Register for NYU Child Study Center Online Town Hall at 9am TODAY
February 26, 2008 by Kristina Chew, PhD
Filed under Health
Update, 3.10pm: For a transcript of the Town Hall forum, you can go here.
If you tried to post a comment and it did not appear, you can send it to dkmnow (at-thing) yahoo (dot-thing) com, or leave it in the comments section below.
Today from 11 a.m. – 1 p.m., the NYU Child Study Center is holding an Online Town Hall on Children’s Mental Health. Details can be found here; registration starts at 9 a.m. today and commenters have contributed thoughts on what to address in the forum. How can we improve awareness and care for individuals with conditions like autism, Asperger’s Syndrome, bulimia, OCD, depression, and in ways that do not simply denounce and shame people? How can we advertise not fear, but hope?
My chances for any significant real-time participation in the discussion are pretty slim — writing is murderously effortful for me, even when NOT in a fast-paced interactive format.
But at the very least, I’m hoping to save all the posts in sequence for analysis and possible submission of responses, after the fact.
Forty-five minutes into the discussion so far, and ALL of my posts have been blocked by the moderators (if not by Mr. Kop himself).
By far the most “controversial” of my posts was simply this:
“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?” [from my WordPress post about "Ransom Notes"]
As “town hall meetings” go, this is looking a lot more like a fan-club recruitment seminar.
I posted something, not even all that controversial, about twenty minutes ago. I’m still waiting to see it online. At least Ari was able to get one comment in.
I just got a comment in—my 3rd try. Keep at it!—save a copy of the comment and post it here, if you’d like.
One comment that is still being moderated mentioned “Ransom Notes.”
I haven’t been able to get my comment up yet.
Joe
Think it’s just gotten up—-I just responded to Dr. Koplewicz regarding his statement about undiagnosed ADD.
I asked what he would estimate the proportion of “regressive” autistics in those diagnosed with autism.
ME: “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?”
BLOCKED
I’m seeing mostly parents commenting, and some professionals, on the forum?
Since I need to leave to get my child from school I sent two posts to them, at which point my access was locked. Here are the ones I sent, and the one that I didn’t send because I was locked out:
Regardsing 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.
and:
“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.
and:
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.
ME: “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?”
BLOCKED
This was Dr. Koplewicz’s response to my comment that was posted—-my own response was not posted on the NYU forum.
Dr.Koplewicz wrote:
“I agree with you. However, if we don’t educate the public about outcomes of untreated psychiatric disoders, they tend to minimize the disorders; “she is just sad, snap out of it, he is a quirky kid, why give him acommodations, she is just a dizzy blonde, not a child with ADD.”"
Indeed yes; my husband—he’s a professor at Fordham—has ADHD, probably severe and in childhood and it was not treated or identified during his childhood. He still has ADHD and understand how it helps (and at times hinders) his thinking. So I think it’s necessary to emphasize that outcomes are not only negative—-that a person can learn to live with a condition like ADHD and see how there are strengths and challenges. Also, it needs to be emphasized that these conditions are often lifelong—–there has been discussion recently about adults with eating disorders and the question is whether they have always had these conditions, or whether the anorexia/bulimia is of more recent onset.
Kristina Chew
What Joke. Almost all my comments blocked and what he did post & reply to he do so very evasively.
I have a complete record of all the posts that got through. But I would very much like to see as many as possible of those that were blocked. If anyone is interested in putting together contrasting lists for analysis/critique, feel free to e-mail me, and I’ll be happy to help in any way I can. Just put “NYU/CSC” in the subject line, so I’ll know it’s not spam.
As for that “discussion,” it’s quite obvious that Mr. Kop has his own unique definition of “town hall meeting,” as he clearly felt free to cherry-pick only those questions he found enjoyable, convenient, or profitable to address. He was not seeking input in any way, shape, or form. His only purpose was to TELL people what to believe, and to promote himself and his own pet interests.
How repugnant.
>:-p
I have the transcript too. I also have most of my unanswered questions. I’ll try to recall my other and get them off to you.
Ah, thank you!
dkmnow (at-thing) yahoo (dot-thing) com
David, I expected to find your email address on your blog but didn’t, email me at jypsy (at) isn (dot) net and I’ll send you my answered and unanswered questions.
(Although I registered I showed up as “anonymous” — I wonder if that means they won’t be replying to me…)
oops… thanx!
Joe has come up with this pdf. transcript of the Town Hall Meeting – http://www.youseful.net/nyaff/NYUTOWNHALL.pdf
I registered with my normal username, posted something less than a half an hour after the forum opened, but it never was moderated through.
To be fair, I only made one post that was several paragraphs in length, but still. (And the fact that their forum software could not even properly handle paragraph breaks probably didn’t help.)
And the text of my comment, for the curious:
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.
(And yes, I realize I made a typo in the first sentence of the next-to-last paragraph. I only noticed that *after* I’d submitted it…)
I registered and logged in at 9:30, but from 12 onwards (when I was able to look at the page again), what should have been the “Post Reply” button instead displayed “Locked”. Sent a couple of private messages to the moderator, but no response.
I had the problem with the “locked” forum with no reply button too. Going to http://forum.med.nyu.edu/posts/list/801.page instead of http://forum.med.nyu.edu/jforum/posts/list/801.page solved the problem. I was also totally blown away by the 30 second refreshing – not autism friendly at all! We know where our refresh button is people, even a 1 minute refresh (with our option to do it ourselves sooner) would have been much better
I registered as Kristina Chew and my comment came up as “Anonymous,” though I did put my name in the post.
I am betting that in a few days or maybe even a few hours, we’ll see a “Your voices have been heard!” announcement on the NYU site.
For some reason, an image just flashed through my mind of the US Constitution with the words “We The People” redacted…
“If you tried to post a comment and it did not appear, you can send it to dkmnow (at-thing) yahoo (dot-thing) com, or leave it in the comments section below.
AHA! Thank you!
I’ve only got a handful so far, from five people including myself. But there has been some interest shown in compiling a list of blocked posts, to made available for reposting. I’ll be keeping contact info so that all authors can be asked for explicit permission before their posts appear. I don’t know if their will be enough to make any impact, but I’ll be doing what I can, and I’m open to any and all ideas.
Let me know about whatever you post—-
Yes, the 30-second refresh kept Firefox buzzing on my machine.
jypsy: Seconded on how neurodiverse-unfriendly the auto-refresh feature was.
…And wow, I just went and looked at the HTML again; if I’m reading this correctly, it tells Internet Explorer to refresh every 30 seconds and everything non-Microsoft to refresh every twelve. No wonder it was so difficult to read in Firefox and Safari.
Yea, I timed it, and it was definitely less than 15 seconds on Firefox. Very irritating, even for we NT.
And yes, Kristina, my comment did eventually get through, or might I say, it was posted (not sure if it “got through”).
Joe
The 12 second update meant I kept checking to see what was getting posted—regular comments from the NYU Child Study Center kept appearing.
Ah, the fix was obviously in, to start with.
I don’t think “those people” (as General Lee used to refer to the US Army) were the least bit willing to be honest and earnest with those of us who objected to their outrages.
Okay,
[deep breath]
My “call to arms” post started off pretty darned snarky, but has gone through several incarnations, and I think I’ve managed to filter out most of the venom. The latest version is here:
http://dkmnow.wordpress.com/2008/02/26/nyu-silenced-voices/
What would be really awesome is if we could collect at least as many posts that were blocked as there were “approved” posts. But somehow, I doubt that will happen. :-p
We’ll see…