Autism Recovery: Don't Ask, Don't Tell

[Guest guest]

Why is the medical industry so resistant to change and new concepts? A little over 100 years ago doctors wouldn't believe that germs could be transferred from patient to patient if they didn't wash their hands. Hell, when the idea was suggested by Holmes and others, they dismissed the idea because doctors were gentlemen and therefore their hands wouldn't be dirty.

Autism Recovery: Don't Ask, Don't Tell

by Judy Converse MPH, RD, LD

It's happening all over: Kids use nutrition, special diets, and biomedical tools for autism. They make stunning progress. They blow through ABA trials instead of trudging along; they approach peers on a busy playground; they look their parents in the eyes and start talking; they function at school, and teachers' jaws drop. Wow!

So, mom tells the pediatrician, the neurologist, the developmental pediatrician, the psychiatrist – all those first point people who usher a family into life with autism. OMG! Look at this kid, right? Great news, right?

Wrong. These are also the people who told mom not to bother with the nutrition piece of this puzzle, the ones who chanted "diets don't work". These are the experts after all, the big guns, and families buy the biggest MD guns they can afford when autism comes calling. But now the very people who diagnosed the kid in the first place have nothing to say. They don't tell their colleagues, don't investigate, don't want details. Therapists for speech, behavior, and OT are impressed, and teachers too, but the child's doctors are not among the converted. In fact, they're not even interested.

Why not? Are doctors afraid? Humiliated? Arrogant, just needing to be right?

I think: Yes. Yes. And, yes.

Doctors who stand up for this intervention get shoved off the cliff by their peers, like a baby puffin trying to fly, only to flail haplessly into the jaws of a leopard seal in the churning waters below. Even though child nutrition is an evidence-based area of science and clinical practice that is a century old, it's not what they studied. A kid with autism who turns around using this intervention makes them wrong. Recoveries progress right under their noses. But they don't ask, and they don't tell. They don't even want to know. So, suddenly, the child was "misdiagnosed" to begin with. They don't read the data that could explain the developmental progress, data on child nutrition, on autism and nutrition, or on toxicity. That would require them to open their minds, and, I think, many of them have chosen not to. The medical community prefers to regard children with autism not as children, but as another

sort of mysterious creature altogether, for whom standards of nutrition care apparently don't apply.

Parents in my practice are stunned when they first experience this with their physician providers. They expect their doctors to share their joy and amazement. Most the time, it doesn't happen. The professionals whom they trusted to navigate these treacherous waters for their child go from warm and engaging to stony faced and judging, when mom gushes with excitement about progress with nutrition tools, diets, or biomedical treatments.

What's a doctor to do? After years of being paid very, very well to pay no attention to nutrition whatsoever, and treated like a deity by patients, employers, neighbors, family, drug companies, and colleagues, what well-situated doctor would not be humiliated to see one of his most profoundly autistic patients about-face in this way? After languishing for eons – at great cost both financially and in the largest human terms – under that doctor's precious watch, the child begins to gain momentum toward health, growth, talking, socializing, eating well, and playing – because of a diet intervention? A little humbling, I would think.

Humbling turns to arrogance, though, when a doctor can't pick up the phone and ask what worked so well. In ten years, I have received few calls (maybe five?) from physician providers to make referrals or discuss progress notes. Don't they owe this phone conversation to all their pediatric patients with autism? Of course they do.

I can't help but think that there will be a tipping point in this autism tsunami we now have. I think parents will get bolder. They will focus more on solutions, and will have less time time for doctors who don't help and don't listen. There will be too many kids with autism progressing in ways that defy autism itself, for so many physicians to keep their eyes shut, ears covered, and mouths closed about improvements they encounter. For now, the medical community is, on balance, complicit with letting the autism epidemic continue. Unless they've chosen to leap off that cliff, doctors are not referring kids with autism for nutrition care, toxicity testing, immune function screening, or GI care. The moment approaches when families will leave those professionals wholly behind, to get helps their children need and deserve.

We have enough knowledge and evidence-based practice on child nutrition right now to redirect the lives of hundreds of thousands of children with autism. It's painful to read about cash-heavy non-profits, hospitals, or universities, complete with staff paid well into six figures, who can't seem to sort out what to do about this "mysterious" condition. Or to know that there are some 70,000 registered dietitians sitting on their hands in the US right now, because the American Dietetic Association – like the American Academy of Pediatrics – refuses a leadership posture and won't train people on what to do with nutrition care tools we already know how to use. When the press shouted recently that there is "not enough evidence" about diets for autism, as usual, they missed the point. Of course there is not enough evidence to recommend one diet strategy for autism; there never will be. There is

enough evidence that nutrition deficits can injure development, mood, behavior, learning, and growth in children. Like any other medical treatment or therapy, nutrition care must be individualized to be effective, and must be based on initial assessment, not on the diet of the moment. There is no one "diet for autism". There is nutrition care for growth failure, food allergies, painful bowel conditions, and nutrient deficits. Health professionals and medical scientists who withhold this care or deny it works are like puffins clinging blindly to the cliff. Here's to more of them taking the leap, and to more families looking beyond that crowded and, uh, crap-covered ledge for answers.

Man will ultimately be governed by God or by tyrants.

Make yourselves sheep and the wolves will eat you.

Beer is living proof that God loves us and wants us to be happy.

Ben lin