Jim and Louise Laidler lost their faith on a trip to Disneyland in 2002, while having breakfast in Goofy’s Kitchen.
The Laidlers are doctors, and their sons, Ben and David, had been diagnosed with autism. For several years, on the advice of doctors and parents, the Laidlers treated their children with a wide range of alternative medicine techniques designed to stem or even reverse autistic symptoms. They gave their boys regular supplements of vitamin B12, magnesium, and dimethylglycine. They kept David’s diet free of gluten and casein, heeding the advice of experts who warned that even the smallest bit of gluten would cause severe regression. They administered intravenous infusions of secretin, said to have astonishing therapeutic effects for a high percentage of autistic children.
Using substances known as chelating agents, the Laidlers also worked to rid Ben and David of heavy metals thought to be accumulated through vaccines and environmental pollutants. With a PhD in biology as well as his MD, Jim Laidler had become an expert on chelation, speaking nationally and internationally about it at conferences dedicated to autism and alternative approaches.
But by the time the family took a trip to Disneyland, Jim was starting to doubt the attitude fostered at conferences like Defeat Autism Now!, where he first learned about chelation. He cringed when he heard of parents mortgaging their homes to pay for wildly expensive and unproven treatments. Alarms went off when parents and doctors would advocate dangerous protocols—hyper-dosing with vitamin A, using extreme forms of chelation. When he spoke out against them, a prominent conference organizer took him aside and warned him never to criticize anyone’s approach, no matter how crazy or dangerous it seemed.
It was in the grip of these doubts when, inside Goofy’s Kitchen, Jim and Louise returned to their table from the buffet and noticed 6-year-old David hadn’t come with them. They saw him standing at the buffet, devouring a waffle. The Laidlers feared the worst. “We’d been told that the slightest smidgen of gluten would crash him,” Jim says. “It was absolutely devastating to watch.” But by the end of the vacation, they realized David was fine. Nothing happened.
When they returned home, the Laidlers took David off his restrictive diet, and he continued to improve—rapidly. Louise stopped Ben’s supplement regimen—without telling Jim—and Ben’s behavior remained the same. Then, after months of soul-searching, Jim Laider took to the internet to announce his “de-conversion” from alternative medicine—a kind of penance, but also a warning to others. “I had this guilt to expunge,” Jim says. “I helped to promote this nonsense, and I didn’t want other people to fall for it like I did.”
The Laidlers’ story is a microcosm of the changing debate over so-called alternative medicine and its cousin, integrative medicine. In 2007, Americans spent $2.9 billion on homeopathic medicine, a treatment based on the belief that minuscule amounts of what causes symptoms in a healthy person will alleviate symptoms in someone who is ill. From nutritional supplements to energy healing to acupuncture, treatments outside the medical mainstream are big business. But the vast majority of scientists find much of alternative medicine highly problematic.
The supposed mechanisms of energy healing, homeopathy, and acupuncture are unscientific and violate basic laws of physics and chemistry. Other alternative treatments, including many nutritional supplements, are unproven, unregulated, and occasionally dangerous. This month, the fight came to a very public head when a group of doctors sent an open letter to Columbia University, demanding the school remove Dr. Mehmet Oz, who has used his syndicated TV show to promote integrative medicine, including nutritional regimens, homeopathy, and reiki—a form of energy healing that claims to use “universal life force energy” to “detoxify the body” and “increase the vibrational frequency on physical, mental, emotional and spiritual levels.” But at the same time, integrative medicine has pushed such techniques into the mainstream.
After celebrity doctor Andrew Weil pioneered the idea at the University of Arizona in the late ’90s, 23 medical schools now offer residencies in integrative medicine. There are now integrative medicine centers and programs in many of the nation’s top hospitals and universities, including the Cleveland Clinic, the Mayo Clinic, Duke, and Johns Hopkins. In 2013, the American Board of Physician Specialties added integrative medicine alongside more traditional board certifications such as surgery and dermatology (there were so many applicants that the first certification exam had to be delayed). And last year, the National Center for Complementary and Alternative Medicine—a publicly funded research agency that is part of the National Institute for Health—changed its name to the National Center for Complementary and Integrative Health.
When Jim Laidler became an alt-medicine apostate, proponents of the treatments he criticized went on the attack. He received death threats from parents. It’s an intellectually and emotionally bruising battle no matter which side you’re on, one that today pits not just doctor against layperson, but also doctor against doctor. And as the Laidlers demonstrate, it can pit well-trained doctors against their own psyche. “I was happier because we felt like we were doing something right,” Jim Laidler says of the treatments he gave his sons over the course of so many years. “That’s how the madness begins. You want to believe that it’s working, so you force yourself to see results, and silence the scientific part of your brain.”
The Laidlers’ journey began when Ben was an infant. He wasn’t hitting his milestones. Rolling over, crawling, walking. “I got angry with the baby books,” Louise Laidler recalls. “Whenever your child was supposed to do something, Ben did it one month later.”
Three years later, Louise gave birth to David, and by that time, they could no longer attribute Ben’s issues to normal developmental variation. At 3-and-a-half, his speech consisted largely of echoing. He had coordination issues. He avoided eye contact. “I’d done an internship in pediatrics,” Jim says. “I knew what this looked like. But I didn’t want to bring it up, not even to Louise. You get superstitious, like if you say something it’ll come true.”
Shortly after David’s birth, the family moved from Alaska to Portland, where a new pediatrician referred Ben to a developmental specialist. Anxious and exhausted, Jim and Louise sat in the waiting room while their son underwent a battery of tests. Finally, the doctor called them into his office and gave the diagnosis: autism spectrum disorder.
With autism, mainstream medicine offers no hope of a cure and little in the way of treatment options. Shocked, the Laidlers listened to their doctor explain that Ben might develop normally, or he might be profoundly disabled. Only time would tell. Occupational therapy and speech therapy could help with basic skill acquisition, and the local school district offered some services. But that was all the advice they received.
The entire diagnosis and explanation took no more than 45 minutes. “In the moment of diagnosis, it feels like the death of your hopes and dreams,” Louise says. There’s a quiet grief in her voice, even though two decades have passed. “In a way, it’s even harder than a death, because you can’t mourn and go on,” she says. “You have to figure out how to care for your new child.”
Whenever mainstream medicine has little to offer, other sources offer a dizzying array of options. Call it a market for hope. Autism, ALS, Alzheimer’s, terminal cancer. There’s no shortage of claims that these intractable conditions can be treated using approaches that conventional Western physicians fail to consider.
Loosely categorized as “alternative medicine,” the approaches include nutritional supplements, dietary regimens, detoxification protocols, acupuncture, energy healing, homeopathy, chiropractic, traditional Indian medicine, and whatever else has anecdotal support yet remains unaccepted by the larger scientific community.
Proponents of alternative healing modalities argue that the medical industrial complex willfully ignores natural, holistic approaches to health care, choosing instead to pursue more profitable treatments such as surgery and pharmaceuticals, treating symptoms and ignoring the cause to ensure that patients return for more procedures and prescriptions. New medical paradigms threaten this status quo, these voices say, so universities keep their students ignorant of powerful therapies. There are miraculous treatments available—but only if you’re willing to look outside the hospital.
That’s exactly what Jim and Louise did. Ben was diagnosed in 1997, when Internet resources consisted mainly of online forums where parents traded success stories. It didn’t take long before they started their son on the most popular recommendations: the strict gluten and casein-free diet, the regimented supplements. They also signed him up for an early intervention program through the Portland school system and hired a private speech therapist.
While Ben struggled to improve, David was beating all his milestones. He walked early, talked early, and socialized well. Then, over the course of a month, the gregarious toddler went silent. Stunned, Jim and Louise returned to the developmental specialist, who delivered the same diagnosis. Both their sons were autistic.
“We fell into a deep depression,” Jim remembers. “David was just flying along, our shining boy, and then he lost it.” For the next few months, the Laidlers were numb, interacting with each other only to coordinate caring for the boys, their schedule dominated by treatments, therapy, and further research. Then another parent told Louise about Defeat Autism Now! She decided to attend.
The conference was a festival of alternative medicine, a campground of tents and booths and speakers offering attendees everything from cutting-edge supplements to dolphin therapy. Everyone—parents and presenters alike—swore by their preferred treatment, and countless stories circulated about severely autistic children who instantly turned around on the right protocol.
Louise returned filled with new hopes. At first, Jim was skeptical—“I hadn’t been there. I hadn’t felt the excitement”—but soon, he was hopeful too. They decided to put David and Ben on more supplements. They tried secretin infusions. They attended another DAN! Conference. They came to believe in many other alternative therapies.
Twenty years later, belief in the power of alternative therapies is not uncommon—even at the highest levels of medicine. When the Laidlers first embraced alternative practices, it was largely separate from mainstream hospitals and medical schools, but integrative medicine has changed that.
At Yale, physician and prominent health advocate David Katz practices integrative medicine, aiming to combine acceptance of alternative treatments with scientific rigor and regulation. Katz opposes chelation, along with all non-standard protocols proven to be physically harmful, but he supports being open-minded about many other alternative techniques, including acupuncture, homeopathy, and reiki.
Such open-mindedness, he says, offers a badly needed corrective to a broken medical system. “With internal medicine, once I’ve tried everything the textbooks tell me, I’m done,” he says. “But with integrative medicine, I always have something to try. I never run out of options.”
He contrasts practitioners like himself with conventional doctors who tend to throw up their hands when pharmaceuticals fail, refusing to consider untraditional options that patients might want to pursue. “I think your job isn’t done if the patient isn’t feeling better,” he says. “It’s close-minded to say the only stuff that could work is the stuff we already know works.”
Besides, he says, practices like reiki and homeopathy are relatively harmless. Reiki involves nothing more than laying hands on—or, often, just above—a patient’s body. Homeopathy is essentially the prescription of sugar pills. Even if these treatments really are just theatrical placebos—e.g. real acupuncture works no better than fake acupuncture—why not offer them as an option if patients want them?
Adam Perlman, director of Duke’s Integrative Medicine program, practices a similar type of medicine. “I don’t just want to focus on getting people on the right medication,” he says. “Just because you’ve gotten blood pressure in a normal range doesn’t mean you’ve optimized someone’s vitality. So I also like to focus on open-mindedness to things that fall outside mainstream medicine.”
But in the long run, the Laidlers questioned—and eventually rejected—their initial open-mindedness. And today, despite the claims of added scientific rigor, many experts question the mindset of integrative practitioners like Katz and Perlman.
Steven Novella is a neurologist who, like David Katz, works for Yale Medical School. Though they share an employer, their perspectives on medicine differ drastically. Novella talks a bit like an astronomer who can’t believe his department has hired an astrologer.
“Open-minded is great,” Novella says, before quoting a line popularized by Carl Sagan. “But you don’t want to be so open-minded that your brain falls out. Some things are obviously beyond the realm of plausibility. We can’t just rewrite the physics textbooks to justify some crazy treatment with marginal evidence. Katz won’t admit that. He says: ‘Forget plausibility. That’s just bias.'”
Integrative medicine, Novella argues, presents an ethical dilemma. “We’ve decided in the medical community that it’s deceptive to prescribe placebos. So why would it be okay to send someone to a homeopath who’s prescribing sugar pills?” And he points out that alternative treatments can have far-reaching consequences for the patient’s perception of traditional doctors.
“I know, firsthand, that there are serious downstream negative effects when you refer someone to a naturopath or an acupuncturist,” he explains. “No acupuncturists are up front about the reality of what they do. They’ve got Chinese medical charts with qi and meridians on the walls. And they instill in the patient hostility to science-based medicine and our notion of health and disease.”
In the case of chronic lower back pain, acupuncture might not be the worst treatment option, Novella admits. But that’s only if you forget about how a successful treatment might affect someone’s thought process. “The patient, who is not properly interpreting the placebo effect, is going to be convinced that they feel better because the principles of acupuncture are true. Therefore, when they get their cancer, maybe that’s who they’ll go to first.”
When confronted with the possibility of a troubling diagnosis, people often prefer to avoid hard truths. Novella tells a gut-wrenching story about one of his patients, who had ALS. After the initial diagnosis, the man left the office, unable to cope with the fact that he had an incurable degenerative disease, likely to kill him within five years. He chose to visit a naturopath instead, who had redemptive news: conventional, narrow-minded medicine had misdiagnosed him. It wasn’t ALS, the naturopath said, but rather chronic Lyme disease, which could be treated with holistic, all-natural supplements.
Nearly a year later, badly degenerated, the man was back in Novella’s office. He’d wasted countless hours and thousands of dollars on false hope. Now, he was willing to listen, but with far less time to prepare for the reality of what lay ahead, and a spirit broken by disappointment. Research suggests this is no mere anecdote. Studies out of Norway, Japan, and Korea have reported higher mortality rates and lower quality of life for cancer patients who pursue complementary and alternative medicine.
Like Andrew Weil, David Katz, and other integrative doctors, Novella readily acknowledges flaws in our current healthcare system. There’s not enough government research funding, which means corporations have disproportionate influence on the development of new medications. Overtaxed doctors don’t have enough time with patients, forcing them to deliver difficult diagnoses without taking sufficient time to take to answer questions and provide comfort. Doctors, especially surgeons, often have a needlessly gruff and dismissive bedside manner. Reimbursement tends to reward procedures. The list of shortcomings he provides is endless.
But Novella says that recognizing flaws in our healthcare system doesn’t mean giving up on rigorous standards for medicine.
Novella is particularly perturbed that a degree from a naturopathic college—where there is no agreed upon standard of care—counts towards board certification in integrative medicine. As he points out, naturopaths, like the one who misdiagnosed his patient’s ALS as chronic lyme disease, embrace homeopathy, sometimes as a cure for autism. They are also open to chelation treatment and fear of vaccines. “There’s lots of changes that we need to make,” he acknowledges. “But as Paul Krugman says, when the public believes in magic, it’s springtime for the charlatans.”
British epidemiologist Ben Goldacre believes much the same thing: “Just because there are problems with aircraft design, that doesn’t mean magic carpets really fly,” he writes in his book Bad Pharma. It’s a great line and a good rule for critical thinking about implausible approaches to medicine. But it doesn’t solve the problem of uncertainty and despair. If airplanes are flawed and magic carpets don’t work, then where should patients and doctors seek hope?
Reflecting on his experience, Jim Laidler concluded that false hope was like a drug. Perhaps that’s part of the reason Dr. Oz’s defenders are as fervent as the parents who threatened Jim’s life: some of them can’t face the pangs of withdrawal.
And false hope isn’t just for patients. Doctors—traditional and integrative alike—also can become dependent. No doctor wants to be hope’s executioner, especially when they don’t know how to do it properly. The vast majority of doctors receive no formal training in how to deliver catastrophic news. Most hospitals don’t provide a social worker to take over once parents find out their child has autism. Instead of thinking about what to do when there are no options for a cure, it’s easier, as Katz puts it, to never run out of options.
But curing disease isn’t the only medical option available. Autism experts at the Virginia Institute of Autism say that one of the biggest parts of their job is managing expectations. Emily Callahan, clinical psychologist and director of outpatient therapy, says this can be extremely difficult. “People are looking for a quick, complete solution, an easy solution. A lot of pseudoscientific interventions claim to have quick effects, but we never claim to have those.”
Jim Laidler is an anesthesiologist, and his work involves the same kind of expectation management. “My chronic-pain patients are often referrals,” he says, “and they’ve been led to believe that they can live a life free from pain. The first thing I do is explain that our goal is to manage pain, not eliminate it.”
After Disneyland, the Laidlers were able to apply similar thinking to their own situation. It turns out that withdrawal from false hope has a silver lining: it allows you to start looking for real hope.
As David continued to improve (without exotic treatments), Jim and Louise were forced to confront hard questions about their oldest son. Would Ben ever move out? Who would take care of him when they died? Over many years, they developed a plan. As a child, Jim had lived on a farm, and he remembered how there had always been something for everyone to do, no matter what their age or skill set. He and Louise set up a trust and an inheritance. Then they sought out families with autistic children about Ben’s age, to see if they might be interested in joining together to start a group home.
“This planning—it was a better kind of happiness,” Jim says. “I knew it was real. It was tangible.” The Laidlers found three other families. They bought 17 acres of farmland. Together, the families found a couple to work as caretakers and built a home for their four boys, soon to be adults. At the end of this February, everything was ready. Ben and his three housemates moved into their own home.
“They grow peppers and herbs and sell them to local restaurants,” Jim says proudly. “We hire college students in the area to take them on outings, to bowling, to watch football games, go out to dinner. And we’re making sure it will keep working when we’re gone.”
None of that, he assures me, would ever have happened if he and Louise had continued to hope for an alternative cure. Although the previous regimen of supplements and dietary changes wasn’t physically harmful, it still exacted a heavy toll in financial and mental resources. Had they continued to pursue it, Jim believes, there would have been no time, no money, and no willingness to think long-term. And eventually, their son would be an adult, and they wouldn’t have known what to do. But now there is a plan, and they rest easier knowing that Ben will never have to live in a state-run home or move in with his brother. For the Laidlers, the real alternative was to stop believing in miracles—and start planning for the future.
Alan Levinovitz is an assistant professor of religion at James Madison University. He is the author of The Gluten Lie. Follow him: @alanlevinovitz.