Autism extremists

28 Dec

There is a lot wrong with the UK in terms of provision for autistic people and education about what autism is to the mainstream. One of the things that isn’t quite right is the National Autistic Society. It’s numerous flaws include a lack of autistic people at policy making level.

But you know what? It knows this about itself and is trying to change. It is also a deeply responsible society. It carries a link to this PDF on its data pages. This article is a short ‘what is…’ guide that explains clearly what people should look for in a decent science paper and why these things are important. Peer review is discussed, as is the importance of publication in a respected journal. I strongly urge people to download this and pass it on to any parent or interested researcher. Its a great, non-technical, helpful and clear article.

By contrast, the US Autism Society of America (which is obviously in a battle with Autism Speaks as its strapline is ‘the voice of autism’) seems to have taken a step further down the road to quackery. In the latest issue of its ‘Advocate’ magazine, it included a number of interviews with such mercury militia stalwarts as Mady Hornig, JB Handley, Dan Olmsted and Martha Herbert. It also included a ‘how-to recover autistic children’ guide from ARI (home of the DAN! docs). Of note was the trumpeting of a new treatment option I hadn’t seen before:

Medical Marijuana to control aggression…

So if your autistic child is acting up, give ’em an illegal Class C narcotic….is this really the periodical of the most mainstream autism organisation in the USA? Giving space to people who want to push illegal drugs to kids?

I’m not going to pretend I’ve made it through 37 years of life without imbibing the odd narcotic but I was an adult, making my own informed choices. These people are trying to suggest that its OK to give these things to kids. Incredible.

I’ve discovered some of the most informed, considerate and knowledgeable people in the US. I’ve also discovered some of the most frightening, genuinely ignorant (and desirous of that state) people in the US.

Every now and then I can’t hold back from posting to web forums that discuss autism. I did that just before Christmas at a web forum that I’ve now stopped posting at again – it reaches such a fever pitch of idiocy that you think ‘what’s the point?’ And of course, people mail me every so often to point out something dumber than usual that that poster boy for assholery John Best has posted. I stopped reading John’s blog awhile ago for the same reason – the people who post there aren’t interested in debate or enlightenment. They desire their state of ignorance. Well, a quick toke on what DAN! promote those days should help with that!

But anyway, a quick example of one of the more extreme people who post at both these places (I didn’t know until today that this person posts at John’s blog but it wasn’t a surprise) is a poster called ‘dgdavies’ – real name Diane. I find her utterly fascinating and repulsive at the same time.

I found out via her that there is a conspiracy to somehow tie in the vaccine/autism hypothesis to the 11/9 WTC terrorism (which, by the way, was orchestrated by an internal agency according to her). She was, understandably, not clear on the details but she was adamant.

I found out via her that the vaccine/autism hypothesis could well be an Illuminati plot as suggested by FAIR Autism Media wacko David Ayoub.

Her latest fascinating conspiracy theory is that (and this truly is an awe inspiring piece of self delusion) is that the diagnostic criteria for autism was widened at the last DSM revision _in order to ‘hide’ the mercury poisoned hordes_ .

I hear tell, that like John Best himself, Diane doesn’t believe in evolution.

Is this the legacy of Bernie Rimland? A bunch of whacked out stoners swapping addled stories? Pass the hash pipe dude.

There’s also the small matter of at least one ARI DAN doctor being a paedophile, another being very closely associated with a convicted paedophile, DAN doctors belonging to cults like Scientology and, of course, the DAN! hierarchy happy to accept killers. These aren’t conspiracy theories. These are established facts. Why have these people been given any time at all in a supposed mainstream autism publication?

40 Responses to “Autism extremists”

  1. Rose December 28, 2006 at 14:45 #

    Hey, I was once a member of that crowd!

    I left when I accepted Ben unconditionally and quit trying to be a hero in my own mind…strange, I wonder how many others fell away in a similar way.

  2. Joseph December 28, 2006 at 15:56 #

    Evolution is simply a change in the frequency of alleles over time. If someone wants to believe the frequency of alleles never changes, they are seriously deluding themselves. In this sense, evolution is a ‘fact’.

    Evolution also refers to the scientific theory that explains how all the different species we see on planet earth today came to be. The theory involves natural selection, genetic drift, balanced selection and so forth. There is no doubt that these mechanisms work. Speciation has been observed in nature and in the lab. There’s evidence from the fossil record, from genome comparisons, and so forth. When people speak of the ‘theory’ of evolution, they are referring to the scientific meaning of ‘theory’, not the layperson term, which is interchangeable with ‘hypothesis’.

  3. clone3g December 28, 2006 at 16:39 #

    Dude, Awesome Narcotics! Don’t Assume Negligence, Deliberate Acts Notwithstanding.

    Doubt Ayoub? Never! David Appreciates Nanstiel.

    Degrees Aren’t Necessary, Daddy’s Almost Nobility.

    Dashing Andy’s Nucleocapsid — Darling Autism’s Narcissist.

  4. Friend in California December 28, 2006 at 16:58 #

    The same thing happened to me, Rose. And I couldn’t be happier. For all those “success” stories (where success=cure) touted by the biomed camp, I have heard an equal number coming from all other angles (where success=happy child). I think they many times overlook the point that children grow, mature, and progress in so many ways, regardless of their neurological makeup. Just as the “timing” of the vaccines, in my opinion, led to the whole “link” concept, I think the “timing” of biomed therapies as relates to periods of natural growth and development in children leads to the conclusion that cures result from things like chelation and Lupron.
    And all of the rhetoric about how devastating Autism is to a family as well as the individual puts many parents in the position of feeling like they have to be a hero – that heroic steps are called for. My current definition of being a heroic dad to my sons – one who is autistic and one who is not – encompasses things as simple as: sitting down to read them a story, playing with Play-doh on the floor with them instead if watching football, stopping on the way home from work to get them a new matchbox car as a surprise, teaching them table manners, setting up obstacle courses in the back yard to challenge them. And, with my autistic son, it also means speech therapy, OT, modified ABA, etc.
    I am not implying here that all parents who do extreme biomed do not do these things, I just think that, outside of treating co-morbid conditions, none of the extreme biomed treatments are in any way beneficial to autistic individuals. Let’s keep the ND thing moving forward so that we can help other parents redefine what “heroic” means to them, too.

  5. Acronymph December 28, 2006 at 17:05 #

    So NAA, DAN!, ARI and ASA are A-OK with THC RX for ASD no 4-1-1 from FDA or DEA? WTF?

    Expect some CYA like the PA ENT when Na EDTA left PT DOA.

  6. Friend in California December 28, 2006 at 17:11 #

    Nice work, Clone3g. I love the acrimonious acronyms and awesome alliterations. Perhaps some perpetually pronouncable, profoundly plausible palindromes would be … perfect.

  7. Mike December 28, 2006 at 18:07 #

    Friend in California, your definition of hero is right on the mark. I see it in many fathers and even more mothers. I view it as unconditional love.

    The few who feel shame at the sight of their children may be very vocal, but we need to remember they are the ones who are defective.

  8. Ms Clark December 28, 2006 at 20:13 #

    I thought it was strange that uber guru Martha (Gaia loves me) Herbert said that marijuana had some really bad effect on minors when she spoke at the MIND’s mini-DAN! I have to go try to dig up what it was she said, but it was that some new research showed something awful as an outcome of childhood exposure to marijuana.

    She didn’t link it to Bernie becoming some kind of dope-pusher-in-absentia, but maybe she was trying to preempt one of the other groovy speakers at the conference from promoting it as THE NEXT BIG THING.

    These parents have screaming fits about how Thimerosal didn’t have lots of safety testing back in 1930, and that it got grandfathered in to acceptance by the FDA as usable in the states. They have screaming fits about how this or that drug or vaccine hasn’t been tested fully, but do they scream about what all could be in a bag of pot? Marinol is a prescription drug that can’t get a person stoned, as I understand it, it’s one particular molecule found in marijuana, of the mixture of possibly medically beneficial and possibly harmful chemicals in marijuana.

    Has Marinol been tested in autistic kids? We know scientists dosed autistic kids with LSD back in the 1960’s (there are papers about it on Neurodiversity.com) Has anyone done random assignment, placebo controlled, double blind studies on random bags of marijuana bought on the street for autistic kids?

    ASA is totally irrepsonsible for promoting this garbage.

  9. Anne December 28, 2006 at 21:30 #

    Dude. The doobie protocol is old news.

  10. livsparents December 28, 2006 at 23:10 #

    Kev, to answer your one question, ASA is positioning itself to where the MONEY is going with the autism act recently passed in the states.

    Friend in CA: I’m glad you put the comorbid comment and biomed parents doing ‘traditional’ therapies as well. SOME of us biomed ‘whackos’ parents beleive that both can peacefully coexist and that part of our childrens’ problems relate to the physical issues that their bodies are going through.
    Biomed’s not a cure, but a treatment for issues being overlooked by the mainstream because of the bad press the anti-biomed and the protectionist pharma generate. Most of it is justified, mind you, but it still winds up burying the legitimate physical issues our children have and the legitimate treatments they may need.
    Get mainstream to accept and treat these legitimate issues and maybe you can put some of the ‘snake oil salesmen’ out of business.

    Still basking in the idiocy of ignorance…
    Bill

  11. notmercury December 29, 2006 at 00:10 #

    livsparents said: Most of it is justified, mind you, but it still winds up burying the legitimate physical issues our children have and the legitimate treatments they may need.

    Can you provide an example of these physical issues and the legitimate treatments they may need?

  12. Kev December 29, 2006 at 00:14 #

    _”SOME of us biomed ‘whackos’ parents beleive that both can peacefully coexist”_

    …as do some of us ND whacko’s Bill. That’s not the issue I’m raising here.

    I know intellectually why ASA might be following the money but thats a totally crap way of operating. ASA needs to follow the science. Giving space to hardcore dangers like DAN! is not a good way to go.

    Anne – I had to consult my US slang translator to figure out what ‘Doobie’ was ;o)

    Friend in Cali – Nice comment, and thanks for the you-know-what ;o)

  13. livsparents December 29, 2006 at 03:35 #

    Duuuude! how’d you think the “Brothers” got their NAME!

    Not mercury:
    My daughter HAD reflux soon after her diagnosis.
    My pediatric gastroenterologist (after smuggly informing my wife that dairy meant MORE that just milk) implied that my daughter’s vomiting was probably due to stimming, and that her diarrhea was probably due to too much juice.
    A pediatric neurologist who did not know that gastric issues were a comorbid for some autistic subgroups (note, the same guy told us to get our daughter as many hours of discreet trial ABA as she could handle)
    A pediatrician that told us to wait a few months to see if she’d ‘grow out’ of her autistic symptoms.
    Another pediatrician saying that she could not have reflux because she did not have it as a baby and besides, she would be telling you she was in discomfort. When we reminded him that she was non verbal and mostly non communicative he said “she would have told you somehow that she was in discomfort”. His advise? Give her Tums…no reference to a gastroenterologist.
    Diarrhea, reflux were prescribed with the standard pharm du jour; we bounced from stool softeners to stool hardeners.

    Now that she has a healthier digestive system, she is happier and better able to concentrate. I take the yeast, virus, measles ‘gut cures’ with a grain of salt, but certainly can’t discount the possibility that these COULD help as well.

    I attribute much of the disservice I received from those ‘professionals’ not only from ignorance but also from a smear campaign brought on as a backlash to the Wakefield MMR accusations. A Pharma-funded scientific lynching of a theory which resulted in an over sensitization to the words ‘gut issues’ and ‘autism’ being used in the same sentence…

  14. Friend in California December 29, 2006 at 06:11 #

    Livsparents –
    On Christmas Day, we had over some new friends that we have recently struck up a relationship with. This marked our third get-together, and once again a good time was had by all.
    They are what I would consider “extreme” biomed parents. They have worked with ARI. They have put their child on GFCF – stopped because it did not work. They love their child openly and honestly. They have put their child on the Transdermal chelation protocol, which continues. The father takes him golfing to expose him to new activities – at sunrise(!) so he can get back home at a decent hour to help his wife with the other two little kids. They do regular IVIg treatments. The Mom never has anything but encouraging words for him.

    The reason I am interspersing comments here that would typically be attributed to one “camp” or the other is to illustrate the point that, to these parents, all of these things are natural responses they have to their child, and all are done in a loving spirit. This boy is accepted unconditionally by his family and, I think, has as good a chance as anyone in this world to achieve his marvelous potential because of his parents dedication to the task. Do I disagree with them on some of their approaches? Absolutely, and they know it because we have openly and non-confrontationally discussed it. Do I fear unanticipated effects of some of these treatments? You betcha. But, bottom line is, they are very, very nice and good people, and they are my friends, and they are doing that which, in their world view, is the right thing.
    Now, these are not representative of “biomed” parents in general – they just are who they are. These certainly are not EOHarm types – and you do not sound so either. My point goes back to one of Kev’s earlier posts – that “Biomed is a Spectrum” like anything else, and we have an obligation to our kids to follow the science and keep risks as low as humanly possible. But, the definition of risk – and even science – will vary from parent to parent. This does not excuse irrational or irresponsible behavior, but it serves to cast a different light on the debate.
    I have many times seen Kevin (and other good people) lambasted on various websites and Yahoo groups. Anyone who takes this stance clearly has not taken the time (or is patently incapable) to think through the point that Kevin (and NotMercury, Autism Diva, Kathleen Seidel, et al.) and the whole ND movement is pushing – that it is not the autism that matters, it is the loving support, acceptance of the individual, and expectation of goodness that overrides all else. How the hell is anyone supposed to succeed in life – autistic or otherwise – without these prerequisites?

    Note to Kev – Thanks for providing this forum. I can’t tell you how much I appreciate it.

  15. notmercury December 29, 2006 at 14:38 #

    livsparents said: “I attribute much of the disservice I received from those ‘professionals’ not only from ignorance but also from a smear campaign brought on as a backlash to the Wakefield MMR accusations. A Pharma-funded scientific lynching of a theory which resulted in an over sensitization to the words ‘gut issues’ and ‘autism’ being used in the same sentence…

    I understand your resentment but I don’t agree the ‘professionals’ are to blame. In fact I think the Wakefield/MMR debacle is a perfect example of a situation where premature conclusions and media driven hysteria end up causing more damage in the end.

    I don’t disagree that many ASD kids suffer from GI issues, mine included, but how are we ever to determine if this is an integral part of autism, a common co-symptom, or completely unrelated problem, when the issue is mired in controversy precipitated by poor science and scientists.

    It doesn’t have to be a “Pharma-funded scientific lynching” when parents and autistic people alike deserve the truth. If the connection between MMR and autism was real, if Wakefield et al truly recovered measles virus from the guts of autistic children, no “Pharma-funded scientific lynching” could suppress the truth once it was replicated by independent teams.

    So maybe you are OK with the whole thimerosal, measles, vaccine, DAN!, alternative medicine thing but try to keep in mind that false truths only delay real truth.

    “Get mainstream to accept and treat these legitimate issues and maybe you can put some of the ‘snake oil salesmen’ out of business.

    I doubt it. There are many diseases and disorders that “mainstream” medicine understands pretty well, some with a pretty high cure rate, but no shortage of patients willing to fork over vast sums of money for bizarre and often dangerous treatments.

    I’m sorry you see this as an ‘us and them’ conflict when the reality is that pharmaceutical companies and alternative medicine both are anxious to profit from our children. Before I part with my hard earned money – more importantly – before I expose my children to any substance there better be some damn good evidence to justify my decision. Something more than some underqualified doctor claiming 90% clinical response rates.

  16. Joseph December 29, 2006 at 15:35 #

    A pediatric neurologist who did not know that gastric issues were a comorbid for some autistic subgroups

    The thing is that it’s not known that gastric issues are comorbid with any sub-types of autism. There are conflicting study results on the matter. The correlation of stress and gastrointestinal disorders is more clear, however, so there might be something if you look at it from that perspective.

  17. María Luján December 29, 2006 at 17:16 #

    Hi Friend in California

    Thank you for your post. In honor to the truth, I do think that there are several aspects that many times are not considered enough carefully in this “debate”.
    I understand what you say and I agree wholeheartdly about our responsibility as parents by our children´s health. In fact, for me , these aspects has been the core of my personal involvement in the autism research reading and analysis, including from other fields than autism itself. Bill, you do not know how much I understand all what you say about your personal experience. Mine was the same- and worse.
    I know many parents in my country with autistic children Most of them are extremely dedicated and love profoundly their children. I can´t find one parent who do not love his/her autistic child and even is extremely worried about the future. Some of them have also become extremely involved about reading and research on medical problems concomitant to the autism diagnosis that no doctor seems to be interested/care/ commit to take seriously, at first. Obviously, when you bring them the clinical analysis you get done after looking doctor after doctor to make them done, they can not believe. And less when the clinical analysis once and again say the same. In the case of my son, related to many many many medical conditions. And noblesse obligue, there are exceptions in mainstreamed medicine in my city that have been really concerned and committed with us in my son´s health improvement- 2 to be exact.
    And I reach the point I wanted to present. I have told many times. DAN! Movement, beyond tests/treatments promoted by many doctors involved, have presented for first time several biochemical/metabolic aspects to consider that no one before considered enough to take into account. What was helpful for me was from the literature especially from Dr Baker and Drs Pangborn- was WHAT TO SEARCH- and they were not the only ones. Personal research in pubmed and works of Dr Woods, Zalups and many others ( not even known in autism field) have been extremely helpful to me with my son. How to search, with what doctor, with what test, where-lab-, and what to do next was a totally different world. I agree with many ND parents that there are potential dangerous treatments and not serious tests used- under my personal analysis and opinion- BUT this is different to say that ALL DAN! IDEAS are useless and ALL DAN! Doctors are criminals and ALL DAN! Related Scientist are bad and ALL parents doing biomedical are like MR Best and so on. I disagree with this, even when I agree with almost everything that has been discussed by ND parents about the published science and the practice of Dr Geiers, the aspects of the practice/ideas/treatments of Dr Buttar, etc.
    Even if some doctor/s present aspects that are not good/scientific/etc, I consider from the ideas I read the serious ones and discard what is not serious/ethics because I am interested about what can help to my son. And I consider the published work of several researchers such as Dr Herbert very important and sound, especially because of the clinical analysis of my son.You can disagree with me, but this does not change the things for me and my son´s particular case.
    What I consider important is what is published and the analysis of; what is serious and what is not, what is well and scientifically done and what is not, NOT the personal aspects when published science in peer-reviewed journals is analyzed. I analyze the science under scientific parameters; I evaluate the person from partial knowledge many times and I analyze the credibility in terms of ethics but some of the ideas can be excellent and helpful, even if the person has aspects in his/her private life that you do not share-even if you strongly disagree or do not like how the ideas are used to create treatments “for autism” -??- based only in personal beliefs ( and this is a totally different world). The same idea can be checked in a serious lab and after this another totally different path to be selected than the one proposed by the doctor presenting the idea, depending on the results.
    What I disagree many times is in the tone/generalization/ that many ND parents/defenders have when they talk about certain beliefs of certain parents. Words like “idiocy” , “stupid” “irrational” and so on do not help much. I am not an idiot ( I think ). I am extremely interested on science and I research every day about autism. I do not share ideas with Mr Best or many others. I do not believe in conspiracies and so on. I am not identified by nothing about what is written about in ND blogs about some biomed parents.

    About what happens in terms of debate, I do not know who are worse attacking/defending, especially when the things are downhill. They do not stop in the bottom of the hill, they go subaquatic getting personal. They, many, from the both camps. ..and I have no problem to say that I appreciate the people in ND camp I really do, even when I have disagreed strongly and I have supported some very non- nice comments. Words like genocide, eugenics and extermination of autistic people do not exist in my mind, my soul and never existed. And for the parents I know, neither. To present as example only the most extreme positions do not help , simply, because many many many parents doing biomed are far far away from these positions (and in parallel). And it is counterproductive for the people-parents of recently diagnosed children for example- who is by first time in contact with ND blogs.

    There are parallel roads. Many of us doing biomed and discussing the biomed we are doing ( the ethics, the safety, the efficiency, the science, the need of more research, the clinical analysis of our autistic children done in serious lab) by one road and the debate between Autism=Hg poisoning and Autism= another way of being and genetics where I ( at least) do not fit in anywhere between because we are (I am) not in the middle with no rules; it is a completely different world from the theories to the treatments to the philosophy of science to everything.And therefore there is no space to get into the discussion for me in these terms such as it is. Obviously this does not imply that someone must be interested about what I think. It is the state of the things, at least for me.

    AND I have friends in the moderate biomedical camp I appreciate a lot.
    BUT I separate the people of the ideas, at least the most I can. And because I am sure about my feelings to my son, my love to him, and the need of the treatments I am doing- because I have researched and consulted with many researchers and doctors around the world, looking at his case, not the epi/proven things but his clinical analysis- I can feel frustated because of the lack of understanding- and sometimes of interest although surely I accept this- from ND defenders, but I have tried to not take it personal as much as I could and to give the same consideration I consider I deserve.

    You say
    it is the loving support, acceptance of the individual, and expectation of goodness that overrides all else. How the hell is anyone supposed to succeed in life autistic or otherwise without these prerequisites?

    And you are right. But an autistic child like mine, with many many medical conditions to treat, neither was going to suceed in life without these conditions treated properly ( and every doctor agreed with me after reading his clinical analysis changes and results last 3 years). Beyond CAUSES /CURES, words that at this point I consider are the core of the problem because of the consequences that have in terms of policies of research and discussion, I focus on my son´s life quality as autistic. It would be nice to know EXACTLY the causes but I am interested on the treatment of the medical conditions he has, that are not going to be a CURE of his autism, although I hope can heal the specific medical conditions he has to become a healthier autistic child. And I must say that the best gift I have received of our struggle has been his happiness today when I compare with his mood and general situation 3 years ago.

  18. Joseph December 29, 2006 at 18:00 #

    BUT this is different to say that ALL DAN! IDEAS are useless and ALL DAN! Doctors are criminals and ALL DAN! Related Scientist are bad and ALL parents doing biomedical are like MR Best and so on.

    Who has made these generalizations, María?

    I would say, though, that all DAN! ideas have been nearly useless so far. There’s no good reason to think otherwise.

  19. Ms Clark December 29, 2006 at 20:47 #

    The big problem with any decent doctors who MIGHT be associated with DAN! and the DAN! philosophy is that the majority of what DAN! promotes is utter garbage and dangerous, and the better doctors who are signed up as DAN! doctors are too dumb or too gutless to challenge what’s going on in with the majority of the DAN! treatments.

    Why didn’t any of the DAN! doctors have a screaming fit when the Geiers came forward with the “Lupron protocol”? Why did it have to be Kathleen Seidel to call them to account? Where are the precious Neubrander boys on this one? Why didn’t the good DAN! docs (if there are some) resign when Abubakar died and Bernie babes only reaction was, “Kerry’s not a DAN! doctor,” if not then, then why haven’t they left the DAN! list when Kerry was added (a few months after killing Abubakar)?

    DAN! is a corrupt organization, in my opinion. Corrupt at the core, but still manages to give some good advice. So what if they do? I hear that mafiosi frequently support charities like children’s hospitals. Of course any bunch of doctors is likely to be doing SOME good.

    DAN! has done so much harm. No one should feel obligated to be a DAN! doctor in order to do good. In fact the organization tends to attract doctors and non-doctors with troubled pasts, people who say things like “The medical board only went after my license because they knew my intervenous hydrogen peroxide therapy was WORKING MIRACLES!!”

    Bernie Rimland’s big vitamin B6 and magnesium cures autism harmed at least one kid, I think more, who developed nerve damage from overdoses of B6. Miriam Jang nearly killed a little 3 year old boy with too much vitamin A and does she get booted out of DAN!?? NO.

    She’s promoting “magnetic clay baths” does she get booted out of DAN!? NO.

    Lynn Mielke goes on TV and says that mercury is the second most toxic substance on earth. Which is patently stupid. Does she get kicked out of DAN!? NO.

    Why not?? Because they have NO standards. The convicted child molester Schwartz is still a DAN! doc in good standing, the last time I checked.

    Are all DAN! docs this bad? No, but the rest of them are too gutless to leave this bunch in the dust, or too gutless to demand that the organization move beyond voodoo and reliance on quackery and oft repeated anecdotes.

    Bernie Rimand gave “Theresa Binstock PhD” a few thousand dollars to do research, according to DAN!’s tax forms. One little problem, Binstock never got past a bachelor’s degree. How’s that for a quality organization?

    Is there corruption in “Big Pharma”? Sure, but it’s no worse that what’s going on in “alternative medicine” They are just using slightly different kinds of sleight of hand and producing slightly different kinds of dead people and ripped-off people.

  20. HN December 30, 2006 at 02:39 #

    Also don’t forget that Roy Kerry, the quack who killed a kid with chelation is now listed as a DAN! doctor:
    http://www.autismwebsite.com/ari-lists/danus.html

    Talk about absolutely low standards!

  21. livsparents December 30, 2006 at 03:08 #

    As I said, since mainstream is providing NO support for the comorbids of the autistic children, WHOEVER provides a more holistic approach will be welcomed with opened arms. Until big pharma spends as much time and money finding ways to help autistic children instead of making money off them or protecting their own assets, they are far more dangerous than a disorganized group of doctors no more good or bad than any other small group of physicians pointed at a disorder abandoned by mainstream medicine. Many will be dedicated, some will be profiteering; a few will be downright vile. Comparing them to pharma is like comparing Enron executives to car salesmen…

  22. Friend in California December 30, 2006 at 04:27 #

    But, Livsparents, there is still a foundational belief coming through in your posts here which I believe is mistaken. That is, that the comorbids require handling by an autism specialist, especially one who places the holy grail of “cure” out there in front of frightened parents.

    Look, it has been stated that many autistic children suffer from “gut issues”. There are fields of medicine geared towards this – I am no medical specialist but I think gastroenterologists and internists fill that role. How has the medical field “abandoned” treating comorbid conditions when there are platoons of specialists that a person can see who can treat a comorbid condition? With full insurance coverage in most cases to boot!

    And as far as Pharma is concerned, lets take a moment to acknowledge the good they do in the world before we lump them in with Enron executives. They provide the substances, but it is the DAN! doctors and their ilk who push its off-label usage. Lupron was marketed for a reason – I believe it was to treat problems related to precocious puberty. It was NOT designed to treat autism! It took a profiteering quack to convert it into a “miracle” cure. Now, there are lots of drugs that find their way to off-label uses with success (example: Clinical trials showed that the anti-depressant Wellbutrin – surprise! – seems to curb nicotine urges, and therefore it has turned into a stop-smoking drug), but there is a defined process these drugs go through to be converted as such. I have a very close friend who has spent the last 13 years managing a firm that performs clinical trials for new pharmaceutical applications. Her department is the one that put the final stamp of approval on Viagra, for example (no jokes please). By her descriptions, you may be amazed at how rigorous these trials are, and how long it takes to bring a drug to market, and how much red tape exists to prevent errors. I have run the whole “conspiracy” concept by her and she scoffs at the concept – she feels it would take willful, comprehensive collusion of literally thousands of people working in private firms and government agencies to pull something ike that off, and the whole structure would collapse if even one person “turned”. The concept is beyond belief!

    Back to point, the huge problem with the DAN! approach is that they promise recovery (read: cure) – just look at the ad Kev links to in this post, and it is written right there. And there is no cure for autism. And if there were, if some treatment or substance were devised that could cause maybe 30% of autistics who were exposed to it to no longer be Dx’able (lets use that as a working defintion of “cure”), then there is plenty of room for doubt that this would be a desirable outcome for those who are diagnosed with autism. Just look through many of the posts on Autism Hub and you will see that there is a strong tide towards NOT wanting a “cure”, should one exist.
    So, let’s be honest – DAN! is not positioning itself to treat comorbid conditions – by their own words – they are selling a cure. And that, my friend, is wrong, wrong, wrong. I think it is important that you digest this point when considering how you feel about DAN!

  23. Friend in California December 30, 2006 at 04:33 #

    Let’s be honest though, Livsparents – DAN! is not positioning itself to assuage comorbidities. It says RIGHT THERE on the ad linked in Kev’s post that these treatments are to “recover” your child. You are barking up the wrong tree here – it is DAN! that is ignoring comorbidities, not mainstream medicine.

  24. NIHilism? December 30, 2006 at 05:31 #

    So you take your kid to see Sue Swedo at the NIMH who *will tell your kid that he’s not wanted as is*. He’s too autistic. He’s autistic when he’s not supposed to be, and they want to chelate him or her to make him a more acceptable, better human.

    “Minor Patient Assent: Chelation for Autism

    You may have questions about why you are here and what you are being asked to do. maybe some of the questions are like these:

    Why are you doing this research study?

    You are being invited to take part in this study because you have autism. DMSA is a drug that helps get rid of certain metals in your body, *including metals that can be bad for you, like mercury*. The NIH doctors don’t know whether or not DMSA will help you, because *they don’t know if removing mercury is helpful to people with autism*. Because it may take a long time to see whether or not the DMSA works, the study will last for about one year.

    What would I have to do if I decide to be part of the study?

    For the first month you will just take a vitamin pill once each day. This is to make sure that you have the right minerals in your body before we start. You will keep taking the vitamin the whole time. For the next three months, you will take the study pills. This could be either real DMSA or a placebo pill. Placebos are “fake medicine” or sugar pills that don’t help you, or hurt you. The placebo pills look just like the DMSA pills so that you, your parents, and the NIH doctors won’t know if your getting real DMSA or not. This helps the NIH doctors decide if DMSA is really useful for autism, or your symptoms would get better on their own. Because of how DMSA works, you don’t have to take these study pills every single day like most medicines. Instead, you will take them three times a day, for three days every two weeks (14 days). The other 11 days you take your vitamin. We will remind you and your parents which days to take the study pills.

    You will come in to the clinic for a check-up once every month or so. During those check-ups, you will answer questions about how you’re feeling and you will have a blood test. The check-ups will help the NIH doctors find out if you’re getting better, and also make sure that you’re not having any problems with the study pills. We will use some numbing cream on your arm before the blood test, so that the needle-stick shouldn’t be too uncomfortable. If it does hurt, it only lasts for a few seconds. You will be asked to give us a urine sample (that is, pee in a cup). This will be done in a private bathroom. You will also be asked to give some of your stool (poop). This can be done when you go to the bathroom at home before you come to the clinic. We give you a special container and your parents can bring it in with you.

    *We will also ask you to help us learn more about your symptoms of autism*. You will have to answer a lot of questions and fill out some questionnaires. You will do this three times – before you start the study, when you finish taking the study medicine, and once more when you come back at the end of the study. The questionnaires and inteview may become boring; if so, you can skip the boring questions or stop any time.

    ….”

    “If you have any problems or questions about this study, or about your rights as a research participant, or about any research-related injury, contact Principal Investigator Susan Swedo, MD, Building 10, Room4N208, Telephone (301)——–”

    No pressure there for all the kids to figure out what they’ve been doing wrong all this time and try to change it as far as mom and dad can report and to change how they act in the presence of the investigators. Sounds like a blast if you’re into humiliation and shaming!

  25. María Luján December 30, 2006 at 08:19 #

    Hi
    About mainstreamed doctors treating comorbilities in autism, unfortunately not in my country (and I consulted near 50). They do not know even what to search.
    If you have a diagnosis of Autism I was told once and again “nothing to test”

  26. Broken Link December 30, 2006 at 12:47 #

    Pharmacoligicator has an excellent point about how mainstream doctors should be used to treat gut problems. I have no doubt that many parents have heard something like “his gut problems are just due to his limited diet, and that is due to his autism,” from their family doctor. If a child does have gut problems he/she needs treatment from a specialist in this field. The problem with DAN! is that their approach to gut problems is based to a disproven theory (leaky gut/opioid peptides). While putting a child on a GFCF diet may not be a bad thing, it is not necessarily the cure for every gut problem. And if a child does not have a “leaky gut” but instead a simple lactose intolerance, then you are putting the child and the parents to a lot of unneccesary inconvenience. And, as far as I know, most DAN!s don’t test for lactose intolerance (or celiac disease, or conventional allergy to wheat and milk).

  27. Broken Link December 30, 2006 at 12:52 #

    DAN! “doctors” only need attend one brief training session. After that, I doubt that most individual trainees follow what is going on in the world of DAN! I’d be willing to bet big bucks that our local DAN! (who is a medical doctor and a parent of an autistic child) is completely unaware of all the Kerry/chelation/child abuser issues out there. The problem is with the management of the DAN! system, which is indeed corrupt. Allowing Kerry to become a DAN! is beyond stupid.

  28. livsparents December 30, 2006 at 22:01 #

    “Being ardently anti-Pharma and Luproning or chelating yourself is like driving a Buick Electra 225 with this bumper sticker on the back.”
    Hey I have one of those stickers! ‘cept I drive something that gets 35 mpg (ironically, I work for an oil company!)

    Again, the vaccuum was created by the established mainsteam medical process; where the ‘generalist’ is over worked, under paid, passing you off to the specialist, who’s REAL good at helping you with specific diseases, but does not treat the whole of the problem. Autism? Pediatric Neurologist…anything else wrong? She has autism…you are on your own to figure out the rest. It’s almost as if the diagnosis gives the mainstream carte blanc(he?)to ignore any other medical conditions (perception on my part, I know, but many many parents report the same thing).
    Back to the vaccuum and those that step in to ‘save the day’. Those who, at least, put across the perception of caring holistically about the autistic childrens’ problems. I don’t disagree that they will take the use of the ‘weapons’ against autism a little too lightly. I could see where the ignorant and the unscrupulous meeting could produce a potentially harmful outcome.

    But I don’t find a lot of difference between those ‘holistic’ doctors using somewhat uncontrolled substances and those pharmeceutical companies and doctors pushing the drug of greatest profit on a generation of parents told that kids can be pharmacologically controlled. The main differences are the number of zeros after the potential profits and the number of kids and families impacted.
    Not defending DAN!, just condemning pharma for the same larger crime…

  29. Joel Smith December 30, 2006 at 22:17 #

    (deleted the second post of my comment – oops)

  30. Joel Smith December 30, 2006 at 22:17 #

    There’s one more difference:

    The “big pharma” did have to do research studies and convince some government employee that making the drug legal is a good idea. Yes, I’m sure the process has flaws, but there is a process.

    Contrast that to much of the biomed community. Who oversees them?

    That’s my biggest problem. And before someone says the oversight never works, I note Dr. Kerry is being investigated by his state medical board. I’ll take the option with some oversight – no matter how small or ineffective – over the option with *NO* oversight.

  31. notmercury December 31, 2006 at 01:41 #

    http://www.timesonline.co.uk/article/0,,2087-2524335,00.html

    The payments, unearthed by The Sunday Times, were part of £3.4m distributed from the legal aid fund to doctors and scientists who had been recruited to support a now failed lawsuit against vaccine manufacturers.

    —————————-
    “The ironic thing is they were always going on about how, you know, how we’ve hardly got any money compared with the other side, who are funded by large pharmaceutical companies. And I’m thinking, judging by the amounts of money you’re paying out, the other side must be living like millionaires,” he said.

  32. Angela Kennedy December 31, 2006 at 19:03 #

    So the Sense about Science advice is basically telling people to trust peer review completely and not to worry their little heads about the flaws of THAT process- even though those flaws have been discussed often enough in the ‘media’.

    So where oh where is the ‘sense’ in that? There are much better processes/strategies for evaluating claims, and many people could learn them quite easily, instead of having to rely second-hand on a system so ridden with problems.

  33. Kev December 31, 2006 at 19:06 #

    Hi Angela,

    I don’t think anyone is claiming that peer review is error free, however, as a process it has certainly provided us with excellent results and its certainly better than no sort of peer review whatsoever.

  34. Joel Smith December 31, 2006 at 19:49 #

    I’d be fine with a better alternative than peer-review. Can you describe that alternative?

  35. Angela Kennedy January 1, 2007 at 11:45 #

    Joel wrote:

    “I’d be fine with a better alternative than peer-review. Can you describe that alternative?”

    Kev wrote:

    “I don’t think anyone is claiming that peer review is error free, however, as a process it has certainly provided us with excellent results and its certainly better than no sort of peer review whatsoever.”

    Hi Joel and Kev,

    Well, no. A better alternative to peer review in academia per se I do not have at this moment. I don’t think anyone yet has this. Many people no doubt are considering that issue already, and it is possible an overhaul of peer review procedures may suffice (at this stage, like many, I don’t know for sure though). I am not actually arguing with just doing away with peer review as a way to disseminate scientific or social scientific findings/claims etc. though I would elaborate on Kev’s point by arguing that the results using peer review are varied, so sometimes indeed maybe excellent, but also sometimes ludicrous.

    The ‘sense about science’ organisation is briefed to communicate and promote ‘science’ to the ‘lay’ public. With the rapid progress of information technology and public accessibility, global changes in managing ‘risk’, and changes in the way people engage with bureaucratic power structures and claims to ‘expertise’, many lay people are developing more critically evaluating approaches to the information they receive, especially when ‘scientific’ knowledge impacts on their lives.

    So what concerns me is that the best ‘Sense about Science’ can offer is a document which only tells people to trust peer review, ignores the flaws of that process, and does not give them any strategies for sensibly evaluating claims and evidence themselves. This has the effect of potentially keeping people in ignorance, relying merely on the views of ‘experts’. This coming from an organisation which is supposed to be promoting public engagement in science issues is frankly astounding, and very worrying. It appears if anything to have a potential dumbing down effect.

    Joel when you said you’d be fine with a better alternative to peer review, if you meant strategies for individuals to evaluate claims, evidence etc. for themselves (either as academics or as lay people) then yes there are strategies people can use.

    Best wishes

  36. Joel Smith January 1, 2007 at 15:29 #

    I agree, with sufficient time and background education, the average person can evaluate many scientific papers. However, I’ll be the first to admit that I can’t read every scientific paper out there to “see for myself.” Thus I do rely on the peer review process among other things to weed down the number of papers.

    Does this mean I’ll occasionally miss something? Sure. There are millions of peer reviewed articles, and probably 10 times that in non-peer reviewed science. The chance of finding gold is much higher among the peer reviewed science (can you name a Nobel award in the sciences that didn’t involve a peer-reviewed paper?).

    In addition, based on personal experience, it appears that most people do not have the ability to evaluate the research themselves. Perhaps if they spent more time learning about statistics (quick, what does a double-tailed-T-test do, and when would you use it versus a single-tailed-T-test? It’s next to impossible to evaluate a paper without knowing statistics), and the background information about their study (question: Can Thimerosal get through the blood brain barrier? If not, regardless of the claims of a paper, it isn’t going to affect the brain).

    Of course instead of that pesky mathematics and science, you could just take the researchers’ word for things. Oh, and there’s a chart which makes it obvious that the autistic kids have problem A while the neurotypical kids don’t (one problem: Is the data actually meaningful, and is the difference between groups “real” or just chance – statistics is how you answer the second question).

    Or you could look at peer review stuff, where independent experts – with the background knowledge – reviewed the papers, checked the sources they cite to ensure they say what the researchers say they say, and the statistics actually support the claims in the conclusion of the paper. (yes, I know all of these processes have problems and fail far too often, even among peer review. That said, I think they do a better job than the average citizen or parent can do).

    I know there are a lot of Erin Brockoviches in the world, and everyone likes to think that they somehow have the secret the illumanati have been hiding from them – that world pulled over their eyes to keep them from seeing the truth, as the Matrix says. But fortunately, they are much smarter than the people who make a living researching these things, and are able to show the world what their true motives are. I just find that in my reality this is very rare, unusual, and often a sign of delusional thinking.

    As for gut research, I’d agree that research money is being overspent disproving things that are already disproven, in the hope to finally convince the public that these theories are false. Of course, like proving the moon landing really happened, it won’t convince true believers. People that have shown a distaste for true science aren’t likely to be persuaded by science. How much did we spend testing the MMR? How about Thimerosal? How much of that wasn’t spent on gut research, as a result? If you want to talk about your pet theory not being researched, you might look at where the money has went. You might also decide that supporting this false science at the expense of true investigational research is a bad policy.

  37. Angela Kennedy January 1, 2007 at 17:25 #

    Hi Joel,

    My personal interest in the peer review process, but also in lay engagement with claims to expertise, was initially as an academic myself (a social scientist). The academic became personal when my daughter contracted a disease that disabled her, but which has been subject to damaging discursive constructions influenced by poor science, which has had direct adverse effects on her health that should not have been inevitable. But my particular interest as such isn’t autism, so I didn’t get all you were saying in your last post related to autism. I came to this blog via the Crippen blog recommendation, and saw the ‘sense about science’ pdf document.

    My point is that some lay people, for the reasons I said before, but also because of the adverse impact on some lay persons of say, poor science, will have become more critically evaluative, and do not need to leave it (to paraphrase your words) to “much smarter people making a living doing these things”- indeed to do so may be politically naive and indeed dangerous. Sense about Science, ostensibly to help the public engage in science, by documents such as the one on peer review, is in effect in danger of discouraging that process at anything but the most superficial level.

    So some may not want to engage in interrogation of claims to expertise. That is their choice. Some may believe that people claiming expertise or being given money to do research do a much better job at evaluating research than ‘the average citizen or parent’. Well they are free to believe such a slippery generalisation- it does not make it correct. Others might see flaws in such a claim, especially those of us academics in the social sciences, for whom the study and interrogation of issues of ‘knowledge’, power and ‘expertise’ starts early, at first year undergraduate level, to Phd level, and beyond!

    So I suppose it is a case of do ‘lay’ people want to ‘leave it to the experts’ per se? Or do they want to learn to critically evaluate various claims made in ‘science’ which impact directly on them, sometimes adversely, and for reasons that should not be inevitable, so that they can make their own decisions for progress based on rational judgement? Joel, are you really saying lay people shouldn’t bother trying to develop their skills of rational judgement? Surely not? Personally I believe many people under the umbrella of ‘average citizen’ or parent are capable of developing skills of critical analysis, and some even have these skills already, despite the onslaught of the dreaded spinmasters, elitist control of information systems, and reality TV… ; )

    My other problem with what Joel wrote is the use of words like ‘true believers’ and ‘delusional’ and references to moon landings etc. and ‘distaste for true science’. Talk about guilt by word association! Surely you are not claiming people who critically evaluate claims made in science are ‘anti-science’or have a ‘distaste’ for science? If that were the case it would mean the vast majority of the scientific and affiliated communities themselves were ‘distasteful’ of science.

  38. Joel Smith January 1, 2007 at 17:43 #

    I stand by my comments that I’ve seen very few lay people who have the ability to pick apart a peer-reviewed journal article based on the science, statistics, and research methods in the article.

    Yes, I do think nearly anyone can be taught (or teach themselves) how to do those things. But the reality is that most people not employed full time (or studying full time) in the sciences lack the time to put in the necessary work to get to a level where they truly are smarter in a subject area than the people doing it full time.

    Yes, there are people with no formal education or experience, doing it as a non-professional interest, who can and do analyze scientific papers. And if people are interested in learning to do that, that’s great! But it does require significant effort and work.

    And I’ve seen it done badly far more often than I’ve seen it done correctly.

    I’m not claiming people who apply valid scientific thought processes to research are anti-science or have a distaste for science. Besides, I usually don’t imply in my writing – I’m fairly direct! I am claiming that when someone pulls an article out of Medical Hypothesis and says, “See, this proves that Thimerosal causes autism!” when every reputable journal has articles indicating the opposite, and that person doesn’t provide any evidence that the reputable journal articles are flawed (as they certainly can be!), nor can they evaluate whether or not the Medical Hypothesis article is flawed or not – well, that’s not pro-science. For people in this situation, unwilling or unable to learn what is necessary to truly evaluate the science, I think sticking to peer reviewed articles is better than the alternative. Certainly, if they are willing to learn the background information necessary to evaluate things on their own, more power to them.

    That said, I do not think it is “anti-scientific” to place some value on academic methods of research and publication, either.

    (Oh, I also have background in the sciences, mostly Computer Science – including research funded by NASA – but that’s not why I think what I’m saying is correct. I’m trying to refrain from an argument from authority as it’s rather hard to discern the authority of each other in this area via a third party’s internet blog!)

  39. akazmd February 27, 2007 at 16:00 #

    Read this post on John Stossels recent vaccine-propaganda. We need to let the media know that we won’t blindly digest one-sided reports.

    http://www.therapytimes.com/blog/AmyStorer/

    Nothing to Fear But Fear Itself
    Posted At : 2/26/07 3:12 PM | Posted By : Amy Storer
    Related Categories: healthcare propaganda

    Are you and your patients worrying yourself to death? One of the country’s leading consumer reporters thinks so, and wants to set the record straight.

    In this John Stossel report that aired on ABC this past Friday night (2/23), Stossel raised a few interesting points about the power of healthcare propaganda.

    Stossel says the media – in collusion with trial lawyers – is perennially peddling fear. Stossel laments that, in his opinion, the media hits us with endless warnings: terrorism, bird flu, vicious crime, cancer, global warming and much more.”But are all worries created equal?” he asks rhetorically.”It turns out that what we worry about is often different from what’s most likely to hurt us.”

    He talks about how some activists, like Bobby Kennedy Jr., have blamed some vaccines for IQ loss, mental retardation and autism. Stossel says these activists and lawyers may actually be killing people by frightening the public about vaccines. An interesting angle to say the least.

    If anything, it makes you think about the inforamtion we’re fed. To be critical of what we hear. To use the pleathora of information that’s now at our fingertips via the Internet to investigate for yourself and get second opinions. It also makes me feel a greater sense of responsibility as a journalist to bring you the most objective information as possible.

    By far, though, I’d have to say the most interesting part of the interview was when he was grilling an attorney involved in a campaign that made the public scared of vaccinations – a campaign convinced masses that vaccinations caused autism.

    The National Academy of Sciences has looked at it and says the increase in autism diagnosis is mostly because they used to call these children “mentally retarded,” and now we are more sophisticated about defining autism spectrum disorders and we call them “autistic.”

    That really hit home for me. Especially now that we in the therapy world are hearing the term “autism” more often now than ever before.

    And plus, I heard there’s a brand new vaccine out that claims to prevent cancer (HPV). There might be other vaccines in the future that prevent prostate cancer, breast cancer… things that have the potential to completely change your world as healthcare professionals… but the public may be afraid to adapt to such treatments due to propaganda that incited fear of vaccinations.

    Take all of this with a grain of salt though, because you have to keep in mind that February is a “sweeps month”- the time period that is used as the benchmark for TV viewership and the setting of prices for commercials. So, maybe Stossel’s report about this issue is just healthcare propaganda propaganda. What do you think?

  40. Lucas McCarty February 27, 2007 at 23:26 #

    Just to comment that I’ve been attending the NAS Prospects course for three months now and did a presentation the other week to professionals, educators, parents and the course providers. They thought it was accessible enough without turning me into a self-narrating zoo exhibit that they are seriously considering giving me paid work as a consultant. Whopee!

Comments are closed.

%d bloggers like this: