Kristina Chew just mentioned this book on her blog: Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, Paul A. Offit, M.D.
I appreciate that there are scientists who are challenging the idea that autism is caused by some kind of toxicity in our children. I'm not a scientist or anything, but I just know that my son's autism wasn't caused by a vaccine, or that it's aggravated by his consumption of red dye #40 or anything like that. I don't have the time to challenge all the ridiculous ideas that are out there, but I'm heartbroken when I see the likes of Jenny McCarthy and her crazy ideas getting publicity. I cringe when I hear parents talk about "curing" or "recovering" their autistic children. I'm thankful to know there are thinking people like Dr. Offit and Roy Grinker (who I might get to hear speak next month!) putting forward what I consider to be much more logical explanations about the autism "epidemic".
11 comments:
My boys were all born with their autism stuff. but artifcial colors/flavors do very much aggravate Ki's SID- used to give him hives and respiratory distress, but not so much anymore.
I think there is no one cause or one trigger for autism. It's different with different people.
and the whole 'cure autism' idea really bugs me, too. My kids aren't sick or defected and don't need to be cured or fixed.
(p.s.- artificials don't seem to bother the other 2 boys at all)
Hi Kaber, Sorry if my comment about red dye sounded rude or anything. There are people who have food allergies and sensitivities and we parents are the ones who are best able to pick up on them.
While Samuel eats a relatively good variety of foods, for an autistic child, I know that he could eat better, especially less sweets. Sometimes I wonder if I cut down on the sugar or carbs if that might improve Samuel's attention.
I know there are other people who read this that have their children on special diets and I'm not critical of that. What I am critical of, and feel sorry for, are the parents who, once they get an ASD diagnosis, feel like they have to go through this gauntlet of diets, supplements, therapies, etc.. to "cure" their child.
I wish there were more people who looked at autism as a learning difference rather than as some kind of "disease" or "damage" that had to be cured. I get frustrated with folks who jump on that bandwagon, especially "doctors" and celebrities.
Heck, I get frustrated with ANY bandwagon, not just the ASD one...
i totally agree....it makes me sad to think that the celebrities & bandwagon docs might b influencing parents of newly diagnosed, autistic children....giving them the idea that their child's autism is a "disease" & that they need to b "cured"....instead of teaching them to embrace their child's autism & to love their child for what they are (just like u're doing!) :0)
Laa, I found this post very refreshing. It seems that once you are inducted into the "A Club" there are throngs of people that come out of the woodwork trying to pitch methods, cures, treatments, etc - and I'm certain that there are a large number of charlatans preying on vulnerable and desperately hopeful parents.
All that being said, what bothers me more than anything is the attacks made by A Club members against each other. I can't tell you how often I've encountered the overzealous GFCF parent who insists I'm not doing everything I can to help my son because I've not tried the magical diet. Or the bio-medical parent who is certain that my son is loaded with lead, mercury and God knows what else. How about my pediatrician telling me that I caused this when I had dental work done during my pregnancy. And then out comes Jenny McCarthy with her published editorial about healing her son. ARGH! I just wish folks could be a bit more supportive of each other ... I mean don't we all have enough to feel bad about without the additional burden imposed by folks who should have some empathy?!
Sorry for the rant. Your post just really hit home with me. Well done.
I am not going to give you a hard time because I think you are right. There are children who are born autistic and different from birth. I completely believe your assertions about Samuel and Kaber's assertions about her boys and Mama Skates and Carolyn.
Pamela was not born autistic. I have read enough biographies of autistic infants and Pamela never fit them. She was born healthy with Apgar 9/9 and nursed within the first hour. She did not have colic and was sleeping through the night by five weeks. At her six-week check-up she smiled at the pediatrician. I do have video clips of her before her MMR playing peek-a-boo and hiding games with us.
The signs of autism and round of illness (nausea, vomiting, ear infections, candida diaper rashes, sinus infections, and rashes) worsened with each exposure to thimerosal. When Pamela had pink eye, we gave her eye drops that contained thimerosal and a week later I took her in for more vomiting and a rash all over her body. By the age of 18 months, we already had her seeing an allergist for all of her illnesses. During this period, she became slightly tactile defensive (would only let us hold her if we gave her vestibular--dancing with her, bouncing with her).
At 15 months, she had the MMR on the same day as DPT. That was a mistake. She zoned out for the rest of that day. She felt better the next day but she slowly grew aloof to us after that. Within about three months, the green nasty stools started too.
Pamela is 19yo, so we did the diet before it went celebrity. The green nasty stools disappeared after we put her on the diet! Pamela is still on the GF/CF diet because she did not potty train until two weeks after starting the diet. When she ate the wrong food, one of several reactions was loosing bladder control! Highly concentrated apple products (juice, sauce) caused insomnia. We were able to prove that cause and effect, too.
At first we did a ton of supplements to treat her candida and her chronic eczema went into remission! I was told she would always have. She does not! We no longer have her on supplements except for soy yogurt (good bacteria for her gut), but she does stick to the diet.
We did not do secretin because the diet and Candida was enough to clear up her bowels. We did do chelation by pill, and I am not sold on that. I did not see enough improvement on that to be sold on it.
Tammy, it is experiences like yours that keep me from saying things like, "autism isn't caused by vaccines." I really believe that Samuel's autism was not caused by a vaccination, but there is no way I can say to a parent who has the evidence like you do that your child's autism was not caused by a vaccination, or to an allergic reaction caused by a vaccination. I know a mom who tells me that her son's seizures began right after he had his MMR vaccination. There are others close to me who think their son's autism was caused by a vaccination. There is no way that I'll ever argue with a parent who, with evidence, tells me their childs autism was caused by a vaccine.
I do, however, have a problem with people who claim that the current "autism epidemic" is caused by vaccinations. I just don't think the evidence is there. Do I like the way vaccinations are being done now, so many done at one time and so many different kinds given? Not necessarily, but I've never had a problem with it so far. I don't always have my kids get every single vaccine that is recommended. I'm sure that it is a very good idea for the whole vaccination process, as it is being done right now, to be reviewed. After all, government mandates or suggestions have been known to be faulty before...
After I started this blog, maybe 7 or 8 months ago, I took a look at some old videotape of Samuel. He was about 9 months of age and he was sitting up, pulling books off a low shelf in my kitchen, and smiling at me as he was doing so. He looked so "normal" for a child his age that I was stunned. My memories of Samuel have always been that he was "different". I still believe that though, that videotape was just one little "snapshot" of what he was like. It's just that the degrees of his differences have become greater as he has gotten older. I wonder if it's like this with other infants who have other conditions, like Downs Syndrome, for example?
My sister in law (who also has an autistic son) told me in a conversation a long time ago that she thinks what is now being called "autism" is really several different conditions. I'm inclined to agree with that, and perhaps within that are children who have strong sensitivities to certain substances or foods. Hopefully it won't be too long before we have more answers.
In the meantime though, I will continue to challenge those who think all of our autistic children are somehow poisoned, sick, "lost", and that others are responsible for giving them all these "services" and compensation for that.
Here I go again.. I'm going to get myself in all kinds of trouble that I don't have time to explain my way out of right now!
Thanks for your comment Tammy, and for sharing your experience. I hope that you don't take what I am saying as being against your opinions, it sounds like you don't.
Carolyn, I know what you mean about "A-club" parents being against each other. I'll share quickly with you.. I am on a yahoo group of parents and others who live with autism and the nastiest thread of discussion just came up because one parent felt compelled to get into a discussion of who would be the best politician to support in the upcoming presidential election to help us and our children. I tried reminding her and others what the true purpose of the yahoo group was.. to help our kids live better lives and that there are too many political and philosophical differences between each of us in that group, that we should be respectful of those differences in each other. WELL.. the posts just got really nasty after that and when I appealed to the moderator I was told just to ignore it! (Actually, that was the only thing that worked.. the ignoring) I think there needs to be much more public discussion and debate about such issues, but I just don't think it was appropriate for that particular yahoo group.
(Sorry for such a long commment.. I probably should have just done another post!)
My eldest is CF free. We got the "some children with autism are like that" speech about his constant diahrea, vicious bum rashes and nightmares/terrors.
Which cleared up instantly 48hrs after we stopped the dairy.
1 week later dh put a tiny bit of butter on a freezer pancake and the child spent half the day in the playpen since there wasn't an object hard enough for him to slam his head off of and the screaming... lets just say I sat there and cried the entire time.
That night at supper, while his Dad was bbq'ing off the front porch, he was totally calm, looked at me through the door, bent down and slammed his head off the concrete porch hard enough to bruise and swell.
Saying that - #1 - it did NOTHING for the severe, non-verbal one except make him lactose intolerant.
#2 - IT IS NOT A CURE!!!!!
#3 - we have a family history of IBS and my bro cannot have dairy either. Makes him throw up and aggravates his IBS.
#4 - gluten did NOTHING.
Their ASD started at birth and although the eldest appears "normal" to an outsider... his quirks, will never totally go away.
S
i came back to check in on the other comments & i'm glad i did - tammy, i agree with laurie & i hope that i didn't offend u...i've also wondered if "what is now being called 'autism' is really several different conditions"...i too will never discount a parent that has evidence that their child's vaccinations played a part in their autism...there are so many questions - so much left to learn
Yep, we're all crabs in a bucket sometimes, but I think I had been using some of the "wrong" terminology like curing and etc. without realizing what NUTBALLS were out there using the same ideas.
I want my children to be healed and more whole but in terms of cure, that word bothers me now because I think past a certain point it lacks acceptance of who the child IS.
Hard to explain, but I think *most* of the club gets it LOL!
Mrs. C - I know what you are saying. People hear the word "anti-cure" and think, "oh my gosh, what are these people doing to their children?!"
Ari Ne-eman of the Autistic Self Advocacy Network addressed this erroneous way of looking at the "anti-cure" way of thinking with this quote in the interview he did with Deborah Roberts back in June, (I did a post about it.. ) "Anti-cure does not mean anti-progress." Of course we want our children to learn and to grow and to learn how to get along in life. We just accept that they have different ways of learning, thinking, and doing things. They have greater challenges in communicating, which can get in the way of their learning and functioning.
Do we go around talking about "curing" our little neurotypical children because at age 2 they aren't potty trained, aren't speaking properly yet, have temper tantrums all the time? Of course not!!! However, we do have the very big job of TEACHING our children. It's the same thing with our autistic children.. we just have the fun of them taking a little longer to attain the typical milestones (and often with very different WAYS of attaining the milestones).
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