Are alternative treatments for autism risky business? The answer is yes... and no.
Autism: Kids Put at Risk is the name of a new article from the LA Times which is, in essence, an "expose" of biomedical treatments for autism. The story builds on last week's piece in the Chicago Tribune, which takes a similar negative stand on alternative treatments for autism.
According to the LA Times article:
After reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, an investigation by the Chicago Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.
The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on flawed, preliminary or misconstrued scientific research.
Lab tests used to justify therapies are often misleading and misinterpreted. And though some parents fervently believe their children have benefited, the investigation found a trail of disappointing results from the few clinical trials conducted to evaluate the treatments objectively.
Both of these articles legitimately point out inappropriate and misleading presentation of research studies. And both point to specific expensive and risky treatments which have the potential to injure children.
But there's more to the story than would meet the eye of the casual reader.
To begin with, the "desperate parents" described in the article are often desperate for a reason. They feel that all they've received from the medical community is a diagnosis and a handshake. The next steps, from researching and selecting treatments to funding those treatments, are up to the parents. And those parents are doing the best they can to find good information using resources available: the Internet, support groups and books. Is it any wonder that parents find suggestions that would not typically be supported by their pediatricians?
Or they've been recommended to intensive, 40-hour-a-week behavioral interventions (ABA), often described as the gold standard in treatment. But they've received no information as to how to access such therapy, or how to pay the tens of thousands of dollars it costs.
Or they've been offered potent anti-psychotic drugs or SSRI's to manage their child's behavior, all of which have significant known side effects.
Meanwhile, many of the available "alternative" treatments (that is, those that are rarely specifically recommended by developmental pediatricians) are neither risky nor "harmless New Age folly."
Some are well-researched (Omega-3 fish oil and B-12 supplements, for example).
Others are well-established, risk-free, and based on solid foundations of research conducted in other fields (various forms of developmental and play therapy such as Floortime, RDI, and the Play Project).
And while there is significant controversy around the issue of limited diets (gluten and/or casein free, specific carbohydrate, etc.), many families and some research studies report positive outcomes.
Bottom line: alternative treatments for autism run the gamut from high to no risk, and from useful to dangerous. Meanwhile, those mainstream treatments that are available do the same. To avoid the likelihood of parents saying "yes" to expensive, dangerous options, the medical community will need to offer more - not only in terms of diagnoses, but also in terms of treatment recommendations, resources, and ongoing support.
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