Yesterday I saw a story about a study showing that the “autism diet” (gluten-free, casein-free) had not demonstrated effectiveness in treating kids on the autism spectrum. I passed that along to a Philadelphia friend and reader of this blog who has been following the diet to treat his young daughter, who has Asperger syndrome, which is on the autism spectrum. He sent me the following reply, which I found so interesting that I asked him to revise it to protect his family’s privacy. He did, so I present it to you here for consideration and comment:

Thanks for sending that. Always good to know what’s out there being said. Keep ’em coming.
But, heavy sigh. As I am embarrassingly quick to say, and thus as I’ve probably said to you, and so this comes with apologies in advance for being a broken record and perhaps preaching to the choir, it drives me absolutely NUTS when gluten-free casein-free (GFCF) is referred to as “the” autism diet. It’s hard to know where to begin. If you will permit me a rant…
1) As I would have said prior to this study that, thinking anecdotally from my own experience, just going GFCF only helps 1/3 to 1/2 of kids with Autism Spectrum Disorders (ASD). GFCF just isn’t enough in many cases and nobody should claim or expect otherwise. Some kids respond, some don’t, and nobody knows until you try. The closest I see this article comes to acknowledging that is Stewart’s comment, “‘I think we need bigger studies that are more inclusive,” she says, perhaps including children with GI issues. ”There could be subpopulations that benefit.” In other words, if that hypothesis is correct, and I think it is, you roll the dice. Your kid is in the subpopulation that might get helped by GFCF, or not. Nobody knows the overall percentages in the population, and a study this small won’t pick it up. Too bad the article’s headline didn’t allow that nuance. The headline perpetuates misinformation by obscuring this point.

Our ASD daughter, I think, was in the subpopulation that got helped. I know that’s easy to dismiss as yet another parental anecdote, but what else can I offer?
When we went GFCF on Easter 2009, within the next two weeks, 10 or 12 people (neighbors, the school principal, etc.), who had no idea what we were doing with the diet at that stage and who were thus an objective reality check, commented that our daughter suddenly seemed brighter and more engaged. “She looked me in the eye and called me by name for the first time, what are you guys up to?” And lots more like that, from zero to sixty, in the fortnight after GFCF. What am I supposed to do with that? I know correlation isn’t causation, but am I also to deny that we saw some smoke and so reasonably suspect fire?
2) But that’s not the bigger issue. We’re not told the details of the diet in this study, but for the vast majority of parents I meet online and at autism groups, going GFCF means switching from one set of industrial processed convenience foods to a different kind of industrial processed convenience foods. That’s what it meant for us too at the beginning. Instead of buying Cheerios, you buy some sort of amaranth quinoa O from the supermarket cereal section. Instead of buying Kraft macaroni and cheese, you buy organic luv-a-bunny spelt macaroni-n-cheez, or equivalent. In other words, most GFCF kids are still in sugar and corn-syrup land. They are still gorging on soy and food additives and preservatives. No attempt is being made to heal their intestinal ecology. Basically, going GFCF is like buying a Prius instead of walking – and I say that as a Prius owner – for both are superficial solutions that attempt business as usual, and which are dangerous because they both mask the underlying profundities. The self-righteousness of the stereotypical Prius owner is insufferable because such people think they are doing something good, but they are actually perpetuating a larger problem that they’re not seeing. A Prius is still a car, and, in our civilazaiton, few know how to use cars in moderation. A Prius is still part of the oil economy, still a metal beast that, when taken to scale, destroys pedestrian-friendly community-building neighborhoods. So just as a Prius isn’t a profound enough solution to our energy and community issues, neither is GFCF a profound enough diet. A Prius will help a little, and so I bought one, but it can only be a first step or it’s actually being co-opted by the beast. Ditto GFCF – if not followed by further rebellion against industrial food, I think it’s a bad joke, and a joke with tragic consequences, in so far as the public is lead to believe they know what “the” autistim diet is and parents mistakenly think they’re doing all they can for their children.

3) Three conversations I’ve had with conventional experts stick in my mind as relevant to this discussion. Conversation #1: Last week I’m on the phone with our other non-ASD daughter’s pediatrician [a staff doctor at our local famous teaching hospital]. We’re discussing why both our daughters keep testing positive for arsenic in their urine. Can the doctor refer me to a pediatric or environmental toxicologist who can help us investigate our home? “No, there is nobody like that in our city.” [And our city has, what, four teaching hospital medical schools!] [And the doctor is wrong, by the way, sort of – I found a consultant who can help, but through a homeopath, not a mainstreamer; this guy is good and more mainstream scientific than the homeopath who referred me; web link on request ] Anyway, my question to the pediatrician: “Ok, younger daughter has 135 micrograms of arsenic in her latest test. Is that below or above the safe threshold? And if we tested 100 other kids in your practice, would they have comparable levels, or are our kids uniquely afflicted?” Pediatrician’s reply: “Nobody knows. Not enough studies have been done. Nobody makes money on this kind of thing, so nobody really has looked into it.”

Conversation #2, sometime last year, downtown at the same famous teaching hospital, talking to a pediatric nutrionist. I have taken our younger non-ASD daughter there to get a second opinion: will her older sister’s ASD diet be ok for the whole family as well, especially younger sister? will younger sister get the nutrion she needs? Nutritionists response: having looked at a one week family food diary and submitted it for analysis, she is stunned by the levels of vitamins and good minerals in younger daughter’s diet. She has practically never seen a kid so free of chemicals and preservatives. She’s worried about our [everyone but the ASD daughter’s] raw milk intake, but is otherwise impressed. So I lay aside the raw milk conversation for another day, and ask her: does she think this diet will help ASD daughter? Answer: she has no idea but “mainstream medicine has nothing really to offer these people [parents of ASD kids], so you might as well try it.” Conversation #3, at an ASD conference last year at a nearby university. I’m talking to a big deal teaching hospital psychiatrist about alternative medicine approaches to autism in general, diets included. His response: “many of these things are promising but not proven.”

What do I take from those three conversations? Mainstream medicine doesn’t have a heck of a lot to offer ASD parents aside from ABA behavioral therapy. The honest experts know that and are relaxed about admitting it, and they’re busy trying to fill in the gaps, and they’re willing to be conversational about the gaps in knowledge and the nuances of what’s promising. But many other so-called experts, especially front-line service delivery personnel with very specific applied training, are insecure about admitting how little they know,or are not curious, and/or don’t know that there is so much they don’t know. I’m glad somebody is studying GFCF, just like I hope somebody eventually gets around to studying the arsenic (some places are promising on the environment stuff – eg http://www.mountsinai.org/patient-care/service-areas/children/areas-of-care/childrens-environmental-health-center). But the problem is, the gap between “mainstream” and “alternative” is so wide, that I do not trust the mainstream types to actually ask the right questions and go deep enough. They’ve usually never heard of Sally Fallon (http://www.westonaprice.org/) or Natasha Campbell-McBride (http://gapsdiet.com/), and equivalents, or, if they have heard of them, they’ve often got snippets of half-remembered caricatures shaping their views. As our family knows from our experiences with Natural Famly Planning (I refer to the derisive snort most mainstream health practioners give towards Catholic practice, as compared to the sound science they don’t know they don’t know about which is coming from places like http://www.creightonmodel.com/), or as anyone should know from climate change or the current oil spill in the gulf, and a thousand other examples, that scientists and doctors are humans and subject to all the usual subjective epistemological blindspots. And so unless and until I meet a mainstreamer who actually understands GAPS or Weston Price and studies those schools of thought as they are actually supposed to be practiced (eg, no false presentations of the Weston Price as if it’s pro-high fat per simplicitur), I will keep experimenting with “alternative” approaches, because ours at least are not hurting and they may be helping. My standard of evidence might not be enough for an insurance company or a public health policy, for I accept it’s far from slam-dunk proof, but it is enough for a practical minded parent asking “what may help my kid right now,” and it ought to be enough for an honest scientist looking to create a research agenda.

It’ll be interesting to see where ASD studies are in ten or 20 years time. After that conference where I spoke to the psychiatrist, I had lunch with a guy I’d met there who had an Aspie kid in his 20s. The premise of the lunch was supposed to be that this older dad had been through the paces, and he was going to tell me what I had to look forward to, and offer fraternal consolation and advice. But within about ten minutes, the conversational dynamic had turned around. It became clear that having an Aspie kid in 1989 was different in important ways than in 2009, and that I knew things he didn’t. So please keep sending me studies like this one, keep me stimulated from outside my bubble, and let me not get stuck in my ways. Keep me supple and evolving, so I’ve grown in 20 years too. But let everyone else be humble too, and it is surely a safe bet that many things regarded as alternative now will be mainstream in 20 years. Which ones? Who knows. But that only gives me more, not less, incentive to try whatever might work now.

Please leave your comments below. Autism is a subject that tends to bring out the worst in people, so please be civil.