Jenny McCarthy: responding to criticism

First, an apology.

My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a result many parents who are favourably inclined towards biomedical interventions for autism have boosted my stats. And many of them have left critical comments that merit a reply. But not all of these are attached to the Jenny McCarthy posts. So I am trying to deal with them all in one blog post.

When reading the comments I noticed a number of common themes.  Liz summed up a lot of these themes in an insightful comment:

I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!

There are four main ideas here.

  1. Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.

  2. Consequently they claim that there are no answers to autism.

  3. Parents are not impressed by this and look elsewhere.

  4. They find their own answers and their children make progress.

 These are very important points. When you get  diagnosis for your child you do not immediately google “Autism” and look up your nearest DAN doctor. You ask your regular physician about what happens next and for many people the answer is not satisfactory.

Michael Fitzpatrick is a doctor and also the parent of an autistic child. In his book, MMR and Autism: what parents need to know, he quotes from the Oxford Handbook of Clinical Specialities, a popular reference with British junior doctors.

“Autism:

This neurodevelopmenal disoder is, if severe, the antithesis of all that defines mental health.

Prevalence: up to 90/10,000 of those <16yrs old – estimates vary considerably. Sex ratio M/F = 3.

[...]

Treatment: this is not effective. Behaviour therapy may be tried. A good teacher is more helpful than a good doctor.

70% remain severely handicapped. 50% will develop usful speech. 20% will develop seizures in adolescence.  15% will lead an independent life.

Apply for benefits (disability allowance if in UK).”

Fitzpatrick goes on to write,

“Its summary of medical wisdom on autism conveys with brutal economy the simple facts that doctors do not know what causes autism and have no treatment for it. Furthermore, the prognosis is grim: apply for benefits.”

Our knowledge and understanding has moved on in the 10 years since this edition of the Oxford Handbook was published. Though I doubt that this has had a major impact on the medical profession. Autism remains a rare condition when compared to childhood complaints like asthma and eczema. It is also rare in comparison to psychiatric disorders in children. So there is little imperative on doctors to update their knowledge when there are other more pressing claims upon their time.

NO HOPE or FALSE HOPE?

Still, I am surprised and disheartened by parents commenting that their doctor told them there was “no hope” for their child. Do doctors really say this to parents? Or do they say something like “there is no cure but …” by which time the parent has stopped listening, their distress on hearing the diagnosis compounded by their despair on hearing that there is no cure? Their hopes are dashed in the doctor’s office and they go away believing that nothing can be done. Only later, when they come across websites that proclaim that autism is treatable, do they regain their hope and become converts to the cause of biomedical intervention.

CAUSE and EFFECT

Defeat Autism Now makes all sorts of claims about the causes of autism. But they cannot point to any well designed scientific studies that demonstrate causation. Instead they rely on patient testimonials, or more accurately, the parents of patients testimonials. “Recovered” or “recovering” kids are displayed at conferences and video evidence is posted on the web. This is not scientific proof. It is advertising. I am not saying these kids have not improved. I see kids improve all the time in the school where I work. I saw my own son improve.  I am saying that, in the absence of properly controlled scientific studies, claims for particlar treatment protocols cannot be verified

Sometimes improvements are dramatic. Children seem indistinguishable from their peers, as well they might in a supportive environment where staff follow the advice of the Child and Adolescent Mental Health Services.

Psychological treatment programmes can help parents/carers in modifying children’s behaviour, enabling them to cope with specific difficulties and ensuring optimal schooling. Helpful advice to parents is that it is more effective to change the environment around the autistic child than to attempt to change the child.

This is helpful advice to schools as well. We do well to remember that autistic spectrum disorders are developmental disorders. These children are not frozen in time. They grow and develop, though not always in the ways we might expect. Creating an environment that plays to their strengths is likely to be more productive than constantly reminds them of their weaknesses. As I wrote elsewhere:

We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem.

COMMONSENSE versus SCIENCE

There are still parents who will insist that they know the treatment worked. This happened with Secretin. Victoria Beck reported a dramatic improvement in her son’s autism after he was given Secretin to test pancreatic function. Secretin was enthusiastically espoused by DAN. The late Bernard Rimland claimed:

The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism.

Rimland was so convinced that he and Beck secured the patent for using secretin to treat autism and sold it on for a reported $1 million USD to Repligen Corp. There was nothing wrong with this deal. They were paid in shares in Repligen which they made over to the Autism Research Institute. The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to  work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.

Chelation is another remedy favoured by DAN practitioners. But autistic kids do not like taking strange medicines by mouth or being strapped down for a slow intravenous infusion. So some enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.

When people think something works, where there is no scientific reason for it to work, we call it the placebo effect. That does not mean they were conned or are trying to con the rest of us. Placebo affect means people get better because they think they will get better. You can call it faith healing or the power of positive thinking. It is a real effect and one of the reasons why the gold standard of medical research is the double blind study in which a control group is given a placebo and nobody, neither the researchers nor the patients, knows which is which until after they have evaluated the results. The experimental group must not only show benefit, they must also show a significant benefit over and above the group on the placebo.

But how does this explain improvements in autistic children who are given placebos? They may be completely oblivious to what is going on. First there is an important effect noted by researchers into regressive autism, the distressing condition where children develop normally and then lose previously acquired skills or fail to progress thereafter. From a previous blog.

Much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. Aitken knows this. It is in the same study by Taylor et al.

“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
(Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. page 395)

We reinvent our memories in the light of experience. Memory is not a transcript of history. It is a constantly changing attempt to interpret that history with the benefit of hindsight. So parental accounts may not be the most reliable evidence without external corroboration.

Secondly, children are very sensitive to the emotional state of their parents or other primary caregivers. You can get a vicious circle where totally stressed out parents unwittingly add to their child’s stress. The child then freaks, adding to their parent’s stress, et cetera, et cetera. Then someone offers the parents a way forward. They feel empowered. They are less stressed. They approach their child with a more positive outlook. They are consistent in their dealings with their child. The child senses all this and benefits from the change in his parents. We have placebo by proxy. The parents think the therapy changed their child when, in fact, it was their belief in the therapy that changed them and then their child changed in response to the change in themselves. The therapy did not cause the change directly. It was the catalyst for change.

JENNY and I.

Most parents are not au fait with the scientific method or the history of autism. And why should they be? They have been thrust into a difficult situation and may not be enjoying the best of support from professional agencies. This makes them vulnerable. They are looking for a way out of this mess. They turn on the TV and see Jenny McCarthy spreading her message of hope. Who would not be sold in those cicumstances? Then Google brings them here and they read me bad mouthing Jenny. Outrage!

Listen up. McCarthy is only spread all over the media because she previously spread herself all over the pages of Playboy. Why should the opinions on autism of a young and buxom, B list celeb and wannabe film star be more credible than those of an overweight, middle-aged guy like myself? Last year McCarthy was an indigo mother with a crystal child. Her kid was the next stage in evolution. Then he became some kind of toxic disaster zone and now he is cured. Oh, and it was the vaccines what done it! This from a woman who had her son circumcised because she wanted him to have a “pretty penis.” Excuse my cynicism, please.

YOU and I 

I have tried to address general criticisms of my position rather than go for a point by point rebuttal or engage in personal arguments. If anyone thinks that I have ducked their question or ignored their point of view, please feel free to repost it in the comments to this post and I promise to respond.

34 thoughts on “Jenny McCarthy: responding to criticism

  1. Fortunately, a number of parents have videotape of pre-autism infancy/toddler stages so we have nothing to prove to anyone.
    As for science vs. antecdotal, without antecdotal, science would never have commenced. What is the arguement here anyway? Whether these kids were autistic from birth? With the number of women taking flu shots and Rhogham shots, that is more than sufficient for causation as far as “at-birth” beginnings. The rest of them, it is a matter of environmental toxins – whether directly injected or inhaled passively. And yet another sub-group of autism…… this is probably the viral bunch, though, as I have come to learn, mercury binds viruses to the body, ergo the mercury is the culprit once again.

    As for Jenny McCarthy and her child’s identity in this world (the indigo thing)…….. common sense prevailed. She viewed her child as “the science.” That is how I have seen my son for the past five years.

  2. I read a parents’ comment somewhere:

    “How do I contact Jenny concerning our son’s autism?”

    … and then he provided his e-mail.

    All this McCarthy stuff just looks WAY too stupid for someone who have studied the debate for much longer. It’s like seeing millions of land crabs getting stuck in your living room when they try to reach the sea, while the sea is really the other direction.

  3. I believe a lot of parents do get the placebo effect, and are familiar with the research that says autistic children do develop and that some have a successful outcome, without anyone really knowing why that happens. They might understand confirmation bias, the need for science to verify guesswork and so forth. But they might still think, “what’s the harm in trying?” It comes down to whether it’s right to treat children like guinea pigs. Harm could theoretically be done that might prevent a child from having an otherwise successful or fair outcome.

  4. Earlier this year my older son stopped saying a lot of words and went to making vowel only vocalisations. After a few months he picked them up again and then started to say more spontaneous things. We have to get into his frame of mind, but he says and signs a lot more than he did this time last year. Sometimes he’ll reply to something he’s heard earlier that day, eg one day I asked him at lunchtime what he’d done in PE at nursery and then three or four hours later he shouted at “parachute! Big Circle!” Sometimes he’ll say something that makes sense once you fill the rest in. Eg “town, lift, five!” means he wants to go in the lift in one of the shopping centres and we catch it on floor five. “14!” refers to our house and means he thinks we should go home.
    If you ask him a question that isn’t along the lines of “what’s this?” or try to have a conversation with him he struggles, but a lot of the time we can understand what he means when he says or signs things and then we repeat them back and expand on them to let him know we understand. The thing is, is that he goes to a special needs nursery for about 12.5 hours a week, term time only. We’ve done no therapies with him, no special diets, I’ve always kept his diet free from as many additives and preservatives etc as possible long before we knew he was on the spectrum but we’ve never implemeted the GFCF diet for example. We do use Makaton with him and show him pictures and objects of things and have found that the quieter and calmer the environment the easier he finds it to process things. He’s markedly different now from most other children his age and he’s doing wonderfully.

  5. I think someone needs to do more research on the DMSO that is used in transdermal creams because it does allow substances into the body. Someone seems to have a big CHIP on their shoulders here about parents and Dr.s that have seen and recovered children. If we waited for the drug companies,govt ect to do the scientific studies we would certainly be holding our hands over our, well you know. The different biomedical and dietary interventions do work for some and they do go on to be managed recovered, often blending right in with their peers. Don’t knock what does work just because it may not work for everyone. I know this because I’ve lived it, and continue to.

  6. Mumkeepingsane,

    Please don’t hold your breath waiting for an answer to your question.

    Mercury can bind to viruses and has even been shown to cause them to aggregate.

    However, since viruses lack the metabolic machinery to deal with mercury, it simply kills them.

    The bulls**t about autism and mercury proliferates faster than sensible people can answer it. Since it takes only a functional imagination and Internet access to promote an unfounded “Just So Story” about autism (or anything else)on the Web, “Googling” for information is probably the worst way to find out the reality of anything.

    And yet, “Google” was how Jenny McCarthy found out everything she knows about autism.

    ‘Nuff said.

    Prometheus

  7. “The different biomedical and dietary interventions do work for some”

    There’s no reason to think they have worked even for one child. It’s like saying that Secretin did work for Victoria Beck’s son, so it might be a good idea to try it. What we’re talking about there is most likely coincidence.

  8. Welcome back Mike, and good thoughts in my opinion.

    re Googling

    Web researchers must know to take results with a grain of salt, and refine searches, not to be just drawn into the first few things that pop out or look eyecatching.

    I wouldn’t have run into the Hub without Google.

    And I probably wouldn’t have learned enough about the surgery prospects for OSA, or about Asperger’s without web searches.

  9. Adding my appreciation for your article, Mike.

    Another thing is that once people think they have the answer, “It was the vaccines” it seems next to impossible to ge them to consider that it could have been something else, even if they want to blame a “trigger” how on earth could anyone rule out a million other “exposures”. Chemicals are all around us all the time. Viruses and bacteria are all around us all the time. One of the most toxic substances around is commonly found in peanut butter.

    http://en.wikipedia.org/wiki/Aflatoxin

    There are other chemicals that actually could hinder develpment if the mom is exposed, but the mercury phobes and antivaxers like Jenny McCarthy give every other chemical exposure their baby had a pass.

    Jenny, the idiot, smoke through her pregnancy! She also seems to say in one of her books that she didn’t breastfeed her kid. Formula lacking some nutrients has been associated with autism. Jenny talks about “legal narcotics” or something like that. Given the kind of lifestyle she’s had, one wonders what kind of drugs she may have been taking when she was first pregnant, or even in later pregnancy. It’s naive not to ask such questions.

    It totally amazes me that parents think there ought to be a “biomedical” (read pill or injection) treatment for autism.

    I never hear that parents of intellectually disable (mentally retarded) kids go to the doctor and say, “What can you do to cure my child?” And then when the doctor says, “We don’t have a cure for MR…but….” the parent interrupts and says, “Fine then, I’ll go find someone who WILL write a prescription for a pill that will cure my Bobby.”

    I swear, parents of autistic kids look absolutely bizarre when they demand a “cure” from medicine.

    I see the MIND Institute is pursuing ADHD, Frag X and Tourette’s now to a great extent. I think they will find the difference between the parents of these other groups to be rational by comparison.

    I also expect that they won’t treat adults with ADHD, Frag X and Tourette’s like scum below their feet, as they do autistic adults. I don’t see them demonizing Frag X, ADHD or Tourette’s with their advertising, either. They recently hired an **ADHD expert** who noted in the MIND’s newsletter I got yesterday, how hideous autism was because she read how parents loved their autistic child but got no love back from the child! She’s there to study ADHD and took time out to bash autistic kids. Nice.

  10. “as I have come to learn, mercury binds viruses to the body”
    _Where did you learn this? Evidence or proof please._

    Because Stan Kurtz sez so.

  11. I stumbled across your blog by accident, and am glad I did. I do not know anyone with autism, but I recognize that it is a horrible disease that needs more study, support, and knowledge base, and to that end especially I think you are doing some fine work here. Very informative. Thank you.

  12. Thanks for the link Unrulyone.
    Perhaps if you got to know some autistic people you would revise your opinion that it is a horrible disease. It is actually a developmental disorder that can have a wide range of outcomes, not all of them bad.

  13. “They recently hired an **ADHD expert** who noted in the MIND’s newsletter I got yesterday, how hideous autism was because she read how parents loved their autistic child but got no love back from the child!”

    Aaarggh! When will people learn that just because a person may not say “I love you” or hug, doesn’t mean they don’t love another person. As a child I never said “I love you”, even in reply and I can only say it now if my mum says it first. I’ve never said it to my dad and only once to one of my sisters. I say it to my mum in reply when she says “love you” on the phone. I was in my mid to late twenties when I first did. I can remember being about nine or ten and getting very upset because mum had made us some jam tarts and instead of just saying “thank you” I gave her a kiss on the cheek, which at the time I thought I was only supposed to give kisses just before bedtime.
    So someone watching me might have thought I was cold and unconcerned and devoid of love. They couldn’t have been more wrong. My parents were my world to me. You know that belief that your parents are omnipotent and can do no wrong? I kept hold of that belief until my mid teens and to a lesser extent for a few years after. I showed that I loved them by researching things that interested them, writing them stories or watching my mum bake so I could stay with her.

  14. The problem in my perspective is that no one is interested in doing any kind of studies on whether or not DAN treatments work, or are effective. Us as parents treating our children cannot win. If we show the positive results of following the protocol (recovery, improvement, etc.), we are accused of advertising. What many people fail to realize is that most criticize when failing to rationally think of this one important point: Us as parents are often the sole caregivers of these children, and we are the ones who are seeing the results. NO ONE LISTENS TO US, PERIOD.I shutter to to think of what our lives would be like if we had not implemented biomedical into my daughter’s life. At her level of impairment, I have no doubt she would be in a residential facility.

  15. Julianne,

    Perhaps I did not make myself clear. I accept that there are some children who develop normally and then regress. I accept that autistic children do develop and make progress and that some of them make so much progress that being autistic no longer impedes their participation in society.

    But this is not exclusive to children getting biomedical interventions. It happens across all treatment modalities and amongst children who receive no special therapies or interventions. Many parents are using a special diet, special supplements, chelation, ABA, plus speech and language and/or occupational therapy all at the same time. How can we know which, if any, interventions are responsible for a child’s improvement?

    My argument is with the DAN practitioners who claim to understand the cause and the cure for autism. If mercury is the cause what is the mechanism? What is the timescale? Where is the proof? These are reasonable questions for a parent to ask before allowing a physician to treat their child.

    Regarding autism at birth and prenatal mercury exposure; damage in utero is likely to be permanent. This was the case for thalidomide induced autism. It was the case for rubella induced autism. Any doctor who tells you the mercury in your flu shot or RhoGAM shot caused your child’s autism and he can cure it is wrong. Even if the thimerosal hypothesis was true, removing the mercury would not remove the damage it allegedly caused.

    If your kid is doing well that is great. If you believe this is down to some magic intervention that is OK by me. But if you or anyone else wants me to believe the magic, sorry. Hard science, now that is another matter.

  16. Kathi,
    regarding DMSO, are you saying that DMSO combines with DMSA and transports it transdermally because DMSO is miscible with oil as well as water and is therefore theoretically capable of such a transport? If so, do you have citations to support that statement?

    Regarding your positive experience of biomedical interventions, if I may point you to my reply to Julieanne, how do you know it was the biomedical interventions that worked when so many people report similar results without recourse to those interventions?

  17. Jennifer,

    I agree with you. I wish people would do real scientific research into DAN treatments. But DAN practitioners are against this. Lorene Amet, DAN practitioner for the Autism Treatment Trust in Scotland wrote in an article for the NAS magazine, Communication that we cannot test these biomedical interventions because,

    “the biomedical treatments that some feel have been shown to lead to recoveries are complex, comprised of several inter-dependent parameters, and carried out over a long period of time, usually for a minimum of two years.”

    I replied thus.

    “So studies on mice, monkeys and in vitro are good enough to suggest treatments but those treatments cannot be subject to clinical trials. This is quackery pure and simple.”

    The guys taking your money ought to step up to the plate and provide the science to silence critics like me. I am not accusing you of advertising. I am accusing the doctors and scientists that you rely on of using your testimonials as a form of advertising instead of submitting their theories to proper scientific peer review.

  18. Hi, Mike! First time commenter, and I really appreciate your blog.

    While parents complain that studies aren’t being done on these treatments for autism, what about the studies that have been done? The recent ABA studies, while not as big as they needed to be, the studies of mercury, of mmr vaccines, the gluten and casein free diets…are these not getting to people? Don’t people know about these studies?

    I knew from the stats that the diet didn’t really work for ASD folks because the numbers that benefited were similar to the numbers found in the general population.

    There’s been so many studies done on mercury, there’s no question about the evidence, yet denial is there about those results.

    Etc., etc., etc.

    There’s one thing we overlook in addition to the idea that every one with autism continues to develop: maybe it’s the parents’ concentrated interaction with the child that’s helping, and not the “intervention” chosen. Maybe it’s the involvement…what child wouldn’t respond to that?

    And that’s a good thing.

    Metta.

  19. Welcome Rjaye,

    Yes, the studies are out there. But there are some longstanding and influential advocates of the mercury-causes-autism-hypothesis in organizations like Safe Minds and the National Autism Association who issue routine condemnations of any research that does not support their position. They do not limit themselves to the science either. Researchers’ honesty and motives are questioned. They have suffered harassment and attempts to get them fired.

    On the other hand, anybody who supports their view gets a free ride. There is a very good op-ed piece in the Wall Street Journal by Dr Ari Brown that mentions Jenny McCarthy.

    “Ms. McCarthy told Oprah that her son was a normal toddler until he received his Measles, Mumps and Rubella vaccine (at 15 months of age). Soon after — boom — the soul is gone from his eyes. Yet she contradicts herself in her book: “My friends’ babies all cracked a smile way before Evan did . . . he was almost five months old.” Which is it? Was he normal until his MMR vaccine or were some of the signs missed before he got that shot?

    “Ms. McCarthy also contends that mercury in vaccines caused damage to her son’s gut and immune system, leading to autism. Yet the mercury preservative Ms. McCarthy assails was removed from the childhood vaccination series in 2001. Her son, Evan, was born in 2002.

    “It’s hard to trust Ms. McCarthy’s medical degree from the University of Google — she comments about the Hepatitis C vaccine that wreaked havoc on a friend’s child. An inconvenient truth: There is no Hepatitis C vaccine.”

    Will McCarthy be called on these errors and inconsistencies by her friends in the mercury militia? Somehow, I doubt it.

  20. Hi Mike,

    What a great post this is. I know I don’t comment much, but want to thank you.

    I also addressed some of this in my paper: The Mismeasure of Autism: The Basis of Current Autism “Advocacy.” This would make a great addition to it in some way. (Will need to figure that out).
    Estee

  21. Mike,

    To answer Kathi, it is possible that DMSO enhances transdermal absorption of substances such as DMSA (a chelating agent), but it hasn’t yet been shown. DMSO enhances transdermal absorption of some compounds and not others.

    And that’s the funny part.

    The evil drug companies (you know, Big Pharma) would have to show that their transdermal drug was actually absorbed.

    “Alternative” autism practitioners, on the other hand, do not know if the drugs they give you to smear on your child’s skin are ever absorbed.

    This issue has been brought before some of the key players in transdermal autism therapy and their reaction has been, “I’m too busy to find out if my remedy gets absorbed.”

    Remember, it is their ethical responsibility (if not legal responsibility) to find out if their cream works before they start selling it at $150 an ounce.

    As far as “someone” doing studies on “alternative” autism therapies, the usual procedure is for the people who want to market a product to test the treatment before they start to sell it.

    It is completely backwards to market the treatment and then insist that “someone” do the research to see if it works and is safe.

    Prometheus

  22. It’s sad that the only way some people will listen, open their minds and look outside the box is when something like this actually happens to your own child. I don’t have to be convinced of the damages the MMR can do. Our child is proof, so is the emergency room visit and the complete change in his whole being. My son has autism and our story is frightening familiar to Jenny McCarthy’s and so are thousands of others. If you lived in our autism community, it would be easier for you to understand, but most of you don’t. You don’t see what we see, have seen and you never will. What’s sad is how judgemental people can be when it comes to Jenny. All of the judgements are coming from people who do not know her, never met her and will never meet her.
    There should be more focus on the pharmaceutical companies and some of the medical community. Now, that’s where the lies and the cover-ups are. Most of you know what I’m talking about. It’s no secret what’s really going on. It’s taken some time but the truth is slowly coming out and certain people(especially the pharmaceutical companies) are starting to panic.

  23. Hi again, Samantha

    I am not judging McCarthy the person. I am judging McCarthy, the official spokesperson for TACA. She contradicts herself. She makes basic factual errors and she makes statements that are not supported by the scientific literature. And she does this on prime time TV and is spreading misinformation that will damage the vaccine programme and lead to children suffering from preventable diseases. That is my beef with Jenny.

  24. The vaccine program has already been damaged. They have poisoned alot of our children and until they change some of the ingredients in the vaccs, begin to take responsibility, and stop lying to us, it will continue to be a huge issue. I am one of the thousands of parents who waive my children’s vaccinations. If anyone is at fault it is the pharmeceutical companies and those who support them in this. Until they step up and be honest with us, I will continue to support those who refuse to vaccinate.

  25. Actually, Samantha, those who are listening and have learned to truly think outside the box, realize there is no vaccine conspiracy and really dislike their kids or themselves or their friends being falsely referred to as “poisoned”. And why should any of us need to meet or know McCarthy in order to adequately analyze whether or not what she is promoting has any basis in scientific truth? Either she can stand by what she claims or she can’t. Knowing her personally shouldn’t have anything to do with that. And what exactly is “your autism community”?

  26. I apologize. I, initially, didn’t read to see what this website is all about or what it represents. I stumbled upon it and regret it. I am, obviously, in the wrong place. I will not bother you all again with my comments. Thanks :)

  27. Samantha,

    Actually, you are in exactly the right place. You will never hear any doubt or questioning of the “vaccines-cause-autism” dogma on any of the “biomed” sites – they simply won’t tolerate it.

    Take a moment and think about it – if there really was a massive conspiracy to “cover-up” the “fact” that vaccines (MMR or others) caused autism, wouldn’t you have expected to hear from a “whistle-blower” (or several) by now?

    The CIA can’t keep its extra-territorial prisons secret for a couple of years, yet somehow the CDC, FDA, AMA (which onlt has 18% of US physicians as members) and Big Pharma have managed to keep tens of thousands of people from talking?

    You’d think that somewhere, some GS-4 clerk would have decided that he or she could make more money in one appearance on Oprah than they could in a lifetime at their job. Yet, for some inexplicable reason, nobody has come forth to tell the whole sordid story from the inside perspective.

    Strange.

    There are a number of parents who share your story of regression after the MMR – there are also a number of parents whose children showed regression between 15 and 18 months but didn’t get the MMR jab. Perhaps, just perhaps, the story is a bit more complicated than you see it.

    I hope that you keep coming back and that you will try to keep an open mind.

    Prometheus

  28. Sorry, just had to respond to the “original cali biomed xpert” before I leave this site: You do not speak on behalf of most of us or our children with autism. This subject is cut in half just like politics. Those of us who believe and those of you who don’t. I am not alone in my belief as you can see by the number of vaccination waivers being signed nowadays and the other organizations out there like safeminds, taca, dan and many others. Like I said, I’m sorry for stumbling onto this site. I wouldn’t have responded the first time if I would have known who I was dealing with. I thought this was an open forum in an actual autism group not a one mans belief site. sorry for the intrusion.

  29. “I am not alone in my belief as you can see by the number of vaccination waivers being signed nowadays and the other organizations out there like safeminds, taca, dan and many others.”

    That’s not actually “belief”, it’s really HYSTERIA. I’m all too familiar with SafeMINDS, TACA, DAN, et al. They don’t speak for me or my child. I am totally offended by the way Lisa Ackerman spins her tale of deception about “poisoned” children who are “toxic train wrecks”.

  30. I’m a first time poster who just happened to stumble across you website. Thank you for providing such an informative site and forum to discuss these issues. I am a mother of 5 children (3 are from my husband’s first marriage) and 4 have ASD. Our eldest was diagnosed with Asperger’s at 12 and received only some social skills training as we learned to navigate the ASD road. Our 3 youngest have received behavioral intervention only. No biomedical interventions whatsoever and I can say that my children are thriving. Our 11 year old son is in regular classes in middle school with minor accomodations, our 4 year old daughter is capable of nearly age appropriate conversation – the echolalia is still present but lessens as she ages and attends an SDC preschool – and our 2 and 1/2 year old went from non verbal to speaking in two word phrases after 9 months of speech and 2 months of ABA.

    The fact that people can see the same “miraculous” results with and without biomedical interventions would, I hope, give a parent pause. I am in “your community” and I know what you go through and I know that desire for the quick fix. I know that feeling of wanting, NEEDING to do something so you can feel like your the one in charge not the autism. When considering treatments try and keep perspective. Don’t just take one side’s opinion but research the pros AND cons. Support research in any way you can (CADDRE in the U.S. is beginning a 5 year nationwide study called SEED – study to explore early development for example). And be respectful. Remember that whatever your feelings about the cause and best treatment for autism in the end we’re all working towards the same end – trying to help our children grow and realize all the potential they carry inside of them.

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