An Inconvenient Youth: Raising Children with Autism

I have loved my friend Erin Lopes since seventh grade, despite the fact that she's incredibly smart, hilarious, and looks like Natalie Wood. After working in epidemiology at the California Department of Public Health and earning a master's degree from UC Berkeley, Erin, continuing her trend toward excellence in all things, married Tim, a handsome attorney. They then had a boy and a girl, and bought a two-story house surrounded by trees in a cul-de-sac in suburban Philadelphia, which looks so adorable with its warm yellow lights that when we all pulled into the driveway the first time, I cracked, "Dude, who's your architect? Thomas Kinkade?"

I love Erin's kids, and am frequently rewarded with unidentifiable ceramic creations and fabulous felt-pen portraits. Evelyn, 8, is approximately 45 pounds of eyes, knees, pink plastic jewelry, and dimples. Thomas, who's 9, has such winning movie star looks, I call him Keanu Jr. You perceive that he's wired a little differently only when he talks.

On a recent visit, I walked into the house and gave Thomas a hug. "All that, just because of a cup of coffee!" he said in a cheesy TV announcer voice, rubbing my kiss off—a fantastic non sequitur that charmed my socks off. I am biased, naturally, as his honorary auntie. In 2002 Erin sent her friends an announcement that Thomas had been diagnosed with a form of autism. He doesn't process or express emotion the same way other kids do and often speaks in an unmodulated voice that is a little loud. But just now Thomas was able to encapsulate the dust storm of feelings swirling around my arrival (Hey! What's all this friendly commotion?) by quoting a TV ad that mirrored it surprisingly well. It was as if he knew he couldn't squeeze me the juice from a real orange, so he did an intellectual work-around and handed me a glass of Tang—a little prefab emotion.

Tonight, Erin—in between training for a half-marathon and earning a nursing degree—has invited me to a roundtable discussion with eight of her closest friends, a group that has in many ways become a lifeline of support. Most are mothers of autistic children who have connected through the Delaware County Family PDD/Autism Spectrum Support Listserv. These women share the kind of visceral bond I've otherwise seen only in soldiers—they have each other's backs and fight to keep each other's spirits up in what is a daily, ongoing battle to integrate their different kids into the "typical" world.

Every member of Erin's group has gotten that "look": Someone notices their child's autistic behavior and it feels as though they're being judged as bad mothers.

"I get the stares," says Corinda Crowther, a high school English teacher and mother of Max. "Like when your 9-year-old won't get out of the moonbounce at the street fair and you have to climb in after him, pull him out, and watch him tantrum—all the while trying to figure out how to remain calm, secretly wanting to be swallowed up by the asphalt. I can only imagine that the people staring are thinking, 'Wow, that mom really screwed up her kid.' When that happens, a part of me dies inside."

One of the most crucial and misunderstood aspects of autism is that it covers a wide range of disabilities. The brain development disorder—or more accurately, autism spectrum disorders (ASDs)—includes autism, Asperger's syndrome, and pervasive developmental disorder not otherwise specified, all of which impair thinking, behavior, language, and the ability to relate to others. Each child on the spectrum is a uniquely scrambled, genetic Rubik's Cube in terms of how his or her disorder manifests, how severe it is, and what medical issues accompany it. Although some autistic kids may respond well to some of the popular treatments, others, for baffling reasons, do not. ASDs affect about one out of 150 children, according to CDC estimates; however, there is no biological test for them (diagnosis involves observing the child's behaviors and skills), and science has yet to find either a conclusive cause or cure.

Everyone at the table has a traumatic memory of receiving the diagnosis. It is the beginning of an intense personal struggle to come to grips with the idea that your child is imperfect—a process that can shake a family to its foundations. At first there's a vast reluctance to admit that autism is the "real" diagnosis. These women have come to call that phase being "in the closet."

As the stories begin to roll out, Heather Haggerty (who recently earned her master's in occupational therapy, in part to help her autistic son, Padraic, now 10) raises a fist in the air and declares boldly, "Padraic does not have Asperger's! He simply has autism!"

The group applauds. It's a running joke: Admitting your child "simply has autism" (as opposed to the milder and comparatively glamorous Asperger's syndrome) is similar to introducing yourself at an AA meeting with "Hi, I'm , and I'm an alcoholic."

"There was a moment when I couldn't get that word, autism, out of my mouth," says Robert Naseef. "The A word!"

That gets a big laugh. Robert, the lone man here tonight and father of a severely autistic son, Tariq, is revered in this group for his books, including Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child with a Disability, and his psychology practice, which is devoted to families with special-needs children. Erin and Tim credit Naseef's counseling with saving their marriage.

"That was a big thing for me, being able to use that word, autism," agrees Margaret Ewing, who works for a center that brings art classes to schools in underprivileged communities. "I've probably only been doing it three, four years. And I have a 12-year-old."

"Welcome!" quips Heather.

Accepting the "A word" requires a learning curve. "You graduate to it," says Erin. "Because this is about: Let's call it what it is, let's deal with it together."

When it comes to dealing with autism, the medical community offers no standard treatment, although certain medications and therapies—including one-on-one applied behavior analysis, which teaches communication and socials skills, and floor time, when a parent or facilitator uses play to encourage engagement—may be prescribed to help with symptoms. The only point that's undisputed is that the earlier a child with an ASD receives intervention therapies, the better his or her outcome will be—and the pressure this puts on a parent is nearly unbearable. Any downtime, or financial restraint whatsoever, is a pipeline to constant guilt.

"I used to eat myself alive about how much money or time I was spending with Padraic," says Heather, who has three other children. "You know that if you spend 24 hours a day with this kid, drawing him out of his inwardness, you're going to make a difference. Ninety percent of my self-torture has come from not doing floor time with him because I'm making dinner. I've spent most evenings on the floor of my kitchen in tears.... There's never enough you can do. Ever.

"It's the old proverbial story," she continues. "If a car fell on top of your kid, a mom would be able to lift it off."

"The superhuman kicks in," Erin agrees. "But it's years of trying to lift that car."

"And you can't," says Heather. "And everyone's sitting on top of the car trying to hold it down. That's the way it feels."

"And you get tired," says Corinda.

"Pretty soon you realize the car is on top of you," says Erin.

After a certain amount of sleep deprivation, radical, unproven therapies can start to look reasonable—even promising. Upon hearing a miraculous testimonial from another mother, Corinda and Heather took their boys to a "biomedical treatment" practitioner. Now, when talking about "Dr. Q" (not her name), they both assume the pained expressions people get when looking at their high school yearbook photos. "I can't talk about it with a straight face anymore," laments Heather.

"Dr. Q was $500 initially, then every time you talked to her it was $75 and a trip to the grocery store," groans Corinda.

"She would call you in this flurry in the middle of the night: 'Do you have any avocado oil?! Padraic's not autistic! Something is ravaging him and causing these behaviors! You need to rub avocado oil on his shins every two hours!'" says Heather. "Here's me, brand-new to this whole world. I have a toddler. Padraic's still nonverbal. Very dark place.

"By the end," she continues, "I had to separate 12 egg yolks and put a jar of Grey Poupon in Padraic's bath. I had to slip in at night and put artichokes in his socks. I had to rub down very specific parts of him with yogurt. The poor thing is probably autistic because of what I did to him."

(This is a laugh line, by the way. Autism Mom humor is delightfully brutal.)

"She told us to put lighter fluid on Max's feet," remembers Corinda. "My brother-in-law, a doctor, said, 'I really don't want you to do that.'"

"Now we'd never do it," says Heather. "But back then, more than anyone else, Dr. Q was giving us hope. Those were the early days. That's when you're really in the dark."

Once in a while, the blind, hunt-and-peck search for effective cures can yield life-changing results. That's because some of the behavioral problems in these kids are compounded by other medical conditions that can accompany autism. Gastrointestinal problems, for example, are common, which is why dietary changes may improve an autistic child's responsiveness. Thomas and Max also suffer from epilepsy, and as a result, Erin and Corinda have compared extensive notes on medications and lifestyle changes to stop or slow the seizures, which can radically improve a child's development. Occasionally when trying other treatments, there are complete surprises.

"Max didn't talk for a long time," says Corinda. "We assumed it was because of autism. We went to all the best hospitals. Finally we went to the Mayo Clinic when he was 6. We were there 24 hours, and they said, 'Your kid isn't breathing at night. We need to take his tonsils out.' Once they took them out, he started sleeping through the night for the first time. It was amazing. Three weeks later, he started talking."

"It was astounding," says Erin, after a moment.

"I still get goose bumps," said Heather.

"Me too," adds Erin's husband, Tim, popping his head into the room.

Would you call it a miracle? I ask.

Everyone nods solemnly.

"That's what it was," says Corinda. "It was his speech therapist who finally told us to go to Mayo. How do you thank her? Thank you for giving...?"

For giving your child his voice. Nobody says it; we're all trying not to cry. 

The women admit to bouts of depression. "We've all been on 'the cocktail' at one time or another," says Heather, referring to antidepressants. Caring for a child with any disability is challenging, but when the kid can offer a smile or hug, it makes a parent's job a little easier. Children with autism, however, are "blessed" with the tendency to push people away. "My kid bites me. Punches me. When he was little he would rip hair out of my head and chunks out of my skin. He ripped the door off its hinges last summer," says Heather.

Stacey O'Rourke, who works full-time as a pharmaceutical representative, finds the emotional disconnect particularly difficult. Her 4-year-old daughter, Katelyn, is severely autistic and doesn't clearly demonstrate reciprocal love. Stacey's twin girls, age 2, are also worrying her: They don't point, wave, or respond to their names very well. "People say to me, 'Oh, your daughter must really be into Christmas now because she's 4.' No. She has no clue about Christmas. These are constant reminders about how 'not normal' my life and my daughter are. You don't even want to talk to anybody new, so you don't have to explain. It's a continuous grieving process. You go through it every time your kid doesn't reach that next milestone. You realize how far behind you are."

Age 9, the group agrees, is a tough milestone.

"You really think that by 9 they'll be better," says Corinda.

"Because at 9, that is 'the kid you have,'" Erin agrees.

Once in a while, the blind, hunt-and-peck search for effective cures can yield life-changing results. That's because some of the behavioral problems in these kids are compounded by other medical conditions that can accompany autism. Gastrointestinal problems, for example, are common, which is why dietary changes may improve an autistic child's responsiveness. Thomas and Max also suffer from epilepsy, and as a result, Erin and Corinda have compared extensive notes on medications and lifestyle changes to stop or slow the seizures, which can radically improve a child's development. Occasionally when trying other treatments, there are complete surprises.

"Max didn't talk for a long time," says Corinda. "We assumed it was because of autism. We went to all the best hospitals. Finally we went to the Mayo Clinic when he was 6. We were there 24 hours, and they said, 'Your kid isn't breathing at night. We need to take his tonsils out.' Once they took them out, he started sleeping through the night for the first time. It was amazing. Three weeks later, he started talking."

"It was astounding," says Erin, after a moment.

"I still get goose bumps," said Heather.

"Me too," adds Erin's husband, Tim, popping his head into the room.

Would you call it a miracle? I ask.

Everyone nods solemnly.

"That's what it was," says Corinda. "It was his speech therapist who finally told us to go to Mayo. How do you thank her? Thank you for giving...?"

For giving your child his voice. Nobody says it; we're all trying not to cry. 

The women admit to bouts of depression. "We've all been on 'the cocktail' at one time or another," says Heather, referring to antidepressants. Caring for a child with any disability is challenging, but when the kid can offer a smile or hug, it makes a parent's job a little easier. Children with autism, however, are "blessed" with the tendency to push people away. "My kid bites me. Punches me. When he was little he would rip hair out of my head and chunks out of my skin. He ripped the door off its hinges last summer," says Heather.

Stacey O'Rourke, who works full-time as a pharmaceutical representative, finds the emotional disconnect particularly difficult. Her 4-year-old daughter, Katelyn, is severely autistic and doesn't clearly demonstrate reciprocal love. Stacey's twin girls, age 2, are also worrying her: They don't point, wave, or respond to their names very well. "People say to me, 'Oh, your daughter must really be into Christmas now because she's 4.' No. She has no clue about Christmas. These are constant reminders about how 'not normal' my life and my daughter are. You don't even want to talk to anybody new, so you don't have to explain. It's a continuous grieving process. You go through it every time your kid doesn't reach that next milestone. You realize how far behind you are."

Age 9, the group agrees, is a tough milestone.

"You really think that by 9 they'll be better," says Corinda.

"Because at 9, that is 'the kid you have,'" Erin agrees.

McCarthy's controversial autism group, Generation Rescue (also publicized by her boyfriend, Jim Carrey), contends—despite solid evidence to the contrary—that vaccines are primarily to blame for the recent rise in cases of autism. (Last February a special federal court set up by Congress ruled that childhood vaccines do not cause autism.) McCarthy also claims that autism can be "reversed" through various regimens and therapies (many of them non–FDA approved and expensive)—her own 7-year-old son, who was diagnosed with autism in 2005, is now, she says, "recovered." For this group of mothers, who have spent the bulk of their children's lives frantically trying every treatment they could get their hands on, McCarthy's ideas can feel like salt in a wound.

"The fact that you would do all the things Jenny McCarthy wants you to—but the fact that you can't—is the most desperate, hopeless feeling in the entire world," says Heather. "I distinctly remember standing in my front yard. My husband was mad at me because I wanted to try another therapy for Padraic. I said, 'I don't care if I have to live in a cardboard box! I will charge every card that we have and do whatever I have to do for him!' And my husband never fought me again. Now we're in debt up to our ears."

This is another laugh line at the table, because almost everyone relates. (Informal marriage counseling is an added benefit the group provides.)

"We would have to mortgage our house if we wanted to try to live up to what Jenny McCarthy has supposedly done for her child," says Stacey.

"What gets me," Erin adds, "is, what if these treatments don't work? What if you do all of it and you still have autism?"

And that leads to a bigger issue—one that really burns this group: the implication that accepting your child's autism is not okay. This attitude is due in part, they feel, to Generation Rescue's dominating and oversimplifying the conversation in America about autism. The simple fact is that not all autistic kids can "recover." "We need to reexamine what it means to be a successful adult," says Erin. "To me, now, a successful adult is a functional adult. We need to give these kids an opportunity to have a shot at meaningful jobs and secondary education. Maybe they'll be bagging groceries, but they'll be paying taxes. They'll be law-abiding citizens. It's not just about the money we'd save, it's about the contributions these kids will make that will benefit everyone. I strongly believe that the energy crisis is eventually going to be solved by an autistic 10-year-old boy who is perseverating on batteries. He's got that kind of focus."

At this point, however, society still has a long way to go in terms of tolerating people who behave in unfamiliar ways.

"One thing I've been fearful of is standing in line at the airport with your autistic child, and your kid saying, 'Mom! I've got a bomb!' How the hell am I gonna deal with something like that?" asks Margaret.

I tell her my great-grandmother carried a card in her wallet saying I AM A DIABETIC. I HAVE NOT BEEN DRINKING. If Henry had a card, what would it read?

Margaret exclaims, "'I'm not inappropriate. I'm just autistic.'"

The table erupts in wild cackling.

"You really need a good sense of humor," says Margaret, wiping tears away. "This support group is lifesaving. There's just no other word for it. We laugh a lot. It helps us, doesn't it?"

"It saves me," says Heather.

"It saves me," says Erin.

As the evening winds down and everyone starts thinking about leaving, Erin takes a moment to tell a story from their larger online community. A mother of a toddler recently contacted her after receiving an ASD diagnosis, and asked Erin, "If you had to start your path over, what would you do differently?" Erin tells the group, "I wrote her back and said, 'I'd have done less. I would have enjoyed my child more.'

"I'm proud of Thomas," she continues. "I love him, and I love the autism in him. I'm going to help him be the most functional adult that I can, but I love him exactly the way he is. Every family needs to hear that it's not an easy road, but their child, despite the diagnosis, is worth every ounce of their investment because triumph really is possible."

The table discusses various newspaper stories that inspire them—an autistic girl goes to college, an autistic man gets married. With enough care and investment, autistic people may go on to lead normal—and in some cases even extraordinary—lives. But Erin continues: "I worry about a world in which 'cures' can be obtained by some and not others. We need to convey that it's okay to have autism—to the 10-year-old boy who obsessively talks about model trains, to the 16-year-old boy who worries that he's different, or to the 25-year-old woman who can't form relationships—we need to show them: You're one of us. It's okay. We accept you."

A few weeks after the dinner, I get an e-mail Stacey has sent to the group: Her twin girls—2-year-old Julie and Megan—have received a diagnosis on the autism spectrum, though not as severe as Katelyn's. (Parents of a child with an ASD have a 2 to 8 percent chance of a second child's also being affected.) "It's a knife in my heart," she writes. "I am scared to death for my daughters' futures, and whether I'll have the resources and ability to help them." But by the time I talk to her on the phone, the other mothers have already come to her aid, especially Heather, who is providing occupational therapy for all three of the girls through her employer. "The emotional support from the group, at least, is a silver lining," Stacey tells me. "These friendships are remarkable."

Erin, too, tells me she's suffered another blow. Thomas's doctor has determined that the seizure disorder will either remain as it is or eventually get worse. "But the same day, as Thomas and I were sitting in the neurology waiting room," she says, "his best friend called. I could hear him shouting, 'Dude, we made it! Our band got into the school variety show!'"

A couple of weeks later, Thomas and his band performed "Enter Sandman," by Metallica, on their school stage. I saw the video, and there he was: a very handsome, slightly aloof little rhythm guitar player in a black T-shirt, occasionally flashing a dazzling, blushing smile into the roaring crowd. As I said, I'm biased, but Thomas rocks.

Cintra Wilson writes regularly for The New York Times and is the author of three books, including Caligula for President: Better American Living Through Tyranny (Bloomsbury USA).