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Feds Warn Against Unproven Autism Treatments

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Dr. Maryellen Markley, left, looks on as Maluhia Ehrgott, who has autism, prepares to take part in a 2007 trial of hyperbaric oxygen therapy with her mother, Carrie Ehrgott. Now, the FDA is warning that the therapy -- which involves breathing oxygen in a pressurized chamber -- as well as a handful of other treatments promoted to those with autism are risky. (Marco Garcia/Chicago Tribune/MCT)

Dr. Maryellen Markley, left, looks on as Maluhia Ehrgott, who has autism, prepares to take part in a 2007 trial of hyperbaric oxygen therapy with her mother, Carrie Ehrgott. Now, the FDA is warning that the therapy — which involves breathing oxygen in a pressurized chamber — as well as a handful of other treatments promoted to those with autism are risky. (Marco Garcia/Chicago Tribune/MCT)

The Food and Drug Administration is warning that many products claiming to treat or cure autism do not work and may present serious risks.

In a notice to consumers, the agency said it has warned several companies that they will face legal action if they do not stop peddling products to the autism community using false or misleading information.

The FDA specified five therapies that may “carry significant health risks” and commonly rely on false claims in marketing to those with autism — chelation, hyperbaric oxygen therapy, miracle mineral solution, detoxifying clay baths and CocoKefir probiotics products.

While there are legitimate therapies and interventions to ease symptoms of autism, there is no cure for the developmental disorder and the public should be skeptical of any treatment advertised as such, the agency indicated.

“Existing autism therapies and interventions are designed to remedy specific symptoms and can bring about improvement,” FDA pediatrician Amy Taylor said in the notice.

Consumers should be leery of products that claim to be a “quick fix,” those that purport to treat a wide range of conditions and anything advertising a scientific breakthrough or a secret ingredient. What’s more, personal testimonials should not be seen as a substitute for scientific evidence, the FDA said.

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Comments (22 Responses)

  1. vmgillen says:

    Great. The FDA issued a warning… which they’ve done before, along with a laundry list of others. If the kids are endangered a lot more is merited! People are making big $$$ on these “cures” and a warning will not have any effect at all.

  2. soricobob says:

    I guess, with all the idiots thinking that just about anything can “cause” autism, the government feels they need to “warn” people of potential scams. Since so few people trust the government, I’m not sure if it’s a good thing.

  3. JJD says:

    We used chelation on son, when he was 5 or 6, now 15. And I felt that it was quantifiable in that we could see the lab results of lead and aluminum, then finally mercury being pulled from the system as the treatments progressed. In addition he also became more verbal during these treatments, and he retained his speach whent he treatment was done.
    Chelation, I beleive their are several types. We used a suflur based amino acid that was mixed in his food.Very impressed with the results.

  4. Lela says:

    So, why not tell us WHY these things are risky instead of just saying they are? Why is breathing oxygen risky…?

  5. SL says:

    We too used chelation several years ago and saw more verbalization and an increase in flexibility. No, it doesn’t cure ASD, and it doesn’t work for most kids, but every little bit helps.

  6. Kathleen Kinsolving says:

    So tired of the phobia — trying to cure autism like it’s a disease — let’s stop the discrimination against autistic people, and join in the fight for their acceptance and inclusion!

  7. eve says:

    I firmly believe until results of significant research involving double blind studies( note the plural) is quantified there is no evidence that these are the treatments that helped lessen and certainly not cured their childs autism. if you are pursuing other therapies like aba, floortime, speech,occupational, or sensory intergration even, at the time in which you use, say, for instance, hyperbaric treatments or chelation who is to say that that is not the reason for the improvement. or that the marked improvement documented by parents isn’t just the passing of time and the child becoming more mature, or their brain becoming more able to switch around deficits of certain skills to areas of the brain normally wired to do something else which is known as brain plasticity…. in the case of children born with only one brain hemisphere, that hemisphere can and will be easily trained to take over all the tasks the other hemisphere usually handles, along with its own known tasks, with ease. sometimes with no interventions whatsoever. if this is well documented research based evidence of our brains power and you include a family willing to go to the ends of the earth to help their child on the spectrum( and keeping in mind that we only end up using a small portion of our brains capacity in our whole lives) I can easily deduce that many children on the spectrum would improve perhaps by exposure to neur- typical processes all on their own.. with their loving families support of course. now after having said all that… I do not think its anyones place to tell parents what they should or should not pursue in the quest to improve upon the quality of their childs lives. but because, for instance ,pure oxygen is highly explosive, or feeding your child sulphur to chelate out toxins from their child sounds like a bad even dangerous idea, especially knowing that this is what your kidneys and blood and liver do all our lives, it behooves the FDA to at least issue these types of warnings. if they did not, and something terrible started to happen as a result directly linked to these types of treatments, and it could be proved that the government knew of even a hint of danger, you can only imagine the outcry. talk about no one trusting the gov?! but mainly what bothers me about these types of treatments that little is known of scientifically and qualitatively are two rather important issues: first, is to make sure that any person seeking treatments of these types must understand that autism isn’t able to be cured. not even close. lessened maybe or made more manageable but not completely alleviated. and second, is the cost in money and time to the family. the money is such a huge factor but has already been covered as the resource most needed by all families with the affected children. so we turn to time. there is an old saying that you can always make more money but you cant make more time….. time spent going to and from and waiting and doing the treatments at times of day when you could be somewhere else perhaps with friends, siblings, pets, church or on vacation or at the park instead of endless rounds of going to appointments, and making phone calls, finding the best place to go or searching for the supplies needed or hunting down information on the web or searching for a doctor willing to help you proceed with alternate therapies. its just sad and very hard on the family. if you can honestly sit and say that you have seen no improvement after conventional therapies have been implemented and given time to work and you don’t have anything else going on like a job or other siblings or an aging parent and piles of money laying about needing to be spent then by all means have at it. but the rest of us affected by our childs diagnoses would like a quiet nite at home eating a homecooked meal maybe watching your boys favorite movie for the thousandth time and then getting them to sleep( finally) all the while marveling at the unique and delightful person this child already is… just the way they are.(no offense at all to every family out there wanting and willing and striving and getting any of the treatments mentioned. you are that childs best hope and you must do what you feel is right!)

  8. Jon K. Evans says:

    My late father said that a teaspoon of honey and a teaspoon of mineral oil used every day could cure ASTHMA! Therefore, I understand the danger of this, and any FOLKLORE CURE.

  9. Dawn says:

    Many children on the spectrum have improved, some significantly with their autism symptoms with the above mentioned treatments as well as other medical treatments which btw used to be considered mainstream medicine. Why is the FDA so gung ho on preventing parents from healing their children from the known underlying medical issues that caused their children’s “autism”??? The FDA’s advice is not wanted nor appreciated since the FDA is the MAJOR reason why we now have an autism epidemic.

  10. CC says:

    I give kudos to those in this discussion. It was civil and respectful. I wish all comment lines involving autism were like this. Thank you, all, of you.

  11. Lisa says:

    Our son received ABA from the time he was 3. Ours was the first home program in our rural area. We stuck with the principles of ABA throughout his life – not easy, but we constantly tweaked behavior plans, were consistent with praise and consequences – and he made amazing progress. He graduated from high school last year, holds a part-time job, and volunteers in our town. There is no quick fix, no magic pill, no cure for autism. However, our consistent, scientifically proven approach brought our son so far. We were desperate when he was diagnosed, but never resorted to invasive treatments that were scientifically unproven.

  12. KC ASD mom says:

    Untill there is definative proof one way or another as to what the causes are, I don’t see that the FDA or anyone else has a cure so parents should be allowed to do crazy stuff life feed their kids healthy food, give them pharmacutical grade nutrients and use treatments “off label” just as is done for many other disorders with unknown causes and outcomes. I don’t see that anything listed in this article is harmful and it would be even safer to do things like chelation if doctors were encouraged to guide the process. I feel like those of us who choose treatments besides medications and basic therapy are outlaws. I shouldn’t have to feel like a criminal to provide the best known options for my child, even if our beloved government doesn’t endorse them. The doctors who are credentialed by our government are endorsing. That is good enough for me. Every parent should do their own real homework and consult with a lot of other people to get many perspectives so they can make an educated decision. After all, I’m the one who answers to my maker as to whether I did what my child needed, not whether or not I followed the rules.

  13. Neil says:

    The gloom and doom about autism is sad to me. Check out the Son-Rise program to see real changes for both our kiddos and ourselves that can lead to recovery from autism. Sure we can love our kiddos just how they are, but Son-Rise helps us as autism parents strive for what we want (recovery) while loving our child with autism and learning to love ourselves in the process. It has saved my life.

  14. RE says:

    Why would probiotics be bad? Because it’s not toxic perscription drugs which the FDA approves. And maybe because it works. Can’t have any natural cures or the drug companies won’t get their profits.

  15. mikelooch says:

    While discussing therapies that do not cure Autism and may not help as much as they cause harm, I would add Risperdal and all the other psychoactive drugs that are thrown at children to “solve” their problems. Wake up America! Drugs are not the answer. I suggest that everyone who visits this site watch “American Addict” which is a documentary about America’s over-reliance on prescription medications. You can find it on Netflix.

  16. Autism Doc says:

    I follow many kids on the spectrum and many of them improve using standard therapies, education and behavioral interventions. They get better with increased speech, decreasing behaviors and improved flexibility. The fact that your child improved, is very good news but it doesn’t prove that hyperbaric oxygen, diet, chelation or anything else had anything to do with it. This is why medical treatments are tested in two groups comparing one treatment to another. Whatever problem your treating, some people will just naturally improve. The question in scientific studies is not “does someone get better” but “do more people get better with one treatment than another?” Testimonals don’t prove anything, your child would likely have improved anyway.

    And yes, concentrated oxygen can be dangerous. Water is fairly safe stuff but submerge yourself in it and bad things can happen. There is also the issue of people taking advantage of families to make a buck. That’s just wrong even if what they do is harmless.

  17. Cathy says:

    I don’t think a lot of people pay any attention to what the FDA says anymore or at least I don’t. They are in place to promote prescription drugs and other medical treatments for which they are lobbied to push. Simply read the possible side effects on the drugs they consider “safe”………………..

  18. Fbc says:

    Most people here have asked where’s the proof? Where’s the evidence that one treatment can’t make some difference in some people while it has no effect or possibly a detrimental effect on others? If a treatment has a bad effect on one out of five while having a good effect on one out of five should it be made illegal?
    This is just one of the reasons I oppose the ratification by the US of the UN’s CRPD treaty. That treaty will give big brother total control over all treatments available for any disabled individual, adult or child. It will also add more legalese language to our already largely ignored laws. The civil rights laws of the 70’s as well as the Americans with Disabilities Act of the 90’s has been sidestepped by even our govt. The blind and low vision people of our nation still have no accessible means to tell a 1 dollar bill from a 5 or any other bills without carrying special technology that not all can afford.
    Show me proof that these studies are fully scientific and fully inclusive.

  19. Generation Rescue says:

    @Shaun Hasley: Were you at all curious about what “significant health risks” the FDA was talking about? Don’t you think it’s ridiculous to say that probiotics are dangerous? And clay baths? One of their false claims about MMS is referring to it as “bleach” but they ignore the extreme dilution that is used. They point to one death due to IV chelation (done incorrectly), but fail to mention that transdermal chelation is also available, and carrys no risk. And, the biggest lie is that these treatments are not helpful. There’s plenty of evidence that parents are seeing remarkable results in their children.

  20. Dawn says:

    While I appreciate efforts to require accuracy in claims made on any product, treatment or service anywhere in our country, I must point out they are not necessarily accurate in stating that there is no cure for autism. It would be accurate to state that there is no known cure at this time. I believe they will figure out ways to improve symptoms tremendously and may find a way to prevent or cure autism in the future, but it will take a lot of brave and innovative thinkers along with people willing to try ideas til we figure it out. No treatment for anything is safe and effective for everyone. Some people are allergic to the sun, some are unable to breathe the air that most of us can. I can’t drink tap water without experiencing tremendous muscle pain. It makes no sense to me, but I don’t have a problem drinking purified water. The government says my water is safe to drink, but my son calls it poison. We need to be careful about claims we make, but we also need to be careful about limiting the potential of finding a cure for many medical difficulties.

  21. Viviam says:

    Both my daughters are autistic. My now 7 year old was diagnosed at the age of 2, and my 4 year old at a little over a year old. I did the early intervention therapies, speech therapy, OT, and ABA. What made a big difference was when we added Hyperbaric Oxygen treatments. My non verbal child came of the chamber saying “Wow”. Since then, they have had over 90 hours in the chamber, and they have come such a long way. I don’t care if you believe that these treatments helped or didn’t help my children. I am telling you it did, and I can assure you no harm came to them. Their hearing is perfect, and so is their health!!!! I highly recommend the treatment. It is worth a try!!! I am not waiting on the FDA to approve the treatments that DAN doctors highly recommend and bring results! If I wait on the FDA, my children might be in their 80’s before they approve treatments.

  22. Yarndiva says:

    You cannot cure a neurological difference.

    Acceptance, and Understanding.

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