Wednesday, October 10, 2007

A Dose Of Real Autism Reality

It seems to me that many parents (and even some professionals) in the autism community are unaware of fundamental facts about autism. I cannot help but arrive at this conclusion when I witness factual statements such as "there is no cure for autism" twisted into mistaken or unsubstantiated statements like the following.

  • The bastards are telling us that our kids will never get better!
  • Loss of label in autism is so miraculous that some innovative cure must have made little Timmi recover.
  • My child would not have skills X, Y, and Z if it weren't for [insert woo].
  • My 2 year-old child will never be able to do X.
  • My child will necessarily end up in an institution.

When we deal with flawed premises of this nature, rational discussion obviously becomes very difficult. That's why I want to make this post a sort of all-purpose summary of what the science tells us in regards to developmental progress, adult outcomes, loss of label in childhood, speech, institutionalization, and shifts in parental beliefs. I will discuss factors that seem to be predictive of outcome, but don't expect any magical formulas or guarantees from me. I can only speak of possibilities and I will only report what the data tells me. I will not sugar-coat what the research says.

As always, if you find that I failed to include some relevant data, or if something I said is inaccurate, feel free to let me know in the comments section.

Developmental Progress

Recently there was some publicity sorrounding a study by Paul Shattuck which found that autistics "get better" in average (source). This type of finding is not new, however.

Even early papers by Kanner show that autistic children tend to make substantial developmental progress as time goes by. There are several other published findings as well.

Findings from Harris et al. (1991), for example, "support the notion that young children with autism can make very significant developmental gains."

Tager-Flusberg et al. (1990) found that language acquisition in most autistic children followed the same developmental path as that found in children with Down Syndrome, and that of normal children as reported in the literature.

Harris et al. (1990) found that all autistic children in the study made normative progress in their rate of language development.

Piven et al. (1996) reported "significant change over time in autistic behaviors, generally in the direction of improvement" in high-IQ autistic adolescents.

Charman et al. (2004) found that autistic children had "encouraging developmental progress" over a 1-year period, although no change in "symptom severity as measured by the Social Communication Questionnaire."

Of course, there is such a thing as "regression" and there are developmental plateaus, but these are the exception rather than the norm, and they will not necessarily persist indefinitely.

Adult Outcomes

The first adult outcomes reported in the literature can be found in Kanner (1971) and Kanner et al. (1972). The 1972 paper details the case histories of 11 (actually 13) of 96 autistic adults Kanner considered "success stories." The paper contains some discussion of predictive factors for a successful outcome, such as the presence of some expressive language before the age of 5, and effort spent to "compensate for the lack of inherent sociability" when the individuals were in their middle to late teens.

The only environmental factor Kanner found significant was a total lack of institutionalization. I see this as a key factor, and it would be difficult to do it justice with a risk ratio. Lack of institutionalization was practically a requirement for a successful outcome. On the other hand, from Kanner's 1971 paper it would seem that institutionalization from an early age practically ensured a "dismal" outcome.

There have been other adult outcome studies since then, with varying results. For example, Howlin et al. (2004) found that 12% of adults had "very good outcome" and another 10% "good outcome", with the majority (58%) having "poor" or "very poor" outcome. Billstedt et al. (2005) found that autistics diagnosed in 60s, 70s and 80s had worse outcome than previously reported, with only 3% achieving independence, and 78% having a "poor outcome."

A recent adult outcome study reports that half of the autistic adults had a good or fair outcome, and 46% had poor outcomes (Eaves & Ho, 2007). The authors indicate that "current young people had more opportunities" and thus better outcomes were expected. I would venture a guess that one of those opportunities was the opportunity not to be institutionalized.

Some factors in outcome, such as baseline IQ or symptom severity, are usually discussed in these types of outcome studies.

Szatmari et al. (1989) studied the outcome of "non-retarded" autistic adults, and found that 4 of 16 (25%), a "surprising number", had a very good outcome and could be considered "recovered." An interesting finding from this study was that symptom severity was not predictive of outcome.

Outcome studies generally use various standard measures to determine if an outcome is good or poor. Ruble & Dalrymple (1996) questions the traditional view of outcome and suggests that some good outcomes are sometimes "invisible" to traditional measures. It also found that the parents of autistic adults who were doing well had pushed for integration and mainstreaming.

You might have heard neurodiversity advocates promote the notion that "presuming competence" is beneficial. There is actually some evidentiary support for this if you look at Donohue et al. (2000), which is not autism specific, but is referred by Ivey (2007), a survey of teacher expectations of outcome in autism. The following is quoted from its summary.

Research shows that when the significant people in a child’s life do not believe that he or she has capability to achieve an outcome, it is unlikely that the outcome will be realized. For example, if a teacher feels that a student has
social obstacles, then their perceptions may increase the undesirable behavior and the student may see him or herself in that light (Donohue, Weinstein, Cowan, & Cowan, 2000).

The environmental factor that seems to be of interest to medical researchers is, of course, treatment. Unfortunately, there are no adult outcome studies that could tell us if modern treatments, particulary early intensive behavioral intervention (EIBI), are predictive of a good outcome. The evidence is rather ambiguous. To take an example, you have Howlin (1997) which tells us that "appropriately structured programmes for education and management in the early years can play a significant role in enhancing functioning in later life." But later the same author, in Howlin (2003), states that "despite claims to the contrary, there is little evidence that very early, intensive interventions can significantly alter the long-term course of the disorder." It would be of interest to know, for example, how the experimental group of Lovaas (1987) is doing, now in their 20s and 30s (even if the group was not representative) but unfortunately no one has taken the time to document these adult outcomes in the peer-reviewed literature thus far.

Loss of Label in Childhood

It seems obvious that the earlier the diagnosis, the harder it is to predict if the diagnosis will hold some years later. There are some studies that support this view, such as Turner et al. (2006) which found that only 88% of children with autism or PDD-NOS diagnoses at age 2 were found to be in the spectrum at age 9. See also Sutera et al. (2006) and Charman et al. (2005).

While loss of label in childhood is rare, it's obviously not as miraculous as some claim. A gap in the science is that nothing is known about the adult outcomes of autistic children who lose their label at a young age.

Speech Development

Turner et al. (2006) tells us that 88% of children diagnosed with autism or PDD-NOS at age 2 could demonstrate some functional language at age 9. However, only 32% were able to engage in a conversation.

Kobayashi & Murata (1998) found that 48% of a sample of 187 autistic adults had good or very good speech.

Speech delay has been found to be non-significant in autistic children with normal intelligence, i.e. their outcome appears to be no different to those with a diagnosis of Asperger's (Calhoun, 2001).

Institutionalization

It is important to realize that institutionalization of developmentally disabled persons has been in decline in recent decades, probably in large part due to the deinstitutionalization movement.

Krauss et al. (2005) reports that 63% of autistic adults did not live at home with their parents. Of those, the majority (73%) lived in a community residential programme. About 17% had a semi-independent living arrangement. Only 3% lived in an institutional setting.

This is consistent with the latest data from California DDS, where we find that at least 66% of adults in the system live at home or independently, and no more than 4% live in institutional care facilities (source).

Currently about 10 in 10,000 persons in California are registered with CDDS and do not live at home or independently. There is a slight downward trend in this proportion. I would estimate that autistic children diagnosed today in California have a relatively small chance (5-10%) of not living at home or independently as adults, due to the trend in institutionalization and the broadening of the spectrum. To put it in perspective, I think they have better odds of "recovering" than of being institutionalized.

Parental Beliefs

According to King et al. (2006), expected changes in parental worldviews over time include positive adaptations concerning views on life and disability, "and an appreciation of the positive contributions made by children to family members and society as a whole." I suspect not all parents undergo these worldview adaptations, however. Some will probably oppose acceptance to the bitter end.

34 comments:

  1. Joseph

    I really appreciate your putting this all together for us. Kudos:!

    ReplyDelete
  2. Hi,

    Well I know that a lot of parents of autistic children are woefully in denial. I attend the Asperger's Meetup in Orange County, California, and it seems like the parents don't want to come anywhere near the adult Aspies, they'd just like to conveniently forget that their kids are still going to be autistic after hitting age 18. I recently went to a Social Security presentation just to see what was going on, and heard the horror stories of "poor me, my kid RUINS MY LIFE", talking about putting 10 and 11 y/o kids on Disability. I am not unsympathetic to challenges that might come up, but I think if they stopped looking at their kids as diseased monsters, it would be better for both the child and parent.

    We're supposed to have a "Meet the Aspies" night to address the concept of adult autism with parents, to show that even at various levels of "functioning" we are still human.

    I blogged about this today on my LiveJournal as I'm about to go to a meeting tonight, training to mentor autistic kids, and the thing is, even kids who seem "low-functioning" because they're non-verbal, are not necessarily as "low-functioning" as one might think. There are various levels of "functioning". I think everyone has the right to a happy existence, and part of the happiness of existence is self-determination. The curebies may argue autistics are not capable of such a thing, but I was institutionalized and drugged with neuroleptics for several years, and now live independently and am going to be taking a course (from home) next year to find specialized employment. I am happier now that I have a label for what's going on with me, and I know there are many strengths associated with being autistic, not just deficits (and a lot of "deficits" are things that NTs find weird/inconvenient/uncomfortable). I speak from experience that long-term institutionalization does way more harm than good, as does shutting down a child with neuroleptics just for behaving "oddly".

    Here's a link to today's LJ entry:

    http://just-sigrun.livejournal.com/247202.html

    Thanks again :)

    ReplyDelete
  3. You tell parents whom you've never met and whose children you never met that what they saw with their own two eyes didn't actually happen becuase this study says it couldn't of.
    I know for a FACT that MANY parents testimonials are NOT accurate.
    I also know for a FACT that MANY of their testimonials ARE accurate.

    It's a shame that you all seem to be slaves to science...it has blinded you to what is right in front of you.
    But what's a real shame is that you are misleading parents. You guys don't mean to, it's just that you are all so misled.
    Now tell me that the timing of Jakes improvements is all coincidental to starting restrictive diets and MB12 shots.
    Just a coincidence.
    It would be funny if there werent so many kids who need restrictive diets, MB12 shots, and Glutatione.
    One day the science will be there and then finally you will be able to believe what was in front of you all along.
    If someone knocked on your door early in the morning and told you that your house was on fire would you say that what they said is anecdotal and wait for some sort of proof before you left the house?

    I would leave the house and then see if they were right.
    I put jake on restrictive diets and studied the results. same with MB12 and glutatione.
    the same with chelation and hbot.
    with chelation and hbot i studied him and saw no results so i promptly stopped.
    now, you really dont believe it when i say that i saw no results do you? how could you??? its anecdotal and proves nothing.
    I didnt see results though. but you arent allowed to believe me telling you that. You have to find a study that says you are allowed to believe me.

    ReplyDelete
  4. So Joseph writes (metaphorically, sort of...) that it's a well known phenomenon that pigs can fly. It's scientifically documented that at times, in a certain small percentage of pigs, that they can fly. Absolutely a known scientific fact, one that has been observed by hub bloggers and even by scientists.

    Phil comes along and responds. "How dare you say that farmers never see pigs fly? How DARE you act like science knows everything???? I know for a FACT that farmers have seen pigs fly!! You are insulting to the farmers, and me, by saying we never saw a pig fly following (after some period of time) injection of methylB12 and after putting the pigs on a restrictive diet. Of course, not all pigs fly on quackery derived methylB12 shots and quackery derived restrictive diets, but some do!"

    Right, Phil. No kidding. Autistic kids start talking. Autistic kids lose their diagnoses, it's just that the facts show that it's not the B12 (pushed by a scamming quack meister and a relative) and/or restrictive diets, pushed by all manner of true believers.

    When you understand science, even the basics, then you can criticize it. Right now your grasp is really poor. You have no "leg" to stand on in criticizing it. Not at all. You make yourself look dumb when you try.

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  5. I do not look dumb when i question science. I understand science very well and studies are NOT science. Science is far from perfect due to our lack of understanding of the mechanics of the body. But you really are missing the overall point.
    I really do feel that for the most part many of you have claimed a belief that biomedical intervention does not work and now take any data or evidence to the contrary and rather than trying to understand it with a heart that wants to know the truth, you try to destroy it in order to maintain your beliefs.
    I do have to question if it is more important to you all to be right or more important to help children.
    Many children do have a digestive issue. This is not exclusive to autism. When children do have digestive issues many times they are not absorbing the nutrients they need and vitamin b12 is a particularly difficult vitamin for the body to absorb.
    Jake did have a digestive problem. This is an autism issue. He had a digestive problem...plain and simple.
    To say he didn't would be very alarming if it came from an individual that isnt qualified to make a diagnosis of digestive disorders and if you are qualified i would wonder why you would say he didnt have a digestive issue without ever personally examining him. That would say a lot of your medical expertise...I dont think doctors should diagnose individuals without ever actually seeing them.
    So doesn't it stand to reason that if Jake had a stomach disorder that was causing a vitamin deficiency in him (esp. vit B12) that there would be symptoms of this deficiency?
    And would it be so hard to believe that if he suddenly were given this vitamin in a ready to use state in a large dose that some of those symptoms would suddenly disappear?
    Does that sound like an outrageous claim to any of you?
    I do videos on youtube and if you went to youtube and typed in Philcommander2 you would see them all come up. Look for the one that says "b12 before and after" or something like that.
    You will see that jake did not have the ability to bounce a ball due to not being able to focus in on the ball. I have many notes (before i ever heard of b12 shots) where i express the need to teach jake to be able to focus and hold his attention.
    There was NO CHANGE is jakes ability to maintain focus for a period of two years.
    Then on the third shot of MB12 (the sixth day of shots) suddenly it all disappeared...by months end it was 100% gone and has never been an issue sense. Jake suddenly gained an ability to pay attention and maintain focus and concentration that has never left. It hasn't improved because there is no need for it to improve, Jakes focus was perfect after one month of shots.
    Why is it hard to believe that Jake had a digestive disorder that didnt allow him to properly absorb nutrients such as vitamin b12 and that this deficiency caused symptoms that went away once the vitamin was administered to him?
    The studies that you quote...were those children all suffering from vitamin b12 deciciencies?
    That would be the only way to scientifically know if a child would improve when given the vitamin.
    If you all maintain that my story is just me imagining things then i can only conclude that you are not seeking the truth...you are only looking to maintain a belief that you will always hold no matter what any evidence contradicts.
    None of you are qualified to tell a parent that their child WILL NOT benefit from a vitamin given in a methalated form if you have not personally evaluated and tested that child to see if there is a deciciency in that vitamin.
    If you do then you are practicing poor science and quackery.

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  6. in my above comment i wrote "This is an autism issue" when refering to digestive issues. I meant to write "this is not an autism issue".

    ReplyDelete
  7. (not first anonymous)
    phil
    you are absolutely right. vitamin deficiency (often brought on by restrictive diet), gastrointestinal problems (seen a pediatric gastroenterologist?)and food allergies ARE NOT autism and therefore (brought to logical conclusion) cannot be used to treat/cure/whatever -autism
    so...what exactly was your issue with joseph's post?

    ReplyDelete
  8. Phil: If you feel that science and facts just get in the way, and you prefer to base your beliefs in anecdotes and testimonials, that's fine. Lots of people feel that way.

    I, for one, think that science is by far the best way to learn about reality. It produces actual results. If not for science, we would not be having this conversation and you would not be able to upload videos to YouTube.

    I really do feel that for the most part many of you have claimed a belief that biomedical intervention does not work and now take any data or evidence to the contrary and rather than trying to understand it with a heart that wants to know the truth, you try to destroy it in order to maintain your beliefs.

    What data and evidence? Noting that kids have improved is not data. As I show in the post, autistic kids have been improving ever since Kanner defined the syndrome. So what kind of data is this that tells me the obvious?

    Give me replicated double-blind studies. I assure you, when the science is clear that a treatment works, I won't argue that it doesn't work.

    On the flip-side, when the science provides good evidence that, say, Me-B12 doesn't work (as it has) refusing to even consider the possibility that it in fact does not work, is quite closed-minded in my opinion.

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  9. I have no difficulty believing that *some* autistic children have digestive issues. For Pete's sake, some NT's have digestive issues! That said, the difficulty I see is that some parents of autistics continue on, year after year after year, subjecting their children to dubious treatments, all in the hope that *evennnntttuuaalllyyyyy*, years from now, Child will be "miraculously cured" by Said Dubious Treatments--all because a group of doctors has said it will work, given enough time. Phil, you said your child improved after just a few shots. Great! That's fantastic! You tried something and it worked. Still, that doesn't mean that shots of any kind will work for all autistics. (I realize you didn't claim that, anyway.) I guess I just wish that so many parents weren't manipulated into trying every idea under the sun, with very little research into them and a panicky lack of common sense.

    ReplyDelete
  10. Good, informative summary. I wish someone would follow up on the Lovaas group, too. I once read a forum post by someone who knew a guy who had been in the Lovaas group. She said he had the worst case of PTSD she had ever seen. That doesn't surprise me...

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  11. Abfh: I've heard some things too. I think it's strange that something as hyped-up as Lovaas ABA has not had an adult outcome follow-up. And I'd like to see what happened to all 19 in the experimental group. I'd like to see how it compares to the most recent adult outcome study which finds half of autistics had either good or fair outcome (without ABA I'm sure).

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  12. Thank you Joseph. Very imformative and well put together.

    And some interesting comments!!

    ReplyDelete
  13. passionlessDrone10/11/2007 9:26 AM

    Hi Joseph -

    "On the flip-side, when the science provides good evidence that, say, Me-B12 doesn't work (as it has) refusing to even consider the possibility that it in fact does not work, is quite closed-minded in my opinion."

    Can you provide some references on this? I had trouble finding any good studies one way or the other on Methylcobalamin and autism in pubmed.

    I did find a small study showing improvements using b12 shots here. Small sample and other problems.

    I found another study underway that thus far had not shown group level responses, but some children did show improvements.

    Take care!

    - pD

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  14. Hi pD. There has only been one double-blind study on Me-B12 (I believe ongoing) with preliminary results not showing differences with placebo. See here.

    The study you link is obviously non-controlled, so it's not surprising they find the group improved. I'm not sure what non-controlled studies of autism treatments can really tell us, to be honest.

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  15. Can being in a residential treatment center for two years and two months even without being drugged be considered institutionalization? From age 14 to age 16 I was in such a place, and am still not sure whether being there helped me or whether it closed many doors. This was back in the 70's when many with autism were considered "emotionally disturbed", and so the treatment focused on changing behaviors to fit in better. Could this experience have taken away my initiative? One thing I did learn was that there was no use complaining about anything there.

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  16. An additional study on age 2 diagnoses and their stability has been brought to my attention: Kleinman, et al. (2007). In this case they find that 19% moved off the spectrum by age 3.5 to 7.

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  17. Polyrhythmia: I'm not sure how to answer your question. There's little data on it. Kanner is basically the only one who apparently cared about the institutionalization factor, although I can report that Lovaas also noted that institutionalized autistic children regressed. He thought it was because they were not receiving ABA (seriously).

    The autistics who had a "dismal" outcome according to Kanner (1971) had actually been institutionalized most of their lives. They ended up in situations where they were drugged, restrained and so forth.

    One woman who was institutionalized later (Elaine C.), at the age of 18, fared considerably better.

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  18. The reality of some of the studies is very misleading in today’s terms. Studies prior to or around 1994 are using DSM-III criteria for autism, compared to the more liberal diagnosis criteria in the DSM-IV. Most likely mis-diagnosis in the DSM-III era put the “lower” functioning individuals in a MR diagnosis, rather then an ASD diagnosis. Most likely making the adult autistics sited in the studies the “Cherries” of the population. So comparisons to today’s diagnosed ASD individuals would be Cherries to Elephants comparison.

    ReplyDelete
  19. Chuck: That's an important caveat that I probably considered adding to the post, but became one of many things I did not include.

    Kanner autistics, for one, are not the same as today's autistics. They were probably "higher functioning" than many kids diagnosed today in many regards; and perhaps in other ways they were "more autistic" (not sure how else to explain it).

    But then many kids diagnosed today are pretty close to typical.

    So the results of outcome studies do not necessarily apply to different times and different geographies even. That's a limitation of this kind of data. However, some of the predictors might still be generally applicable.

    The latest adult outcome study from Canada might be comparable to a Lovaas adult outcome, though. The timeframe would be similar and it's Canada vs. the US (pretty close).

    ReplyDelete
  20. Phil, your ignorance is showing.

    Generic "digestive problems" do not (say it with me) "do not cause problems with absortion of B12."

    A specific problem causes the ineffecient absorbtion of B12. You kid was not diagnosed with this problem, was he. That's right. He was not diagnosed with a lack of intrinsic factor. If your kid actually had this problem he would have been very sick, he'd have pernicious anemia

    The symptoms are serious, the disease is serious.
    Loss of appetite
    Diarrhea
    Numbness and tingling of hands and feet
    Paleness
    Shortness of breath
    Fatigue
    Weakness
    Sore mouth and tongue
    Confusion or change in mental status in severe or advanced cases

    I realize that you suffer from confusion and don't understand science and think you do, but that doesn't mean you have pernicious anemia unless you are diagnosed by a competent doctor.

    What you got was a head filled with nonsense by way of quacks, and you in turn are filling other people's heads with the same potentially dangerous nonsense, and your ego is so ridiculously large you can't conceive that you could be that wrong about what you saw.

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  21. Citation for the list of symptoms of pernicious anemia

    here.

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  22. anonymous 1,
    I like your name, shows courage to post your real name...thats an odd last name you got there (1).
    anyways, i am not ignorant of anything...you amaze me with your ability to tell me what i did see in my child and what i didnt see in my child.
    That is my problem with so many of the anti biomedical groups.

    First of all you really don't know about digestive issues so please dont try and make it look like you do. Cutting and pasting symptoms from a google search does not impress me.
    I also enjoy your politeness...I obviously incite some sort of passion in you.
    The problem I have with so many Anti Biomed people is that they role out these studies that dont prove ONE DAMN THING and then use them to declare to parents that we did not see what we saw in our children.
    I notice that nobody ever disagrees with me when i say that i saw no results from hbot or chelation.
    Think about that...
    When what i say i saw agrees with you all you say "yep, thats what we are talking about" but when what i say i saw disagrees with you then you say "you imagined it" or it was coincidence.
    The anti biomed crowd really are a pathetic bunch. You guys really are.
    And the truth is that not one of you can ever admit you are wrong because then you lose membership to your community.
    I have seen this over and over...people contacting me offline to let me know that they agree with me but cant post it on blogs or messageboards because they are attacked.
    What a group you guys are.
    anyways I'm done here...I thought i might find some with an open mind but as long as people tell me that i imagined what i saw i see no point in discussing this with them.
    I will tell you what its like...Its like if one of you had a problem with your car, then you did something on your own to fix it, then you had someone a thousand miles away say to you that what you did to fix your car actually didnt do anything at all and if the car started to run properly after you fixed it then it was coincidence.
    Yet that person a thousand miles away never saw your car and wasnt there for the before and after and ARE NOT MECHANICS!!!
    none of you people are qualified to diagnose children with digestive disorders or malabsorbtion issues. and if you are then you must EXAMINE them.
    none of you are qualified and none of you has ever examined my child before or after.
    But you all just KNOW you are right because you have a study!!!
    All I know is that parents call me on the phone and i tell them they should try eliminating sugar and dairy over a months period of time. They do this then call me back and say its AMAZING the results they have seen in a matter of a few weeks.
    Sageyrudman is the latest...she did a thankyou video to me.
    There have been many others.
    I know I am being positive and making a difference in kids lives...you guys are all just destroying rather than building.
    I could explain to you how you all should be looking into claims with a heart of optimism and skepticism at the same time...but all you are are destroyers.
    And the ONLY reason you do this is because parents have used the word "cure" or "recover" in association with these interventions.
    Your battle is against people who use the word cure and you are instantly against anything they do.
    If i said i cured my sons autism with teddy bears you would instantly have videos and blogs telling of the dangers of teddy bears and have studies that link them to suffocation and choking of children and then you would write in blogs that how in your household you dont allow ANY stuffed animals and wont play any songs by Elvis because he sang the song "teddy bear" and that theodore roosevelt was a communist.
    All because the word "cure" was used.
    You people really got issues...I have given advice to many parents that have helped their children in the course of less than a month.
    But of course they were ALL just coincidence.
    You people do amaze me with you ability to live in denial.
    Oh well...May God bless all of your children because they are gonna need it.
    Take care one and all and it's been a real interesting conversation with you all...it just confirms my belief that you oppose these methods for all the wrong reasons and that conversing with you is sadly a waste of time.
    I know you all Love me though...and that is what keeps me going!
    Phil

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  23. I think trying to argue with anecdote-based "doctors" is pointless. Phil can carry on believing what he does, and there's no law against him giving out unqualified medical advise.

    It's really parent's choice if they want to believe in magic potions, anecdotes and testimonials, instead of consulting with evidence-based doctors, or say, follow Dr. Gernsbacher's advise, which is based on randomized trials.

    One day there will be an outcome study comparing parental approaches. I hope it looks into kidney health among other things. Even today, the general trend in parental views is well known, but there are always stubborn parents who think they are too smart to fall for the placebo effect.

    It's important to remember that parents who promote acceptance/neurodiversity also have anecdotes. We just aren't religious about them.

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  24. Joseph, one day you will understand the harm you have had on autistic children.
    I love children...autistic and Neurotypical.
    You my man love only your beliefs and dont give one damn about autistic children.
    You are only worried about how many people read your blogs.
    May God have mercy on your soul.
    Phil

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  25. Whatever Phil. I'm sure I've done a lot of harm by, for example, bringing attention to the biggest risk factor of a dismal outcome in autism ever found.

    FYI, I would not be blogging about autism if I didn't have an autistic child, and were not concerned about how the world views autistics. Some day you might see this is an important consideration.

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  26. Someone's apparently been reading The Woo Handbook. (Good one Skeptico).

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  27. So, when one goes to a blog that focuses on science and logic, how is it a good idea to start offering ad hominem arguments?

    Is the purpose to try to talk others into seeing your point of view? If so, is it likely that the insults will be more convincing than impersonal, rationale arguments?

    Maybe the purpose is to vent? If so, maybe there better ways to accomplish this... maybe yoga?

    I think that no matter what the case is, if someone is going to visit a skeptical blog, and propose that research isn't science, then they have a lot of explaining to do. I doubt that accusations of the spiritual or intelletual inferiority of the opponent is going to do the trick.

    I guess my point is, if you think you have a better argument, then you are welcome to show it. If not then surely there is a better use for your time.

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  28. Thanks Interverbal. Phil was obviously quite insulting with his last message, and his baseless assertions about me.

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  29. "Phil was obviously quite insulting with his last message, and his baseless assertions about me."

    There is an unspoken rule in these sort of debates.

    If you have 'em on the sience, point out the science.

    If you have them on logic, show how the logic is flawed.

    If you have them on neither, start screaming that they are somehow personally flawed. It gets boring real quick, doesn't it?

    I think that the dissenters, often have the best and most valuable things to contribute to a serious discussion. But even if a person does have these things to offer, we would never know it, if select to use the personal baloney instead of a real argument.

    ReplyDelete
  30. All I did was post a number of facts supported by research on the web. For doing this, I'm hurting autistic kids according to Phil. Apparently he would prefer that the autism community stay in the dark about how autistic kids develop in average, what the reported adult outcomes are, what some risk factors for a bad outcome might be, etc.

    He shows up with a largely off-topic rant about how he's immune to the placebo effect and coincidence. He cannot accept that some of us are skeptical of his anecdote-based assertions.

    At no point did he address the factual accuracy of the post or any missing information from the post, unlike Chuck, for example, who did bring up an important caveat.

    Then he attacks people's characters, and says we're hurting kids, that we're probably going to hell - the usual stuff. The only thing he hasn't called us yet is Pharma Shills. His behavior has been rather immature.

    ReplyDelete
  31. I have an autistic child and we do take him to a doctor simply so that we can help him feel better.

    He DOES have problems with his gut, but this is not autism. Our son will always be autistic, and we love him immensely just the way he is.

    Would we like him to talk more, absolutely! But all we've got is time. He'll make the progress he's supposed to make at his own pace.

    I offer this information because your scientific approach is very reassuring to me. I'm glad there are scientists taking a look at this to see if they can understand autism better. It may help all of us NTs understand autistics more and have some more empathy for their unique approach to things.

    I know I've learned alot from my son and he's only 5!

    ReplyDelete
  32. Thanks Jason. Here's a list of other science-based autism blogs for you:

    Interverbal
    Prometheus
    Autism Diva
    Michelle Dawson
    DoC
    NotMercury

    Also see LB/RB which is a mix of everything, and the most popular autism blog on the web by far.

    For an aggregate of the best autism blogs on the web, go to the Autism Hub.

    ReplyDelete
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