Symposium Speaker Says Special Diets, Vitamin Therapy and Chelation are "Fad Cures" - What's Your Take?
The article in Consumer Affairs cites Dr. Mulick and one of his graduate students as follows:
Some of the newer, more popular fad treatments for autism involve special diets or nutritional supplements. Megadoses of Vitamins C and B6 are popular, as well as supplements with fatty acids like omega-3s.The implication is that the Autism Research Institute, whose members developed the DAN! (Defeat Autism Now) protocol, are brand new, opportunistic snake oil salesmen, who popped up in response to media attention to autism. In fact, while the DAN! protocol was and is highly controversial, it was developed over the course of decades by a team of dedicated physicians and researchers. And, while some have undoubtedly made a reasonable living by their work, their primary focus has never been on selling product.A casein and/or gluten-free diet, which involves eliminating dairy and wheat products, has also gained favor with some parents.
While many of these treatments have never been adequately studied, that doesn’t mean they aren’t promoted.
“One of the characteristics of fad treatments is that they are discussed in the media and on the Internet, where many parents can be exposed to them,” said Anne Snow, an Ohio State psychology graduate student.
In addition, there certainly have been many studies conducted to test the outcomes of DAN! treatments. It's true, of course, that many people disagree with these findings, pointing out flaws in the research protocols. And those who disagree may turn out to be right. But Mulick doesn't even bow in the direction of those people who have actually done the work and published their findings.
In essence, it seems to me that Dr. Mulick and colleagues would like families to stick to the basics: Applied Behavioral Analysis (ABA) and... well, that's about it. At least, until science proves beyond a shadow of a doubt that other approaches (developmental or biomedical) can be useful in helping people with autism to grow and develop. While that's not an unusual attitude, it seems to me to be disturbingly closed minded.
Of course, ABA has been scientifically proven to be helpful in normalizing behavior. But is that all that we're trying to achieve for our children with autism? ABA is not about building on strength, creating emotional connections, or alleviating the physical symptoms that are so common in autism. ABA is a fine first step for many families. But surely it's not enough.
So, I've written an awful lot - and I'm hoping you'll join in. What's your opinion on Dr. Mulick's perspective? Please share your thoughts!
Comments
I run 9 web forums for people with Asperger Syndrome. The total number of Aspies in these forums are around 700 give or take. (Membership changes everyday).
NONE have reported benefits from any of the fad therapies listed in your article. But those who have attempted them reported everything from “no change” to “feeling funny” to “feeling sick.”
Those who were subjected to a fad therapy at the urging of their parents have since harbored ill will toward their parents.
“fad” is a nomen chosen by you and the media. Some things work for some autistic people, others don’t. What is mainstream medicine offering? Zip. No one is getting rich from autism. Big pharma is already laden with wealth from touting vaccines and other patent medicines which contribute to the toxins that cause autism.
My son was cured of autism using a variety of therapies, including immunoglobulin infusions which are proven to work, and auditory training, which any Dr will tell you is “Bunk.”
Dr. Ritvo at UCLA, autism expert, told me my son would probably never talk and need an institution. My son is in college and has a Hollywood agent for acting and modeling.
Talk about “Bunk.”
I’ll take the “fad” therapies any day over AMA crap.
Well, just for starters, our son LITERALLY would roll on the floor, balance on high objects, and was just OUT OF IT until we put him on the Gluten free, casein free diet at which time he “came back.” He refused to eat many types of food, and when we treated him for the vitamin deficiencies that had to follow from his awful diet, he improved again. Obviously, the American Pscyh Assoc is very threatedned by these children actually getting better.
I think that “Autism” is a label. I think that lable is used to describe many illnesses. My son’s disorder was not caused by a shot he was different from birth. There is a lot of research that would bear out that what my son has is genetic.
I know that the “FAD”s did not work for my son. I also know that there are doctors trying potentially deadly treatments on childeren and the AMA should shut them down. Parents of a child with “autism” are sometimes willing to try anything with very good intentions, trusting that a certified md would not harm their child. Some certified MD’s with god intentions are pushing the envelope a bit to far.
Also theere are snake oil salesman out there. We have seen some. We adopted an approach of trying anything that would not harm.
Watch Ghost Whisperer this Sat. to see how Melinda handles Autism.
Obviously this gentleman is not raising a child on the Autistic Spectrum. Where parents are desparate to recover the child they knew was in there. As far as the current rememdies, I feel that as a parent, you will try anything to help your child. Would he say the same thing of experimental drugs to treat cancer? Each child has a different neurological makeup, an individual fingerprint if you will, how they respond will never be exactly the same. For my son and my family, we do see a difference when he is on a strict Gluten Free diet. This in combination with traditional medications and vitamin supplements, he is reaching closer towards his potential. Without these in place I definitely feel we would be stalled. I know this because we have abandoned at times the “alternative” treatments, not because they didn’t work but out of pure exhaustion and a lack of funds. All the treatments that parents are trying are paid for out of their own pockets. My final word on this is that until you walk in the shoes of the people searching for a way to reach their child….Sometimes you need to look outside the box for your answers. This is just one of the gifts that I have received by being blessed with a child on the spectrum. To all you frightened parents, love them, have faith and trust your gut!!!!
I would like to start by saying that until you are the parent of a child with autism your opinion of science and medicine may be clouded. When our son was diagnosed our doctor told us that there was not much (if anything) we could do for him. He did suggest that if and when his unusual behaviors became a problem there would be medication available to “address” this.
This “medical” approach was unacceptable to us so we looked for other options. The GF/CF diet was of interest to us since our son craved dairy and had digestive issues. While the medical community does not support or promote the diet the results were no less than amazing! Our son has improved to the point that I feel he is recovering from autism. We use speach and occupational therapy as well to make up for the deficits in these areas. WITH ALL DO RESPECT, anyone who would describe the GF/CF diet as “bunk” is simply a fool!
Larry Kolibar
I believe that a GFCF diet works for kids who actually have an allergy to these foods. I don’t believe it is a cure or treatment for autism, and it should not be promoted as such. I have a friend who, as a child, had very strange behavior, and it was discovered that she had a dairy allergy. Her parents eliminated this from her diet, and the behaviors went away. She was not autistic, she just had an allergy to these foods. I have known kids with autism who showed no difference with this diet. So, I think it is perfectly fine to describe it as “bunk” when it is not a treatment for all kids with autism.
Also, I commend this researcher for pointing out the scams in many of these “fad” treatments, since many of them may be dangerous.
Anon.
please educate yourself about “autism” it is just a term used to describe behavior. my son also had strange behaviors until the gfcf diet but these have now stopped (selfharming ecolla etc) he has been allergy tested and is not “allergic” in the normal sense to these foods.
Dr. Mulick has now had his 5 minutes of fame and we can all get back to the important work of helping our kids reach there full potentual.
Hi Moms:
My child is getting better, he is starting to talk again.
My Doctor decided to run further testing and guess what my son has to follow one of the FAD CURES.
apple_m,
I should have clarified: I am a teacher of children with autism, and while my friend’s childhood behavior may have been considered “strange,” it certainly did not meet the diagnostic characteristics of autism. Autism is not a term for behavior, it is diagnosed by observation of a certain set of behaviors.
My son can speak for himself. Once we put him on the “fad” diet, which by the way, was told to us by the NY DPH due to his high lead exposure, he started to feel better. In fact, he would not eat any food unless he knew what was in it – no dairy. From aggressive PDD to Aspbergers with no aggression and loss of his para professional assistants. I’ll take that fad. One more thing AIT is well studied. Look it up.
Austitic newborns many times have moms with heavy metal burden – so ASD can often start before birth. Just because a chilhood vaccination didn’t appear to be the single cause, Rho
Gam shots for pregnant moms could have been the trigger. So suggesting ASD kids born with their challenges must only have a genetic source is not accurate.
Also, gluten and casein (and soy) reactiveness is not an allergy. It’s a metabolism error; the inability to break down these proteins properly – resulting in peptides that enter the bloodstream and have a negative affect on brain recptors. Effects like stimming, spacing out, self injury, etc.
FYI,
Devin’s Mom
I can say that I am a person who always thought that any type of altered diets were strange and would never work. Likewise, unless it came from our family doctor, it was snake oil.
We put my son on the GFCF and he went from wearing a helmet because he banged his head so often to one week on the GFCF and he NEVER did it again.
Seeing is believing. It worked and continues to work.
I have a autistic son who I have watched grow for 36 years. As a young child doctors suggested medication for his behavior problems..I tried it for about 3 weeks and my little boy was not able to play or sometimes even eat dinner because he was so tired. I decided I would deal with his so called bad behaviors and find ways to control them the best I knew how..it wasn’t easy and sometimes extremely difficult..then when he was 12 years of age I put him on the Vitamin B and magnesium therapy suggested by Dr.Bernie Rimland..I saw somewhat of an improvement.We worked his way through school and he graduated in the special ed class..then as he matured, he started having anxiety and panic attacks because he did not know how to deal with his emotions, not to mention severe rituals or some will call it OCD..I did agree at that point to let him take medication to simply take the edge off..but only in small doses..he still takes his medication and I must say..he does okay on it. But, once I started giving him Omega 3, acidolphillis and vitamin B along with the meds..I saw a dramatic improvement. Then after I took a large amount of sugar from his diet..I saw even greater improvement. He doesn’t like milk, but craves ice cream, so the ice cream was hard to take away, but he now realizes it makes him feel terrrible as does wheat. I wish he could do the Gluten Free diet, but at his age to completely take away most of the foods he has eaten his whole life would be too much for him to handle, but I have seen other autistic children benefit from it. We all have to remember..these people are autistic and they will always be autistic..we just have to try different things to help them through life and hopefully make their life a bit less complicated. I am a believer in trying natural remedies first, as well as a good diet without sugars, wheat and processed foods.
Sam’s mom
Susan (Sam’s mom),
I am glad you were willing to comment on the diet and the other alternatives you tried with your son. It sounds like the doctors offered you medication to “treat” your son’s behaviors. Your first hand experience shows that the conventional medical community treats the symptoms not the disorder. While the diet and other alternatives are not for everyone they should not be described as fads, bunk or snake oil. Your experiences and comments support the fact that alternative treatments for this life-long affliction should not be overlooked.
Thanks for sharing,
Larry Kolibar M.A.
My son developed normally until the age of two and regressed to a point that he did not even know who we were. He would stare out windows and drool. Early intervention told us that he was severly mentally retarded and almost too severe to be tested. Until he became ill, doctors told us that he was normal and there was nothing to worry about, that his speech was developin a little slowly. I started ABA therapy with my son when he was 3 years old and we made no progress. He continued to develop more medical problems including seizures and gastrointestinal disease). It was not until we found a doctor who used biomedical treatments that he started to feel better, make eye contact, recognize people, interact, and be in a place where therapists and teachers could work with him in his program. There is no doubt in our mind that the damage done to our child is from mercury. He has heavy metal toxicity and he has shown remarkable improvements from chelation therapy. I don’t know where we would be if we had never done these treatments. It is easy for conventional medicine to ignore what is right in front of them rather than admit the harm that they have caused to thousands of innocent children!
I find it scary that the only recommendation that modern medicine has for parents of children with autism is ABA. ABA very well may help children appear more “normal” but it does little to address the core deficits that children with autism face. We have such a long way to go before parents can feel like someone out there really wants to help. I have been to developmental pediatricians who do next to nothing to guide us, and who aren’t even knowledgeable about different treatment options that are out there. I have been asking the myriad of professionals that work with my son about RDI, and no one has heard about it. If I was able to learn about this therapy, shouldn’t someone who works in the business of helping people with autism?? Good luck to all parents who are out there searching for answers for their child.
As a professional in the field for quite some time, I appreciate the challenges facing parents with children on the spectrum. However, the purpose of a strict research protocol is to make sure that the result of a treatment is caused or related to the treatment itself rather than other things occuring in time with the treatment. This is not “sexy” but it is good science. I have unfortunately seen more than a few parents tell people involved with their child how much “recovered” their child is, only to find they are the only people seeing this recovery. Try things if they are noninvasive or harmful with hope, but do not tout unproven methodologies as a basis for a cure or recovery.
Being a medical school student myself and with all the research I have been involved, i have to agree Dr. Mulick on majority of his view, though some of the lab test is showing mixed result and need to be proved with further experiments.