Cause and Cure: On the disconnect of science and junk science about autism
The past few days have seen some discussion of two topics—-cause and cure—that I have previously referred to as fighting words in discussions about autism. Yesterday’s post on The truth about autism: It’s not toxic led to a discussion about “cause” (which has been discussed here more than a few times; see, for instance, The Cause of the Autism Mother). A post on Amanda Baggs on CNN tonight set several rounds of discussion about “cure” into motion.
To clarify: My own position is that, rather than devoting untold efforts to unearthing some cause of autism, I prefer to focus my energy on what I can do for autistic persons; for my son Charlie here, today, and now. In my son’s case—he is 9 3/4 years old—-this means his education: Charlie has learned to read about 20-something sight words. He has never been one for books, or so I thought: When I recently found out that he asks for books at school and pages through them inbetween working on his academic programs, I really cannot say how thrilled I felt: What is better than reading a book…...
And that kind of feeling at seeing Charlie learning and growing far eclipses any wish or desire in me that he be “cured” from autism. I see no need to “recover” Charlie from autism. I did have to recover myself from the notion of “recovering” Charlie—had to understand why there was never a need to “recover” him from autism, from who he is. There is always a need to educate and teach Charlie—just as there is a need to educate and teach any students, including those college students in my ancient Greek and Latin classes. But the purpose of my teaching, whether of Charlie or of my students, is not to turn them into something I have pre-envisioned, but to help them uncover some capacity inside of them that they may not even be aware of; to bring their own native ability to light and show them that they can do what they had not thought they could.
Before I starting writing here on Autism Vox, I was glad to be an “autism mother” but hesitant to state my position on “autism issues,” such as vaccines, biomedical treatments, neurodiversity, and so forth. Being a literary critic and a language teacher, I had more than a few doubts at my ability to understand, much less write about, genetics, mirror neurons, and other scientific topics.
Scientists like Raymond Tallis, professor of geriatric medicine at the University of Manchester remind me of the importance of understanding about science and scientific research in autism, especially so that one can be wary of “junk science.” As he writes on February 28th:
A recent MORI poll found that less than half of people surveyed disagreed with the statement that “the risks of science outweigh the benefits”. This is rather as if less than half of bodies believed that, on balance, the circulation of blood was a good thing. But this dismal statistic is perhaps not as surprising as it should be; for it is increasingly fashionable to assert that science is in trouble and that its troubles spell trouble for the human race. Scientific expertise and science itself are regarded with suspicion, while nonsense about science and nonsense passing itself off as science are given an easy ride.
An instructive instance was the panic over the supposed connection between the MMR vaccine and autism. Careful studies of millions of children who had been immunised, which showed no causal link, were regarded as somehow tainted, while the views of junk scientists, and of celebrities whose ignorance was matched only by their reckless irresponsibility, were accepted quite uncritically. In the end, science won out but it was a close-run thing and the argument was unconscionably protracted. Even now the Daily Mail is not convinced.
Hostility to science is largely pretence, of course. ………..
And yet this hostility should not be dismissed. Underplaying the benefits of science and emphasising the things that go wrong feeds into a general pessimism about the future, and about human possibility, that could be self-fulfilling. Junk science, which parasitises the language of science — think of “reflexology”, alternative “immune therapies” — thrives on denigration of the real thing and is looming ever larger in the collective consciousness.
“Junk science” masquerading as the real thing is, for some reason, frequetly to be found in information (online and off) about autism. But while it sounds like science—”reflexology,” “immune therapies”—it is not, Prof. Tallis writes.
Not that science does itself any favors. Science, with its demands for rigor, honesty, and careful documentation of all procedure and outcomes, is perhaps its own worst enemy:
Other things ease the path of the antiscientist. The honesty of science is a built-in PR disaster. Unlike junk science, it reports its failures, its uncertainties and its changes of mind; and the rewards of fraud in science are short-lived. Self-criticism, perpetual questioning of authorised opinion and received ideas, goes all the way through science like “Brighton Rock” through Brighton rock. Worse, much science is difficult to understand and many educators regard the expectation of intellectual effort in pupils as harassment.
In light of that last sentence—-”Worse, much science is difficult to understand and many educators regard the expectation of intellectual effort in pupils as harassment”—recall the results from the Stanford study about what scientists are actually researching (41% on the brain and behavior) and what the media reports (48% on environmental causes of autism). Prof. Tallis urges us to overcome this disconect by continuing the hard work of challenging received ideas and too-evidence correlations; by looking “upstream” and being “tough on unreason and on the causes of unreason,” whether this involves theories about vaccines or TV, etc., causing autism.
If we can only be somewhat as “tough” on the “causes of unreason” about science and autism—-as on the TV causes autism theory—I think the conversation might be able to drop some fighting words from its vocabulary, and be an exchange of ideas and beliefs across the disconnect—-beyond debates about cause and cure—-and about the child, the person, before us.
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POSTED IN: Junk Science, Science, Vaccines
7 opinions for Cause and Cure: On the disconnect of science and junk science about autism
MARIA LUJAN
Feb 28, 2007 at 6:26 am
Hi Kristina
Please remember that many times new ideas that need confirmation at the molecular levels has been labeled “junk science” many times.
I agree that the CAUSE(s) /CURE(s) discussion such it has been proposed and carried out has been a distraction many times of the core of the efforts,that should be autistic human beings. BUT the anti CAUSE(s)/CURE(s) position somehow , even if it was not the intention, has also shifted the attention from the autistic human beings, even if the dignity and the deffense of their human rights have been the goal. These are not bad words per se; all the problem is about how the discussion and the conclussion of the scientific published studies, the policies and the phylosophies are conducted.
When you read many of the scientific studies, the language is controversial per se: such thing IS NOT FOR SURE a cause; such thing IS FOR SURE a cause. These/those interventions are in the goal of “cure” or “recovering”.
Everytime something is published, especially in the field of autism, surely it is going to be uncomplete, needed of further confirmation and perhaps partially wrong. Science evolves because of previous mistakes and the fair and objective and scientific analysis of these aspects to improve in “constructive criticisms” –even if something must be demonstrated to be wrong-and new ideas, many times related to the previous one – but not equal and based in new findings perhaps today unkown and many times completely new- can change totally after confirmation what we know TODAY.In my field, there are plenty of cases of these.
Lisa/Jedi
Feb 28, 2007 at 9:45 am
I think that one of the problems we are facing is the perception that science “should” be able to explain everything & that if it doesn’t, it has failed. Looking at the increase in scientific knowledge over the past decade or two, we’ve made amazing advances in health & welfare (which is, in itself, part of the problem since discussion of the ethical use of these advances has lagged behind their actual use). But scientists still don’t know “everything” & some of what is believed now to be true will be proven incorrect. As Dr. Tallis points out, this works against science, making it seem no better than quackery. It seems to me, though, that the intersection of desperation & speculation, combined with the vast amounts of information science has yet to yield, is what leads to these dangerous beliefs about “cures” & “treatments”. It seems very ironic & disturbing to me that parents are allowed to subject their children to dubious dangerous procedures which wouldn’t pass any research facility’s IACUC (committees which oversee animal research in the US), whose requirements for animal care are extremely stringent. Since when did fear take the place of good sense? Since when did hope become the only basis for causing a human being pain & perhaps death? (Rhetorical questions…)
The flip side to all this is the sometimes automatic disregard for ideas & treatments that come from non-western scientific tradition as not “scientific”. Acupuncture, for example, comes from a long tradition of Chinese therapeutic medicine & has finally been recognised as a valid form of treatment here in the US, particularly since it has been extensively studied by western science & shown to work. Other non-western therapies, such as Reiki, are still being investigated, but at the moment are looked upon as wooly-headed -mostly because they are non-invasive, I suspect… we do not have a tradition in the west of medically treating the body without actually poking or prodding it. The automatic dismisal by some of these non-invasive therapies as non-scientific smacks somewhat of racism (to my mind) & is particularly interesting since it is not seen as particularly odd or wooly in the west for prayer to affect someone’s physical state. There are even medical practitioners who use (Christian-based) prayer in their practise of medicine. I think, however, that western society’s budding acceptance of new, non-western therapies adds to some of the confusion as to what can & can’t be treated or “cured” since anything new can hold so much promise… And so we’re back to desperation again, & those unscrupulous enough to prey on the desperate.
Maybe, if we could just get everyone to consider that autism isn’t the most horrible thing that could happen, we could get beyond the desperation & fear, & get a better sense of what works therapeutically, & what doesn’t…
Kristina Chew, PhD
Feb 28, 2007 at 1:07 pm
Science evolves because of previous mistakes and the fair and objective and scientific analysis of these aspects to improve in “constructive criticisms”: Good words to go by. I think often about the Latin root of science, scientia, which simply means “knowledge,” and (in my thinking) this indeed evolves over time as we learn, err, and seek to learn more.
Moi ;)
Mar 1, 2007 at 11:10 am
I think people just don’t think about how much time it takes to really do something properly scientifically. People are too used to instant gratification….
On the educational hand, however, if someone had told me 10 years ago that Bug would be anywhere close to where he is now developmentally I would have told them they were nuts. I am also talking about a child who also hated books. Words freaked him out. He’s been as far behind as 3 years in reading comp, due to pragmatics and theory of mind issues (and a crappy school district), for the most part.
It has taken us four years, but I want you to know that on a test he took last week he was two months Above grade level in Comprehension!
You have to do what you have to do to meet the needs for Now to build his potential and his foundation for his future. And don’t let the cause/cure turkeys get you down… I don’t care what they think of me or what I think, period. If I did that, I’d be on Valium….
Autism Vox » Something To Make You Think
Mar 2, 2007 at 3:27 am
[…] As you may have noticed over the past few days, or weeks, or months, there have been a few other things to write about regarding autism: cause—-cure—-the autism “epidemic“—-vaccines—-why in the world there is so much autism in New Jersey—-little Katherine McCarron—-the genetics of autism—-disablity and mythology in the ancient world—-legislation for autism in New Jersey—-Sigourney Weaver as an autistic woman—-poetry—-the rhetoric of autism writing—-and a really good book. […]
Autism Vox » The Age of What Diagnosis Does Your Child Have
Mar 3, 2007 at 3:54 am
[…] More than a few who are parents of autistic children see environmental and other agents as the cause of the increase in autistic children; of the “autism epidemic.” It is not the bedeviling topic of autism causation that I wish to address in this post, but the related question of the increase in childhood psychiatric disorder as noted in a February 2007 study by Danish researchers. Even more than living in the Age of Autism, or the Age of ADHD, can it be said that we live in the Age of What Diagnosis Does Your Child Have? […]
Michael J. Dochniak
May 29, 2007 at 6:18 pm
Over the last 60+ years, science has failed to understand the etiology of autism. As the incidence of autism increases, parents of severely autisitic children need to express themselves and hopefully entice scientists to think differently.
Junk science is the stuff of creativity,
creativity is the foundation of hypotheses, and
a hypothesis is the food of science.
So, when we discourage “junk science” we may just be starving the thing that science needs the most.
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