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Photograph by David Torrence
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Sarah Johnson, a Washington University psychology undergrad with an angel's patience, climbs onto the just-arrived school bus and emerges holding 9-year-old Mia's hand. Mia waves bye at the bus and skips up the sidewalk, pink sneakers matching pink quilted vest and pink backpack. Her dad, who's working at the family's University City home today, is waiting at the door. "Hi!" Brad Nuccio says. "You're hap-py!" He touches her cheek and stares into her face, delighted—not because this mood is unusual, but because he draws daily joy from it.
Johnson and Mia go inside; Nuccio stays on the front porch, door ajar, saying goodbye to a neighbor who's just leaving. Johnson shuts the door firmly. "Too many people." She turns to distracted Mia. "Take off your backpack. Good job! Take off your vest. Good job! Go get your hanger. Good job! Now you have to hang it up."
When the homecoming ritual is complete, they walk through a high-ceilinged room outlined in dark wood molding and filled with big, unframed canvases. In the kitchen, after more instructions, Mia produces her lunchbox. When Johnson tries to direct Mia's small hands, frustration tenses every muscle, but two seconds later the mood flits away, fickle as a butterfly. Mia does not have tantrums, does not insist on her own way. Is perhaps not sure what her own way is.
Reminded, she carefully stuffs her socks in her shoes, delicate as a surgeon. Making conversation, Johnson says she's wearing flip-flops today. The sound of the word seems to tickle Mia; she's staring straight ahead, not at Johnson, but she bursts out laughing. Johnson has her sign "want drink" (wordless, she's learned a bit of American Sign Language) and pours juice. Mia gulps it and bolts for the door to the back yard. This happens a lot, these sudden sprints, and Johnson catches her every time by the shoulders, slowing her down. "Put your cup in the sink, Mia." It bangs into the deep stainless-steel sink from high above. "Good job!" They go upstairs to check Mia's diaper, and as they leave the bathroom, Johnson rehooks the discreet latch high on the outside of the door. Every door has one, keeping Mia's wild energy on a supervisable path. You wouldn't see the latches unless you're looking for them, though—any more than you'd see the Liquid Nails that holds pictures in place, the silicon that seals windows shut and floor registers in place, or the magnetic cabinet locks.
"Wanna play for a second?" Johnson asks. They go into Mia's room, and Johnson picks her up and flops her onto a pink beanbag, then tosses a pillow gently on top of her. She giggles contagiously, scrambles up, flops on her bed with another squeaky giggle. "At first I was very delicate with her," Johnson says. "Her mom said, 'Nah, she doesn't respond to that.' So we throw her around!"
Singing the same note again and again, like a soprano doing voice exercises, Mia climbs up the high, cabinet-like bed frame. Agile and fast as a cat, she is unusually graceful, and unlike many kids with autism, she craves flying and spinning, noise and bright lights, sensory overload.
"OK, let's go sort some silverware," Johnson says. She keeps hold of Mia's hand throughout the exercise, which, like the careful homecoming ritual, is part of the "environmental applied behavioral analysis" therapy they've been doing for six months now. "Now she can feed herself without prompting," Johnson announces. "And she can drink out of a real cup, not a sippy cup." She pauses. "I feel, sometimes, like autism is an attention problem with her brain. Half motivation, half attention. You just have to get her to focus long enough, and then she can do anything you want her to do."
Tanner Craft, age 10, sits on the living-room sofa of his family's Kirkwood home, head down, taciturn.
"I'm a reporter with—"
"Yeah, they told me that," he interjects, dismissive as a CEO waving away an underling. He is stiffly polite when he answers questions, but he clearly doesn't want to do this. Finally, scrambling for a connection, I suggest he show me one of his video games.
"Yesssssssssssssss!" He runs to his room, plops into a chair and starts working the remote's buttons furiously.
"How do you do that so fast?" I ask.
"I just have to get used to it. I just have to memorize where each button is. Axelhuggle 3000. He's pure evil. On second thought I'll go to Bikini Bottom. It's where SpongeBob SquarePants lives. Check out my hyper-robot. He's disguised as a dog. See? I'm just fighting with my own guys." He laughs hard. "I don't know why they allow you to do that, but it sure is funny. See what I just picked up? It's a goo thrower. A goo thrower. Why am I repeating it? A goo thrower. Yeah, gross. I don't really like goo so I try to waste it. I'm a stupid robot."
"Tanner!" rings from the next room.
"I said a bad word," he confides. (His mother told me earlier, wincing, that he will sometimes say, "I'm stupid. I'm stupid," and hit himself. Apparently "stupid" is now verboten.)
"I land on a nice hard cement trampoline." He giggles. "I just like to say that. Hit me. Hit me. Hit me. It doesn't hurt at all." Kids with autism often have decreased pain sensitivity, I remember suddenly. But he's in his world, not mine. "Watch! I just keep running. I call it a blowy tunnel. You want a piece of me? Hey, I can give you a piece of me, just let me take my costume off. I'll break myself apart for you.
"Watch!" he says suddenly, a royal imperative, then surprises me by handing me his earphones. "Here, put these on. The music's cool." Without the earphones, he recites the script, perfectly in sync, inflection exact. He ignores questions when he's absorbed; answers them graciously in between the action. In a rare lull, I ask him to show me his favorite thing in his room.
"I do not know of your question. Could you be more suspific?" He waves his feet. "Don't worry, watch and learn, and everything will be good as new." His creature suddenly in danger, he screams, "Mommy! Mommy!"
"Is this like school?" I ask casually, watching the tortures unfold on the screen.
"These are toys," he informs me scathingly. From the other room, his mom's voice comes again: "Do you like school, Tanner?"
"Not really. Now watch what happens at school. The ghost gets blown up. Mommy! There. They all lived happily."
"Happily ever after?" I ask hopefully.
"No, happily blowy after. Because blowing stuff up is very nutritious."
He stops the game.
"Happily blowy after," I murmur.
He laughs loudly. "Now you said it!" Thrilled by this fleeting connection, I grin.
"Now," he says, "it's less funny."
"There is no more profound mental disorder than autism; it's been termed the most fundamental of all psychiatric conditions," says child psychiatrist John N. Constantino, Washington University's foremost expert on the subject. "Kids with autism look OK; often they think OK; there are no brain lesions you can point to as causes; yet behavior is profoundly affected. And that is the essence of a mental disorder."
The newly popular acronym ASD—"autism spectrum disorders"—hints at the condition's complexity and infinite variations. Autism is a biological disorder that's linked to specific brain abnormalities, and it shows up under many guises, from mild to severe, with a huge array of possible symptoms and coexisting problems.
Across that spectrum, there's some consistency: Kids with autism or related disorders have problems paying attention, communicating, interacting socially, interpreting and considering others' feelings, modulating their own feelings. They insist on sameness, relate better to objects than people, can be both physically and emotionally awkward, crave some repetitive sensations but can easily feel barraged by noise, bright or flickering lights, even human touch. Their interests are narrow and intense, and there's a fundamental disconnect that forces them into constant negotiations with the world around them. It's easy to fall into the old clichéd assumption: "Each autistic child is trapped in his own world." Or maybe, as one mother I spoke to speculated, there's a single world to which they all go—a world they prefer to ours and sneak back to whenever we let them.
Ten years ago, autism was reported as affecting one child in 10,000; today it's one in 150, according to the Centers for Disease Control and Prevention, with boys four times as likely to be diagnosed as girls. So is autism growing as fast as the statistics suggest—and activist parents insist?
Constantino says there's no question the numbers are up, but it's not clear that they represent a higher percentage of children: "We recognize symptoms more readily," he points out. "We cast a wider net. And as diagnoses of autism have risen, diagnoses of mental retardation have dropped."
"The thing that blows that argument," remarks Mia's mother, Amy Gwin, "is that the schools are totally overburdened. By any label, those kids would have put the same strain on the system years ago. But it's worse."
While researchers explore causes, parents struggle to change the world—at least, modify it enough that their child can survive its rapid pace, fluidity and sensory assaults. Then they do something even harder: struggle against their instinctive need for their child to love them back. Because the "I love you, Mommy" and "Thank you, Daddy" and "I'm sorry!" that smooth the trials of parenting … don't usually get said.
"Autism threatens the aspect of humanity which most of us value above all else: our ability to emotionally connect with another human being," Constantino says. The conventional assumption is that kids with autism are incapable of empathy or even sympathy, don't feel connected to other human beings and don't really "love"—but he's not convinced.
"I don't see where we can actually know that," Constantino says. "We know autistic children attach to their primary caregivers; they use that person as a source of comfort when they are stressed and as a secure base from which to explore the world."
Love's more than attachment, though: It usually carries a sense of altruism, of willing self-sacrifice and abiding concern. In Constantino's opinion, we won't know whether autistic children are capable of altruism until we can climb inside their heads. "The way they see the world and assign relevance to variables and circumstances is entirely different," he says. "We are just making assumptions of what they are thinking based on what they are doing—and that behavior is occurring through the lens of being autistic."
Gwin says, "People think, 'Oh, how sad to have a child never want your love.' But she wants our attention all the time." I notice the word change but let it pass. "She doesn't particularly respond to affection that we initiate—but we still hug her! Her favorite thing is being tucked into bed, so we will do that five or six times a night. She wants you to put the covers over her, and she squeals, and then she wants you to lie down with her. The other night—God! Brad was out of town, so I took her into Max's room so I could read a bedtime story, and when it was time to go to sleep, she crawled into bed between us, and we lay there with our arms around each other." Gwin says she held her breath, thinking, "Oh my God, I can't believe she's doing this!"
Tanya Craft, co-chair of this year's Walk Now for Autism and a regular volunteer for the Autism Speaks support organization, flops into a seat at Saint Louis Bread Company. Her son, Tanner, is in a regular elementary school in Kirkwood, but with a "shadow" to help him. The setup's great, but not perfect. "Once I was there reading to the kids, and I could hear him screaming all the way down the hall," she sighs. "Little itty-bitty things will trigger him off; a fire drill rocks his world. He never gets invited to birthday parties or play dates, and he's asked me why. The custodian at school, this real relaxed black guy, will come and sit with him at lunch, so he's not alone. But it's so difficult for Tanner to share—even playing a board game is a mess. People think he doesn't want to interact. He wants it; he just doesn't know how to get it.
"Tanner does very well with facts, anything concrete and literal—math, history," she continues. "But he agitates so easily, and he comes across as rude because of his tone of voice when you interrupt him. He has squeezed his teachers, hit his teachers. You worry he is going to get suspended, and it's a strain on your family." For parents of children with autism, she adds, "The divorce rate's 80 to 85 percent, because you are constantly battling. My husband's quicker to yell at Tanner, so I'll be mad at him for yelling at Tanner. 'Cause it's never easy. You never can just have a day where there's not a meltdown or go out to dinner without people staring."
Her cellphone rings. "Oh, it's school," she says, instant panic in her voice. "School calls all the time: 'Come pick him up' or 'Calm him down.' I was almost late this morning because he was having a meltdown.
"Hel-lo? Oh, hey, Tanner! You OK? What? You're not really OK? The hat I got you is way too big?" She murmurs an aside—"It's hat day at school"—then returns to the conversation. "When Mommy's done here, she can go by home and get you another hat, but it won't be till lunch. The Steve Klein one? Yes, I can make sure it's the messy one, but it won't be till later, do you understand that it won't be for a while still? How did art go after I left? You got your yarn figured out? Yeah, you can please hang up. You called me!"
She closes the phone and lets out a breath of relief. "That was where everything went wrong this morning. I forgot that it was hat day. I had come back to bring him a hat, and I heard him screaming. I said, 'Look, Tanner, I got you a hat.' Tears. 'That's not the one I said I wanted!'"
Tanner has both a medical and an educational diagnosis. If he didn't, he wouldn't get services at school—occupational therapy, speech therapy, applied behavioral analysis. Parents have traded homes for apartments or moved in with their parents just to get into the right school district. Even then it's hard. Craft works at a 7-Eleven, and she and her husband scrimp to make ends meet. Gwin and Nuccio have more financial resources, but they can't be with Mia nonstop to make sure she's getting what she needs.
"This is one of the difficulties of having a child with severe disabilities," Gwin says. "You have to trust a lot of people to care as much as you do, and in your heart, you know they can't possibly."
Scientists aren't even sure where the walls are: Maybe kids with autism have trouble recognizing social cues—or maybe they pick up on the cues but can't interpret them—or maybe they understand but just don't know how to respond. Of late, researchers have been studying the mirror neurons in the brain that echo someone else's experience until we feel it, too. Are those mirror neurons somehow dulled or tangled by autism?
We do know, from neurobiological tests of kids with autism spectrum disorders, that "there are unusual ways information gets processed at a very fundamental level of the brain," Constantino says. Facial expressions, gestures and body contact can be confusing, even frightening. Most of us look into someone's eyes to figure out what they're feeling; kids with autism do not. Some recoil from eye contact; others simply don't bother with it. Many will shy away from being touched (a spontaneous hug is unpredictable and therefore invasive), yet spend hours stroking and touching objects, soothed by the repetition and familiarity. Objects are easier for them to fathom than people, so they might fixate on a certain object and cling to it.
They also take things literally, which can make them seem humorless. "Tanner will read joke books and come tell us a joke," Craft says, "and we'll laugh, so he'll start laughing hysterically, and then he'll say, 'I don't know what that means.'"
Kids with autism think concretely; their world will crumble before it bends. "In some ways you can think of concreteness as the absence of emotional richness," Constantino says. For many children with autism, the intellect's their strong suit: "Concreteness is just the overreliance on that."
When Tanner's school schedule got thrown off kilter by snow days, the sequence of P.E., music, P.E., art changing to P.E., music, P.E., music again, he burst, "No! It can't be! It's impossible! It's not what it was supposed to be." What followed was one of the worst tantrums in recent months.
Kids with autism desperately need life to be linear, one thing at a time, neatly ordered and compartmentalized. Too much chaos can trigger hysterical tantrums—but the real chaos is inside the brain. Scans reveal that these kids can't synchronize activity in different parts of the brain, harnessing them together for complex social behaviors. When we read a sentence, for example, one part of the brain decodes individual words while another part puts their meaning together. "In typically developing individuals, those parts of the brain are nicely attuned and firing together," Constantino says, "but in individuals with autism, they're out of sync."
What we do know, Constantino says, is that there are multiple causes for autistic syndromes. "Right now we are up to about 15 known genetic abnormalities"—yet they account for only 10 to 20 percent of the cases. "There is also one environmental pathway we know: severe psychosocial deprivation. The unfortunate example is the Romanian orphans. But those kids, even when adopted after age 4, got better. Not all the way better, but much better than a 4-year-old with autism gets."
He brings up other possible environmental causes, placing a foot carefully on the slick, narrow balance beam that stretches between scientists and activist parents. "There are anecdotal reports of autism being triggered by environmental events, like vaccinations. But they are not sufficient to assign causality."
When Barack Obama made the same point, he infuriated potential voters—even though he was urging further study of vaccines. Autism's a political minefield. Last year, more than 4,000 families filed claims alleging that vaccines cause autism, and scientists countered that thimerosol, the mercury-containing preservative, was removed from vaccines six years ago. Yet the number of cases continues to grow.
In retrospect, Gwin's sure Mia had her first seizure right after her first vaccination. So when her baby brother, Max, turned 4, and Gwin took him to the pediatrician and learned they'd scheduled him for six shots, she put her foot down. "Who have you been talking to?" her pediatrician asked wearily.
"There's a huge chasm between what families are experiencing and learning on their own and where doctors are," Gwin remarks. Some parents try chelation therapy, in the belief that their kids can't flush heavy metals from their system and the toxicity builds up. Others focus on weak immune systems or on diet, eliminating gluten (found in grains) and casein (in dairy) because their kids don't seem to break these ingredients down properly. Gwin cooks Mia's food for the week every Sunday—no wheat, no dairy—and gives her vitamin injections. The one time she tried wheat again, Mia had a severe cold and diarrhea for seven of the eight weeks of the experiment.
"We finally realized we are practicing medicine," Gwin says. "You hear about something and think, 'I could try that,' and you do, and then you talk to your pediatrician, who says, 'Oh, that's so silly.' All I know is, every time Mia eats wheat or drinks milk, she gets very sick."
"Some kids with autism do seem to have a lot of GI problems," Constantino concedes. "Whether it's related or a cause or a total coincidence, we don't know. But some have what we call 'a leaky gut'—water gets transferred across the membranes and produces diarrhea and discomfort. Or certain foods don't get digested properly. Or there's an inflammatory process, and parts of the body are leached into the intestinal tunnel.
"But the smoking neuropsychological gun of autism has not been discovered."
Tanya Craft swears the psychiatrist looked straight at her crowd-shy, sweetly awkward husband when explaining the genetic component to autism. Often parents of kids with autism do have faint versions of the same traits, gentle eccentricities that aren't strong enough to impair their lives. But at least Craft and Gwin weren't born four decades earlier, when high-profile psychiatrists assumed it was the chilly indifference of "refrigerator mothers" that made children autistic.
"Mia's our firstborn, and it was a totally normal birth and development," Gwin says. "When she was 8 months, I was out running with her in a jogger, and I looked down and thought she was dead. She was stiff, frozen, and her eyes were locked wide open. She came out of it in a few minutes, and someone who'd come over to help said, 'I think that was a seizure.'
"It seemed like the end of the world," Gwin says. "And it was just the beginning. She'd started to talk a little bit—da for dog, mama, dada—and she lost all her words. The lights went out. The day after her first birthday, she started having really bad seizures." (Seizures aren't typical of autism but often coexist.) In the next year, Mia didn't smile once. She was in and out of the hospital; she cried all the time; her mother did, too. "I kept thinking, 'This isn't the life I was supposed to have.'"
What brought her out of her depression was the birth of their second child, Max, a brilliant and good-natured kid who brought some sunshine and normalcy back into their lives. "We did a lot of genetic testing before getting pregnant," Gwin says. "No one ever said 'autism' to us, or we never would have had him. And it gives me chills to think about not having him."
Meanwhile, they've found medicine to control Mia's seizures. "Before that, we'd have to go to the emergency room and stay for hours," Gwin recalls. "Seizure long over, she'd climb all over everything. Once she pulled the fire alarm. That sped up the red tape!"
She laughs freely, amused and, thanks to her daughter, relaxed. "Mia brings us incredible joy," she says. "Everything is pleasurable to her, silly and funny. The other day she laughed, and Max said, 'Listen! That's what her voice sounds like.'
"It's not like I love her more or less than Max; it's just different," Gwin adds. "Pure. Our relationship with her is uncomplicated."
It's the world around them that's complicated, because they have to try so hard to control its variables and keep Mia safe. "The thing that bothers me the most is the lack of spontaneity," Gwin admits. No restaurants: Mia would never sit still. No visits to friends: "If she gets frustrated, she might start opening all the cabinets. She's completely wild. It has to be all about her." Do strangers assume she's spoiled? "Never." Gwin meets my eyes, fierce maternal love in hers. "I've been waiting all my life for someone to say that to me."
"It's not depressing anymore; it's not terrifying anymore," she adds. "If the hard part just kept going and going, you'd jump off a bridge. Now I look around at everybody doing what they want all the time, and it just kills me, but I get over it very quickly. Everybody has their own problems; ours are just out there for everybody to see. We're openly flawed."
Now the family's favorite saying is a verbal shrug: "It is what it is."
There was a time, though, when she thought her marriage would dissolve. "I was just crushed, and Brad was a complete rock star, taking care of both of us and telling everybody everything was going to be fine. And then I got better, and he went to pieces and said he didn't think he could deal with it and he just might want to bail out, and I said, 'Then I hate you.'
"His collapse was shorter than mine," she adds cheerfully.
So—what happened? "We figured out how to do this. Don't ever think today is the way the rest of your life is going to be. Like with any parent, you have a screaming baby, and you think, 'My God, this is my life.' With an autistic kid, it's that a million times over. I really thought I could never be happy again. But I trained myself to stay in the moment, and that fixed me; that healed me. I was afraid of having a 9-year-old girl who couldn't talk and couldn't ever be left alone, and I was in therapy, beside myself, not sleeping, terrified, and what I have now is exactly that, and I have a really happy, peaceful life."
Craft loathes giving Tanner so many high-powered meds—like the Vyvanse stimulant and the Geodon antipsychotic that keeps the anger and emotions in check—and she's regularly tempted to just take him off all of them. "Not until school's out for summer," his teachers beg, and his psychiatrist urges her to continue the regimen.
The underlying question is whether autism is a disease that needs to be medicated or a condition that needs to be adjusted to. "One way we draw the line is by asking, 'To what extent does this impair people's freedom to think what they want to think, engage in relationships with other human beings and control their emotional states?'" Constantino says. "A biological maneuver is warranted if it increases a person's freedom."
With other therapies, too, parents have to decide how far to push. "I don't want Mia to develop just enough skills to be frustrated," Gwin admits. "Mia's never expressed anger in her whole life; she doesn't know that emotion. She's very happy. She's also very foggy, and sometimes I feel like she's not quite with us. But when she is, we call her our little Buddha. She's completely without ego, completely in the moment."
That said, Gwin and Nuccio often wonder just how long to let Mia stay away in her own world. "She likes it there," Gwin says simply. "She teaches me every day how to take life less seriously; who am I to tell her that she needs to be more like me? But—will she start staying there more and more?"
Craft worries, too, every time Tanner flicks on a video game and enters an alternate reality he infinitely prefers. It's been said that machines are autistic, because they're unable to empathize, interpret facial expressions or make generalizations—and kids with autism are often very good with technology. The autistic social drive is to exchange information, not emotion. A few radical thinkers have even pronounced autism evolutionary, because it allows better interfacing with machines.
Milder activists in the growing neurodiversity movement define autism as an alternative way of thinking, sensing and interacting with the world. "We're here, we're weird, get used to it," they're saying. With a sudden flush of pride reminiscent of the gay, deaf and other civil-rights movements, they point out the deficits of "neurotypicals," including "dislike for people who are different," "refusal to accept that there is a problem" and "conforming attitude."
The neurodiversity movement's more than valid for those on what's called—in an unfortunate phrase better suited to appliances—the "high-functioning" end of the spectrum. But it starts to sound surreal when a preteen is nonverbal and still in diapers. "One has to be careful," Constantino says, "about normalizing autism to the extent that it would impair our ability to make scientific progress in helping those children."
Washington University researchers are rapidly and actively enrolling families in international registries and gene banks, so material can be shared with labs around the world, and Constantino runs a Baby Sibs program (infantsibs-stlouis.org) for parents who have a new baby and an older child with autism. Just figuring out how certain genes get damaged, and how to repair that damage, will take years—and then there are all those other cases, causes as yet unknown.
"Tanner's in his office," says Cathy Renkins, fourth-grade teacher at Keysor Elementary School, nodding toward the closed door that protects teaching supplies, a computer and the oft-overwhelmed Tanner. "The other kids understand that he is every bit as smart as they are, but he gets frustrated more easily, and inside, emotionally, he's like a little kid. Some fine motor activities are hard for him, or body movements in P.E., and if he can't do it perfectly, he's bothered by that."
In gym class, when the kids start yelling, Tanner claps his hands over his ears and yells, "Quiet!" At the start of recess, he's alone, throwing the ball, then throwing his lunch case. Kids are all over the playground, little clusters of energy, climbing, jumping rope, dancing. He keeps his head down, but he doesn't seem self-conscious about being alone. Uncomfortable, but not self-conscious.
He does a few dance steps, watching his feet, and a group of girls who adore him comes up to watch. He walks away, does a few leaps and stunts, and they applaud. Now he's leading them in a chorus line, and they're following his moves. He does almost a break-dance drop. He's got the moves—they're jerky, not smooth, but creative—and he and the girls run forward together, leap and kick. It's an interesting switch, watching them try so hard to imitate him. But I can't help wondering what will happen when he's older.
What will happen when Mia is older?
"The real thing we try hard not to think about is the future," Nuccio admits. They sink any extra money into a trust for Mia. And they wonder, in dark moments, what's going to become of all these kids with autism, and how society's ever going to pay for their care, and what caused all this in the first place.
