Why M.I.N.D. Matters
How a group of determined parents did the impossible and helped form
one of the leading autism research facilities in the country.
By Gary Delsohn. Thanks to Rick Rollens. Printed in Southwest Airlines Magazine
[Continuation picks up after shaded text.]
Chuck Gardner will never forget what his
good friend Rick Rollens told him after Gardner asked for advice
about how to approach officials at the University of California, Davis,
with his dream of creating a world-class research and treat- ment
center for autism.
“You’re wasting your time,” Rollens said
during that 1996 conversation. “It’s never going to happen. I’ve worked
with the UC system, and it will never happen in our lifetime. It
takes them 10 years to decide whether to build a parking garage."
Both men — Gardner, who is a business
owner in Sacramento, and Rollens, then secretary of the California
Senate — had young sons who have the often-debilitating brain malady
known as autism. The two men and their wives had been everywhere
searching for help. They were long past desperate for something,
anything, that could provide hope or relief.
It’s a good thing Gardner didn’t take
Rollens’ pessimism to heart. He says now that he didn’t know
better at the time. That four years of sleepless nights while he and
his wife, Sarah, kept constant vigil over their son, Chas, a handsome
boy with no verbal skills but an uncanny ability to hurt himself
and turn their household upside down, made him crazy enough to think
even the impossible was possible.
With the help of another friend, Gardner
got his meeting with officials at the UC Davis Medical Center, which is
on the old State Fair grounds in Sacramento. Even though they
established some ground rules that seemed impossible to meet — like
come see us again when you’ve raised $5 million in private funds —
Gardner remained undeterred. As a result, the Medical
Center campus today boasts what experts say is the leading autism
research facility in the nation, if not the world.
It’s housed in a gorgeous 100,000
square-foot, state-of-the-art building that cost $42 million to build
and is designed so thoughtfully that The Wall Street Journal wrote a
separate story about its architeture. It ran under the sub headline
“Can a Building Help Cure a Disease?” Officially open since 2003, just
seven years after Gardner and Rollens first talked about the pipe dream
of an idea, the center boasts a full-time staff of 260 and has already
conducted several groundbreaking research projects. The center’s most
recent undertaking: an ambitious autism study that is expected to
radically change how the dis- ease is diagnosed and treated. All
because a small group of parents demanded action and took matters into
their own hands when they weren’t satisfied with what they were getting.
The story of how Gardner, Rollens,
and a small cadre of extraordinarily frustrated but determined
Sacramento parents achieved their quixotic goal is almost as dramatic
as the groundbreaking research being conducted at the facility. It’s
called the M.I.N.D. Institute, for Medical Investigation of Neuro-
developmental Disorders. Even the federal government says it represents
the best hope anywhere for a cure and answers about how to prevent and
treat this perplexing brain disorder. It wasn’t that long ago, after
all, that autism was believed to be caused by so-called refrigerator
mothers, too cold to properly nurture and develop their children. The
common advice from doctors to parents was find a place to
institutionalize your child. You’ll never reach him.
Now we at least know it’s a brain
malady, that some children are born with it and others contract it
somehow in their first few years of life, maybe by exposure to infant
vaccines preserved with the mercury-based substance known as
thimerosal. And there are treatments that help. Chas Gardner goes to a
school for kids with autism that his father and two partners built and
co-own. He’s learning independent living skills, such as how to order
food at McDonald’s and motion toward things he wants. Just a few years
ago, this was a disease believed to affect one in 10,000 kids. Now,
according to the federal Centers for Disease Control and Prevention, it
afflicts as many as one in 166 children who have some degree of autism
spectrum disorder. The CDC estimates that if 4 million children are
born in the United States each year, about 24,000 will be diagnosed
with autism. Because most of the known patients with autism are under
the age of 18, many experts say this is a medical and social time bomb
as these kids get older and become far more dependent on society at
large to care for them.
“I would say that the M.I.N.D. Institute
is really the hope for people with autism,” Dr. Thomas Insel, director
of the National Institute of Mental Health, said in a recent interview.
“What parents need most of all is hope for a breakthrough, and this is
the place in the country that is totally committed to finding that
breakthrough. It’s so impressive to learn that families got this
facility started because they were so intent on trying to solve the
problem with more research. They’ve created a place that is really a
focal point of scientific effort, almost a Manhattan Project, to try to
understand the reason for this disease, how to prevent it, and how to
treat it better."
Gardner, Rollens, and the four other men
known as the center’s “Founding Fathers” know work at the M.I.N.D.
Institute may come too late to make a dramatic impact on the lives of
their sons, now young teenagers. One founder, trucking company owner
Steve T. Beneto, has a son with autism in his 40s who has been living
away from home in an around-the-clock care center for years. But the
families remain fully engaged in the institute’s work, mission, and
future. Gardner is running the center’s new fund-raising drive.
“You never know if something is going to
come out of it that will help Chas,” Sarah Gardner, a Sacramento
television news anchorwoman and Chuck’s wife, says with a sigh. “But we
have so many friends who have kids with autism. No child or family
should suffer like this. The reality is that every day that passes,
Chas gets further away from a cure. But we’re going to continue to be
unrealistic and think there’s something out there that will help him.
We’re prepared to take that hope to our grave if that’s how it goes."
The project started with Chuck Gardner’s
frustration and his ability to network with other fathers who saw their
families strain and creak under the intense pressure of having a child
with autism. For some reason scientists don’t yet understand, autism is
far more prevalent in boys than girls. Boys have it more than girls by
a ratio of four-to-one.
For the most part, the moms of the boys
were home dealing with their tantrums, trying to get them to eat,
learn, sit still, and not harm themselves or their siblings while the
dads were out scouring for help. “We’re dads,” Rollens has said many
times. “When something goes wrong, we’re supposed to try and fix
things."
Gardner was stunned to learn that
so-called experts at one clinic where autism was treated didn’t know
what scientists at another center were working on. They often didn’t
even know about studies and facts Gardner and some of his friends who
have children with autism had found on their own. Chas had been
diagnosed at about 2 and was 4 when Gardner had his meeting with the
university. At the time, he and his wife were very frustrated.
Even as a baby, Chas hated to be held.
He didn’t talk or look directly at someone who was talking to him.
Almost anything could set off wild, often violent tantrums. A few years
ago, while Chuck was sitting on the fireplace mantel watching Chas,
Chuck turned away and Chas stuck his leg into the burning fire. His
pajamas ignited, and he suffered second-degree burns. When he eats,
Chas likes to cram whatever he has in front of him into his mouth all
at once because he craves the sensation of a full mouth, making his
parents experts on the Heimlich maneuver. When his younger sister,
Ginny, wants to have a friend over to play, the logistics can be nearly
impossible.
“People say to us all the time, ‘Isn’t
it time you found a place for him and had him institutionalized?’ ”
Sarah says. “That’s all well and good. You try to pack his bags and put
his favorite things in there."
At a conference he attended, Chuck
mentioned to Dr. Louis Vismara, a prominent (and now retired)
Sacramento cardiologist whose now-13-year-old son Mark has autism, what
the university officials had told him about the need to raise $5
million to have even a prayer of getting anything serious started at
UC. Even then, all they promised was a couple of endowed professor’s
chairs at the medical school, nothing like a full-blown center devot-
ed primarily to autism.
Vismara had been practicing medicine in
Sacramento for years, and he had quite a few wealthy patients. Among
them was Angelo Tsakopoulos, a major California developer. Tsakopoulos,
who still has a hard time with his own dyslexia, couldn’t get on board
fast enough.
“The logic that we spend something like
$10 billion to $12 billion a year to take care of people with autism
and only $50 million a year to do research is mind-boggling to me,”
Tsakopoulos says. “I told Lou at the time it’s like having a building
with a roof that is leaking and you spend a ton of money on buckets
when you need to fix the roof. To really learn about this disease and
why it affects people as it does, we need to do the research."
Tsakopoulos kicked in $500,000. So did
Beneto. Vismara put in $250,000. Another Vismara patient, Claire
Massey, and her family put in $1 million at the start and recently gave
the institute another $1 million. Rollens used his influence in the
Legislature to get a bill passed appropriating $2 million toward the
establishment of a research center then called Project Hope. In 1999,
then-Governor Gray Davis, who was taken with the story of Rollens’
struggles to find relief for his son, signed legislation appropriating
$40 million to help build the facility. The Medical Center donated
several acres of land and added more than $20 million to the pot. In
2003, the M.I.N.D. Institute, which also includes a 27,000-square-foot
lab that is the envy of other departments at the Medical Center, was
formally christened. It has an annual budget of $18.9 million, which
includes $3.8 million from the state.
In addition to how it was created, the
center is unique because it freely mixes clinical and research space
under one roof with open, flowing design. The center has one main
entrance where doctors, psychologists, researchers, and administrators
all enter before going off to their individual work stations. Wide
stairways invite conversation. The open layout allows occupants to see
one another. The soothing earthtones and dramatic artwork commissioned
from artists with autism make the center an inviting place. It’s a
dramatic departure from the dingy, private clinics most of these
parents had been accustomed to. Parents desperate for hope can
literally see the promise of science being applied to their own
children. Because it is part of the UC Davis Health System, which also
has one of the leading veterinary medicine schools in the country, the
M.I.N.D. Institute, which has more than 3,000 clinical research visits
each year, is able to take advantage of the university’s vast array of
resources. On one winter morning when a reporter was being shown
around, researchers were in the lab dissecting monkey brains to learn
what goes into a primate’s memory system during development.
“It’s kind of exciting for us because of
the phenomenon of infantile amnesia,” Jeff Bennett, a lab manager, says
as he sorts through some tissue slides. “We think there could be an
interesting change that happens during development that can help shed
light on some of these disorders."
The most ambitious project undertaken at
the M.I.N.D. Institute and arguably the most far-reaching autism study
done any- where is what’s known as the Autism Phenome Project.
Institute officials describe it as a “longitudinal study that aims to
distinguish among different subgroups (or phenotypes) of autism and
will link these subgroups with distinct patterns of behav- ior and
biological changes. Assessments include family history, environmental
exposures, genomics, behavior, brain struc- ture and function,
immunology, as well as protein profiles.” The aim of the project is to
finally differentiate between the different types of autism and how
they are caused so diagnosis and treatment can be tailored to each
individual.
“At the moment, any treatment that gets
used — it gets used for all kids with autism,” says David G. Amaral, a
professor of psychiatry and behavioral sciences at the UC Davis School
of Medicine and research director at the M.I.N.D. Institute. “Some kids
respond well and some don’t, but we don’t know why. This is critical
because when you have a developing child there is a window of
opportunity when treatment is most valuable. You don’t want to guess.
You want to get the best possible treatment at the best possible time."
That particular window has likely closed
for Chas, Mark Vismara, and Russell Rollens, who was on the cover of
News- week in July 2000 for an article on what the magazine called
“Mindblindness,” another name for the disorder. Chas’ parents admit
they try not to let their minds wander to thoughts about who’ll care
for Chas when they’re not around. They’re too busy with the day-to-day.
“We can cry and worry about the future
when we’re older,” Sarah Gardner says. “We don’t allow ourselves to
ever go over to any kind of dark side and just worry. We don’t have the
time or luxury for that, and once you do, you may never find a way out.
One thing I do know. Chas is not going to pass through this world
without having an impact. He may not be the pro baseball player Chuck
dreamed of when he was born, but because of his involvement and
participation in this research, he’s going to have an impact. We will
find a cure, and Chas will have played a role in that."
Gary Delsohn was a reporter for the Sacramento Bee for 16 years.
If you would like the PDF of this article with pictures e mail Nancale@aol.com with that request.
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