The Myth of Recovery

1 Sep

Back in August of last year I wrote a blog entry about the Generation Rescue ‘recovery’ stories and how true recovery actually accounted for 5% of the stories on their website which I upgraded in May of this year when they redesigned their website. Their true recovery figure now stands at 7%. I even recounted how I sent my own daughters details to them under an assumed name using the exact truth about her state and condition which they duly published.

I was interested to come across some more fascinating dialogue between members of the Yahoo ABMD group – a group which believe mercury caused their kids autism and Biomed can help them. This is one of the oldest and most well regarded (amongst the mercury militia anyway) Yahoo groups.

The conversation began thusly:

From: Eva family
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:29 AM

the other thing that troubles me about all the “autism doctors” is that
no one seems to do any studies based on their patients. Some doctors
must have dozens of patients but there seems to be no published work
correlating their levels of minerals, reactions to diets, success of
treatments

…………

But in general J McC, Yasko etc, Buttar, the zeolite-people earn lots of
money and publish nothing except opinions………..followed by
anecdotal acclaim from those for whom they work and silent despair from
those for whom they don’t.

Being an experienced reader of the material on these groups, I silently commiserated with this poster as I waited for the inevitable flame fest. But it never happened. Here are some of th responses this post received from other ABMD members:

From: Laura K. Fischer
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 4:34 PM

Sally, this has always been a concern of mine also, I honestly don’t know whether some of these alternative doctors have any better of a percentage record in improvements then say some of the better mainstream neurologists prescribing meds or even in comparison to kids who only do therapy and educational intervention. Although I recognize that part of my skepticism probably stems from the fact that most of the kids I personally know who have done a lot of biomedical treatment (those in my local community) don’t seem to have improved any more rapidly than those who did not, there are a couple who are even worse off. There is no clear advantage that I have witnessed with my own eyes and it may be that it is because there is a tendency for many of these families to have used a couple of the same DAN doctors in this region, I recognize that this could be a contributor. But I do share your concern with this….Laura

From: Lawrence G. Leichtman, MD
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:40 PM

I have followed about 100 children with autism doing biomed. I have never seen a single “recovered” child if by recovered you mean normal though 8 of
the children were claimed to be recovered by their DAN doctors. I have wseen about 10-15% improved kids, some slightly and 10% of kids who were
actually worse from biomed. Of my patients using Yasko prescribed treatment alone I have seen 0 improvment out of 12 patients. I still don’t know what
works or why and this is after 10 years of doing this.

The response from Leichtman is a bombshell. If you do not recall the name, he is the doctor who was quoted in Dan Olmsted’s Age of Autism pieces as treating Amish kids (who never have autism – heh). According to his (anecdotal) opinion he has never seen a recovered child out of the 100 he has seen who have been doing biomed, even amongst those whose DAN! claimed they were recovered. Fascinating.

From: Gina Mouser
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 7:45 PM

We were seeing a very famous DAN dr. who told us that of all the 5000 plus
patients that the DAN doctor was treating, my son was the ONLY one that is
not improving.

Go figure..

Gina

This shed’s some light on the way DAN! quacks falsely inflate their patients parents with hope or a ‘convincing’ explanation. Except, judging by the tone of this email, this mum isn’t convinced.

One of the responders went on to question why Dr Leichtman was a member of the ABMD board if he didn’t believe in biomed. He reiterated his position and confirmed his belief that DAN! docs either lie or are mistaken:

I have seen positive results 10 to 15 percent is still better than 0. I just don’t believe in the total recovery claims as several of my patients were claimed to be recovered by their DAN doctors but they weren’t.

The original poster chimed back in later….

In the UK in education we have something called “value added” — this is the amount that a school has done for a child over and above what might have been expected by simple development. I would like to autistic children measured and placed at a point on a graph as they come into a
doctor (this is already done as I understand it) and then measured again after set periods. Over time that would set baselines and it would be
possible to see which doctors/treatments were giving “value added”.

I don’t understand why no one is doing this. Surely anyone genuinely “recovering” children would be all over us with data, analysis etc — so
that their achievements could be recognised, replicated and they (the doctor) could receive universal praise.

Quite. A point some of us have been making for quite some time.

Then of course, someone finally did play the PharmaShill card at Dr leichtman:

From: Marisha Taylor
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Tue, Aug 28, 2007 at 3:12 PM

I think the “confusion” is coming from you trying to turn the outcome of the study to what “you” want it to be. You & the pharmaceutical
guys would get along great -how much are they paying you on the side? Thank God you are having problems getting it published – there is no
more space for flawed studies.

The most fascinating thing about this post was the speed and weight of the responses telling her to shut up. Not what I would be expecting at all.

As part of the responses Dr Leichtman dropped his second bombshell:

I don’t even understand what you are asking. Neurotypical is average for a child their age not with sensory issues, not with hyperactivity, not with behavioral disorders. I do not include those that I really don’t believe nor does my neurodevelopmentalist believe has autism despite coming in with that diagnosis. *I see plenty of children who come in with the diagnosis who don’t have it in the first place* so improvement or not may not be valid for their issues.

This was unbelievable stuff. Straight ‘from the horses mouth’ was the seconding of the opinions that a lot of us had held for years. That some ‘recovered’ kids were never really truly autistic to begin with. I would love to know if Leichtman ever saw the Berle’s.

Anyway, as I mentioned, when Leichtman was accused of being a Big Pharma shill, the entire group sprang to his defense, including Holly Bortfield, a well known mercury mom.

From: Holly Bortfeld
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Cc: *******@aol.com
Date: Tue, Aug 28, 2007 at 3:24 PM

Wow, time to back off Marisha. Dr. L is a valued member of this list and you are out of line.

Bortfeld is a fascinating case. Later on in this discussion she says:

I know people who did only a few things and their kid is recovered and I know people who did EVERYTHING and their kid is still severe. While I do know some, they are very few in comparison, kids that are recovered. That sucks.

…………

I am thrilled for them, but my kid isn’t one of them (recovered) despite having the best of the DAN docs, virtually unlimited therapies and the “best” of everything, regardless of money, he’s still screwed up at 12 years old.

‘Screwed up’? Nice. This post was in response to the owner of the ABMD group’s post when she said:

I believe (and I’ am very cynical at this point) that most stories of “recovery” are the result of a misdiagnosis, or a mispresentation of
the facts for some financial gain.

Wow. Just….wow. These are incredible things for a ‘mercury militia’ group to be saying. If you only heard Gen Rescue etc you’d believe Brad’s oft-repeated claim of thousands of recovered kids. Its amazing to know that people of the same essential belief differ so wildly.

But back to Bortfeld’s screwed up non-recovered son. Her stance is peculiar given that, back in 2001, she was part of a discussion on the ABMD list during which she said:

Each time we deal with one of his medical problems, the features that gave him the autism label reduce. So in my mind, if we heal enough of his body, the autism dx won’t apply anymore. He went from severe (62 on the CARS) to mild (29 on the CARS) with diet and secretin. The last CARS they ran on him was a 22 so that technically doesn’t even qualify him for the autism label anymore (CARS is from 30-60) but I keep the label for services.

So which is true? That her son is ‘still screwed up’ and isn’t recovered? Or, back in 2001, that he doesn’t qualify for the autism label anymore? Interesting confirmation that Rescue Angels falsely hang on to diagnosis just to receive services as well.

I talked recently about denial. Is this discussion evidence of the rift in the mercury militia between those who have moved past most of their denial and those who can’t? Is it evidence that DAN! doctors know exactly how to play on the hopes and fears of these parents? I think so.

88 Responses to “The Myth of Recovery”

  1. Bink September 1, 2007 at 13:29 #

    It’s heartening to see people discussing this rationally. I am glad to see people who are willing to admit being mistaken. I try to teach both my children that everyone makes errors, but how one reacts to one’s errors shows one’s true character.

    The awful truth is that some DAN dokterz (stealing that from another poster) do in fact lie to and manipulate desperate parents. Having the ability to get a medical degree does not automatically make one a person of sterling character. Last spring our local ASA chapter had our local DAN person in to speak at a meeting. I did not attend. A friend called me soon afterward and asked me about a child I know well — let’s call him Bobby. She said the DAN person showed some pictures of Bobby, one from around age three where he was staring off distantly and looking sad, and one super-cute one taken when he was in kindergarten, where he is smiling and looking at the camera. The DAN person then said Bobby was “in a regular kindergarten” and “in the top reading group.” My friend who called also knows Bobby, and asked if she was mistaken about his general skill level and school placement. No — I know Bobby, and he is in a self-contained autism classroom. He still wears diapers. His IQ was recently tested at about 60. I care about Bobby and think he is a valuable and smart and cool kid, but to say he is “in a regular class” and “the top reading group?” Those are obvious misrepresentations, meant to try to drum up new business. Not that all the new parents in the audience who ooh-ed and ahh-ed know that, because sadly, there is always a new group of parents coming along who are new to all of this and want very much to believe that if they spent enough money or devote enough time to this “problem” then they can “fix” it somehow. It makes me sad, and angry.

  2. Jeanette September 1, 2007 at 14:16 #

    There is alot of misrepresentation out there. A local Autism group, whom shall remain nameless, uses one little boy in most of their publications as “recovered’. The mother claims this little boy is mainstreamed into regular classes. Funny thing, he attends a private school for Autism.
    My question is that if he is recovered, why is he attending a “specialized” and “segregated” school?
    Pretty “THOUGHTless”, if you know what I mean?
    Especially since this boys mother is the forefront of this local group.
    Jeanette

  3. Brian Deer September 1, 2007 at 14:49 #

    Maybe it’s a sign that the tide is turning: with some of these parents starting to say that they won’t be made to feel guilty anymore, either because their child is autistic, or because they, the parents, don’t spend enough money on quack remedies, heed the advice of the right charlatan, sufficiently shield their child from gluten proteins in the environment, or whatever.

    Last week, a very brave and honest mother gave evidence at Wakefield’s GMC hearing. Here’s her story in 1998:

    “M’s parents thought they had come to terms with the change in their son’s behaviour – which set in a few months after his fifth birthday – until a chance remark last year at an autism support group. ‘A mother asked me if he had received his MMR jab…’

    “‘In a way, making the connection was worse for us’, she says. ‘We’d convinced ourselves it was nothing we had done. Now we knew it was our fault.'”

    This poor woman has been through a decade of unconscionable misery. And what of the wretched lady who inflicted this upon her? Well, hey, she’s now operating a website.

    Phase 1: it’s YOUR fault your child’s autistic. Phase 2: send us money.

    But time’s are changing.

  4. Junior September 1, 2007 at 15:02 #

    Wow! This is amazing to me! I belonged to the abmd group for several years when my child was first diagnosed. At first the group seemed to be discussing the science of autism, then it became all vaccines all the time. Mercury/vaccine theory dissenters or questioners began to be attacked. I stopped reading abmd about the time that the autism immune group was formed. I am especially impressed by Leichtman’s comments.

  5. speechgrrl September 1, 2007 at 16:25 #

    This is a slight change of topic, but is there a site out there that’s following the Wakefield hearing?

  6. Brian Deer September 1, 2007 at 17:23 #

    Speechgrrl: no. Apart from the defendants, the panel of five, the five QC’s, ten juniors, plus solicitors and support staff, the only person who can claim to have followed the hearing is, err, well… yup.

    Occasionally, some shuffling baffoon will drift in, giggle idiotically, swap a curious “nanaa-nanaa-nanaa” droning noise with persons of like mind, slurp from a bottle or eat with their fingers before falling asleep and later leaving none the wiser.

    I’m tempted to say, “And that’s only the barristers”. But this would be unfair.

    In any event, I can assure you that anybody purporting to report the hearing is either trying to fool you, or is trying to fool themselves.

  7. Bink September 1, 2007 at 19:53 #

    Oh, I forgot to mention this — the DAN person I mentioned as drumming up business at the ASA meeting? This person has a number of children. A few months ago I was telling a friend of mine, who teaches at a local private school, about some of these biomed issues. My friend said Huh, funny, there are at least four kids with the DAN person’s surname enrolled at this private school. This 25 thousand dollar a year private school. So, that’s at least 100K a year. There is only one listing under this particular surname in the entire city/region phone book, so, though I have no proof of anything, I highly suspect that the mercury moms on the local email lists who write fervid paragraphs of praise for the Heroic Maverick DAN doctor, who say that we are so LUCKY to have this person in our community, and who swear that this person is barely even making any profit and is just doing this for the love of the CHILDREN….well, I think they are mistaken.

  8. Rich September 1, 2007 at 20:43 #

    I’m writing in reaction to the quotation within the blog (Eva family) who cannot understand why the DAN! doctors are not writing up their clinical results.

    Some parents I know, and many whose posts I’ve read on blogs and listserves, are incredibly frustrated by the entire medical and scientific establishment. This is because they believe there are studies so simple and logical that they cannot comprehend how it is they are not being done: e.g., a study of autism prevalence comparing vaccinated and unvaccinated children, or a study that reviews the charts of the DAN! doctors so that everyone can see for themselves how much recovery has taken place. If these studies were do-able, I believe they would be done. As for vaccination studies, to use one example, it is virtually impossible to find many unvaccinated children, and even harder to find children who are completely unvaccinated, or unvaccinated children for whom there are baseline data comparable to baseline data from controls. As for the other example, which we could call chart or retrospective reviews, anyone with a good knowledge of peer review in science or the history of peer review at the major research institutions, knows that retrospective studies are usually extremely expensive, of poor quality (ever look at a doctor’s charts?), with no good, comparable baselines, little standardization of treatment or monitoring (even within a particular practice) – not to mention the selection factor of which parents would allow their child’s records to be examined by an outside party. The option I think people ought to take is prospective studies, randomized, controlled studies, with comparable baselines, standardization, and all the rigorous requirements of peer review at the level of grant submission and publication. But this would take a long, long time and it is very expensive.

    When some parents read such arguments, they think it’s ridiculous and they just don’t trust science.

    So the way I see it, the frustration comes about because these hopeful families simultaneously have so much faith in science – they really think scientists are capable of doing the studies they imagine – and so little trust.

  9. kristina September 2, 2007 at 05:12 #

    When a parent makes a claim of “recovery” or “cure” from autism, of a child losing her or his autism diagnosis, the child tends to be rather young: 4 years old, even, or just starting kindergarten. The parents often attribute all progress to biomedical treatments, while giving education and the child getting older only a passing mention; the parents seem to have a false sense that, if only a child can get into kindergarten or first grade in a mainstream setting, all will be well.

    And then, if/when the child starts to have difficulties, some parents keep trying out other therapies and treatments (HBOT, Son-Rise…..one begins to suspect the list is infinite), and shedding therapies and treatments that “did not work.”

    A recent thread on a biomedical treatment listserv was on starting such treatments on older children. One parent made the assumption that older children are more “damaged,” on the theory (I suppose) that the longer a child has gone without chelation, heavy metal detoxification, and so forth, the longer all those “toxic” entities have “poisoned” the child’s body.

    What really “does not work” is to hold on so long to the notion/false hope of recovery.

  10. Rich September 2, 2007 at 13:33 #

    On the other hand, “recovery” is a definite possiblity when the child has been misdiagnosed in the first place. One wonders whether promiscuous diagnosis of autism at earlier and earlier ages results in “recovery” because autism was never the right diagnosis to begin with. Lots of non-autistic kids are developmentally delayed and catch up in elementary school. Of course, who knows what recovry means. My child attended a mainstream overnight summer camp this summer. Amazing. We are the proudest parents. But this doesn’t mean “recovery.” It means development and growth and learning — not just on the part of my child, but on the part of the larger community (including the camp) that is more and more able to understand and accommodate the needs of autistic children.

  11. Vandychick September 2, 2007 at 14:20 #

    I know of one child who has a very iffy diagnosis of autism. He was diagnosed early for getting services, not for complete accuracy and the mom knew that at the outset.

    However, over the past year, I have noticed that her story and her son’s symptomology keep morphing. At first she really seemed to question herself and the diagnosis. Nearly every mother on the board expressed extreme doubt as to the accuracy of the diagnosis. She even met an ABA therapist on the playground by chance who told her she needed to get her son reevaluated because the diagnosis seemed really inaccurate.

    Now she claims that her son is autistic “without a doubt” and that therapy has caused all of his progress. He was diagnosed early because his symptoms were so obvious, not because he couldn’t get ABA without an autism diagnosis. “He liked to look at us through his legs and laugh” changed to “he was stimming all day long.”

    Now every time a new mother comes to the board, she rushes to tell them about how her son has improved greatly through therapy though he was pretty severe before. I am sure that when he starts kindergarten she will market him as a major recovery story. I don’t know whether she is trying to convince herself or if she honestly just doesn’t remember what she has said in the past.

  12. Do'C September 2, 2007 at 22:38 #

    From the TACA Now website:

    Q: How long does it take to complete chelation ?

    Six months to two years, depending on how toxic a person is and how quickly you chelate. Children younger than 8 seem to respond more quickly than older children.

    Q: Has anyone actually “cured” their autistic child by chelating them?

    The book “Turning Lead Into Gold” describes several cases of children with “autistic tendencies” who improved dramatically after chelation for lead. As of this writing, no one on this list has completely cured their child from mercury poisoning. But it’s early yet. Dr. Amy is getting some wonderful results with the children in her practice, and numerous parents have reported improvements in their autistic children with each chelation cycle.

    Source

    The “recovered” kids should be arriving by the thousands any minute now.

  13. Joseph September 2, 2007 at 22:58 #

    Wow. That sounds pretty rational.

    Kev, I think you’re being too kind with Generation Rescue. The recovery rate of children whose parents associate with Generation Rescue is probably nowhere near 5% or 7%. You’re only counting number of claimed recoveries out of all *positive testimonials*, rather than all children involved.

  14. bones September 2, 2007 at 23:30 #

    Do’C-
    That’s pretty f’ing scary that TACA advertises chelation in that matter with such a straight face and no discernable results. Sad. Very sad.

  15. Do'C September 2, 2007 at 23:50 #

    I agree bones. It’s pathetic.

  16. Joseph September 3, 2007 at 00:59 #

    As of this writing, no one on this list has completely cured their child from mercury poisoning. But it’s early yet. Dr. Amy is getting some wonderful results with the children in her practice…

    That’s also in the Mercury-Autism FAQ. Last time I brought that up, I was yelled at by Best and his cronies. They said it’s an old statement and they just hadn’t updated it. They still must be too busy, you know, “recovering the kids”. Whatever happened to Dr. Amy’s practice, BTW, and the wonderful results? I think Dr. Amy herself had a head-on collision with reality.

  17. julia berle September 3, 2007 at 10:02 #

    Ms. Clark Says:
    September 2nd, 2007 at 03:27:17
    As I’ve noted before, if a parent decides that they are going to become a mercury mom or “biomed” activist/campaigner/militia member you can guarantee that their kid won’t get cured. It’s like the curse of the autism heros or something. Then there’s Julia Berle who was unknown on the autism boards, even in SoCal from what I hear, until suddenly she appears with a cured kid.

    Just cuz u didnt read my posts doesnt mean they dont exist
    3 or so years of them
    I can send them to you….

  18. julia berle September 3, 2007 at 10:08 #

    GOOD morning !!

  19. Kev September 3, 2007 at 11:57 #

    Morning Julia – so, did your family ever see Dr Liectman?

  20. Brian Deer September 3, 2007 at 16:15 #

    All reminds me of the stock market tipster scams. Scamster advertises on web. People send money. Since even the dumbest, crookedest or most self-deluded, tipster is right some of the time, those people who get lucky on scamster’s advice are brought forward in testimonials. The rest – the majority -go to the wall.

    Weather forecasting, astrology: make it all up, and you’ll often still get good results.

    So, since as we know, some kids catch up on their development, and would do if they are chelated, are injected with B12, or have a fried egg put on their head every Thursday night, these are brought forward as the charlatan testimonials for whatever “remedy” is on sale.

    Given the powers of suggestion afforded to the charlatans, often by their medical qualifications, persecution by the establishment, etc, very honest parents are bound to be available to attest to pretty much anything at all.

    Dem’s my views. Colonoscopy anyone?

  21. Kev September 3, 2007 at 19:06 #

    Joseph, you’re absolutely right but even being kind with GR’s figures, 5 – 7% is still pretty pathetic.

  22. Ms. Clark September 3, 2007 at 19:25 #

    Hi Julia,

    I had heard from a parent in your vicinity that before you came out with a cured child s/he had never heard of you, and this parent thought it was really odd since most of the autism parents were pretty familiar with each other. Which is not to say that you weren’t there doing biomed for a few years before you announced that Baxter was cured. Would you like to share which listserv or Yahoo! Group you were active on before Baxter was cured? I see you are pretty active on EoHam now. Did they ever figure out if Lujene Clark (no relation) said that Lyn Redwood has a big behind?

    I wonder why you used DDI lab to show Baxter’s heavy metal levels. Did you send a provoked sample to DDI? I think that’s a fair question since you have shown a copy of his DDI lab report to the public.

    I also wonder why you think it is that “recovered” kids are such a rarity especially among the leading lights of autism-as-thimerosal-poisoning and since so many of the quacks promise that 70, 80 or 90% of their patients will become normal or nearly so on their regimen. What about Holly’s son? Can you expalin how he was no longer qualifying for autism, but then still in need of recovery and “screwed up” years later?

    I wonder how many of the kids got screwed up by chelation?

  23. notmercury September 3, 2007 at 21:12 #

    But Jeff Bradstreet’s son is recovered, isn’t he?

    http://asa.confex.com/asa/2007/techprogram/S2918.HTM
    Dr. Bradstreet is the founder of the ICDRC in Florida and serves as the Director of Clinical Programs. His son, Matthew was diagnosed with autism at age 3, but is now fully included in mainstream school.

  24. Ms. Clark September 3, 2007 at 22:20 #

    I wonder if it was the secretin or the exorcism or the IVIG?
    Will Stephen Edelson go and document this boy’s cure?

  25. Broken Link September 4, 2007 at 02:29 #

    Well.

    According to this recent link about Bradstreet, “His 11-year old son, Matthew, is recovering from autism.” We all know what “recovering” means. It means not yet recovered, i.e. still autistic.

    But way back in February 2005, on ABMD, a person called sheryl_melling said rather huffily: “Is it just me or are people replying to this that haven’t read all
    of the posts. Hello people-his son was recovered and then regressed
    again after the kindergarten booster shots. He was being truthful
    both times so please read before you post. Why in the world are we
    still discussing Jeff Bradstreet’s credibility when he is an amazing
    doctor? The whole beginning discussion was simply a
    misunderstanding and that is all. Bill Walsh even says he is one of
    the top ten DAN doctors in the WORLD!!!”

    So, one of the top DAN doctors in the WORLD!!! has a son who recovered after the first MMR, but at age 11 is still not recovered, and the reason for this is . . . he had an MMR booster.

    Shucks. Even I don’t think he is a case of real recovery.

  26. Broken Link September 4, 2007 at 02:30 #

    I don’t think this is Julia posting. Julia would never say cuz.

  27. Broken Link September 4, 2007 at 02:36 #

    Just read this amazing post by the owner of ABMD. This made in 2005. It seems that skepticism was raging even at that time.

    _____

    This is a fascinating and bewildering community. Parents voice their outrage at not having been informed about all the toxins in vaccines, and point out the lack of research to support the efficacy of the current vaccine protocol. Many of the same parents that are shocked at the lack of scientific data for vaccines, are more than willing to let their children undergo alternative medical interventions for which there is no scientific data.

    Parents rake the mainstream medical community over the coals, and express their regret for having placed so much faith in their children’s pediatricians. They form non-profit organizations, and join forces to expose the lies, deceit and cover-ups performed by the FDA, CDC, etc. etc. etc. They claim that all they want is the TRUTH. But tell them the truth about their DAN! doctor, or a clinic they are taking their child to for biomedical interventions, and watch all hell break loose if it shakes their faith.

    Albert Einstein defined insanity as doing the same thing over and over, and expecting a different outcome. From where I sit, there is plenty of insanity in our community. If autism has not taught us to question our healthcare providers, (allopathic, naturopathic, homeopathic, and chiropractic alike) then I fear we have some very tragic lessons ahead of us.

    The discussion regarding Jeff Bradstreet’s son was started by a parent claiming Jeff’s son had recovered. First off, Jeff’s son’s recovery or lack thereof shouldn’t have anything to do with whether or not Jeff is a competent physician. I recall recently on the list when someone asked Steve if he was a “parent”, as if that had anything to do with his ability to have a rational or informed position on vaccines and autism. His reply was something clever, like “Hey, how about the price of those pork bellies?” In other words, what the hell difference does it make whether he is a parent of an ASD child or not?

    Parents seem to have a sense of false security about taking their child to a doctor who also has a child on the spectrum. I know better. My son’s pediatrician had a son the same age as mine, with autism, and he completely missed my son’s disease. Doctors are human. Having an autistic child does not determine whether a physician is a good doctor, or whether they have any superior ability to treat your child.

    It is entirely reasonable that Jeff’s credibilty has been affected by the roller coaster of claims regarding his son’s recovery. I have personally been present when Jeff has said his son was recovered, not recovering. I have been told by other physicians that his son was never recovered in their opinion, and that Jeff is no longer claiming his son is recovered. That is why I asked for clarification when I saw a parent posting to the list that Jeff’s son is recovered.

    Now, back to the truth. There are many times while reading this list that I think of the famous courtroom scene in “A Few Good Men” where Jack Nicholson is testifying and exclaims, “You can’t handle the truth!” A few years ago an individual claiming to have a Ph.D. was posing as a parent on various autism lists, promoting herself and her protocol. It was brought to light that she never graduated from high school and received her degrees from a diploma mill housed in a strip mall in Northern California. I also discovered that many DAN! members were aware that this woman was a fraud. I confronted a highly respected DAN! member and asked him why no one was bothering to expose this woman. His response was, “Parents are emotionally devastated by this kind of stuff. No one wants to see that.” Pam,summed it up quite well with, “Gotta be careful what you say and how you say it on these lists.People are placing a lot of faith in their practitioners and comments like those below just get the faithful riled up!”

    I’ve got nothing against faith, but for some reason I’ve always been more comfortable with truth. Whatever it takes, I hope we all find a way to heal our children.

    Ricci

  28. Ms. Clark September 4, 2007 at 05:26 #

    “It is entirely reasonable that Jeff’s credibilty has been affected by the roller coaster of claims regarding his son’s recovery. I have personally been present when Jeff has said his son was recovered, not recovering. I have been told by other physicians that his son was never recovered in their opinion, and that Jeff is no longer claiming his son is recovered. That is why I asked for clarification when I saw a parent posting to the list that Jeff’s son is recovered.”

    It looks like one could almost get whiplash trying to figure out if Bradstreet’s son was recovered this week.

    I have read that before and forgot about i. It’s so funny.

  29. Regan September 4, 2007 at 05:39 #

    Joseph said,
    “The recovery rate of children whose parents associate with Generation Rescue is probably nowhere near 5% or 7%. You’re only counting number of claimed recoveries out of all positive testimonials, rather than all children involved.”.

    Can someone remind me of the spontaneous recovery rate, even in the “pre-intervention” days under the DSM-III…isn’t it somewhere in that ballpark?

  30. Kev September 4, 2007 at 06:13 #

    Its Julia. IP address matches up.

  31. Joseph September 4, 2007 at 13:35 #

    Is that a pattern with the DANites, considering Jeff Bradstreet and Amy Holmes? I mean, is it common for their kids to first be recovered and then not recovered?

    Can someone remind me of the spontaneous recovery rate, even in the “pre-intervention” days under the DSM-III

    It’s generally thought to be 10% to 15%. If you look at outcome studies, there’s quite a bit of variation, but roughly they’ll report 10% have “very good outcome” and another 10% “good outcome”, with the rest having “fair or poor outcome”. Of course, “good outcome” means neurotypical-like.

  32. alyric September 4, 2007 at 14:22 #

    Hi

    Sort of interesting which way the wind is blowing these days and about time, eh. However, one point struck me. There seems to be some kind of assumption that ‘recovered’ kids may have gotten there because they weren’t really autistic in the first place. Hmm. How about the scenario that little johnny hasn’t shown any development because he was never autistic in the first place. They stuck the label there to give access to services, but the kinds of problems that may or may not co-exist with autism can prove difficult to remediate and the upshot is that ‘autism’ becomes connected to ‘no develoipment’ and so on. I have a real problem with that, though I suppose that there will be no answer to it until objective forms of diagnosis become available and are adhered to.

  33. IP Address says... September 4, 2007 at 17:06 #

    Just curious…

    Is Kev’s Bipolar Disorder a matter of over-diagnosis/better diagnosis?

  34. johndoe September 4, 2007 at 17:19 #

    On the subject of recovery, Yasko has created a new website with nothing but success stories. Of course links to her drugstore are included at the bottom…

  35. Kev September 4, 2007 at 17:54 #

    IP Address:

    Who knows? Do you think when I was diagnosed might play a part in the answer to your question?

  36. bones September 4, 2007 at 17:54 #

    “Is Kev’s Bipolar Disorder a matter of over-diagnosis/better diagnosis?”

    Perhaps, however, I don’t believe the same can be said for your ignorance. Luckily for you, it has yet to be a formalized pathology within the DSM. Try chelation…can’t hurt. Right?

  37. IP Address says... September 4, 2007 at 20:27 #

    “Who knows? Do you think when I was diagnosed might play a part in the answer to your question”?

    Nope. I don’t care when you were diagnosed. Perhaps you were the one in 10,000 (or whatever it was) who was diagnosed with Bipolar disorder years ago. Perhaps now they are completely over diagnosing this disorder. Perhaps the doctors are misdiagnosing thousands and thousands of children with this disorder. Perhaps thousands of thousands of children are being given drugs to treat their “bipolar disorder”. Perhaps these drugs are damaging our children in ways that we are yet to know… Perhaps. I guess it doesn’t matter. Oh, but yeah… God forbid someone goes to a DAN! doc… One word for many on this list — hypocritcal. Of course, in my opinion.

    Can someone forward me to an article by Brian Deer on his concerns about treating children with possibly unsafe treatments (backed by pharma/doctors) for “bipolar disorder”. Thanks in advance.

  38. Kev September 4, 2007 at 20:40 #

    IP Address – your overbearing tendency to go off topic at the drop of an opinion has already revealed who you are :o)

    _”Nope. I don’t care when you were diagnosed. “_

    Tut, tut, tut. That’s not what I asked. I didn’t ask if you cared when I was diagnosed, I asked if you thought when I was diagnosed would impact the answer to your first question.

    But please – do carry on moving off topic. However, as you do, realise that its blindingly obvious that if you were genuinely interested in manic depression you could move your questions to the right blog. What you are doing here is deflecting attention away from what makes you uncomfortable – the fact that ‘recovery’ from autism is a myth :o)

  39. IP Address says... September 4, 2007 at 20:45 #

    “What you are doing here is deflecting attention away from what makes you uncomfortable – the fact that ‘recovery’ from autism is a myth :o)”

    That doesn’t make me the least uncomfortable. That is up for parents/doctors to discuss… I have seen and know of many children whose health has improved after certain biomedical “treatments”… Symptoms diminishe, etc. That’s all that I need to know. My issue is whether or not vaccines can trigger certain bad outcomes/neurological damage/autoimmune diseases, etc… etc… That’s a resounding YES (of course). Have fun!

  40. Kev September 4, 2007 at 21:04 #

    It doesn’t make you the least uncomfortable and yet you leapt to defend just that part of my comment? Lol…the post on denial is still up for you to read ;o)

    Anyway, you’ve had your bit of fun IP Address, run along now.

  41. bones September 4, 2007 at 21:18 #

    “Can someone forward me to an article by Brian Deer on his concerns about treating children with possibly unsafe treatments (backed by pharma/doctors) for “bipolar disorder”. Thanks in advance.”

    If there were Pharm companies giving children unnecessary lumbar punctures, without approval from an ethics board, in an attempt to test an otherwise unsupported hypothesis – proposed by an attorney paying said Pharm company for said results- and showing up at their birthday parties offering $$$ for blood, I’m sure Mr. Deer would write about that.

    Of course, far be it for me to speak for anyone.

  42. Flo September 13, 2007 at 11:40 #

    Does anyone have any experience of Dr Natasha Campbell-McBride and her book ‘Gut and Psychology Syndrome’? I am following the diet (simple carbs only, no sugar, no dairy) with my son (Asperger’s and ADD) and am seeing some encouraging results.

  43. David N. Andrews M. Ed. (Distinction) September 14, 2007 at 03:28 #

    Saw a site about… dig this:

    Dr. Natasha Campbell-McBride and SCDâ„¢

    QUACK ALERT!

  44. Curt Worden - Filmmaker September 15, 2007 at 11:53 #

    When you follow several families efforts for a year and witness first hand behavioral improvements in young children it is difficult to deny the biomed recovery claims. To see and hear testimonials direct from mothers see the link in my name.

    (slightly edited for repititous link – Kev).

  45. Kev September 15, 2007 at 13:28 #

    Are any of them now not autistic Curt?

  46. notmercury September 15, 2007 at 17:37 #

    Oh Geez. Kenneth Bock? Is he even allowed to practice medicine now? Nice plug for the quack video brochure there Curt.

  47. Curt Worden - Filmmaker September 15, 2007 at 21:18 #

    No full recovery (whatever that really is) but various results that move them in the direction of becoming mainstream. Families celebrate any positive changes and to deny any of these people their claim to doing right by their children is unecessary.

    notmercury – Nice try spinning the Dr. Bock quack position. Say that to a mother and father whose child has been treated by him. It is easy to spit slander out of your keyboard, but you do it without any regard for the person whose goals are sincere and well intentioned. Oh ya… I suppose you think we had a gun at the heads of the people interviewed right out of camera sight, forcing them to say a scripted messaging. You see what you want to see and deny individuals their position.

  48. Kev September 15, 2007 at 22:04 #

    So no full recovery then? So according to you they’ve recovered, but not ‘fully recovered’? Is that right? I just want to understand your position.

    What sort of things are you talking about that evidence ‘moving in the direction of becoming mainstream’? What makes you attribute that movement to Biomed? What sort of biomed are we talking about?

    _”Oh ya… I suppose you think we had a gun at the heads of the people interviewed right out of camera sight, forcing them to say a scripted messaging”_

    Huh? Isn’t that just a tad silly?

    I suspect we (as parents of autistic kids) have been involved in this a lot longer than you Curt. I know people who claim – as you are that biomed is ‘recovering’ their child and yet they’re still described as low functioning and the facts are they’ve had their kids on a biomed regime for over 5 years.

    A lot of us are highly suspicious as we’ve seen nothing to allay our suspicions. What are you brining to the table to allay our suspicions?

    _”Families celebrate any positive changes and to deny any of these people their claim to doing right by their children is unecessary.”_

    Not a clue what you mean by that.

  49. notmercury September 15, 2007 at 23:09 #

    CWFM Said: “Oh ya… I suppose you think we had a gun at the heads of the people interviewed right out of camera sight, forcing them to say a scripted messaging”

    Well, no, I don’t suppose that all. I do think the DVD, you chose to promote on Kev’s blog, looks like a slick infomercial for the Rheinbeck ctr. but I suppose it may be a legitimate documentary.

    Out of curiosity, did you or your production company receive any sort of financial considerations from Mr. Bock or associates?

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  1. Who Knows Best?: Physicians and Patients, Mythology and History - September 1, 2007

    […] about why the vaccine-autism myth continues to endure and is still believed in (and Kevin at Left Brain/Right Brain has a post today on the myth of recovery). Dr. Michael Fitzpatrick, author of MMR and Autism: What […]

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