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 address-jdeardorff@tribune.com.

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.