Autism: When To Throw In The Towel On The Diets & Bio-medical Treatments
January 8, 2016
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Now Reading: Autism: When To Throw In The Towel On The Diets & Bio-medical Treatments
January 8, 2016
(originally written & published January 8, 2016)
This is not a post that is bashing the GFCF diets and other biomedical treatments. I’ve recounted in a previous blog post that we tried lots of biomedical / DAN “Defeat Autism Now” doctor stuff with the king in his younger years with autism. (I believe the term “DAN doctor” doesn’t exist anymore and it is now called MAPs doctors?).
Anyway, You can check it out that post and read how we tried pretty much everything GFCF diet, hyperbaric oxygen chamber vitamin, B12 injections, etc. etc. etc. etc.
When he showed no improvement with any of those things we stopped trying and stop going to those kinds of doctors a few years back with no regrets.
And over the years I’ve noticed something.
I’ve noticed that as the king has gotten older and we have birthday parties for him and holiday parties in the school with kids in his class we never have to worry about special dietary restrictions anymore.
When he was younger we would always check to see if there was any kids on the GFCF diet or any other diets and lo and behold in every class or at every gathering of autistic kids there was always two or three.
But the king is now 12 and in a classroom with severely autistic kids between the ages of 12-14. And I’m pretty certain that none of them are on the GFCF diet. And I’ll bet if I polled the parents that none of them are doing any bio medical / DAN Dr. approaches or protocols
And I think my observation is that it wouldn’t shock me if we never run across a kid 12 and older who’s on the GFCF diet and/or continuing down the bio-medical path.
My thinking is if your kid had success with the GFCF diet or other biomedical approaches, maybe your kid improved so much that he probably won’t be in the severely autistic class with my kid so we wouldn’t see him.
And if your kid didn’t have success with the GFCF diet or other biomedical approaches and he’s still in the “low functioning” classroom like my kid, well then why the heck would you still be throwing your money out the window. 🙂
Basically, we all can admit that the diet is expensive (and difficult) and most of these bio-medical approaches are expensive (and difficult). So after years of no success there’s nothing wrong with pulling the plug I say.
And let me say again that I think that the diet and some of the other biomedical approaches are definitely worth trying. It’s almost a rite of passage for autism parents these days to try this and that. And I don’t want to be the guy to tell you not to try something that could really help your kid. And I have very few regrets for trying some of this stuff on the king. My wallet has HUGE regrets, 🙂 but not me.
I wrote this in a previous blog post called “Autism Is Like A Cough.”
I believe that some of those things work! When people rave about the amazing improvements in their kid after ___ treatment I don’t think they are lying… and I am truly THRILLED for them I understand that they want to shout it from the rooftops!
But maybe what’s causing their kid’s autism is different than what’s causing mine.
Do you really think that the asd kid who showed significant improvement with the GFCF diet would also have shown significant improvement through chelation? Do you really think that the asd kid who started talking after 20 “dives” in the hyperbaic oxygen chamber would also have started talking after 20 sessions of neurofeedback?
Now, assuming you believe those things work than each of those kids had a different kind of autism… one that was helped by gfcf, one by chelation, one by oxygen chamber, and one by neurofeedback. And we spent the better part of 4 years trying to find the right treatment to “unlock” my son Kyle and help him make some improvements.
But as my son gets older I just don’t see or hear about kids in his circle doing any of these approaches. And when I think back to the days that we would go to the doctors I never remember seeing a kid over the age of nine (?) in any of the waiting rooms are on their websites.
Again my point here is if you did use these approaches and your kid had a nice, I don’t want to say recovery, but a nice boost in functioning level then he probably wouldn’t be in my kids classroom.
Maybe the moderate to high functioning classrooms of 12 to 14-year-olds have kids who are still doing the diet and biomedical approaches? And we just don’t see them?
Now, a quick note, I know some people have their kids on the GFCF diet (or other diets) for other reasons (celiac disease, digestion issues, etc) and of course that makes perfect sense. I’m just talking about the parents (like me) who started their kids on the GFCF diet hoping to see huge cognitive gains and/or behavior gains. If you didn’t see them after 2 years, you’d throw in the towel, wouldn’t you?
I kinda don’t know what the point of this post is. However, it’s been rolling around in my head since May when we had my son’s birthday party with all his ASD friends and for the first year ever we didn’t have to buy a GFCF pizza. Mostly all the same kids… which I guess means that one or two more parents threw in the towel and gave up after quite a few years of trying the diet.
I’ll just leave it at this…
I said before that I don’t want to be the guy to tell you not to try something that could really help your kid….
But on the other foot, I do want to be the guy to tell you, and maybe the only one to tell you, that it’s perfectly ok to throw in the towel whenever you or your kid gets burnt out on all the biomedical treatments. That doesn’t mean you’re a bad parent and it doesn’t mean that you’re giving up on your kid. It just means your a realist, and you are looking at your kid, and his/her functioning levels, and the odds and your wallet and making an educated guess that throwing in the towel, and spending that money on something else (a trampoline! 🙂 is the right thing to do and a better thing for your kid and your family.
As far as me and my kid. Will we ever try another bio-medical treatment with the king?
I dunno. Every once in a while, someone will send me a link to some new protocol and I will read up on it and watch the “before and after” videos and get excited…
but then today as I was researching DAN doctors for this blog post I saw some of the “recovery” videos about the B12 injections… the same videos that I watched 9-10 years ago when we first went down this biomedical path with my son, and I remembered how excited I used to get watching those videos and the disappointment that I felt when he showed no improvements… same thing would happen with every new protocol.
I’m not sure if I could put myself through that any more. I guess if I had first hand account of a kid that I knew who was like my son, and improved after some new protocol that we haven’t tried I might jump back in…but I guess I’m done with the rest…
That’s it. The END…
Totally didn’t mean for this post to end on such a downer. In fact I had no idea where this post was headed and this is where we ended up….oh well, hope y’all enjoyed it and it made sense…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).