Reasonable people, p.2
Reasonable People, page 2
Recently, in the New York Times, after a long series of articles bemoaning autism, an article appeared that reflects the kind of perspective I’m advocating. Entitled “How About Not Curing Us, Some Autistics Are Pleading,” the article spoke of a “growing number of autistics [who] are staging what they say amounts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to ‘defend the dignity of autistic citizens.’ ” It mentioned Joe Mele, 36, “who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently.” “ ‘We need acceptance about who we are and the way we are…That means you have to get out of the cure mindset,’ ” Mele said. No matter how hyperbolic it might seem—and to the parents of some children with autism it seems outrageous—this perspective allows the Autist to feel good about him- or herself. When parents objected to the disease-as-identity framework, claiming that people with the most severe form of autism can’t afford such a precious politics,
the three owners of autistics.org, a major Web hub of autistic advocacy, issued a statement listing their various impairments. None of them are fully toilet-trained, one of them cannot speak, and they all have injured themselves on multiple occasions. They wrote, “We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic.”
The Canadian writer and blogger Estee Klar-Wolfond, founder of the Autism Acceptance Project, even speaks of the “joy of autism,” and her Web site begins with this lyrical mantra: “Because finding joy doesn’t come without struggle; because the point is to find it; because if an autistic person calls autism a way of being, not an illness, then it is; because every human has value and is a joy; because despite inhumane acts, I believe in humanity; but most of all, because of my son Adam.” Shocking this celebration of dis-ability and staunch refusal to apologize for autistic “behaviors” (the very thing that a major form of therapy seeks to eradicate). Now, though you might not want your child to be diagnosed with autism and though you might work assiduously to ameliorate its impact, you’d certainly want, if faced with a diagnosis, for your child to feel good about himself. As the father of an Autist, I can tell you that feeling good about oneself is a big problem for people with autism. What do you say to an eleven-year-old who so understands the world’s intolerance of difference that he starts announcing on his computer at night, “freak is ready for bed”? Like other people with disabilities, some with autism have found that identity politics offer a vehicle for fighting discrimination and improving self-esteem. It locates the problem with difference where it should be: outside of the self, in a world of ignorance and fear.
And yet, for all of the recent progress in how we conceive of autism, a dire medicalized view continues to prevail. Even when a particular individual manages to triumph over a diagnosis of mental retardation, there’s always some expert ready to discount him or her—if only by calling the individual an exception, not someone from whom we might learn something revolutionary. Here’s Lorna Wing in the foreword to Tito’s book The Mind Tree (subtitled A Miraculous Child Breaks the Silence of Autism):
It is important to emphasize that Tito showed, very early on, clear signs of good cognitive ability through his recognition of and ability to match numbers, letters and shapes. This encouraged his mother to work with him, using her truly remarkable intelligence, ingenuity and dedication, with the results we have seen. Children who do not exhibit any signs of good cognitive ability are very unlikely indeed to develop skills through any method of teaching, including facilitated communication. The fact that Tito began to write for himself at the age of six is corroboration of the fact that the ideas he expresses are his own.
As my wife, Emily, an inclusion expert, has put it, “What, exactly, is Wing trying to achieve with this statement and what good does it do anyone to listen to it? What might hope endanger?” The answer to this final question: Wing’s very paradigm, her professional expertise. Of “counter-instances” Kuhn writes, “By themselves they cannot and will not falsify…[a] philosophical theory, for its defenders will do what we have already seen scientists doing when confronted by anomaly. They will devise numerous articulations and ad hoc modifications of their theory in order to eliminate any apparent conflict.” At the age of six, when my son came to live with us, he was still in diapers and showed few if any signs of cognitive ability. But why should the prior demonstration of ability constitute the prerequisite for effort and training? Does an infant exhibit the skill, say, to write a poem? It is only our faith that she might one day be capable of doing so, our faith and our effort, hour after hour after hour, that make it happen. In sum, why not discover the limits of hope, if hope has limits, rather than predicting them pessimistically.
If you think I’m being too hard on Wing, consider the conclusion to her foreword, where she tries to preserve a central component of her theory-of-mind hypothesis: the self-absorption of people with autism:
Tito’s writings are characteristic of someone with an autistic disorder in that they basically revolve around himself and his personal experiences. When one considers the physical and psychological disabilities he has to overcome, this self-absorption is perhaps not so surprising. Despite this, his writing provides a vivid description of what it is like to be autistic and his thoughts about the meaning of life…. Individuals with autistic disorders are endlessly fascinating. Those like Tito, with remarkable skills in contrast to their general level of disability, arouse feelings of wonder, astonishment and intellectual curiosity, which are among the many rewards experienced by those working in this field.
Self-absorption? Wing is speaking about the genre of autobiography, after all! By this reasoning, any life-writer would be autistic, really any American. Moreover, it is Wing who comes across as self-absorbed. Observe how quickly she turns her attention to herself and her profession. She’s more interested in a freak-show mentality—all of that “wonder, astonishment and…curiosity”—than in what Tito actually has to say, what he teaches us. Perhaps “autistic” ought be reserved as a modifier for narrow-minded scientists, if not for any neurotypical person empathetically challenged. Indeed, in the book I suggest that most Americans have “no true concept of, or feeling for, other minds,” and might, thus, themselves be labeled “autistic.” As DJ reminds us, this great country abandons the poor and disabled alike.
Even Sacks, who has been deeply influenced by Wing’s work, understands that something is changing. On the back of Tito’s book he proclaims, “The book is indeed amazing, shocking too, for it has usually been assumed that deeply autistic people are scarcely capable of introspection or deep thought, let alone of poetic or metaphoric leaps of imagination—or if they are, that they are incapable of communicating these thoughts to us. Tito gives the lie to all these assumptions, and forces us to reconsider the condition of the deeply autistic.” Of course, eight years earlier in An Anthropologist on Mars Sacks wrote, “When I first read [Temple Grandin’s] book, I could not help being suspicious of it: the autistic mind, it was supposed at the time, was incapable of self-understanding and understanding others and therefore of authentic introspection and retrospection. How could an autistic person write an autobiography?” The similarity of these two responses suggests how entrenched the theory-of-mind hypothesis is; though the Tito blurb indicates a desire to move beyond the present understanding, it almost seems stuck in the syntax of surprise. Along with Amanda Baggs, a critic of the marketing of Tito’s “miraculous” book, we might ask, “How many times must the experts be forced to reconsider before they consider?” Tito is most certainly not the first nonspeaking Autist to manifest “authentic introspection,” as Baggs points out, despite the book’s “miraculous” claim. Shouldn’t Sacks be more aware of the many exceptions to the rule? Baggs asks, “What planet have these ‘experts’ been living on since 1985? Have they been studiously ignoring David Eastham? Sharisa Kochmeister? Lucy Blackman? Sue Rubin? All the others like them?”
I’d like to add my son’s name to that list, eschewing claims of autistic exceptionality. I’d only propose that DJ’s early life experiences—poverty, abandonment, separation from his sister, foster care, physical and sexual abuse—mark him as especially challenged. If DJ, a “classic” case of hopelessness, can achieve, how many other kids might as well? I don’t know the answer to this question, except to say that more than we think—but only if we work to make this occur. Can I argue for a paradigm shift if I’m uncertain of how prevalent these “counter-instances” are? Perhaps there’s just a subset of people with “classical” autism who can communicate, but let’s find this out after we’ve adopted different assumptions and devoted ourselves to the task of developing potential. Even this more modest possibility would mean that scores of people could be leading very different lives from the ones they are presently leading. At least then, the experts would have to stop speaking of “classical” autism generally—as one “disorder” with one grim prognosis.
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When Wing writes of the unlikelihood of any kind of intervention having a positive effect on the vast majority of those with “classical” autism, she mentions the technique of facilitated communication explicitly. That technique is the primary means by which my son and most of the Autists I’ve cited communicate. The subject of much controversy in the early 1990s, FC, in Rosemary Crossley’s words, is “simply a way to help improve someone’s ability to point.” Citing problems in Autists with “finger isolation,” “tremor,” “radial ulnar instability” (“the wrist bends and the person veers to the left or right, depending on whether left or right handed, when pointing”), “perseveration” (“repeating the same action multiple times”), “initiation difficulty,” “proximal instability” (“difficulty separating movement of limbs from the trunk”), and “proprioceptive awareness” (“awareness of location of body parts in space”), Crossley proposed providing hand, wrist, or arm support so that nonspeaking people might be able physically to communicate. When many of these people began to type sentences, thereby freeing themselves from labels of profound mental retardation, the world cried, “Hurrah!” and, then, soon after, “Hoax!”
Unfortunately, the phenomenon became entangled in the sex abuse hysteria of the same period, with children typing allegations against their parents and caregivers, and in unsympathetic authentication procedures that revealed questionable authorship. It became too easy to suspect a method that often had, at least at the outset, a facilitator’s hand entwined in the Autist’s, as the latter marveled people with flights of sentient fancy. In addition to genuine concerns about fraudulent communication, of which there was plenty, there were, it must be said, careers to protect, ideas of autism to be enforced. How could an Autist express himself if he had no theory of mind? He had no theory of mind; therefore, he couldn’t be expressing himself. The end result: the phenomenon was dismissed outright.
Very quickly, scientists and education specialists refused to associate themselves with FC, for fear of having the accusation of quackery rub off on them. The technique, however, didn’t disappear completely; rather, it went underground. Doug Biklen, the man who brought the technique to America from Australia, and his colleagues at Syracuse University remained outspoken—a bit like scholars under house arrest, free to do their work but not to circulate. In the last three years, I’ve met all sorts of people who told me that their daughter or nephew uses facilitated communication when I admitted that my wife and I use it with DJ, but it’s all very hush-hush. I’ve even met doctors who swear by the practice but who won’t recommend it to their patients. A lot is at stake in this debate, and FC’s opponents have been vicious. Biklen was lampooned and sued for thirty million dollars. Recently, he was subjected to an on-line “statement of disapproval of the research and teacher education communities in special education,” a statement signed by scores of professionals in the field, after Syracuse appointed him Dean of its School of Education. The statement accuses Syracuse of “selecting someone whose record constitutes an argument against rigorous science in research involving individuals with disabilities.”
And yet, even as some FC users have accomplished the goal of independent typing, thereby doing away with the question of authorship altogether, the scientific community has refused to reconsider its blanket repudiation. To this day, the American Psychological Association refers to facilitated communication as an unproven technique, though now, more than ten years after the initial controversy, there exist nearly as many studies offering support for the technique as debunking it. A book called A Passion to Believe: Autism and the Facilitated Communication Phenomenon would have us understand FC as an example of the most desperate sort of wishful thinking. And yet, if anything, I have detected a passion to disbelieve in purportedly objective discussions of the technique.
In response to the recent Academy Award–nominated documentary about Sue Rubin, Autism Is A World, Gina Green, former president of the Association for Behavior Analysis, insisted that Sue’s independent typing is a sham: “Very subtle influence can affect people’s behavior. It doesn’t even have to be touch. It can be the slightest sound, the slightest visual cue.” Green further implied that the film, which CNN coproduced, might have been edited to facilitate the illusion. “You can edit videotape to show whatever you want. They’ll show you a close-up of the finger moving across the keyboard…but you’re not getting what else is going on,” Green claimed. Playing the psychologist and cynical economist, she concluded that because FC proponents were so “invested emotionally, and even financially, in a very public way, they find it hard to back off.”
Sid Bedingfield, Senior Vice-President of CNN Productions, responded to the Washington Post article in which Green’s comments appeared by noting that neither Green nor the reporter had bothered to interview Sue “before raising such a serious allegation.” “A Newsweek reporter,” he writes, “spent two days with Sue and came away impressed.” Why didn’t Gina Green ask to see Sue before calling her a fraud? Why doesn’t she want to see her now? Why doesn’t Fred Volkmar, director of autism research at Yale and primary author of the autism chapter in the DSM-IV, who, the Post article says, “personally has never seen a case of validated FC”? You’d think if he were interested in “classical” autism, he’d be banging on the door of Sue’s small house, where she lives, with assistance, independently. You’d think other experts would as well. And not just Sue’s door, but Tito’s, Lucy’s, Larry’s, Sharisa’s, Alberto’s, Richard’s, Jamie’s and a host of other people’s as well.
As I write this introduction, the tide is beginning to turn. A recent People Magazine article featured a story on Jamie Burke, who types independently and has learned how to speak while typing and/or reading something that he has typed. A fascinating development if ever there was one. A million questions come to mind. Why only something that he has typed? What was it about the physical act of typing that allowed him to acquire speech? Again, you’d think that the experts would be traveling to Syracuse, where Jamie lives, to interview this “classical” Autist. Another news source featured a story about Sean Sokler, a twenty-four year-old senior at George Mason University, who uses FC to communicate. Graduating with a degree in psychology, Sokler, the article relates, can translate as many as ten languages: an ability that must have come in handy when battling the skeptics. All you’d need is a facilitator who doesn’t speak Russian, who doesn’t even know the Cyrillic alphabet, say, and you could test Sean’s authorship. The article quotes Associate Professor of Astronomy Rita Sambruna, who says that he was “one of the best students [she] ever had.”
I write of independent typing as if it were a self-evident phenomenon. It’s not. Some FC users require a facilitator to stand behind them while they hunt and peck or to hold an arm a few feet above their composing hand. Some need the intermittent touch of a finger on their shoulder or leg. All began with massive amounts of facilitation at the hand, but gradually over time their facilitators withdrew support—from the hand to the wrist to the arm to the shoulder. Jamie Burke was five when he started typing; Sue, thirteen, and Larry Bissonette, nearly thirty. Biklen has made videos of various independent typists (including these three), but the videos have, until recently, received little attention. Independent typing, it must be pointed out, can take years to accomplish, and no one knows exactly why some accomplish it and others do not. No one knows why some need that regular tapping on the shoulder or leg. No one knows, for that matter, what role psychology plays in this phenomenon, especially when the Autist wants his facilitator to stand behind him—though the locution, in its idiomatic inflection, probably tells us some of what we need to know.
Undoubtedly, there were instances of fraudulent communication back in the early 1990s, plenty of them, as I’ve already stated. Some of these instances had far from innocuous consequences, and I share the concern of experts who want to be certain that the writing of FC users is legitimate, particularly when something as serious as a charge of sexual abuse emerges. I’m with Margaret Baumann, a neurologist at Harvard who appears in Autism Is A World and who is quoted in the Washington Post article as saying that FC was “oversold in the beginning” and then, like the proverbial baby, “thrown out with the bath water.” But one would want to ask about even those cases of fraudulent communication: under what circumstances did the Autist fail to convince and, even more important, how long had he or she been using facilitated communication? This latter question, of course, pertains to the facilitator with equal urgency. “Rigorous science in research” is crucial, but such “rigor” must involve more than citing the infamous Frontline documentary and subsequent studies that discredited FC. It must account for different studies and basic, message-passing protocols that have supported it. It must account for those who now type independently or very nearly independently (finger on the shoulder, tapping on the ankle, etc.).
