Saturday, April 04, 2009

JB Handley - Poorly Informed or Outright Liar?

Last night I was changing the channel and I stumbled upon Larry King Live (transcript here.) It must have been only a couple of minutes before they switched to Anderson Cooper. During that time, I got to watch JB Handley make a monumentally false statement. I'll go over several statements he made during the show, but first I want to address the one that caught my attention.
Did you see the January study from UC Davis using California's numbers that said unequivocally there's been a clear rise, it's not do [sic] to diagnostic substitution.

Handley is referring to Hertz-Picciotto & Delwiche (2009). This is what the conclusions of the paper actually said:
Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

That's not an unequivocal determination of a clear rise, by any stretch of the imagination. Besides, that paper was surprisingly poor. None of the figures used by the paper approach anything that might be called certain or accurate. One of the artifacts the paper fails to take into account is probably the most pertinent artifact of all: awareness. A summary of all the very serious problems the paper had can be found at the end of this post.

Next statement:
We're looking for something that's caused this epidemic. It went from one in 10,000 in the 1970s to less than one in 100 today in many states.


The first epidemiological study of autism was Lotter (1966). It finds a prevalence of 4.5 in 10,000. That was in the UK. Wing et al. (1976) finds the same prevalence in the US. Mike Stanton has a good summary of historical prevalence studies. I don't think this is the first time I've corrected Handley and others about this.

I happen to have read Lotter (1966). What they called 'autism' back then is very different to, say, what the DSM-IV calls 'autism' today. It's apples and oranges. Here's a excerpt from Lotter (1966) to give you an idea:
The two categories of the Creak criteria concerning a "'pathological preoccupation with particular objects" and "an insistence on the preservation of sameness" were therefore combined.

These are similar to criteria C2 and C4 of the DSM-IV, but in the DSM-IV they are basically optional (only 1 item from C is required.)

The paper explains they located 666 out of 75,930 (88 in 10,000) children who had "certain kinds of behaviour" that couldn't be simply characterized as "backwardness." They initially excluded 87% from this group, based on the opinions of two judges familiar with the syndrome of autism.

They ended up with 32 autistic children, 22 (68.8%) of whom had IQs under 55, another 5 (15.6%) with IQs between 55 and 79, and the remaining 5 (15.6%) with an IQ of 80 or above. Again, this is quite different to what we call 'autism' today.

Moving on:

I want to talk about this issue of autism prevalence. It's going to be shocking for parents to learn that the CDC and the AAP don't actually acknowledge that there's been a real rise in autism cases. Larry, the Department of Education in 1992, 16,000 kids were getting autism services. Today 225,000. That means in 1992, they were missing 93 percent of kids with autism. Where are all the adults with autism? They don't exist.


Adults with autism don't exist? That's not only insulting and potentially damaging to the quality of life of autistic adults; it's completely wrong. It becomes embarrassingly wrong every time someone goes and surveys adults to see if autism can be found among them.

Again, I doubt this is the first time this has been pointed out to JB Handley.

Heck, Handley's Age of Autism has a token autistic adult who contributes to that blog from time to time.

His Special Education figures are essentially correct, except the year is 1993, not 1992. What he fails to mention is that 489,000 students were receiving services under the mental retardation category in 1993, and only 425,000 as of 2007.

Let's consider Specific Learning Disability and MR together, and let's also consider population growth. The prevalence of both categories combined was 645 in 10,000 in 1993, and 584 in 10,000 as of 2007 for 6 to 17 year olds. That's a drop of 61 in 10,000 – more than enough to cover the increase in the administrative prevalence of autism.

Is it possible that JB Handley has never heard of diagnostic substitution in IDEA? Doubtful.

Those are all the statements I will address in this post. Readers are welcome to point out other errors, if any.

My impression is that JB Handley is either completely misinformed about some basic facts having to do with autism epidemiology, or he decided to go on Larry King to simply lie with a straight face.

To conclude, here's some advice for Larry King: In the future, if you want to discuss the "autism epidemic," you would do well to invite recognized experts on the matter, such as Roy Richard Grinker or Eric Fombonne.

41 comments:

  1. Mr. Handley does not want to discuss autism logically, he wants to use his money and his "muscle" to bully people into thinking his way.
    Geesh, I am steaming mad at the "no adults with autism" comment...

    Jenny McCarthy, JB Handley, Jim Carrey, and Dr. Kartzinel were not only hard to watch, they continued to tell lies about autism.

    If you read comments today, there are many people who found them not credible.

    Jeanette

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  2. How To Talk Like JB Handley...

    Let's repeat that actual conclusion (from Hertz-Picciotto et al. 2009) first

    Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

    If you're JB Handley, how do you represent this on Larry King?

    1. Use the word "unequivocally" even though there is nothing with stated completeness or certainty in the conclusion of the study.

    "do not fully explain the observed increases"

    Transforms nicely to "said unequivocally". Hey, opposite meanings aren't so hard to insert.


    2. Attribute something to the study that was not mentioned at all.

    "Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases"

    Voila! This whole piece magically becomes "diagnostic substitution". See how easy this is?


    3. Don't mention what the study did not look at.

    "Other artifacts have yet to be quantified,"

    Yikes, better skip that one, saying something about it would detract from "unequivocally" anyway. Easy enough.


    4. Substitute the word "clear" for "unclear".

    "the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear."

    Let's say "clear rise". There, that sounds better.


    Now let's put it all together.

    "Did you see the January study from UC Davis using California's numbers that said unequivocally there's been a clear rise, it's not due to diagnostic substitution?"

    To assume that JB Handley deliberately misrepresented this study with his question on Larry King Live would ignore another possibility as the title of your post and comment aptly indicates:

    "My impression is that JB Handley is either completely misinformed about some basic facts having to do with autism epidemiology, or he decided to go on Larry King to simply lie with a straight face."

    It is possible that he has not actually read the study's conclusion. It's also possible that he did read it, but doesn't understand it.

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  3. Small clarification about Wing et al. (1976)...

    That's a comparative survey of studies from a few countries, not only the US. The studies it looks at find a prevalence of 4 to 5 in 10,000.

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  4. Yeah sure Joseph, you just happened to stumble upon Larry King and JB Handley. That comment reminds me of sandwich I ate a lot as a kid: Baloney with lots of mustard.

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  5. No Harold, I thought it was crucial for me to make something up about my TV viewing habits.

    Got any other irrelevant speculation you'd like to share?

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  6. Alas, the fetid tide of Mr. Doherty's ignorance and boobery never recedes. I've never understood why someone would so willingly, and publicly, make a continuous and complete asshat of themselves. Perhaps self-loathing?

    Joseph, you ought to give some consideration to doing a "best of Mr. Doherty from around the web" post.

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  7. Not worth it; but I gotta say, the quality of Harold's obvious trolling has plummetted to levels that are simply pitiful.

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  8. It's comment like Harolds last one that make me believe he is/has undiagnosed aspergers.

    Most people would have taken the opening sentence as a preamble, as most people are not going to say "I saw the advert and didn't fancy it, but as I had my laundry out of the way and the cat was in/out for the night, and there was nothing better on that I wasn't already recording on sky+ anyway - I decided to watch it during the gap between Ice Road Truckers and Extreme Logging."

    Harold, of course, takes it as a literal claim.

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  9. Poor Harold. He's lost all credibility, and his hero is a liar.

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  10. Sorry, somehow I forgot to repaste my original point.

    Anon@11.05.

    Indeed. One of the major issues I have with the acceptance of the Hertz-Picciotto study, is that they are only accepting the bit that could possibly just might look like it may eventually somehow someday support thier arguement.

    By accepting it, they've accepted that a huge chunk of the increase is diagnostics and increase in services, yet none of their supporters are up in arms about them throwing out over half of the original vaccines=autism arguement.

    Methinks they just read the bit that could be made to look like it agreed with them.

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  11. Wait, Larry King invited the same round of twats again?
    That's quite a thing, even for a guy who has a love affair with Sylvia Brown.

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  12. And I really did miss most of the show. I had read over at RI that Jenny McCarthy was going to be on, but I really wasn't interested in watching. I didn't even remember it.

    My wife was actually changing the channel. I immediately said something like 'ah, it's that show - I'm not interested' but my wife (who is basically unaware of non-local autism politics) said 'it's something about autism.' Then I pointed out to her that the guy in the lower left of the screen is JB Handley, who doesn't know what he's talking about, and so forth. It was very upsetting when he started to spout that obvious falsehood.

    Unfortunately, the doctor opposite to him was not able to address that comment very well, and he didn't have time. They switched to AC 360. There was breaking news about a shooting.

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  13. Hello Joesph and Everyone

    I'm Cube Demon and I am a recently diagonised aspie and I am devoted to help taking people like John Best Jr. and Handley down.

    http://cubedemon.blogspot.com/

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  14. Thanks for the heads up, Demon.

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  15. On the Larry King Live show on Sat. Dr. Max Witznetzer did na fairly good job of addressing Handley's accusational presentation of supposed evidence. Handley brought the UC Davis study up and asked Dr. Witznitzer if he was familiar with it, to which the Dr. replied "Yes I am" he then proceeded to present the misrepresentation of that Study by Handley.

    Urgggg...!!!
    discussing scientific data at a vigilante group meeting leaves something to be desired.

    Uncle Dave

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  16. "That's not an unequivocal determination of a clear rise, by any stretch of the imagination."

    Okay Joseph, yes it does not say there was a "clear rise" but does say "younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases," does not explain it. In other words, it's basically saying there was a clear rise, unless you have some other alternative explanation that is not mentioned here, though to my knowledge the alleged factors that were discounted are the usual explanations NDs give for the growth in autism.

    "Larry, the Department of Education in 1992, 16,000 kids were getting autism services."

    Of course he's not saying we "don't exist," the average age of diagnosis for autism was over the age of four. He's clearly acknowledging there that we "exist," just that there weren't nearly as many of us stricken with this disorder then as there are now. What he means is all the excess adults that are supposedly autistic not to mention the fantasized hundreds of thousands of people my age born right before the cluster that are supposedly my age but have never been diagnosed. I was rediagnosed with Aspergers in 1998 after being prognosed for a PDD in 1992 (yes, such a thing as PDD existed before the DSM-IV). I'm mildly autstic and was born right before the cluster, and yet I'm still counted as having an ASD. Claims suggested by people such as Shattuck and Fombonne that there are all these hundreds of thousands of people around my age stricken with my ASD if not worse are utter garbage, and I am living proof of that.

    "Is it possible that JB Handley has never heard of diagnostic substitution in IDEA? Doubtful."

    It's also doubtful that he's never heard of Dr. Craig Newschaffer, who stomped Shattuck's "diagnostic substitution" hypothesis into the ground.
    http://pediatrics.aappublications.org/cgi/content/extract/117/4/1436

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  17. In other words, it's basically saying there was a clear rise, unless you have some other alternative explanation that is not mentioned here

    You mean, something like "other artifacts" that "have yet to be quantified"?

    More specifically, artifacts like awareness, mentioned in the paper, but not evaluated.

    It's also doubtful that he's never heard of Dr. Craig Newschaffer, who stomped Shattuck's "diagnostic substitution" hypothesis into the ground.

    That's false, Jake. There's a response from Shattuck to Newschaffer which you can find here. An excerpt:

    "In fact, the magnitude of association between growing autism prevalence and the corresponding decrease in the prevalence of other categories is quite substantial. One of the ways to evaluate the adequacy of a model such as this is to compare observed values against values predicted by the model. For instance, the 2003 autism prevalence predicted by the mental retardation (MR) model in Table 2 of the article is 2.9 per 1000 (based on analysis of the residuals), whereas the actual observed autism prevalence in the same year was 3.1 per 1000, representing a very close match between observed and predicted outcomes."

    And:

    "This indicates that, in the aggregate, total decline in MR prevalence could have offset the total increase in autism prevalence almost 1-for-1."

    Beyond what has been published on the subject, one can look directly at IDEA data and see that indeed the special education population has not grown beyond what would be expected from general population growth, that MR has declined and that specific learning disability has declined.

    What explains the decline in MR and specific learning disability, which are not minor declines?

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  18. PLEASE, PLEASE, look at the deficiency of vitamin D3, DHA omega-3 fatty acid, and vitamin B12 during both pregnancy and early childhood. I am investigating vitamin D in children who develop cancer, because they develop it at the essentially the same age in each child. Could it be that their nutrition during pregnancy is depleted by a certain age, and they then are unable to continue to grow naturally. That type of actions happens with iron sufficiency/deficiency in children.

    I agree that autisim is a world wide problem, but so is VITAMIN D3 DEFICIENCY. It has been identified as a pandemic. And YES, since it is not really a vitamin, and we are afraid of the sun, we are seeing a large number of diseases resulting from vitamin D deficiencies.

    PLEASE start looking in a different direction. We have "dug the hole of vaccines" long enough. It is time to "dig" in another direction.

    Lenore S. Hodges, PhD, RD, LD, Outpatient Oncology Dietitian, M. D. Anderson Cancer Center, Orlando, FL 407-252-0273.

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  19. Funny story...

    I work with autistic children in Minnesota and JB Handley called the parent of a child I work with the other day. He proposed paying her in excess of $10,000 to begin spreading the word that vaccines are causing autism and people in her community (she is not caucasian) should refuse any and all vaccinations. To this mother, $10,000 could go a very long way and I was unbelievably surprised to hear her response. She said absolutely not. Put your money where your mouth is and fund real, scientific research studies. Well, Mr. Handley did not appreciate this response. He quickly sent her a very harsh email criticizing her position. I couldn't believe the tactics (using money to manipulate a vulnerable population) he attempted to use to spread such bunk. I guess I am more naive than I thought, but I was quite shocked. Needless to say, I have gained even more respect for the mother I work with.

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  20. Interesting comment by Josh there. Shows what kinda of a piece of shit J.B. Handjob is!

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  21. wow, I understand eveyones need to lash out at JB Handley, I probably would too if I had never met him or seen his passion for what he does. He is angry that medical insitutions and pharm companies rule many of our systems. If you follow the heard and believe everyone in authority, go right ahead, but if you question authority and educate yourself, you might find yourself questioning vaccines as well. And we all know, anyone can turn around any study or any statement to fit their needs. And no one mentioned when JB completely stopped one of the doctors in her tracks by asking why European countries don't vaccinate like we (Americans) do. SHe tried to say it was because vaccinations are expensive . . . but Europe has just as much money as we do, so that didnt exactly fly. But next time any of YOU are on Larry King, I will make sure to tune in . . .

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  22. "It's comment like Harolds last one that make me believe he is/has undiagnosed aspergers."

    Um... fuck :/

    I hope not!

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  23. @Marie: This is not about lashing out at Handley. This is about pointing out factual errors and/or misrepresentations he made on a widely broadcast TV show. If you have something to add to the discussion on the factual accuracy of his claims, please go ahead. If not, I should let you know that emotion-based appeals and fact-free assertions carry zero weight around here.

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  24. "wow, I understand eveyones need to lash out at JB Handley, I probably would too if I had never met him or seen his passion for what he does."

    Irrelevant. And smarmy. One doesn't have to meet someone in order to know whether or not one is against their stance on any given issue (you've never met Saddam Hussein, but I dare say you would have though of him as a complete bastard when he was alive, right?); and passion is neither here nor there in the determination of whether or not someone's actions are wise/stupid, good/evil, science-based/bullshit-based, etc (the Talliban were passionate, but I'm sure you'd agree that they weren't amongst the wisest, best and most science-based of ruling governments).

    "He is angry that medical insitutions and pharm companies rule many of our systems."

    No. He's angry because he wants to lash out at them for making his 'normal' child autistic with mercury in a vaccine that it wasn't even in!

    "If you follow the heard and believe everyone in authority, go right ahead,"

    This isn't about following authority blindly... although I wouldn't expect you to have noticed that. Carry on...

    "... but if you question authority and educate yourself,"

    Presumptious, aren't you? Dunno about Joseph here, but I'm very well-educated (B. A.-equivalence in applicable psychology with mathematical sciences, archaeology and Finnish language; M. Ed. in the psychology of special education, with a specialist focus on autism). My ex-wife has just completed her thesis for her M. Ed. - her second master's degree (she also has an MSc in plant genetics, which followed a BSc in biochemistry and plant physiology). Larry Arnold FRSA has the equivalent of a B. A. in media studies with autism studies, followed by a post-graduate certificate in special education (specialising in autism), and is currently working on his Ph. D. - also in autism studies. All three of us are autistic, all three of us are educated, and all three of us are totally unconvinced that JB Handjob is using his education wisely at all.

    "you might find yourself questioning vaccines as well."

    Not really.

    "And we all know, anyone can turn around any study or any statement to fit their needs."

    Not someone who knows what a study is about. It tends to be those who do not know what a study is about, or how to read one (and especially don't know how to DO one) who 'turn around any study or statement to fit their own needs'. Want an example? You've met one, so it seems!

    "And no one mentioned when JB completely stopped one of the doctors in her tracks by asking why European countries don't vaccinate like we (Americans) do."

    Stopping a medic in their tracks is no guarantee of 'brilliance', trust me!

    "SHe tried to say it was because vaccinations are expensive . . ."

    Ever thought that she may not have been au fait with European policy on vaccines? An American medical practitioner might not be up on what happens in European countries. Most European medical practitioners don't know about how their colleagues in the US implement policy.

    "but Europe has just as much money as we do, so that didnt exactly fly."

    So what? You're an expert on comparative international health care policy all of a sudden? Might not fly for those who have an agenda, but could well have been a reasonable quess on her part, given what I've said above. Can you prove that Europe has as much money as the US has? Because, if you can't, the dodgy guess wasn't the medic's, I can assure you.

    "But next time any of YOU are on Larry King, I will make sure to tune in . . ."

    Who'd want to go on Larry bloody King's programme? That's entertainment, not education. It isn't even what one might call 'edu-tainment'. Shows like that are not about the quality of information as much as they're about the number of laughs they can generate in the studio and home audiences and the amount of advertising revenue that those laughs help them to collect.

    The day that JB Handjob says anything useful, we'll be sure to acknowledge it. But we're not holding our collective breath.

    Like Joseph says, this isn't about lashing out at Handley; it's about this constant stream of emotion-laden-but-factually-bereft bullshit that he sees fit to push out all the bloody time, and that people seem to be SO willing to follow without questioning it. As a partial result of that bullshit, two autistic kids are needlessly dead and that sort of result cannot be ignored.

    No, Marie. We're not lashing out at Handjob. We're not happy with him at all. He talks bollocks.

    When bollocks takes the place of proper science, seriously unnecessary things happen. Do you not think that THAT is worth lashing out at?

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  25. Yeah, the stuff about questioning authority is nonsense. Anyone who follows this blog knows that I believe data and statistics. I pay attention to what authorities have to say and the arguments people put forth, but if data contradicts authority, I go with data every time.

    It was also pretentious to assume that I don't question vaccines because I haven't studied the matter enough. It's difficult to put into words how laughable that is.

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  26. "Yeah, the stuff about questioning authority is nonsense."

    It's one thing to sensibly question authority, but that requires that there is a valid reason to do so. Blindly questioning authority is at best an act of stupidity. At worst, it's an act of treason.

    "Anyone who follows this blog knows that I believe data and statistics."

    And I'm the same. I also have to see a mechanism by which a correlation can be legitimately read as a causality. I also have to see evidence that someone's thought about the conditions under which the correlation and causality are correct AND those under which they aren't. And more. A study needs to be able to account for as much as is possible, and then has to 'fess up' on what it cannot account for (possibly suggesting ideas on how that might be examined by any replications). Quite many studies don't do this.

    "I pay attention to what authorities have to say and the arguments people put forth, but if data contradicts authority, I go with data every time."

    Same here.

    "It was also pretentious to assume that I don't question vaccines because I haven't studied the matter enough."

    Not pretentious, Joseph: it was presumptuous ;)

    What was pretentious was the idea that - because of meeting Handjob and because of having 'seen his passion for what he does' - one might have more of an insight into how right he is. As was the idea the commentator was herself any authority (the whole "next time any of YOU are on Larry King, I will make sure to tune in" thing at the end, which assumes a sense of authority for which there is no basis).

    "It's difficult to put into words how laughable that is."

    It is. If we could do it, though, we'd fucking clean up brilliantly in the stand-up comedy market!

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  27. Josh...

    I keep coming back to this comment of yours.

    "Funny story..."

    I'd go as far as to say interesting.

    "I work with autistic children in Minnesota and JB Handley called the parent of a child I work with the other day."

    How'd he get the number? One of those things that sells personal information?

    "He proposed paying her in excess of $10,000 to begin spreading the word that vaccines are causing autism and people in her community (she is not caucasian) should refuse any and all vaccinations."

    Bit of a thing to ask, no?

    "To this mother, $10,000 could go a very long way and I was unbelievably surprised to hear her response."

    It would go a long way for many people...

    "She said absolutely not."

    Good on her!

    "Put your money where your mouth is and fund real, scientific research studies."

    Which is what's needed...

    "Well, Mr. Handley did not appreciate this response. He quickly sent her a very harsh email criticizing her position."

    Knowing what his style is, I wouldn't be surprised....

    "I couldn't believe the tactics (using money to manipulate a vulnerable population) he attempted to use to spread such bunk."

    If this is what he's doing, then yeh - this is very unethical.

    "I guess I am more naive than I thought, but I was quite shocked. Needless to say, I have gained even more respect for the mother I work with."

    Certainly deserves everyone's respect for telling Handjob to bugger off.

    I'd want to hear more about other people's experiences of this. Is this a one off? Or is this JBH's recruitment strategy?

    Sorry, Josh... no disrespect but I'm holding this as apocryphal until other stuff comes forth (or not). However, it's certainly not outwith what I'd expect of him, and it makes me wonder how he gets his Rescue Angels. And that might answer questions about various people's activities.

    Are there any more instances of this....?

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  28. I've heard of a claim similar to Josh's. Maybe it was him who posted it elsewhere?

    What I'd suggest to Josh is to try to have the person making the original claim to write about it herself. Perhaps she could produce the alleged emails and so on.

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  29. So, you guys think that it is not true that we have now more autism cases than 10, 20 30 years ago. what do you think about this article?

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  30. @Maryna: Your link is broken.

    I've studied the data and I've read several papers on the matter. There are no clear indications of a true rise in autism rates.

    A couple of posts I've written on this:

    High Prevalence of Autism in Adults.

    No Autism Epidemic: An Update.

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  31. Sorry, the article is here. I am not much into numbers. I prefer my personal observation. Low functioning autism in children like my son is difficult to miss. It also has certain characteristics specific to autism and not present in other forms of mental retardation like repetitive behaviours, obsession with specific objects, that would not be missed by gossip loving, story telling, village people from village I was born at in 1963. My natural story teller father was born in 1913 and grew up in tavern my grandparents owned. He new every family in 6 km radius of of our home for generations. He had great memory and a lot of tales to tell, and they would sometimes include stories about mentally challenged people since it was common in our area mostly due to very poor nutrition. Non of those people resembled an autistic personality. That was before the time "undesirables" with peasant background were being tucked away in institutions.

    Thorough my childhood my parents rented our house to children summer camps - there would be about 200 kids (30 to 40 at once ) and their caretakers staying in our home for about two to three weeks at the time every year. My parents were doing it for about 20 years. Conservatively there was more than three thousand people going through our home and some of them we get to know better than others thought that time. I have met and heard stories of a lot of people, not one of them included anything resembling autism.

    In my neighborhood in Hamilton Ontario on about 1 square kilometer I know 4 autistic children. My boy, 6 and low functioning, 6 years old low functioning twin girls, and my neighbors boy now 10 and verbal but kept from having meltdowns by medication. His mother claims that she knows about 8 autistic kids in our immediate neighborhood and I think we will make a little map in the future. But I am certain about the four I know. The four is already a lot. I asked our 68 years old neighbor who has been lived here last 50 years if there was many mentally challenged kids in the area when her kids were growing up. She remembered one "mongoloid" boy. My perception based on immediate experiences is parallel to Somalian canadians described in article. Also allergies were very rare in the place where I grew up even amongst "city kids". I do not have anybody among my first and second cuisines allergic to anything-around 30 people. My boy has strong allergies.

    Of course all those observations can be easily dismissed. "No scientific proof" sentence was used an abused many times before. I personally have strong agnostic streak in me and try to keep my ears and my mind open. No proof does not mean that something does not exist. My direct personal experience has no ambitions to replace science. I can not ignore it though.

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  32. Ah, yes, I've actually read the report from Minnesota about the Somali anomaly. They do in fact find a higher administrative prevalence of Somali children who are 3 to 4.

    This prevalence (about 1.0% to 1.4%) is not higher than the administrative prevalence of children in the general population in Minnesota who are 7 years old (about 1.3%). In Minnesota, autism appears to be diagnosed a lot, but generally you'll see children counted in special education when they are a bit older. One possibility is that Somali children are counted in SE when they are younger for some reason, though I can't say for sure.

    Low functioning autism in children like my son is difficult to miss.Yes, but they would not have been "missed" in the sense that they would not have gotten any diagnoses whatsoever. But they could've been "missed" in the sense that they just didn't get an autism label. It can be easily shown that this occurs.

    As far as trying to remember any autistic persons, different people have different experiences. I remember several classmates from a couple different schools who could've been labeled autistic at the present time.

    Certain situations will self-select for persons who are not autistic at all.

    If autistic persons were sent off to institutions, it's unlikely you'd see them. In 1920 California, about 60 in 10,000 person lived in state hospitals for the insane. It's probably much lower than that now.

    It's unlikely you would not encounter developmentally disabled children, unless you simply were not aware they were disabled. Special education stats show that over 5% of school children in the US were in special ed in 1993. Either the stats are wrong, or your situation is unique, or you simply missed them.

    See also this post.

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  33. Low functioning autism in children like my son is difficult to miss. - I meant missed not by doctors but I by community of mountain villagers where everybody was accounted for, and odd behaviour celebrated with delight by people who entertained themselves by telling stories before TV or radio was invented.

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  34. Are you saying the mountain villagers would recognize developmentally disabled children as autistic specifically?

    That would be strange, considering not even pediatricians are able to.

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  35. @Maryna: How would you reconcile your personal experience with this excerpt from Kanner (1965):

    "Bender, who in 1942 had, as she said, "not seen very many cases in which we could make a definite diagnosis," announced later that by 1951 "over 600" schizophrenic children had been studied in one single psychiatric unit, that of the Bellevue Hospital in New York. By 1954, she had as many as 850 cases on her list, which means an addition of about 250 in the short span of three years. It is highly improbable that all of them would be acknowledged as being schizophrenic by many other experienced child psychiatrists, and yet it cannot be denied that Bender has made careful investigations and has conscientiously adhered to her established criteria."

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  36. My villagers would not point the finger and say "autism". But they would notice an odd behaviour like stalking objects, or stimming, echolalia or obsession with certain object and make it into a story.
    And what about that :
    Ali's parents had never come across this condition back home in Kismayo, a city where children run in the streets and everyone knows everyone else's business.
    ...Somalis call the "western disease" or the "disease from abroad," ...
    Somalis did not have the word for that condition - the same way the Inuit language never had a word for robin.

    That is very similar to my experience.

    And by the way, before commenting to your post I have never thought about it really hard. The number of autistic kids where I live now is probably higher than average even now.

    That autistic kids were being consistently misdiagnosed by doctors and psychiatrists for decades I have no doubts of.

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  37. It seems obvious that there would be some problems in trying to recall symptoms observed in hundreds of children from decades back; symptoms which would not have been thought of as significant, until you learned about autism.

    For example, Jenny McCarthy said herself that she didn't think much of her son's hand-flapping until she learned of autism.

    That's why it's necessary to look at science. Anecdotes, testimonials, and memory over decades can't be considered reliable.

    Echolalia, for example, has been described since the 1800s.

    Additionally, these symptoms are not universal in autism. What is the prevalence of echolalia in ASD, for example? Who knows.

    As far as low-functioning autistic children, the prevalence is more like 1 in 500.

    If you look at passive surveilance databases like Cal DDS, the administrative prevalence of autism with mental retardation is at most 13 in 10,000.

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  38. @Maryna: How would those experiences be reconciled with a paper such as this one or this one?

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  39. I'd also recommend this 1887 paper by Langdon Down. The section on Idiot Savants is fascinating. But let me quote a different section:

    "Deferred or altered Speech.- Lesions of speech often constituted a basis of great interest and importance for a diagnosis. The absence of speech at five or six years of age was in itself a matter for grave anxiety. It was usually referable to one of three causes: (1) complete deafness or slight congenital defect of hearing; (2) defect of conformationin the tongue, palate, or lips ; (3) defective mental power. Speech, when it existed, was often echo-like. Cases were mentioned ; to the question, "How are you to-day ?" came the immediate reply, "To-day ;" while to "Are you a good girl ?" the response was "Girl." Sometimes the whole question was repeated."

    Clearly, someone with the ability to recognize such "symptoms" did so.

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  40. "I am not much into numbers. I prefer my personal observation."

    I am a psychologist. We have to do personal observation and deal with numbers on grand scales.

    I say - and I can guarantee - that anyone thinking they're a colleague of mine would say that either without the other is actually a dangerous way to go. And personal observation has to be tempered with an objective system of coding that would get a high concordance from another person trained in the use of the same system.

    "Of course all those observations can be easily dismissed. 'No scientific proof' sentence was used an abused many times before."

    Yes they would be dismissed as anecdote if there were no accurate recording (long-term memory recall is simply too fragile to be reliable). Ethnographic methods of assessment do exist (and I actually use them!), but they are only useful if they are safeguarded against data contamination.

    Which is why no single-source information supply can be considered ethnologically useful (even Margaret Mead's work in Samoa - based on the playful concoctions of two Samoan girls - was faulty as hell).

    And I'm saying this as one who favours ethnographic methods over standardised-only protocols.

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