).

Despite these serious philosophical reservations, DSM-III developers fall straight into the temptations of natural science. With their unbridled enthusiasm for the disease model, DSM-III developers wholeheartedly embrace a natural-science rhetorical frame for psychiatric research. This embrace of natural science means there was nothing “neutral” about the frame for DSM-III. The manual highlights, prioritizes, and organizes the “facts” of mental illness to suit the particular frame of the disease model. From the time of its publication forward, the disease model legitimized by DSM-III has become so dominant that it may seem that there are no alternative models for psychiatric diagnosis. But that is hardly the case. There is a wealth of treatment varieties for psychic distress. R. Corsini and D. Wedding’s Current Psychotherapies (1995) lists over four hundred different systems of psychic treatments, and it only scratches the surfaces. Each treatment variety has its own way of assessing what is wrong and applying that assessment to treatment interventions. Each treatment, in effect, has its own unique rhetorical frame for diagnosis.

Thus, a deeper rhetorical critique of the DSM must ask: Why choose one particular rhetorical frame for the manual and disregard all others. Rather than a natural-science frame, why not choose a phenomenological frame? Why not a feminist frame, or a disabilities frame, or a gay and lesbian frame, or a Buddhist frame? Indeed, why not multiple models of diagnosis based on multiple models of madness? In sharp contrast to the natural-science approach of DSM-III developers, post-modern rhetorical theory would not hide rhetorical frames through slight of hand (like claiming to be theory neutral), nor would it close out alternative rhetorical frames in favor of a single frame. Many models of madness can be applied to psychic distress, and no one model is right. They all have advantages and disadvantages. In the end, the choice of model or frame depends not on science but on the perspectives and values of the person and persons involved.

Though a detailed comparative analysis of the models is beyond the scope of this chapter, the details are not necessary to make this very basic rhetorical claim: DSM-III developers ushered in an approach to psychic diagnosis that is not only bad science but also bad rhetoric. To make this argument good, all I need to show is that for many stakeholders in psychiatry the advantages of the disease model do not exceed its disadvantages. The main advantages claimed for the disease model are improved diagnostic reliability, clarity, and promotion of differential diagnosis (Andreasen and Black 2001, 34-35). It is also fair to say that natural-science models like DSM-III have advantages in researching and treating the most clearly physical dimensions of the human psychic: bodies, brains, neurotransmitters. As such, natural-science models will have advantages in developing biological models of psychiatric illness and creating pharmacologic and other somatic treatment interventions.

But beyond these advantages, there are also many disadvantages to the DSM-III disease-model approach. Indeed, most critics of contemporary psychiatry focus their critiques on problems with the disease model. These critiques are many, and the problems with disease-model psychiatry are severe, The rhetorical frame of the disease model tends to
– naturalize and reify “mental illness”;
– feed into the medicalization of deviance;
– feed into psychiatry as an agent of normalization, state control, and multicultural oppression;
– feed into the pharmaceutical industry boondoggle; and
– rest on a natural-science model approach to humans that excludes other approaches and excludes multiple approaches.

These severe critiques of the disease model are more than enough to convince many that the model is a deeply problematic rhetorical frame for psychiatry. ”

(107-109 Lewis 2006)



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2 Responses to The Real Town Hall

  1. SherronO says:

    I wish we had all of the Dr.’s replies.

  2. Mark Statman says:

    For more on Harold and the NYU Child Study Center, especially the demise of the Advanced Learning Lab, see my blog. These folks clearly need to be watched.

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