“A Fathers Pursuit” wins national award for NC State magazine
~posted 04.30.2009

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Assistant editor Cherry Crayton ‘01, ‘03 MED wrote the Autumn 2008 article about one man’s efforts to find a cure for his son’s autism. Her work won a national bronze award in the category of Best Articles of the Year: Higher Education from the Council for Advancement and Support of Education.

NC State magazine is a benefit of Alumni Association membership. Photograph by Tony Deifell.

A Father’s Pursuit

When the M.I.N.D. Institute’s 101,997-square-foot facility opened at the University of California-Davis in April 2003, The Wall Street Journal called it the “first facility of its kind with a new model for fighting disease: mixing clinical and research spaces in the same complex.” And the National Institute of Mental Health has declared it “the hope for people with autism.” It wouldn’t have been built without the advocacy of Chuck Gardner ‘83.

In Sacramento, Calif., in the early 1990s, Chuck Gardner ‘83 walks into a preschool to pick up his 2-year-old son, Chas.

All the kids are laughing, playing, interacting. “They’re having a great time,” Chuck says. All except Chas. Instead, he sits alone in the corner of a sandbox, far from the other kids. He has a fire truck—turned upside down—in his hands. He spins the wheels. “There’s something wrong,” Chuck says to himself. “He’s not like the other kids.”

Just a few months earlier Chas seemed like the other kids. He looked normal. His biology was normal. He was imitating others, hitting developmental milestones and learning words. He knew 20 by the time he was 15 months old. But by his second birthday, he started losing them.

Chuck thinks it’s because they’d moved when his wife, Sarah, a broadcast journalist, landed a job at the NBC affiliate in Sacramento; they’d gone from living in North Carolina, where they were surrounded by lots of family and friends, to knowing no one but each other. They hope that in a preschool Chas will get to know other kids and get back on track with his language development. When that doesn’t happen after several months, they press the pediatrician about what could be wrong. “Ah, they’re boys,” the pediatrician tells them. “They are slow to talk.”

Chuck and Sarah try to believe it. But soon Chas isn’t just losing words and keeping to himself; he’s also going “on and on and on”—nearly four years—without sleep. “It’s heartbreaking,” Chuck says. “You have this kid who was perfectly normal. Then he just vanishes before your eyes.”

Over the next six months, Chuck and Sarah take Chas to numerous doctors. In 1994, when he’s 2 years old, they end up with a pediatrician in San Francisco, Calif. Over the course of three hours, the pediatrician gives Chas a battery of tests, observes his behavior and asks Chuck and Sarah a series of questions. The pediatrician diagnoses Chas with autism. Her recommendation: Go find a nice institution for your son and get on with your life.

Chuck and his family leave her office. On the nearly two-hour drive home, he feels as if he’s in a dream. “This isn’t our life,” thinks Chuck, co-owner of building contractor Hallmark Group. “This stuff doesn’t happen to families like ours.”

When he gets home, he carries Chas to his bedroom to rest. But because Chas doesn’t sleep, he sits in his father’s lap. He quickly jumps up, pulls a toy from a chest and hands it to his father. The act stirs Chuck. Earlier that day, the pediatrician had listed Chas’ deficiencies, such as the inability to communicate and the inability to appreciate when others are around. One example she’d offered: “When I was watching him play in the same room with you, he never brought you a toy.”

Now, just hours later, Chas has. “Maybe it was a coincidence,” Chucks says, but he takes it as if there’s something going on in Chas’ mind. “Don’t give up on him,” he tells himself. Chuck and Sarah try to learn everything about autism. His first Internet search returns only about 100 hits; he reads every link. “That’s how little [research] was being done,” he says.

He learns autism is a neurological disorder that presents a spectrum of symptoms and characteristics that affect a person’s ability to communicate and relate to others. The spectrum ranges from the high cognitive functioning and mildly impacted, such as those with Asperger Syndome, who are able to hold jobs but have trouble interpreting facial expressions, to the low cognitive functioning and severely impacted, such as Chas.

Chuck then talks with dozens of doctors, researchers and clinicians, and he reads dozens of studies and books. But the more research he does, the more he realizes how little is known. “There were no medical experts; no one knew what was going on,” he says.

And though the Gardners visit dozens of specialists over the next several years, no one seems to know how to help Chas. For instance: Chuck takes Chas to visit a pediatrician because his son has developed severe gastrointestinal (GI) problems and becomes almost intoxicated when he eats certain foods. The doctor tells Chuck: “Well, he’s got autism. I can’t do anything.”

Granted, Chuck hasn’t come across GI distress as a symptom of autism in the information he’s read in the fourth edition of Diagnostic and Statistical Manual of Mental Disorders. Listed are its hallmarks—communication and social impairments—and the acknowledgment that there are different degrees of the disorder. But isn’t it possible that autism affects the immune system of some people impacted by it? “You can’t just write him off because he has this label of autism,” he says. “You cant tell me you shouldn’t be looking at the biology that underlies these other symptoms.” Frustrated, he sets out “on a . . . quest to find out what was really going on.”

At first, he talks with even more clinicians, educators, researchers and parents of autistic children. He asks researchers if they’ve read the research of other scientists. They haven’t. He asks clinicians if they’ve talked with other clinicians. They haven’t. He asks both clinicians and researchers if they’ve talked with one another and with educators. They haven’t.

“It was like running a project without a project manager,” he says. One day, in 1996, Chuck is on the University of California-Davis campus for a construction project he’s managing. He drives by the university’s Center for Neuroscience. He thinks that if he could only talk to a neuroscientist and explain the research he’s done and his observations of Chas, the researcher would be compelled to take on the thorny questions surrounding the disorder.

He shares this with his friend Rick Hayes, a marketing expert with a Harvard MBA and an autistic son. Together, they sit down and approach learning more about autism the way Chuck approaches his job: They lay out a critical-path schedule, identifying all the steps they must take to complete a project. A necessary step, they agree, is founding a research institute for autism.

Chuck makes an offhand comment about this idea to another friend, who says he knows Dr. Hibbard Williams, then the dean of the UC-Davis School of Medicine. The friend schedules a dinner between Hibbard and Chuck. At the time, the medical school is looking into new areas of research, and Hibbard wants to hear more. The dean arranges for Chuck to make a pitch to the associate deans and various department heads.

During his presentation, Chuck notices that everybody’s faces are blank. “They had totally checked out,” he says. He stops his pitch. “Are you guys not getting it?” he asks. “What’s going on?”

One speaks for the group: “You have to have money.”

“Money? That’s it. If we had the money, you would do the research?” Chuck says. “How much?”

“You’re going to need $5 million to get started.”

The meeting wraps up. Chuck leaves excited. “I’m only $5 million away!” he tells himself. “If I can go raise $5 million, we can start finding a cure for autism.”

Chuck shares the news with a friend, Rick Rollens, the father of an autistic son. A lobbyist who had served as secretary of the California Senate for 20 years, he tells Chuck it’s going to be a difficult and nearly impossible process. Not only will Chuck need the $5 million in seed money, he’ll need to work through the incredible layers of red tape posed by the University of California System to get approval for the project. He’ll need to get the legislature behind him. He’ll need a recurring, permanent source of funds.

Undeterred, Chuck reports back to Rick Hayes. He’s excited. They touch base with another friend, Lou Vismara, who also has an autistic son and whom Chuck describes as “a very accomplished heart surgeon who had saved a lot of wealthy guys’ lives.” Lou starts making calls, and the affluent acquaintances start writing checks. In less than a year they raise the money. UC-Davis contributes an additional $1.5 million and 11 acres. In July 1998, the Medical Investigation into Neurological Disorders Institute, or the M.I.N.D. Institute, opens in a building on the UC-Davis campus with one research position.

But Gardner wants more: a full-fledged center with hundreds of researchers.

The fathers’ success in fundraising and the demonstration of the university’s commitment to the project convinces Rick Rollens that Chuck’s idea might have legs. He goes to work writing and pushing legislation. The California Senate passes legislation in 1999 that allocates $40 million to build a research institute for autism and earmarks $5 million in state funds annually to its operation (which has since been reduced to $3.8 million).

But a debate lingers over the purpose of the research center. Chuck envisions that its overriding mission is to find a cure for autism; the M.I.N.D. researchers aren’t sure it’s curable. At the time, Chuck says, “there really wasn’t much research into autism, and no one thought it was a curable disease.”

So he shares with them his experiences with Chas. His doctors, urged by Chuck and Sarah, try a combination of pharmaceutical and behavioral interventions to look at the biology underlying his GI and sleep problems. By the time Chas is about 7, they find a cocktail of medications that helps him sleep. They also take care of the GI distress by putting Chas on a diet free of gluten, a protein in wheat, and casein, a protein in milk. This leads Chuck to believe that children with autism may have a different biology or immune system than others; that “autism was a medical disorder, not just some obscure mental and behavioral disorder;” and that it can be cured.

“You have to remember this,” he tells the reluctant scientists. “This was a kid who had more words when he was 15 months old than when he was 5 years old. So that tells me that there was something there and something was working and connections were being made. And then something happened. And it wasn’t like he was in an accident where he had some damage that was irreversible. Something biochemically happened that caused him to lose his ability. And if it can happen, maybe it can un-happen.

“I won’t be a part of any effort that is not designed and dedicated to finding a cure,” he adds. “How can you cure it if you don’t believe it can be cured?”

The scientists hear him out. Chuck oversees the construction of the permanent facility at UC-Davis, and the 101,997-square-foot center opens in April 2003 with the mission to “ultimately develop cures for autism . . . and neurodevelopmental disorders.”

Since then, the center has grown to 260 employees and has produced several “breakthroughs,” Chuck says. Among them: Researchers have discovered there are different kinds of autism the same way that there are different kinds of cancer, and children with autism have different immune system responses than other children. Ongoing studies attempt to determine the roles that a dysfunctional immune system might or might not play in autism. Through the Autism Phenome Project, for example, researchers are medically evaluating and analyzing the immune systems, brains, genetics, environmental exposures and blood proteins of 1,800 children who are autistic, developmentally delayed and normally developing.

M.I.N.D. scientists also have found a certain group of antibodies in women that can be predictive as to whether they’ll have children with autism. Potentially, doctors can locate and remove these antibodies in women before they have babies.

And, as 1 in 150 American 8-year-olds have some form of autism, according to the Centers for Disease Control and Prevention, the institute has helped get scientists, journalists, legislators and parents to talk in a different way about the disorder, he says. Many are no longer asking if autism is a curable, treatable and preventable disorder, but rather how it can be treated, cured and prevented.

What has come out of M.I.N.D. to help Chas? “That’s the real irony in this whole story,” Chuck says. “The answer is nothing.”

Today, Chas is a 16-year-old, handsome “gentle soul” with brown eyes
and brown hair, his father says. He likes Disney characters, water tubing and amusement park rides. But he can’t make sense of the world. His life, his father says, is a lot like being on a telephone call that keeps breaking up. He can’t hear part of the conversation or get his point across. “It appears that he can’t process information from his environment,” Chuck says. “He can’t get people to understand what he wants.”

Every once in a while, Chuck and Sarah understand and get it right. One moment happened this summer when Chuck, Sarah and Chas went to Disneyland. As soon as they walked through the amusement park’s gates, Chas caught sight of several Disney characters. He cocked his head to the side, in the direction of his parents, and gave them “a little sideways smile,” Chuck says. “For my wife and me these are very special moments. . . . It makes all the effort you go through
worthwhile.”

Those efforts extend well beyond M.I.N.D. While its researchers look for a cure and treatment for autism, Chuck works to improve the quality of Chas’ life in a way that is meaningful for his son and that parallels his growth. He’s helped start a school and after-school program for children with autism. And he’s helped start a program to provide early intervention services to families with autistic children. These initiatives serve about 300 children in the Sacramento area.

Chuck also is working to reinvent the way California houses adults with autism and other development disorders. A pilot project is nearing completion to move people with these disorders from a state-run institution to homes in the community. These houses have been refashioned so they are more responsive to the needs of people with disorders. For example, Chuck and the other pilot-project organizers are building walls with plywood behind drywall so a person with behavioral issues can’t punch holes in them.

They also have created a new group-home model so the people who own the house are not the same ones who provide services to the residents. Under the pilot project, if the service providers do a poor job, they can be removed without disrupting those who live in the home. “We’re kind of trying to solve the problems for one child – mine,” he says, “but . . . we always try to think of solutions that are scalable.”

Chuck’s long-term ambitions include creating a university-type system that would formally educate people with autism and award degrees in areas such as food service and organic farming. He even envisions getting them part of a “program that would make them some partial owner of a business rather than just being some low-level employees that maybe somebody out of the goodness of their hearts employs because they feel like it’s the socially responsible thing to do.”

Chuck admits, however, he’s having a hard time “thinking about what [Chas] is going to do . . . because he really is profoundly impacted.” Chas still isn’t toilet trained, he can’t speak, he can’t sit still and he has the mental capacity of a toddler. Chuck doesn’t know how this will translate into a job or life in a group home.

But he recalls how Chas loves Pepsi, though soda is prohibited by his diet to minimize GI and sleep distress. Still, if Chas catches sight of a Pepsi, he’ll go for it. You can try to keep it out of his hands, but he won’t forget about it and he won’t relent. Minute after minute, hour after hour—for an entire day or two—he’ll keep at it. And as soon as you turn your back.

“Here’s this kid. I’m bigger, stronger, faster . . . , but he would get the Pepsi,” Chuck says. “Despite all his deficits, the way he gets things is that he doesn’t quit. He. Will. Not. Quit. . . . And if there’s any magic to being successful, it’s perseverance.

“As unrealistic as people think I am,” he adds, “I’m not going to let go of the hope that we are one day going to find [a medical intervention that] make[s] a meaningful difference in his quality of life. And I don’t rule out that one day we will be able to cure him.

“I will always hang on to that, and I will go to my grave with that little bit of hope.”

Amy Guyer, a freelance writer in Indianapolis, Ind., contributed to this story.