(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…
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”
Sincerely yours,
Autism Daddy
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I've also come to realize that there are those times when we think we've found something that "works", only to be proven wrong. IE: we think our little one may be talking better only to realize he is going through a time when he has been using delayed echolalia for a while-my oldest dtr will tell me, "Mom, that is tv talk". Then just like that! Boom! He will stop, and we never hear it again. And it seems like in our house we have so many of those circumstances, yet I have yet top figure out why. It varies in different areas of his little life. You would think I would learn to hold back on my hope that we are making progress each time, but I don't. Everyx I think we have taken a step forward, a few wks late it stops and we don't see it anymore. I don't understand what is going on here. Everyone tells me I am wishing too hard, and seeing things that really aren't there. Even his therapists hv gotten to the point where they just look at me and smile now when I tell them "he can do this and that now!" But aren't we supposed to look for the good??? :)
If I were you, I would either stop every therapy and just stay with my child trying to reach to him in my own way--but stay with him, not let him to himself (a month or two); or change that therapist. If she doesn't believe in your son, if she's not optimist about what she can get from him .... how can she get anything at all? We need enthusiast people working with our kids, not people who ust want to get paid for it ....
I know a lot of people say that vaccinations don't cause autism, but what if they're wrong? Its so heartbreaking to think that once a vaccinations done and its in the body doing its 'damage' (for lack of a more fitting word) that it can't be undone. :(( who knows if that could have began kykes 'cough'
Don't worry it's not the vaccines. We are marvellous biological entities and we have spent a couple of hundred million years evolving to understand two things:
1) Stings are bad, keep away
2) Stings can have magic (poison) effects
We have evolved to attribute illness to 'stings' happening up to a few months before symptoms. It is very understandable that the suspicion cannot be shaken intuitively.
Your intuition is working correctly, but that doesn't mean it is right and I hope I've explained it in a helpful way.
You are doing really well to protect your baby from stings and your suspicions are healthy and protective but please believe me if the numbers don't make sense to you.
My feelings on the vaccinations don't cause autism thing is that maybe they don't. Maybe they do in some people. Maybe they don't. Maybe, in general, they keep the majority of people alive and healthy. But not everybody is built the same. The fact remains that there is no one-size-fits-all or even one-size-fits-most treatment or trigger... Everyone is different. I think one of the most exhausting but necessary parts of raising a kid with autism is to keep reading, keep talking, and keep trying to find what works for their kid, themselves, and their family. One size rarely fits all...
As far as the comment author re: stings. Perhaps I am reading your post wrong, but the comment you replied to says nothing of "protecting her child from stings"... The author of that comment just posted her thoughts but didn't mention anything about keeping her child from a jab. Are you referring to shots as "stings"? Or is this just an arbitrary sort of an example, like "widgets" when used in a general example of an item or product? If you are using "stings" as a synonym for vaccines or shots, I think that's rather condescending to an individual who poses a "what if?" question. I honestly don't know of anyone that keeps their child from getting a shot to prevent them from the pain of the IM injection... Also, as a person with autoimmune disease that was triggered by a specific event, and also as a person who lost her cousin to a bee sting (she spent 5 decades without a problem with bees), the example just doesn't seem to fit if you are using it as a parallel to vaccines.
Yes, human beings are indeed marvelous, intricate, and fascinating creatures who have evolved and adapted in some mind-blowing ways. I have to say that one-size-fits-all does not apply to everyone. Most? Perhaps. But not all. Especially if you consider that children are not raised to adulthood in a controlled environment, nor have human beings gone from our beginnings to where we are now in one location, with the same stimuli, same environment, same societal norms/mores, and with the same organisms around them. There is diversity. I believe the author of the comment you replied to, and this blog entry about Autism Daddy's experience and thoughts speak quite well about the fact that one size does not fit all.
As an adult with autism, raising a child with autism, I'm not looking for a cure, I'm not saying that vaccines directly caused his autism, or my autoimmune disease. We do have a genetic enzyme disorder(G6PD Deficiency) that had an evolutionary purpose (theorized, of course) and still exists in a large percentage of the world (and is under diagnosed here in the US due to ignorance and stereotyping) and has only become a (on more than one occasion near fatal) liability when mixed with modern medicine and various foods and additives that are pervasive in our modern society that would have been more likely to have been avoidable by our ancestors. Perhaps that gives me a different perspective on the idea of evolution and attribution of illnesses and symptoms.
Thank you, Bek. Your post makes a lot of sense, unlike Anonymous's.
You are very welcome! :-) I wish I had more answers, or more concrete answers (wouldn't that make parental decision making so much easier! :-)
No, Carly, it's just what you want to hear, is all.
Anonymous, Do you know absolutely what causes autism? No, of course you don't. That is what this post is all about. That none of us do and we try different things that might work based on our child. I don't know if vaccines, genetics, environment or a bunch of others factors cause autism. But telling someone they are wrong and "it is just what you want to hear" is rude and condescending, and turn other people off from anything you might have had to say or any good points you have immediately. Just FYI.
I too have an 8 year ols son. Our only child. He is moderate to severe depending on what aspect of his life we are talking about. He is not potty trained, but, he can speak, a little. But even then he has severe apraxia, so, I am the only one who can really understand him. He is doing pretty wellin school. not even near a second grade level, but, he is further along then I even expected him to get too.
I too believe there are many reasons for autism and many reasons for cures or recoveries.
We did GF/CF, we did some supplements for a two year period. Didn't see much results. We haven't done DAN yet.It's weird but I am afraid to try it. Hard to explain, but, I am so afraid it won't do any good that I am holding back on doing it. Dumb, I know. But, It is what it is.
Take care, Kelly
ABA did very little for him too. Forgot to mention that.
Kelly, I don't think you are weird at all. I always freaked out at the mention of a DAN doctor. There is something very scary about all of those treatments. My husband and I did try to GFCF diet because we knew that wouldn't hurt him, and realized quickly that it didn't work. I truly believe that Autism is something you cannot change, the same way that we can't cure depression or bipolar or OCD. We can find ways to help our children cope, but cure? Like Autism Daddy, I don't want to think about cures I also don't want to know why he has Autism. That might sound harsh, but if I knew I was the reason, well, I would just die :-(
I do not see a harm in trying diets, although I am skeptical about them. Even though I am skeptical, doesn't mean they don't work for everybody. I am, however, concerned treatments out there i.e. chelation (the type given via IV like for lead poisoning), hormone treatments, and saunas. These three items could prove very hazardous to a growing child if not administered correctly. There has already been one death I know of due to chelation. Basically, chelation not only pulls out heavy metals, but can pull iron out of your system and can prove deadly. Just research what you want to try thoroughly. Make sure any data you have is reliable, from an objective source, from someone or someplace that has studied it who has nothing to gain or lose if that type of treatment catches on. Just my 2 cents.
http://cannabisforautism.wordpress.com/2011/12/23/your-childs-autism-will-reverse-or-why-the-kurz-study-is-no-better-than-anecdote/
Kids with autism can have sudden improvements that last months or years and around 1 in 10 is thought to improve permanently to the point where high functioning is reduced to aspergers or aspergers is reduced to PDD-NOS!
Certainly there are enough spontaneous improvers to give the impression that lots of therapies work. There are 3 million autistic people in the USA. Of these, 300,000 will 'improve'. Of those, 30,000 will coincide with a one of 100 treatments. Of the 300 who appeared to have success with EACH treatment, one will write about it on the internet and inspire more to write about it and talk about it. Before you know it, others try it and by chance, 300 grows to 600 and so on...
Wait for the RPCTs please!
Thank you :*( It's been one of those days that I just needed to hear this.....
I love this post, Autism Daddy. I don't think it just applies to low functioning kids, though I do think that it sounds like lots of parents of low functioning kids with autism needed to hear it and it's a message that made me feel much better about choices I have made in the care of my kiddo and myself... I have found that people raising kids with autism tend to be more "lets compare notes" whereas the bystanders- friends, family, colleagues, strangers, etc... tend to get aggressive when they do make suggestions and some of them do come off as though they are suggesting that we are not doing everything we can to help our kids have the best possible chances at a long and healthy and happy life. That drives me bananas. It's not just autism though, I get the same "try this" and "if you don't try this than it's your own fault you are sick or your kid has autism" attitude about autism, type 1 diabetes, RA, and G6PD Deficiency. It is crazy making!
Anyway, I'm working on a blog post about G6PD Deficiency and autism as kid and I have both of those things and our enzyme disorder was not diagnosed until very late (he was 7 and I was nearly 35) and we had both been exposed to many triggers along the way and it's a widely misunderstood and under diagnosed genetic disorder. My whole life I've had these strange physical reactions to various medications and common illnesses that have very nearly become fatal. Now we know that chances of my son being born alive were extremely slim, because we didn't know and because I kept getting kidney infections so they had me on a common and safe-during-pregnancy antibiotic. That antibiotic is usually at the top of the list of medications that should never be given to a person with G6PD deficiency or if there is a chance the fetus may have G6PD deficiency. Now we know. The point is, that while we can't go back and erase this deficiency, from what I have been reading, I think it's worth ruling out as a cause for some kid's "coughs" or at least for "coughs" changing over time. We adjusted our diet (which was an adventure and a half and means that we rarely eat out anymore and it took half the things kid will actually eat off the menu) and I switched medications and were we cured of our autism? Of course not. But many of my labs returned to normal ranges (I had elevated liver enzymes and severe anemia) and my kiddo? He now has the energy levels of what I imagine a regular 8 year old guy is like. In other words: he is no longer hyperactive and completely unable to focus on anything... the meltdowns still happen, but not with the frequency they once did. He is not locked in echolalia but expressing his own thoughts (non stop and he three-peats. I don't know how he has any voice left at the end of the day. But I think that he has mellowed a bit as he now has to process thoughts instead of just spitting out memorized scripts. )... The sensory super-sensitivity is still there, but he is able to self-sooth/manage much better.... So it has made a difference for us, a very positive one. Is it a cure? No. Perhaps can some types of coughs be prevented with genetic screening for this deficiency? Maybe.(I do know that many forms of chelation are contraindicated when G6PD deficiency is present... Is there a link with all of these "cough" treatments? I don't know... I will keep reading though... I do know that this enzyme disorder wasn't even on our radar two years ago and this knowledge means that he is less likely to wind up with the physical challenges that I have developed over the years and that just rocks. And he can use his own words. Three years ago we did not know if that would ever happen.
So that's my "cough" syrup to add to the mix.... I'll gather the information I've been collecting together and post it on my blog and then I'll share it. It was discovered and helped us by sheer coincidence/luck and wasn't even on our radar, hopefully by sharing it can help other people....
Keep up the good work! Your posts really make the tough days less lonely/isolating!
My son is 10 and he too has g6pd deficiency and autism. G6pd deficiency was diagnosed at age 5 yrs old. His doctor was doing a thorough bloodwork to determine if he would be a good candidate for IV chelation. When it showed he was g6pd deficient, the doctor did not recommend IV chelation. We continue to do the diet gfcf soy free, all legume free and have done biomed a-z and back again and still he falls under mod-severe. I still would love to know how to move him along further and just stuck right now.
Wow. I completely agree with you. It can be so exciting/heart breaking to see other children progress/not progress with some of these so called miracle treatments, and not see the same results with the children you care for. Thank you for your insight in to your world.
Thank you for this xx So often I feel like we arent trying hard enough but sometimes just getting through a week can be hard enough without constantly battling, trying to 'figure him out'..
A most excellent post AD, I agree with you in that I believe there are different types of Autism - which after all is no more concrete a thing than a set of observable behaviours - and I think my boy has the "boy with some weirdo genetic stuff going on and an enlarged head" kind of autism, as does your Kyle I guess.
I really needed to hear this today. Thank you. XXX