Are Alternative Treatments for Autism Always Risky?

Hi Lisa –

One component of this argument that never seems to get discussed openly is the inverse; namely, how do we quantify the risk associated with having a child grow up severely affected by autism? It is only by taking this into account, a question that is answered differently by any parent, that we can contextualize the decisions parents make for their child.

- pD

pD – not sure I understand what you mean by “how do we quantify the risk associated with having a child grow up severely affected by autism?”

Do you mean “what is the risk of having a child with autism?” or “what is the likelihood that a child with autism will grow up and still be autistic?” Or “is being an adult with autism fraught with related risks such as the risk of abuse or accident?”

I think we have at least some notion of the likelihood of a child being diagnosed with autism (in general about 1:100ish). And the likelihood that a child with autism will still be autistic as an adult is very high indeed.

Some kids with autism will develop significant new skills such that their autism is relatively mild. Others will be profoundly autistic as adults. But there’s no good way to be sure what treatments will work, or which kids will benefit the most from what…

And of course anyone with a disability is at greater risk of all kinds of problems ranging from accidents to abuse.

Lisa

“But there’s no good way to be sure what treatments will work, or which kids will benefit the most from what.”

What’s wrong with double-blind, placebo controlled studies? That’s how he know secretin is ineffective for the treament of autism. The latest DBPC HBOT study showed that treatment is ineffective as well.

There’s an intangible cost of treating kids like lab rats that you didn’t address: the psychological toll some parents inflict when they tell their children they are mercury poisoned, or vaccine injured, and need to get better. How are these kids supposed to feel when they don’t “recover”?

There have been both promising and negative research studies done on HBOT (though you may not feel that Rossignol’s work is to be trusted?).

But setting that aside, at present the medical establishment doesn’t discern among different types of autism in such a way that studies can tell us who will benefit most from what. What’s more, we don’t have many longitudinal studies to give us insight into long-term impacts of different approaches.

While double blind placebo research may be a gold standard, we are nowhere near being able to do such studies to compare, for example, the impact of Floortime versus the impact of ABA for a particular cohort of children over the course of several years. Not only would the cost be prohibitive, but selecting the cohort would be very difficult (you want similar symptoms and functional level and ages and home/educational environments) – and families may also add additional therapies such as speech, OT, etc. which add to the confusion.

Then there’s the question of which outcomes are desirable. The child being treated with ABA may have more appropriate behaviors while the child being treated with floortime may be more interactive and engaged. Which was more successful? It depends in part on your personal philosophy of what success should look like.

As to the psychological issues, how do you think about the psychological impact of placing a two-year-old in 40 hours a week of discrete trials? I’m guessing that that’s also pretty rough on the psyche!

Lisa

There have been both promising and negative research studies done on HBOT (though you may not feel that Rossignol’s work is to be trusted?).

The latest study was partly carried out in Dr. J. Bradstreet’s Florida clinic. Bradstreet was one of the authors. It found no support for the use of HBOT as an effective treatment for autism.

Rossignol’s HBOT study from last spring has never been replicated.

MY NEPHEW WHO IS NOW 30 YRS OLD AND NON VERBAL ATTENDED GIANT STEPS SCHOOL FROM THE AGE OF 9
UNTIL APPROX. 15 YRS. HE WAS ALWAYS A HAPPY SMILING
CHILD AND PHYSICALLY HANDSOME & STRONG. HE WAS DOING WELL READING & WRITING & LOVED ALL OUTDOOR ACTIVITIES SKATING-BIKING-SWIMMING ETC.BUT ALL THIS STOPPED WHEN HIS DAD MY BROTHER HAD TO HAVE HIP & KNEE SURGERY & NEEDED EXTENSIVE RECUPERATIVE THERAPY- THAT NECESSITATED LOOKING FOR AID WITH THE SOCIAL SERVICES-THEY LIVE ON THE SOUTH SHORE OF MONTREAL-THIS WAS THE END OF HAROLD’S HAPPY DAYS & THE FAMILIES AS WELL! ! HAROLD’S PARENTS WERE SOON TO SEE HAROLD REGRESS BECAUSE OF BEING ADMINISTERED SSRI’S ETC. WHICH CAUSE AWFUL
SIDE AFFECTS FOR HAROLD >SIB & AGRESSION !! HIS PARENTS PLEADED FOR THEM TO DISCONTINUE THE USE
OF THESE DRUGS THAT SO HORRIBLY GET IN HAROLD’S WAY OF FUNCTIONING> AS HAROLD SHOWED MORE SIGNS OF SIB & AGRESSION THEY WOULD UP THE DOSAGE & OR CHANGE FOR ANOTHER DRUG !! WHICH IN TURN MAKE HIM CONSTIPATED & THEN THEY ADMINISTER LAXATIVES & ENEMAS TO THIS DAY!! BECAUSE OF HAROLD’S PARENTS CONTINUEING COMPLAINTS THEY HAD A SO CALLED PSYCHIATRIST STATE THAT HAROLD’S PARENTS WERE INTERFERING WITH HIS TREATMENT & HAD A COURT ORDER TAKEN OUT AGAINST THE PARENTS TO PUT HAROLD UNDER THE QUEBEC CURATORSHIP’S CARE!!
THE COMPLAINT WAS THAT THE PARENTS COULD NOT TAKE CARE OF HAROLD!!!THE COURT JUDGEMENT WAS TO
HAVE THE CURATOR TAKE OVER HAROLDS LIFE FOR A ( 1 )
-( 2 ) YEAR PERIOD TO SHOW THAT THEY COULD IMPROVE HAROLDS LIFE AS COMPARED TO THE PARENTS !! HAROLD’S LIFE UNDER THEIR SO CALLED CARE HAS BEEN AN ABSOLUTE HELL > THIS YOUNG MAN WHO HAD SO MUCH TO OFFER HAS BEEN LOCKED IN A ROOM OVER MEDICATED AND NOT ALLOWED OUT OF HIS ROOM!! THEY HAVE KEPT THE BLINDS CLOSED AND DRAWN FOR YEARS AND HE DOES NOT KNOW IF IT IS DAY OR NIGHT > SUMMER.> SPRING>WINTER OR FALL FOR OVER ( 8 ) YEARS!! I ASKED THEM WHAT THEY KNEW OF CARE FOR
AUTISTIC INDIVIDUALS > NOTHING!!! THESE ARE PEOPLE WHO ARE PARTICIPATING IN HAROLD’S DAILY LIFE IN AN INSTITUTION THAT HAROLD SHOULD NOT BE IN > HE SHOULD BE IN HIS HOME WHERE HE BELONGS WITH FAMILY THAT LOVE HIM !! THE CURATOR STATED THAT THEY WILL SEE HOW HE DOES IN THE NEXT YEAR!!! & REVIEW AT THAT TIME WITH HIS PARENTS!!! UNBELEIVABLE HELL !!! PLEASE GIVE ME YOUR FEEDBACK
& SUGGESTIONS ON THIS HELL THAT THE SYSTEM HAS LOCKED HAROLD & HIS FAMILY INTO***

The caps lock isn’t helping your case.

I’m guessing everyone believes they are doing the right thing, I would love to see early ivig therapy with addition of perhaps aspirin trialed, perhaps in those monkeys they vaccinated last year. I believe the omega 3,vitamin d3, as well as b12 should be given to all. There is evidence that autism IS inflammation of the brain, and it needs to be addressed. As far as occupational therapy, speech,etc, that’s all fine, but psyche drugs…are only masking and perhaps causing harm, jmo. I’d have a hard time believing that hour upon hour of structured activity would do anything but give an almost sadistic flavor for auditing by those in charge. Let them do trials with those autistic again with those monkeys , and leave the children alone . I have high hopes, my nephew is doing remarkably well, and he was so profoundly autistic. He has gone from being non verbal,flapping, growling, rocking, screaming, roaming, to happily mall shopping and going to a work study at the community college. I have high hopes, yep.

Every chelation death was a mistake of giving the wrong drug or dose.

Yes–but not for the reasons you imply. Chelation is the wrong therapy for autuism. ANY chelator is the wrong drug unless real heavy metal intoxication is proven using a real test.

Unfortunately, parents are given false information. First, that autism is mercury poisoning. Second, that chelation challenge testing or urinary porphyrin testing is useful for showing heavy metal poisoning.

Both are incorrect.

There is evidence that autism IS inflammation of the brain, and it needs to be addressed.

as the news stories clearly points out–there isn’t enough evidence to say that it needs to be addressed. Also, the types of inflammation observed are NOT affected by many of the treatments applied.

One component of this argument that never seems to get discussed openly is the inverse; namely, how do we quantify the risk associated with having a child grow up severely affected by autism? It is only by taking this into account, a question that is answered differently by any parent, that we can contextualize the decisions parents make for their child.

This is a good question–but it is irrelevant to whether it is appropriate to use untested therapies, or therapies that are based on misinterpretations of the science.

Can one of these doctors guarantee me that my child won’t be more “severely affected” after the treatment? They can’t because they haven’t done the studies.

Heather, what a sad sad story!!! I’m sorry, I don’t have any advice to give other than to find a good attorney. Thank you for sharing, and very best wishes to your family for a better future.

Lisa, thank you for saying that “there’s more to the story than would meet the eye of the casual reader,” and that “They feel that all they’ve received from the medical community is a diagnosis and a handshake. The next steps, from researching and selecting treatments to funding those treatments, are up to the parents,” and that ” Bottom line: alternative treatments for autism run the gamut from high to no risk, and from useful to dangerous. Meanwhile, those mainstream treatments that are available do the same. To avoid the likelihood of parents saying ‘yes’ to expensive, dangerous options, the medical community will need to offer more – not only in terms of diagnoses, but also in terms of treatment recommendations, resources, and ongoing support.”

“As to the psychological issues, how do you think about the psychological impact of placing a two-year-old in 40 hours a week of discrete trials? I’m guessing that that’s also pretty rough on the psyche!”

Lisa, what, other than your ideological opposition to ABA do you base that question on? My son did not receive ABA at age 2 even though he was diagnosed by that age but he did receive some afterwards and has over the years since then. Discrete trial training has not had ANY negative impact on his psyche and there are no studies showing such an impact. Personally I am sick and tired of such ill informed smearing of the most evidence supported intervention for autistic children.

You write about the dangers of alternative treatments and then, with no foundation whatsoever, you irresponsibly smear an intervention which has been supported for years by hundreds of studies and has been described as the most proven treatment by the US Surgeon General, state agencies in New York, California and Maine and in 2007 by the American Academy of Pediatrics which clearly pointed to it as the most proven effective intervention for autistic children:

“The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders”

Please provide reference to a credible study which shows that early ABA, whether provided by Discrete Trial Training or otherwise, damages the psyche of autistic children.

If you can not do so then I ask that you refrain from further irresponsible references to ABA as an intervention for autistic children.

If you can not either than I ask you to consider what role you play, as host of this web site, in creating the impression that all autism interventions, alternative or not, are created equal.

Harold, my reasons for saying this about discrete trials therapy (which is NOT representative of today’s ABA for the most part, by the way) is based in developmental research such as that used to develop the recently publicized Denver Method.

While straight discrete trials ABA may be very effective in changing behaviors or building skills, it is also an approach which directly contradicts what we know about the emotional and social development of young children.

What troubles me about your presentation of ABA is that you seem not to distinguish between the various forms and uses of behavioral therapies. Many of the top ABA researchers today do NOT use discrete trials most of the time, but work in a naturalistic setting for precisely those reasons.

In short, thank goodness, ABA is changing and growing to meet the broader needs of the children for whom it is intended.

Lisa

Folks, I have “unapproved” two posts in this thread because they are direct attacks against individuals. While everyone is welcome to express opinions and debate issues, I can’t allow personal accusations.

Lisa

Good post. A couple of points.

The (Chicago) Tribune Company owns the LA Times. This is an example of management stretching content by using an annotated version of the long article in the Tribune to fill space in the LA Times. The article doesn’t build on the original piece. It excerpts it. What I found most interesting is that many of the most objectionable parts of the original, sloppy piece (like throwing Dr. Herbert under the bus) were edited out.

Second, pharmacological management of autism’s sometimes debilitating behavioral manifestations doesn’t exclusively consist of prescribing anti-psychotics or SSRI’s. Any reputable pediatric neurologist can offer a number of different options tailored to the individual patient’s needs, all of which should be undertaken in conjunction with therapies like ABA (which insurers and the American Academy of Pediatrics still don’t define as medically necessary).

Also, all medications have potentially dangerous side effects if prescribed or used improperly.

Regarding Pd’s comment #1, this is a good point. If someone goes through surgery to correct a defect to the heart, there are risks to the surgery, but those risks are weighed in relation to the risks of not doing the surgery.

Lisa, you mentioned some of the primary risks of autism: “And of course anyone with a disability is at greater risk of all kinds of problems ranging from accidents to abuse.” For example, one often reads of accidents in the newspaper such as children with autism wandering off and drowning. And people with autism who are unable to live independently, care for themselves, and speak well enough to testify against an abuser are at higher risk of exploitation.

In addition, many people with autism have serious medical issues such as gastrointestinal disorders, allergies, and seizures. If effective treatments are not found, these can have very debilitating effects, destroying the quality of life or even life itself.

So it is amazing to me that children who have recovered from autism are not cause for intense interest and study, as well as celebration, rather than their stories simply being discounted as “would have happened anyway” or “parent imagined it” with no investigation.

Many biomedical treatments for autism, as Lisa mentioned, are actually quite low risk and even relatively low cost, such as dietary intervention, vitamins, digestive enzymes, and probiotics.

Chelation (and I’m speaking just as a layperson mom who reads) has some risk, but my understanding is that these risks can be monitored by a competent experienced doctor via periodic lab tests to test for liver function and for levels of iron and zinc. Getting back closer to Pd’s point, what are the risks of leaving mercury toxicity untreated?

There is so much more research needed on these treatments and on the very diverse people with autism.

To expand on Dadvocate’s interesting comment —

The Chicago Tribune artlicle only briefly quoted prominent researcher Dr. Marth Herbert of Harvard University, saying that she had threatened to sue if the reporters Trine Tsouderos and Patricia Callahan said that she was defending chelation.

According to Terri Arranga, Dr. Martha Herbert wrote the following to the Tribune:

“I did a rather long interview with the Tribune to explain my thoughts on chelation and additional approaches to solving the health issues connected to autism. The only consequence of my interview is that you use a solitary quote to make me sound contentious and defensive. Is there a reason you chose not to use something I said that would actually illuminate the discussion surrounding chelation and other medical treatments for medical compromises that may exist in these children?

“So let me clarify one more time: my position on chelation is a consequence of science. There is no doubt that it serves to reduce the body burden of heavy metals. But although there are numerous anecdotal reports, we have no sound science yet to assess whether, how or in what ways the reduction of those metals leads to an improvement of children with Autism Spectrum Disorders. I support such research. Secondarily, like all forms of treatment, chelation can be mishandled by practitioners; it carries some intrinsic risk for which there are protective measures that can be taken (and that need to be studied); mishandling this treatment can create extra risk. I support research to determine if there are optimal chelation strategies that minimize risk and maximize any potential benefit. There is risk for many procedures and medications in medicine, and this is balanced against benefit and need.

“It is also the case that physicians use treatments based on judgment in cases of serious need. That is commonplace. Obviously there are good and bad doctors but it is not only bad doctors who do whatever they can to help patients in need. Good doctors are often good precisely because they do that skillfully.

“There are always good doctors, bad doctors, successes, failures and mistakes. That is not a news story. The CENTRAL conclusion to be drawn from observing parents searching far and wide for treatments for their ASD children—and reporting successes as well as failures and catastrophes—is that much more attention must be focused by mainstream medicine and federal and private funding on the medical crisis faced by so many of these children.

“IN CONCLUSION: My statements regarding chelation will always be measured and circumspect until we have additional science. I bent over backwards to give that context, worked hard to be kind and informative, sent abundant materials to reinforce what I said, explained my role in articulating physiological issues in autism, and offered to be available for background on autism going forward. You do nothing to elevate the discourse by using a quote from me making me sound litigious and angry without the context of my other comments.”

http://www.ageofautism.com/2009/11/cherry-picking-science-chicago-tribunes-shotgun-journalism-strikes-with-another-shoddy-hit-piece.html

Twyla, I guess I’d make two comments:

One: chelation makes perfect sense if you have a child with heavy metal poisoning. But I think the point made in the article is that parents are using chelation techniques on their own or with very limited medical support, with the HOPE that it’s mercury poisoning that caused the autism and thus chelation that will cure it. I’ve seen far too many ads out there for DIY chelation kits: very scary stuff.

Two: If we could say “treat your child with X and he will recover,” we wouldn’t have any controversy at all. But we can’t. And so wind up SUGGESTING that various alternative (or mainstream) treatments will “recover” most kids when the evidence doesn’t support this.

Then we set up a straw dichotomy: treat your toddler now and recover him, or doom him to a life of autism. But it doesn’t work that way. Some kids receive minimal treatment and “recover” anyway; others receive intensive treatment and continue to have significant symptoms.

It really gets under my skin when the suggestion is made that “if only we provided all kids with autism with XYZ treatment now we wouldn’t have to pay for group homes and subsidized employment in the future.”

The pay now or pay later scenario just doesn’t work for autism (at least at this point in history!).

Lisa

Chelation … has some risk, but … these risks can be monitored by a competent experienced doctor via periodic lab tests to test for liver function and for levels of iron and zinc.

How do we square this comment with Dr. Herbert’s statement that “we have no sound science yet to assess whether, how or in what ways the (chelation)leads to an improvement of children with Autism Spectrum Disorders.”

Yes, chelation works for mercury poisoning, but that doesn’t mean that autism is a misdiagnosis for mercury poisoning, which is a major tenet of faith in the anti-vaccine movement.

Lisa you provided no study or any other basis to substantiate the idea that Discrete Trial Training causes harm to a child’s psyche. Please do so.

The recent Denver study is further proof that early ABA intervention is an effective intervention for young autistic children. The control groups involved did not use DTT style ABA so it does not prove that ABA, with the relationship style Denver approach, is more effective or less effective than DTT ABA. NOR does the recent Denver study substantiate a claim that DTT style ABA is harmful to a child’s psyche.

My son has received several years of DTT style ABA and has benefited greatly learning a number of skills. His personality has not been harmed in the least . I have previously posted links to photo sets on my site, which you have visited and seen, which show a happy, smiling boy in a variety of settings. I have posted pics of him waiting anxiously for a DTT based ABA therapist to arrive at home.

Here are some more recent picture links of my son. Tell me if you think his psyche has been damaged:

The Joy of Conor, May – August 2009

http://tinyurl.com/yew2b42

The Joy of Conor, January – April 2009

http://tinyurl.com/ybx2jde

November 29, Unbelievable Weather! Conor and Dad Take Advantage

http://tinyurl.com/y9jans2

Conor Returns to the Circle Place

http://tinyurl.com/yb2fjmm

The Denver program MAY prove to be better for younger autistic children, for some purposes, or it may not, then DTT but that remains to be seen. In the mean time there is no basis for claiming that DTT hurts a child’s psyche.

None at all. And you know it.

With few exceptions, people who exhibit autistic behavior have discrete, measurable physical differences in the gross structure of the brain, caused by genetics or fetal trauma. We would never expect a medicine which could cure a hare lip or spina bifida, yet naïfs expect a cure for brains with profound physical differences. It’s silliness.
For the few exceptions where it is a missing protein or similar effect of a genetic defect, you could do an analysis of virtually every protein in the blood and urine and if you could spot a deficiency, it would be a lucky break, but let’s face it, there aren’t many “Lorenzo’s Oil” miracles out there. Trying some alternative medicine without a specific connection between an assayed deficiency and the proposed medicine is such a long shot as to be not rational, something only someone who is desperate would try (and of course they do), but every strong medicine comes with a warning on the label not to give it to someone it is not prescribed for, and we ignore that warning at our peril.

Sullivan quote:as the news stories clearly points out–there isn’t enough evidence to say that it needs to be addressed. Also, the types of inflammation observed are NOT affected by many of the treatments applied

I’m not sure why any inflammation would NOT need to be addressed? It’s been a bit over twenty years since Kawasaki was determined to be treatable, with anti-inflammatories, with life saving success.In the last fifteen years fighting the inflammation has become a mainstay of asthma treatment, ignored for many years. Since we have asthma, kawasaki, and autism in our family, I can’t help but consider a possible connection. I do consider a common mechanism behind all three, possibly vaccine , an autoimmune response to an ingredient, with the consequence inflammation. Since the introduction of Penicillin and the reduction of rheumatic fever, Kawasaki now stands as the leading cause of aquired heart disease in children, is it not interesting that since the reduction of polio Guillain Barre is the leading cause of paralysis in children? Now we have this explosion of autism, will autism be the leading cause of childhood dissability? We do KNOW that gb can be caused by vaccines, we do know that vaccines are suspect in the development of KS ,asthma and autism, We do know that all seem to be based in inflammation. Why are we treating the inflammation in asthma, kawasaki, gb, and not autism?

Now we have this explosion of autism, will autism be the leading cause of childhood dissability?

What “explosion of autism”?

Do you have any references to support the claim that Guillain Barre is the leading cause of paralysis in children?

GB was associated with the swine flu vaccine 33 years ago, and there have been no confirmed cases linking GB to flu vaccine since. It’s still unknown what caused the 1976 GB cases. The best hypothesis was raised by FDA scientists, who said that the eggs used in 1976 (when vaccine regulation was less stringent) may have been contaminated with campylobacter (the most common known cause of GBS). Evidence for the claim include detection of campylobacter genome by PCR in stored specimens.

GBS is rare, occurring at roughly 1:100,000. In 1986, it occurred at a slightly higher rate among those who had been vaccinated for flu – about 1:80,000. The higher rate could have been real, or it could have been a statistical outlier. We may never know.

“I’m not sure why any inflammation would NOT need to be addressed?”

Check out the FAQ and Hopkins.

http://www.neuro.jhmi.edu/neuroimmunopath/autism_faqs.htm

Inflammation is a response. What if whatever the inflammation is responding to is worse than the inflammation?

Here’s an analogy: you have a mild fever. You take medicine to reduce the fever. Unfortunately for you, the fever was keeping an infection from spreading. The fever was the response. The infection was the root problem that needed addressing. By eliminating the response, you made the actual problem worse.

Chelation (and I’m speaking just as a layperson mom who reads) has some risk, but my understanding is that these risks can be monitored by a competent experienced doctor

Which is why if I were ever to need chelation, I would use a medical toxicologist–someone trained and very experienced in treating poisoning.

I would not work with a general practitioner who decided to add chelation to his/her treatments.

I like to use the best, most trained people for myself and my family. DAN doctors just don’t fit that category when it comes to a specialty field like toxicology (or immunology, or the myriad of treatment specialties that DAN type doctors practice).

I understand that would be with inflammation of any kind, what if? Of course inflammation is a response, however, we have children that are being damaged, and for the most part we have models that indicate inflammation of the brain is never a good thing, so let’s just stop it. The same is true for Guillain Barre, yet no one suggests we allow damaging inflammation to continue. The fact imo is this, because it’s always been easy to suggest brain involvement is fixable by “teaching in the right style, by fixing the family, by behaviorally adjusting” we remain on the wrong path.

“While straight discrete trials ABA may be very effective in changing behaviors or building skills, it is also an approach which directly contradicts what we know about the emotional and social development of young children.

What troubles me about your presentation of ABA is that you seem not to distinguish between the various forms and uses of behavioral therapies. Many of the top ABA researchers today do NOT use discrete trials most of the time, but work in a naturalistic setting for precisely those reasons”

Lisa

Once again you make negative statements about DTT without providing any reference to back them up. ABA, whether provided by way of DTT or not, is practiced in many settings. My son receives DTT ABA in a separate room at our request. He also learns in common areas such as the school library, gym, pool, kitchen etc.

You made unsubstantiated comments about DTT damaging the psyche of children like my son without anything to back them up and now you reference ABA taking place in naturalistic settings. The only thing behind your comments is the ND ideology to which you have always clearly been a subscriber.

Again provde some references to some credible sources (not Michelle Dawson, Amanda Baggs etc) to substantiate your anti DTT commentary. And look at my son’s many pictures of his happy, playful personality and tell me with a straight face his psyche has been damaged.

I speak from actual knowledge of ABA, DTT and otherwise. And I can assure you I am as well read in tis area as you are. And much more directly experienced than you.

Unfortunately, despite your habitual courtesy you have not made your anti DTT case.

Not at all.

Harold – I think you’re taking my statement as a declaration of war. In fact, it was a comment based on my understanding of (a) child development research and (b) contemporary ABA.

Typically, intensive discrete trials is offered to young children with profound developmental delays. Its purpose is to build appropriate skills and behaviors, and in general it’s quite successful in achieving that goal.

Clearly, children to whom DT is offered are not developing normally to begin with. There’s no good way to measure whether they WOULD have have developed more typical social communications skills with a more developmentally appropriate combination of therapies.

In addition, so far as I know, no one has compared traditional DT to, say, Floortime or RDI, and looked at the outcomes relative specifically to emotional/social development. If they have, I would LOVE to see the outcomes.

My guess, however, (yes, GUESS) is that a therapeutic approach like the Denver Method, which combines developmental and behavioral interventions, would be more successful in providing kids with a positive human experience while also building skills and appropriate behaviors.

In fact, many contemporary ABA therapists are working on both levels at once, and doing very little with traditional DT. In an interview with Jim Partington, an ABA pro, he said something to the effect that “if my warm smile and approval aren’t enough of a reinforcer to reward the child for a job well done, then I’m not doing my job!”

To me, that’s the ideal combination of behavioral and developmental. It’s rare, though… and that’s a shame.

Lisa

. Is the elevation of MCP-1 unique to autism?
No. Our observations resemble findings in other neurological disorders in which elevation of MCP-1 is associated with the pathogenesis of neuroinflammation and neuronal injury. These diseases include HIV dementia, ALS, stroke and multiple sclerosis. It remains unclear whether MCP-1 plays multiple roles in the CNS or whether its presence is only associated with inflammatory conditions.
Thanks Sullivan I find this interesting..

What do we know about the diseases that share this kind of inflammation? Surely these scientists could learn from taking a look?
We know that MS patients have a defective blood brain barrier. Haven’t we heard this in relationship to autism as well?
What happens in MS, metals and chemicals cross over and leak into the brain..that shouldn’t happen. Are infants barriers developed before we start their immunization schedule? I don’t believe so.
I read this..
“Interferon beta-1a is known to lower the levels of inflammatory cytokines in the blood of patients with MS. When the body is in a state without inflammation, as it is normally, its cells, including neurons, can better regulate their contents and byproducts, including iron. In untreated MS, which is characterized by brain inflammation, iron may be allowed to build up to toxic levels in certain brain structures, causing toxic chemical reactions and death of nerve cells, leading to what we see as brain atrophy on MRI scans.
I’m not suggesting that MS , ALS, HIV, are the same, however, that Hopkins study suggested the “same” kinds of brain inflammation are found in these as in autism. Perhaps the studies with those diseases could provide some insite into strategies for treating autism. Or we could say all cause psyche symptoms so give them all abilify.

Lisa, I don’t really see how your comment # 18 follows from my comment. I certainly did not say, “treat your child with X and he will recover” nor did I suggest that “various alternative (or mainstream) treatments will ‘recover’ most kids” nor that “if only we provided all kids with autism with XYZ treatment now we wouldn’t have to pay for group homes and subsidized employment in the future”.

I do not have a simplistic view of biomedical treatments. Fact is, the same treatments can help some people with autism but not others. I would have nothing against an article urging people to think for themselves, evaluate treatments and practitioners carefully, realize that money spent could be wasted. But this series went farther than that and basically trashed the whole biomedical movement, lumping together all DAN practitioners as incompetent, treatments as dangerous and ineffective and expensive, and parents as foolish.

I believe that all of these treatments deserve a lot more attention and research, and are already helping some people with autism greatly. This is not the same as saying, “treat your child with X and he will recover”.

I said that my understanding is that the risks of chelation are less when closely monitored by a competent experienced doctor with periodic lab tests. ANB, this is consistent with Dr. Herbert’s statement that “it carries some intrinsic risk for which there are protective measures that can be taken”.

The fact is, some kids with autism improve dramatically with chelation; some even recover from autism. As Dr. Herbert said, these are “numerous anecdotal reports” and not backed up by formal studies.

The article went beyond saying that parents are using chelation techniques on their own or with very limited medical support — certainly that would increase the risks of chelation. The article went much farther than that, saying that chelation “is based on a faulty premise” and “Chelation’s popularity as a treatment for autism is driven by the unproved idea that the disorder is tied to accumulation of heavy metals in the body.” There is actually considerable evidence that mercury can cause autism.

Lisa, I don’t understand why you said, “The pay now or pay later scenario just doesn’t work for autism (at least at this point in history!).”

Certainly there is no sure definite course of treatment for a particular child, but if there were not value in looking for effective treatments, why would you be working so hard on behalf of your son? Why not just place him in any old school and pursue a career and/or whatever interests you may have?

Maybe you are differentiating between biomedical treatments and education, but it seems to me that you invest a huge amount of effort in your son, and if you don’t believe it will help his future be better than it would have been, why make that investment?

Likewise, if a parent finds that his/her child functions much better on a certain diet, or with certain vitamins, or even with chelation, certainly it makes sense to “pay now” so that the future can be better for that child.

Which isn’t to say that there is any simple formula to determine what should be done now, and it certainly doesn’t mean that the same thing is good for everyone with autism.

The fact is, some kids with autism improve dramatically with chelation; some even recover from autism.

This is far from a fact. The most we can say with certainty is that some kids with autism improve after chelation. But the same can probably said of church exorcism, or swim lessons, or Dr. Feelgood’s Ionic Foot Massage.

I’ve heard so many definitions of “recovery” that I have to ask – what is yours?

Twyla – sorry, didn’t mean to suggest that you were saying all those things I was venting about in #18… I went way beyond your points because I just got on a roll!

Re my son ( or anyone else’s) – here’s my perspective. Virtually every kid will grow, develop and improve skills over time – and with help, some grow, develop and improve remarkably. Of course it makes sense to teach, support and treat your child!

BUT. There’s no way to know whether my kid or anyone else’s will improve to the point where he/she can function independently or not be a “drain on the system.”

In other words, a child can go from being non-verbal, unengaged and incontinent to being verbal, warm and capable of some degree of self care. But that doesn’t always translate to “and thus will be able to get and hold down a job, manage a household and avoid the need for social security benefits or other costly supports.”

In addition, there’s no good yardstick for measuring which kids will improve to what degree with which kind or how much therapy.

Kid A may do beautifully on 10 hours a week of floortime plus an hour each of speech and OT.

Another may do well with 40+ hours of ABA.

A third may get the full 40+ hours and still not develop much in the way of verbal or social skills.

It’s really a crapshoot to a large degree.

Lisa

Does anyone remember Carol North’s book, “Welcome Silence”? It was probably 1990ish,when I picked it up ,it was a just a nice read, a powerful story of recovery and hope. She validated for me the belief that the brain is often sick, can be healed, and can be treated. We treat every other organ agressively to bring about healing.If the heart is in a state of inflammation , or lungs, liver, gut, even skin, you can bet no one would assume the inflammation was serving a purpose, they would stop it! The Hopkin’s study that suggests the inflammation “may be beneficial” is falling back on a study done in ALS patients. This hasn’t stopped them from continuing to discover methods to stop the inflammation at a level and allowing it to continue at another. No one is suggesting behavioral treatments in MS, ALS,or HIV brain inflammation, are workable solutions.

ANB, you seem to think that “facts” are limited to things demonstrated in peer reviewed scientific studies published in journals. Open any history book and you will find numerous facts, some more in dispute than others, most of which have not ever been verified by scientific studies. And the “facts” proven in scientific studies are often contradicted by “facts” proven in other scientific studies. I’m all in favor of research and science, but I’m not willing to hand over all control of reality to scientists. We all have brains and experiences and we observe, read, think, and learn for ourselves.

Then there is the “coincidence” argument which says that all improvements from biomedical treatments are a coincidence, just as all descent into autism after vaccine reactions is just a coincidence. A whole lot of coincidences!

Based on all that I have read, parents whom I know, parents I have heard speak at conferences with before-and-after videos and medical records and school reports displayed, as well as the ARI survey showing that about 75% of parents reported that their kids improved with chelation — much higher than with other treatments surveyed — I consider it to be a fact that some kids improve dramatically with chelation and some even recover from autism.

I also know parents of kids who did not do well with chelation. I am not saying that it benefits everyone. I am also not saying that it has no risks. There is so much more that needs to be learned about autism treatments.

A small study on chelation was recently completed:
http://www.breakthroughdigest.com/autism/chelation-therapy-drug-found-safe-and-beneficial-for-children-with-autism/

As far as what is my definition of “recovery”, I’ll give you Webster’s definition: “the act, process, or an instance of recovering”. There, are you happy now, ANB?

OK, here is Webster’s definition of “recover”: “1. to get back, regain; 2. to bring back to normal position or condition, rescue”

Now we could argue forever about what is “normal”.

Basically, recovery means losing the diagnosis of autism. I have seen parents speak who have a report diagnosing their child with autism and a subsequent report saying that the child no longer has the diagnosis of autism. I have seen these parents show proof that their formerly nonverbal child now converses, smiles, participates in a regular classroom without support, and even gets good grades.

Recovery means sufficient development of language, and the ability to socialize, and lessening of repetitive behaviors/stimming, to lose the autism diagnosis.

We could argue about whether a child who changes from non-verbal autism with no ability to participate meaningfully in a regular classroom to Aspberger’s syndrome with the ability to participate in a regular classroom has recovered? We could endlessly split hairs over labels, but I don’t have time or inclination for that at the moment.

Lisa, thank you for the clarification.

Barbaraj, thanks for the interesting comments about inflammation.

Is there any reason natural chelation couldn’t be tried? Perhaps giving sulphur rich foods?
I’ve been reading tonight about the lasting effects of the contaminated polio vaccine on subsequent generations, showing up in the brain tumors of grandchildren. Polio was a nasty illness, however, the cure seems to have extended it’s killing power into three generations. Somehow I don’t think it’s understood how much more damage was created by that shot, than would have occured with polio itself. Replacing with lung, bone, brain, lymphoma cancers, doesn’t seem a win. I was reading this as I was following the path of retro viruses in vaccines, giving consideration to the type of inflammation found in the brains of autistic children being similar to that found in retro virus hiv dementia. I have to wonder if there is more to the legacy of simian 40 that isn’t being shared.

Lord…it only took one click..of course it’s causing more morbity than we knew..it may be the vaccine program is the medical holocaust of the times.

http://www.jneurosci.org/cgi/content/abstract/27/11/2969

To barbaraj -

see http://www.ageofautism.com/2009/06/autism-cancer-and-aids.html

Thanks Twyla! I’m not sure why so many don’t follow truth and logic? It’s sickening to believe that the damage from these vaccines far exceeds the damage from all of the “target illnesses” combined, and yet we ,sheep, continue to “believe, and have faith” that everything is being done to protect us. I think some of the blame can go to the “paid for” media that won’t touch the truth, and the hospitals such as Hopkins ,that won’t touch the hand that feeds them”. I’ve seen in my city, Baltimore, what happens to the occasional rogue doctor that believes in real medicine, and the oath ,”first do no harm”. Most know careers can be destroyed if you think out side of the pharm box.
Back to that article, we know that simian 40 originated from the monkeys, there are likely many more jungle diseases in addition to s 40 and hiv that have been injected into the world’s population. Retros are hard to find, especially when told not to look. It’s horrible to imagine, and horrible to accept that this means generations of affected will continue regardless of their own vaccine status, as retro viruses are passed on to offspring. I guess they can safely say, it’s genetic.

I’ve been looking at the risks associated with less than traditional, unaproved types of therapy, and the risks of a few typically used and newly suggested therapies. While,no, I haven’t graphed them, so far it appears we are fearing a risk that is smaller than what many are accepting. When someone says, oh no, my child may get oxygen toxicity from the chamber, that same child may get diabetes from abilify. Diabetes comes chock full of morbidity and mortality, but maybe it doesn’t sound as bad? The child that died from chelation, and two others we didn’t hear about was given disodium edta instead of calcium edta, this was a grave medical error, a sad but small number among the tens of thousands of such errors experience anually in this country. So far I’m finding the risks from suggested therapies are consistantly small in comparison to the risks of mainstream medicine therapies. Suicide among young teens on many of the psyche drugs is a real and under considered danger.

“When someone says, oh no, my child may get oxygen toxicity from the chamber, that same child may get diabetes from abilify.”

But there is no known benefit to HBO, chelation, chemical castration, etc. as treatments for autism, so what’s the point in subjecting a child the risk?

On the other hand, ANB, other “alternative” approaches such as vitamin supplementation (omega oils, vitamins B and D, etc.) carry relatively tiny risks compared with Abilify or Risperdal.

And while I can’t say that “major double-blind placebo research proves without a shadow of a doubt that they are beneficial to children with autism,” I can say that “some studies suggest that vitamin supplementaion may have a positive impact on some children with autism.”

Same goes for a number of treatments such as play therapy, RDI, Floortime, sensory integration therapy… yes, the research has been done, but not at the ideal level. They may or may not be helpful for any individual child.

But it’s almost impossible to injure a child through implementing these “alternative” techniques (assuming you don’t give megadoses of supplements), and meanwhile they just might make a big difference.

Lisa

Not sure what you’re getting at, Lisa. On one hand, some parents are exposing children to risky alternative treatments for which there is no known benefit, but that’s OK because play therapy is safe?

The original Chicago Tribune article was an expose (no need for scare quotes) of the quack practitioners who misrepresent science and put children at risk. It’s not about play therapy, RDI, and ABA.

I am ducking, but am going to say it, vaccines are risky, doctors have changed their stance from, “first do no harm”, to “we don’t want to have the public lose confidence in the immunization program”. Model after model in vaccine/animal studies have shown autistic behavior,autoimmune disease, and yep, death, and yet they are flawed because we can’t use an animal model when determining vaccine damage??? How many babies have died under the cover of sids, how many are disabled each year, and why do we buy the safety assurances? I can name children who have gone deaf after mmr,had itp after mmr, have had Kawasaki after mmr, bells palsy and autism after mmr. I can name children who have died after dpt, and have brain damage or autism after dpt. Do I have an unusually unlucky group of kids around me? Vaccine is the biggest risk we put on our children, IMO. Name calling, such as “quacks” is becoming part of the obvious propaganda protecting the true culprits.

ANB, the Tribune article says, for example: “Most physicians recommend intensive behavioral therapy and, if asked, warn parents away from experimental treatments. Even so, studies have found that up to three-quarters of families with children who have autism try at least some alternative therapies.”

We don’t use chelation, HBOT, castrating drugs, etc. etc. But based on the description above, our use of Floortime or sensory integration therapy could also be termed “alternative” or “experimental.”

I’m not defending inappropriate use of invasive and/or risky biomedical techniques. But I am saying that intensive ABA and/or psychoactive drugs are not the only available useful, risk-free options.

I feel it’s important to make parents aware that there are “alternative” options that are neither ineffective nor risky.

Lisa

Quackery: Deliberate misrepresentation of the ability of a substance or device for the prevention or treatment of disease. We may think that the day of patent medicines is gone but look around you and you will see them still. They appeal to our desire to believe that every disease is curable or at least treatable. Quackery also applies to persons who pretend to be able to diagnose or heal people but are unqualified and incompetent.

Exactly ANB, the use of the word quack suggests unlicensed practitioners, such as the ones that killed a child during a rebirth. When a group of qualified individuals with credentials in their field is finding methods to help a percentage of children who are disabled and are having successes, we should look to them for the future in the care of autism, not call them names. Parents can accept the risks,or not, and make the choices. I’m admittedly, at the end of the line, I will watch and follow as an observer , if it looks like it’s working I will try it. When I think of people misplacing their faith in mainstream care, I think of all of those poor souls who went through electric shock therapy, it wasn’t that very long ago.( and of course my favorite..primal scream therapy) Carol North was on the cutting edge when she accepted kidney dialysis as a cure of schizophrenia..how quacky of her! What was in her system that caused her illness? No one knows, and of course it would work on few, but more likely hasn’t been tried on many.

“Exactly ANB, the use of the word quack suggests unlicensed practitioners.”

Maybe to you, but to the person who wrote that definition, and those of us who understand, it suggests “unqualified and incompetent” practitioners. Mark Geier is still licensed, last I checked. So is Roy Kerry, the quack who killed Tariq four summers ago.

DAN! doctors such as Dr. Jerry Kartzinel, Dr. Elizabeth Mumper, and Dr. Bryan Jepson are neither unqualified nor incompetent and are helping many patients.

Very much agree with Lisa that some alternative therapies are relatively risk free with definite potential benefit. And some treatments, both mainstream and biomed, carry greater chances of side effects.
Makes sense to way risks and benefits and try less risky before more risky treatments.
For example, it may make sense to say try a GFCF diet, before you try psychotropic drugs.
Not sure about the definition of quackery though.
.If one broadens the definition of “quack” to mean people who are qualified but use treatments which have not been completely researched, then the many mainstream physicians prescribing drugs with off label uses could also fit that definition.
Even giving vaccines to premature babies, where they are untested for efficacy or safety in that population could be considered questionable..or “quackery” under that definition.
A lot of medicine, whether alternative or mainstream,involves trial and error.
Mainstream or biomed , you try something and see if it works.
My youngest son used to regularly vomit after eating in the morning.Maybe about once every four days? Went to the doctor and he prescribed Zantac. No effect.Next, tried giving him a probiotic every morning.He now vomits much less frequently, maybe about once every two weeks or so..
There is a lot of talk about looking for recovery and that is great, but often in my mind, improvement in various areas is terrific too.Sometimes I wonder if in some cases,for some children, recovery or even just improvement, is more a case of slowly “nickel and diming away” at little issues than one big dramatic fix?

As the children grow older and begin puberty it’s IMO important to know the approaches that can help them. One in four will develop seizures during this time , myself I want B6 and the supplements that seem to be working during this stage.I intend to use them as a precaution, I know my sister did, along with magnesium, and he actually showed a leap forward instead of what could possibly have been a time when some regress.

“If one broadens the definition of “quack” to mean people who are qualified but use treatments which have not been completely researched, then the many mainstream physicians prescribing drugs with off label uses could also fit that definition.”

The operative phrase is “deliberate misrepresentation.” One example that comes to mind is “challenge testing” for mercury toxicity, where the quack administers a chelating agent prior to urine collection. The Chicago Tribuneinvestigation exposed the dishonesty of that practice. If Drs. Jepson, Mumper and Kartzinel use challenge tests, then they are, by definition, quacks.

The Chicago Tribune article only exposed the biases of the two journalists who wrote the article.

Regarding the tragic death of Tariq…

Autism Research Review International, 2005, Vol. 19, No. 3, page 3

Chelation: The Story Behind the Headlines
“Death of boy linked to controversial chelation therapy,” the headlines shouted. The tragic story of a young autistic boy who died after suffering cardiac arrest following a round of chelation therapy provided mainstream physicians with a golden opportunity to crow about “quackery,” foolish and impressionable parents “grasping for straws,” and the dangers of “unproven” alternative treatments for autism.

To my knowledge, none of these doctors retracted their comments following the recent report issued by Mary Jean Brown of the Centers for Disease Control and Prevention. According to Brown, the boy’s death resulted, quite simply, from a drug error. The problem, according to Brown: a “look-alike” drug, Disodium EDTA, was mistakenly used instead of Calcium Disodium EDTA. Brown stated that “without a doubt” the mix-up caused the boy’s cardiac arrest, and she noted moreover that the correct treatment is virtually harmless.

So we have one tragic death, resulting not from proper chelation procedures as used by hundreds of doctors, but apparently from a medical mistake. Weighed against this, we have tens of thousands of children and hundreds of thousands of adults who have been treated safely with chelation therapy for decades. According to physician Ralph Miranda, former president of the American College for Advancement in Medicine, there have been no deaths associated with correctly-performed chelation in the past 50 years.

Since 1967 the Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, almost 25,000 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated.

Nevertheless, mainstream medical authorities would have us believe that chelation therapy—which now has a proven track record of thousands of children helped, and no deaths due to properly performed treatment—is a radical, dangerous, and improper treatment. Similarly, they say, nutritional approaches to autism treatment, such as megavitamin therapy, are unproven and possibly harmful. The only proper medical treatments for autism, these “experts” say, are drugs such as Risperdal, Ritalin, antidepressants, and other psychotropic medications.

Really? Let’s look at just how safe those drugs are…

http://www.autism.com/ari/editorials/ed_chelationstory.htm

Also see http://www.autism.com/triggers/vaccine/heavymetals.pdf for the ARI’s paper on treating mercury toxicity.

Intelligent people can disagree on treatment options, but the doctors who use challenge testing are not dishonest; they are using the techniques which they believe work the best. I’m a mom, not a toxicologist or doctor, and I cannot argue in depth about chelation practices. I can only say that:
- I know there are risks, which as Dr. Herbert said can be managed by a compentent practitioner.
- Chelation does not benefit every person with autism.
- Many practitioners and parents report dramatic improvements with chelation, supported by before and after videos, school reports, lab reports, etc.
- Many practioners whose integrity I believe in use chelation.

Here are some more facts:

Dr. Kerry, by his own admission, did not stock or use calcium disodium EDTA. Furthermore, he is an ENT surgeon, and was acting outside of his specialized area of training when he chelated Tariq. Not only was he unqualified to treat autism, but he did so incompetently. That makes him, by definition, a quack.

Chelation is not a legitimate treatment for autism, no matter how many anecdotes you allege. Kerry violated the current standard of care. He subjected the child to a risky treatment for which there is no demonstrated benefit.

Tariq was referred to Kerry by Dr. Anju Usman, a Chicago- area “alternative medicine” provider, who diagnosed the boy with aluminum toxicity.

But Kerry, by his own admission, treated Tariq for lead toxicity. There is no credible evidence that Tariq had lead poisoning. The provoked test that Kerry administered is worthless, since it uses unprovoked urine levels as a reference range. So Kerry abandoned the scientific and ethical standards that guide the practice of medicine.

According to CDC guidelines, lead and mercury toxicity are diagnosed following a careful physical examination and history, which include a plausible exposure to lead or mercury. If the history and exam indicate the possibility of exposure, a confirming blood test is ordered. The physician bases the treatment on the blood test result. Kerry chose not to follow this protocol.

“…the doctors who use challenge testing are not dishonest; they are using the techniques which they believe work the best.”

And those beliefs are not based on best available science.

ANB,
a lot to think about.Personally, if it was the Chicago Tribune(hope I’m not getting the paper wrong) who wrote that “there is an autism gene found in 65% of children with autism”, but somehow forgot to mention that the same gene was present in 60% of the general population, and did not issue any type of correction to their story, then I no longer consider that paper a credible news source. Whether shoddy journalism, or intentionally misleading, either way they have lost all credibility with me following that stunt.

Haven’t really researched the pros and cons of different chelation tests.
And am not sure whether chelation can cross the blood brain barrier to remove deposited mercury? Or how close to the intake of the substance it has to be to be effective.

Given the large amounts of mercury in the air, in fish, the lead levels in many toys,and the mercury/aluminium in the vaccines given to babies, there is definitely evidence of plausable exposure for almost everyone.
As far as I know there is no “best science” either way on the issue of chelation.Assuming the parents are aware that it is an experimental treatment that may or may not work, it would seem no less ethical on the face of it than prescribing a heavy duty off label psychiatric drug, which apparently happens all to often. Hopefully these parents are also told that there is no science yet to support the various drugs’ use, and that this is also an experimental treatment.

As Dr. Martha Herbert of Harvard University said, ““There are always good doctors, bad doctors, successes, failures and mistakes. That is not a news story. The CENTRAL conclusion to be drawn from observing parents searching far and wide for treatments for their ASD children—and reporting successes as well as failures and catastrophes—is that much more attention must be focused by mainstream medicine and federal and private funding on the medical crisis faced by so many of these children. ”

Dr. Kerry used a form of EDTA that removes calcium. In addition, he administered it in a rapid way by IV push, rather than by slow drip. These were medical errors.

If a cardiologist botched a surgery, nobody would conclude that all cardiology is quackism and that patients with heart problems should never seek treatment from any cardiologists.

Here is an excerpt from p. 231-3 of Dr. Bryan Jepson’s book Changing the course of autism:

“Although currently chelation is widely used in the treatment of autistic children, many questions remain…

“A study done on lead-exposed rats showed that the use of DMSA chelation positively correlated with significant improvements in learning, attention, and arousal regulation, and a decrease of both blood and brain levels of lead in the animals that were exposed to low, moderate, and high levels of lead early in development. They also found that rats who were not lead-exposed but underwant chelation at this early developmental stage sustained lasting adverse effects on behavior. The authors suggest that in light of these results, chelation of autistic children (who they claim do not have elevated tissue lead levels) is dangerous… The question of DMSA causing lasting harm if there are no metals present is an important one but cannot be determined using their study design since it appears that they did not provide these animals with minerals, antioxidants, or detoxification support supplements such as glutathione. It is very likely that the negative behaviors induced by DMSA in these animals were related to depletion in one or more of these areas and could have been prevented or reversed under better controlled circumstances. (87)”

He goes on to discuss questions regarding the types of chelation (such as DMPS and DMSA) ways to administer (IV, transdermal, or suppository), and the difficulties in diagnosing heavy metal toxicity (since unprovoked testing of blood and urine reflects only acute, ongoing exposure, not tissue levels or total body burden) and concludes:

“My experience and that of many other physicians treating autistic shildren is that children with autism improve with chelation therapy, and that it’s generally safe and well tolerated if done under appropriate medical supervision with mineral supplementation and monitoring of potential side effects. Chelation is promising, but needs to be further explored with quality research.”

These are not the words of a quack. There is no “deliberate misrepresentation” here. And his conclusions are indeed based on the best available science. His book is chock full of references to studies, with a long list of citations.

Unfortunately, our mainstream doctors and government agencies are reluctant to focus on the real causes of autism, focussing instaed on pure genetics and brain issues, and there is not enough research on toxicity, the immune system, digestion, and biomedical treatments. Yet, there is a growing body of research.

Doctors such as Dr. Bryan Jepson are moving ahead with finding effective safe treatments in the midst of much uncertainty. It is a very unfortunate when a child suffers from ongoing serious medical and cognitive issues caused by untreated mercury toxicity and/or vaccine-induced immune system dysruption.

“My experience and that of many other physicians treating autistic children is that children with autism improve with chelation therapy”

Dr. Jepson’s “experience” is anecdotal, and unsupported by data. He knows that, yet continues to chelate children as a treatment for autism. And you think that’s honest?

Given that autism is a developmental disorder, it’s not surprising that some children “improve” after chelation therapy. Those children will also “improve” following exorcism, or music lessons, or attending second grade. Given enough time, and no control group, most alternative treatments will be followed by “improvement”.

I’m sure you already know this.

Hera wrote: “Personally, if it was the Chicago Tribune … who wrote that “there is an autism gene found in 65% of children with autism”, but somehow forgot to mention that the same gene was present in 60% of the general population, and did not issue any type of correction to their story, then I no longer consider that paper a credible news source. Whether shoddy journalism, or intentionally misleading, either way they have lost all credibility with me following that stunt.”

Here is the relevant part of the Tribune story:

One of the studies released Tuesday found that 65 percent of autistic participants shared a genetic variation between cadherin 10 and cadherin 9, a region of the genome that controls cell-adhesion molecules in the brain. The figure for study participants without autism was 60 percent – a statistically significant difference.

Hera, you are wrong. The reporters were clear that “the same gene was present in 60% of the general population.”

What does this say about your credibility?

Maybe they made the correction? What bothers me, is the 65% vs 61% being noted as statistically significant?

No, that’s not a correction. The Trib got it right the first time. Perhaps Hera could issue a correction of her own, to let us know she respects truthful debate.

Hi ANB, In this case, I would like to think it means I am human enough to make an error,about an article which I indicated at the time I was uncertain about who wrote it,
and honest enough to acknowledge it when it is pointed out to me.

Hi, Think we cross posted.
Hope that counts as a correction.
(If not, here goes; I unreservedly apologise for incorrectly suggesting the Chicago Tribune left out pertinent information in this instance.)
Given that we are talking about putting the record straight on things, however, perhaps ANB, you would also be willing to indicate your take on the Denmark/Thimerosal study.
Given that in a previous discussion, it was pointed out that as you said a real increase in autism cannnot be proved, and so the basic justification used on the Denmark study to prove thimerosal was safe was a supposed increase in autism cases,and you did not follow up with any reply, it would be interesting to know what your viewpoint is on the study now.

I hope that your faith in the Tribune’s credibility is restored, now that you know the AoA talking point you picked up was fabricated.

My incomplete understanding of the Denmark study tells me the data indicate no decrease in autism cases, as one would expect if thimerosal causes autism. That’s a far cry from saying that Denmark experienced a true rise in prevalence in the 90s. I know the study has some methodological problems, but its results are consistent with others that have looked for a purported association between vaccines and autism, and failed to find any.

I hope that answers your leading question. ; -)

Actually this was not a “fabricated” “AoA talking point”. The AoA article on this 65%/61% issue did not refer to the Chicago Tribune article. The AoA article stated:

“Amy Wallace in her Wired Magazine piece, Paul Offit on Are We Alone radio, and now Time Magazine all report on the remarkable breakthrough of a gene found in 65% of children with autism. None mention that 61% of controls have the same gene, and none mention that like many genes before it, the gene in question has already failed the replicability test in a more recent study and almost certainly means absolutely nothing for solving the autism puzzle.”
http://www.ageofautism.com/2009/12/jb-handley-the-new-lie-65-of-our-kids-have-the-autism-gene.html

Here is a critique of that Danish study:
http://www.14studies.org/HG_2_details.html

Also see:
http://putchildrenfirst.org/chapter5.html

The Trib says 60% of controls have the same gene. You say 61%. Which is it? The researchers say the difference is statistically significant. If the researchers are mistaken, then they will be called out in subsequent studies. That’s how the system works.

It will take more than hand wringing from JB Handley to discredit the study. Time Magazine just named it one of the ten most significant medical breakthroughs of the year.

Autism research led by scientists at the Children’s Hospital of Philadelphia has been named one of the top ten medical breakthroughs of 2009 by Time Magazine.

On the magazine’s website on Dec. 8, Time cited the largest-ever genetic study of autism spectrum disorders (ASDs), published in April in the journal Nature, by a group led by Hakon Hakonarson, M.D., Ph.D., director of the Center for Applied Genomics at the Children’s Hospital of Philadelphia. That study identified DNA variations that
account for as many as 15 percent of all ASD cases. Because the gene region affects how brain cells connect with each other in early childhood, the research significantly advances the understanding of how autism originates.

“We are proud of this research discovery, and are glad to see it receive this recognition,” said Philip R. Johnson, M.D., chief scientific officer at the Children’s Hospital of Philadelphia. “It provides a starting point for translating biological knowledge into future autism treatments.”

Mark Blaxill wrote an excellent article about genetic studies here: http://www.ageofautism.com/2009/10/autism-and-genetics-what-weve-got-here-is-a-failure-to-replicate-.html

ANB, you can split hairs over 60% vs. 61% — probably a matter of rounding, as the articles stated whole numbers. But bottom line is, if the same genetic characteristic is found in the majority of people who do not have autism it is not by itself a cause of autism.

And whether that 4 or 5% difference (between 65% and either 60 or 61%) will be replicated in future studies remains to be seen.

Hi ANB, Twyla is right, age of autism did not fabricate anything.
Good to know you are human too, ANB
Age of Autism referred to Amy Wallace and her piece “An epidemic of Fear, How Panicked Parents Skipping Shots Endangers US All”
You can read it online.She states
“two studies that analyzed the genes of almost 10 000 people and identified a common genetic variant present in approximately 65% of autistic children.But that hasn’t stopped as many as 1 in 4 Americans from beliving vaccines can poison kids”
So perhaps we can unite in agreeing that the Amy Wallace article is indeed misleading and does represent shoddy journalism??

Re the Denmark thimerosal study;don’t quite get your point here. I may be misunderstanding, but think that you have previously stated you do not believe diagnosis rates can ever be used to determine actual “real” autism rates.
If there were indeed masses of undiagnosed children with autism walking around in Denmark, then over the years as diagnostic ability improved one would expect more children with autism to be diagnosed.
It would not tell you anything about triggers. In fact given that scenario, it would appear that it would be impossible for the numbers to drop until diagnostic rates=real rates.
Myy own issues with the Denmark study are related to as you point out,the poor methodology used.
And the fact that they did not use an unvaccinated control group. Hard to get much usable scientific information without that.

On a tangential topic, it intrigues me that – no matter from what perspective – the risk posed by vaccines is actually far less than the risk of injury or death as a result of a car accident or slip-and-fall. In other words, the physical process of taking a child for biomedical treatments is actually more dangerous than potential heavy metal poisoning (or, from the reverse point of view, more dangerous than chelation).

I know… this has nothing to do with the question of whether vaccines cause autism, or whether chelation is quackery.

But sometimes it helps me to take a closer look at the actual risks we undertake in contemporary life… just walking out the door and going for a drive on a snowy day.

Lisa

“ANB, you can split hairs over 60% vs. 61% — probably a matter of rounding, as the articles stated whole numbers.”

The difference between 60 and 61 isn’t important if one is calculating a tip, or estimating one’s weight (in kilograms), but in the study you brought up the difference is important. The researchers very clearly state that the difference is statistically significant. You can argue all you want that the difference is not statistically significant, but it’s hard to take you seriously if you can’t show us your math and make a coherent case for why the trained scientists who published their paper in a respected journal are wrong. Telling us the Mark Blaxill disagrees is not helping your case.

That’s a good point, Lisa. Vaccines are far safer than driving to Thoughtful House, or to the local strip mall for a DAN! appointment. The only way to fool people into believing the opposite is to misrepresent VAERS data, as GenRes does, thus inflating vaccine injury rates. A good example is the GenRes claim that Gardasil has killed scores of young girls. In fact there is no credible evidence that Gardasil has killed anyone. Yes, some girls died following a Gardasil shot, but the causes of death and timing do not indicate a cause and effect relation. It would be rather remarkable if no girl ever died within six months of a Gardasil shot, given that some 24 million doses have been given since the summer of 2006 when the vaccine was licensed.

Lisa, on what statistics do you base your statement that vaccines are safer than driving to the doctor? I don’t think we have statistics on what percentage of SIDS, autism, asthma, diabetes, severe allergies, ADHD, or other common disorders are caused by vaccines, so I don’t know how you can compare.

ANB, I did not just say that Mark Blaxill disagrees; I linked to a very articulate article by him.

Bottom line on that genetic thing — 60 to 61% of the non-autistic control group were walking around with that genetic variant, so regardless of whether you round up or down that genetic variant by itself does not cause autism. 65% of those with autism had that genetic variant — not a huge difference.

I suppose that you if truly believe that (a) all those disorders are caused by vaccines and (b) there will someday be statistics to show that a very large percentage of people actually contract those disorders as a result of vaccines then you’re right: vaccines may be riskier than cars and/or slip and fall accidents.

Personally, I believe that to be incredibly unlikely. But I will never say never.

Lisa

“65% of those with autism had that genetic variant — not a huge difference.”

But a difference none-the-less, correct? I think that was the point of the study.

On what evidence do you base your assumption that vaccines cause “SIDS, autism, asthma, diabetes, severe allergies, ADHD, or other common disorders?” That sounds like another Mark Blaxill talking point.

quote from the researcher..

A malfunction affecting one of these genes is not, in itself, enough to cause autism, the Icelandic researcher is quick to point out. It would take a combination of several genetic flaws and perhaps environmental factors as well for autism to emerge

I don’t believe anyone would dispute the “fact” that there are likely many more children that do not get autism than do, so yes, I would expect some genetic predisposition. Then he says, “perhaps” some environmental factors. Nothing in this genetic study eliminates vaccine from being the cause of most autism. JMO

ANB, that difference is already contradicted in a subsequent study.

“a new genome-wide study on autism (more on the study in a moment) appeared in the journal Nature in October 2009. The researchers, from Harvard and MIT, were surprisingly forthright in characterizing the current state of gene research and autism:
‘Modern approaches that harness genome-scale technologies have begun to yield some insights into autism and its genetic underpinnings. However, the relative importance of common genetic variants, which are generally present in the human population at a frequency of about 5%, as well as other forms of genetic variation, remains an unresolved question…Although the Nature paper identifies a handful of new genes and genomic regions, the researchers emphasize that the findings are just one piece of a very large — and mostly unfinished — puzzle…’

“Autism studies on genetic variants are plagued by this failure of replication issue. One set of researchers runs data on hundreds of thousands of genes. Invariably, they find correlations. A new set of researchers use different subjects and try to replicate the findings and finds nothing, and then the cycle repeats itself. In the case of the genetic variant that Ms. Wallace noted, the one that 65% of the kids with autism had (5p14.1, SNP rs4307059), it didn’t take long for the failure of replication to take place — six months to be exact.

“Remember the first journal article in Nature I quoted above, the one with researchers from Harvard and MIT? It came out in October 2009, six months after the 65% paper from CHOP was published. It’s called, ‘A genome-wide linkage and association scan reveals novel loci for autism’ and the article states:

“’Although there was significant overlap between study samples, each of these scans contained a large set of unique families, so we sought to evaluate independent evidence of the top SNP (rs4307059) reported at 5p14 [this is the gene from the CHOP study Ms. Wallace cites at 65%]. This SNP happens to be directly genotyped by both Affymetrix and Illumina platforms. We have a sizable number (n 5 796) of affected subjects with two parents genotyped (and of predominantly similar European background). However, we observed no support for association at this locus (T:U 354:335 in favour of the minor allele, a trend in the opposite direction as reported).’

“English translation: not only could they not find an association on the gene where Ms. Wallace, Paul Offit, and Time Magazine mention 65% of children with autism carried it, the researchers actually found that when they ran the numbers, the kids WITHOUT autism were MORE likely to carry this gene!!”

http://www.ageofautism.com/2009/12/jb-handley-the-new-lie-65-of-our-kids-have-the-autism-gene.html

ANB asked, “On what evidence do you base your assumption that vaccines cause…” Actually, I did not make an assumption, I asked a question.

Lisa said that “the risk posed by vaccines is actually far less than the risk of injury or death as a result of a car accident or slip-and-fall”. I asked on what information is this based, because the data on vaccine injury is sadly lacking.

Even obvious vaccine reactions are often not reported to VAERS. There is no penalty for not reporting them. Parents are often not aware, and doctors either don’t want to inform the parent, are in denial, or don’t recognize the event as a vaccine injury. Even when injuries are reported to VAERS we are told that this data doesn’t mean anything since a temporal association doesn’t prove a causal connection. We are constantly told that there is no “proof”. Since vaccine injured children are not studied by our government agencies and most mainstream doctors and scientists, it’s no wonder there isn’t proof.

When there is a longterm issue such as gradual development of allergies, asthma, diabetes, IBD, and/or autism, it is that much less likely that a connection with vaccines will be recognized and proven.

Our governmental agencies have never done a study comparing health conditions among vaccinated and unvaccinated children. Such a study could provide some clues.

There have been studies showing increased rates of asthma among children who received certain vaccines at a younger age compared with those who did not. There have been studies showing adverse effects of our vaccines on hamsters and monkeys. There are numerous accounts of parents reporting vaccine reactions in their babies and children. I could cite all these and then listen to ANB nit-pick the studies and dismiss all parental reports as anecdotal. But my point at the moment is not to prove vaccine injury but to say that there is a dearth of statistics, which is one of the ways that those who manage our vaccine program are failing us.

As reported by CBS News: “According to [Dr. Bernadine] Healy, when she began researching autism and vaccines she found credible published, peer-reviewed scientific studies that support the idea of an association. That seemed to counter what many of her colleagues had been saying for years. She dug a little deeper and was surprised to find that the government has not embarked upon some of the most basic research that could help answer the question of a link.

“The more she dug, she says, the more she came to believe the government and medical establishment were intentionally avoiding the question because they were afraid of the answer.”

http://www.cbsnews.com/blogs/2008/05/12/couricandco/entry4090144.shtml

As Dr. Bernadine Healy has written,
“Less than a year ago, the National Institutes of Health put out a call for expanded research on vaccine safety that contains many of the very things that parents are asking for: examination of the way the immune system handles different vaccines, the impact of nonvaccine components (like mercury and aluminum), and better understanding of susceptibility to vaccine side effects. The government laid out the need for markers that might predict vulnerable groups and proposed research on the comparative effect of different vaccine schedules and combinations of vaccines. This work is long overdue; shockingly, so is a study comparing groups of vaccinated and unvaccinated children.

“Paul Offit, an infectious-disease expert from the University of Pennsylvania who has been a frequent spokesman and adviser on vaccine policy (and by his admission has become wealthy by developing the now mandated rotavirus vaccine), has said on more than one occasion that the infant’s immune system can handle 10,000 vaccines. If that’s where we’re going—and it has been estimated that there are more than 100 new vaccines in the pipeline—the national investment in vaccine safety had better get on steroids fast. More medicine is not always better medicine. As the move toward health reform recognizes, this can make for poor public health policy—and break the bank.”

http://www.usnews.com/health/blogs/heart-to-heart/2009/04/14/the-vaccines-autism-war-dtente-needed.html

“Nothing in this genetic study eliminates vaccine from being the cause of most autism. JMO”

Nothing in the study prevents television from causing autism, either, or sun spots. The study was very conservative in its conclusions, as many solid studies are.

I would have to see the study to understand the numbers. I’ve read various links that cited it, yet can’t seem to find the actual study. I wonder if both sides were equal in number, the same amount of autistic children vs an equal amount of controls. If heavy on the controls it would account for the slight difference in numbers. What does this study suggest? Most children are at risk of developing autism, so let’s stop the genetic research and start looking for that environmental trigger? My question is this, with autism we know the stats suggest one in four are boys, given this we have to consider most tested within the autism group were boys, I want to know the M vs F numbers of the group that made up the 61% controls. Were they careful to bring into these numbers the same ratio found within the autistic group? This information could put a different spin on things,IMO. Maybe given these genes and not testosterone = no autism?

IIRC, the “testosterone hypothesis” was spun by Dr. Geier, which is based on a 1960s-era paper that shows testosterone forms crystal “sheets” when combined with mercury.

I don’t know about the “Testosterone Hypothesis”, and will spend some time today looking. There is nothing more obvious, however, than testosterone being a major part in the development of autism.

Geier relies on the “obvious” testosterone angle to justify chemically castrating disabled children. Probably not the company you want to keep, Barb.

Chemically castrate…awful! That’s how I feel about most drugs, so I’m not surprised, but “know nothing” about this. I want all the junk science thrown away quickly, I see my 2000 becoming agressive, I want answers now before he becomes a felon. Puberty isn’t far enough away for me, I want the drug companies to pass out the antidotes to the problem they “know” they created, and I do hold them responsible, not so much for the stupidity of poisoning the children in the first place, but for the denial which keeps the “fix” out of reach.

I posted a comment yesterday which did not appear, alas — probably because I put two links in it. I’m hoping it will show up eventually.

Wow, this is pretty amazing: Dr. Thomas Insel, who is Director of the National Institute of Mental Health and Chair of the federal government’s Interagency Autism Coordinating Committee (IACC), told David Kirby that, “he never saw a single case of autism during his training in the mid-1980s, including a full year’s rotation in child psychology. ‘I wanted to see children with autism. I couldn’t find them,’ he said. ‘Now I wouldn’t have to go any further than the block where I live to see kids with autism today.’”

And: “‘As far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected,’ Dr. Insel told me [Kirbby] in a telephone interview on Friday. He said factors such as better ascertainment ‘don’t really explain away this huge increase’ and that ‘you really have to take this (increase) very seriously – from everything they are looking at, this is not something that can be explained away by methodology, by diagnosis.’”

And: “Insel said, ‘It’s quite believable to me that there are many children who develop autism in the context of having severe gut pathology, of having autoimmune problems, of having lots of other problems. And some of these kids really do recover. And that is quite different from the autism that was originally described in the 1940s and 50s – where it looks like you have it and you are going to have it for the rest of your life.’”

and more at http://www.ageofautism.com/2009/12/david-kirby-dr-insel-on-rising-asd-numbers-no-question-about-environmental-factors-.html

His comments were in response to the CDC study just released, which says that 1 in 110 of the children born in 1996 had autism, compared with 1 in 150 of the children born in 1994. What could have caused this big change? Not increased awareness and better diagnosis. Both birth cohorts were counted at age eight, by which time most autism has been diagnosed. During that two years, there was not a change in definition. Any “increased awareness” and “better diagnosis” occurring in a two year time time period could conceivably have resulted in slightly earlier diagnosis among the later group, but by age eight any “increased awareness” would have caught up with that birth cohort.

What changed during that time period? Well, here’s one thing that changed. The uptake rate of the Hepatitis B vaccine among infants increased substantially (from about 27% in 1994 to over 90% in 1998). This vaccine series (containing thimerosal at the time) added 62.5 more micrograms of mercury to the vaccines received by these babies.

ANB, in a few years your outdated views will have gone the way of the dinosaurs.

I found this post on one of your earlier links, Twyla. Thanks, it does point toward “them” knowing exactly what this study proved. What then is protective in the 61% of controls?

Rat pups dosed postnatally with methylmercury had significant reductions in neural cell adhesion molecules (NCAMs), which are critical during neurodevelopment for proper synaptic structuring. Sensitivity of NCAMs to methylmercury decreased as the developmental age of the rats increased. “Toxic perturbation of the developmentally-regulated expression of NCAMs during brain formation may disturb the stereotypic formation of neuronal contacts and could contribute to the behavioral and morphological disturbances observed following methylmercury poisoning” (Deyab et al, 1999). Plioplys et al (1990) have found depressed expression of NCAM serum fragments in autism.

For a complete transcript of the interview with Dr. Insel, go to http://images.huffingtonpost.com/2009-12-19-Insel.doc.

Oops, there was a period on that link.

http://images.huffingtonpost.com/2009-12-19-Insel.doc

“ANB, in a few years your outdated views will have gone the way of the dinosaurs.”

And yet empiricism will live on and on. Go figure.

Wow, Twyla,XMRV, a retrovirus, found in forty percent of those diagnosed autistic. This would explain the regression, just as we were discussing last week…the symptoms of inflammation in the autopsied brain resemble that of MS/HIV dementia/als, etc. A retrovirus certainly makes sense, and none of the parents had it, so where is the origin, a contaminant in an injection of vaccine?! Another thing, I’ve never heard of an organophosphate fertilizer, organophosphates, such as dursban were used extensively in the late 70’s into the 80’s in lawn care/schools/homes as an insecticide..the dangers became evident and the useage was scaled back, that would not explain the increase in autism in the late 90’s.

Barb, when you refer to “the increase in autism in the late 90’s”, do you mean for all ADS, or just one or two?

I’m just countering the suggestion in the link info concerning organophosphates. Organophosphates yes, are neuro-toxic, they were designed for use in warfare as nerve poisons, and were NOT used in around our farm fields ,homes and gardens until the early sixties. If anyone is adding nerve poison to fertilizer it wouldn’t be active as a fertilizer because it simply is an insecticide. Maybe they are gaining some dual effect, anti bugs/plant growth? Surely malathion and others have been dumped on our animals , put on pest strips/ termiticided our homes for thirty years, however, in the last ten years the use in and around the home has been strictly curtailed. This is what I meant by this not being a good suspect in the “current” rise in autism apparent in the last few years. Then there’s the “what if”, and I always make room for that possibility. When it was deemed smart to remove organochlorines from the environment, they were replaced with organophosphates, now the replacement could be in question, I believe the replacement may be the pyrethroids and the pyrethrins. What if they cause autism? I do not believe autism is caused by any “ONE” thing. I saw my child, my nephews, I saw regression after vaccine, I believe vaccine causes a large amount of autism, but not all.

well..gee..and here it is…

http://www.medscape.com/viewarticle/574799

For an interesting discussion regarding causation and treatment, see this Larry King Live show linked to at:

http://www.ageofautism.com/2009/12/age-of-autism-award-jim-carrey-quote-of-the-year.html