12.13.2011

What Would You Say to This Misguided Autism Parent?

Just came across this. Sigh. She seems like a reasonable, passionate sort -- but is totally invested in biomedical/DAN! autism chicanery. What advice would you have? How would you approach her?
My son has been back on gluten (wheat and related grains) for five days now. His behavior hasn't taken any noticeable nose dives, no sir. Quite the opposite. On Friday he went up to our friend Mary, and announced "Dat's Mary!" Everyone in the room was shocked and pleased. That same day his speech therapist told me he'd had his best session in weeks.
And (apologies, gentle readers) his bowel movements haven't been liquified, either. Those little logs are still rolling along. I am hopeful, oh so hopeful, that we can eventually phase in dairy, chocolate, citrus, peanuts, and sugar.

Now, does all this mean that the past nine months of special diets and vitamin supplements and dietary enzymes have been for naught? Hell no.

I firmly believe that autism arises from multiple causes: hard-wired genes, the environment (including lead poisoning), vaccines, and/or diet. But, as of today, there is no way to quickly pinpoint how a child became autistic. One of the only things a parent can do, can control, is dietary trial and error.

Hence the elimination diet. It was and remains complicated, but it is in no way harmful to him. Not a bit. As in, there was no harm in trying it, and now we may get to be fairly certain that diet is not a factor in his case.

In addition, his GI tract had been seriously messed up by round after round after round after round of antibiotics--the poor boy had non-stop squirts. Putting him on a bland diet has given his little innards the resting period they needed to rebuild themselves. They seem to be able to do their job just fine these days, although they are still getting a little assistance from probiotics (heartily endorsed by his mainstream pediatrician, BTW).

Many autism professionals, particularly those in the ABA field, are skeptical when it comes to elimination diets. Some are outright hostile, and will make concerted efforts to dissuade parents from trying dietary approaches. Fuck them. They're not the parents. They don't have to live with the child; they won't be there in ten years.

Again, there is no harm in trying an elimination diet, other than inconvenience on the parents' part (note that inconvenience does not equal impossibility). For some children, this diet makes an incredible difference. For others, not a whit. But wouldn't you rather know?

Ways to get started:
  • Read Karyn Seroussi's Unraveling the Mystery of Autism...
    Novelized account of her son's recovery due to a special diet; a bit shrill, but compelling nonetheless.

  • Read Lisa Lewis's Special Diets for Special Kids
    Causation, theories, recipes.

  • Find Yourself a Good DAN Doctor
    Ask for recommendations from current and former patients. Some of these practitioners should be canonized, but I have heard of others who are costly bumblers.
...

...

...

Well?

Now here's the thing. I wrote this post. Seven and a half years ago. One year after Leo's diagnosis. Because I was misguided. Because I listened to the wrong people (e.g., see list above). Because those people were the loudest voices in the autism parent community. Because good information wasn't available. Because a book like our new Thinking Person's Guide to Autism wasn't available.

But ... our book will be available, in just a few days. We hope it will make a difference to anyone new autism. We appreciate your patience, and hope you will help spread the word about our book, and why it's so important. Thank you.

12 comments:

  1. Wow. I had no idea you went through all of that, and I'm so thankful to have the resources I have now, especially access to tpga, where I have learned so much. Can't wait for the book.

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  2. Well, frankly.... except for the "Find Yourself a Good DAN Doctor" at the end, I would have no advice for this blogger. She gave it a try and ruled it out; we did the same thing. It seems perfectly reasonable to me...?

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  3. Going through a dietary solution isn't such a bad idea if you're facing issue in the pants department but it's not actually "autism" even if the problem does occur a little more frequently in autistic children.

    As for how to respond. Sadly, when a parent is as convinced as you were, there's not a lot that can be said. You just have to hint and wait until experience changes their story.

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  4. Jillsmo, Leo's entire history isn't included here, so to clarify -- he didn't need to be on an elimination diet; there was no reason to put him on it besides DAN! indoctrination. There's no evidence backing a diet-autism link.

    Modified from the FB discussion:

    If kids with autism have GI issues or food allergies/sensitivities issues, and if those issues are treated, their behaviors may improve -- but because their discomfort has been reduced, not because their autism is ebbing away. And if your child has dietary sensitivities or GI problems, then you should be seeing a specialist for those conditions, not an autism doctor.

    Having written that, it's true there generally isn't any harm to trying an elimination diet besides expense and inconvenience -- but I worry that overtaxed parents will chose that path rather than one with a basis in evidence. And some parents who implement the diet do so rigorously as to put their kids at risk of malnutrition.

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  5. Wow, Shannon! I had no idea you did an elimination diet with Leo! That totally threw me!

    Congrats on the book!

    Jillsmo: you didn't read the whole article carefully, did you? LOL (I've been guilty of that occasionally too!)

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  6. It seems funny that just a few years ago there were WARS on the listserves about this (probably you and I frequented the same ones!). thanks for the perspective - I am so glad parents have access to much more information now than they did a decade ago when my daughter was diagnosed.

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  7. One of the first things I read on TPGA was "How not to fall prey to an autism cult." Which was very interesting reading to me. We had not, but I often felt on the "outside" of lots of parent autism groups.

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  8. Anonymous9:02 AM

    "She gave it a try and ruled it out; we did the same thing. It seems perfectly reasonable to me...? "

    As others say, I would suspect a difficult time arguing with the person you were back then (and I am fully with you now, and was then, that the DAN interventions have no basis in evidence based interventions, and am knowledgeable about interventions). What I discovered, when I tried to argue (in my younger and much more strident self) is that it is all too easy to drive people away at that stage in people's processing of their child's needs, to do more harm than good.

    So, the advice I try to give now is the advice your old self was following 1) do no harm: I am still strident about chelation therapy, for example. 2) collect your own evidence: for something that doesn't do harm -- elimination diets, set your goal points, and carefully gather evidence to see if your seeing the improvements you are looking for. 3) continue evidence based treatments: don't pursue the unproven treatment at the expense of other, more proven treatments.

    The key in what you've written above, for me, is that you are indeed checking whether the intervention was working for L. You aren't deluding yourself that it's working because of spurious correlations and you are checking whether the goals people are promising are in fact coming to fruition.

    I think you are a particularly effective speaker, when you remember what it was like to be where you were when you wrote that letter.

    (I found fascinating, as well, the letter you wrote in response to information that your in-laws had sent you, raising questions about the intervention plan, in which you talked about why you were making the choices).

    (zb)

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  9. Anonymous2:46 PM

    Wow, that is so great. These are major milestones. It must bring so much happiness and joy to see those types of improvements. I hope you check out my blog at www.thecribhub.com where you can find luxurious and affordable baby cribs.

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  10. Melanie Harper5:34 AM

    The only biomed we've done has been dietary changes (GF/CF), and for us, it was fairly woo-free because of family genetics: I have food allergies and sensitivities galore and so do many other family members on both sides. So, having a happier kid who behaved better due to a happier tummy made sense. He was non-verbal at the time and couldn't tell us why he was destroying the room. However, as other posters have said, it wasn't treating his autism per se, it was treating other issues that happened to be a part of my kid's overall physical package. Our family doc approves as long as we supplement to recommended levels. Every 9-12 months or so, we challenge and see, and so far, it's very clear what foods he can and can't have. We didn't expect anything other than better poop - nothing is a "miracle treatment". And, we have changed his overall plan only one thing at a time, as "scientifically" as possible, otherwise how do you know what works and what's a waste of time & money?

    I guess what I'm saying is that some kids will benefit physically and some will not, and that goes for ASD and non-ASD kids. We have some GF/CF friends who are not ASD, just genetically unable to eat certain food. Maybe we should separate out (in our own thinking) food issues from DAN or other 'woo' things??? Trying to improve your child's physical health is not misguided, but viewing any one new thing as a for-sure miracle is sure to be heartbreaking.

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  11. I read with interest your post and the great comments. As a mom with 2 kids that happen to have Down syndrome and Celiac disease I can relate to the diet. It is not for the faint hearted. That being said I did not start the gluten free diet until I got an official diagnosis that started with a blood test and a biopsy for one and just a blood test for the other. My second guy has down syndrome, type 1 diabetes, hypothyroidism...all the things that add to the chance that he would develop Celiac. His blood test numbers were high the first time and even higher the second. The test is called TTG. I was hoping to see improvement in my one guys behavior with a change of diet. Not so much but he did grow 6 inches and gain 30 lbs in a year. This is a good thing because he was so tiny. Good job to all you moms out there working so hard to help your children.

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  12. I'd love to spread the word but my technological prowess leaves a lot to be desired. So, so proud of you.

    As for the 'parent.'......I remember looking up autism on the net when mine were first diagnosed in a complete panic and seeing all those advertisements down the right hand side. I read them all. They all seemed mad. I was mad with fretting. I can see how its so easy to get sucked in.

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Respectful disagreement encouraged.

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