ON A MISSION
When autism "stole" her child, this mother and her family began their fight for their own welfare and that of all who must deal with this disease.
photography by Fran Collin
They were an affluent young couple, with a healthy little boy and a lovely baby. A dream-like family scene? It was about to become part of a national nightmare: the epidemic of autistic children.
When he was two years old, the older child, Christian, developed extreme anxiety, was constantly fearful and displayed violent tantrums, as well as a host of severe gastrointestinal and immunity problems. His parents, Andreas Hildebrand and Katie Wright (she uses her maiden name), were assured by the pediatrician that it was a "stage," possibly brought on by having a new sibling. But over the next six months, Christian lost his verbal skills and ability to interact with other children. "His world became very small," Katie says. She and Andreas insisted on a referral to a developmental pediatrician, whose devastating diagnosis was autism spectrum disorder (ASD).
Katie and Andreas initially were told Christian's was a "mild" form. Andreas' first reaction was, "We'll fix this." But an evaluation at New York's Columbia University Medical Center failed to come up with anything the doctors thought they could treat medically.
Frustrated by not being able to utter more than incomprehensible sounds, Christian began having tantrums that lasted for hours, keeping his exhausted parents up half the night. Now five years old, his diagnosis has been changed to the more serious classification of "regressive autism."
There weren't many educational facilities for an autistic child where the family lived in Connecticut, so two years ago the family moved to Manhattan to enroll Christian in the specialized McCarton School, which is solely for autistic children. The tuition is $84,000 a year, and despite the cost, there's a long waiting list. Neither the government nor insurance companies provide any reimbursement for the tremendous medical and educational expenses.
"We went through all our finances in two years," Katie says. They sued New York City for failing to provide adequate public school facilities and won the suit-enough to cover the tuition for a year-but, says Katie, the suit has to be refiled each year, and she admits she's not too hopeful of winning again.
Under an Applied Behavioral Analysis (ABA) program, a therapist comes to the family apartment six days a week to work with Christian on attentiveness, social interaction and language skills. Each $60-an-hour session lasts from two to three hours. Since ABA rules stipulate that a parent has to be present in the apartment during this time, Katie is unable to leave.
"You deal with autism every meal, every diaper, every tantrum," says Katie, noting that five-year-old Christian still requires diapers. It's slightly easier for Andreas, she says, because he goes out to work, commuting to Stamford, Connecticut, where he's vice president at GE Asset Management.
Although still young-she's 38, he's 39-the couple's social life has become virtually non-existent. "Our old friends didn't understand why we couldn't participate socially," she says. "We couldn't leave Christian with a sitter until he was asleep because we were afraid he'd be screaming, and by that time we were too tired to go out. And we couldn't take him to restaurants or the circus." For the first eight months after his tantrums began, they barely left the house. "It was like being under siege."
They now have a "wonderful circle" of new friends, all of whom are parents of McCarton schoolchildren. "It's important to be with people living the same things you are," Katie says. They share holidays and experiences, even managing to find some humor in their respective situations. Katie told her new friends about the day she was at the playground with Christian and he had one of his tantrums, screaming and hitting her. "Someone called the police because they thought I was abducting him. When I explained he is autistic, they backed off as if I were radioactive." She can laugh about it now, she says.
Like most caregivers, Katie finds that people make "weird remarks" in a misguided effort to be helpful. "A woman told me that my older child should have been the healthy one so he could help with the younger one. I said, ‘Why didn't I think of that?'"
At first, she confides, she was terrified for her younger child, Mattias. "Statistics show the sibling is ten times as likely to have autism, too."
Now that Mattias is a healthy three-year-old, Katie breathes a little easier because autism usually develops in the first two years. But Mattias is a victim of the family pressures. "He can't understand why his older brother won't play with him or say his name the way he once did." And Katie admits to feeling "guilt stricken" about the many times she's had to leave Mattias with a sitter while taking Christian to therapy appointments. "Your well child's life shouldn't have to revolve around his sick brother."
Fortunately, the family has unwavering financial and emotional support from Katie's parents, Suzanne and Bob Wright. Bob is CEO and chairman of NBC Universal.
"I told them about Christian right away," Katie says, "and they went on a mission." As a result, in 2005 they founded Autism Speaks to raise money for research and to increase public awareness via a campaign that has included TV talk show appearances, public service advertisements and even a cereal box initiative with Rice Krispies. "My parents met a lot of people who began coming out of the closet [regarding their association with an autistic child]." In its first year, Autism Speaks raised $40 million!
"Autism has become the biggest developmental disorder among children," Katie explains. One child out of every 166 falls somewhere on the autistic spectrum, four times as many boys as girls. Speculation as to the possible cause of autism ranges from genetics to environmental factors and vaccines, but nothing has been proven yet.
Formerly a social worker, Katie now works from home, making fundraising phone calls as part of Autism Speaks' Mental Health Committee. She strongly believes money should also be used for family therapy, to help parents cope with the tremendous toll the illness takes on them. "Money is a big stressor," she says, and between that and constant exhaustion, "eighty percent of the marriages [between parents of an autistic child] end in divorce." When parents tell her they'd rather have money spent on research than on family therapy, she points out that what helps the family stay together also helps the child.
She and Andreas now are trying to get out at least once or twice a month. They have found several women capable of sitting with Christian. "The sitter has to be with him every second, because he might turn on the stove." The most important factor in choosing sitters is warmth, she emphasizes, and how they connect with the child. Katie adds ruefully that, where her parents had one baby sitter for three children, she and Andreas have to have two sitters, with a separate one for Mattias.
Her "enormously supportive" siblings-Maggie and Christopher Wright-keep trying to connect with Christian, too. She and Andreas communicate with him "mainly through actions," she says. "He has good receptive understanding." For instance, when she asks if he's hungry, Christian starts taking food out of the refrigerator. But he doesn't initiate contacts with the other children in school. "I have to prompt him," Katie reports.
He does respond to the Beatles! "Christian's a huge fan," she says. "He hums along with the CD, bobbing his head, repeating, ‘Music...music....'" He's also affectionate with his parents. "He likes to cuddle, stroke my hair, have physical closeness with us," Katie says wistfully. Looking at pictures of the laughing toddler he once was, she says, "He was stolen from us. All the hopes and dreams you had for your child are taken from you, too."
Still, they refuse to give up. Christian is now "stabilized," Katie reports. She believes that, if they can make him physically healthy, he'll learn to talk again. "That would make such a difference in his life-and ours.
"We just want our child the way he was," she says.