“I am not a puzzle, I am a person”

People with autism don't need to be "cured," argues the burgeoning "autism culture" movement. Not all parents or medical experts agree.

Topics: Environment, Healthcare Reform, Autism, Science

Long before her son Michelangelo’s first birthday, Dana Commandatore began to suspect he was different. The other babies she knew babbled animatedly to everyone in sight. Michelangelo, though, never took much interest in children his age, and by the time he was 18 months old, he still wasn’t speaking. Determined to find out what was wrong, Commandatore took her son to the pediatrician. “They sent us for a hearing test. The technicians were trying to put the headphones on and Michelangelo wouldn’t let them do it,” she recalls. “One tech said to the other, ‘It seems more like autism than a hearing problem.’ I turned around and said, ‘What?’”

When Michelangelo’s autism diagnosis was confirmed soon after, the verdict was more of a relief than anything else — it seemed to suggest a clear course of action. “We knew who he was,” Commandatore says. “Now we knew what to do.” In the process of scouring the Internet, she stumbled across Web sites run by autistic adults who advocated a school of thought they called “neurodiversity.” Autism was not a “disease,” their reasoning went, but a “neurological variation” that ought to be as respected as a difference like skin color or sexual orientation. The Centers for Disease Control and Prevention estimates that the prevalence of autism spectrum disorders in the U.S. is about 1 in every 150 8-year-olds.

The advocates’ core message — that autistic people should be celebrated for their uniqueness, not aggressively “normalized” — struck a chord with Commandatore. She began learning more about the movement and went to hear Ari Ne’eman, president of the Autistic Self Advocacy Network, give a lecture. “I am not a person at all who joins groups. I’m not religious,” Commandatore says. “But when I found Ari’s Web site and saw him speak, he put into words what I had been thinking.”

Like the deaf culture movement before it, the so-called autistic culture movement continues to gain traction, boasting thousands of adherents among parents, patients and healthcare professionals. And the rhetoric is often as strident as anything out of the deaf-pride movement. Some autistic people even use the pejorative term “curebie” to refer to people who hope for a cure for the condition. Organizations like Autism Network International view efforts to cure autism as similar to misguided efforts to cure homosexuality and left-handedness.

As its associated swag — buttons and T-shirts proclaiming “I am not a puzzle, I am a person” — suggests, the movement aims to redefine autism as something to be valued and protected, not obliterated. Proponents insist that forcing autistic people to behave like “neurotypicals,” a term that borders on insulting, squelches the very qualities that make them unique. “The real ends for autistic people should be quality of life, full access in society, the kinds of things we support and are working for,” Ne’eman says. “Parents have been told that the way to approach these things is to support research for a cure, but our belief is that that’s not the most effective paradigm.”

In other words, Jenny McCarthy can go jump off a cliff. While the Hollywood comedian’s claims that childhood shots cause autism may be well-intentioned, Ne’eman says, her message has a pernicious and probably untrue implication: If we stopped giving kids “toxic” vaccines, autism wouldn’t exist. Not only does this message distract from pragmatic efforts to get autistic kids the social support they need, it implies that autistic children are inherently less valuable than their normal counterparts. “The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that’s a significant denial of who we are.”

But it’s not just anti-vaccine diatribes that raise autistic culture crusaders’ ire. Their primary target is something much broader and more insidious: the general therapeutic approach to autism in the medical community. Many autistic rights advocates have spoken out against applied behavioral analysis (ABA), the most common type of autism therapy, developed by UCLA psychologist Ivar Lovaas in the 1960s and ’70s, with the goal of helping autistic children achieve “normal intellectual and educational” functioning. The therapy, which uses repetition and rewards to reinforce new skills, is geared toward extinguishing autistic behaviors such as “stimming” (making repetitive body movements) and failing to make eye contact. One sign of the treatment’s success, Lovaas suggested, might be for school personnel to perceive an autistic child as “indistinguishable” from his or her normal peers.

Approaches like this miss the point entirely, says Kathleen Seidel, the webmaster of Neurodiversity.com and the mother of a child on the autism spectrum. Instead of trying to coerce autistic kids to behave like “neurotypicals,” therapists should focus on helping them deal more effectively with the non-autistic world. “A person’s nervous system is not fundamentally going to change — an autistic person is going to remain autistic throughout his or her lifetime,” Seidel says. “And it can be very problematic and a source of stress for an autistic child to have to suppress certain mannerisms.”

Equally problematic, says Dora Raymaker, a Portland, Ore., artist with autism, is the tendency for medical professionals to impose “normal” behaviors on autistic people — even when those behaviors do not necessarily improve their ability to function. Rather than undergoing continual and grueling speech therapy, Raymaker has fought to express herself via text chat, the communication medium with which she feels most at home. “If we’d done this interview on the telephone you would have been lucky to get much more than disjointed, stuttering, completely non sequitur responses from me,” she told me in an instant-message conversation. “But because you allowed me to do this interview through text-only media where I can slow down, really understand you, and bypass my difficulties with spoken language, I’m able to give you intelligent, on topic answers.”

The key assumption that underlies much autistic culture discourse is that any autism-related limitations can be worked around and dealt with in a way that does not compromise the autistic individual’s core “personhood.” When such workarounds are found, Raymaker asserts, the concept of a “cure” becomes irrelevant. “Do I need a pill to make me suddenly able to have phone conversations, or do I need you to be able to find a middle ground that bypasses my disabilities?”

Some parents and therapists counter that this kind of active opposition to suppressing autistic symptoms is a niche crusade — one mounted by a small, visible group of high-functioning autistics who don’t represent the autistic population at large. If a child stages screaming outbursts in the classroom or has trouble stringing together a complete sentence, New Brunswick lawyer Harold Doherty argues, does it really make sense to treat that child’s condition as “a different neurological way of being,” instead of a disease that imposes severe limitations?

“Some of these advocates oppose a cure and they appear in court proceedings. In all these cases, they’re talking about other people’s children,” says Doherty, whose son Conor is autistic. “Who gives them the authority to represent autistics? What does Ari Ne’eman know about Conor? He has no real investment in my son’s life. There’s a denial in this movement of the challenges of more autistic individuals. It’s not a feel-good story to talk about kids who are smashing their heads into things.”

The question of whether autism should be considered a medical condition or a variation in neural wiring isn’t just one of semantics. If autistic-rights advocates win their court battles, many treatment programs could stop receiving government money. In 2004, for instance, autistic-rights crusader Michelle Dawson convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy. If similar legal efforts succeed in the U.S., says Massachusetts psychologist Teresa Bolick, autistic children could be hampered in acquiring the skills they need to interact with the world.

“One of the main dangers of saying, ‘This is not a developmental disorder,’ is that federal and state governments don’t usually fund intervention for differences,” Bolick says. “Parents say, ‘But what if his natural personality is to be a hermit? What if my son just wants to be like Thoreau?’ I say, ‘You know what, if he wants to be Thoreau, that’s terrific.’ But we need to give people the skills so they can choose whether to be like Thoreau or like a more social person.”

Bolick adds that the justification many autistic culture advocates give for slamming ABA — that the therapy is condescending and attempts to turn autistic children into people they’re not — is strained and largely outmoded. “If we look at contemporary ABA, we see tremendous attention to the individual and tremendous appreciation for personality,” she says. “Old-fashioned behavior modification has the reputation of using aversives and denying individual freedoms, but that’s not the way good treatments are anymore. For the most part, reinforcement is driven by what the kid wants to do. One kid loves it when his teaching assistant draws for him, so he’ll do anything if she’ll draw.”

Ne’eman disputes the accuracy of this portrayal, citing cases in which autistic children were abused and restrained in the name of “therapy.” “There are very significant problems with the way in which intervention is approached,” he says. “The founders of ABA quite unabashedly practiced the use of aversives, including electric shock, and this is something that continues to this day.”

In some cases, inappropriate therapeutic interventions may be a catalyst for antisocial behavior, says Ann Bauer, a Salon essayist who recently wrote about her autistic son Andrew’s violent outbursts. “I believe deeply that one contributor to Andrew’s recent behavior is a system that treats him inappropriately,” Bauer says. “We had an overworked and apathetic state caseworker who consistently placed my son in homes developed for people with IQs of 70 or below because she couldn’t see the difference between this and high-functioning autism. I’m not sure I wouldn’t have gone insane myself if housed in such a place.” Still, she does not solely blame the system for Andrew’s furious rampages. “This is not to say that I don’t hold my son responsible for his behaviors. He behaves cognitively and socially in a way that is completely out of sync with the rest of our world. I guess what I’m saying is, it’s complicated. Is there something wrong with him or something wrong with society or both?”

In theory, neurodiversity advocates fall squarely into the something-wrong-with-society camp. The problem isn’t that they or their children are defective, their thinking goes, but that society simply isn’t capable yet of giving them the accommodations they need. In practice, though, many pro-neurodiversity families take a more nuanced stance on therapy and treatment than heated message-board debates might suggest. Safeguarding a child’s dignity and teaching him to navigate a neurotypical world, they reason, don’t have to be mutually exclusive. “Michelangelo has had a form of ABA three times a week,” Commandatore says, “but it is so loose and we control and guide it. We just say, ‘Look, we don’t stop any stimming behavior.’ But that doesn’t mean you let him do whatever he wants. If he’s stimming and hurting something, you have to stop that. You have to realize what is important and what isn’t.”

Arriving at such realizations is easier said than done. While the autistic culture movement may come off as dogmatic at times, Commandatore says the question of how to raise autistic kids in the spirit of neurodiversity has no clear-cut answer. Her child-rearing strategies don’t radiate from a single ideological core — they’re more cobbled-together, day-by-day solutions to various issues that crop up. Instead of trying to train her son out of his personality quirks, such as strong reactions to loud and sudden noises, she says, “We’ve given him headphones that he can use in public, these big 1970s speaker headphones. If he starts to panic, he asks for his headphones and we give them to him.” She and her husband have also taught Michelangelo how to do deep-breathing exercises whenever he finds himself in a stressful situation, as he did this winter when his first-grade class began preparations for a holiday singing performance. “He was nervous. He said, ‘Mama, I don’t want to sing.’”

Rather than making her son practice the songs over and over until they became rote, as some therapists might recommend, Commandatore decided to give him a choice. “I said, ‘Look, if you don’t want to try this, you don’t have to. I just want you to go up there and stand with your friends, and remember that Mama and Papa love you and we will be here for you.’” Though Michelangelo was skeptical, he agreed to give it a shot. When it came time for his moment in the limelight, he closed his eyes and took a deep breath. A smile slowly spread across his face as he burst into song.

Elizabeth Svoboda is a contributing editor for Popular Science magazine. She lives in San Jose, Calif.

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