Well Being

The truth about autism: Not toxic and not the enemy

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There has been an often lively back-and-forth on a February 26th post I wrote, The truth about autism: It's not toxic. This was the beginning of the post:

There is a lot of mythology, a lot of lies, out there about autism. According to Anne McElroy Dachel, an autism mother and a Generation Rescue “rescue angel,” the “really big lie about autism” is that better diagnosis is the reason for the rise in the prevalence rate of autism—1 in 150 among American children according to the latest figures from the CDC. I would rather say that, to claim that vaccines, and specifically the mercury-based preservative thimerasol cause autism, is misleading and potentially dangerous.

Even more misleading, though, is what Dachel suggests that autism is. In her February 25th op-ed, The Really Big Lie About Autism, Dachel characterizes autism is an “environmental neurological disorder” and singles out thimerasol as a culprit (not surprisingly, as Dachel is a member of A-CHAMP (Advocates for Children's Health Affected by Mercury Poisoning). While (as I note below) she cites various statistics indicating a rise in the prevalence rate of autism, she does not otherwise refer to what autism is in her op-ed on the “really big lie about autism” except that it is, indeed, some kind of poisoning of children today by environmental toxins.

Autism, according to these sorts of theories, is actually caused by some kind of external, poisoning agent—by something that truly exists and can be pointed to and can be chelated out of an autistic child to “detoxify” that child. Autism, that is, is itself “toxic” and can be equated with toxicity.

This “toxicity” of autism is not meant metaphorically; thus do parents have children tested for substances such as heavy metals and mercury, and then give them various drugs and supplements, or utilize such products as infrared saunas and magnetic clay, shots, infusions, and so forth. (For the record, while we have not tried any of these procedures with Charlie, I know about them first of all not from what I have read or heard, but from talking to friends who follow these procedures for their autistic children.)

A comment of Kassiane's stood out to me:

Big words I’m good at…metaphors, no…which is why being called toxic hurts. Because I’m not. I’ve seen the numbers. I have unusual brain structure & glucose usage. It’s not toxic, it’s DIFFERENT.

In a February 27th Washington Post article on labels and diagnoses, Kathleen Seidel, proprietor of Neurodiversity.com and mother of an autistic child, made a similar comment regarding attempts to link autism with mercury poisoning:

“'Some people say, ‘My child is a toxic waste dump.’ People don’t understand the stigma. I don’t want someone looking at my family member that way.”

Viewing autism as toxicity stems from a belief that autism is caused by some external agent. In contrast, to speak of autism as difference is to view autism as something intrinsic and integral to a person; as what and who a person is. When those who believe that autism is caused by such external factors as vaccines or thimerasol or environmental pollutants speak about the toxicity of autism, they mean this literally, not metaphorically. However, an investigation of their explanations of autism–of what it is, of how to treat it—reveals that metaphors of invasion and of warfare are entwined in their language. Further, the use of these militaristic metaphors and of a “war on autism” closely echo the metaphors used to describe two other diseases that have attracted much public notice in the late twentieth century, cancer and AIDS. The late Susan Sontag analyzed the metaphors we use to talk about these diseases in two essays, Illness as Metaphor and AIDS and Its Metaphors (1977, 1988). From the latter essay:

Where once the physician who waged bellum contra morbum, the war against disease, now it's the whole society. Indeed, the transformation of war-making into an occasion for mass ideological mobilization has made the notion of war useful as a metaphor for all sorts of ameliorative campaigns whose goals are cast as the defeat of an “enemy.” We have had wars against poverty, now replaced by the “war on drugs,” as well as wars against specific diseases, such as cancer…………. the wars against diseases are not just calls for more zeal, and more money to be spent on research. The metaphor implements the way particularly dreaded diseases are envisaged as an alien “other,” as enemies in modern war. (pp. 98-99)

Compare the metaphors of war in these references to autism and in “ameliorative campaigns” to treat autism: There is the Combating Autism Act (CAA). Congress Declares War on Autism was the heading of an ABC news story after the CAA was passed in early December 2006. Autism must be defeated; autism “is four times more likely to strike boys than girls.” Autistic children are in need of being rescued. Some researchers are trying to figure out what ” environmental triggers” might be having an “increasing impact” on autistic children; “triggers” suggests that some attack by some kind of weaponry is being launched against a child. Catherine Maurice in Let Me Hear Your Voice: A Family's Triumph Over Autism (1993) writes up her “battle plan” to begin her “assault on my daughter, an assault of love, with no holds barred” (p. 81). “If I had to batter her down, bend, break, and ravish her autistic self in order to get to that Anne-Marie spirit, I would so so,” Maurice writes, with reference to a sonnet by the poet John Donne, a “beloved” poem, his Holy Sonnet 14:

Batter my heart, three-person'd God ; for you
As yet but knock ; breathe, shine, and seek to mend ;
That I may rise, and stand, o'erthrow me, and bend
Your force, to break, blow, burn, and make me new.
I, like an usurp'd town, to another due,
Labour to admit you, but O, to no end.
Except you enthrall me, never shall be free,
Nor ever chaste, except you ravish me.

Maurice cites Donne's poem in the course of discussing Clara Claiborne Park's The Siege: The First Eight Years of an Autistic Child; Maurice contrasts her own view of a “siege” as “something more forceful and invasive than the kind of respectful, patient waiting portrayed” in a scene when Park's daughter is three years old (“I do not press…….I have learned to wait” (p. 50-51), writes Park). And the notion of a siege—again, a metaphor drawn the language of warfare—-is conveyed in the title of Bruno Bettelheim's The Empty Fortress: Infantile Autism and the Birth of the Self (1967). Writes Bettelheim on an autistic child withdrawing into her or himself:

……he withdraws to an inner redoubt in an effort to survive within a totally frustrating environment [of a rejecting mother]. But no inner fortress has ever allowed for survival without help from the outside. The concentration camp prisoner who did not get help from others, or could not use it, was doomed. This is why I have said that autism begins as a breakdown in communication. (p. 78)

According to the title of Bettelheim's book, the fortress, the “redoubt,” that the child has withdrawn her or himself into, is an “empty” one: Following his analogy, the child is seen as an empty shell, a blank-minded being, that “alien ‘other'” that Sontag refers, an enemy in a “modern war” that professionals and parents will campaign against to “defeat” and at least to “ameliorate.” (One autism organization indeed states that it is “aggressively” funding research to “accelerate the pace of discovery”; it is also said that the funding of autism research will “maximize return on investment”—funding the campaign against autism has the makings of a promising financial venture.)

We know so much more about autism than in the 1960s, than when Bettelheim's ideas were prevalent. But it seems that they ways that we talk about autism—the language that we use—-has not changed much.

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. And, as I wrote at the end of the post The truth about autism: It's not toxic, whatever our views of autism aetiology,

The truth about autism is something far simpler, I think.

The truth about autism is our children who have autism—autistic persons themselves—and the daily round of joys and struggles that they go through, and that parents of autistic children try very hard to understand.