(originally written & published on March 8, 2012)
Dear Parents Of Low Functioning Kids w/ Autism,
I'm writing this letter as much for my benefit as yours. What I'm writing to you today are things that I often need to tell myself every couple of months when I get depressed that my kid is the lowest functioning kid on the block.
If you don't know already, my wife and I have one child, an 8 year old boy with severe / classic / non-verbal autism. He has the expressive & receptive language of an 18 month old and he's been stuck there for a few years now with little significant progress to speak of.
And when I look around at the other ASD kids & families in our lives (forget about the NT families!) and how their kids are making some nice progress (even some of the low functioning kids) I sometimes feel like I must be doing something wrong...or even worse I'm not doing enough to help my kid progress.
Everybody else seems to have found their magic potion that while not always "curing" their kid at least helps "unlock" something in their kid.
For one kid that might be the GFCF diet, for another it may be chelation, for another it may be intense ABA, for another it may be the Son-Rise method, etc, etc, etc.
And I said it before and I'll say it again. 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.
But I feel like I've come to a realization lately. I heard this theory somewhere, but I can't remember where so for now I'm taking credit for it. Ready? Here it is...
Autism Is Like A Cough....
What I mean by that is, there's probably 20 things that make you cough (cold, flu, pneumonia, bronchitis, etc). And each of those 20 things have a different treatment, a different way to make that cough disappear.
In the same vein I think there may be 20+ things that bring on autism, or autistic symptoms or whatever you want to call it. And there may be 20 different ways of treating that autism.
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.
We tried the GFCF diet for over a year (close to 18 months according to the wife's recollection) and saw no improvements. So our kid doesn't have the Gluten / Casein kind of autism. We crossed that off the list.
We did intense ABA for a long time. Our kid got burnt out and regressed. So we don't have an ABA kid.
We tried the Hyperbaric Oxygen Chamber (HBOT) every day for 90+ minutes a day for a month straight and saw no improvement. So we can rule out that something to do with Kyle's oxygen was blocking something.
We didn't do chelation, but we did run extensive blood work through our DAN doctor to test his blood for metals & toxins and saw no elevated levels of mercury or anything that would warrant chelation treatment.
We did all the yeast treatments & anti-fungals and saw no improvements. So we can rule that out.
We treated Kyle with strong antibiotics due to a possible positive test for lyme disease and besides the fact that he had the healthiest stretch of his life (no colds, no infections) we saw no improvements.
I could go on and on...
But the point is I'm crazy to think that we haven't done enough...
We just haven't found what exactly is causing Kyle's "cough" yet. If you have found what's causing your asd kid's "cough" I am thrilled for you and I understand that you want to shout it from the rooftops!
But maybe what's causing your son'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.
So for you parents of low functioning kids keep your chin up! You are doing nothing wrong! They just haven't figured out what is causing our kids' "coughs" yet!
And for the time being the wife and I are taking a break from trying to figure out what is causing our son's "cough". For now we are treating him with meds to keep his aggression & anxiety levels low, and while they are not curing his "cough" they are (for now) making his "cough" less painful & less phlegm-y :-)
And I'll scour the Internet every once in awhile looking to see what the newest autism "treatments" are...or some Autism Daddy reader will send me a message saying you should try ___, but for now we are taking a break.
So, again parents of low functioning kids keep your chin up! Be happy when other people find what "cures" their asd kid's "cough" and forgive them when they shout it from the rooftops. But remember you have done nothing wrong! And you are doing all you can!
You just haven't figured out what is causing your kid's "cough" yet and when you do, please share it with me...but remember it still might not be what helps my son's "cough"
-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20 This way I can make a little money to help pay for my son's after school & weekend therapies. This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!