Whose Planet Is It Anyway?

Friday, February 29, 2008

Outcomes

I wasn't surprised when the NYU Child Study Center's online forum on Tuesday turned out to be a heavily moderated propaganda fest that blocked almost all comments from self-advocates and made only the slightest pretense of responding to the concerns of the thousands of people who objected to the Ransom Notes advertisements. Still, there was one exchange that provided some useful insight into the mindset underlying the ads:


Kristina Chew, Ph.D.: It would be good, perhaps, to teach children about conditions like bulimia, depression, autism, in ways that state simply what they are, without overly emphasizing that it is "terrible" to have them. That's not to say that a person with (for instance) depression does not suffer or have difficulties. It's important to emphasize hope and help, rather than fear.

Dr. Harold S. Koplewicz: I agree with you. However, if we don't educate the public about outcomes of untreated psychiatric disorders, they tend to minimize the disorders; "she is just sad, snap out of it, he is a quirky kid, why give him accommodations, she is just a dizzy blonde, not a child with ADD."



This statement by Koplewicz is very similar to the excuse trotted out by Autism Speaks in trying to justify its admitted manipulation of the images shown in the Autism Every Day film to get the maximum negative effect. According to this argument, it's vital to raise awareness by drawing attention to bad outcomes so that parents will be motivated to get prompt treatment for young children and avoid these bad outcomes. People shouldn't be so thin-skinned, they declare, as to complain about a little collateral damage in this noble war to save children from preventable suffering.

Quite apart from the profound moral deficit shown by those who see nothing wrong with intentionally creating stigma and stereotypes to promote an agenda, they don't even have any factual data to support their claim that they are preventing bad outcomes. Where are the long-term studies following large numbers of children as they grow into adulthood and identifying specific factors that contribute to various outcomes? Nonexistent, that's where. In the case of Asperger syndrome, a diagnostic category that came into use less than 15 years ago, there hasn't been enough time to do a meaningful long-term study of outcomes even if someone had bothered to try. Which they haven't.

No professional can truthfully say that a particular medication, therapy, or what-have-you will prevent a negative long-term outcome. The most they can honestly claim is that some people in similar situations have felt that the medication, etc., was helpful. (And we don't even have a culturally unbiased consensus definition of what a successful outcome might be—that's a whole 'nother can of worms.)


There are a few things we do know, though, with regard to outcomes. We know that widespread negative images can damage a child's self-concept. We know that there is such a thing as a self-fulfilling prophecy. We know that when children are placed in segregated school environments and not expected to learn, it's quite likely they won't learn. We know that separate but equal is inherently unequal. We know that when employers think of certain groups of people as a detriment to society, there will inevitably be serious problems with employment discrimination. And we know that human rights must be vigilantly guarded, even in the twenty-first century, as they can all too easily disappear.

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14 Comments:

  • Whenever someone starts a response with "I agree with you, but..." or "I agree with you, however..." it usually broadcasts that they don't agree with you at all.

    Thanks for this great post. Without outcome studies, what do we really know? Certainly predictions of doom if therapy/medicine x,y,or z are not performed is not warranted.

    Joe

    By Blogger Club 166, at 12:15 PM  

  • First of all, I have major beef with autism being called "psychiatric disorder". I have two kids on the spectrum and husband with psychosis (and no, this is not a figure of speach, he indeed has delusional disorder paranoid subtype) and I just can't see how someone can equate the two...

    It is kind of ridiculous, really - when it comes to my children I have "treatments" and guilt trips about them shoved down my throat on a daily basis but when it comes to my husband who would really benefit from the treatment I am pretty much hitting the wall. There is no public outcry about middle aged men sinking into depression or delusional disorder, presumably because you can't sucker people into giving money to that particular cause...

    By Anonymous Anonymous, at 3:20 PM  

  • Yes, I was there--most of my comments were rejected. Among them:

    "To catch the public interest, 'awareness' campaigns often focus on the worst, most dramatic aspects of a condition. I understand that this is standard practice in the media: The more dramatic, the better. This may increase public awareness, but it does no good for those who have been diagnosed. Rather than having to explain, "I have a neurological condition; I think differently," they now have to ward off the preconceived ideas created by overzealous awareness campaigns. Publicity like this can really backfire to create a bad reputation to precede anyone who has to disclose a disability. What are you doing to prevent this effect?"

    A direct question. How are you going to fix this problem? It got ignored.

    By Blogger Chaoticidealism, at 1:58 PM  

  • Yes, I'm still miffed I wasted my time on the "town hall meeting." We all pretty much knew that's how it would be. Anyway, I agree on all your points. Well said.

    By Blogger S.L., at 12:40 AM  

  • I was going to quote one of your points to agree with it, and then I realised that the post was just chock-full of them! Excellent synopsis, especially the points about cultural biases in "successful outcomes".

    andrea

    By OpenID qw88nb88, at 1:04 PM  

  • good post. its late so I don't have many words related to it......

    I need to learn a few things: how did you link to another post? I'm new at this and haven't figured that one out yet..

    thanks

    Athena at athenivanidx
    (there's two more of us)

    By OpenID athenivanidx, at 12:30 AM  

  • This is a great post. I too was going to quote things you said to comment on how much I agree but realized there were too many.

    I'm struggling lately with the concept of outcome (in a good way, I think). What is any of our 'outcome'? Why does my son need to get to a perceived certain point in his life for him to have a good life?

    By Blogger mumkeepingsane, at 10:22 AM  

  • Since autism/Aspergers is still considered under the umbrella of psychiatric disorders, the people who make claims about medication or treatment for all other pychiatric disorders will have an opertunity to admit defeat later after many people have been hurt by what they didn't know.

    Based on how pychiatric disorders are treated (and always have been treated) this so called forum is just another indication that those in charge of making these decisions will have yet another opertunity to just say, "We just didn't know any better at the time." at a later time and they will not be held accountable for saying or doing anything else.

    Finding ways to use better more humane meds or treatments or whatever to help those who they decide have less than desirable traits or illness, doesn't seem to be something that our society seems to have as a REAL priority.

    There is lots of money in selling what they don't have, don't want to have, or what they know doesn't exist, but not much in making real or better accomidations for certain people.

    If they don't want to find more humane ways of helping this population or accomidate or provide better educational opertunities, then it would only make sense that they want to create more fear mongering and more negative stereotypes that define these people so that other methods of eliminating this problem (or eliminating the people themselvses) will be seen as valid options.

    Another good post ABFH. Sorry for the cynisism. I think change CAN happen. I just think we have to stop acknowleging unreal efforts (such as this forum) as though they were real efforts.

    By Blogger Ed, at 7:30 PM  

  • Thanks everyone!

    Athena, to create a link in a post, you first select the text that you want to make into a link, and then you click on the link icon above the text box. It looks like a chain. That will make another box come up where you paste in the web address that you want to link to.

    By Blogger abfh, at 8:55 AM  

  • As far as I can tell, psychiatric disorder means: diagnosed by observations of behavior, self-report of behavioral or cognitive/emotional characteristics or tests of behavioral responses (eg IQ test). In which case, autism clearly is a psychiatric disorder, though with autism and many other conditions we may soon be able to use things like fMRI to diagnose them (for example, many ADHD kids show reduced frontal lobe activity and many autistics process NT facial expressions less or in the 'logical reasoning' area instead of the usual).

    By Blogger Ettina, at 2:22 PM  

  • Oh, forgot my original comment.
    A slight correction on yours. 'Separate but equal' *can* actually be equal, provided a proper education is provided to both groups. Recently they've found that girl only schools tend to improve girls' math scores, for example, because the boys aren't dominating math class. Some people suggest boy only schools may have a similar effect on reading in boys.

    By Blogger Ettina, at 2:24 PM  

  • Last comment:
    I remember reading an article(PubMed ID 4436165), cowritten by Ivar Lovaas, discussing ABA treatment of an effeminate boy. They claimed that since he was noticeable effeminate before age 5 (he was 4) he was likely to grow up to be a transsexual or at the very least gay, and they could spare him a lot of suffering if they could make him normal. Of course, they had absolutely no evidence that what they were doing would have any effect on his adult sexual orientation or gender identity, or in fact any effect apart from making him 'live a lie' and feel bad about himself. Can't remember if it's him or some other effeminate boy who got ABA and grew up to be bisexual and attempted suicide after his first sexual encounter with a man.

    By Blogger Ettina, at 2:31 PM  

  • ettina:

    yes, I understand this definition of psychiatric disorder but IMO it is so generic that it doesn't make any sense. You can definitely observe, test, or self-report a behaviour but there is still rather subjective value judgment involved. To attach to your other comment - you can observe the behaviour of transsexual or homosexual person. Is that a psychiatric disorder (as it used to be) or simply a difference compared to majority (as it is mostly seen today)? Does someone who is left-handed have psychiatric disorder or not?

    IMO, autism spectrum is defined by certain patterns of strengths and weaknesses and those are simply different from those found in the majority of population. I would personally not attach positive or negative values to those, I think that most negative aspects/experiences of autism are caused by the clash of autistic individual with the world around and are not something that is inherent to autism.

    On the other hand, I find it really hard to accept paranoid delusional disorder as neutral value state of mind. Imagine intelligent, loving and rather happy person who starts believing into persecution which objectively does not exist. His life becomes sheer hell because of this belief. Yes, part of it is caused by the fact that those beliefs are not shared by other people but even if that were not the case, he would still suffer because of alleged persecution.

    I am aware of the irony that some of this resembles "changeling" view of autism which is something I do not accept. So, maybe I am wrong...

    By Anonymous Anonymous, at 3:39 PM  

  • There was a positive to the censorship. It kept out the loudmouths with the vaccine agenda from what I saw.

    By Anonymous Anonymous, at 6:51 AM  

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