An alternative to autism?
Lack of certainty about the diagnosis leads many families to look outside mainstream medicine
When Shannon Des Roches Rosa’s son Leo was diagnosed with autism in 2003, her world turned upside down. All of her hopes and expectations for their lives disappeared in an instant, and Shannon, a mother of three in California, became intensely depressed. So when she discovered alternative therapies claiming to offer a cure for her son’s disorder, she leapt at them.
Shannon’s reaction is typical of many parents dealing with an autism diagnosis. Uncertain about their child’s future, they turn to therapies that promise change but lack scientific support. These alternative treatments, known as complementary and alternative medicine (CAM), include changes in diet, dietary supplements, and therapies aimed at reducing toxins or correcting presumed immune deficiencies. Doctors are torn on how to counsel these parents – some are dismissive towards families considering alternative treatments, but others are more sympathetic.
“They are looking for something that is going to help them establish some kind of relationship with their child, and it is a very real need on their part,” says Cynthia Riccio, an educational psychologist at Texas A&M University. “It makes them a very vulnerable population. If somebody says ‘spend $2,000 and we will fix your child,’ they will do it.”
Autism consists of a range of disorders that vary in symptoms and severity, but all cases share impairments in communication skills, social development, and other aspects of behavior. Approximately one in every 110 children in the U.S. is diagnosed with an autism spectrum disorder. There is evidence that both genetic and environmental factors contribute to risk for autism, but a comprehensive explanation for its origin has so far eluded the medical community.
Since researchers have yet to pinpoint a definitive cause for autism, there are few effective options for treatment. Most current approaches, such as applied behavior analysis, focus on easing harmful and disruptive behaviors. These interventions can manage the symptoms of autism and enhance the child’s development, but none are cures.
“When we talk about what we have empirical support for it’s very limited, and none of them are quick-fixes,” Riccio says.
Applied behavior analysis for a child with severe autism, for example, can take up to 40 hours a week for 20 weeks, a commitment that is both time and labor intensive. The lack of treatment options leads frustrated parents to look elsewhere, often outside the medical mainstream. According to a recent paper in Complementary Theories in Clinical Practice, between 32 and 74 percent of parents of children with autism report trying CAM, often experimenting with multiple therapies at the same time. The wide range in percentages is partly due to many parent’s hesitation to admit their trials with CAM to their doctors.
There are several different types of alternative medicines, each tied to a proposed mechanism for the underlying cause of autism. Nutritional supplements such as vitamin C and vitamin B6 are popular alternative treatments that target supposed abnormalities the production and release of neurotransmitters like dopamine and serotonin. Parents also often put their children on gluten-free casein-free (GFCF) diets, based on the claim that chemicals found in products containing those substances can cause social withdrawal and other hallmarks of autism.
While treatments like these are largely benign, says Riccio, evidence for their effectiveness is mostly based on anecdotal case studies. Merryl Schechtman, a behavioral pediatrician at Albert Einstein College of Medicine in New York City, says empirical support for alternative treatments is hard to come by.
“In the absence of large, blinded, randomized, and repeated trials, it is difficult to establish that CAM works,” she wrote in an email. “In small studies there may be large, demonstrable placebo effects which caretakers and researchers mistake as evidence for improvement.”
Compared to mainstream practitioners, CAM vendors offer a tidy explanation for the causes of autism, and many claim that by following their regimens, children with autism will experience transformational improvements.
“Some of the people who provide alternative and complementary medicines do not believe in the scientific method, they believe in hucksterism,” says Vidya Gupta, a behavioral pediatrician in New Jersey. “They are very good speakers and presenters, and although most of it is pseudo-science, some parents get lured to it.”
In a 2006 study, 26 percent of parents reported that they believed there was a specific cause for their child’s autism; 46 percent responded ‘maybe.’ When doctors refuse to speak with parents about these alternative explanations, parents lose confidence in their doctors’ knowledge of autism research, says John Harrington, a pediatrician at Children’s Hospital of the King’s Daughters in Virginia and one of the paper’s authors. The parents who had tried the most alternative therapies also reported having the least confidence in their doctor’s abilities.
The rise of the internet has increasingly allowed parents to research autism from home, giving them a feeling of empowerment and control over their child’s illness. But it can also expose them to a barrage of dubious claims about autism treatments, researchers say.
“In the age of Google, people feel more confident and self-sufficient in managing their children,” Dr. Gupta says. “They don’t want to sit helplessly, and that is being exploited by some of these vendors of CAM.”
Though many CAM treatments do not pose serious risk to the child, some, such as chelation therapy, can be lethal. Chelation therapy is based on the hypothesis that children with autism have excessive mercury and heavy metals in their system that can be eliminated using detoxification agents. If the child does not actually have mercury poisoning, exposing him or her to chelation can cause harm. Between 2003 and 2005, there were three deaths in the U.S. due to complications arising from chelation therapy, according to a 2010 study in the journal Neurotheraputics.
Alternative therapies can adversely affect more than children’s health. Many are expensive and time-consuming. One – hyperbaric oxygen therapy – lasts about 40 weeks and costs between $1600 and $2400. Additionally, families who try CAM often report strain on the marriage and a shift of resources and attention away from other siblings.
Even so, parents continue to try CAM and doctors struggle to help them figure out the best course of action for their family.
“If you have a child who is self-abusive, who you can’t communicate with at all, who you can’t leave alone, then you are going to be a whole lot more desperate and willing to ignore the risks of some of the more dangerous treatments,” Riccio says.
The American Academy of Pediatrics suggests that in the absence of direct harm, doctors should not simply insist that parents stop alternative treatments, despite the lack of evidence for their effectiveness. Instead it recommends speaking candidly about the research behind alternative therapies and avoiding insensitive and defensive reactions to parent’s inquiries.
“If I have ten patients and they all say they want to try it and I stonewall them, they are just going to go to somebody who approves it,” Dr. Gupta says. He adds that if parents are going to try CAM, the best thing doctors can do is guide them through the process and provide them with the tools to think critically about the effects of CAM. “Everybody reaches their level of acceptance at their own pace, and as a physician I cannot push it.”
For Shannon, sitting idle was not an option after Leo was diagnosed with autism. “I’m a person of action,” she says. So she started a now popular blog called Squidalicious, which chronicles her day-to-day experiences raising a child with autism. Still reeling from her devastation at Leo’s diagnosis, she found a book on Amazon that described the alternative therapy Defeat Autism Now, or DAN!, and eagerly enrolled her son. Even though she didn’t see substantial changes, she kept at it.
At the time, Shannon and Leo were seeing a pediatrician who was strongly opposed to alternative therapies, and he eventually dismissed the Des Roches Rosas from his practice. Shannon wrote letters explaining her approach to other pediatricians in her area, and found another that was willing to take them on. Their new pediatrician wasn’t enthusiastic about CAM either, but she preferred working with parents who choose alternative therapies rather than turning them away, and openly discussed the merits of the treatments.
A short while later, after talking with her pediatrician and other family members, and years of trying unconventional treatments without results, Shannon gradually stopped casting around for alternative therapies.
“The thing about all these supplements is they taste awful and ruin your day, you have to regiment everything around them, especially if you are following the special diets that go with them,” Shannon says. In the end, “the only thing that they did was cost us money.”
When she took her son off the supplements and the GFCF diet about seven years ago, Shannon observed that life became more manageable and Leo seemed happier. She has since devoted her energy to blogging and editing Thinking Person’s Guide to Autism – a resource that aims to provide clear and evidence-based information on autism for parents unfamiliar with the diagnosis.*
“I used to be so worried and distraught thinking he was limited, and now I just realize that he is the best Leo that he is going to be,” she says. “I guess you could say I moved from conditioned pessimism to informed optimism.”
*Correction, January 29, 2013:
Originally, this article failed to mention that Shannon Des Roches Rosa took her son off supplements and the GFCF diet seven years ago. This has been changed to clarify the timeline of events and reflect Shannon Des Roches Rosa’s work at Thinking Person’s Guide to Autism.