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what’s the deal here? March 16, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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okay, we’ve been doing this whole gluten free casein free diet for 3 weeks now. I am stopping to ask myself at what cost? What am I expecting to accomplish? I thought that I was seeing improvements at first. Was I imagining that? It’s not like autism is quantifiable. Perhaps if he was a number on a scale, say a 34, and by doing this diet for 3 months would bump us up to 38 or a 40, it would be worth it. I’m not seeing that. Initially, I thought that we were seeing improvements in focus and fewer tantrums. Yes, there should be data collection involved in this but believe me, at the end of one of these tantrums the very last thing that I am thinking is, ‘let me record this on a whiteboard’. What I am usually doing at that moment is praying to heaven above that I can gather enough information and perhaps some insight from that moment to make the next time better. Lets see how much time and effort went into this diet today. Spent time finding a gluten free hamburger bun recipe. Bought the ingredients at PCC while Oliver was at school and my mom was watching E. Spent a fortune. Came home and put the 14 obscure ingredients in a bowl, mixed, waited while they were rising. Cleaned the mess up. Baked them. About 2 hours elapsed. Oh, did I mention that I did this one handed as I had surgery on my left wrist? (can you sense my irritation?) All in all, they were okay. It was nice to have a home baked item as a part of dinner. I do know that everyone appreciated them as well. But the bigger question is…is this worth the effort that I’m putting forth? What else could I have accomplished with that time and money? I could have done a fun activity with my mom and the boys. Also, is this worth the sacrifice of the rest of the family? The nearly unpalatable breads, sending Julian and his friends to the garage to eat girl scout cookies so as not to upset O, the tantrums over food. We will persevere until Easter and then revaluate. There is just no well researched data that is making me stick to this for our family beyond what we allotted for. If you have any concrete information to make me stick to this further, PLEASE let me know. I would also love feedback on if I decide to reintroduce gluten or casein back, which it should be?

On a different note, I feel fantastic! Less general inflammation, more energy, less bogged down.

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Comments»

1. Mom - March 16, 2010

Congrats on being quoted in the publication! The one thing I think I am noticing positive is that I haven’t seen a tummy ache since my outing with him a week ago Friday on Bainbridge. You have a better read on the behavior thing, but mostly when I see him, he seems to be quite focused these days (except for yesterday morning!). See you tomorrow. Love, Mom

2. xine - March 21, 2010

Hello, I just came across your blog today and am very moved by your stories. I work in autism intervention/respite care, have engaged with about 100 kids all over the spectrum, currently work with three boys from two families, and am always trying to read more about ASDs and the families impacted by them.

As far as the GFCF diet goes, the data is sadly scarce. The results I’ve personally seen are mixed, some kids have seemed to react quite well to them (but they are also done in conjunction with behavioral therapy), but most kids I’ve seen go on the diet don’t make any marked improvement. It is certainly worth a try, but if you don’t see results soon (three weeks is a while), than it may be just another difficult thing your son needs to deal with.

The one thing I have definitely noticed about certain intervention techniques, such as diets and supplements, is that the parent’s attitude regarding the treatments greatly determines the “impact” of those treatments. If the parent starts treating their child like they’ll improve, and begin holding them to a higher standard, they usually report seeing their child improve. If the parent is skeptical of the treatment, and therefore doesn’t treat their child any differently, the child doesn’t make the same improvements as the parents who are more optimistic. Kind of like the placebo effect, transferred from parent to child.


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