Despite the fact that today we know more than we ever have about autism since Leo Kanner first identified the disorder in 1943 and since 1967, when Bruno Bettelheim's The Empty Fortress: Infantile Autism and the Birth of the Self was published, we still talk about autism the same way that we did in the days of both men. Much of what is said about autism in the mass media presents a view of autism that still draws on the metaphors and images of autism used in the 1960s. Autism is still referred to as mysterious"; treatment and the causes of the disorder a "mystery"; and life with autism (for families with an autistic child, and for autistic persons themselves) "hopeless." Despite significant advances in scientific research and in educational methods, the popular representation of autism has not changed from that of earlier decades, and shows little sign of changing. This disconnect between what we actually know about autism and popular representations of autism, persists and ultimately impedes our understanding of autism, of disabled children and adults, and of disability as a whole.
Although research continues to establish that there is no causal link between thimerasol and autism, fears about a connection between vaccines, thimerasol being a mercury-based preservative used in vaccines, and autism remain, and not only among the parents of some autistic children.o represent life with a disabled child as "desperate" or a "tragedy" can have real repercussions not only on the understanding of autism, but in legislation, in the allocation of research funds for autism, and in the direction of autism research. The Institute of Medicine held a Workshop on Environment on April 18th to consider such links. The introduction of the Proceedings notes that
The goal of the workshop was to provide a venue to bring together scientists, members of the autism community, and the major sponsors of autism-related research to discuss the most promising scientific opportunities. The focus was on improving the understanding of the ways in which environmental factors such as chemicals, infectious agents, or physiological or psychological stress can affect the development of the brain. In addition, discussions addressed the infrastructure needs for pursuing the identified research opportunities tools, technologies, and partnerships.
The bulk of the Proceedings is a transcript of what was discussed, as well as an Index of Scientific Opportunities for Human Subjects Research identified by individual workshop speakers and participants (though not adopted, endorsed, or verified). Also included is the workshop agenda and a list of workshop participants, including members of the National Autism Association, Safe Minds, and other biomedical groups who have long raised concerns about “something in the environment” causing autism, and whose views are threaded throughout the workshop’s agenda: Mark Blaxill, who is the Vice President of Safe Minds, was on the Planning Committee for the workshop, and Lyn Redwood, who is the President of Safe Minds and on the National Autism Association’s Board of Directors, is listed as an “Independent Report Reviewer.”
Parents of very young children—babies and toddlers—are indeed more than concerned (despite the fact that thimerasol has long been gone from vaccines). In May of this year, parenting website Babble.com featured an essay by Tara Bishop, M.D., an “Ivy-League-educated, mommy-tracked housewife” doctor who notes “the latest research on autism and vaccinations” as a topic she specifically discusses with her children’s pediatrician. The notion that some distinct thing (like a vaccine or something in a vaccine, or in the environment) can cause autism is straightforward and simple to understand, and it is the very simplicity of such explanations that makes them so appealing, and so readily believed. As Majia Holmer Nadesan notes in Constructing Autism: Unravelling the “Truth” and understanding the social, there was another theory of autism causation in the 1950s and 1960s which also was possessed of a “readable simplicity.” This would be the theory that autism was caused by bad parenting, by cold-hearted, emotionally distant people—the “refrigerator mother” theory of autism that was promulgated by Bruno Bettelheim. Nadesan also notes that “Bettelheim blended his psychoanalytic appropriations with ‘scientific’ findings from ethological theories very much in vogue in the 1950s and 1960s. Because ethological approaches used the empirical methods of the natural sciences to establish parallels between animal behavior and human behavior, they no doubt added legitimacy to Bettelheim’s ideas during a period in which positivism was dominant in the social sciences. Thus, although Bettelheim’s text can be faulted for its gross simplifications, distortions, and eclectic appropriations, his ‘mother blaming’ occurred in a popular and scientific environment already receptive to such arguments (pp. 98-99). Can it not be said that “mercury blaming” as a cause of autism has alike arisen in a “popular and scientific environment already receptive to such arguments”? Today we are “concerned about the environment,” about global warning and climate change, about such inconvenient truths. You can buy fruit in the produce section of the supermarket, or you can buy organic fruit in a special section at higher prices. We worry about air quality, chromium contamination, the pesticides that make the grass green and lower the dandelion count.
Perhaps it is of the times that there is a tendency to see autism as more than partially
caused by something in the environment. How else could autism and asthma both be described as the “new childhood epidemics,” and both be treated according to the same “healing program” in Dr. Kenneth Bockss book, Healing the New Childhood Epidemics?
Both mother-blaming and mercury-blaming point to a single cause for autism. By implicating one causal agent, it seems that the solution for “solving the puzzle of autism” should be so simple to uncover. To one advocacy organization, Generation Rescue, autism is a synonym for "mercury poisoning." "Parents of autistic children are mounting a vicious campaign against scientists who refute the link between vaccines and autism" is an article in the August 1st Nature Medicine. Writer Virginia Hughes finds things have risen to, indeed, a fever pitch as those who are “against mercury” and specifically, “against mercury” in the form of thimerasol in vaccines, and who (like the Moms Against Mercury) protest against those they see as the arch-enemy, such as Paul Offit, Professor of Pediatrics and Chief of the Division of Infectious Diseases at the Children’s Hospital of Philadelphia (CHOP), who has been referred to as a “devil” and a “TERRORIST” and received a death threat and emails containing the names of his children and of their school.
Journalist David Kirby's Evidence of Harm: Mercury in Vaccines and the Autism Epidemic - A Medical Controversy, argues that autism is mercury poisoning, a devastating biomedical disorder caused by some environmental agent. In the December 2006 Huffington Post in an article entitled "There is no autism epidemic," he wrote “Columbus was not in the Indies, mercury doesn’t cause autism, and there is no autism epidemic.” Kirby, noting that he has been “vilified” by those who “insist that mercury does not cause autism, that autism is a stable genetic condition, and that it cannot be an ‘epidemic,’” proclaims that he wishes to start the New Year with a “truce” in the form of acknowledging “a movement that refers to itself as the ‘neurodiversity’ community” (the quotation marks around “neurodiversity” are Kirby’s).
Kirby defines this “movement” as composed of adults with autism and primarily with Asperger’s syndrome who “argue passionately that autism is neither a disease nor a disorder, but rather a natural and special variation of the chance genetic imprint left upon human behavior.” Further, Kirby states, the members of this “movement”
of the “neurodiverse” have high-functioning autism; those with Asperger’s have “very high functioning autism.” Kirby then contrasts these high-functioning neurodiverse autistic adults with autistic children who rather (says Kirby) “suffer from some other condition entirely.” The particular challenges of these children are detailed in a list of increasingly severe symptoms and behaviors: These are kids who “may never learn to read, write, tie their shoes or fall in love”; who “have bitten their mother so hard and so often, they are on a first name basis at the emergency room”; who “spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don’t even realize it when their dad comes home from work.” These are the kids whom Kirby wants to see cured, but not from autism. Kirby suggests that these kids do not have autism, if this word refers to what those high functioning “neurodiverse”have. (He even proposes, only half-jokingly, that this new non-autism disorder be called “Environmentally-acquired Neuroimmune Disorder” or E.N.D. an acronym that he proceeds to pun on.)
Kirby’s distinction between high functioning autistic adults and adults with
Asperger’s syndrome as thoroughly different in their abilities—if not in their diagnosis— and those with “low functioning” or “severe” autism (especially those who are non-verbal children with aggressive and self-injurious behaviors) is one that I have been hearing a lot of. Autism Speaks Senior Vice President Alison Singer made the same distinction in her article, “Cure” is Not a Four-Letter Word; Portia Iversen makes it on p. 376 (in the last few pages) of her book Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism: “We didn’t come out for the [CAN fundraising] walk to show our pride, there was no upside to having autism unless you were the very highest functioning type.” It seems that Iversen, Singer, and Kirby are presenting arguments for the dismantling of the notion of the “autism spectrum,” in which those with autism are seen as having certain similar impairments (in communication, social ability, and behavior) but at different levels of severity. Iversen hypothesizes that there are two types of autism, one auditory (and found among those who are “low functioning” and one visual (and found among those who are “high-functioning”). Singer writes that “classic autism” is at the end of a “too wide” spectrum, at the far end of which is Asperger’s. Kirby cordons off “the neurodiverse” from those children suffering from “E.N.D.” I quoted Kirby’s writing above regarding Charlie sometimes ending up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet, and noted that Kirby’s example is “not entirely true” for us, because we do not have a pet and I have no favorite carpet. Even more, Kirby’s rather purple prose does not really capture what it is like to be finding such “rivers” and “swirls” upon one’s own person and one’s best work clothes, not to mention everywhere on one’s child, toilet, sink, walls, the child’s clothes, and to be laughing and praising one’s child because some of the swirl got where it should have and because he has grabbed a Kleenex and is trying to wipe up the mess. What autism is, and how many persons are autistic, are far more complicated— composed of muddier waters—than rhetoric like Kirby’s can express.
It is necessary to foster more positive representations of autism and life with autism in order not to see autistic persons as broken and diseased beings who need to be fixed and made "non-autistic." This task is easier said than done; attempts to change stereotypes about autism can sometimes result in more misunderstanding. Life with autism is only so terrible as we choose to represent it as such. While it is necessary to show compassion for parents who have difficult lives and have made sacrifices for their autistic children, the majority of our concern needs to start with the autistic persons, and to think about how we represent them. Otherwise, we are only reinforcing myths and stereotypes about autism.
“What is Chinese tradition and what is the movies?” writes Maxine Hong Kingston at the beginning of The Woman Warrior: Memoirs of a Girlhood Among Ghosts, which was published 30 years ago last fall. To restate the question: What is autism and what is the movies? Or: How autistic is Rainman?
Without hesitation and certainly without apology, Kingston combines myth—the story of a “No Name Aunt” who throws herself and her illegitimate baby down a well; of Hua Mu Lan, a “Chinese folk heroine” who disguises herself as a man to defend her village—with her life growing up as the daughter of immigrants who own a laundry in agricultural Stockton, California. Critics have long attacked Kingston for “presenting a Westernized, sanitized view of Chinese culture (by, among other things, comparing Hua Mulan to Joan of Arc).” Her flagrant melding of the fantasies of Chinese myths with her memories of growing up Asian American has led to criticisms that The Woman Warrior makes it seem that “all Asian Americans” (or at least all Chinese Americans, to which group I belong) alike inhabit a magical realist world in which the mythical, the supernatural, ghosts (as Kingston translates gwai) are just around the corner, or even in the next thought.
This mixing of the mythical and the real is deliberate, as suggested by that question I quoted at the start: What is the “real” Chinese tradition and what is representation and imaginings like those of a movie—what is “really” Chinese vs. a representation of being Chinese? Does not Kingston’s own combining of Chinese myth and her American life in her memoir not veer dangerously close to the fantasies, the dreamland, that come out of Hollywood? Or is the point rather that, as Jess Row in a March 27th essay on Slate suggests, that “our mental lives are made up of overlapping narratives—some invented, some inherited, some remembered—rather than one sequence of “true events”—that to write one’s life, a little invention may be required? The genius of The Woman Warrior is precisely that Kingston announces this notion from the start: To write one’s past, some myth-making is inevitable and caveat lector— especially the reader who is not aware that, when it comes to memoir writing, the truth is there, but maybe at a slant.
The Woman Warrior can also be seen as a myth-busting book; its very title suggests that, contrary to any previous cinematic stereotypes of Asian woman dutifully obeying a father or husband, this book’s narrator is a fierce and independent fighter. “[T]o write autobiography is to stand at the borderline between memory and invention,” says Row on The Woman Warrior’s simultaneous myth-making and myth-undoing. This is why the book’s subtitle is Memoirs of a Girlhood Among Ghosts: Kingston understand that there are the facts of life, the “what truly happened” (wie es eigentlich gewesen ist, in the words of my high school history teacher, who was himself German, quoting Leopold von Ranke), and then there is how you turn that into art; into a memoir, that takes the reader into and through your memories and on a journey into how the you that is writing these pages became that You of today; became an I, an ego, a coherent, unstrange self.
What is autism and what is Rainman ?