Thursday, December 20, 2007

Now Comes the Hard Part

Like many in the autism related blogosphere, I rejoiced yesterday when I heard that the NYU "Ransom Notes" campaign had been pulled by its director, Dr. Harold Koplewicz. I had blogged about my ethical concerns with this campaign, and felt that the campaign demeaned those who had those conditions, and would only further continued ostracizing and marginalizing by the public at large.

It is a huge thing for someone to stop an ad campaign that is just getting underway. I am sure that there were a lot of people that had a lot invested in designing and implementing that campaign, and it was hard for them just to scrap it. It is a testament to Ari Ne'eman's astute perception of the exact tone to strike in opposing this campaign, and his organizing prowess that this victory took place.

At the same time, I give Dr. Koplewicz credit for his part in this. Having launched a big campaign, and after reviewing the large outpouring of negative comments, he was willing to not let his ego stop him from doing what was the right thing. As I stated in my original post, there is much in his past stated comments, as well as publications, to think that he is not the enemy of autistics and others with various conditions. When someone stops, apologizes, and asks for input, I think they deserve the benefit of the doubt.

I think it is a major step that Dr. Koplewicz proposed a "town hall" forum that would include viewpoints of all the stakeholders of the campaign.

Now that the "relatively easy" part of objecting to what was obviously a very negative and hurtful campaign is over, the real work needs to begin. It is much easier to protest than to come up with positive and catchy slogans and ad campaigns. I have great hope that there are many very creative individuals within the disability community that will help in designing a campaign that all can be proud of, and that will be effective.

On another front, as has been mentioned elsewhere (here and here), The National Institute on Mental Health issued a "Request for Information" asking for input into what kind of autism research should be funded. The deadline for submissions is near (Jan. 4th). Responses need to be limited to two pages, and response needs to be to a particular e-mail address (

So put on your thinking caps quickly, get your thoughts together, go to Kathleen Seidel's site to see the entire proposal, and get your submissions in. We all need to make positive contributions to let people know what we expect from our government and private sectors.

Sunday, December 16, 2007

Ethics-Easier Said than Done

Although I consider myself a good general physician, as well as being very good in my chosen specialty, I am neither a psychiatrist nor a pediatrician. Since this blog deals a lot with issues concerning autism, I don't usually put on my "doctor" hat here. But sometimes some subjects get to me not just as the parent of my autistic son, but also as a physician.

The recent episode of the NYU Child Study Center's (together with its director, Dr. Harold Koplewicz) "Ransom Notes" campaign raises serious ethical concerns that I think need to be addressed. Kristina Chew over at Autism Vox summarized many of the excellent responses by the autism community to these ill conceived ads. I'm going to address this purely from the perspective of a fellow physician.

I have always considered the ability to practice medicine a privilege that is granted me by society. Having been granted that privilege, I, like all physicians, have certain responsibilities towards not only my own patients, but also to society in general.

The American Medical Association, as one of the major professional associations of physicians in the US, publishes Principles of Medical Ethics which all physicians are expected to adhere to. I'd like to take a few minutes here to review some of what is stated in that document. Here's one section that I found:

E-9.123 Disrespect and Derogatory Conduct in the Patient-Physician Relationship

The relationship between patients and physicians is based on trust and should serve to promote patients’ well-being while respecting their dignity and rights. Trust can be established and maintained only when there is mutual respect.

Derogatory language or actions on the part of physicians can cause psychological harm to those they target. Also, such language or actions can cause reluctance in members of targeted groups to seek or to trust medical care and thus create an environment that strains relationships among patients, physicians, and the health care team. Therefore, any such conduct is profoundly antithetical to the Principles of Medical Ethics. ...

On its website NYU's Child Study Center (CSC) gives good lip service to subscribing to the above principle:

Our key goals include:

* Increasing the body of scientific knowledge about child mental illness
* Eliminating the stigma of being or having a child with a psychiatric disorder
* Improving the practices of professionals serving children
* Influencing child-related public policy

How does that square with the "Ransom Notes" campaign, where they have ads such stating things like:

We have your son.

We will make sure he will
not be able to care for
himself or interact socially
as long as he lives.

*This is only the beginning.


Now I might expect something like the above ad twenty years ago, or perhaps now from someone who is totally ignorant regarding current concepts in autism. But from a major medical center's Department of Child Psychiatry? Never. Such rhetoric is blatantly wrong, totally derogatory, and sure to increase discrimination against all autistics. To hide behind a justification of "increasing awareness" is disingenuous at best, and outright lying at worst.

The "Ransom Notes" campaign is all about publicity. Whether it's viewed as primarily advertising for NYU's CSC (which I do), or as a public service message, the following section of the AMA's Principles of Medical Ethics addresses this point.

E-5.02 Advertising and Publicity

...Aggressive, high-pressure advertising and publicity should be avoided if they create unjustified medical expectations or are accompanied by deceptive claims. The key issue, however, is whether advertising or publicity, regardless of format or content, is true and not materially misleading. ...

Again, the gross factual inaccuracy of the description of autism renders this ad unethical.

When it comes to Psychiatry, the World Psychiatric Association also has some things to say regarding ethics. This comes from them commenting on psychiatrists and the media:

• Psychiatrists addressing the media. The media has a key role in shaping the attitudes of the community. In all contacts with the media psychiatrists shall ensure that people with mental illness are presented in a manner which preserves their dignity and pride, and which reduces stigma and discrimination against them. An important role of psychiatrists is to advocate for those people who suffer from mental disorders. ...

Keep the above in mind while reading this:

We have your daughter.

We are making her wash her hands until
they are raw, every day.

This is only the beginning.


We have taken your son.

We have imprisoned him in
a maze of darkness
with no hope of ever
getting out. Do nothing
and see what happens.


Preserving dignity and pride? Reducing stigma and discrimination? Not in my book.

Now from Googling Harold Koplewicz and reading about him, before this I wouldn't have thought him a bad guy. He's written several books, including one titled "It's Nobody's Fault:New Hope and Help for Difficult Children and Their Parents". He's a Vice Dean, Full Professor, and Department Chairman at a prestigious university, and has received numerous awards from various groups, and has appeared often on mainstream media. He's not some fly by night practitioner of woo that I would expect such claptrap from.

But now I'm going to address the good doctor directly.

Harold, I may be a simple country doctor in flyover country, but I gotta tell ya. Your reputation alone isn't going to get you thru this one. It's time to "man up", take the hit, and admit that you got this whole campaign totally wrong. Everyone can make a mistake, and you made a big one. Being "edgy" doesn't cut it when the ads going out in your name are full of untruths and are frankly unethical in their demeaning portrayal of those with a variety of conditions. Accept responsibility, apologize sincerely, and go on. Do so, and people will listen and be willing to start a dialogue with you. Keep delaying, and this will only get bigger. You've succeeded in uniting and galvanizing widely disparate groups of people against this campaign, and secondarily against you.

Be the physician your record would indicate you have been. Do the right thing.

Tuesday, November 27, 2007

Spanking Bad, but Shocking Still OK

In Massachusetts, it's a good day to be a kid. That is, unless you're an autistic kid.

A story in today's Boston Herald online edition details how the state legislature is set to debate outlawing spanking of any kind in the state, including in one's own home. As stated in the article:

...If signed into law, parents would be prohibited from forcefully laying a hand on any child under age 18 unless it was to wrest them from danger, lest they be charged with abuse or neglect. ...

This would make Massachusetts the first state in the US to ban spanking. Massachusetts has long been known to be a very liberal state. And this proposed ban on spanking is evidence of that bent. Inexplicably, however, that liberal concern of the state for the welfare of children doesn't exist if you happen to be on the autism spectrum.

As this article in the online Village Voice pointed out, at the Judge Rotenberg Center in Canton, Massachusetts, administering electric shocks to autistic students in this residential "school" is an everyday occurrence.

...The only thing that sets these students apart from kids at any other school in America (aside from their special-ed designation) is the electric wires running from their backpacks to their wrists. Each wire connects to a silver-dollar-sized metal disk strapped with a cloth band to the student's wrist, forearm, abdomen, thigh, or foot. Inside each student's backpack is a battery and a generator, both about the size of a VHS cassette. Each generator is uniquely coded to a single keychain transmitter kept in a clear plastic box labeled with the student's name. Staff members dressed neatly in ties and green aprons keep the boxes hooked to their belts, and their eyes trained on the students' behavior. They stand ready, if they witness a behavior they've been told to target, to flip open the box, press the button, and deliver a painful two-second electrical shock into the student at the end of the wire. ...

So, as the Boston Herald notes, laying a hand on a child forcefully in any manner would earn you being charged with abuse or neglect, while in the Judge Rotenberg Center (JRC) withholding food and shocking kids is considered therapy. And if a small shock doesn't get the desired result, then just increase the level of shock.

...They still withhold food from some students as an aversive, but shocks are their main treatment. The school began using electric shock in 1989, but the device they first used, called SIBIS, was so weak that many students grew accustomed to it, eroding its effectiveness. So Israel developed the GED, which he registered with the Food and Drug Administration in 1995. (The GED was classified in such a way that it only required FDA registration, not approval.) When students grew innured to that, Israel brought forth the GED-4, three times as powerful as the original GED. That version is not registered with the FDA, which now says the Rotenberg Center is exempt because it's only using the machines in-house. ...

And although Dr. Israel, the founder and head of the JRC, justifies the use of involuntary shocks because of self injurious violent behavior on the part of students, its use is not limited to that.

...But the GED isn't only used when a life is at stake, or when a student hurts himself or another, but also for "noncompliance" or "simple refusal." "We don't allow individuals just to stay in bed all day," says Dr. Robert von Heyn, a Rotenberg clinician, in a video for parents. "We want to teach people. So we may use the GED to treat noncompliance." Other behavior that doesn't appear dangerous also could earn a zap. While it might seem excessive to shock a student for nagging his teacher, Israel asks, what if the kid nags all the time, every minute, every day? The nagging interferes with his learning, so he can't learn self-control and develop normally. JRC's choice is to shock him, stop the nagging, and let him learn. ...

As a parent, I am not the biggest proponent to spanking. Generally speaking, I try my hardest to avoid it, and consider each episode at least partly a failure of parenting on my part. But I also think that parents need to be given latitude in raising their own children, and that a swat to the butt is not the worst thing in the world.

I believe that I know the difference between a swat on the butt and child abuse. Unfortunately, it would appear that the state of Massachusetts has gotten it entirely backwards. A swat on the butt will get a parent arrested if this law passes, but starving kids or jolting them with electric shocks for non-compliance in school gets you paid hefty sums of money from the state.

Monday, November 26, 2007

Why I Love Thanksgiving

photo credit-urtica

creative commons license

I've been in a bit of a blogging slump lately. Part of it is having some problems with Buddy Boy that are consuming some time and energy, part is just general busyness, and part is just not feeling like I had anything to say.

Kim over at MommyHood - The Adventures of Kim and Alex wrote an entry yesterday on The culture of too much, which I largely agreed with. She did a good job of highlighting how all the people that try to sell us stuff have over commercialized Christmas, and we (collectively) fall for this hook, line, and sinker. I like Kim's blog, as it is both real and funny as all get out. But one thing in her post got to me. She lumped my favorite holiday of the year, Thanksgiving, in with this.

First, Kim complains about traveling over Thanksgiving:

First, there’s too much travel. Too many lineups, too much need to travel from one of the country to the other for the weekend. If you ask anyone what time of the year that they wouldn’t want to be at the airport, it would be Thanksgiving weekend.

While I admit that flying over Thanksgiving is not something that ANYONE would like to do, what's so bad about people wanting to reconnect with family to celebrate and give thanks? I can think of lots of worse ways to spend a weekend. Too often we get caught up in our own little lives, and the day to day running about. It's nice to dedicate a day to getting together with loved ones, having a good time, and giving thanks for all the good that we have in our lives. In the past this meant going down the road to gather at a relative's house. Now it may mean driving hundreds of miles or flying thousands. Such is the byproduct of a very mobile society. But I see it as a good thing that we still make the effort to maintain these familial connections, even though greater effort is involved.

Next, Kim attacks the menu:

Then there’s Thanksgiving itself. Too much food, too much turkey, too much football. There’s a code that needs to be followed in order to have a proper Thanksgiving. Turkey? Check. Stuffing? Check. Cranberry sauce? Check. Pumpkin pie? Check. Do you eat these foods at any other time of the year, other than potentially Christmas? Probably not, because these are identified as Thanksgiving foods.

The Thanksgiving menu is one of my favorites. I would eat this menu every week, if I could. I would, however, then weigh upwards of 450 lbs (205 kg./32 stone). I'm always sorry when the leftover turkey runs out. Also the leftover pumpkin pie.

The menu of what Americans eat at Thanksgiving is also very regionally based. Although there are some staples (as mentioned above) that most people have, there are a lot of regional variations, both in what other items are on the menu, as well as how the items are prepared. I once heard a man interviewed on the radio that had studied this. He claimed to not only be able to tell you the region of the country you were in by what was on your Thanksgiving menu, in some cases he could pinpoint the actual county that you resided in. That's pretty impressive.

Sure, I overate with everyone else on Thursday. I know that that's not a good thing, from a health standpoint. But I see overeating with family one day a year a lot less harmful than the commercialization of Christmas.

Thanksgiving is a holiday that I don't have to worry about offending people. With Christmas, I always have to think first about wishing someone Merry Christmas, so as not to inadvertently offend them (if they're not Christian). With Thanksgiving, I have no such constraints. How can anyone object to being thankful?

Thanksgiving is the holiday that has been the least commercialized. Sure, it's good for the airlines and those who produce turkey and cranberry sauce. And Hallmark and others sell some greeting cards. But beyond that, there isn't very much commercial hype involved. In fact, I think that of all of our holidays, Thanksgiving is one that people from a hundred years ago would most identify as being similar to how they celebrated. So, you can diss what they've done to Christmas, but don't mess with Thanksgiving.

Saturday, November 10, 2007

Today's saying

Every day at work one of my co-workers puts a saying on the "white board". I walked in today to find this up there. Needless to say, I had a smile on all day.

Friday, November 2, 2007


I don't think I'm going to leave these pics up a long time, but don't think it will hurt to have them up a little while.

We all went out "Trick or Treating" (those outside of the US, I'll let you Google it) for Halloween. Sweet Pea was Raggedy Ann, and Buddy Boy was Bill Nye, the science guy.

I was happily surprised that Sweet Pea decided to go with Raggedy Ann, over her usually preferred princess outfits. Liz sewed several different borders on the costume until she was satisfied that it looked just right.

We really had a lot of fun with the Bill Nye costume. My sister is a chemist, so she served as supplier of the lab "schwag". In addition to the usual pipets, gloves, and the like, his candy container was a giant beaker labeled "Bill Nye's Sugar Experiment" on the side, and with gradations that said "Not enough sugar, Just enough sugar, and Too much sugar" on the side. My sister got some ideas and bits from some of the geeky guys she works with (who now have a picture of Buddy Boy up in their lab).

As might be expected, not everybody got his costume (even though the ID we made him had a "Nye Labs" logo, and his name Bill Nye with Science Guy underneath it. Those that got it loved it. And of course Buddy Boy, who considers himself a scientist, loved it (this morning he told us his new name is Bill Nye the second.

At one stop Buddy Boy broke into the Bill Nye theme song (I cut him off after he got to "Science Rules!" and then continued with "Bill Nye the Science Guy is brought to you by ..."), and at another he made a point of mentioning "That's real Parafilm, you know".

All of us had a lot of fun, and the kids didn't even notice when Liz and I were pilfering some of the chocolate for ourselves. Both of them did a good job with their manners, and Buddy Boy even was able to tell a joke (it's somewhat of a local Halloween tradition that when you ring the bell and say Trick or Treat, you're also supposed to tell the people a joke in order to get your treat).

The joke was the old "knock, knock" joke:

Knock, knock.

Who's there?


Boo who?

Boo who, why are you crying?

At least neither of them went as James Watson. Now that would be scary!

Tuesday, October 23, 2007

A Twisted Life

photo credit-jurvetson
creative commons license

So, having read a little bit more about James Watson after reading the comments to my last post, I thought I would add a bit more background about who exactly "Honest Jim", as he likes to be referred to, is.

Watson was born on the south side of Chicago in 1928, to relatively poor surroundings. He was accepted to the University of Chicago at the age of 15, and graduated with a degree in zoology. By this time he was interested in genetics. In 1948 he started working on a Ph.D. in zoology at Indiana University, working on bacteriophages (viruses that infect bacteria). He spent that summer at the Cold Spring Harbor Laboratory, which he would later in life lead.

Watson's project at Indiana involved using x-rays to inactivate the bacteriophages. He received his Ph.D. in 1950, and moved to Clare College, Cambridge, where he shared an office with Francis Crick. They both shared an interest in finding the structure of DNA, and wanted to beat Linus Pauling in being able to do so.

Meanwhile, at another London college, Kings College, Maurice Wilkins and Rosalind Franklin were also working on this problem. Franklin, a rare female in a male dominated field, preferred to work alone and not share her work too much (perhaps this was rooted in a belief that her work would be "ripped off"). She also preferred a methodical approach, waiting to publish findings until they were confirmed.

Watson preferred taking chances and a more haphazard approach. At one point Watson and Crick were given an x-ray diffraction photo of DNA that Franklin had taken with Watson. Although this was given to them without Franklin's knowledge or consent, it is debated whether anything underhanded occurred in this taking place, though by modern standards Watson was at the very least unethical in his treatment of Franklin. In any event, Watson later acknowledged that when he saw the photo that an "ah ha!" moment occurred, enabling him to correctly guess at the structure of DNA.

Whether the data was stolen or not, only a minor footnote was made in acknowledgment of Franklin's crucial contribution to Watson and Crick's work. As Crick (who was friends with Franklin before she died) later admitted, "I'm afraid we always used to adopt -- let's say, a patronizing attitude towards her."

Watson and Crick, as well as Wilkins and Franklin, published articles in the same issue of Nature, describing the structure of DNA. It is likely that no one at the time knew the far reaching effects that their discovery would entail.

In 1962 Watson, Crick, and Wilkins all shared in the Nobel Prize. The Nobel Prize rules stipulate that all recipients must be alive, and that no more than 3 can share in any one prize. Conveniently, Rosalind Franklin had died of ovarian cancer in 1958,at the age of 37.

I think a few important things are important to look at, in interpreting subsequent actions and remarks made by Watson over the years. One is the time he spent at Cold Spring Harbor Laboratory in the summer while at Indiana University. Another is his making a major scientific discovery at a young age by "taking chances", and not working methodically. Finally, one of Watson's sons is schizophrenic.

Cold Spring Harbor Laboratory (CSHL) was one of the prime centers of the eugenics movement in America from 1910-1939. Although that aspect of its nature had been closed down by the time Watson arrived, one may assume that many of the ideas that were promulgated there still existed, and that he would have been exposed to the mish mash mixing of science and racism at a time when he was just beginning to develop intellectually. A history of eugenics in the US (up to the early 20th century) can be found at the CSHL website here.

After Watson's Nobel Prize, he capitalized on it by publishing 3 textbooks, which made him rich. To a poor kid from Chicago, this could only have reinforced the advisability of "taking chances" and cutting corners when coming out with theories. His earlier brash methods had payed off, and set him up for life.

Watson went on to head Cold Springs Harbor Laboratory. He was laboratory director from 1968 until he turned 65, in 1994. From 1994 until 2003 he served as president, and since 2003 he has been chancellor of the lab. The lab has grown by leaps and bounds under his direction, as he seems to have a flair for attracting donors, as well as having the good fortune to oversee a genetics lab in an age of genetics research. After this month's debacle of his racist comments in England, the board of directors has removed him from administrative duties as chancellor. Watson served as head of the NIH human genome project for a time, but was forced out when he objected to the patenting of specific human genes. While I applaud this position, I suspect that it was taken from an ideological standpoint of wanting to "perfect" the human race in as quick a fashion as possible, and not from either an economics or ethical point of view.

As was detailed nicely in 2003 by Ralph Brave here, Watson is a modern day eugenics proponent. He not only wants to "cure" such diseases as autism and stupidity, he wants to inject new genes (from any source-animal, plant, lab made) into human gene lines (so called human germline genetic engineering).

As detailed in Brave's post, at a 1998 UCLA conference, Watson said,

"And the other thing, because no one has the guts to say it," Watson informed the 1998 conferees, "if we could make better human beings by knowing how to add genes, why shouldn't we do it? What's wrong with it? Who is telling us not to it?"

This goes far beyond manipulating genes in specific individuals to modify or cure specific disease states.

Watson's firm basis in wanting to "improve" the human race, and his wanting to use any method available to make it palatable to the public, is illustrated by the following (also from the Brave article):

But what exactly are Watson's eugenics intentions? How would he design better human beings? The germ-line intervention that he and other advocates most often mention is improvements to the immune system. There is a gene, for example, which provides absolute resistance to the AIDS virus. If it were possible to safely implant such a gene into an embryo, who would object? Or a gene that similarly protected someone against SARS or an even more deadly emerging infectious disease?

Such germ-line alterations are viewed cynically by Watson, though, as a means to other ends: the wedge that will open the door to further engineering. "I think that the acceptance of genetic enhancement," he writes in his new book, "will most likely come through efforts to prevent disease."

The range of potential genetic enhancements at this point is almost entirely a matter of speculation. But Watson is not shy about suggesting his own eugenic targets. In a British documentary on his life and work to be broadcast in the U.S. this fall, Watson announces that he'd like to genetically treat the 10 percent of children whom he considers "stupid" and prevent the birth of ugly girls. "If you really are stupid, I would call that a disease," Watson says. Furthermore, "People say it would be terrible if we made all girls pretty. I think it would be great."

Watson doesn't seem to care if some lives are lost in his quest, and doesn't even flinch from describing himself as a eugenicist:

As with other biomedical innovations, even if germline engineering proves successful in other primates, the same technique applied to humans would have unknown results. That's why, Watson writes, "the start of human experimentation will require resolute courage; the promise of enormous benefit won't be fulfilled except through experiments that will ultimately put some lives at risk."

"My view," he concludes, "is that, despite the risks, we should give serious consideration to germ-line gene therapy. I only hope," he plaintively appeals, "that the many biologists who share my opinion will stand tall in the debates to come and not be intimidated by the inevitable criticism ... If such work be called eugenics, then I am a eugenicist."

It's no wonder that legitimate scientists cringe whenever Watson opens his mouth.

Now there is certainly a whole group of scientists that feel that all scientific research should be allowed to proceed, no matter what, and that they should not be shackled by political and ethical concerns. I heartily disagree with the divorcing of ethics from scientific endeavor (the ultimate example of this would be the experiments undertaken by the Nazis and Japanese during WWII), but Watson goes even further in his comments. He finds little nuggets of information in his research, then extrapolates something completely different than what really exists. It's like looking at chicken nuggets, and deciding that all chickens are flat oval blobs.

photo_credit(nuggets)-yoppy, chicken-LollyKnit

creative commons license

If he had commented only that genetics may show us that some populations are smarter than others, then that might be something that would be worthy of scientific scrutiny and debate. Legitimate criticisms could be made of tests of intelligence (domains they cover, ways they are administered, bias in interpreting results, etc.). Also it would be valid to question what purpose there was in even measuring such things. There will always be a great deal of variation within populations, and even if one population were to be shown on average to be more intelligent than another, it would not tell you anything regarding specific individuals.

However, Watson can't resist using little scientific nuggets of information to prop up his eugenic racist, sexist, and homophobic utopian vision he probably ingested during his summers at Cold Spring Harbor when he was young. The comment that got him into trouble most recently was the following:

The 79-year-old geneticist said he was "inherently gloomy about the prospect of Africa" because "all our social policies are based on the fact that their intelligence is the same as ours - whereas all the testing says not really." He said he hoped that everyone was equal, but countered that "people who have to deal with black employees find this not true".

But this isn't the first time Watson has said something so incredibly stupid. He's had a lot of similar things to say in the past, such as the following quote from a BBC documentary in 2003:

"It seems unfair that some people don't get the same opportunity. Once you have a way in which you can improve our children, no one can stop it. It would be stupid not to use it, because someone else will. Those parents who enhance their children, then their children are going to be the ones who dominate the world."

This is from an interview that was published shortly before the most recent dust-up:

He talks of the “horror and destruction” of life that can arise from having a severely autistic child, and hopes that by diagnosing autism early, “we might prevent some [autism-prone] families having subsequent children”.

According to this account of a lecture Watson gave at Berkely in October of 2000,

Witnesses were flabbergasted when the 72-year-old discoverer of the double helix suggested there was a biochemical link between exposure to sunlight and sexual urges. "That's why you have Latin lovers," Watson said. "You've never heard of an English lover. Only an English patient."

In a lecture hall jammed with more than 200 Berkeley students and faculty members, Watson showed a slide of sad-faced model Kate Moss to support his contention that thin people are unhappy and therefore more ambitious.

"Whenever you interview fat people, you feel bad, because you know you're not going to hire them," Watson said.

I can't find a quote that says so, but it appears that Watson would want to sterilize all people over a certain weight, too.

Much of the Cold Spring Harbor Lab's emphasis lately has been on finding the genetic basis of autism and schizophrenia. Watson's son, Rufus, now 37, has been diagnosed as schizophrenic, and this undoubtedly has been much of the driving force behind Watson's efforts.

This year a new "Psychiatric Genomics Center" was founded at CSHL specifically to study the genetic basis of schizophrenia, bipolar disorder, and autism.

According to this article, what Watson would do with genetic information is absolutely clear:

And he has publicly revealed that he wishes a genetic test had been available which would have shown that his son Rufus would turn out to have schizophrenia. "I think I would be a monster to want someone to suffer the way he has... so, yes, I would have aborted him," he once said.

While Watson has spent a lot of money and time on trying to find the genetic cause of autism and schizophrenia (so he can prevent anyone that carries these genes from reproducing, and aborting anyone that happens to slip thru the cracks), I did find one quote from Watson that I didn't find offensive. In talking about his son in an interview with The Guardian he said:

My wife and I have a schizophrenic son. We didn't want to accept this for 30 years, so we put him under great pressure when we shouldn't have. He just wanted to be looked after, and we didn't respect that. We tried to make him independent.

If only the vast majority of Watson's life hadn't been spent in trying to "perfect" the human race thru eugenics, there might be some hope for him.

Friday, October 19, 2007

Twisted Logic

photo credit-mknowles
creative commons license

Dr. James Watson, 79, who described the structure of DNA with collaborator with Dr. Francis Crick in 1953, is in the news again. He was supposed to speak in London today to a sold out crowd, but the invitation was withdrawn after some remarks he made.

According to a story reported online in The International Herald Tribune Oct. 18th, 2007

...In its profile of Watson, The Sunday Times Magazine quoted him as saying he was "inherently gloomy about the prospect of Africa" because "all our social policies are based on the fact that their intelligence is the same as ours — whereas all the testing says not really." ...

Dr. Watson claims he was misquoted (which is a common occurence in the press), and said

..."I cannot understand how I could have said what I am quoted as having said," he said. "To all those who have drawn the inference from my words that Africa, as a continent, is somehow genetically inferior, I can only apologize unreservedly. That is not what I meant. More importantly from my point of view, there is no scientific basis for such a belief." ...

And that might be the end of that, except that the good doctor has a history of making other statements, such as

... while he hopes that everyone is equal, "people who have to deal with black employees find this not true." ...

...Watson has caused controversy in the past, reportedly saying that a woman should have the right to abort her unborn child if tests could determine it would be homosexual.

He also suggested a link between skin color and sex drive, proposing a theory that black people have higher libidos. ...

I think it might be a little harder for Jimmy to wiggle out of those quotes.

A quick search of the web brought up some other interesting things Watson has said. Keep in mind when reading the next quote that Watson is reported to have a son diagnosed with schizophrenia. This quote came from an interview he gave in 2006.

...“We can dissect the essence of schizophrenia, bipolarism and autism to find out how the brain doesn’t work. The essense of schizophrenia is the brain can’t function. You are seeing the essence of stupidity. The same systems tweaked slightly the other way will be the essence of intelligence. We can find out why some people can play piano better than others—just a better brain, you have to be bright to play Rachmaninoff. My goal would be in ten years everyone with a mental disease would get DNA diagnosis first.” ...

In the American Renaissance on Oct. 14th, there was an interview quote that said

...He talks of the "horror and destruction" of life that can arise from having a severely autistic child, and hopes that by diagnosing autism early, "we might prevent some [autism-prone] families having subsequent children". ...

I think that Dr. Watson is a very good scientist, who has discovered some great things.

I also think that just because a person is intelligent, doesn't necessarily mean that they are smart, logical, or compassionate. Unfortunately Watson does not seem to have the ability to see beyond his own prejudices.

I wonder what he will say if he shows up with Simon Baron-Cohen to the Cambridge Union Society on Tuesday, Oct. 23, 2007?

Tuesday, October 16, 2007

Wizards and a More Colorful Kansas

In "The Wizard of Oz", Dorothy is transported to a strange place, where every thing is the same, but different. This place is exciting and colorful, but also somewhat scary to her. She wants to get back home (to normalcy-represented by a dreary black and white Kansas) but doesn't know how to get there. In her quest to get back home, she is directed to a wizard, who doesn't initially think she has any way of getting back to Kansas, but he doesn't want to disappoint her.

The wizard puts on a big pyrotechnics display to show how great he is, gets angry at Dorothy when she questions him at all, and promises her if she just does X (get the wicked witch's broom) then Y (getting to go back to normalcy) will happen. Wanting desperately to go home, Dorothy does as the wizard says.

While it's not a perfect analogy, I often think of autism in terms of this movie. When parents first find out that there kid is "different", they don't stop to look at all the wonderful ways that that difference can be good. They don't look at all the ways that their child is essentially the same as all other kids, just different. And so they focus on a quest to "get back to normalcy". In doing so they are guided by a lot of wizards who give false hope to them. These wizards may or may not believe in their false magic, but promise parents that if "they only do X" then they will get back to their precious normalcy.

When the magic doesn't work, they are scorned if they question the wizard. If they do get back to some sense of normalcy, then the magic was obviously responsible.

But once in a while a good witch comes along. One who can show you that you had the capacity to "go back home" all along. All you had to do was look inside yourself to find the person you were, and look at your child and see the person they are. The good witch helps you to see that Kansas doesn't necessarily have to be a dreary black and white place. Kansas can be colorful. There's room in Kansas for all types of people, and if you had looked hard before, you would have seen some of them.

Kevin Leitch is one of those people that have helped to show me that Kansas can be a colorful place, and that we are all the better for it. He has provided a place for all types of people to congregate, and has helped to show that acceptance and inclusion are the keys to a better society for all of us. And I will always be grateful to him for what he has done.

And all the flying monkeys in the world can't change my mind.

Monday, October 15, 2007

Mainstream Media and Responsibility

photo credit-Todd Baker
creative commons license

What responsibility does a mainstream paper have for what is published on its online edition? Either the Chicago Tribune thinks that normal journalistic standards do not apply, or it is extremely lazy when it comes to enforcing them.

For the second time in a month (see my previous entry here), the Tribune ran a story on its online edition that was factually unsound, full of scare tactics, and downright kooky regarding autism. The story, "Autism recovery stories: Mercury poisoning?" appeared on a Chicago Tribune blog that is part of the Chicago Tribune web edition. The story appeared under the byline of Julie Deardorff, who is the writer of the blog "Julie's Health Club", which is regularly included in the Tribune's web edition.

Now I know that if anyone from the Tribune comes here to comment, they'll most likely say that blogs are expressions of an individual's opinion, and thus are free from the usual requirements of things like the Society of Professional Journalists Code of Ethics. And while I feel that the ethics and responsibilities of personal blogs are still evolving, and that the public mostly expects that personal blogs will have to be filtered somewhat to figure out what is fact and what is purely personal opinion, I believe that when a journalistic entity (e.g., the Chicago Tribune) puts its imprimatur on a blog and includes it in it's web edition that professional ethics should apply. Otherwise all of what is printed in the Chicago Tribune (whether online or in print) becomes suspect as to its veracity. Unless of course the Tribune wants to start doing stories on Elvis sightings and Alien abductions, and change its name to the "Chicago Enquirer".

It's not like the Tribune is linking to random outside blogs of interest. The blog is one of many hosted on the Tribune's site, and Deardorff, the author of the blog, has a tribune e-mail

Deardorff starts out this article repeating some of the same tired old falsehoods regarding mercury and autism.

For almost four years, no one could explain to Julie Obradovic why her daughter Eve (left) was suffering from "non-stop ear and bronchial infections, bladder infections, severe constipation that would leak out in water, eczema, loss of skin coloring (inability to burn or tan), chronic yeast infections, insomnia, seizures and staring spells."

But when Obradovic, of Homer Glen, Ill., discovered Eve had been exposed to mercury and the symptoms were signs of mercury posioning, she decided to investigate.

Here's her story, the fourth in an occasional series that looks at how parents have tried to treat their autistic children.

The very first line from the SPJ's Code of Ethics states:
— Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.

Now it wouldn't take much investigation to see that the diagnostic criteria for autism have almost nothing to do with the symptoms stated in that first paragraph of the story. A quick Google search for "DSM IV autism criteria" led me here. A quick Google of "mercury poisoning criteria" led me to the CDC here. A perusal of the two collection of symptoms would quickly let one know that there is very little, if any, overlap at all. A fairly complete comparison of the two was done by Kevin Leitch and can be found on Wikipedia here. Of note, Kevin Leitch doesn't even consider himself a "professional" blogger, yet he includes references to scientific articles, whereas Ms. Deardorff does not.

Later in the article, Ms. Obradovic continues talking about her daughter's illness:

At about age 3 and 1/2, I learned that she was injected with mercury at her most vulnerable stage of development. I didn't really know what to make of that, and decided to investigate. Months later, after exhaustive research, I was able to confirm that almost every single symptom of what was wrong with her was a symptom of mercury poisoning. It absolutely defied logic to believe that was a coincidence.

Ms. Obradovic is obviously referring to the "controversy" as to whether the mandatory childhood vaccines (and the low amounts of thimerosal-a form of mercury-that was long ago eliminated from them) cause autism. But Ms. Deardorff doesn't explain this at all in her article. Perhaps she thinks if she doesn't point this out that she doesn't have to also explain that all credible scientific evidence refutes this thoroughly.

Many credible, well researched, and well documented responses were written to the article, but Ms. Deardorff refused to either retract her post, or even to admit in any way that she had failed miserably in researching the article.

For those that think I'm being too hard on Ms. Deardorff, I return to the fact that hers is not a private blog located randomly on the net, but a blog sponsored and hosted by a major paper in a major US market. And I would hope that Ms. Deardorff would not claim ignorance of journalistic ethics, as her bio states that she has a degree in journalism (as well as an MBA).

Even if one feels that all blogs (including those sponsored by a major newspaper) are not subject to the same standards as a newspaper, one might consider what this online list of blogger ethics has to say:

• Never publish information they know is inaccurate -- and if publishing questionable information, make it clear it's in doubt.
• Distinguish between advocacy, commentary and factual information. Even advocacy writing and commentary should not misrepresent fact or context.
• Admit mistakes and correct them promptly.
• Disclose conflicts of interest, affiliations, activities and personal agendas.
• Deny favored treatment to advertisers and special interests and resist their pressure to influence content. When exceptions are made, disclose them fully to readers. ...

Unfortunately, Ms. Deardorff doesn't look good even when her actions are held up to this lesser standard of practice.

I hope that the Chicago Tribune is just ignorant of what is happening in its web edition, and has not willfully allowed such unsubstantiated rubbish to be published under its masthead. The history of the Tribune deserves better, the legitimate journalists on the Tribune deserve better, and most of all, the readers of the Tribune deserve better.

n.b. After I had most of this post written I discovered that Orac (who wrote some of those well thought out responses on the Tribune site) had already blogged on this article. Since I had already written most of mine, I decided to go ahead with this anyway. I encourage one and all to go to Orac's site and read what he had to say about this.

Thursday, October 11, 2007

Magical Thinking

photo credit-D'Arcy Norman
creative commons license

Recently in the Chicago Tribune a story appeared entitled "Autism and the adopted child". I have to admit the title caught my eye, as the father of an adopted child that is autistic. The story referred to a blog post by a mom by the name of "Pickel" that was entitled 'Finally My Son is..."Finding the Words" '.

I should have known that my blood pressure was going to rise as I read this story. The first paragraph starts out:

Since we adopted our son from Russia in the summer of 2005 we have struggled with him. From his fingertips to his toenails the child is a medical mystery and developmental mess.

Anyone that starts off referring to their son as "the child" and as a "developmental mess" is digging themselves a hole in my book. I understand when adoptive parents don't bond immediately with the children they adopt. But it's been two years! When will she consider him her son?

Did we have any clue when we adopted him? Sure, some. We knew he would be delayed because most institutionalized children are. However, just before he turned 3 the local school district told us that they estimated his developmental age to be between 13 and 18 months. We were floored.

Little Pickel has been diagnosed with Institutional Autism, H Pylori, Severe Gastritis, food allergies, Gross and Fine Motor Delay, Receptive and Expressive Speech Delay, Post Traumatic Stress, Separation Anxiety, and Sensory Processing Dysfunction. He has also had three surgeries; ear tubes and 2 GI scopes.

He is only 4.

Oh, OK, I get it. This is one of those pity party pieces. What she really wants to say is "Poor me! I didn't get a perfect kid. I was willing to put up with a couple of weeks of inconvenience, but not two years!" Well, life doesn't work that way. When you sign up to be a parent, "You get what you get, and you don't throw a fit" (as they used to say in my son's 1st grade classroom).

The first several months with Little Pickel were pure hell. He had night terrors that lasted 45 minutes to an hour every night (he still has these 2-3 times a week). We discovered double ear infections that resulted in ear tubes. We also discovered some creepy crawlers that made the trip home from Russia with us. They were NOT very welcome in our home.

Developmentally, he did not progress quickly. By his 3rd birthday he had only about 100 words and could not put phrases or sentences together. He was just beginning to run without looking like an otter (or falling all over himself) and he screamed at me every time he tried to ride his tricycle (because he was so frustrated).

OK. So you rip a two year old from the only home he's ever known. Talk to him in a language he doesn't understand. And then YOU get upset when he expresses displeasure the only way he knows how, by screaming. And don't forget to complain that a few bugs came home in your luggage, and that your prize son isn't quarterback material.

We tried everything for him. We rid him of his H Pylori (a bacterial infection in his gut), we removed his problem foods (gluten, casein, bananas, oats), and we worked diligently on his sensory issues. Still, he seemed locked in his own world...screaming uncontrollably when things were not right, when I would back up the car instead of go forward, or if he could not have graham crackers to ease his tummy aches.

He had orange stools up to 10 times a day, acid reflux, gas that could light the entire house on fire, sleep problems so severe he was getting close to (maybe) 5 hours of sleep a night, no social skills, aggressive behavior so severe that I had to learn to physically restrain him or get hurt myself (or worse, allow him to hurt himself), and bum rashes so horrid we resorted to Bag Balm, a cream used for milking cows.

Is there a style manual out there that sets out that in order to describe how horrible your life with your special needs kid is, you have to describe their bowel habits and how violent they are? Her son had some GERD and food sensitivities, as well as the aforementioned ear problems. So do tons of other kids. So what? There's also lots of other things that kids have. Things such as asthma, physical disabilities, learning disabilities and emotional problems. That's life. Deal with it.

So, when we moved back to Chicago in the summer of 2006 from Russia it was like a weight had been lifted. He qualified for Early Childhood, we found the Pfeiffer Treatment Center and started him on a vitamin chelation* to rid him of his heavy metals, yeast, and to balance his bacteria, and our parents were both there to help us with him.

Since our move Little Pickel has thrived. One might say he is "Finding the Words".

I have said many times on my blog, Discussing Autism, that there is no cure for Autism. Because Little Pickel's diagnosis is Institutional Autism and not organic autism, he can be "cured" and he can recover. Unfortunately, there are hundreds of thousands of children with autism who will not be cured.

Now this is why I'm writing this post. Pickel comes out and says that her "Little Pickel" didn't have autism as a result of being poisoned by vaccines (he had 'institutional autism', which is supposed to be caused by gross neglect and lack of physical stimulation, not by toxins of any sort), but she goes ahead and takes him to someone who treats him with the same hocus pocus that they would use to remove all of the "toxins" from him. What sort of "magical thinking" is going on here?Why would anyone (parent or practitioner) do that? I mean, unless you were so totally corrupt as a practitioner that you would try to sell your wares to someone when even your standard goofy arguments (your kids were poisoned by vaccines/heavy metals/whatever) cleary didn't apply. And at the same time you have parents that are clearly so dumb as to accept that even though the cause of your kid's autism is totally different, you'll still use the same goofy treatments.

However, there are some children like Little Pickel who have been cured...and they have Autism.

The documentary, "Finding the Words" is their story. It is the story of eight "perfect babies", each given a grim diagnosis of autism spectrum disorder (ASD) as toddlers, whose grieving families fight prejudice, misinformation, and despair to get their children well again.

Written and produced by Elizabeth Horn Nelson, the documentary has really picked up steam because there are parents out there like me who have hope. Horn Nelson is also the co-founder and president of the Autism Recovery Consortium and even the Huffington Post picks her up. You can view the trailer for the documentary here

I'm sorry, which is it, Pickel? That you can't cure autism, or that you can? I love it when people can't even keep their stories straight.

According to Nelson Horn in a 2005 interview, "The first impression you get with this diagnosis is that you're on your own,'' Horn said. "Even though there were resources, there was no sense of direction anyone could give as to how to proceed.''

For over a year that is how we felt with Little Pickel. Then, when we had no where else to turn we found The Pfeiffer Treatment Center and finally got our answers. They were the only facility willing to perform biomedical testing for us. You can read a very scientific explanation here.

How much is Little Pickel talking now that we did a vitamin chelation? So much so that there are times he won't shut up! (Perhaps he should try out for "Autism, the Musical!")

He is constantly chattering about going to school and how much he likes his new teacher. He sings "Twinkle-Twinkle" loud and out of key as he is falling asleep. He is finally asking questions (but everyone is labeled as a she).

And occasionally from across the room or from upstairs I hear him yell..."Marcie, come here!" in a sing-sing song voice.

Could you punish a kid for that?"

Perhaps this is why so many people fall for all of the hocus pocus "cures" that are out there. They are uncomfortable with uncertainty. They can't handle that no one can tell them a definite reason that there child is autistic, and worse, that they can't offer them a cure. So when hucksters come along with "magic pills" that will make their kids all better they jump at it. It's reassuring. It gives you hope. And when you go to the doctor's office you have a built in pity party support group, where you can all play the game of trying to top each other in the "My life is worse than yours" game.

The only problem is that it's all a big house of mirrors. And to waste large portions of your time and money on such things is at best silly, and at worst abusive to your child who is getting unneccessary and unproven treatments.

Sunday, October 7, 2007

Sex and the Single Girl

photo by katielips
creative commons license

I was perusing a local autism listserve that I am on, and read this message from someone I don't know.

I haven't been on here for a while, but wanted to share something that happened today. I recently retired from teaching. My daughter, Amy, who is 35 and on the spectrum, has been my assistant for 16 years, since she graduated from high school. This is on a voluntary basis at a private school. Well, when I retired that meant that Amy was also out of a job. So we decided to look into a sheltered workshop. Amy is use to doing some office work and assisting me with the mundane work that all teachers hate. She has never done production work, but after touring the place she said that she thought she could do the work. Well, I didn't feel that the environment would necessarily be the best for her as she has a tendency to pick up behaviors from those she's around but I didn't express that at the time. But while we were standing in the shop talking to a staff member, a young man came up to us and was obviously attracted to Amy. He ask if she was going to work there and stuck out his hand to shake hands. We shook his hand and introduced ourselves. He said, "I'm going to ask her out." He then reached over and was about to give her a hug when the staff member stopped him and sent him back to his station. Oh, did I mention that Amy is very attractive and outwardly shows no signs of a disability? I couldn't help wonder what would happen if someone wasn't right there. This is my worst nightmare,since Amy is very compliant and vulnerable. So we are back to square one as far as a job for Amy. She's so talented I hate for her just to stay at home all day. Any suggestions?

I wanted to respond with either "Think you could find a nunnery to lock her up in?", "I think she's old enough to start dating", or the snarky "Good thing that staff member was right there, because I'm sure that that evil autistic man would have defiled your daughter on the spot right there, because we all know what hugs lead to". But I tick many people off on that list as it is, with my mad ramblings against quackery that some of them are inflicting on their children, and I would like not to be kicked off so I can show some of the newbies that not all in the "Autism Community"(tm) are off their rocker.

Now don't get me wrong, I understand to some extent where this parent is coming from. My (NT) daughter is only 5, but I am already shopping for a shotgun that I can clean when potential suitors come to call. I also understand the desire to protect one's autistic offspring from some of the exploitation that society can subject them to. So I can sympathize with the sentiment that one would want to take some precautions and make some preparations when introducing one's son or daughter to dating.

But give me a break! Her daughter is 35 years old, has worked, can express her own wants and needs, and from the sound of it mom has kept her from exploring any kind of relationships with the opposite sex at all. I know nothing other than what was written, and I have no idea if this woman's daughter was even interested in dating this man. But I think she deserves the courtesy of listening to her views on the subject, and she deserves to be in an environment where she can meet and mingle with people of both sexes, so she can form friendships and possible relationships.

I have no idea whether my son will ever want to marry (though I do know he likes blonds). But as hard as it may be, I am going to do my darndest to educate my son regarding sex, dating, and relationships with the opposite sex. I think one of the worst insults I could give him would be to presume that he is incompetent of forming and nurturing a relationship with someone else. Many in the world treat him as incompetent. The least I can do is to always presume competence, and do my best to support him.

Am I wrong? And what (if anything) should I post on that list? In the last two days since that was posted, there have only been suggestions regarding other places to look for employment. Noone else has questioned her actions.

Thursday, October 4, 2007

She's So Beautiful

These are the words that come out of 4 out of 5 people's mouths when they first meet our daughter, and it's been bugging Liz and I. It's not something that we think about every minute of every day, it's just one of those little things that bug us.

Why, you ask?

Well, we've asked ourselves the same question. Why does this comment rankle us and just not feel right? It's not that she's an ugly kid. In fact, she is very cute (you'll have to take my word for it, as I'm not going to post pics here that would fully identify her). She has a smile that lights up a room, and enough social skills that she could compete with a politician in working a room. And we don't dress her like she's in a beauty pageant. So what's so wrong about pointing out that she's a good looking kid?

Well, for one thing she's only 5 years old. And people have been saying this for at least the last 2 years. And I just don't think it's appropriate to talk about really young girls as "beautiful". At least not when you first lay eyes on them. There's something in the comment that just sexualizes this young child by referring to her as beautiful. I mean, isn't there anything else that you might say? Like "She has a nice smile", "My, she's well behaved", or just "Hi, Sweet Pea!". OK, so most days they'd be stretching the truth if they said she was well behaved, but we wouldn't mind.

Unfortunately, we think that that the base reason that people say this probably doesn't have to do with people purposely trying to make her a sexual object, but it's just as bad. We've come to the conclusion that people do this because we are white and Sweet Pea isn't (we are a family thru adoption-both of our kids are bi-racial African-American/Caucasian). So when people first encounter Sweet Pea being introduced as our daughter, they're naturally a bit taken back. I get that. She doesn't exactly look like us. So while they're feeling awkward they feel the need to say something nice, and so come out with the "She's so beautiful" comment.

While I don't really think people are trying to be malicious, I wonder why this particular comment comes out. I suspect that it might have to do with the "unofficial racial preference rank order for adoption", which places relatively more value (in decreasing order) on kids that are white, asian, hispanic, and finally African-American. Being of mixed race (with half being Caucasian) bumps you up a half notch. So I think a big part of this comment thing is just people feeling sorry for us that we adopted kids that were of "lower preference", and wanting to say something to make us feel better.

Thus far Liz and I just usually mumble something non-committal, and go on from there. We don't think that people are consciously being rude, so don't make a big deal out of it. We sometimes think that maybe we're just being overly sensitive, but the comment just has never felt right. So, dear readers, let me know what you think. And if you ever happen to meet us on the street, you now know what not to say.

Thursday, September 27, 2007

The Ivy Ceiling

What happens after high school?

That's one of many questions that many of us that have kids with disabilities think of. Will our kids be able to go to college, get a job, live independently? Will they be happy?

Two young people with disabilities enrolled in Florissant Valley Community College in the St. Louis, Missouri, USA area. They had hopes, dreams, and scholarships they had earned during high school. What happened to them is detailed in a story found here.

...It happened to Jennifer Adelsberger two years ago. She attended Florissant Valley for four years and was close to getting her associates degree in early childhood education. She has disabilities, Attention Deficit Hyperactivity Disorder and has difficulty in reading comprehension. But, with help, she graduated from McCluer North High School.

However, at Florissant Valley, Adelsberger couldn't get her degree because her advisor, she says, told her that she would not be able to graduate. She needs four classes to get her degree; a math class, two in student teaching and a fourth in class training with children.

After she was told she wouldn't be able to pass those classes, she left school and has been looking for work since. Her father, Larry, says she's had her heart set on being a teaching assistant, working with young children, and what happened at Florissant Valley has affected her outlook and personality. ...

It would appear that the math class is the stumbling block. I find it hard to believe that the school can't identify a tutor that could help her to get thru that one class. I'm sure it couldn't possibly be that this young woman looks and talks a little different from the norm, and they didn't want her student teaching. Surely there is no other discrimination involved. This is born out by looking at the other case, in which things seemed to start out just fine:

...For Jeremy Andert, the fall at Florissant Valley was much quicker. He too had an A+ scholarship and he graduated from Hazelwood West High School in the spring of 2006. In the Fall, he began at Florissant Valley, taking just a remedial reading class and physical education. It was to be an easy transition from high school to the rigors of college.

He was doing well in reading and physical education. In fact, his teacher had written him a mid-term report, indicating he was passing the class and was succeeding in school. ...

It sounds like Jeremy was approaching things in a realistic manner, and things were going well. His mom thought he was doing well, too (who wouldn't, having been given the satisfactory mid-term report).

...However his mother, Cathy Andert, had a meeting with a school advisor, who told a different story. Cathy says the advisor told her that she didn't care to have "retarded" students in her classes and she wasn't "having" it. Cathy says she was taken aback by those comments. ...

I think I would have been more than "taken aback" by those comments. Ms. Andert was much kinder than I would have been. The school, for its part, offered this lame response:

...Laura Sternman, a vice president of student affairs at Florissant Valley, says such comments are not the college's "attitude" taken on campus. Sternman says the college does all it can to help disabled students, saying the school is "very proactive" when it comes to such help. ...

Actions speak louder than words, and Florissant Valley's actions speak volumes. And so does its web site, where you can follow a link from this page called “You Should Know the Difference Between High School and College for Students With Disabilities.”

There are things written there, such as

A college education is a privilege instead of a right and special programs are not required

Students are responsible for their own behavior and inappropriate behavior is not tolerated

Students are expected to do the same work in the same time frame as all students

These hardly seem consistent with an institution that says it is doing all it can to assist disabled students.

For those that are not in the US, community colleges are 2 year public institutions that offer lesser than bachelor degrees, usually "Associate of Arts" degrees. Students can pursue various courses of study there, or use it as a stepping stone to a four year institution. As can be gleaned from the above, education at the college level is not governed by the same sets of rules that apply to education up to that point.

Various people on the web have commented regarding how some colleges in some instances are providing accomodations for students with special needs. But it appears that their legal responsibility is only to supply equal access (things like physical access, access for guide dogs, etc.), and there is no requirement for them to accommodate developmental or behavioral disabilities.

While some colleges seem to have greater outreach than others, it appears that at least some people at Florissant Valley Community College feel so emboldened that they can say that they don't want to have to deal with 'retarded' students in their classes.

If you wish to express your opinion to Laura Sterman personally, here is her contact information:

Laura Sterman
Vice President of Student Affairs
St. Louis Community College-Florissant Valley Campus
3400 Pershall Rd.
St. Louis, MO 63135


You also might want to copy your note to the president of Florissant Valley, Ms. Marcia Pfeiffer:

I could not find a public listing of the e-mail of Henry Shannon, Ph.D., the chancellor of all of the St. Louis Community Colleges, but if it follows their convention, it should be

Friday, September 21, 2007

How much accommodation is enough?

That was the question I asked myself when I read the story of Sophie Currier, an MD/PhD graduate of Harvard University who is asking for additional break time during testing for her medical license because she is breastfeeding.

The test that Currier is taking is the USMLE Step 2, a nine hour test that is the second of three tests that are necessary to become a fully licensed physician. A physician must pass at least the first two steps prior to starting their residency training. This test is usually taken one year prior to completing one's medical school education. That way, if you are not successful the first time, you have another chance to take the exam the following year, prior to starting residency. Evidently Dr. Currier took the test when she was 8.5 months pregnant the first time, and failed by a few points. If she doesn't pass the test this time, she'll have to delay starting residency for at least another year, until she passes the test.

I have a lot of sympathy for physician/mothers. Both jobs are very time consuming and tough, and juggling two full time jobs is next to impossible. One of my heroes during my internship year was a fellow intern who was a single mom to a 2 year old (her husband couldn't handle having a wife that was "smarter" than he was, so left her when she was in med school). We all tried to pitch in and help her out, but there was no doubt that that doctor mom fully pulled her share. She asked normal favors of us (as all friends would), but never asked for any special considerations because of her situation.

So my first inclination when reading the story was to think "Why couldn't the board give her some extra time to pump during the test? It's a 9 hour test, with only 45 minutes allocated to break time. Surely they could make some accommodation. I mean, this can't be a unique situation." But then I continued reading the article:

...Currier has already received special accommodations under the Americans with Disabilities Act for dyslexia and attention deficit hyperactivity disorder, including being granted permission to take the test over two days instead of one.

In the lawsuit, she was seeking an additional 60-minute break on each day. The board cited the need to be consistent in the amount of time given to doctoral candidates and said other nursing mothers who have taken the exam have found the 45 minutes of permitted break time sufficient. ...

I'm all in favor of her getting accommodations for her dyslexia and ADHD. But it appears that since she'll be taking the test over two days instead of one, then she'll have 4 hours of testing on one day, and 5 hours on another. She still has 45 minutes of break time that she can allocate over that time, to take when she wants. This may not be the extra hour of break time each day that she wants, but it appears on the surface to not interfere too badly with her breast feeding requirement of having to pump or feed every 3 hours. Also:

...The judge said the board offered Currier several special accommodations, including a separate testing room where she could express milk during the test or during break time, and the option to leave the test center to breast-feed during break times. ...

For its part, the USMLE (United States Medical Licensing Examination board) responded publicly on its website to the "Currier question" regarding breastfeeding during exams.

...How have you responded to Sophie Currier’s request for extra time to express milk?
As the papers filed in court show, NBME offered Ms. Currier a variety of comfort measures and personal item exceptions, such as permission to bring multiple, assembled pumps to eliminate the time involved in cleaning, assembling, and disassembling them; permission to pump milk while taking the test and on break time, with privacy within the constraints of exam security, in the individual testing room that she receives on account of her ADA disability. We also provided her with a sample schedule demonstrating how an examinee can flexibly manage the time to take a 20- to 30-minute break every three hours. ...

And I gotta tell ya, that's starting to sound pretty fair to me. But to give myself a little reality check before I ran my mouth off (since I am male, and therefore have never faced such a situation) I bounced this question off of a colleague of mine, herself an MD/PhD, who has small children and has breast fed. After thinking a bit, and without me even telling her the part about her getting to take the test over two days, she felt that the medical board had gone far enough. Indeed, she didn't even think they had to go that far. "Whisper Pump.", she said. To my blank look, she explained that the Whisper Pump is a wearable bra/pump contraption that you can wear while you work. It takes about 5 minutes to rig up, and pumps while you work. So it appears that Dr. Currier might not need any extra time at all in order to take the test and also pump.

I gotta tell ya, it feels a little uncomfortable arguing against someone getting an accommodation they say they need, especially when I have not walked in that person's shoes. But this one doesn't seem to pass the sniff test, and it would appear to me that Dr. Currier would spend her limited time better studying for her exam, rather than talking to her lawyer.

Thursday, September 13, 2007


And by a 7 year old, no less. I don't know if I should be happy about this or not. I was totally flim-flammed by Buddy Boy tonight.

Let me back up a bit. Buddy Boy has been getting into playing computer games, as well as games on a Game Boy that we bought about 6 months ago. I'm sure that many of you are very familiar with the concept of using "electronic bribery" in order to encourage certain behaviors (reading, doing math problems, cleaning room, etc.). Well, not being perfect parents, we also are not above using time on the computer/Game Boy in this manner. The combination of his obsession with our limiting access has made time on electronic games very desirable to Buddy Boy.

If left to his own devices, Buddy Boy would play electronic games every waking minute we let him. Obviously, being an old fart who's first computer game was "Pong" in high school, I don't think that's very healthy.

I'm the one who usually puts Buddy Boy to bed at night. We put him to bed at 7:00 PM, as he will consistently get up between 5:00 and 5:30 AM, no matter how late he goes to bed, and we want him to get a good night's sleep.

I put Buddy Boy to bed at the usual time. We went thru our usual bedtime routine, making sure he went to the bathroom and brushed his teeth, picking out what song he was going to listen to on his "boombox" all night long, tucking him in. Prior to bedtime Buddy Boy had elected to play in his room by himself, not wanting to play with me or Sweet Pea. When I left him to go and play hide and seek with Sweet Pea he was laying under his bed playing with some small squishy animal figures.

I didn't see the Game Boy, and asked him where it was. He straight faced said "I don't know, Dad". I proceeded to take 3-4 minutes to search for it in his bedroom, but couldn't find it, so just left, as I didn't want to break our routine too much.

Liz has been the one to usually take him to the bathroom later, after a couple of hours. She's taken over this duty from me, as she thinks my whispering to him at these times wakes him up and makes it harder for him to get back to sleep.

Well Liz went in to take him to the bathroom tonight, and he was laying under his bed playing on his Game Boy. He evidently had sequestered it away someplace near bedtime, and had been playing it from 7:00 PM to 9:30 PM, when Liz went in there.

Liz wasn't too happy with me.

This isn't the first time Buddy Boy has lied about something, and I certainly don't want him to make a habit out of it. But as I sit here contemplating this, I've got to think that the ability to plan out the operation, lie to my face when directly challenged, and carry it out quietly shows some real skills that could transfer quite nicely to a lot of workplaces.

Now if I can only work on some effective strategies for him to remember faces of people he's met...

Wednesday, September 12, 2007

Mostly Good

Well, it's been about two and a half weeks since the kids have gone back to school. We keep waiting for phone calls, frantic notes, or disparaging comments, but haven't had them. We think things are going (mostly) OK.

Buddy Boy starts this year in a self-contained "communications" classroom for about 2/3 of the day, with him going out to "specials" (art, music, computer, Spanish) with his gen-ed peers, accompanied by an aide. This is more time out of the self-contained class than he had last year, and we think this is a good thing. I don't think that inclusion is the end all and be all for everyone, and don't think that Buddy Boy would thrive if he was in the gen-ed class all day at this point. But we do feel that it's a good thing for him to get to know his NT peers (and them him), and to spend some time interacting with them.

His teacher in his communications classroom is one of his former aides from last year, who is now a teacher. She seems fairly eager to try to please us, and appears to be working hard, but it is also apparent that she is in a bit over her head (somewhat disorganized, frazzled at times). But her heart seems to be in the right place, and she seems willing to talk with us on how to improve things, so we're trying not to push too hard (don't want to make her jaded in the first semester on her own).

We have discovered a few problems, like the fact that Buddy Boy was getting 60 minutes of math instruction/week, vs. 300 minutes/week in the gen-ed class. This was totally unacceptable to us, and we're working with his teacher to get it a bit more equitable. Even though we work academics with Buddy Boy on a year round basis, we don't want him set up to fail by not challenging him appropriately academically.

There was also a problem with them reporting that he sometimes did not go to his proper classroom after being dropped off in the morning (all children have to be dropped off at the door-no parents can come inside). We countered (with a letter of support from his pediatrician) that it was unreasonable to expect him to always go directly to his class without getting distracted along the way, and that since we couldn't walk him to his class, they should have someone meet him at the door. They now do.

A more serious problem was when we discovered that they were "not exactly communicating well" with us. Buddy Boy was supposed to (according to a written agreement) supposed to be included for 15 minutes/day in the morning with the gen-ed class with an aide. His papers have been coming home indicating each day that he attended that class and was doing his work OK. It turns out that Buddy Boy told Liz last week that he wasn't going to that class in the morning. When his teacher was asked about this, she said something to the effect of "Well, he wouldn't settle down during that time period, and was disturbing the other kids, so we put him back in the communications room and he did the work there."


We can understand that if he's consistently disruptive, and after various strategies have been tried, that it may be determined that it's not the right place for him. We've tried suggesting a later time of the day, but we think that they don't have an aide to accompany him at other times, so this is why they picked first thing in the morning. We've also suggested they give him some time when the other kids aren't in there to just explore the room, but don't think they've done that. We aren't opposed to having them try different strategies, and even understand if he's temporarily removed. But to keep sending home slips saying he's going to the gen-ed class, and not indicating anything wrong, just irks us to no end. And it makes me wonder what else they're not telling us. But since he did mostly well for the second part of last year at this school, and everyone we talk too says he's doing OK, we're just writing it off to a communication breakdown at this point, and not getting into conspiracy theories.

Buddy Boy generally says that he feels good about school. But one thing I have noticed is a little increase in Buddy Boy's stress levels. He's acting out a little aggressively at home (soft head butts, slaps, and threatening language). It's nothing like he used to do, and he immediately reels it in when we call him on it, so I'm not too worried at this point. Everyone's entitled to a little extra stress when they start a new school year, start a new job, or anything else that's generally considered stressful.

Sweet Pea, meanwhile, has had a fantastic start to Kindergarten. She goes to school for the full day, and reports back excitedly each day what she's done, as well as who did what in school.

So all in all, I think things are going to be OK. We're going to keep a close eye on things, but as long as the teachers are willing to work with us, we'll keep working with them.