Well Being

Autism Mythology

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In recent posts I have referred to the notion of an “urban myth” more than a few times, thanks to its use in a February 6th op-ed, Fact: No link of vaccine, autism, by Arthur Caplan, Emanuel and Robert Hart Professor of Bioethics at the University of Pennsylvania. On February 6th, I wrote about the vaccine-autism urban myth and, on February 9th, about three more “urban myths”: the decline of Roman civilization due to lead poisoning, the autism epidemic and New Jersey is toxic.

A commenter has added another, autism-related, urban myth of her or his own devising. On February 9th, GTP commented on the post The Vaccine-Autism Urban Myth:

True. The Romans were aware that lead caused serious health issues, even death. They (like society today) chose to ignore it or ignore the hazards it posed.

Complex interplay of forces? Sure- The Roman empire failed for many reasons such as over-expansion. But, impaired thinking skills also contributed to the decline. It’s well documented about craziness among the Roman elite. Does anyone remember reading about Caligula?

Lead contributes to impaired critical thinking skills as does mercury. Unfortunately our youngest are still paying the price today.

I wonder in the future if someone will say Autism is an urban myth and theorize that bad mothering is the reason.

In response, I noted that “GTP” had indeed mentioned an actual urban myth, namely the notion of “refrigerator mothers”—the theory that poor parenting skills (especially on the part of emotionally “frigid” mothers) is the cause of autism. Self-proclaimed child development expert Bruno Bettelheim was the main proponent of this theory according to which “autism is caused not just by bad parenting but by parents who wish their child did not exist” (see the Unstrange website page on Bettelheim). Echoes of this theory still exist (see Handle with Care: Romanian Orphanages, Extreme Situations, and Autism) and another commenter has commented on what happened in his own family because of the refrigerator mother theory. From what Derrick Jeffries wrote on February 2nd:

I am also a parent of a child with Autism, and the brother of a sister with Autism. I have Asperger’s Syndrome myself. I have many personal perspectives about Autism. Been living with it since 1961. My mother was one of the original “refrigerator mothers.” Do you think you have it bad today? Have you ever had a nurse come out to your house to observe you, and to see if you LOVED your child?

I know a little bit about parents grief also. I experienced it as a baby, while my mother left me laying in the crib for hours as she cried her eyes out about my sister’s Autism. How do I know? My oldest sister told me so.

I also experienced grief when I found out that my son had Autism. I got over it! I found out about my own Autism through him. I understand him better because of it. My mother never got over her grief. She thinks she understands Autism. But how can she understand it, if she cannot let go of her grief? She is now in her 80’s.

To have a nurse visit one's household to observe one's mother, and see if one's own mother loved you: This is the kind of thing that I would readily concede to be “urban myth,” to be a “myth” in the sense of a popular fiction or falsehood, about a disguised and even distorted truth. And to hear Jeffries write about this is to realize how, indeed, myths—however fantastic and terrible they may seem—contain some truth: Myths tell us something about how a society perceives and strives to understand the world and all its cavalcade of events and phenomena. Thus, in order to understand how people in previous decades could have believed the now-widely discredited notion of the “refrigerator mother” as the cause of autism,we need also to consider the historical, post World War II, context in the US, a period which saw the rise of such child development “experts” as Dr. Spock and, indeed Bettelheim himself. A theory like the refrigerator mother theory—a psychogenic theory for the aetiology of autism—was the kind of theory that was likely to arise in such a climate of ideas and beliefs.

Part of the mythology of the refrigerator mother theory is, I think, that we today think we are so much more enlightened about autism and that we would never believe something so “obviously” wrong. How could parents in the past have ever believed such a ridiculous notion, we all but laugh—but the reality is that people did believe, that it was fact, not myth, even as today some will go to their graves swearing that vaccines or mercury or some other environmental factor cause their child to become autism, while others will argue that autism is genetic (and cite examples of autistic persons in their family trees, diagnosed or undiagnosed) and that there is more autism being reported because we have a better understanding about what autism is. We are living (in the words of columns written by UPI journalist Dan Olmsted) in the “Age of Autism.”

As may or may not be clear from what I write here, I think that autism is genetic and I think that we are seeing more autism because we are able to see more—we as a culture have a more refined understanding of what autism is, and hence are able to detect it earlier and in more children (and adults); we are also fortunate to be living at a time when there are almost too many different treatment options and protocols for helping autistic children, and at a time when all of this information can be easily accessed via a home computer and the Internet.

Indeed, the Internet and email are two key elements in the circulation of urban myths. I turn to another core fixture of Internet lore—Wikipedia—for a definition of “urban myth”:

An urban legend is a kind of modern folklore consisting of stories often thought to be factual by those circulating them. The term is often used with a meaning similar to the expression “apocryphal story.” Urban legends are not necessarily untrue, but they are often false, distorted, exaggerated, or sensationalized. Despite the name, urban legends do not necessarily take place in an urban setting. The name is designed to differentiate them from traditional folklore in preindustrial times.

Urban legends are sometimes repeated in news stories and, in recent years, distributed by e-mail. People frequently say such tales happened to a “friend of a friend”—so often, in fact, that “friend of a friend”, or “FOAF”, has become a commonly used term for this sort of story.

………………..

Some urban legends have survived a long time, evolving only slightly over the years, as in the case of the story of a woman killed by spiders nesting in her elaborate hairdo. Others are new and reflect modern circumstances, like the story of people being anaesthetized and waking up minus a kidney surgically removed for transplant.

“Often thought to be factual by those circulating them”; “necessarily untrue, but ….. often false, distorted, exaggerated, or sensationalized”; “distributed by e-mail”: How much of your information about autism do you receive via the Internet? To what extent, if at all, does the author of the information that you read identify him or herself and any professional affiiations and philosophic viewpoints? Does the author reference their sources and provide bibliographic information for them? Do you sense irony in anything written by this author; does anything seem hyperbolic and even too good to be true? If you were not a weary, worried parent desperate not to see your child go through the terrible tantrum that he or she went through earlier today (I refer here to myself several years ago, mother of a much younger Charlie, but I suspect that most parents of autistic children have felt this), would you still believe that certain oils or enzymes or shots might alleviate the symptoms of autism and—let's not even talk about mainstreaming—-just help a child not to suffer so much, just to say one syllable of one word?

Another definition of “myth” is that these provide an explanation of how something in the world came to be. For instance, the classical myth of Daphne and Apollo is the explanation for how the laurel tree came to be Apollo's tree, while the myth of Echo and Narcissus explains both what an “echo” is and also how the narcissus flower came to be. These are elegant, yet simple, stories, that provide fairly straightforward answers about phenomena in the world. They are far from scentifically correct; they tell us something about the mentality of the ancient people who created them and to this extent they are true.

But they are not true in the sense that there was some actual anthropomorphic god who chased some nymph who then, on praying to her river-father, became a tree.

Just as the myths—urban or not—of Autismland, of vaccines and epidemics and toxins in the environment are not untrue. These are genuinely believed and thought to be truly true.

And then there is what science and its evidence tell us: No, there is no link, and not, certainly, a direct one.

Why do so many myths about autism—does so much autism mythology—continue to exist?

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