Tuesday, September 12, 2006

autism, allergies, diet

So I have two sons (ages 4 and 6) who have both been diagnosed in the autism spectrum. And a couple of years ago, my wife and I started using a program called Relationship Development Intervention (RDI) to help them. Long story short, my four year old has done amazingly well on the program, while my six year old seems "stuck" in some of the earlier stages. Actually, we're going back now to make sure he has some of the really basic skills down before we try some of the more advanced stuff again, but that's a story for another post.

Anyway, my wife had been doing this research, looking into the role of toxins and allergies on autistic children. There seems to be a movement (I believe it's called Defeat Autism Now or "DAN") that believes that autism is entirely caused by this kind of stuff. So we take our sons to have them tested -- to see if they have any of these allergies or unusual toxins in their system. And it turns out that they do. In fact, they have a large number of reactions to a wide variety of foods -- including wheat (gluten), milk (casein), soy, corn, chicken, eggs, and a long list of other substances. Plus there are these vitamin supplements he wants us to give them (like 22 of them), some "probiotic" pill to create a healthier balance between healthy bacteria and yeast in their system, etc.

OK, so here's my struggle with all of this. First of all, I'm not sure I really believe there is any link between these "allergies" (none of which have ever caused any noticeable reaction in our children before) and their autistic symptoms. Second, the kinds of intervention being requested (particularly the dietary ones) would require drastic and expensive lifestyle changes. And third, how in the heck are we supposed to get 22 pills down the throats of young boys who won't swallow pills?

Or (to pose the more difficult questions), to what extent is my reluctance selfish? To what extent is my hesitance because I don't want to have to change my diet, or to put up with their tantrums when they can't have their favorite foods anymore? I'd be dishonest if I didn't admit these issues play some role in my thinking.

But of course what I ultimately want is just what is best for my kids. I worry, though, about making all of these changes for naught. I worry about falsely believing that the dietary stuff is causing them to get better, when in fact it could simply be from normal maturation (or the other interventions we're doing). I worry about the stress. I worry about the added financial burden. And I worry about constantly having to check, to be always thinking about whether some food at a restaurant has wheat, corn, chicken, or sugar. Or perhaps better, I worry about having to find foods that actually DON'T have any of these things.

And I worry that somehow not doing these things would make me a bad parent. And there's the brutal, terrible rub.

7 comments:

seeker said...

Hi:

I don't have the allergies that your sons do, but I am sensitive to wheat, soy & dairy. I understand it is quite difficult. But, a resource that may help you is a magazine called Living Without. You can find it at Wild Oats, probably Whole Foods, and they have a website.

You might also want to have your children tested for Celiac Disease if they have any of the symptoms that are signs of Celiac.

Unfortunately, wheat is in many things that you wouldn't think about, e.g, white vinegar and some vanillas. (wheat based alcohol, eg.)
My thought is, it can't hurt your children to try the diet and supplments, and it may very well help them. So, why not give it at least 6 months?

Anyway, blessings on your family.

steve westby said...

seeker -- many thanks for your comments. I'd be curious to know what improvements you noticed when you made the changes to your diet.

Steve Smith said...

Dude! Seeker makes a valuable point; why not try it and find out?

And in six months, why not give it another six?

With respect to Seeker and to you, if it were me, I'd be having a lot of the same reservations you expressed. You want some ROI (return on investment) if you're going to be making this not insignificant upheaval in your lives.

And (again, with respect) Seeker's experience does not intersect with the dietary impact on autism. In his case, we're probably talking about a reduction of unpleasant symptoms, i.e. sleep disturbances, cold-like symptoms, digestive problems, poor energy levels, etc.

We've talked about this, and my gut check remains the same. Show me some empirical (NOT ANECDOTAL) data here.

A friend of ours was just diagnosed for the second time with cancer. She has announced that she is not going to have the lemon-sized tumor removed. She is not going to have radiation or the doctor-recommended chemo. She is going to healers, and she is going to treat it with diet and meditation.

I fully expect to attend her funeral in the next few years. I truly hope I am wrong.

Sorry; a bit of a tangent there. But my point is that there's a lot of "holistic" treatments out there being pushed without a lot of hard science behind it, and I am (perhaps overly) skeptical. Take a walk down the vitamin aisle at Target one of these days, and you'll see that the profession of snake-oil sales is alive and well.

I will admittedly state that I have a vested interest in making your and your family's life EASIER, and not harder. And ROI-wise, I'm just skeptical, that's all.

That having been said, I'm not an extremely smart man, and there's a high degree of probability that I am eight kinds of wrong.

Love ya, man.
Room.

seeker said...

Hi:

Fortunately, my symptoms are much milder, such as skin conditions which show improvement with being fairly consistent about the restrictions. I do know someone who, until her 50's, had fairly severe eczema, went off wheat and it went away, and it stays away as long as she is strict about wheat. I haven't been able to completely give up dairy products, but have switched to rice milk and sheep and goats milk cheeses and yogurt, so still some sinus stuff going on. I do notice that that improves if, for some reason, I don't consume much dairy for a few days.

The problem in this field is that it's not being studied because most of the money comes from drug companies. Not surprisingly they most likely do not want people to know about non-drug alternatives.

That said, I do understand your hesitation, and with the number of allergens that they react to, would starting with 2 of them, say wheat and one other make it more doable? Then when your comfortable with that (say after a few weeks or a month), eliminate another one.

There may also be a celiac support group in your area that could help you. Again, I highly recommend Living Without. There are also more cookbooks coming out that take into account these types of restrictions.

Steve, as for your friend, we all have to make a choice about what healing modalities we use. You and I might do the alliopathic path and the holistic path together, but neither of us lived through her previous treatment - only she could do that. Maybe everyone in her life should pray for her and envision her being healed. Again, it can't hurt, and, it might actually help. (And, this has actually been studied - prayer apparently does have a healing effect.)

Blessings.

seeker said...

Oh, and as for the vitamins and minerals, I would not recommend deciding on your own which to take. Someone should always follow the advice of a physician (particularly a holistic practicioner) and/or a good nutrionist.

Meg said...

I have absolutely no imput on your dietary questions but, Steve, I wanted to say thanks for your participation on my blog and, as I'm finally getting around to reading blogs again, I'm glad you are contributing to the blogosphere.

Meg

more cows than people said...

Steve,

I'm reading back posts now and I just want you to know that, I'm told, that being a parent is one of the hardest jobs in the world. And this dilemma is a case in point. I totally get the struggle and appreciate your honesty about it.

I'm not sure when you posted this, but I'm wondering where you are with all this now.

Further, I was a kid who couldn't swallow pills and I wasn't anywhere on the autistic spectrum and I had to take some meds, teeny tiny pills, and it was SOOO traumatic. I still can't eat my mothers homemade apple sauce without tasting those pills. What a shame. SO... the vitamins piece of it seems way beyond doable, imho.

Blessings on all your discernment.