They Have To Be A Little More Careful With These Titles
As has been noted, I write a lot of posts here—-and, as each post needs a title, sometimes I go for the straightforwardly descriptive; other times, inspiration strikes and something a bit snazzier (to my ear) results. One knows not to “judge a book by its cover” nor, in the same vein, a blog-post by its title, but the volume of information on the internet often means that a reader is more likely to follow the link to a website if the title sounds promising. (Unless, of course, you are the type of reader who is not swayed by clever wordplays and title making big claims.)
The titles of some recent articles about autism research are attention-grabbing, but somewhat misleading. Research May Unlock Mystery of Autism’s Origin in Brain trumpeted a Science Daily article (which I wrote about in the post, Connections and Frequencies: New Study on the Brain): The study in question actually only contained ten autistic participants and did not point to any really “new” findings about connectivity in the brains of autistic persons. An August 23rd Discovery Magazine article was entitled The Goldilocks Method for Curing Autism. The article described a study published in the July 3rd Proceedings of the National Academy of Sciences about a way to “reverse” symptoms of autism and of Fragile X in mice (described in my June 25th post on Symptoms of Fragile X Reversed in Mice). Scientists were able to achieve this result by inhibiting the brain enzyme, p21-activated kinase, or PAK.
But Goldilocks? Did something not seem “quite right”?
This is the connection of the study on inhibiting PAK in mice and the fairy tale character: The researchers worked with “two strains of mutant mice”:
The researchers wondered what would happen if the two strains of mice were bred. Would the two mutations counterbalance one another? To their great surprise, that is exactly what happened. The shape and number of dendritic spines turned out to be normal, as was the transmission of nerve signals. So was the animals’ behavior. “Just by making two bad mouse mutants together, you make almost like a normal mouse,” [Nobel Prize winner Susumu] Tonegawa says.
I think (I think) that Discovery Magazine may be seeking to suggest that you take one mutant mouse, you take another mutant mouse, and then (after breeding them), you get a mouse that is “almost like a normal mouse”—just as Goldilocks first tries Papa Bear’s porridge and thinks it too hot, and then Mama Bear’s and thinks it too cold, and then thinks that Baby Bear’s porridge (and chair, and bed) is “just right.” Something is “wrong” with the first mouse/bowl of porridge, and with the second mouse/bowl of porridge, and then the third is “just right.”
The interplay of genes and their interactions with each other intrigue me, but the Goldilocks analogy rather over-simplifies what is going on. And, as long as we are dealing in analogies, if the human equivalent of the Fragile X “mutant mice” is a person with Fragile X, I’m not so sure it is the best to think of a person as “mutant” or, too, as not “quite right.”
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POSTED IN: Fragile X, Genetics, Health, Metaphor, Neuroscience, Science
10 opinions for They Have To Be A Little More Careful With These Titles
Harold L Doherty
Aug 25, 2007 at 8:51 am
“The study in question actually only contained ten autistic participants and did not point to any really “new” findings about connectivity in the brains of autistic persons”
So did Science Daily get it wrong when it said:
that:
“U.S. scientists have found brain cell connections in autistic people might be deficient in single regions, not just between regions as has been believed.”
http://www.sciencedaily.com/upi/index.php?feed=Science&article=UPI-1-20070823-13391900-bc-us-autism.xml
RAJ
Aug 25, 2007 at 10:14 am
The Discovery article makes an assumption not shared by all researchers, that Fragile X is one of many genetic autism syndrome(s). Several groups have pointed out that the social impairments seen in Fragile X patients who have a second diagnosis of an ASD, are one of shyness and social anxiety, not the pervasive lack of response and indifference to other people which up until the mid 1980’s was perceived as the core defining feature of autism.
Sine the vast expansion of the concept of autism in the last several decades, and the ambiguous and subjective criteria for an ASD diagnosis, the rate of autism in the mentally retarded population has soared with even Down’s Syndrome being now labelled as an ‘autism syndrome’. Twenty five years ago it was unheard of for a Down’s Syndrome child to be diagnosed with autism, not it is commonplace, what has changed?
Estee
Aug 25, 2007 at 12:38 pm
Kristina,
I was going to write something really similar today, and still might, but you’ve said it so well.
A statistical norm is something that we’ve conjured based on an average. If we measure everything against that norm, we can come up with what many scientists coin “abnormality.” But is it, really? To use Laurent Mottron’s analogy, is the cat a deviant from a dog? Or is it simply an animal of a different species?
So too, are humans different? Are autistics “lacking brain connectivity” or do their brains function atypically? Also, therein lies the question on how the brain can use its other areas to do what was typically thought to be done in another area. There is also the issue of what an autistic can do/perceive that a non autistic person may not.
At least when we look at individuals as “whole” and not lacking, but rather handicapped in a society where the majority functions similarly, and they differently, we can foster more respect for the way that disabled individuals function, behave, live and contribute, in society. There is nothing “abnormal” about it if we view it in this regard, and we can certainly offer more appropriate support and respect for people who are….different.
Jennifer
Aug 25, 2007 at 2:42 pm
“Twenty five years ago it was unheard of for a Down’s Syndrome child to be diagnosed with autism, not it is commonplace, what has changed?”
I have a student of whom I often (hyperbolically, but not by much) state that if she does not indeed have both Down syndrome and autism, I will eat my shoe. But she is the first I’ve been that sure about, though I (belatedly) wonder about one of my brother’s friends in elementary school.
Our school psychologist and program specialist have talked a few times about how, if there is a child whose cognitive impairment is significant enough, it can present as autism — in stereotypical behaviors (stimming) especially.
I had one student who initially came to me with a diagnosis of autism, but after an extensive evaluation by an outside agency, that eligibility was changed to MR (our district still uses the term) for just those reasons.
I know that doesn’t account for all kids with a dual diagnosis; my gut instinct is that the majority of the rest of the dual diagnoses are related, however.
Kids with cognitive delay, Down syndrome especially (in my experience) often seem to seek things like: order, routine, predictability. My own brother has decided that Sunday is Subway day, and to him, missing his Sunday trip to Subway (even for a preferred activity like going to Disneyland) feels like the sky’s caving in.
They also often — nearly always, in my experience — seem to have sensory integration issues.
Also, despite the public’s perception of the happy-go-lucky person with Down syndrome who wants to hug everybody, kids with Down syndrome often struggle with social skills issues. I have a student with Down syndrome whose only method, when she came to me, of seeking interaction with anybody was to pull their hair or pinch them.
But again, you come to the question: are these features of Down syndrome, or are they truly features that suggest a dual diagnosis?
And if they are features that suggest a dual diagnosis, are they truly new, or were they discounted in the past as features of Down syndrome?
For the record, I don’t think there’s an easy, or a simple, answer to either question.
(Sorry for the long post, but I hope it was helpful.)
Regan
Aug 25, 2007 at 5:32 pm
“Just by making two bad mouse mutants together, you make almost like a normal mouse,” [Nobel Prize winner Susumu] Tonegawa says.
English is not Dr. Tonegawa’s first language. Would the substitution of mutation rather than mutant help?
I have seen so many of these news items now that as exciting as the potential or interesting as they might be, I’m beginning to feel that there are a few too many announcements drumming up a little too much promise. I certainly wouldn’t mind knowing in the headline that it’s a mouse model being talked about or that the results are VERRRRY preliminary or limited by sample size or other.
amy
Aug 25, 2007 at 8:39 pm
I would suggest taking a practical view of science journalism and focusing not on the journalists but on the professionals who actually take things like _Science Daily_ seriously (not scientists, in other words, but people who have the ability to do some damage: teachers, psychologists, others likely to be credulous about bad science writing).
Science journalists at that level are paid almost nothing to write under insane deadlines, whether or not they’re qualified to cover whatever they’re covering. They’re also selling to a general audience that responds to sexy titles regardless of accuracy. Many of the writers have no formal science education. The editors know they’re getting lots and lots wrong every day, and will tell you they do the best they can. If you want to influence them, I’m guessing you’ll need a recognizable organization and need to hammer on a maximum of two points at a time (”say X instead of Y”).
I would also suggest remembering that American scientists don’t generally keep up with political/social-science language-use debates, let alone scientists from abroad, let alone small eddies and currents of specific activism-related language debates like autism framing. But you really have to think about whose language you’re worrying about. Is Tonegawa going to be speaking publicly to the literati much? Going to be writing books for psychologists? OK, lean on him. If not, well, I’d say you may as well let the scientists concentrate on the science, and direct the rhetoricial push at funding bodies — Congress, for instance. Scientists tend to be exquisitely sensitive to language that will cost them grants.
Now that I’m thinking about it, my guess is that this “pop vox of autism” movement will get exactly nowhere unless some splinter of it captures some large and authoritative autism voice, at which point it will no longer have the power to broadcast to the genuine pop vox of autism. You cannot put an entire language on a bumper sticker or even into a white paper. And I’m really unconvinced that some mass of autistic people will get the job done, because of the kind of focus and lobbying it requires. Showing up and existing, yes, I believe that can be done. Using that power effectively, I’m dubious.
Books have a chance, because they still underpin debate in halls of power, including academies and training grounds for psych types. But as you well know, Kristina, “mother of” is not viewed as qualification for book-writing, even with the PhD. So I think if you want to influence the debate at an NIH/funding level that could trickle down, then — unless you really are placed to write this kind of book yourself — you’ll need to pitch your blog (or help pitch other sites) so that academics who do work this field will find it tasty and will draw the kinds of points you like.
Pisser, ain’t it? I suspect it’s easier just to keep your head down. Maybe not for everyone, though.
Kristina Chew, PhD
Aug 25, 2007 at 10:12 pm
amy, thanks for pointing all this out. The representation of autism, and of autistic persons, is a constant interest of mine; as a literary critic, small nuances of words and phrases stand out to me, as I think these point to what is popularly thought about autism.
As for a book……I am trying.
George Wade
Aug 26, 2007 at 1:55 pm
If you can find ZenWorks Productions, you will find many new conference presentations, in DVD or downloadable form, that show new models of autism.
They are now models of biological disruption that can be measured and repaired: when caught early enough.
Many of you will not like these new models. However, you may at least be able to see some possibilities of prevention, which will be almost the same as many models of repair of metabolic dysfuntion.
It may not be all bad ?
Bink
Aug 26, 2007 at 4:57 pm
I appreciate Amy’s thoughtful post. I suspect George Wade is a sock puppet.
George Wade
Aug 27, 2007 at 12:21 am
Bink,
I appreciate your thoughtful post, too.
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