Sunday, October 07, 2007

More evidence that the impact of biomed, if any, has been limited

[ERRATA 10/13/2007: Based on commenter feedback, I have changed the title from the strongly worded "More Evidence Of The General Ineffectiveness of Biomed". A few words have been inserted in the post in relation to this clarification. The term "high functioning" is sometimes used to indicate that a child would no longer be eligible for developmental disability services.]

What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing broad results hold water. I think administrative data is adequate to test this belief, as I will explain.

So what is it that biomed peddlers are generally claiming? First, they are telling us that biomed is recovering autistic children by the "thousands." They also tell us that those of us who do not experiment with our children using biomed will soon repent, that we're guilty of child abuse, and so forth. They've been saying that for years actually.

Regular troll to the LB/RB blog, 666sigma, tells us that most of the autistic children where he lives have pretty much recovered, and the ones who are now mainstreamed without autistic traits are precisely the ones who are doing biomed (source). Let's put aside for a moment 666sigma's confirmation bias, and consider what would happen if what he says is true.

Now, keep in mind that about 74% of autistic children in the US are currently subjected to alternative medicine (Hanson et al., 2007). If biomed were generally and broadly effective, it follows that a significant number of autistic children must constantly become high functioning, if not lose their labels altogether.

I think any such effect should show up in California data. Suppose a child is born in 2001, is diagnosed with autism in 2004, and enters the CDDS system then. Your average parent in the US will naturally at that point Google their way to the biomed treatments of vogue. I would assume that by 2006 the child should be expected to be high functioning or recovered, right? This means that the child would lose their CDDS eligibility and would no longer appear in the report. It's important to realize that the state of California is very much concerned with CDDS caseload growth, to the point that in August 2003 a law was enacted (CA AB1762, W&IC 4512) with the explicit purpose of supressing this growth (source). The law requires the applicant to have three life-functioning deficits instead of just one. In fact, 2003 and 2004 saw more autistic individuals dropped from the system than any year prior, at least since 1999 (source).

Note also that CDDS reports are generally on clients with active status, and losing eligibility causes someone's status to become 'Closed' (source).

Thanks to David Kirby, who brought it to my attention, I happen to have data on caseload by birth year cohort from CDDS, as reported every quarter. We can check what happens to the caseload of autistic children born in 2001, for example. I actually went and made a graph of caseload for birth years 1999 to 2004, as reported each June from 2002 to 2007.



This graph shows that with each year that passes, the number of autistic children receiving services from CDDS born in any year between 1999 and 2004 does not drop, but instead continues to increase. The following graph, which might be clearer, illustrates what has occurred to the caseload of children born in 1999 specifically.



From these data we can conclude that autistic children born in recent years in California are not dying in significant numbers, are not moving out of the state in significant numbers, and I would also assert they are not recovering in significant numbers. There are some limitations to the data. For example, it could be argued that increasing recognition of autism is so relentless that it overshadows any recoveries, particularly those that occur before the age of 5 or 6. The data also seems to suggest that no treatment is effective, but in fairness, 40-hour ABA is probably a rare treatment in practice.

In all honesty, though, what we're looking at is the reality that autistic children are not going anywhere. The vast majority will always be autistic. I cannot have respect for parents who delude themselves into thinking some hogwash will magically turn their autistic children into non-autistic ones based on just-so stories they read on the internet.

34 comments:

  1. It really would be nice if someone were tracking what injuries have been caused by herbal/mineral concoctions dreamed up by parents or the self-designated natural healers in whom they place their trust.

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  2. I'd like to see what the turnover is for patients of DAN! dox. I'd also like to see if the number of DAN! dox has stayed relatively the same or has increased significantly over the past 3 years. If the region I live in (Lenny Schafer's stomping ground, essentially) is representative, it doesn't bode well for the popularity of DAN! led biomed. My area has very few DAN! doctors, and there don't seem to have been any new ones added in the past three years... the ones in the greater Sacramento area say going within an hour drive in any direction from Sacramento, have a lousy reputation among the local DAN! fans. They seem to like Lynn Mielke, but she's in the San Francisco area (like 2 hours from Sacramento) and then there's Miriam Jang who has a reputation for being not that nice and who also nearly killed a kid by recommending massive doses of vitamin A that nearly destroyed the three year old boy's liver.

    Lenny's son's DAN! weirdo used to be (I don't know if he still is) Jeff Bradstreet, who is in Florida. I've never read where Lenny took his son to anyone else local. Recently, Kenneth Stoller has started seeing kids in Sacramento in an HBOT clinic. I don't know how that's working out. It looks like Stoller doesn't have enough business in Arizona or wherever his home is, to keep him busy there.

    There's such a weird disconnect between the fact that a developmentally delayed kid can be labelled "autistic" and make a huge leap off the "spectrum" that the kid was never on... and then declaring really autistic kids as cured/recovered when they plainly are not.

    Then there's the whole "moving higher on the spectrum", "moving slowly off the spectrum" bizarreness, that doesn't take into account that the kid is growing and learning. And intelligence is conflated with "functioning".

    Functioning started out as meaning being able to function in society, care for one's needs more or less independently. Hence, a "high functioning schizophrenic" is one that can manage his or her symptoms and not end up living with his/her parents or in jail.
    this article uses the term "high functioning" for schizophrenia.
    "Psychiatrists traditionally have not made a distinction between symptoms and the ability to function, Cournos added. "It's important to remember that there is a difference between the two. We've had patients here who are very high-functioning and psychotic, including a woman who ran a very high-powered executive program but at work wouldn't write anything down. She coped by memorizing everything she had to do because it drowned out the voices."

    Now just about any kind of "functioning" can be called "high" or "low" depending on how the person speaking defines it at that moment. For some reason "Rain Man" was called, "very high functioning"... I wonder if that meant he was practically "off the spectrum"?

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  3. Isles: There have been several deaths due to curebie-ism, if you consider claptrap beyond just chelation, such as exorcisms and such. It follows that many more children are probably harmed but survive. It's not clear, for example, what will happen to the renal health of kids undergoing chelation therapy for years. There is no precedent for these sorts of treatment durations.

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  4. Ms. Clark: My guess is that DAN! is in decline, but alternative medicine is not. There are too many anecdotes posted on the internet, and parents just go for them. There is new woo popping up all the time, like MonaVie and the Thought Screen Helmet.

    I would suggest it's also a side-effect of early diagnosis. The earlier the diagnosis, the harder it is to predict if the diagnosis will hold some years later. As a result, you will obviously have more and more anecdotes of "miraculous" recoveries which are not miraculous at all, but expected.

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  5. Do you consider restrictive diets and Mb12 shots quackery?
    Because if it wasnt for that biomedical intervention my son wouldnt have a third of the skills he does now.
    Phil

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  6. Phil: Uncontrolled observations don't tell us much and could be misleading. Kev or Janneate (mom26children) or Estee, for example, see their kids make marked progress and they probably think it's the acceptance. They could very well be wrong as well, to be honest.

    See my post on placebo effects for my all-purpose answer to that sort of claim.

    In particular, Me-B12 has actually had a double-blind study. See NotMercury's post on it. Any idea what Neubrander is saying about this nowadays?

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  7. The uncontrolled observations I made happened over 3 days, significant devolpement that was noted by every profesional that we came into contact with.
    the large number of people (not just parents, or people with an interest in selling biomed) reporting "improvments" can not be ignored.
    sure we need more studies but until then you should tell parents to try restrictive diets, anocdotal evidence says they work.
    phil one day I will shake your hand

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  8. Anecdotal evidence in autism is notoriously and specially bad. This is because the kids "improve" all the time. Should I advise people to build themselves a thought screen helmet because of its testimonials?

    Again, lessons from Secretin. Secretin = waste of time and resources. Should be required learning for every autism parent.

    Also, the GFCF diet has had its first small-scale double-blind study. Once again, it was found to be the same as a placebo.

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  9. Joe, I don't think it's fair to keep refering to secretin (of which i know nothing about).
    If that was bogus then so be it.
    But the GFCF diet and MB12 shots have produced amazing miracles in many children. The main thing for me is that my child is one of those children.
    If you really have the interest of these kids at heart then you would be really interested and excited that for some reason many children (not all) respond amazingly with these interventions.
    This is not quackery...and it distresses me as a parent who was able to see my child gain incredible ability once these interventions went into place, that you would come out against them.
    Many other children are in need of these interventions.
    Take a look at Sageyrudmans videos.
    first look at her video called "the face of autism zoe" or something like that.
    she is all for accepting autism.
    and then look at her thank you video to me (thank you phil commander).
    she put her child on the diet that i recommended and saw amazing results.
    we arent making this up Joseph...it's real.
    Too many kids are in need of these diets.
    and many kids are in need of Mb12 shots.
    look at my videos and see the results ive had.
    i saw no results with chelation or hbot.
    i am very fair in my evaluations...i dont say everything helps...only when i know for a fact it helped do i declare it.
    I declare that the gfcf/scd diets and mb12 shots were a miracle to my son.

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  10. Phil, I don't doubt that your kid has made progress. I've seen your videos. Do you deny that Kev's daughter, for example, who is very much classically autistic, has made a lot of progress as well? Do you think Kev is doing Me-B12 on the side or what?

    I don't mind research into treatments. Let the researchers do their thing, that's fine. What I don't like is people proclaiming that things work when they can't possibly know they work. Your personal experience on correlations you see is not data. Multiple anecdotes are not data either. You are misleading people by telling them you know stuff works.

    Phil, a Me-B12 double-blind study, however limited, trumps any anecdote. You don't expect me to believe your assertions, however strong, over science, do you?

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  11. Prometheus has written a relevant post titled But It Works!

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  12. Joe,
    You tell parents NOT to seek medical attention. You have NO WAY of knowing if those children will benefit from that medical attention.
    You are not qualified to give a medical diagnosis and have not examined each child.
    For me to tell parents what worked for me and to encourage them to look into certain treatments under a doctors supervision is just one parent telling their story and giving their opinion.
    You are telling them NOT to seek medical treatments.
    That qualifies as a Medical Opinion by someone who is not trained to give medical opinions.
    Look out or someone may accuse you of being a quack because that's what quacks do. They Mislead people into thinking that they are qualified in the medical fields when they are not.
    Joe, you are simply NOT qualified to tell parents that their children will not benefit from certain medical interventions.
    You have never met my son nor me, never evaluated him, and yet you say that what me and my wife and other family members saw didnt happen or didnt happen for the reasons we claim. Yet you were not here.
    Thats an amazing assertation.
    Thats like me saying to you that you don't have autism and your diagnosis was flawed.
    how would i know?
    how would you know?

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  13. You tell parents NOT to seek medical attention.

    Phil: Please refrain from lying about what I've said.

    You have never met my son nor me, never evaluated him, and yet you say that what me and my wife and other family members saw didnt happen or didnt happen for the reasons we claim.

    What I've said is that there's no evidence to support that it happened for the reasons you claim. This is completely accurate.

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  14. How do you explain this?

    I have never seen a DAN! doctor, but my daughter is GF/CF. Yes, this is anecdotal, but keep in mind we homeschool, so I do know what foods she had access to in these cases. Also, since I work with her every day, I knew what to expect in her behaviors and any diet violations I am reporting were not often, but did reveal the need to stay away from certain foods:

    1. When she was four, I noticed that apple juice and apple sauce gave her insomnia. Prior to taking her off apple products, she slept about four hours a night, restless, kicking, head sweats. We take her off apples and she starts sleeping normally for three months. We were vigilant about apple products and every time she developed insomnia for a night or two we could trace it back to apples. Her normal sleeping patterns continued, except when she accidentally got access to apple juice.

    2. She had no success in potty training during her preschool years. We put her on the diet when she was six and, in two weeks, she had bladder and bowel control. Coincidence? Every time she had a slip up in the diet, she lost bladder control the next day. In one case, my entire family saw her pick up a biscuit and eat a few bites before they could stop. I predicted three things to happen the next day: loss of bladder control, a rash, and irritability. Up until that point in the family vacation, she had displayed none of these symptoms. It happened just as I had predicted.

    3. Another thing I noticed is that she would eat the wrong food, she would "forget" her math skills for about three days. It became too frustrating to try and teach her on those days. So, if she ate the wrong food, I would see if she could do math. If she struggled, I skipped it for three days because there was no point in it.

    Are you also denying carefully observed (yes, I know not double-blind placebo-controlled--I have a master's degree in statistsics) connections between behavior and food?

    I am not a cure-bie. I like my daughter for the person she is, and she has many wonderful qualities that I would not trade for the world (sweet, gentle, beautiful smile, honest, orderly, unique point of view, empathetic)! But, I do want to make sure that, when my husband and I die, that we have helped her to learn the skills she needs to have in order to have a quality of life. If she is not ready to be independent, I hope that she has enough skills to be a joy to the people with whom she lives and be appreciated and loved for the person she is.

    We have been very thoughtful, I think, in picking and choosing what to try to improve quality of life and not get taken to the cleaners.

    She is not a miracle child, but she has worked hard and been so diligent and patient in all the strides she has made! She has syntactic aphasia and difficulties in her social interactions. However, she gets her full eight hours of sleep a night, is no longer in diapers, and can focus well enough to work up to a sixth grade math level, read and enjoy upper elementary chapter books, draw and sew really cute animals, and write (and enjoy writing). Getting by on only four hours of sleep a night, I do not think she could have accomplished what she has.

    I will be very disappointed if you insult me as you have insulted other parents. I have tried to be respectful in my comment, nor have I cast dispersions on your intelligence.

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  15. I thought apples made you sleepy.

    I'm not discounting that food can affect the way you feel. It's a good idea to be well fed, too, no doubt. Some of the things you said seem far fetched, though.

    My classically autistic non-verbal son was potty trained last year, at the age of 5. (Virtually no accidents since then). I don't think this is explained by his diet.

    What I don't see evidence of is that a huge list of supplements can treat the construct called autism. But more importantly, I question whether they are necessarily safe. I don't think it's a good idea for people to be giving out medical suggestions, when the safety of stuff is unknown.

    I don't believe I've insulted you either, unless questioning your beliefs is something you perceive as an insult.

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  16. Joseph,

    I believe that is warm milk and turkey . . . ;-)

    I relish a spirited discussion, as long as it is not mean-spirited. I believe you when you say that your classically non-verbal son potty-trained at five without a special diet. I believe that a small subgroup of children on the spectrum benefit from this diet. I stress benefit (not cure).

    I think it is worthwhile to read up on the history of PKU. An obscure doctor from Norway identifies a subgroup of mentally retarded children with ketones in their urine based on the efforts of one family. He suggested putting kids on a weird restrictive diet. It wasn't for another fifteen years that the right diet was formulated for these children. Scientists developed a test to screen these children at birth and put all children identified as having PKU on a special diet. Later, they determine a genetic reason for this.

    I believe that the same is true for a subgroup of children with autism. There is even an animal model hinting at a connection between the gut and brain and autistic like behaviors in mice.

    I am sorry you find what I and several members of my family have seen with our own eyes far-fetched: a clear and predictable cause and effect relationship between food and behavior. I did not mention earlier that she had already had skin allergy tests from a bona fide allergist which determined she was mildly allergic to eggs and strongly allergic to peanuts, but they ruled out wheat and milk (oddly enough). Plus, we had another coincidence of her chronic eczema (four years worth) and green, voluminous, nasty stools (also four years worth) disappearing after she went on the gf/cf diet. Fortunately for her, neither has returned! I had been told by her pediatrician adamantly that her eczema was chronic and incurable and had absolutely no connection to diet. A year later, my daughter's eczema went into remission!

    Thank you for your civil dialogue! :-)

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  17. I'm familiar with PKU. While it's not implausible that another PKU type condition could be found that happens to be a subset of what is called autism or mental retardation, it's obvious that disabilities usually are more complex than something that can be controlled through diet.

    For example, in autism it seems that minicolumn size is reduced (not always but generally). This cannot be changed through diet.

    Either way, this would be the kind of thing researchers need to look at. Let's let science do its thing. Again, what I have a problem with is absolute proclamations of "truth", the whole concept of "alternative medicine" as a valid alternative to evidence-based medicine, the disregard for safety, people who try to make money off of autism, etc.

    I don't have a problem with people hypothesizing or speculating, if they say they are hypothesizing or speculating. I do that myself often enough.

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  18. Ok Joe, since you claim that i am unscientific i will now prove you wrong. I didnt respond to this useless blog of yours due to the fact that its logic is pathetic.
    But since you doubt my ability to debate the 'science' i will show you that not only do i have the ability but i will also show you that many of your readers are easily decieved by your blogs.
    Lets tear apart your logic first...

    You claim that if parents are using biomedical interventions on their children then those children should be recovering and therefore lose the label.
    Please re-read your opening paragraph.
    You state that you want to verify "whether claims to the effect that biomed is producing results hold water."
    wait a minute joe, are we looking into whether or not biomed "Produces results" or whether biomed "recovers".
    You cant change the purpose of the blog suddenly.
    You start off by saying does biomed produce results then switch it to does biomed recover children.
    Producing results and recovering are two different things.
    Just because biomed may not recover children does NOT mean it doesnt "Produce Results".
    MB12 produced results in my child that were astonishing but I really don't believe that MB12 shots on their own would EVER recover a child completely!!!
    (using the word 'recover' with an understanding that its a controversial word...i personally dont use that word).
    So you can have a child that gains skills and development with MB12 or restrictive diets but if there is no behavioral intervention taking place then that child will probably not lose the label.

    So your logic that if a child is receiving services then they havent lost the label then none of the biomedical interventions being done with that child are producing results is just pure lunacy!
    how can you be so illogical?

    A child can have great results with the gfcf and still be VERY autistic. My son had GREAT results with gfcf, scd, and b12 but still would have had the label.
    Your logic that if a child is doing great with biomed then they will continue to recover is WRONG!
    if ONE equals "EXTREMELY AUTISTIC" and TEN equals "RECOVERED" and a child starts out as a TWO and biomedical intervention brings that child to a FIVE then the biomedical intervention Produced Results but didnt Recover or remove and label and wouldnt take away any services from that child.

    so to conclude biomed doesnt work because the same amount of children are receiving services is just about the poorest logic ive seen in a while.
    Thats like saying "If a painting on a wall is in the sun it will fade, so therefor if fading continues eventually it will be white, i am looking at a painting on the wall and it is not white, therefor it has not faded".
    that is the logic you are employing in this article joe.

    Heres another quote of yours Joe...
    "If biomed were generally effective, it follows that a significant number of autistic children must constantly become high functioning, if not lose their labels altogether."

    Again, NO IT DOESNT FOLLOW!!!
    thats bad logic. A child doing very well on biomedical intervention does NOT mean they will become high functioning...it just means they progressed more than they would have without the biomedical intervention.
    I could turn this around on you and say this
    "Joe claims that children left on their own with no biomedical intervention gain skills and develop. So it follows that they will continue to develop until they lose their label. So children who do not use biomedical interventions should all lose their labels."
    THATS THE LOGIC YOU ARE USING!!!

    I seriously could go on and on with this article and if you want me to i will...this is just what i got out of the first few paragraphs.
    Its a poor display of logic joe...and incredibly unscientific. This is why i dont believe in science.
    Phil

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  19. I won't qualify your statements the way you have described me or this blog, Phil. But I will address the part that looks like an argument.

    As I clearly explain in the post, I'm not looking for full recoveries. In California, it's sufficient if a child does not have 3 life-functioning impairments, and they are no longer eligible for services, pretty much. Many Asperger's kids in California are not eligible for services, for example.

    Second, it is true that people are claiming that kids are recovering by the "thousands". I'm not sure what exactly the claim entails, and I don't know where this "data" comes from, but that's a claim that's made. If kids are recovering by the "thousands", I would assume many more are improving considerably.

    If recoveries, or more precisely, improvements to the point where a child no longer has major impairments, occur all the time, I would expect the curve for a birth year cohort would hit a peak, and then gradually start to phase down as more recoveries/improvements occur. This should be a pretty noticeable slope, more than would be expected as part of the natural course of autism.

    Instead, what we see is that the caseload for a birth year cohort is always trending upward, up to about the age of 8, where it levels off.

    But like I admit in the post, (this is called intellectual honesty Phil), there are limitations to this type of analysis. For example, some early loss of label would probably be hidden away by the increasing recognition of autism as kids grow up. It's even possible that the leveling off at the age of 8 is the result of two divergent trends.

    However, the curve is generally suggestive of the stability of autism, specially in mid to late childhood.

    You take issue with my analysis by using an analogy to the improvements that occur with the natural course of autism. There is a big difference. Yes, I think some autistic children develop to a point where they would lose services, but this is probably very gradual. You might see some declines by their teens (in IDEA there's a trend suggestive of this). Also, that an autistic person develops doesn't mean that they become "less autistic" (same with any developmental disability). The impairments will generally still be there, perhaps normed for different ages.

    The point is that biomed is supposed to drastically change the course of autism, and all I'm saying is that this should be detectable somehow.

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  20. you completely ignored my points.
    Let me make this one then...heres what you just said in your last post.
    "As I clearly explain in the post, I'm not looking for full recoveries."
    and heres what you said in the original blog...
    "I would assume that by 2006 the child should be expected to be high functioning or recovered, right? This means that the child would lose their CDDS eligibility and would no longer appear in the report."
    and you also wrote
    "and I would also assert they are not recovering in significant numbers."
    and you concluded
    " I cannot have respect for parents who delude themselves into thinking some hogwash will magically turn their autistic children into non-autistic ones based on just-so stories they read on the internet."

    You are the one talking about "Recovered"children Joe.
    Not once in this blog do you state that you are not looking for full recoveries (unless to you there is a difference between 'recovered' children and 'fully recovered' children!)
    you say you CLEARLY STATE you are NOT looking for fully recovered children. I cant find that anywhere but with my examples above i CLEARLY show you use the word "Recovered" over and over.

    But you ignore most of my argument Joe. why dont you address my entire argument.

    Just explain how you start off with this statement
    "What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing results hold water."

    and then suddenly you switch it to
    "Suppose a child is born in 2001, is diagnosed with autism in 2004, and enters the CDDS system then. Your average parent in the US will naturally at that point Google their way to the biomed treatments of vogue. I would assume that by 2006 the child should be expected to be high functioning or recovered, right?"

    notice you say recovered there Joe?

    Now you switch it to this
    " If recoveries, or more precisely, improvements to the point where a child no longer has major impairments, occur all the time, I would expect the curve for a birth year cohort would hit a peak, and then gradually start to phase down as more recoveries/improvements occur."

    Notice how recoveries got linked to plain old improvements in your COMMENT but NOT in your BLOG?
    Changing it up once again.

    This is the point i would LOVE for you to address.
    Some children progress much more so on biomedical than they would not on biomedical.
    This makes biomedical a valid intervention.
    It does NOT mean that they will lose the label.
    So your blog does NOTHING to show whether or not any one single form of biomedical intervention shows progress for children.
    Plain and simple, your logic that if a biomedical intervention helps a child progress so theoretically they should progress to the point where they lose services is NOT PROPER LOGIC.
    Just because a biomedical intervention helps a child progress doesn NOT mean they will progress to the point where they lose services.
    So all of those charts are a waste of time. They don't prove the effectiveness of biomedical intervention.
    All they prove is that the amount of kids receiving services hasnt declined.
    THATS IT!

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  21. You seem to be grasping as straws, Phil. In the part where you claim I said "recovered", I actually say "high functioning or recovered". Evidently, from what I explain in the post, "high functioning" is general terminology I'm using to refer to a functioning level such that the child would lose services.

    So all of those charts are a waste of time. They don't prove the effectiveness of biomedical intervention.

    Data is not a waste of time, Phil. I realize you think anecdotes are what count, and not data.

    Furthermore, I didn't say they prove biomed is ineffective. That would actually be verify difficult to prove. I'm saying they are evidence of a general lack of effectiveness, with the caveats noted.

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  22. Joe you still havent addressed half of my aguments.
    Grasping at straws?
    you start off saying
    "What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing results hold water"

    and now you say that
    "I didn't say they prove biomed is ineffective."

    So you have done my work for me Joe, you said you want to VERIFY using DATA whether claims that biomed produces results HOLD WATER.
    and in the end you admit that you didnt verify that biomed in ineffective.
    Joe, in case you dont know, Prove and Verify are synonyms.
    So to say you want to verify using DATA if biomed produces RESULTS (you didnt use the word RECOVER!) and then to say that " I didn't say THEY (refering to the data) PROVE (or verify) that biomed is ineffective (another way of saying doesn't produce results).

    So your blog and all its data by your own admission doesnt prove that biomed does not produce results. Which is what it claimed its intentions were.

    Who's grasping at straws...so go ahead and make another comment now that COMPLETELY IGNORES everything i just wrote.

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  23. Joe you wrote
    " I'm saying they are evidence of a general lack of effectiveness"

    The only way they are this is if you define "EFFECTIVENESS" as "Progress to the point of losing services".
    If that is how you define 'effectiveness' then you could make the claim that the data is evidence of a general lack of effectiveness. but that claim wouldnt nessecarily be correct.

    I don't think any parents define the effectiveness of ANY intervention by whether or not their child will lose services.

    They define it as whether or not their child will progress better with the intervention than without.

    Remember, you started off by saying that
    "What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing results hold water"

    "PRODUCING RESULTS".
    thats what this blog was suppose to be about.
    So let me ask you straight out, did you verify with that data that biomed DOESNT produce results?

    Keep in mind that you already wrote
    "I didn't say they prove biomed is ineffective. "

    Please answer that and my other questions posed to you.

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  24. You're wrong Phil. Suppose I say the following:

    "I am going to verify via observation if the claim that pigs fly is true."

    Is this the same as saying the following?

    "I'm going to prove that pigs never fly."

    Is there are difference, yes or no?

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  25. FYI - I have changed the title to "More evidence that the impact of biomed, if any, has been limited". The old title, "More Evidence Of The General Ineffectiveness Of Biomed" was admittedly too strongly worded.

    Is this title inconsistent with the data? I don't think so.

    Data is data, first of all. You can disagree on the interpretation of the data, or you can argue that the data is inadequate for certain types of analyses, but claiming that the data is a waste of time makes me wonder.

    It would seem to me that a more productive approach to debate would be to provide an alternative interpretation of the data in a respectful tone. Instead, the way Phil has approached the post makes him come across as being angered by the data itself, to be honest.

    As to his interpretation, which basically seems to be that biomed might be somewhat effective, but not enough to show up as a massive loss of disability services, that is fine with me. It does make the debate substantially different, doesn't it?

    For example, I don't doubt that Omega-3 has some marginal benefit over time. There's preliminary evidence of this. Both my kids take cod liver oil sometimes.

    But that's obviously not what the larger debate is about.

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  26. Joe, although i would love to comment further on your responses i notice you STILL have not answered my question...so i will pose it to you once again.

    "So let me ask you straight out, did you verify with that data that biomed DOESNT produce results?"

    seems thats a basically yes or no answer.

    now, as to being respectful...lets examine your attempts at being respectful in your original blog.

    you call us "biomed PEDDLERS".
    nice term...very derogative.
    "Biomed treatments of vogue"
    very derogative towards the seriousness of treatments by using the term 'vogue'.
    and then there are your closing lines...
    " I cannot have respect for parents who delude themselves into thinking some hogwash will magically turn their autistic children into non-autistic ones based on just-so stories they read on the internet."

    Geez Joe, and you want ME to be respectful to YOU???
    you are writing this crap directed at people like me. You sure don't seem to know how to handle it when one turns the table on you and your twisted "wisdom".
    Face it Joe, youre not that clever and you are misleading people with your so called 'logic'.
    My daughters employ better logic than this blog.
    you should have renamed the blog
    "a bunch of charts that prove there hasnt been a decrease in the number of children receiving services". cause thats the only thing those charts signify.

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  27. "So let me ask you straight out, did you verify with that data that biomed DOESNT produce results?"

    No. Where did I claim to find that biomed doesn't produce any results?

    You did not answer my question Phil.

    "I am going to verify via observation if the claim that pigs fly is true."

    Is this the same as saying the following?

    "I'm going to prove that pigs never fly."

    Is there are difference, yes or no?

    Also, I don't see how "biomed peddlers" is a personal attack of the nature you've directed at me. Did I say "biomed peddlers are all surely going to hell" or "biomed peddlers are pathetic"? Did I say "Phil is a pathetic biomed peddler"?

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  28. Joe asked me...
    "I am going to verify via observation if the claim that pigs fly is true."

    Is this the same as saying the following?

    "I'm going to prove that pigs never fly."

    Is there are difference, yes or no?"

    No they are not the same and i am glad that you finally realise what ive been talking about all along.

    You started off by saying this...
    "What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing results hold water."

    That IS NOT the same as..

    "I am going to verify via observation if the claim that pigs fly is true."

    The difference is simple..."Flying" is easily defined. It is something that is simple to prove or disprove or verify.
    "Producing Results" is NOT easily defined.
    You state you want to verify if biomed has produced results then set up this 'test' that says if children havent been taken off services it will prove that biomed hasnt produced results.

    Thats what the entire blog is about. Testing whether or not biomed has produced results.
    If you are not claiming that this can be verified by children losing services then why bring that element into the blog.
    As a matter of fact that is the only criteria you use to test whether or not biomed is producing results.

    Flying is easily defined, Producing Results is not.
    In your blog you seem to have defined "producing results" as
    being taken off of services.
    That is NOT how the overwhelming majority of parents would define "Producing Results".

    So the fact that no children have been taken off of services has nothing to do with the effectiveness or lack of effectiveness of biomedical intervention.

    In the end it would be like saying
    "I am going to verify via observation if the claim that pigs fly is true."
    And then checking local Vet records to see if any pigs have been brought in with broken legs.
    Your logic would say that "if pigs fly then it stands to reason that there would be poor landings and more broken legs due to the extreme wieght of the pig. So it stands to reason that there would be more vet visits. There has been no increase in vet visits that i can find so i this strongly suggest that pigs arent flying"

    This is just poor logic Joe. And that is what you have done. Take a look......

    I am going to verify if claims that biomed is effective are true.

    1) IF they were true children would be recovered in a two or three year period.

    2) If they are recovered then they would lose services.

    3) If no children have lost services then none have been recovered.

    4) If none have been recovered then biomed is ineffective.

    Every single step of the way your logic has made incorrect assumptions and deductions. I could point them out for 1-4.

    This is the best example of a Post Hoc Fallacy in logic and argument that you will ever find.
    Many events follow sequential patterns without being causally related.
    The ironic thing is that this sort of logic fallacy is what you claim us 'biomed peddlers' are guilty of.
    And many times we are, no doubt.
    Its just ironic that you yourself would practice this type of logical deduction and dress it up as science.

    ReplyDelete
  29. No they are not the same and i am glad that you finally realise what ive been talking about all along.

    Wait a second. So what was this about?

    you start off saying
    "What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing results hold water"

    and now you say that
    "I didn't say they prove biomed is ineffective."


    And what was this?

    Joe, in case you dont know, Prove and Verify are synonyms.

    Now you're saying that verifying whether pigs fly vs. proving that pigs don't fly is not the same thing. So which is it Phil?

    That semantics nitpicking doesn't seem relevant to me anyway.

    Now, let's look at the assumptions you claim I've made:

    1) IF they were true children would be recovered in a two or three year period.

    As I have clarified in the post, I'm looking at claims that biomed has had a major impact, recovering children left and right, to such an extent that those not doing biomed will repent, and so forth.

    I think the analysis is perfectly adequate to scrutinize this kind of claim.

    While I give a two-year example in the post, I've given data down to birth year cohort 1999. I can get even earlier data if you want. Of course you can claim that the stability there does not apply to stability of later years.

    2) If they are recovered then they would lose services.

    It is clear from CDDS documentation that a child no longer eligible for services has their status changed to 'closed'. And it is clear that California is getting picky about giving out services.

    California has a form called the CDER, which, as you can see, asks for the name of Physician or a Psychologist. Now, if you look at the CDDS reports, you'll see that they are pretty diligent about giving these evaluations. About 84% are less than 12 months old and about 95% are less than 18 months old.

    3) If no children have lost services then none have been recovered.

    This is roughly the same as # 2, but of course we're not trying to look at precise counts of recovered children.

    4) If none have been recovered then biomed is ineffective.

    I have clarified this several times now. I have reworded "general ineffectiveness" as "limited impact if any".

    So what is your interpretation of the data Phil? Kids are recovering a lot but this is not recorded in the data? Kids are not recovering a lot? Kids will recover much later?

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  30. Joe, I am not even going to bother going over your defending your logic. You cant and I feel it would be easier to show you the poor logic you use in this blog by me tearing apart your assertions that i numbered 1-4.

    "I am going to verify if claims that biomed is effective are true.

    1) IF they were true children would be recovered in a two or three year period."

    False. first of all a parent may be doing just one biomed intervention that is having fantastic results but they may be doing no behavioral interventions so therefore the child does not 'recover'.
    Secondly many biomed interventions have amazing results but only up to a certain point and continueing them after that doesnt produce more results...as in MB12.
    Thirdly, If you take an extremely low functioning child and they respond very favorably to biomed they still may never reach a status of 'high functioning' but they still may do much better on biomed than if they were off biomed.
    These are just three examples showing how that first statement is not a FACT which it needs to be if you are going to base further assumptions on the validity of that statement.

    2) If they are recovered then they would lose services.

    IF they are receiving services. Thats a big IF. My son does not receive services nor has he ever. I speak to many parents whose children don't receive services that they are eligible for.
    I could also stand to reason that a child that starts off more high functioning than another child may 'recover' with biomedical to the point that this child never was able to qualify for services.
    Many high functioning kids may not get services because the parents really don't see the need for them and see that biomed is doing enough on its own (although i dont claim that to be true).

    3) If no children have lost services then none have been recovered.

    The problem here is that new kid come and some old kids go. If there are a thousand new kids but the total amount only jumps 500 then 500 lost services. If 100 of them recovered due to biomed I think you are doing a disservice to parents by discouraging them from biomed when their child may be one of that 100.

    4) If none have been recovered then biomed is ineffective.

    Here is where i would say that biomed is definetly effective even if it doesnt 'recover' children.
    Now you say 'limited impact if any'.
    again joe, define "IMPACT". you use vague terms.

    Now how do i interpret the data...im not trying to be a wise ass or anything but it only shows that the number of children receiving services is slightly rising each year.
    There could be a million reasons why and your trying to lump in biomed just doesnt make logical sense.

    Think about this. I am sure some of those parents whose children receive services are from the Neurodiverse crowd. Or at least some of them have an accepting and positive view of autism and they are receiving services to help their kids gain skills.
    Many parents claim that this attitude of acceptance and love is more effective than biomed.

    It seems to me that (if i were to use your logic) If love and acceptance were more effective than biomed, and biomed claims to recover kids...then love and acceptance would recover more according to the ND crowd.
    (now i know thats a ridiculous statement but keep following).

    Why cant i claim that those charts show that NOTHING being done by parents is helping their children lose the label, recover, and lose services.
    Not biomed, not behavioral, not love, not posautive, not understanding, not kindness, not religion, not sugar, not tv, not anything at all!!!

    Why just pick on biomed? Why can't i do the same thing saying that the neurodiverse approach isnt having any impact either.

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  31. Does this technique of telling people their logic is like that of a young girl, asserting that they can't defend their logic, that they have poor logic, that they are pathetic, intellectually inferior, and whatever else, something that you've found effective in the past, or are you actually new at this?

    If you have good arguments, I would think they'd be able to stand on their own merits.

    And I see you've decided not to address my answers to the assmptions you claim I've made. You're just elaborating on your original statements. You also did not address your inconsistent statements in regards to verifying vs. proving a negative.

    Some of the points you elaborate on are not relevant to the discussion. For example, in #2 you say "IF they are receiving services". It should be obvious from the post that I'm referring to kids who are receiving services only. Data available is for kids receiving services. If your claim is that only kids not receiving services are the ones who recover, that's an extraordinary claim to make that no one has ever made before.

    What you say in #3 I've already addressed. I did note there are caveats. No one said the analysis is flawless. Even the best retrospective studies have potential counfounds and flaws. What did you expect?

    There could be divergent trends. Maybe a lot of kids are still being diagnosed at the age of 8 these days.

    There could be a million reasons why and your trying to lump in biomed just doesnt make logical sense.

    There could be a million reasons for any data trend. That doesn't prevent people from trying to interpret data, and finding plausible explanations for the data.

    About behavioral interventions, I did address that in the post. I noted that 40-hour ABA is probably beyond the reach of most parents. However, CAM/biomed in general is not.

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  32. Joe wrote
    "There could be a million reasons for any data trend. That doesn't prevent people from trying to interpret data, and finding plausible explanations for the data."

    Here you go again...you did not try and find a plausible explanation for the data presented to you. You attempted to prove that biomeds effectiveness is overstated and WENT LOOKING for data to prove this. The two are very different.

    And you failed miserably.

    And as far as the way i speak to you (the lack of politeness). Over and over again you use derogative terms to describe parents who preach biomed intervention. I am one of those parents. So i am personally offended by YOU.
    Its like using derogative terms against african americans and then when an african american gets rude with you ya say "hey, i never mentioned YOU by name so you have no reason to be rude to me".
    Joe, if youre gonna attack us parents who believe in biomeds then im gonna attack back.
    Seems you arent real comfortable with that...get use to it.

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  33. You're just repeating the same arguments over and over. I'll let you have the last word, Phil.

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  34. Ok then, here is my last word.
    Some biomedical interventions have wonderful results for some children. Some childrens abilities improve far beyond the point they would have if those biomedical interventions weren't tried.
    Just because it is anecdotal does not mean it is not wise to listen to it.
    A physician will use the testimonies of his or her patients to draw conclusions about certain medications or procedures. For example, a physician will take anecdotal evidence from a patient about a reaction to a new medication and use that information in deciding to adjust the prescribed dosage or to change the medication. This is quite reasonable.
    If your child threw up everytime you gave them a prescribed medicine and you told the doctor you would be enraged if he said that the medication had nothing to do with it because there is no science backing up that claim and you telling him is just anecdotal.
    Thanks for the last word Joe!

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