Words Matter: The gene, the DSM, and Charlie’s speech
When you are the parent of an autistic child, every single word your child says matters: My son did not develop speech when he was a toddler and each syllable, each vowel and consonant combination, has come thanks to his own hard work and lots of therapy, speech and otherwise. When Charlie talks, I listen.
Since I was a child, I have been intrigued by literature and languages, but teaching Charlie to talk—to “have” language—-has made me even more aware of the power of words, of the difference on word can make. I therefore often look closely at the words used to describe and represent autistic persons and autism—-as the description of “the darkness of Autism” yesterday on Larry King Live. Can the ways that we talk about autism—-the words and metaphors we choose and that we use to describe autistic persons—indeed affect what we perceive autism and autistic persons to be?
To put the question in a slightly different formulation: While some believe that there is currently an epidemic of autism occurring in this generation of children, it can also be argued that, far from being a real increase, the rising prevalence in the incidence of autism is due to our being better able to diagnose autism because we understand it better and because we can, too, better describe and say what it is. The rise in the incidence of autism has occurred because—like the DSM criteria—the meaning of “autism” has evolved, to become “autism spectrum disorder” and to include Asperger’s syndrome, due to the confluence of several forces, cultural as well as scientific.
By way of comparison, we might consider how the word “gene” has evolved, as detailed by Paul Griffiths, philosopher of science, ARC Federation Fellow at the University of Queensland, and professor of the history of science and philosophy at the University of Pittsburgh.
The meaning of “gene” is as shifting and elusive as anything dreamed of in literary theory. The gene has come a long way in recent years. “Genomes,” British agricultural geneticist Steve Hughes likes to say, “are places where genes happen.”
Scientific concepts are research tools, as much as glassware and chemicals, and like any other tool they change as the work changes.
In The genome’s quirky genius in the March 21st The Australian, Griffiths describes the evolution of the term “gene” from its introduction in 1909 “to describe the results of experiments in which organisms with different traits, such as rats with differently coloured fur, were bred with one another. The gene was a hypothetical something whose inheritance could explain why these traits appeared in the offspring in the ratios first described by Gregor Mendel decades earlier.” As the work of geneticists has changed—-molecular biologists have conceived of the gene as a “special kind of DNA sequence” since the 1960s—so have their tools. The Mendelian gene is now a molecular gene; just as “old laboratory tools survive” alongside the latest technological devices, so do old concepts and old ways of speaking about the concepts persist. Notes Griffiths,
……the availability of whole genome sequences and of computational tools to investigate these vast assemblies of data - collectively known as “postgenomic biology” - is undermining this representation of the gene. The way in which the DNA contains an image of its product is often akin to the way in which cubist paintings contain a fragmented and distorted image of their subjects. And the genome has an additional trick: a single brushstroke may be part of many paintings.
We cannot simply speak of individual genes in the way that people talk about some “autism gene” being found one day. Biologists, Griffiths writes, “abandoned the idea that each gene has a single product more than 20 years ago,” and he describes the “complexity, and apparent perversity, of the way in which gene products are made” with a reference to literary theory. Specifically, he refers to the work of French literary theorist and philosopher Jacques Derrida and his notion of the “epistemic object” which are “are not things scientists discover, but names that play a practical role in scientific inquiry.” The gene can be considered such as epistemic object and so, perhaps, so can the criteria that are used to diagnose autism. The DSM criteria , that is, provide us with a framework—with scaffolding—through which we try to see what autism is, who an autistic person is.
But those criteria are “shifting and elusive,” as Griffiths describes the gene. The DSM criteria seem to be so official and definitive, even though they themselves are understand revision, and the DSM-IV criteria that are currently used to diagnose autism are the result of debate and discussion among psyciatrists themselves (see chapter 5, “The Rise of Diagnosis,” in Unstrange Minds: Remapping the World of Autism by anthropologist Roy Richard Grinker). As we keep figuring out more of what we are trying to see by and through the scaffolding, perhaps we will find that we need it less and less—or that perhaps we are in need of something completely different.
In the meantime, as we seek to find the right definitions to describe autism, the words and language that we use to represent autistic persons will continue to matter and—like Charlie’s words (which right now are “Mom, finish typing!”)—must always be seriously considered.
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POSTED IN: Art, Diagnosis, Epidemic, Genetics, Language, Metaphor, Philosophy, Psychiatry, Science
17 opinions for Words Matter: The gene, the DSM, and Charlie’s speech
Rochelle
Mar 22, 2007 at 11:28 pm
Interesting thread, Kristina. Going back to your first paragraph regarding your education and Charlie’s needs, I found it a little ironic that I’m a student of Rhetoric, disability rhetoric at that, and my son’s autism precludes him from being able to read social situations. Rhetoric–the study of purpose, audience, and occasion. And, that’s the one thing my son struggles with the most.
I just have to rationalize that there’s just nobody better suited for my son’s needs than I am. If anyone can teach Tobey about reading social situations, it’s me. And, if there’s anyone who’s going to appreciate Charlie’s language, it’s a scholar of language.
I would venture that we all have special abilities or talents that enable us to “fit” well with our children’s needs.
I hope you have a nice first day of Spring tomorrow…
Zaecus
Mar 23, 2007 at 4:23 am
“…each syllable, each vowel and consonant combination, has come thanks to his own hard work and lots of therapy, speech and otherwise.”
Can you be certain that the therapy was a necessary part of him learning to speak?
Kristina Chew, PhD
Mar 23, 2007 at 9:04 am
Good question. One can’t ever be 100% certain but without therapy he makes plenty of sounds but actual words can’t be heard, only streams of sound.
Julie
Mar 23, 2007 at 9:22 am
I absolutly agree that our gifts and talents fit to best serve the children we have. I worked with special education students for over 10 years before I was married and started my family. In many different capacities I worked at day camps, in the schools, job placement and as an in home trainer helping families deal with some of the most challenging behaviors. I do feel that this background makes me the best Mother for Rebekah and my two other children, but I have also been told many times better you than me because I would not know what to do. I wonder how they would feel if someone said that about their child.
Rochelle
Mar 23, 2007 at 11:32 am
Julie–I’ve heard that exact same thing, too. And, it makes me cringe a little bit, too.
When a friend told me that recently (in regard to our latest potty training issues), I realize that it probably is better me than her. I’m privileged with the honor and, at this point, have more resources to address the issue (patience, really at this point). We’re the lucky ones.
But, you’re right, Julie, it is a backhanded compliment. Funny thing is, I think that same thing about some of my friends NT kids. I’d much rather deal with Tobey’s autism quirks than my friend’s 11 year-old “drama queen.”
Julie
Mar 23, 2007 at 11:38 am
Which is why I believe we all have perfect children (for us). We are given these lives for a short time to nurture based on our needs and strengths. I feel a lot of the time I learn as much from parenting as I teach.
Kristina Chew, PhD
Mar 23, 2007 at 1:43 pm
Rochelle, I’ve more to respond but wanted to say the first thing I thought of when Charlie was being diagnosed was Saussure and linguistics……..I thought a lot about the arbitrary nature of the relationship between the sign and signified when we were teaching Charlie how to use sign language and say his first sounds.
Rochelle
Mar 23, 2007 at 4:37 pm
Kristina, how funny because I posted on my blog in November about semiotics and autism to illustrate the distinctions between high and low function and the arbitrariness of the signifier/d.
I wrote that we (in the collective sense) tend to privilege one sign system over another. Verbal over visual. Verbalization indicates “high” or meaningful functioning whereas pointing to pictures is considered “low” or meaningless functioning.
I used the term “meaningless” intentionally because signs take the form of words and images that we invest with meaning. The pictures that autistic children use to communicate are meaningful; however, they are not considered meaningless to a community that values verbal and written discourses. The difference here is, in many ways, a difference of signifier and signified. We could look, similarly, at acts like head-banging, flapping, and spinning as moments of signification.
But, I would love to read your thoughts on it…
Rochelle
Mar 23, 2007 at 4:39 pm
Julie–I think you’re right and it’s a shame that the parents who harm their autistic children don’t see this sooner or at all.
Kristina Chew, PhD
Mar 23, 2007 at 5:24 pm
I originally thought I was a very inadequate parent for Charlie based on my decidedly non-practical education—
Rochelle, I really like how you bring “meaningless” into discussing “hfa” and “lfa” and the verbal and the visual. One thing I have slowly learned is the extent to which Charlie’s apparently, mostly “meaningless” communications—-his humming, “babble,” behaviors like pacing, the head-banging—–are as invested with meaning as any words. I often feel like I am “reading” Charlie, not just in regard to “deciphering” his words or sounds, but in trying to see what he is communicating in so many other ways—ways that we’ve learned to ignore and think “meaningless.”
It was when we were teaching Charlie some very simple sign language signs that I started to think about the “arbitrariness” of it all—-why this movement over another one? And it might well be different in another culture…..
AJ
Mar 23, 2007 at 11:35 pm
Kristina,
You are the only one that I notice–through other forums and blogs I read–who mentioned the phrase “the darkness of autism” as spoken on Larry King. And I only had to read so far on this post before I had to respond (I will, however, read through because I value YOUR words). While I appreciated the awareness aspect of this episode, I realized that I wasn’t hearing anything I hadn’t already known, but it might be teaching someone else about autism. But I can’t help but be offended by the phrase “the darkness of autism”….as if these are the only behaviors and stereotypes (as seen in “Autism Every Day”) to expect. I suppose there are moments in the lives of parents of autism that could be considered “dark”….in our case, it’s Ely’s SIBs, though those are much fewer and far between now…but there is so much light.
I agree that any words we hear from Ely (recognizable or not, or, more succinctly, recognizable to us, her family) are special and thrilling. And, true…more often than not, they are scripted, echolalic….I was called “a silly goose” tonight, thanks to Elmo/Ely. And, as I’ve mentioned to you before, to hear Ely hum “The New World Symphony” and follow it up with “Music Byyyy….Antonin Dvorzak” or “Ode to Joy….Music By Ludwig Von Beethoven”, I know it comes from “Little Einsteins”, but it thrills me nonetheless. (By the way, she’s being evaluated by a music therapist, and indications are she could have perfect, if not absolute, pitch.) So her words don’t come out perfectly. They don’t even come out well. It still sounds like her heart can sing.
If that’s not light, I don’t know what is. And (to paraphrase a popular — in my day — group) it’s so bright, I need sunglasses!
AJ
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Phil Schwarz
Mar 25, 2007 at 1:56 am
A propos perfect pitch: Jeremy has informed me that our dishwasher operates in B-flat :-).
This actually makes a lot of sense: here in North America, appliances powered by alternating-current motors and transformers all operate at a frequency of 60 Hz. The B-flat 2 octaves below Middle C on the piano is (depending upon tuning) very close to 60 Hz in frequency.
(I suppose that European dishwashers, which operate at 50 Hz, sing in G…)
And — as I pointed out to Jeremy — we have an autistic person to thank for all this AC harmony (pun intended): Nikola Tesla, the pioneer of electrical power generation and distribution and inventor of the alternating current motor.
Kristina Chew, PhD
Mar 25, 2007 at 2:01 am
AJ, that was gorgeous—
So her words don’t come out perfectly. They don’t even come out well. It still sounds like her heart can sing.
These words of yours are invaluable—they describe what I would say about Charlie’s speech perfectly. He has been humming Beatles’ songs—he never watched the Little Einstein videos or I’m sure he’d be humming Mozart.
I know what you mean about the SIBs. Every day that goes by without one results in a sigh of “made it!” to me. And more and more it is indeed Charlie’s voice and being that speak to us—every sound is like the sun rising, yes?
Kristina Chew, PhD
Mar 25, 2007 at 2:06 am
I’ve never been able to test Charlie but I think he must have perfect pitch and I am quite sure he listens to the symphony of machine-sounds all around us. What are the sounds a train makes……
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