Autism, Language, and Eugenics in the 21st CenturyAugust 10th, 2009
Why some worry the rhetoric of autism might be the difference between life and death
by Jacob Hodgen
This is a follow up to an article written in May, which can be found here. The previous article discussed side effects of the debate surrounding autism causality.
Autism is classified by the American Psychiatric Association in the DSM-IVTR as a brain development disorder that impairs the ability for social interaction.
Though the wording of this statement might seem benign, some autism advocates consider it to be not only offensive but potentially deadly. With the possibility for sweeping health care reforms in the near future, billions of dollars hang in the balance over these few words. Even more than the money, though, are the very lives and culture of a nascent autistic community, which some worry is threatened by the very language used by others to describe it. In response to this, some autism activist groups are extending their campaign to the field of rhetoric. With stakes this high, it's not surprising that controversy continues to build.
And we haven't even started talking about vaccines.
Sticks and Stones: The Language of Autism Advocacy
Utah is a major player in the autism debate with numerous local organizations, a well organized cadre of concerned parents, and cutting edge research by the University of Utah shaping the future of autism treatment and awareness. However, there are a series of deep rifts between many of these groups that otherwise have quite a bit in common.
While you might think that "curing" autism is something everyone could agree on, this is now a major point of conflict. One such voice in this debate is the Aspies for Freedom (AFF) group. The AFF is opposed to organizations like Generation Rescue and others who support alternative treatments like chelation, which the AFF believes is unethical and dangerous. The AFF mission statement articulates the nature of their concern surrounding the rhetoric of autism:
We have the view that aspergers and autism are not negative, and are not always a disability. We know that autism is not a disease, and we oppose any attempts to "cure" someone of an autism spectrum condition, or any attempts to make them "normal" against their will. Part of the problem with the "autism as tragedy" point of view is that it carries with it the idea that a person is somehow separable from autism, and that there is a "normal" person trapped "behind" the autism. Being autistic is something that influences every single element of who a person is--from the interests we have, the ethical systems we use, the way we view the world, and the way we live our lives. To "cure" someone of autism would be to take away the person they are, and replace them with someone else.
They aren't the only ones with this concern.
Ari Ne'eman is the president of the Autistic Self-Advocacy Network, which seeks, "to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people." Ne'eman has challenged some of the big names in autism for promoting what he feels are dangerous stereotypes. He helped stop an edgy advertisement by NYU's Child Student Center entitled "Ransom Notes." As someone who has Asperger syndrome himself, Ne'eman was horrified by the ad's message that he was doomed.
What makes this an especially tricky situation is that both sides have the best of intentions. But it's not just his identity and potential discrimination that Ne'eman is worried about. Already at his doorstep is the very real threat of genocide under the guise of the increasingly popular trend of pre-natal testing. The AFF writes, "A recent study has shown that 91-93% of fetuses that test positive for Down syndrome are aborted. As autism is genetic, if these figures were similar for a pre-natal test for autism, the autistic population would be decimated, and autistic culture would be destroyed."
To borrow from the popular aphorism, one might paraphrase this bleak sentiment as the following: sticks and stones may break your bones, but words can ignite a mass eugenics project. It's a frightening prospect that has many people on edge.
Pragmatic Considerations from "the Trenches"
One criticism some level at groups like the AFF is that its members do not typically experience many of the severest side effects that can accompany autism. The cognitive ability to argue about the nature of one's personal identity is a luxury some do not have. One Utahn who knows all too well just how distressing autism can be is Elayne Pearson from Richfield. Elayne's diverse credentials include motivational speaker, author, health store owner, and Mrs. Utah 2001. Her daughter Heidi was born with Down syndrome and was subsequently diagnosed with late-onset autism at the age of 13.
I recently asked Elayne what she thought about Ari and his concerns about the language of autism. She told me, "I loved reading [about] Ari Ne'eman. I'm so happy that he is doing well and trying to create awareness and get people to think about how we view any 'disability.'"
However, Elayne's daughter has had a much different experience than Ari. "My background is living in the trenches trying to do everything that the physicians tell me only to see it getting worse," she says. After her diagnosis, Heidi became progressively worse and grew more detached from her family. She lost the ability to speak and had no interest in other people, among a host of other debilitating medical conditions. For Elayne, the change was heartbreaking. "Our quality of life was turned upside down. It affected every one of us."
Fortunately, Elayne says that Heidi made vast improvements after she, "found health clinics, books, and holistic practitioners who get results. After a decade of autism, our diligence resulted in her return of health, sweetness, and engaged emotions. We've got our Heidi back!"
She tells me that the experience changed their lives forever. "My heart goes out to individuals diagnosed on the autism spectrum who are so frustrated with their inability to reach their goals, experience the normal milestones in life, and thus suffer from depression, bouts of rage, and even physical illness. I believe that those are the people that we 'autism advocates' are trying to help out. Ari is certainly the exception to the rule."
Though Heidi and Ari are at different ends of the autism spectrum, Elayne has her own experience with the rhetoric of medicine. She says that when Heidi was born, the hospital staff told her that modern society doesn't call them "Mongoloid babies any more, it's Down's syndrome or disabled." Later, when she researched Dr. Langdon Down's old papers from the London hospital in the 1860's, she was, "shocked to find that he often referred to these people as idiots an imbeciles! I'm really glad we've come a long way in making the terms more respectful today."
As for autism, she reports that, "as a 21 year veteran of this army, I've seen that the wording changes about every 5 to 8 years or so." Elayne isn't worried too much about political correctness; she finds that the language of autism provides an insight into one's ideology. "Personally, the more I research autism, the more I see the autism terms shift according to the belief system of the individual speaker. It appears to me that those who think this diagnosis is hopeless often call it a disease, while those with more understanding may term it a 'disorder.'"
For Elayne, her research and experience now indicate that autism could be termed, "toxin overload with severe nutritional deficiency."
Elayne says she can sympathize with Ari and the AFF's concerns, but for her family, there was little room for doubt as to the negative status of autism. She reports that she was able to turn around many of the most debilitating symptoms of her daughter through alternative therapies, such as those outlined in the Defeat Autism Now! program, of which she is a firm proponent. I asked her if the word "cure" is part of her autism vocabulary. "I don't know that anyone has ever been cured," she says. "But, they definitely can improve and increase their quality of life. Various interventions have helped thousands of children improve physically, mentally, and cognitively." This is good news however you word it.
Elayne now travels as a speaker and advocate for the disabled, and she has recently authored a book entitled, Learning to Dance in the Rain: A Mother's Holistic Approach to Helping her Child with Down Syndrome and Autism.
Finding Common Ground for the Future of Autism Advocacy
Dr. Judith Pinborough-Zimmerman is the director of the Utah Registry of Autism Developmental Disabilities (URADD) and is an Assistant Professor at the University of Utah. She is also very concerned by the rapid rise in autism cases within recent decades. I asked her what role she thinks rhetoric plays in the study and treatment of autism and where she stands in the debate. For her, autism is a highly individualized condition, which she explains this way: "What do they say. . . If you've seen one child with autism, then you have seen one child with autism."
Her research provides her with the chance to meet people at all levels of the spectrum. "I think it is important for families to realize that they can do everything 'right' by their child and they may see minimal or no changes in their child. The tragedy or 'act of violence' from my perspective is if they blame themselves for their child not being cured. My wish for parents is that they are good to themselves."
Dr. Pinborough-Zimmerman is not opposed to some of the alternative therapies that have well documented data and research to support their efficacy and use, and she says she welcomes the experience and knowledge of parents. She tells me that the U of U's autism research is designed to take multiple approaches, including the study of genetics, immunology, and environmental factors. "Personally I very much value having contrary points of view with regard to the cause and treatment of autism." She reports that it is the passion and drive of everyday advocates that has, "created an atmosphere whereby those in the research arena are encouraged to closely evaluate the efficacy of the current treatment methodologies they are using and the development of new approaches."
While the controversy surrounding the many facets of the autism debate is not likely to be resolved anytime soon, perhaps the mere fact that there are so many people involved in the discussion is a partial success in and of itself for all parties involved.
"For me, truths come from all sides of the debate," says Dr. Pinborough-Zimmerman. "Sometimes the answers come from where you least expect. We just need to be listening and pursue them."
Futher Reading:
Aspies for Freedom
Autistic Self-Advocacy Network
Autism Council of Utah
Elayne Pearson's website
Generation Rescue
Utah Autism Foundation
URADD
Join the Discussion
Share your thoughts and experiences via the reader forum below. No sign up or email address required.
