Shannon Des Roches Rosa
My son has had a challenging few months. We have been scrambling, hard, to figure out the best ways to support him, help him feel comfortable and settled. Medical treatments have helped, as has a forensic approach to figuring out stressors in his environment, as has looking back through his daily record for patterns in sleep, illness, exercise, and routine. But when he’s still unhappy or dysregulated despite all our best efforts plus the efforts of his extended team of doctors, educators, and therapists, I feel like I’d do anything to help him.
An autism parent at such a loss is in a potentially dangerous spot. Their autistic child more so. Because if mainstream medicine and legitimate therapies and approaches can’t provide answers, that’s when parents tend to look elsewhere. That’s when they risk exposing their child to therapies that can cause physical harm (e.g., chelation), mental harm (claiming to “cure” autism and so teaching an autistic child that they and their neurology are unacceptable), or use up funds that could be put towards legitimate autism therapies and supports.
It’s enticing, hearing from other autism parents about seemingly miraculous approaches or therapies. But too many “autism doctors” — legitimate MDs even — use their medical credentials, combined with a soothing bedside manner and sciencey terms to convince questioning parents that they understand them, they can help them, they can give them the answers mainstream science can’t. It’s a ruse, and parents need to be extremely cautious about putting their faith in such people, or giving them money — or letting them have any influence over their autstic children’s welfare.
Parents need to be especially careful when case studies are used as evidence to support alternative autism therapies. Most non-scientists don’t realize case studies can explore or set the foundation for a hypothesis, but do not prove anything unless the studies’ results are confirmed and replicated. And not all published science is created equal — there’s a lot of pseudoscience and half-baked science out there that looks just like real science. We need to approach doing our own research with caution, advises Gina Kolata:
“…researchers are now raising the alarm about what they see as the proliferation of online [science] journals that will print seemingly anything for a fee. They warn that nonexperts doing online research will have trouble distinguishing credible research from junk.”
This is why I always contact scientists when I have questions about autism research — they tell me about the pros and cons, not just the pros. And their only interest is in whether theories are valid and supported by sufficient evidence. They are not interested in ‘balance,’ and, as Curtis Brainard writes, understand…
“…the problem of ‘objectivity’ in stories for which a preponderance of evidence is on one side of a ‘debate.’ In such cases, “balanced” coverage can be irresponsible, because it suggests a controversy where none really exists. (Think climate change, and how such he-said-she-said coverage helped
sustain the illusion of a genuine debate within the science community.)”
Parents need to be very careful about alternative autism approaches and testimonials. Very careful. Usually when an alternative approach “works,” there is something else going on — natural development, the very real placebo response, the fact that families seek alternative approaches when in crisis and the fact that they’re coming together and paying attention and focusing can help a lot, etc. The problem is that the success or development is then attributed to the alternative approach.
It gives me no to pleasure to point out how alternative autism practitioners take advantage of parents’ frustration and desperation to help their kids. Autistic people and their families deserve better and legitimate resources, but as of now there are too few of those resources, plus they are not always easy to find — and certainly not easy to fund. But we have to stay strong, we have to decry those slippery autism hucksters and their “science” whenever they start targeting us — and our pocketbooks.