Even among the misfits of Greendale Community College, Abed stands out. As Danny Pudi plays him on NBC’s blissfully warped “Community,” Abed is overeager, socially awkward and almost always inappropriate. He has, as one character tells him, “a disorder” he might want to look up. More explicitly, it would appear Abed has Asperger’s, a condition better known to smirking denizens of Greendale as “assburgers.”
In just three episodes, Abed has evolved from a potentially cruel punch line into a nuanced, fascinating and, thank heaven, still hilarious character, one who observes that documentaries are “like real movies but with ugly people.” His frequent cluelessness is a rich source of comedy, but he keeps the upper hand by being the source of the joke instead of the butt of it.
Last week, Abed, spurred by a classmate, took an introductory filmmaking class. His new obsession threatened to alienate everyone in his life, particularly his conservative, immigrant father. But in a witty scene with just the right amount of pathos, Abed showed his dad his short film -- a weird, dark little take on his mother’s abandonment. He had, movingly, found a way of expressing himself. And then he said something offensive.
The pleasure of Pudi’s performance is the way he lets Abed be as utterly exasperating as he is bright and talented. He’s not the huggable romantic hero of “Adam”; he’s just another goofus in the ensemble. Watch Pudi rap in Spanish or try his hand (and foot) at crunking, and behold the joy of an actor being funny without making fun.
In the recent Tom Hanks/Ron Howard film "Angels & Demons," science sets the stage for destruction and chaos. A canister of antimatter has been stolen from CERN — the European Organization for Nuclear Research — and hidden in the Vatican, set to explode right as a new pope is about to be selected.
Striving to make these details as realistic as possible on screen, Howard and his film crew visited CERN, used one of its physicists as a science consultant, and devoted meticulous care to designing the antimatter canister that Hanks' character, Robert Langdon, and his sexy scientist colleague, Vittoria Vetra (Ayelet Zurer), wind up searching for.
But there was nothing they could do about the gigantic impossibility at the center of the plot. While the high-energy proton collisions generated at CERN do occasionally produce minute quantities of antimatter — particles with the opposite electrical charge as protons and electrons, but the same mass, which can in turn be combined into atoms like antihydrogen — it's not remotely enough to power a bomb. As CERN quips on a Web site devoted to "Angels & Demons," antimatter "would be very dangerous if we could make a few grams of it, but this would take us billions of years."
As its Web site attests, CERN has been forced to develop some pretty sophisticated P.R. tools in recent years. Before "Angels & Demons" came out, the institution had to counter widespread but baseless public concerns that its Large Hadron Collider — the source of antimatter in the film — might create black holes that would grow to devour Earth and kill us all. CERN researchers received death threats; lawsuits were filed to stop the collider's operation. (Granted, the scientists scored a considerable hit when their hilarious YouTube video, the "Large Hadron Rap," went viral and garnered more than 5 million views.)
The experience of CERN is, more broadly, the experience of science in our culture today. It is simultaneously admired and yet viewed as dangerously powerful and slightly malevolent — an uneasiness that comes across repeatedly in Hollywood depictions. As science-fiction film director James Cameron ("Aliens," "Terminator," "Titanic") has observed, the movies tend to depict scientists "as idiosyncratic nerds or actively the villains." That's not only unfair to scientists: It's unhealthy for the place of science in our culture — no small matter at a time of climate crisis, bioweapon threats, pandemic diseases and untold future controversies that will surely erupt as science continues to dramatically change our world and our politics. To begin to counter this problem, though, we need to wake up to a new recognition: Fixing the problem of science education in our schools, although very important, is not the sole solution. We also have to do something about the cultural standing of science — heavily influenced by politics and mass media — and that's a very different matter.
There can be little serious doubt that entertainment depictions have consequences. Entertainment industry expert Marty Kaplan, director of the Norman Lear Center at the University of Southern California's Annenberg School for Communication, perhaps puts it best when he describes Hollywood films as the "unofficial curriculum of society."
What do we learn from this curriculum about science? Well, just ask America's kids. Researchers who have studied the stereotypical views of scientists held by American schoolchildren report that when they encounter real-life scientists who visit their classroom, the kids think someone's pulling their leg, because the scientists aren't anything like the big-screen version — mean, male, gray haired and mad. As one study author explained to the magazine Nature: "They might say the person was too 'normal' or too good-looking to be a scientist. The most heart-breaking thing is when they say, 'I didn't think he was real because he seemed to care about us.'"
To some extent these depictions may be changing today, as Hollywood appears to be finding a new interest in science. Yet with such images having been predominant for so long, is it any surprise that most Americans can't name a scientific role model? And that those who can tend to name people like Bill Gates, Al Gore and Albert Einstein, who are either not scientists or not alive?
To better understand why science fares as it does in our culture, perhaps it will help to grapple with the legacy of a man who contributed vastly to science's popular image today and who also embodied the seductive power of anti-scientific thinking: the late novelist, screenwriter and sometime anti-global-warming advocate Michael Crichton.
An M.D. who became a phenomenal entertainment industry success, Crichton was very much science's man in Hollywood. Even with his many science-centered hits, ranging from "Jurassic Park" to "ER," he still found time to lecture to scientific institutions and compose numerous nonfiction essays sharing his views on matters ranging from science in entertainment to climate change. He was, through and through, a paradox. His plots were meticulously researched and filled with science; yet at the same time — and most memorably in "Jurassic Park" — they depicted science going out of control, running amok, so that before long the bodies begin to pile up (or get digested).
And then toward the end of his career, Crichton produced a book that, for many in science, will live in infamy: 2004's "State of Fear," whose plot involves eco-terrorists trying to create natural disasters that will scare the public about global warming — which doesn't, in the view of the novel's heroic scientist-protagonist, even exist.
Let's take these two halves of Crichton in sequence, as both embody important lessons about science in our culture. First, science in the entertainment media. Crichton had little patience for scientists' complaints about ridiculous sci-fi plots and wild scientist stereotyping. In a 1999 lecture before the annual meeting of the American Association for the Advancement of Science, he countered such gripes with his own perspective on why scientists will probably never be very happy with the products of Hollywood. As Crichton advised, there are at least four important rules of movies that just don't mesh with the real process of research: "(i) Movie characters must be compelled to act. (ii) Movies need villains. (iii) Movie searches are dull. (iv) Movies must move." Crichton argued that real science, with its long, drawn-out intellectual processes and frequent dead ends, simply can't be reconciled with such exigencies. "The problems lie with the limitations of film as a visual storytelling medium," he concluded. "You aren't going to beat it."
Crichton's words are worth heeding. People who care about science and want it to come off better in the mass media can't ignore his four rules of movie storytelling. They can't ask for entertainment products in which the characters do actual research (or at least not much of it). They can't ask for entertainment products that will be boring — a contradiction in terms. Rather, the goal must be to work toward finding ways of conveying information about science through film and other entertainment media without rendering them dull or unpalatable to audiences.
Now on to perhaps the most controversial part of Crichton's career: His attack on the science of global warming in "State of Fear." Crichton's views on climate science have been pilloried by leading experts, and exhaustively refuted; there's no need to retill that ground. But what's instructive is the very fact that an M.D., a polymath, and indeed a man possessed of vast talents could nevertheless pen a wholly misleading and revisionist attack on climate change research. How could he have gone so horribly wrong in this instance?
The answer is that whatever happened, it had nothing to do with stupidity or ignorance, and it is surely nothing that a better high school education would have prevented. Crichton, don't forget, was an M.D. He backed up his bestselling narratives with considerable scientific research himself, becoming, in a sense, an expert on each subject he tackled. It wasn't that he didn't know anything about climate change, but rather that he fell for various highly sophisticated — but still ultimately wrong — misinterpretations and misinformation. In this he was likely impelled either by political convictions, the desire to be a contrarian, or perhaps some combination of both.
What's true of Crichton is true of the country. Polling data from the Pew organization reveals something fairly stunning about global warming and public opinion: If you're a Republican, you are vastly less likely than a Democrat to accept the scientific consensus that global warming is brought about by human activities. You probably have a bias in favor of business and industry and don't believe factory or automotive emissions exacerbate global warming. But that's not all. The higher your level of education, the more skeptical you probably are that humans are to blame. Why? One possible reason is that more education makes you better at finding information and arguments that are supportive of what you already wanted to believe — as Crichton clearly did.
But the same thing can also be true of Democrats and liberals. Consider vaccination. An army of aggrieved parents nationwide, likely spurred in part by Robert F. Kennedy Jr., swears today that vaccines are the reason their children developed autism, and they seem virtually impossible to convince otherwise. Scientific research has soundly refuted this contention, but every time a new study on the subject comes out, the parents and their supporters have a "scientific" answer that allows them to retain their beliefs. They get their information from the Internet, from other parents of like mind, from a few non-mainstream researchers and doctors who continue to challenge the scientific consensus, and perhaps most of all — as was much the case with Crichton and global warming — from a group of celebrities, most prominently Jenny McCarthy and Jim Carrey, who have made a cause of championing such misinformation and almost assuredly deeply believe in it.
Yet the parents who listen to McCarthy and Carrey — rather than the CDC and the FDA and the National Academy of Sciences' Institute of Medicine — tend to be well-to-do and highly educated. Calling them "ignorant" is hardly accurate. After all, they've probably done far more independent research on a scientific topic that interests and affects them than most other Americans have. Like Crichton, they may be misusing their intelligence, but it's not as though they don't have any to begin with. Perhaps Mark Twain put it best: "The trouble with the world is not that people know too little, but that they know so many things that ain't so."
But if politics and culture, as much as educational deficiencies, are the reasons we live in a society that is so science-challenged, perhaps we must think differently about how to address this disturbing problem. "We" in this case would be not only scientists but also anyone else who cares about making important decisions, particularly political ones, based on evidence and future-oriented thinking of a sort that science can best impart.
To this end, we need to realize that it isn't wise — and usually isn't even accurate — to denounce members of the public, or filmmakers and entertainers and celebrities, for scientific ignorance and for constantly getting it wrong. Instead, we must find ways of talking to these people, becoming aware of the constraints they're working with, and try to help them see that science is no necessary enemy to the realities of filmmaking or what it takes to entertain an audience.
It is heartening, then, that in a major initiative, the U.S. scientific community has recently tried to connect with Hollywood on its own terms. The U.S. National Academy of Sciences, the elite membership society of American science, has just launched a project called the Science and Entertainment Exchange to "facilitate a valuable connection between the two communities." A permanent National Academies office has been opened in Los Angeles to "make introductions, schedule briefings, and arrange for consultations to anyone developing science-based entertainment content." This is a new initiative, so one cannot yet judge its impact, but early signs are promising — and it is precisely the sort of step the scientific world should be taking if it wants to heal its rifts with the entertainment industry.
As for dealing with rampant misinformation — refuting it is certainly important, but in the end this does only so much good if people have a powerful political or social reason to cling to their beliefs and if they have easily available arguments to throw in the face of scientific consensus. Denunciations from across an intellectual battlefield go only so far — the harder work involves talking to people, understanding the sources of their misconceptions, and figuring out how to move them to better ground. It won't be easy, even then, to change minds. Humans cling to beliefs ferociously, because they are a core part of our identities. But that itself is precisely why we have to understand what makes people tick, and figure out where the real blocks to accepting science are.
Above all we should remember, as recent survey data released by the Pew organization underscores, that nobody really hates science. Rather, like Crichton, they might be fascinated by it while having their own reasons for problematic departures. But they're still reachable, curious, intelligent. If we want a society that sees how science can save the world — instead of destroying it — that's who we should be talking to most.
Dear Cary,
I am a week shy of my 25th birthday, and I am back living in my parents' home. I have a degree from Harvard and a year of grad school under my belt, but lifelong depression and social phobia have crippled me such that I can't capitalize on my achievements. There's never been a problem getting good grades, but I've never been good at setting my own goals and following through with them. Only too late have I realized that one has to get good at something (besides passing tests) to be able to make a living. Everybody just assumed that because I was book-smart, I would be life-smart, and nobody pressured me to plan out what I wanted to do with my life.
I've also been so sheltered that I can't give directions to my own home, nor do I keep track of how much money there is in my bank account. Basically, I haven't had to learn the ins and outs of daily independent living and it's driving me insane, because I am 25 AND I HAVE A HARVARD DEGREE!
Since I've dropped out of graduate school I've made some attempts to get a job, but not wholeheartedly. I was fired from a fast-food job a couple of months ago, which has shot my confidence for getting a higher-paying, higher-status job. I'm scared to death of getting one, because I don't think I'll put in the effort to do well. I don't have to worry about paying the bills (my parents take care of it all) so there's no external motivation to get serious.
Besides my lack of ambition, I have trouble maintaining relationships. Never dated. Friends come in and out of my life, and I either get bored with them or I get so annoyed that they have ambitions and passions that I feel uncomfortable sticking it out. I have no loyalty to anyone and even my family says that I am duplicitous and hard to read.
I spend most of my days sleeping or surfing the Net, away from people, tuned out from the world. Whenever I try to tune back in, I feel self-conscious due to all that I've missed out on. This again makes it hard to connect with others -- what the hell can I talk about?
I know I'm smart, but I'm lazy, and am nowhere near to approaching my potential. The separation between my ability and my actions is driving me crazy and has brought on suicidal thoughts.
I wouldn't mind being isolated or having a low-status job if I were independent (not relying on parents). But "settling" for a "McJob" while under their roof seems to be the very example of slacking off because there's no pressure to do better, and I feel embarrassed doing that.
I know there's a way out of this -- maybe finding a different set of friends; a mentor; making a plan and not caring what other people think of it -- but getting out of bed to do it is the trick. I've even thought of running away to California (I studied film) but I don't know how the hell I'd survive.
Thanks for reading.
Stalled
Dear Stalled,
Now, I know that mental illness can cripple the smartest among us. But I also know that this can be dealt with in many ways. See a doctor or a therapist. It may be that you are one of those people who has what is called Asperger syndrome. If it's Asperger, there are ways to manage it. If it's depression, try cognitive therapy. Try anything. You have somehow been managing this all your life, functioning well enough to excel in high school, acquire a Harvard degree and do a year of graduate school. If you are experiencing a particularly difficult bout of it now, then with the help of a doctor or therapist attack it with fearless vigor. Fight these thoughts of helplessness and hopelessness with the facts: If you can graduate from Harvard, you can fill out an application for employment at Lion's Gate. And if you need certain things in order to function -- order, quiet, exercise, diet, then you have the resources to get those things.
Among those resources is courage. If you have come this far, you obviously have courage. Call upon it now.
And know this: It's as hard to escape your own privilege as it is to escape your own deprivation. Hell, if you hitchhike to California, they'll probably put a tracking device on you for insurance purposes. So at the risk of consigning you to the kind of chaos and uncertainty that I lived through in my 20s and early 30s, I say, what are you afraid of?
Unless you lack sufficient whiteness, you can hitchhike to California drenched in blood like a serial killer and some nice young person from Brown will give you a film job.
If you lack whiteness, it's going to be harder. You'll have to show your Harvard diploma.
When I set out in my 20s I understood very little but I understood this much: Any educated white person in America is privileged, and no one is going to allow us to starve. We can't even starve if we want to. People keep inviting us to dinner to talk about Robert Lowell.
We can try to starve ourselves but other white people will force-feed us like foie-gras geese. We can't escape out whiteness even in Tenderloin hotel rooms.
They send their gardeners looking for us.
We'll be smoking crack on the third floor and hear Spanish in the lobby. "Is that the voice of my mom's gardener?"
It's too much for their delicate constitutions to see their educated white children starving. It breaks their hearts. They must control us. They're like missionaries.
So don't worry about it. Your parents would rather pay all your bills and have you live at home and stay in your room than see you miss a meal or direct a grade-B zombie flick. Even if you come out here they'll send you money.
A note to parents: If you have a 25-year-old college graduate living at home, do that person a favor: Next time he or she leaves the house to "meet up with friends," gather up all his or her stuff, put it in the car with a $100 bill and have a locksmith change the locks on the house. (Chances are you don't know how to change a lock yourself, right?)
And if you're 25 and sitting in the bedroom of your parents' house, hear this: We need you! The planet is melting down. Get out of your goddamned houses and change the world. There's work to be done.
If you must fear something, fear dying without living.
What? You want more advice?
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.
On Feb. 14 I awaken to this headline: "Professor Beaten to Death by Autistic Son."
I scan the story while standing, my coffee forgotten. Trudy Steuernagel, a faculty member in political science at Kent State, has been murdered and her 18-year-old son, Sky, has been arrested and charged with the crime, though he is profoundly disabled and can neither speak nor understand. Sky, who likes cartoons and chicken nuggets, apparently lost control and beat his mother into a coma. He was sitting in jail when she died.
This happens to be two days after my older son's 21st birthday, which we marked behind two sets of locked steel doors. I'm exhausted and hopeless and vaguely hung over because Andrew, who has autism, also has evolved from sweet, dreamy boy to something like a golem: bitter, rampaging, full of rage. It happened no matter how fiercely I loved him or how many therapies I employed.
Now, reading about this Ohio mother, there is a moment of slithering nausea and panic followed immediately by a sense of guilty relief.
I am not alone.
- - - - - - - - - - - -
Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ.
We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level -- from ages 12 to 17. Andrew aced algebra, became fluent in Spanish, played the cello in the school orchestra, and competed on weekends in tournament chess. I occasionally even referred to him as "cured."
But in the months before turning 18, Andrew grew depressed and bitter. Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4. Many of his old symptoms returned: the rocking and "stimming" (e.g., blinking rapidly at lights), the compulsion to empty bottles of liquid soap. Sometimes he would freeze, like a statue. Classic catatonia, the experts told us. We tried a series of medications, but that only made him worse.
Once during this phase, he beat me. A neighbor heard me screaming and called 911. But I blamed this on the drugs. Despite everything, my son had always been gentle and sweet. This was no twisted adolescent squirrel killer who kept a pile of carcasses under his bed.
On the day he should have graduated from high school, Andrew was instead being treated in a psychiatric ward at the Mayo Clinic. But he seemed to improve, and we were hopeful. Upon release, he was placed in a series of behavioral health centers and group homes. This is where his real education began.
He'd quit progressing in school, but now my son soaked up new information like a toddler learning to talk. Every placement in a succeedingly tougher environment gave him new skills. He shoplifted like a pro, traded his belongings for sexual favors, and dined and dashed so often some local restaurants had his picture posted in their kitchen under the words, "Don't serve this man." I told myself at least he was thinking, making his own bad choices, experiencing adult consequences. A part of me was even proud.
But he'd also quit reading, conversing, learning people's names, or keeping track of the day of the week. He ate like some gnashing beast: stuffing food into his mouth until his cheeks bulged and food dribbled out onto his clothes. And after moving to the rural group home selected by a judge because it was miles from restaurants or businesses where he could steal, Andrew morphed again, the warty monster from a Grimm fairy tale, demolishing everything in his path.
His destruction was utterly senseless yet brilliantly thorough: He submerged his computer, stereo and iPod in water; threw puzzle pieces and Styrofoam cups into the toilet and flushed them, plugging the pipes literally dozens of times a week; and urinated on every square inch of his room: bed, walls, floor, closet, everything but the ceiling and that only because he had not (yet, I suspect) figured out how.
When I asked him why he did these things he would say, eyes narrow like a night creature, "I don't like being caged."
- - - - - - - - - - - -
Then came Sept. 2, last fall. This was to be Andrew's first day of his final year in public school. He hated school -- a so-called transition program -- because it was demeaning. Lessons about how to cross streets and take buses and punch time clocks. My son had completed pre-calculus; now he was being taught how to make correct change.
But there was nowhere else for him. He'd failed to hold the two jobs my husband and I had found for him; the private job coach we hired said Andrew was the most challenging client he'd ever worked with -- right before he quit. We were financially tapped out and the state would not pay for vocational training until Andrew turned 21. Transition school was the only choice.
I'd explained all this. But when I showed up at the group home that morning, he was drinking coffee and pacing and still not dressed. I went into his room, took some clothes from the closet, handed them to him. And hinting at what he was about to do only with a small sigh, as if to say, "I've had enough," my son picked me up and threw me across the room.
I had three broken ribs and a bit of damage to my liver that made my doctor fret. Still, who among us hasn't wanted to toss our mother across the room when she's nattering on and making cheerful sounds in the morning? I dismissed it as an aberration until a couple weeks later when Andrew decked his elderly tutor, knocking her onto a concrete sidewalk and breaking her hand. He went on to attack several staff members at the group home, grope the mentally handicapped young women who attended his transition program, and finally to accost his 14-year-old sister right in front of my eyes.
It was Christmas Day. I watched him enter the room and fix his gaze on my daughter. Then he rushed her, and I screamed. My husband -- two inches shorter and 50 pounds lighter -- somehow intercepted Andrew and knocked him to the ground. After he had been escorted from our family dinner in restraints, we sat at a table heaped with food growing cold, where my elderly parents wept and my daughter shook silently. I comforted them all and after that was done -- the meal reheated and people eating -- I drank every drop of alcohol in sight, even draining the half-full wine glass my mother always left. The next morning, through a headache of steel knives and bad music, I got on the phone.
I called the man who was supposed to be my son's psychiatrist to ask for an emergency appointment. Andrew was becoming dangerous, I told the nurse, and he was going to hurt someone. But the doctor was too busy; he was on vacation. There might be an opening in late January. No one else was available, no matter how many numbers I dialed.
Secretly, as if committing a sacrilege, I searched online using keywords such as "autism" and "violence" and "murder." What I found was confusing. There were roughly a dozen recent articles about heinous acts committed by people with autism and Asperger's syndrome, but each was followed by editorials and letters written by autism advocates vigorously denying a link. There were a few studies from the '80s and '90s, but the results -- when they showed a higher rate of violent crime among people with autism -- appeared to have been quieted or dismissed.
On the other hand there were, literally, thousands of heartwarming stories about autism. A couple of the most widely read were written by me. For years I had been telling my son's story, insisting that autism is beautiful, mysterious, perhaps even evolutionarily necessary. Denying that it can also be a wild, ravaging madness, a disease of the mind and soul. It was my trademark as an essayist, but also my profound belief.
Now, despite the constant calling and late-night research, I could not accept what was happening. I could not write about it; I could not speak of it. Not even my closest friends knew what was happening inside my life.
- - - - - - - - - - - -
My husband and I were on our way to an inauguration party the night Andrew finally came apart.
It was January, a week of cold so wicked I was dressed in long underwear and wool sweaters, scarves, a parka, and two sets of gloves. It took me a long time to scramble through all the layers when my cellphone rang. But missing the call was not an option. I'd already had four panicked messages from the group home that day: Andrew's violence was escalating. They were mandated by state law to stay inside because of the weather, and he was going stir crazy, terrorizing the house. No one knew what to do.
"Yes?" I answered.
"I'm so sorry," is how the voice on the other end began.
It was Andrew's counselor, calling to describe the situation. My son was in an ambulance circling the Twin Cities, sedated and strapped down to a bed. He'd been in there for a couple of hours and the medics just kept driving; they couldn't stop because all the psych wards were full.
"Yes," I croaked again. Other than this one low word, I'd been struck mute.
They'd had no choice but to call the police, the counselor said. After dinner -- which was served in the group home at 5 o'clock, leaving long hours to kill before bed -- Andrew made a pass at a young female staff member. Petite, blond, around his age. The girl rebuffed him, reminding him probably for the 8,000th time that day about the "no touching" rule. And then he went off.
My son reportedly leapt on her -- his 260-pound body surprisingly nimble -- one hand around her throat, choking her, and the other in her mouth, pressing down, cutting off her air two different ways. It took four men to pull him off and by this time the girl had passed out.
"Is she all right?" I asked. And this mattered for so many reasons: There was the basic human one, then the legal, also the fact that my own fate hung on the answer. While lying awake earlier that week, I'd made the decision that if my own child were to kill someone I, too, would have to die.
"She's bruised," he said, "and scared."
That's when I breathed. Nothing irreversibly evil had yet been done.
My husband wanted to turn around. But I was afraid that in the quiet of our home I might sit and think about my perfect, rosy-cheeked baby and actually go insane. So instead we went to the party and, as on Christmas, I drank as if it were a task I need to accomplish. Steadily, with steel. While my husband watched over me with his worried face, I hugged people and talked and tried to participate in a game the host had devised: Obama trivia. What movie did he take Michelle to see on their first date? Which brand of computer does he use? How big are his feet?
I failed to answer a single question and wondered why everyone around me seemed to know these things. Where had I been? Through my shimmering stupor, I surveyed the crowd of happy, shining faces. People were wearing buttons, T-shirts, even necklaces that spelled out "hope." This struck me as sinister and somewhat rude. Hope was bullshit. Hope was exactly what had been lost.
In the car on the way home, I asked my husband if I had fooled everyone at the party. Was I speaking normally? Did I at any point shout or cry or whimper? He assured me I had not. But for the few moments at the end when I'd looked as if I might collapse, I'd been pale but appropriate.
"I'm sure I'm the only one who knew," he said, shifting so the seat made its cold, leather groan and taking my hand.
I thanked him and leaned back, thinking dumbly that, of course, there was one thing he didn't know: I'd been secretly stockpiling the sleeping pills my doctor prescribes like Pez. I had about 80 saved up, which would probably be enough. The ambulance was still out there, driving through the dark night on frosted roads, holding my son inside. For now I could live. But the following morning I recounted my supply, just in case.
- - - - - - - - - - - -
Back when Andrew was in junior high school, my mother had a friend whose adult son had only recently been diagnosed with autism. He'd been dysfunctional since childhood, failing at school, unable to make a friend or keep a decent job. At 35 he was still living at home, collecting carts at the local grocery store, and taking anticonvulsants (Tegretol was the unofficial treatment of that era for outbursts) to control the violent urges he'd been having for 15 years.
"You think he's better now," my mother's friend once said as we watched a young, laughing Andrew out the window, playing tag with his brother and sister in my parents' backyard. "But wait 'til he's older. Then you'll understand. "
I hated her and was furious that she wished for our downfall -- also that her dumb, psychopathic son had been given the same label as my beloved child. Autism had become oddly fashionable; my mother's friend was wealthy. Clearly she'd gone "diagnosis shopping." My son, I vowed, would be nothing like hers.
When Andrew finally landed at the county hospital, after 10 hours in the circling ambulance and another three in the E.R., I was still looking for a different answer. This wasn't autism. Surely he had a brain tumor, a seizure disorder, or a delusional condition such as schizophrenia. Maybe, on one of his crime sprees, he'd gotten ahold of some PCP.
But the psychiatrist assigned to my son said no. The MRI was clean; the EEG normal. The doctor's specialty happened to be schizophrenia, and he saw none of the signs. Street drugs would have left Andrew's body by now. This was isolation, frustration, hormonal surges, poor impulse control and hopelessness. It was adult autism, the psychiatrist told me: one awful direction it can take.
Monday, I went to see my son. He was in a bare white cell behind a steel door with a window, like Hannibal Lecter. The only thing missing was the mask. Two male nurses and Max, my 18-year-old linebacker son, walked with me into the room. Andrew was beached on a bed, his glasses the only thing on the shelf alongside. I touched his shoulder and woke him, taking his hands after he'd lifted himself to sit. "I'm here, sweetheart," I told him. "I want to help."
He looked at me with bug-eyed wonder and squeezed my hands, hard, "I might kill you," he said. That's when Max pushed his way between us and ordered me from the room. Sobbing, he wrestled his brother to the bed and held him there.
I spent Tuesday at a friend's house, as planned, in front of the TV, watching the Obamas walk and wave. Once, when someone asked why I was so quiet, I mentioned that one of my children was in the hospital, quite ill. She touched me and said something kind. I knew she was thinking of something like leukemia and I wanted to tell her I would hack off my right arm in return for something as simple as cancer. The flickering beauty of a sad, pure, too-early death sounds lovely. Instead I nodded, silent and dumb.
The one thing I held onto, through all of this, was the sudden appearance of this county psychiatrist: a small, bespectacled, Dustin Hoffman-ish fellow who’d spent years on a kibbutz before going to medical school in middle age. I found him magnetic, I trusted him. He became my talisman, my Obama, the only reason to hope. It wasn't that he had any magic solutions -- I've learned by now that no one does -- but he was openly upset, diagnosing Andrew simply as "someone in pain."
We sat in the doctor's lounge and he gave me a slice of banana bread to eat while he kneaded his forehead and read his notes. When he asked me what I wanted him to do, I told him: Whatever it takes to make my son stop. The threat of harm to my son's body was superseded by black stains on his soul. The doctor agreed, but he had made a list in ascending order of risk: Ativan, high-dose Prozac, Depakote, electroshock, Clozaril, Riluzole. A drug called Lupron.
I reached for my single semester of Latin. "Lupron? You want to take the werewolf out of him?"
"Exactly," said the Israeli. "But it's our last resort."
There were days spent in court, one swimming into the next, like a series of nightmares. Because my son was vulnerable, nothing could be done without a judge's order. Exhausted after this process, my husband and I went to Chicago and spent three days walking in icy sunlight, eating in no-name diners, going to sleep at 9 p.m. By the time we returned, Andrew had been given buckets full of dangerous, doping drugs and two sessions of ECT.
When we arrived at the hospital, he shuffled sleepily out of his now-unlocked room. We gave him money to order pizza (it turns out Domino's delivers to the psych ward), a sketchbook and pastels, two books. He could have nothing sharp, no cords. This ruled out a CD player, laptop, or ballpoint pen.
I asked tentatively if he remembered what he had done and suddenly he began to cry, tears running down his giant, furry face, jeweling his beard.
"Beware," he said through ragged breaths. "I'm bad now, I can feel it. I can't help the things I do."
- - - - - - - - - - - -
Whether there is a definitive link between autism and violence -- between Trudy Steuernagel's situation and mine -- I cannot say.
And even if it exists, the cause is not clear. Our adult son's behavior could be the outcome of living daily in a world where everything hurts and nothing makes sense. It could be the result (as some scientists have postulated) of excess testosterone on the autistic brain. It could simply be wild coincidence that I ran across this particular story during a time when I was looking for answers. Any of these is possible. I just don't know.
The chairman of Trudy Steuernagel's department rose at her memorial service to proclaim, "Autism doesn't equal violence." And this probably is mathematically correct: Autism does not always equal violence. But I do believe there may be a tragic, blameless relationship. Neither Sky nor Andrew means to be murderous -- of this I am sure -- but their circumstances, neurology, size and age combine to create the perfect storm.
It is warmer, finally. Outside my window ice is melting off skeletal trees. I sit in the pale morning light, drinking tepid coffee and reading about this woman whom I suspect I would have liked. A fellow academic and writer, Steuernagel, too, insisted on finding beauty in autism. Her legacy includes an editorial about Sky's loving nature and relevance, how he led her through life along "a trail of sparkles."
Mine, I decide, must be in part to break the silence about autism's darker side. We cannot solve this problem by hiding it, the way handicapped children themselves used to be tucked away in cellars. In order to help the young men who endure this rage, someone has to be willing to tell the truth.
So here it is.
Health and medicine got a big headline last week: "Vaccines Didn't Cause Autism, Court Rules." The details have been extensively discussed, but here's the gist of the story: Three special federal judges working for the government's Vaccine Injury Compensation Program issued three separate decisions in what's become known as the Autism Omnibus Trial. The trial is a class-action lawsuit in which almost 5,500 families have sued the government, claiming routine childhood vaccines caused their children to develop autism. Last Thursday, each judge, known as a special master, reviewed the claim of one family, and in each case, ruled against it. Physicians praised the decisions, calling it great day for children and science. Anti-vaccination activists declared it unjust, wrong and unfair.
Among those expressing shock and disappointment was Rebecca Estepp, the mother of an autistic child, who is one of the claimants and the national manager of the advocacy group Talk About Curing Autism. "It's tough when you're taking parent support calls and you hear the same story day after day," she told the Wall Street Journal. "When does anecdotal evidence become enough?"
Her question isn't a new one, especially in a society where belief, emotion and science so often conflict. For scientists, the answer to Estepp's question is never. Developing a hypothesis from anecdotes or observations (whether one or a hundred of them) is merely the first step in a longer process. Next comes the hard part: testing that hypothesis to see if you can back it up with hard data, and then sharing the data with others to see if they can reproduce the findings, often multiple times.
Observe. Test. Repeat ad nauseam. That, in a nutshell, is the scientific method. It's a rigorous and disciplined way of thinking. The outcome holds promise because hard data remains the most objective measure we have, providing us the closest thing to that ideal called truth.
That said, we've never been a society with a worldview that holds science in high esteem. Consider the results of a recent Gallup Poll about evolution: On Charles Darwin's 200th birthday, only four in 10 Americans say they believe in the theory of evolution. As a result, from the Scopes Monkey Trial to Kitzmiller et al. v. Dover Area School District, we’ve sent conflicts between faith and science to the courts to arbitrate.
In the case of autism and vaccines, we've made the same decision. The debate has aroused intense feelings: On one side are physicians and medical groups, convinced that vaccines are safe and effective, perhaps the most lifesaving breakthrough in medical history. On the other side are parents, like Estepp, who struggle every day to raise a child with autism. Painfully watching their children become autistic after receiving vaccines is their lasting proof. It's the answer when doctors and medicine can't answer why. For them, the emotion of the issue can't be quieted by science's hypotheses.
Where is the burden of proof greater? Scientific investigation achieves objectivity by demanding that gut feelings be verified with experimentation and data. Compare this with jurisprudence, where people weigh the evidence and make it subject to all the biases and flaws of human nature. If you don't buy that, try serving on a jury of your peers. At the other end of the spectrum, consider how DNA testing has revolutionized criminal and family law.
Now, read that headline again: "Vaccines Didn't Cause Autism, Court Rules." It doesn't say, "Vaccines Didn't Cause Autism, a Decade's Worth of Rigorously Conducted and Verified Medical Research Rules." That may not be as sexy as the recent headline, but it is the truth. The scientific community disproved the vaccine-autism connection long ago, multiple times. Anti-vaccination crusaders have countered with science of their own, but it has been weak at best and probably fraudulent at worst -- a fact the vaccine court recognized in its decisions.
In the vaccine court case of Michelle Cedillo, heard in 2007, the special master George L. Hastings commented on the anti-vaccination side's medical experts: "I have no doubt that the Cedillo parents and relatives are sincere in their belief that the MMR [measles, mumps and rubella] vaccine played a role in causing Michelle's devastating disorders. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment."
While it's easy to blame the bad science of the anti-vaccination community, it's not enough. Legitimate scientists must own up to the controversy and learn to communicate better. Too often they use guarded, often complicated language, reflective of their skeptical and cautious perspective. Take this comment from the CDC in 2007: "The vast majority of science to date does not support an association between … vaccines and autism. But we are currently conducting additional studies to further determine what role, if any … in vaccines may play in the development of autism."
Meek statements like that lose out to fiery emotion every time. In this instance, the statement was read by Oprah Winfrey on her show in 2007. That day, Jenny McCarthy was her guest, sharing emotional and frightening anecdotes about her son developing autism after his immunizations. After the show, the score was Jenny 1, Science 0. As doctors and scientists, we all have a lot to do to make our messages stick. By communicating with conviction and compassion, we can only benefit our patients.
In the case of autism, science and reason have too often failed to reach people. And consequently they have turned to the courts. For those of us who believe in the scientific method, the autism trials have not been necessary. But judges, unlike doctors in their cold white coats, still command a great deal of respect, and so perhaps the court's recent ruling will sink in and finally persuade parents to regain their confidence in vaccines. If so, the end will have justified the means.
Asperger's: Hollywood's new black?
If there's a problem with the way American movies depict people with Asperger's syndrome and other autism-spectrum disorders, it certainly doesn't stem from a lack of sympathy or from bad intentions.
By Andrew O'Hehir, Salon
Planet autism
Last summer, a man in California shot his 27-year-old autistic son to death and then shot himself. I understand why.
By Scot Sea, Salon
Deadly immunity
When a study revealed that mercury in childhood vaccines may have caused autism in thousands of kids, the government rushed to conceal the data -- and to prevent parents from suing drug companies for their role in the epidemic.
By Robert F. Kennedy Jr., Salon
The body electric
Our son's condition kept getting worse, and everything we tried to help him failed. Then we discovered there was one final option: Electroshock therapy.
By Ann Bauer, Salon
The CDC guide to autism
This encyclopedic guide to the condition includes benchmarks for identifying autism early.
Not Even Wrong: Adventures in Autism
By the age of two, Collins' son, Morgan, could read and multiply but would not respond to his own name. Soon after, he was diagnosed with autism. In this memoir/study, Collins explores the history of autistics such as Peter the Wild Boy, a nearly mute feral child discovered in the Black Forest in 1725, in order to better understand his own son.
By Paul Collins