One dad’s fight against autism
Devastated when his only son was diagnosed with autism, Dr. Lou Vismara transformed his life and helped launch the world-renowned UC Davis MIND Institute
The thought that something was wrong struck him like a bolt of lightning one workday morning 13 summers ago. Dr. Lou Vismara lay in bed, in that twilight space somewhere between waking and sleep, and heard the sounds of his 16-month-old son chattering away in another room. It hit him: “Gosh, could Mark have autism?”
Mark, Vismara’s fourth child and only son, was perfect at birth. As he grew, he thrived. But when he was nearly a year old, he wasn’t saying “mama” or “papa” as kids his age typically did. Pediatricians told the Vismaras not to worry, saying all the things parents of autistic children heard so often just a decade ago: “He has three sisters who talk for him.” “Einstein didn’t talk until he was 5.” “Boys develop later than girls.”
But Vismara’s stroke of insight made him decide to dig deeper. He dusted off his 30-year-old pediatric textbooks from Baylor College of Medicine and began reading. Autism was considered a rare disorder then, afflicting just one of 10,000, and blamed on so-called “refrigerator moms” thought to be incapable of relating with loving warmth to their children. Those are slim chances that his son could be affected, Vismara thought. Besides, Mark was affectionate and cuddly, not aloof and distant like the kids the textbooks described. And language is a natural process, Vismara rationalized; everyone learns to talk. “We’ll just wait. Mark’s going to be fine.”
Less than a month later, though, it was clear that Mark hadn’t hit many of the normal developmental markers for his age. By 18 months, Mark had seen a parade of specialists, and their diagnosis was unequivocal: full-spectrum autism.
“That was devastating,” the 65-year-old Vismara said in a recent interview, his voice softening and his eyes filling with the memory. “Oh yes, horrific.”
Some might think people suffering from autism are like Raymond Babbitt in Rain Man, with his spectacular memory and high-speed arithmetic ability. But savants with “islands of genius”—extraordinary mathematical or musical ability—are rare. Children like Mark, with full-spectrum autism, have difficulty with language and social interaction and often exhibit odd behaviors. As with the Rain Man, many are resistant to change in the environment or daily routines and may exhibit unusual responses to sensory experiences. Autism is a disorder that can range from mild to severe and display varying symptoms in each person who suffers from it.
Autism turned Lou Vismara’s life upside down and set him on a path of personal and professional transformation. He gave up his practice as a highly respected cardiologist. Within a few years, he’d join four other Sacramento-area dads of autistic sons to co-found what has become one of the country’s leading research centers, the MIND Institute at the UC Davis School of Medicine, for the study of autism and other neurological disorders. Eventually, Vismara would find himself at the center of everything that goes on in the world of autism, when it comes to medical and public policy, for the entire state of California.
Few men in their 50s would have been able and willing to dramatically remake their life’s priorities in this way, but Vismara set out on his new journey without looking back. He felt he had no choice. He’d decided to find a cure for his son.
When Mark was diagnosed in the mid-1990s, no one knew what caused autism. A hodgepodge of symptoms defined this disorder without a cure. Autism could not have been more different from the diseases Vismara healed every day as an interventionist cardiologist, using highly technical procedures like cardiac catheterization, stents and angioplasty. That difference threw him for a loop.
In the two-plus decades he’d practiced cardiology, Vismara had seen advances in knowledge and technology that reduced the odds of dying from a heart attack from 20 percent in the 1960s when he graduated from medical school to just 2 percent when Mark was diagnosed in the mid-1990s. There had to have been similar advances in autism, he thought. As a doctor, Vismara was in a better position than most parents in similar situations to understand the disorder, access the right specialists, identify the best treatments—find the cure. But everywhere he turned, he ran up against a brick wall. When he went looking for the Michael DeBakey of autism (DeBakey is a world-renowned heart surgeon from Vismara’s medical school alma mater), he found there was none. When he read the literature, he found only a jumble of confusing and conflicting speculation about what worked and no evidence. As to a cure to the mysterious malady, he didn’t find one.
As a cardiologist, Vismara had become exceptionally skilled at stuffing his feelings deep down inside. Now, unfamiliar emotions flooded through him until he sometimes felt as if he were drowning. Uncertainty was the worst. It scared him, made him anxious. It threatened to steal his hope and replace it with helplessness. Like many parents of autistic children, he also felt anger, guilt and shame. For the first two years, he kept Mark’s diagnosis a secret from everyone but family members.
Autism took over the lives of Vismara, his wife, their young daughter and his two teenage daughters from a first marriage. It also isolated them in important ways. In those early years, Vismara imagined that he was the only dad who took his son to the zoo in Land Park not to see the animals but for the chance it might offer for Mark to interact with other children. Embarrassment led Vismara to turn quickly down an aisle in the supermarket if he spotted friends or patients when Mark was having a bad day. At work, Vismara invented stories to explain to co-workers the bite marks that covered the backs of his hands from Mark’s aggressive frustration.
By the time Mark was 2 years old, strangers were coming and going in the Vismara family’s home to provide treatment. The standard then was ABA—applied behavioral analysis—a strategy based on continuously rewarding appropriate behavior. The recommendation was for 35 hours of treatment a week; so figuring more had to be better, Mark had 50. Mark and his family traveled to Santa Barbara for treatment and tried an array of regimens, including dietary interventions and nutritional supplements, physical and occupational therapy, extensive medical evaluations and consultations with specialists, video monitoring and hospitalizations for assessments.
Vismara wanted more than a roulette spin of unproven treatments.[page]
He wanted answers.
Chuck Gardner first met Vismara at an autism conference in 1997. “He shows up wearing these blue scrubs and a white coat. His hair was all askew; he looked like the doctor in that Young Frankenstein movie,” recalled Gardner, a Sacramento building contractor whose autistic son, Chas, is a year older than Mark. “He was very energetic—he jumped right on the bandwagon.”
When Chas was diagnosed 13 years ago, doctors told the Gardners to find an institution for him and get on with their lives. “That was not the right answer,” Gardner said.
Gardner, too, wanted a cure, and he’d been trying to convince the UC Davis School of Medicine to get to work on finding a fix for autism. That’s it, Vismara thought, that’s the answer: Bring the full force of medical science to the problem and they’d see autism tamed just as he’d seen the advances pile one on top of another for treatment of heart disease. But Gardner didn’t think the university took his idea very seriously; they told him to come back when he had $5 million.
Vismara said: “Let’s get on it.”
Soon, five powerful Sacramento dads of autistic sons had taken the task on: Gardner; Vismara; Rick Hayes, a senior investment officer for CalPERS; Rick Rollens, secretary of the California Senate; and Steve Beneto, a West Sacramento trucking magnate. The thing about these straight-talking men—who would become known as the “Founding Fathers” of the MIND Institute—is that they, like their autistic sons, are not only uncommonly persistent, they’re also incapable of taking “no” for an answer.
It took the men less than a year to raise more than $6 million and convince the UC Davis School of Medicine to sponsor and house the MIND Institute to study familial dyslexia, autism, Tourette’s syndrome and other neurodevelopmental disorders, evaluate drug and cognitive therapies, and establish a novel autism-education outreach and brain library foundation.
Each of the dads brought his own talents to bear in turning the MIND Institute into a reality. Vismara’s was convincing some of Sacramento’s most prominent citizens to contribute. Getting these people onboard early, according to the Institute’s executive director Dr. Robert Hendren, was critical for demonstrating that it wasn’t “just some harebrained idea.”
Vismara turned first to his longtime friend Angelo Tsakopoulos, a leading Sacramento housing and commercial developer. The two men are so close that Tsakopoulos was the first outsider Vismara told of Mark’s diagnosis. And just as then, his response was, “We’re going to take care of this.” Tsakopoulos—who suffers from dyslexia—kicked in $500,000, got his brother, George, to make a contribution and brought in other donations. Vismara doesn’t mention it, but he put in $250,000 of his own money.
During an office visit, Claire Massey told “Dr. Lou” she wanted to contribute. That added another $1 million. Rollens worked the Legislature to secure funding. John Burton, then Senate president pro tem, pushed though a state appropriation of $36 million to help jump-start the project, lending what Hendren calls “important credibility.”
Telling these stories is emotional for Vismara, when he talks about his gratitude to these donors and to his son: “I guess that’s one of the lessons I’ve learned from Mark is the spirit of generosity and the kindness of people.”
People who know Vismara talk of his big heart and selflessness. Burton called him “a goddamned saint—he’s one of the world’s noble people.” Barbara Firestone, president and CEO of The Help Group and vice chairwoman of the California Legislative Blue Ribbon Commission on Autism, seconds Burton’s description and calls Vismara “a heroic man.”
Vismara remains uncomfortable with the focus on his contributions. Instead, in telling his own personal story, he talks of the sacrifices and hard work of his family, and frequently points out that it took the support of the entire community of parents, university, government and others to launch the MIND Institute and turn it into one of the world’s pre-eminent research centers in the space of less than 10 years.
Gardner’s pragmatism shows in his assessment of what they achieved: “It was the right time and the right group of people with the right purpose.”
“You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out.” That was conservative radio talk-show host Michael Savage ranting this summer about a disorder he claimed is a “fraud” and “racket.” “What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron,’” he harangued his 8 million listeners. (Burton dismisses Savage “as one of the world’s great assholes.”)[page]
Because public awareness of autism is higher today than a decade ago, Savage’s rant set off a firestorm of outrage. Many took aim at getting him off the air. But it points to a truth about the disease. Even though science has acquitted parents of causing the disorder, autism still carries a stigma. The disorder is now understood to be a brain dysfunction that some kids are born with and others may develop in the first years of life. So for researchers like Dr. Laurie Vismara, an educational psychologist on the faculty at the MIND Institute and Lou Vismara’s daughter, Savage’s backsliding to blame the parents was heartbreaking.
“We have had so much focus and so much research into changing that perspective, and we still have buffoons,” she said.
For the past decade at the UC Davis MIND Institute, some of the country’s best minds have been using the tools and technologies of medicine to attack the “public-health crisis of autism,” as the news media have labeled the massive increase in prevalence of the disorder seen in the United States in recent years. Instead of one in 10,000 children believed to fall victim to autism in Vismara’s medical school days 30 years ago, today it’s accepted that the malady affects 1 in every 150 American children, or almost 1 in 94 boys, among whom the condition is four times more prevalent than in girls, according to the most recent data from the Centers for Disease Control and Prevention.
While some of the increased incidence can be attributed to heightened awareness, improved diagnostic tools and reclassification of other conditions under the broad category of autism, evidence suggests that the astonishing rise is a true increase. Research continues to identify the reasons behind the increases, but some theories hold that interactions between genetics and environmental toxins that were not so prevalent decades ago may be responsible. Autism’s cost, which is borne by families, public and private institutions, is huge: The Autism Society of America estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, with an annual cost nationally of nearly $90 billion.
Autism doesn’t look the same in all cases. It includes wide variation in difficulty with language, social interaction and behavior. Tantrums, aggression or self-injurious behavior are common. In some cases, it comes with seizures or digestive disorders; in others, savant genius or mental retardation. In still others, only some components are present—for example, those with the high-functioning Asperger’s form of autism who suffer difficulties with social relationships may not have problems with language and rigid or repetitive behaviors.
Work on distinguishing among types of autism holds promise for not only improving treatment but also for approaching a cure. It’s the same way that once medicine began looking at cancer in its various types—lung, breast, skin—cures started to emerge that were impossible to discover in the larger picture of “cancer.” That’s why Gardner said the real impact of the MIND Institute’s work over the past decade has been to change “the autism paradigm from wondering if it’s curable to asking ‘How do we cure it?’”
Laurie Vismara explains how this works to improve treatment: “We’re fine-tuning our questions. At first we were asking, ‘What’s the best approach?’ Now we’re asking, ‘Which approach is right for this particular child?’”
Currently, the MIND Institute’s 250 employees are working on 65 research studies. Although it is still partially funded by the state, 85 percent of the money that keeps it going comes from grants and private philanthropy. The Institute is an international, multidisciplinary research organization, housed in an innovative building with an open design that encourages researchers from a variety of specialties to interact. It was designed for kids with autism, employing earth tones throughout, and other details, like nonflickering lights to reduce environmental stimulation that’s challenging for these children. Hendren calls it a building with “really good karma,” noting that “there was something really special about the way the Institute was founded.”
Since they began working 10 years ago, the Institute’s researchers have made major advances in being able to recognize autism earlier, coming closer to understanding the causes of the disorder and approaching identification of autism’s biomarkers.
“Where we’re really leading the field is in developing new ideas and a new characterization of autism based on gene-environment interactions mediated by the immune system,” Hendren said. “We started on that line of research early on, which the mainstream didn’t think had value, and we were right.”
The Institute’s ambitious Autism Phenome Project, analyzing data from 1,800 children and families over five to eight years, is the largest and most comprehensive assessment of children with autism ever attempted, and it promises to change the way autism is defined, diagnosed and treated.
“When I was in medical school a hundred years ago, all we could do was slice open the brain, say here’s the parietal lobe, here’s the thalamus, label it and look at gross structural things,” Vismara said. “We now have the scientific tools and the research to understand how autism works in the brain from a neurobiologic basis as well as a cellular and genetic basis, and how these things interact with environmental factors.”
Vismara’s excitement grows as he talks about how the young researchers at MIND Institute—including his daughter Laurie—have the most modern tools and technology at their fingertips to attack autism. Gradually, he winds down and wistfully acknowledges that it’s all just not fast enough.
All his life, Vismara believed that hard work and persistence could overcome any obstacle or hardship. His distant and domineering immigrant father—Vismara came to the United States from Italy at age 7—pushed him hard. Though he became a classic overachiever, Vismara insists no victory came easy. When he played violin with the San Diego Symphony at age 14, it was only after nine years of practicing three and four hours every day. When he skipped a grade in high school, it was the result of hard work rather than exceptional smarts. Even earning his undergraduate degree from Stanford University wasn’t easy.
But no amount of hard work and perseverance on his part could cure Mark.[page]
“There was absolutely no doubt in my mind that autism was just another challenge that we would overcome and that Mark would be cured,” Vismara said. “It’s the most difficult thing I’ve ever dealt with in my life. It’s very emotional, and even now it’s very, very painful.
“Life is bittersweet. The reality is that these advances are going to help other kids, which I’m very grateful for, but they’re not going to help my son. And that’s life.”
Over the years, Mark’s behaviors have improved significantly. Today, at 15, he still has occasional tantrums, but they can be redirected. He seems much happier than when he was years younger, Vismara said. Mark can be affectionate, cuddling his father’s shoulder, and he has the beginnings of relationships where friends enjoy each other’s company or share activities. Without the ability to communicate with language when therapy first began, now Mark can let his needs and wants known. Sometimes it’s only a single word, sometimes it’s a word or phrase repeated over and over as if it’s somehow stuck in his brain, like a needle on a vinyl record. Mark also uses speech to get a rise: “I want doughnuts!” he’ll insist, knowing he can’t have doughnuts, Vismara explained, clearly amused by his son’s sense of humor. Mark also has his own private curse words: “Mud,” he’ll say. “Bread.” He pushes the word out harsh and deep to express his anger.
Like his father, he likes to listen to the same music over and over and can get fixated on other activities, like playing with trains. Also like his dad, he loves to run and walk.
“He’s a handsome, well-coordinated guy,” Vismara said. “He loves to swim. He’s like a little fish—like a big fish. He’s as tall as I am. He wears size 10 1/2 shoes. He weighs 142 pounds. His voice is changing.”
Mark is also one of those fortunate enough to sometimes enjoy the environment—something that’s typically highly challenging for people with autism. Vismara’s own pleasure was obvious as he told of seeing Mark’s delight when a pod of dolphins swam past as he stood knee-deep in the ocean at Santa Barbara on one recent day.
While Mark has made progress, he will not be cured. Accepting that truth a decade ago steeled Vismara’s reserve to learn everything he could, do everything he can to make life better—not just for Mark, but also for other parents’ children with autism and other developmental disabilities. It put purpose into his goal-driven work life.
At first, Vismara didn’t intend to change careers. Caring for Mark didn’t work with his 80-hour-a-week workaholism as a cardiologist. During a sabbatical from his practice, he served as community outreach director for the MIND Institute. Before long, he’d moved into politics, serving the past eight years as policy consultant to the two most recent leaders of California’s Senate—John Burton and Don Perata.
Burton brought Vismara to the Legislature, and he credits his presence in the Capitol with creating a deep awareness of autism. But long before he knew Vismara, Burton himself had a hand in pushing California out ahead of the other states in the country, through a 1974 bill he authored that mandated education for autistic pupils. It was by chance that Burton even learned about autism. Sen. Barbara Boxer, at the time on Burton’s staff, had insisted he attend a mental-health event in Marin. There he met Kimberly Gunz, who told him about her autistic daughter. Burton listened. When she called, he got the ball rolling on the bill, and his continuing interest eventually led to his championing funding for the MIND Institute.
Vismara has worked hard in his classic high-energy style on a variety of health-care issues for the two Senate presidents pro tem. A bipartisan Blue Ribbon Commission on Autism recently wrapped up its work on identifying gaps in programs, services and funding for autism. The commission’s recommendations translated into eight bills—seven of which were on their way at the end of summer to the governor’s desk—that Firestone characterizes as an “agenda of hope” for autism.
All of it, Perata said, “was driven by Lou’s personality and commitment.” Firestone knows that the legislation, which features health-plan coverage for autism, better coordination of services, and pilot studies to identify the best methods for identifying, assessing and treating children with autism, isn’t enough. “But it gives a definition to change,” she said. “I can’t tell you what it means to be able to tell parents we’re in a time of moving forward.”
As autism research continues and support of its victims broadens, tens of thousands of autistic children are nearing adulthood, and their parent caregivers are aging. Only 9 percent of Californians with autism are living independently in the community. Nearly 77,000 people with developmental or intellectual disabilities are living with primary caregivers over the age of 60.
Vismara worries about the impending “aging out” crisis. But he’s got an idea. It came to him when thinking about what someone told him many years ago: “Everyone needs a home, a job and a friend.” The idea is to build a mixed community, where people with disabilities like autism live and work alongside those without disabilities. Tsakopoulos is onboard—he called it “a fabulous idea”—and mentioned the idea of training residents to grow and sell organic produce to support themselves in a supportive and protective community.
“There is no such project in America of major size,” Tsakopoulos said. “We have several projects we’re trying to see if we can tweak and make them work.”
Vismara’s “a big-thinking kind of guy,” Gardner said—the kind of guy who, when he latches on to something, will “worry you to death until you get it fixed.”
What’ll happen to these kids when they become adults? Who will take care of them? It’d be a good bet to keep an eye on Vismara, a long-distance runner for many years, who likens the battle against autism to running a marathon: “It’s not how quickly you start but how effectively you finish. We’re still in the race, we haven’t sprained our ankles or taken off our shoes, we’re still moving forward. That’s what life is all about.”