Bookshelf
A Brighter Future
Bryan Jepson’s recent book challenges doctors—and parents—to seek new ways to treat autism.
by Deborah Moeller
Bryan Jepson BA’91 MD’95 didn’t start his career as a physician trying to change people’s thinking about autism. After receiving his medical degree at the University of Utah, he became an emergency room physician and started a family. But in 2001, the circumstances of his life set him on an unexpected course.
That year, Jepson’s second son was diagnosed with autism. What Jepson learned in the wake of that diagnosis, he says, forced him out of his “comfort zone” as a physician. He describes his story, his findings, and more in his recent book Changing the Course of Autism: A Scientific Approach for Parents and Physicians (Sentient Publications, July 2007).
In his introduction, Jepson describes the “bleak prognosis” doctors gave his son. Bryan and his wife, Laurie, were told that they could do little to improve their boy’s condition and would likely have to institutionalize him some day. While Bryan accepted the doctor’s prognosis, Laurie did not: she started investigating the treatments available for autism.
As Laurie searched, Bryan recalls, she began to find compelling information that led her to question some mainstream assumptions about autism, and Bryan soon found himself drawn into exploring the research as well. What he found changed his preconceived notions about autism and started him on a journey that has helped educate parents and physicians throughout the United States—and improved the lives of thousands of autistic children.
Bryan and Laurie initially founded and directed the Children’s Biomedical Center of Utah, a nonprofit organization dedicated to raising awareness about autism and other childhood developmental disorders throughout the Intermountain West. Today, Bryan Jepson is the director of medical services at Thoughtful House Center for Children in Austin, Texas, a multidisciplinary clinic dedicated to caring for children with autism and related conditions.
Jepson and his colleagues regard autism not as an untreatable brain disorder but as a systemic disease that affects multiple systems in the body, including the brain, the immune system, and the gastrointestinal system. And according to Jepson, their approach works. “Almost all the kids we’re treating are improving,” he says. Some of them are even able to drop the diagnosis of autism, meaning that most observers would not be able to distinguish these children from typical children.
This approach breaks from traditional definitions of autism as a brain disorder. The Autism Society of America states on its Web site that “Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills.” The American Academy of Pediatrics (AAP) refers to autism as a “brain-based disorder.”
Autism was first identified in 1943 by physician Leo Kanner, who worked with a group of 11 children, all of whom displayed deficiencies in typical language and social development. After a period in the 1950s and ’60s when many purported experts blamed autism on what the noted child psychologist Bruno Bettleheim described as cold and detached “refrigerator mothers,” the medical establishment began to treat autism as a neurological disorder, which, like Down syndrome, had its origin in genetics. And until the 1980s, Jepson notes, most data showed that autism was rare: in the United States no more than five in 10,000 people were diagnosed with the disorder.
Today, however, research shows that the condition is not rare: a 2007 study by the Centers for Disease Control (CDC) estimates that roughly one in 150 American children has some form of Autism Spectrum Disorder (ASD), and that in Utah, it’s one child in 133—the third-highest rate among the 14 states studied, and a rate 20 times higher than was estimated in a 1980s study. Part of the apparent rise may be due to changes in diagnosis—that is, people formerly undiagnosed or labeled with some other form of developmental delay are now being diagnosed with ASD. But the sharply rising number of children diagnosed with autism leads some people to blame vaccines or other environmental factors as the cause, although most medical institutions, including the AAP and CDC, insist that no persuasive link exists between vaccines and autism.
Jepson’s meticulously researched book tackles the issue of the autism upsurge head on, but it doesn’t point the finger at any one culprit. Jepson acknowledges that autism does seem to have a major genetic component and highlights research that shows higher rates of autism in families with auto-immune diseases. But, he notes, “There’s no such thing as a genetic epidemic.” He believes other factors influence the development of autism in individuals who are genetically susceptible to the disease, and that those factors may include vaccines.
After delving deeply into the research, Jepson says, “I realized this theory of a vaccine-autism link . was based on real science with a strong foundation of biological plausibility.”
No study as yet proves a causal relationship, and many studies refute the connection (including some work originating at the University of Utah; see link at bottom). And because of the mainstream medical community’s long-established position on autism’s nature and causes, Jepson maintains that many physicians don’t have a lot of new information for parents when they diagnose children with autism. “Most doctors have stayed within their comfort zone—myself included,” he says. “Personal experience pushed me out of my comfort zone . [I discovered] that much of what we ’know’ about autism is completely wrong.”
Jepson points out that there’s a big difference between the tasks required of scientists and physicians: “True scientists should be questioning dogma. As a physician, you’re often penalized for that.” He maintains that physicians don’t have much incentive to review research and try new approaches; in fact, their incentive is to provide services based on the standard of care accepted in their field. If they deviate from that standard, they can open themselves up to lawsuits. Unfortunately, according to Jepson, “The standard of care in autism is to do nothing.”
Even today, he says, parents still hear the same dismal prognosis from their pediatricians that his son received six years ago. Because autism has no “cure,” many pediatricians remain unaware of the numerous tested therapies available for children with autism, even though organizations like the AAP have extensive materials that outline those therapies. The climate of knowledge is changing, Jepson says, “but it still hasn’t quite taken off.”
“The thing that’s going to convince doctors is more research,” Jepson argues, noting that much of the research on autism by geneticists has yielded frustratingly vague findings (there is, as yet, no “autism gene”), while research by immunologists and gastroenterologists has shown exciting and persuasive information on mitigating the systemic problems many autistic patients experience.
Both Jepson’s work and his book focus on those systemic problems and how to treat them. Jepson has strong views about autism’s causes, but when it comes to patients, he’s much more interested in helping children get the treatment they need than in proving a point. He fully supports the educational therapies that the AAP recommends but argues that many children need medical intervention as well, and he helps them get it.
For example, he explains, many people with autism have gastrointestinal problems that cause them discomfort or pain, but they may not be able to articulate their symptoms. To help them be more physically comfortable and to improve their learning potential, Jepson and his colleagues suggest changes in diet, the addition of dietary supplements, and, in extreme cases, medical procedures. “We want [these treatments] to give their brains the best opportunity to learn,” Jepson says.
In many cases, it’s parents rather than physicians who seek out
the resources available at Thoughtful House. “Doctors come with
more strongly preconceived ideas about autism,” says Jepson. “Parents
tend to look at things more on the surface and ask, ‘Does
it make sense?’ ”
One of those parents is Katie Wright, the mother of a boy with autism and the daughter of the founders of Autism Speaks, a national advocacy organization. In the foreword to Jepson’s book, Wright recounts the heartbreaking story of her son’s slide into autism. In addition to a regression in language and social skills, he experienced severe, painful bowel problems. She took him to numerous specialists over the course of two years, but none of them were able to find a cause. Finally she found a doctor (now at Thoughtful House) who did a thorough scope of her son’s intestines and diagnosed him with colitis (a condition she says is not uncommon in people with autism). Now that he is receiving the right therapy, he is improving significantly and is no longer in constant pain.
Jepson hopes Changing the Course of Autism will help other parents get the therapies they need for their children. “My intention was to help parents have a tool to take to their doctors.” He compiled large chunks of relevant research and evidence in his book to save physicians the time required to do it themselves. “This book is my attempt to break into the system, to show doctors that this is mainstream medicine.”
With hundreds of thousands of American children now diagnosed as autistic and more being identified each day, Jepson warns that we need to be aggressive about getting thorough and appropriate treatments for them, requiring a national effort on all fronts. “Our government and our society need to realize that it’s a humongous investment in the future,” he says.
When it comes to his patients, though, Jepson’s outlook is hardly dire. “The kids that I’m treating are improving—I wouldn’t be doing this if they weren’t. It shows me that we’re on the right track. And I think the future’s bright.”
— Deborah Moeller BA’95 MA’04 is a senior editor with McKinnon-Mulherin and the mother of a 4-year-old son with ASD and a 1-year-old daughter.
To learn more about the research on autism being conducted at the University of Utah, visit http://www.utahautismfoundation.org/uofu.html.
|
