7/03/2009

Autism, genes, and the argument that it's the mercury, stupid!

Mercury, specifically thimerosal, as a causal agent in autism, is still alive and animatedly being discussed at AoA. In an essay entitled, "Autism and Gene Research. Who Benefits?", Teresa Conrick sets out to explain it all to the AoA readers. More of her attention is focused on her belief that it's all about the thimerosal than on the decades plus reseach into the genetic components of autism. Her argument in essence is that money spent researching the genetics of autism is pointless when it's the thimerosal, stupid!

First, Conrick links the genetic research to big pharma: "Would it be a conflict to be on Eli Lilly's scientific board and thus push gene studies rather than environmental, including vaccines, including preservatives, in vaccines? Oh wait."

Yes, let us wait a moment. So,, it appears that Conrick is alleging that big pharma is pushing a genetic focus in order to avoid looking at vaccines as a culprit for autism. Now, this at the very least screams confirmation bias to me. At the worst, it demonstrates a tendency towards conspiracy theories.

Then, Conrick points to the study on Celexa that finds it ineffective at managing symptoms of autism and draws this conclusion since doctors still prescribe the medication (study just out, though, so one could give doctors a chance to look at the scientific evidence and make a decision): "Obviously gene research personally benefits Dr. Cook and the company that he "consults" for, Eli Lilly."

Alright, another point that has to be made at this point is that since Conrick buys into the thimerosal theory of autism for what appears to be ALL cases of autism since she posts the connection between thimerosal introduction and Kanner's case studies, it seems likely that she buys into the idea that chelation and possibly lupron might be therapies to "cure" autism. Never mind the lack of studies on these two treatments for autism. She's free to rebut that here, of course, if that is inaccurate.

There is the added difficulty that several of the "links" provided do not work. So, since the source material Conrick is using in inadequately cited, the links broken, one can't evaluate either the source material or Conrick's interpretation. When the links aren't broken, it becomes evident that rather than actually going to the studies themselves, Conrick relies on reporting of the studies, reporting that often is inaccurate and unduly inflammatory.

When discussing genetic counseling, Conrick draws this conclusion: "--In layman's terms, they wanted to develop a test so that parents or others could decide if they wanted to abort the pregnancy. To this day, there is still interest in this and why, in heaven's name, can this be a benefit to anyone?"

I see several problems with the conclusion, even with the link being broken:

1. Conrick believes thimerosal to be the culprit, so it makes little sense to be worried that a genetic test in utero could or would be developed. If it's thimerosal because of vaccines, in utero genetic testing wouldn't be possible.

2. Autism is unlikely to be monogenetic, like Down Syndrome, and therefore unlikely to be easy to test for, even if all the genes implicated in the spectrum were identified. Genetic counseling, as my husband and I had when our son was 9 and we were considering whether to have another child, is likely to consist more of a discussion of the relative risk of having another child with autism. As more genes are identified, it is theoretically possible that parents could undergo genetic testing to see if they have any of the genetic anomalies and the relative likelihood of having a child with these anomalies and consequently autism. It'd be, I expect, a crapshoot and a waste of money on the part of the parents.

3. Conrick's conclusion that looking into the genetics of autism serves no good purpose illustrates a fundamental failing in Conrick's understanding of scientists and the pursuit of scientific knowledge. If autism is genetic, it is important to understand which genes are implicated in the manifestation of which cluster of behaviors. Not because of or in search of a cure in and of itself. But because understanding things is what scientists do: the need to identify, quantify, explain, predict, and then control.

Conrick then argues that since it's been 10 years since scientists uncovered one gene related to autism and they're still looking for more betrays again two things: her underlying assumption that autism is mercury poisoning and therefore not genetic and her inadequate understanding of genetics.

She writes, "Well, since it is 2009 and they are still hunting, I guess these researchers needed that BIG ending- kind of like a mystery -- to keep that flow of beneficial gene money coming."

This betrays a cynicism so deep and a willingness to believe the worst of the scientists studying the genetics that anyone still straddling the fence thinking she came into this discussion open-minded has now fallen off that fence, assured that this was a hatchet piece at best, with no intent to look for anything that did not confirm her mercury poisoning theory of autism.


Conrick moves through more studies, posting links without ever showing in the article itself who did the study, where it was published, etc., and by providing broken links and links to newspaper articles continues to display her contempt for the genetic research. She couldn't be bothered to actually read the studies, cite them, or link to them. This works to downplay the seriousness and credibility of the studies themselves, as well as make it harder for anyone wanting to assess her arguments or the studies themselves.

Conrick writes of another study: "Oh boy, talk about a sly move. These researchers seem to know how to benefit by taking facts and trying hard to make them NOT vaccine-related but instead gene related...with miniscule emphasis on "environment". Very disappointing."

How would Conrick know this? The link is to a WebMD article on the study.

Conrick concludes her essay, pointing out that genetic studies don't benefit people like her child. And perhaps they don't demonstratively and personally help her child, nor will the genetic studies help my three children, in all likelihood. It is not their function to help children in the here and now, nor necessarily to help future children, other than in understanding how autism occurs. It may help to be able to categorize the ASDs more specifically and ultimately lead to targeted therapies that are more effective.

Conrick chooses to end her essay on a note of tangible bitterness and by once again making clear that the reason she thinks genetic research is pointless is because she firmly believes autism is not genetic but caused by vaccines: "It is to find elusive genes, dramatic titles, false promises and MONEY. It is also a way to dodge the vaccine issue that many want to deny. The reality of "serve to further the cause of research" really means to be tricked into a belief that has exceeded its time and a trust that has been lost. It is time to investigate the true factors that started and regressed our children into an autism diagnosis: vaccines, their ingredients and the connection to our children's immune, gastrointestinal, mitochondrial and brain dysfunctions."

She impugns the motives of the scientists, dismisses them, and accuses them of villainy. She has the answers and the answers all point to vaccines. However, she offers no evidence for this belief in the piece, though.

I grant you, she's writing to an audience who already buys this party line, so it's not like it's going to be a hard sell. Nor is it like AoA is going to allow any countering of this essay on. They have their version of reality and they really don't like to see anyone argue they are wrong.

And some nitpicking: "When she is not teaching, she is researching the biomedical implications of autism, both past and present."

Umm, no, unless she's actually conducting research, what she is doing is a literature review. She's reading. Researchers research. To say she's researching gives her a patina of the establishment she's railing against. And it's inaccurate and falsely elevating.

Conrick is a (special ed?) teacher, by admission, and once wrote to me on AoA: "I am so sorry for your students as they are receiving a double dip of crap as you mix SB-C "theories" and your own personal opinion. These are not facts. Please add real research onto your list for students..." and this gem, "Though most of the archaic psychology stuff you seem to post guarantees you a job in the psych dept- it has zero accountability in the definition and treatment of children with autism." She didn't like my paper on theory of mind and threw a bunch of thimerosal "studies" at me.

SB-C refers to Simon Baron-Cohen, a leading researcher into autism and Aspergers. Note the deep irony in her first comment, because in her opinion autism is not a genetic neurological condition, but instead is mercury poisoning manifesting as "gut problems" among other symptoms, my "opinions" and Baron-Cohen's decades of work are crap.

My opinions, by the way, were my introduction to the paper:

Some of the most beautiful people I have ever seen have been individuals with autism. They often have this otherworldly look about them, as if they are not of this earth and are often deep in thought of other places and other times. It is only with tremendous effort and great cost that they turn their gaze outward and on others. It would be easy to dismiss this lack of awareness of others as extreme narcissism, but it would be a colossal mistake. Individuals with autism can be extremely empathetic when aware of another’s pain or discomfort; they will take on this pain as if it were their own. It is not a lack of concern for others’ well-being that characterizes autism, but instead is a relative inability to realize that other people can and are thinking, believing, and feeling different things from oneself. Even when that awareness can be taught, there remains a disconnect between that knowledge and the application of it to predict another’s behavior.


This earned her contempt. It's what she quoted when she went on the attack at AoA. Just this bit of my paper. The fact that I dared to teach psychology students psychology and neuropsychology regarding autism. For gods' sake, let's hope she didn't read the paper on the culture of autism.

Having read many of Conrick's comments both at AoA and Huff, as well as a piece she has on Kim S's personal blog, I have to conclude the derision and scorn she heaps on anyone who disagrees with her way of seeing autism is born out of pain. Since her daughter is an adolescent now and this pain, anger, rage, hell, let's call it what it really is, vitriol seeps through her posts, it makes you wonder many things, especially regarding how and what she teaches her students, how she sees her students with autism. How she treats them. How she treats parents who disagree with her beliefs regarding autism. How she sees her daughter.

One thing I can rest well with tonight is that I look at each of my children and see children. Not vaccine damaged goods, not tragedies that I am forced to endure, not as the shell of my real children who were stolen away from me. But as the beautiful children who are who they are because of the incredible dance of genetics and environment, the wonderful comingling of my husband and my DNA. There is no rage, no pain, no regret, no sense of loss when I look at my children. One of them, my boy, the boy, will most likely be with me always, will never grow up to get a job, an apartment, an independent life of his own. If he wanted these things, it would undoubtedly hurt that he won't have them, but he is blissfully unaware of it all. He is happy with his life and his dreams, dreams that always remain tantalizingly ahead of him. Yes, there are pockets of time where there is poignancy, a ping on the heartstrings when milestones pass by. Yes, there are frustrations that come with raising and loving children and adults with autism. But, there is no sense that who he really is was taken from him. He is the boy. And my daughters are vibrant, fascinating little geeks with significant issues who amaze and astound me more than they ever frustrate me.

Not being eaten by anger, pain, rage and a sense that the world has conspired against me to rob me of my life that I should have had if only my children hadn't been autistic leaves me the time to do many other more joyful things, and time to counter these sorts of essays and articles that distort the reality of what research says about autism.



And then there are the commenters, who deserve a post of their own (seriously, take the time to wade through some of them). Here is just one:

"Its clear that AoA is part of the solution and the rest, disappointingly and self-evident, are part of the problem."


http://www.ageofautism.com/2009/06/-autism-and-gene-research-who-benefits.html

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