Why doctors need to walk a 'fine line' when talking to parents about alternative therapies for autism

Canadian pediatricians and family doctors are being encouraged to speak up about alternative treatments that many parents of children with autism seek out, because those therapies are often unproven and even potentially harmful.

In a new position statement, the Canadian Paediatric Society, a voluntary professional association that represents the country's 3,000 pediatricians, describes the field of complementary and alternative medicine (CAM) as "rapidly evolving," and says it can "divert time, emotional energy, and financial resources away from more effective conventional treatments" for autism.

"Clinicians must remain familiar with current evidence in the rapidly evolving field of CAM therapies," the statement says, "and be ready to help families distinguish between proven and promising therapies and those that are unproven, potentially harmful, and expensive."

The statement was drawn up by CPS's autism spectrum disorder guidelines task force, which also authored advice to physicians on early detection and standards for assessing autism.

Task force member Dr. Lonnie Zwaigenbaum, a developmental pediatrician in Edmonton, said his fellow physicians must tread carefully when talking to parents, because complementary health practices are very prevalent, and some parents may not disclose relevant information if they feel judged.

"We walk a fine line," he said.

Importance of respect

The task force identified unproven complementary treatments such as vitamins and restrictive diets, herbal supplements, special diets, CBD oil, antibiotics and antifungals.

Zwaigenbaum also warned that blood detoxification (chelation) and hyperbaric oxygen therapy are considered risky.

"We do really need to find that sweet spot between giving accurate information and highlighting potential risks," he said. "At the same time, doing it in a respectful way so that we're not coming across that somehow parents aren't sufficiently informed to be making good decisions for their children."

The list of CAM treatments identified by the pediatric society isn't exhaustive. It doesn't mention, for example, chiropractic treatments, acupuncture, bleach, electrodermal screening, as well as other unconventional tests ordered by alternative health practitioners.

There are no regulations in Canada governing what qualifies as an effective treatment for autism.

Speech therapy, counselling and applied behavioural analysis are among the accepted forms of conventional treatment. However, there is no universal approach to autism treatment.

New Brunswick physician Dr. Philippe Chouinard said that can make parents vulnerable.

"That's where a lot of alternative treatments will prey on parents' fear and concern for their child's future."

Chouinard has young patients with neurodevelopmental issues and has been outspoken about what he calls pseudo-scientific treatments.

He said he wanted the pediatric society's position statement to go further in addressing the long-term impact of some alternative therapies on children, who often don't have a say in their own treatment.

"It's not always free of physical or emotional consequences. I would have liked to have them focus more on those risks, which they don't seem to state."

The family doctor said another issue that should be addressed is how doctors sometimes don't offer parents of children with autism a lot of hope, which could drive them to unproven alternatives.

"When we talk about autism, we tend to focus a lot on the deficits. We have to focus on autism as a series of cognitive strengths and challenges."

'We get judged for everything'

As a parent of a child with autism, Sandra Hart of Innisfil, Ont., said her son's family doctor didn't discourage alternative therapy. But Hart admits she may not have disclosed everything to him.

"You know, we get judged for everything we do as special needs parents. It comes with the territory."

In 2008, Hart took her son, Christopher, who was nine years old at the time and had severely limited verbal skills, to a chiropractor north of Toronto who claimed he could "correct" autism with cranial "adjustments." She also took Christopher to see a practitioner of electrodermal testing, who operated out of the chiropractor's office.

Hart estimates she spent more than $5,000 on the chiropractor over the course of a year and hundreds of dollars more on testing that resulted in her buying multiple nutritional supplements for her son.

"The chiropractor just kept saying, 'Well, you know, we need to go a little bit further. You know, he's doing so well, let's just keep it going.' It wouldn't have stopped had we not stopped it ourselves," said Hart.

The added expenses required making some sacrifices, she said. 

"We were a single-income family so that I could stay home and work with Christopher," Hart said. "I'd never complain about it, but we did do without."

Hart said she had no way to tell whether the treatments were helping her son expand his verbal skills, as he was also seeing a speech therapist at the time.

She feels she was taken advantage of.

You feel inadequate as a parent if you can't do everything possible- Cathy Wright

"It's desperation. There was no guidance before, from anybody."

She said she's pleased the pediatric society is encouraging physicians to talk to parents about the usefulness of particular CAM treatments.

Cathy Wright of Toronto said she had to take out a line of credit to help pay for alternative therapies for her son Isaac, 24, when he was a child. She estimates she paid up to $10,000 over the years, excluding food for special diets that a naturopath recommended.

At times, Wright said, it seemed the mainstream health-care system had "written off" Isaac, and that there wasn't much more that could be done to help him.

"You feel inadequate as a parent if you can't do everything possible," she said.

Wright paid for chelation therapy, frequent vitamin B12 injections, homeopathic treatment and a battery of expensive tests that she now says "tell you a lot of bullshit about your kid."

Wright is skeptical the new recommendations from the pediatric society will discourage parents from trying costly but unproven alternative therapies.

"There is always going to be a market for this kind of thing."