Autism Vox

The Enduring Heart of the Autism Mother and Other Metaphors

by Kristina Chew, PhD on May 13th, 2007

A metaphor is defined as “a figure of speech in which an expression is used to refer to something that it does not literally denote in order to suggest a similarity.” We say, for instance, that a table has a “leg” because the table’s leg helps it to stand and stay upright as a leg does for us humans. A new book refers to special needs kids—who are “not quite normal”—as the “elephant in the playroom” (the book’s title is The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs). (To be honest, the animal that I tend to compare my son Charlie to is an ox—-he was born in the Year of the Ox according to the Chinese zodiac and he is also a Taurus—well, a small ox, and a very faithful and affectionate one.)

Metaphors are frequently used to describe autism and, therefore, autistic persons. I am a literary critic by training and, therefore, pay a lot of attention to the language that people use (consciously, unconsciously); as I am also a classicist—who studies and teaches Latin and ancient Greek—I tend also to look carefully at the roots of words. For instance, the word “metaphor” is from two Greek words, the preposition and prefix meta, which means (among other things) “into the middle of, among,” and the verb pherein, which means “to carry.” A metaphor then involves a “carrying into the midst of,” a transport or transference of something to some other place—-even as, when one refers to one’s child as an “elephant” or a “little ox,” one is transferring a new meaning onto one’s child.

Autism is often described in metaphorical terms. I wish to note a few that have been used in recent writings about autism in the mass media. The “truth about autism” is that we are “throwing children into oncoming traffic,” as Kenneth Stoller, MD, FAAP, with Anne McElroy Dachel, writes in a recent essay that argues that the Centers for Disease Control and Prevention (CDC) has had more than a little to do with the current “epidemic of autism” due to its promotion of vaccines:

Common sense would tell us that pushing children onto a busy street, observing that some of them were injured, and then looking for a genetic reason why some of them were hit defies credulity.

No other disease in history has been subjected to the spin that has been put on autism.

To follow through on Stoller’s and Dachel’s metaphor: Giving children (mandatory) vaccines is analogous to “pushing” them onto a “busy street,” with the vaccines compared to a car that is about to crash into our children and cause them grievous injury (i.e., autism). This metaphor of vaccines as cars about to commit an accident, and of autistic children as the victims of a car accident, is further underscored by the use of the word “hit.” In a second essay, Stoller and Dachel compare whatever it is that causes autism (such as a vaccine) to a “mushroom cloud.” This metaphorical reference to nuclear warfare and its disastrous fallout has resonances with theories of autism aetiology that suggest that autism is caused by environmental toxins and/or pollution, in addition to mercury from a variety of sources: vaccines (via the mercury-based preservative thimerasol), the environment again, dental amalgams, and others.

Referring to whatever causes autism—and, in particular whatever has caused the rise in the prevalence in autism, to 1 in 150 children in the US (and 1 in 94 children in New Jersey, where I live)—as a mushroom cloud evokes a whole retinue of images of disaster and catastrophe. Another such reference is apparent in an April 26th article by journalist Dan Olmsted, The Age of Autism: Ground Zero, in which the writer suggests that he has found a specific geographical place, “the Maryland suburbs where cutting-edge government research in the 1930s and 1940s exposed families to the chemical that first triggered the baffling disorder.” (My husband Jim, Charlie, and I regularly pass by the WTC site—Ground Zero—in our peregrinations around Manhattan, and the associations of the phrase “Ground Zero” ring deep in us.) Olmsted also uses another metaphor, that of the “big bang” to describe how autism began, with a sort of cosmic explosion forever changing, and shaping, a universe. (I indeed find the very title of Olmsted’s series, “The Age of Autism,” as containing a reference to the phrase “the Age of Aquarius”; Olmsted’s phrase rather suggests that our times are not as filled with tie-dye, free love, peace, and Bob Dylan as that other age was.)

It is the case that autism is more often associated with not peace, but war; with not a search for compromise (though I suspect this is what the stuff of most of our lives is made of), but for the good fight. There is a tendency to use metaphors of fighting and war—-military metaphors—-in referring to autism, as I noted in The truth about autism: Not toxic and not the enemy:

People and parents in particular draw on these metaphors of warfare against the external enemy of autism because that is what they feel is going on in their day to day life with an autistic child. Nonetheless, such metaphors can have harmful effects in and of themselves: “Military metaphors contribute to the stigmatizing of certain illnesses and, by extension, of those who are ill” (p. 99), Sontag writes. Describing autism as something to be combatted, fought against, waged war upon, done battle to; as some external, poisonous, unknown thing that has invaded not only one’s household but the body of one’s child turns life with autism into war, combat and a battlefield and the child with autism into the carrier of all that is to be fought against.

One of the side-effects of using this kind of military language is that it can seem that one is fighting against—waging war against—autistic persons, among whom are autistic children, autistic adults.

I suppose it might seem a bit ill-timed to be writing about language that is militaristic, aggressive, combative on (of all days) Mother’s Day. Isn’t this the day when we are supposed to serve up breakfast in bed for dear sweet Mom—pancakes and cocoa and strawberries—or take her out to brunch, or send bouquets, buy Hallmark cards (or at least send electronic ones) and generally celebrate all the apple-pie-goodness of Mom?

Well of course (and I assure you, while I am not having breakfast in bed or brunch; Charlie has his usual 11.30am piano lesson, my guys have me taken care of very well).

Becoming an “autism mother”—-rising to the work of not only taking care of and teaching one’s disabled child, but also advocating for her and him—is a transformative experience. Call me a peacenik, but in advocating for Charlie I seek not so much to mow down obstables and ignorance in his path, but to do the harder work of meeting supposed opponents in the eye, extending a hand and maybe even sharing a cup of coffee—even as (to use what might seem a rather grand example) King Priam of Troy, father of Hector, visits the Greek hero Achilles and begs for the return of the body of his son, killed by Achilles. One classicist refers to this scene as the “enduring heart” of the mythic heroes in Homer’s Iliad (the scene occurs in Book 24) and yes, it is such an “enduring heart” that I strive to hang onto as I live the days, the hours and the minutes, with Charlie. Tletos—”suffering, enduring, patient, steadfast”—is the adjective Homer uses, and thumos—”soul, spirit, the principle of life, feeling and thought; mind, temper; heart, seat of thought”—is his word for “heart.” Thumos might also be translated as “gut” in the sense that one feels something in one’s gut—that apocryphal “I know something is not right with her or him”; that such and such a therapy, despite what everyone says, just is not the right thing for one’s own child. That such a thing (as a vaccine) did not “cause” one’s child to become autistic. That not one such anything “caused” or “causes” autism, but it sure is a good thing to be part of the population who can be fêted on Mother’s Day.

Charlie is a long, lean, lanky young man now. I walked behind him as he held hands with Jim while we made our way around Central Park this afternoon. Jim was carrying a faded chartreuse backpack that was Charlie’s years ago. Charlie is the spitting image of his dad in terms of his body type—a half-Chinese version of his Irish-American dad.

Someone who knows how to make a good metaphor has an “eye for resemblances,” to homoion theorein, according to the ancient Greek philosopher Aristotle in his Poetics (1459a). To homoion means “resemblance” and theorein means “to see” (as in the word “the-eater”—a place where one goes to see, to be a spectator). With a nod to Homer, I will suggest “the enduring heart” as a metaphor for an autism mother; as a metaphor of what it is to mother a disabled child. We do not live the easiest of lives, nor do our children but we get up each morning anew, and—-with our children, thanks to our children—we endure.

And the resemblance of us and even more of our children to heroes, mythical and very real, is right there for all to see.

Happy Mother’s Day to my sister, friends, mothers of autistic children any and everywhere!

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