Alternative Medicine and Autism

~ Laura

Last week, my friend, Cynthia, told me that she was considering getting B12 shots for her son, who has ADHD. She wanted to know what I thought about it. Since I just spent three hours reading a Jenny McCarthy book, it's a good time to blog about alternative medicine and autism. (Surprisingly, McCarthy's book did not suck.)

Some parents and doctors believe that B12 shots, a gluten-free diet, and other supplements help to minimize the affects of autism and other neurological differences. They believe that these children have unique digestive systems that cannot process certain foods and that they need supplements to help regulate their systems. I know some very smart, responsible parents who swear by the results in their children. While I respect these friends, I am a doubter. I'm not an angry doubter, as I am about the whole vaccination vacation thing. Still, I am a doubter. 

There is not one shred of scientific evidence that any of these alternative treatments work. Some believe that all scientists are in the pocket of the medical-pharmaceutical industry. I do not. 

It is very difficult as a parent to objectively evaluate the benefits of a treatment or therapy, because your sample size is one. You will never know if this treatment is responsible for the spike in your child's progress, when you are also doing two or three other therapies at the same time. The spike in progress could also just be an old-fashioned growth spurt. 

I am quite sure that if you stop eating pizza and pasta for dinner every night, you'll feel better and so will your disabled child. But that doesn't mean that completely removing gluten from your diet will make you feel like Superman. 

There may be a subset of disabled kids who have milk allergies or have celiac disease. For that group, a change of diet makes sense, but everyone else can benefit from moderation. 

This alternative medicine craze can sometimes push me from indifference to anger, when I think about the pseudo-professionals who are preying on the grief and helplessness of parents. I also worry that these treatments drain the energy and money of parents, when there are real exercises that can help the child. 

What makes a difference? What can parents do to help their neurologically atypical kids? It's very boring, time intensive stuff. You have to talk to your kid all the time. And when you get tired of it, you have to hire someone to step in and help. You have to limit time on the computer. They need to be outdoors, getting exercise. They need to eat vegetables and fruit. They need to be put in social situations. And they need to be appreciated for their differences. 

Published by Laura

33 thoughts on “Alternative Medicine and Autism”

  1. In other words they need constant intentional parenting. Very wearying to do, but the only thing that has a chance of helping them learn to cope with a world they don’t “read” automatically. They need parents who will interpret for them as well as set and enforce boundaries, give them chores etc. Hard work, and while therapies can help, and diet can help nothing is a magic bullet for daily and hourly work…K

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  2. I usually see this from the point of view of worrying about the snake oil salesman. A fair number of “alternative” interventions don’t do any harm (well, directly. I do worry about the harm of concentrating on removing gluten from the diet when it interferes with everything else a child needs).
    But the snake oil, it’s so rampant, and it’s even pushed by folks who otherwise seem like legitimate scientists, because they get excited by the hype themselves. Wakefield went over the edge, but there are plenty of others who stay on the border, but let themselves get deluded by the grandeur of being a savior (if not the filthy lucre). Cogmed training for ADHD & FastForward for dyslexia are my personal pet peeves). They’re not bad, research along those lines is important. But in clinical practice, the game-like interventions are sold as high tech (and costly) solutions. I’m hoping hacking/the app revolution will break those kinds of monopolies, where the treatment might be effective, and, even if it isn’t, at least people will not have to pay $1000’s for them.

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  3. PS: I pick on Cogmed & FastForward because the people behind them are legitimate scientists with legitimate ideas worth pursuing. They just shouldn’t be charging thousands of dollars for unproven treatments to desperate parents.

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  4. It is very difficult as a parent to objectively evaluate the benefits of a treatment or therapy, because your sample size is one. You will never know if this treatment is responsible for the spike in your child’s progress, when you are also doing two or three other therapies at the same time.
    This is right, and you also have to add in that people “see” what they want to, and what they think they should. A great example is a recent study, highlighted by Tyler Cowen, about how there’s no clear connection at all between sugar and hyperactivity, though parents who were told their kids had had a sugary drink were _much_ more likely to think their kids were being hyper, whether the kid had had a sugary drink or not.

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  5. I almost hate to post a comment here, because I have a feeling I’ll be a lone voice in favor, but my experience is my experience, and I think important to describe.
    I too was a doubter. Heavy duty. I first heard about the GFCF diet and all the biomedical intervention ten freaking years ago, shortly after D was diagnosed. I scoffed, but within months, we decided what the hey, give it a try. We took him off dairy for two weeks, challenged it, saw no difference, went back to our usual. It was too hard to deprive him of pizza at parties, etc., and it just made no sense to me. The science, as I heard it described, was questionable at best.
    Fast forward ten years. We now have other reasons to look into all sorts of health matters, especially including alternative medicine and nutrition. Gluten keeps coming up as specifically causing inflammation, which can affect the brain, as well as other bodily functions. Dairy shows up as a lesser inflammatory.
    I decided to do a trial run at the end of March, with D’s consent. All three of us went gluten (and later dairy) free. It turned out we never needed to do an official challenge. We accidentally ate something containing gluten, and both he and I had pretty intense, clear cut reactions. (Turns out I have celiac disease.) Our reactions were quite different, though. D described it as feeling like he had ants crawling under his skin, that it was hard to think, and that he felt like he was both depressed and angry at once. We first cottoned to his response because he started screaming at the top of his lungs about something quite minor. He also became incredibly sensory seeking.
    Here’s the thing: he didn’t know he’d been glutened. And his response timed exactly with mine, which was of a physiological, not a psychological, nature.
    Over the past eight months, we’ve seen noticeable changes in him, primarily related to improved focus, reduced stimming, and better emotional regulation. There are no other changes in his world that would account for it, as he’s not in any therapies at the moment, and everything else is pretty stable. I never ever would have anticipated this. Seriously. But D says he never wants to eat anything containing gluten again. He HATES the way it makes him feel.
    I’ve done a bunch of research on gluten in the past months, because I was so shocked at our dual response to getting off it. We’ve started adding supplements and such, and that’s been interesting as well. Some definitely seem to help, others I’m not sure about. If you’re interested or curious about this, we can talk privately. It’s an ongoing investigation for me.
    Do I think it’s a cure? No. Do I think it can help? Yes. It seems to get rid of some of the “noise” in a kid’s brain, making the rest easier to tackle.
    From what I’ve observed, reducing gluten does little, maybe nothing. You have to let the gut heal from years of assault by going entirely off gluten.

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  6. I’m with you on the rage about pseudo-professionals, without any examination or consideration, peddling their woo as the surefire cure for what ails your kid.
    As you say, for the subset of people who are lactose-intolerant and/or have celiac disease (and it can be a large subset), addressing those issues might well be a big step. But there are many people with autism who don’t have those problems and pitching this as a cure-for-all is maddening to those of us who’ve tried it already without any improvement.
    My daughter has autism. My daughter does not have a dairy allergy. My daughter doesn’t have a problem with glutens. My daughter’s had an MRI that’s shown us some of how her brain is differently wired. My daughter is one-of-a-kind but she’s also a person with autism and I don’t think that any medication is going to change that. She’s been different from birth.
    I’d be happy to hear that someone else has found a way to relieve distress through dietary changes and vitamin supplements, but trust us when we say ‘that’s not our problem.’

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  7. I’m happy if dietary restrictions can help anybody, even if it isn’t backed by replicated science. I’m having mixed feelings about using “glutened” as a verb.

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  9. One thing I’ve seen is a much lower ability to deal with low-blood sugar and dehydration, coupled with less awareness of the need to eat, drink, etc. regularly. If a snack is missed, all sorts of bad things start happening. Could it not be partly just that the GFCF people are being a lot more “mindful” (hate the word, but it fits) and scheduled about diet and meals (because they have to be)?
    A mom and dad of our acquaintance swear up and down that red dye causes increased hyperactivity in at least one of their already VERY energetic children.

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  10. Darn it–somebody just asked me for a waffle and egg and my next comment idea evaporated.
    OK–got it!
    One phenomenon that I’ve recently noticed is that around 5 or 6 years old, a lot of kids start developing persistent tummy aches that disappear as mysteriously as they appeared. Some people would mark it down to school avoidance, which may be true for some children, but when our 6-year-old had it, I’m pretty sure that he wasn’t avoiding school. I’m pretty sure that he had the pains just as much on the weekend or vacations. He saw a pediatric gastroenterologist (!!) briefly, took some medications, and it eventually cleared up, but he might have just grown out of it.
    And then there is the question, what is colic, anyway?
    The tummy is a very mysterious place.

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  12. Thanks for sharing your story, Tamar. I’ve been following your tales on Facebook with interest. I’m not sure why you’ve seen such great results with your son. Perhaps scientists haven’t been able to find results, because autism is too big of word. There are actually 20 different disabilities that have been mistakenly categorized as “autism.” Perhaps your son’s variety of autism is sensitive to gluten. Perhaps he has a touch of celiac disease. His increased focus may just be a factor of brain growth. I’m not sure.
    But the human animal has been eating bread for tens of thousands of years. Our bodies should be able to digest it properly.

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  13. MH, glutening as a verb is standard in the celiac community. Trust me, it comes up enough with cross contamination that you need something simple and short to describe what just happened to you. “I got glutened” has a punch that feels right.
    Laura, my understanding of it is this: First, wheat has been hybridized beyond recognition, and I gather that much of that hybridization has been about enhancing the protein content — the gluten. So we are in fact not eating what our ancestors ate. Second, we eat very differently in general in modern times, with a far higher focus on simple carbs. We know this causes metabolic syndrome, but there’s reason to believe it does other damage to our bodies for some of the same reasons: it causes inflammation. Third, our world is pretty toxic. From parabens in our air fresheners to formaldehyde in our furniture and our clothing to pesticide-laden GMO ingredients in just about all processed foods to BPA in our water coolers — I could go on and on. It has a cumulative effect.
    I have believed for a long time that autism is caused by a combination of genetic predisposition and toxic load. I believe now that gluten intolerance, both of the kind that D experiences and the kind that I do, is another result of this toxic stew. So if autism is a result of a system that’s hypersensitive to toxins, this gluten/casein intolerance could be an often-concurrent component. Going GFCF has helped quiet the sensory problems, making other things easier. His brain is still wired differently, but it’s easier to work with that without the sensory bombardment. Truth is, I was ready to quit homeschooling. It was just too hard to get him to stay on task. World of difference now.
    His increased focus is pretty clearly shot when he has dairy, BTW. His multiplication tables go out the window, for one thing. So it’s not just increased brain function.
    I always believed that D was NOT one of those kids who would be helped by the diet. Some kids on the spectrum have a lot of ear infections and digestive problems. He was never one of those. He had one ear infection, I think, when he was about eight. And his digestion was fine. Super healthy kid.
    One symptom he did have: dark circles under his eyes. This is apparently an indication of food intolerance. It took me a very long time to see it as anything but “oh, he’s not getting enough sleep,” but I think it was there for years. It’s largely faded now.
    If you like, I can send you some links I found helpful in understanding a bit of what was going on, both for him and for me. (I was absolutely dumbfounded that I had a reaction to gluten, never mind such an intense one.)
    One more thing: my husband has had mild ADD his whole life. Within days after he got off gluten, he said his brain cleared. The background noise that had been present his entire life was gone. About a month into being gluten free, he got on Wii Fit Yoga for the first time in over a year. His scores took a massive jump up. His balance and focus were demonstratively that much better. And he is clearly not celiac.
    I wish there were more rigorous studies. I also wish people like Jenny McCarthy weren’t running around touting it as a cure. But there truly is something to it.

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  14. One more thing: my husband has had mild ADD his whole life. Within days after he got off gluten, he said his brain cleared.
    If I had to guess (and the fact that I don’t isn’t going to stop me), I’d bet that things like that have more to do with the fact that stopping gluten is a proxy for eating more healthy foods.

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  15. I’d bet that things like that have more to do with the fact that stopping gluten is a proxy for eating more healthy foods.
    Nope. We started to eat super healthy last August, after his cancer diagnosis. Went off gluten in early April.

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  17. Again, nope. He went low carb, low glycemic back in August ’10, the same time we started eating mega healthy.
    Also, FWIW, most people who stop eating gluten start buying GF prepared foods, breads and the like. Which are generally quite high carb, with ingredients like rice flour and potato starch. I bake my own for this reason. (Plus, they’re crazy expensive.) Gluten free does not necessarily equal healthy.
    Seems like you’re all stretching to find an alternate explanation. Sometimes the path from point A to point B is a straight line. He got off gluten, his brain fog cleared.

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  18. Seems like you’re all stretching to find an alternate explanation.
    Something more general would be nice. It is impossible to eat any food if you follow the dietary restrictions of everybody who has told me what worked for them. Between vegans, paleo, Atkins, gluten free, peanut free, and what not, the only food left is green veggies and blue berries.

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  19. the only food left is green veggies and blue berries
    I went on a very heavily blue berry based diet this summer, when it was possible to go pick huge amounts of blue berries near my home, and felt great. I must admit that I was putting whipped cream and sugar on them most of the time, or blending them into whole mile yogurt, or putting them in a nice salad, but lots of blue berries. And I felt great! So, I recommend blue berries. With whipped cream and sugar, or even better, in pie form, as a heavy part of your diet.

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  21. I’ll accept that going gluten free can be good for people that are sensitive to that but I don’t buy that the incidence of gluten sensitivity is greater in the population of people with autism.
    How much of this psychological and how much is physiological? Does it matter? I can imagine that going gluten free is similar to taking an SSRI placebo: the physical effects are real but there’s nothing physiological that’s triggering them.
    “He got off gluten, his brain fog cleared.”
    I can’t read the phrase brain fog without thinking of Joe vs. the Volcano. Joe’s brain cloud death sentence proved to be the best thing for him!

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  23. MH, you forgot raw! Those people are intense. (But some of their concoctions are surprisingly delicious.) And some people react badly to the nightshade family (eggplants, tomatoes, potatoes). And soy and corn and eggs… (I love my eggs.)
    I understand what you’re saying, of course. This is why a lot of people advocate doing a detox diet: taking out EVERYTHING that could potentially be an issue for two weeks or so, then re-introducing them one by one so you can see if you have a reaction to anything in particular. I see the merits of this for an adult. I wouldn’t try it with a child.
    Also, blueberries are awesome.

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  24. Scantee, when I told my husband your comment about placebo response, he said that would only be valid if he’d known this might happen. Quote: “It was completely unexpected and not wished for. It just happened.”
    (And by not wished for, he doesn’t mean that he didn’t like the result. Just that it was the furthest thing from his mind.)
    He also says his finger joints had been swollen for decades. He didn’t realize it until his wedding ring started falling off after the swelling subsided — yes, after he got off gluten. Another unlooked-for benefit. Pretty damned clearly not placebo related.
    Also, my son reacts to gluten when he doesn’t know he’s had any.
    Okay, I’m out of here. This has taken too much of my time today. I just wanted to share my family’s experience with Laura. I don’t care how many of you remain skeptics. You’re welcome to it.

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  26. some people react badly to the nightshade family
    I especially have trouble with deadly nightshade. Stay away from that stuff, even in pie form.

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  27. As MH says, I have no problem with the dietary choices of others. It’s taking me a fair amount of growing up, but I’ve gotten better at judging where other people’s choices are just not my business, unless they’ve asked me my opinion (it’s been harder to get there with religion).
    It’s not even proselytizing to tell personal stories. But I will admit that I have to suppress a strong (and fundamentally evil) desire to test people’s assumptions. I do suppress it, though. It’s interesting, though, that I don’t have a similar desire to interfere with people who cite to taste or ethics or religion when making food choices (no sneaking desire to add meat products to people’s vegetarian diets). I wonder why?

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  28. These questions do raise the interesting question of how one decides on the adequacy of evidence for making different decisions. A personal decision to avoid red dyes, or sugar, or gluten. All those don’t seem like they should have to pass very strong evidence standards. People should be able to choose for themselves; they largely can.
    But, what evidence should be required for accommodations? As a friend? As a school? As a company? As a government?
    What evidence should be required if we’re going to pay for the intervention (through govenrment resources or by regulation?).
    I think these are tough questions — Megan McArdle brings up “evidence based medicine” in the context of thyroid medication (which is undoubtedly necessary in some cases, but also abused). I don’t think the answers are simple, and I don’t think that my personal thresholds for evidence should be required for everyone, especially if the decision is personal.

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  29. “I wonder why?”
    Because it’s an encroachment on your turf. If somebody says, “gluten make people sick,” that’s your professional turf, whereas “eating pork is an affront to the Creator” is not.

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  30. We don’t have the studying for quizzes around here. I don’t think they have many, and that time is built into the day to practice.
    I think our teachers are pretty good at timing how much time it will take an average kid to do satisfactory work, and stay within their guidelines (10 minutes/grade/night). The three issues I see for folks in negotiating the load is 1)kids with significant extracurricular 2) kids with uneven abilities who have to spend extra time — for example with handwriting or with working memory or attention span or arithmetic skills 3) kids who can do average work in the average time but are motivated (either by themselves or their tigerish parents) to do more to do above average work.
    I think that right now (when nothing really counts and there are no grades) I’ve been able to avoid #3 (though I don’t know that my kids will). My kids are evenly skilled, so don’t struggle with #2. We do have a significant extracurricular load that requires planning (yesterday, my 5th grader left home at 7:40 AM and didn’t return until 9 PM — she was picked up from one activity to go to another, and given dinner in between). Our 2nd grader has two days where he’s gone from 7:40 AM to 7:30 PM. So we do struggle with #1 on occasion but are able to manage when we plan properly. Boy, when I write that it sounds scary. But I think they’re doing OK. Will need to double-check.
    I do know that some other teachers don’t have a good feel for how long it will take kids to complete the tasks they assign and I’ve also heard of poor coordination among subjects.

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  32. I think that right now (when nothing really counts and there are no grades) I’ve been able to avoid #3 (though I don’t know that my kids will). My kids are evenly skilled, so don’t struggle with #2. We do have a significant extracurricular load that requires planning (yesterday, my 5th grader left home at 7:40 AM and didn’t return until 9 PM — she was picked up from one activity to go to another, and given dinner in between). Our 2nd grader has two days where he’s gone from 7:40 AM to 7:30 PM. So we do struggle with #1 on occasion but are able to manage when we plan properly. Boy, when I write that it sounds scary. But I think they’re doing OK. Will need to double-check.

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