Autism Epidemic Talk

20 Jan

A couple of slap dash blog pieces appeared today both on the same subject – the so called autism epidemic. First off is Harold who writes about a series of interviews with David Kirby. David says:

<blockquote>It’s crazy that in this debate, we’re still debating whether autism numbers are actually going up or not, which is insanity to me. It’s people desperately clinging to this belief that autism is genetic, that it’s always been with us at this rate, that we’re just better at counting it, better at diagnosing it.</blockquote>

Harold claims David has ‘hit the nail on the head’ with this quote. I disagree with Harold and I disagree with David. Its far from insanity to examine a perfectly valid hypothesis. More later.

Anne Dachel at the Age of Autism writes :

<blockquote>Why do I personally know so many young people with severe autism, whose symptoms can’t be ignored?  How could we have just ignored these people in the past?  Where are those misdiagnosed adults with classic autism—those with the same symptoms we see in so many children today?

I’m not talking about [Kristina] Chew’s autistic neighbor who was able to have a conversation with her, or [Paul] Offit’s people who are kind of ‘quirky.’  I mean adults who can’t talk, those in diapers, people who scream for hours and pound hours in walls and who constantly rock back and forth.</blockquote>

Dachel goes on to list several news reports which question the idea of there not being some kind of an epidemic. I disagree with her view and I disagree with the way she has reached her view.

Both Dachel and Harold (and David Kirby come to that) are claiming that epidemiology can be ursurped by individual experience – Dachel’s individual experience with ‘so many young people’ and David’s individual experience with the idea that people are desperately clinging on to some sort of belief in a genetic form of autism.

Now, casting aside the fact that the some of the forms of autism that we know about (Rett Syndrome etc) _are_ solely genetic we have to – as we do with _all_ forms of science, cast aside personal anecdote when making sweeping statements about a very large group of people. What we need to do instead is look at the science. So what does the science say?

Nothing. As far as I can see no firm case has been made that there either is or is not an autism epidemic. Why? Because the science hasn’t been done. It is maybe worth noting that it is the firm opinion of autism experts that a large part of any possible rise is due to:

a) Better diagnostic tools

b) More places at which to recieve a diagnosis

c) More awareness amongst clinicians of autism

d) Earlier diagnosis

e) Diagnostic substitution

f) Widening of diagnostic criteria

Experts such as Eric Fombonne, Roy Richard Grinker and Simon Baron-Cohen have all spoken about these ideas at length. However, that doesn’t make them right. There still seems to be no hard and fast science that says there is an autism epidemic or not.

45 Responses to “Autism Epidemic Talk”

  1. ebohlman January 20, 2010 at 17:33 #

    Dachel is plainly working on the assumption that autism causes developmental halt rather than mere developmental delay. “Where are all the autistic adults?” in certain circles really means “where are all the adults who act like autistic children?” She seems unaware that many “high-functioning” adults were “low-functioning” children.

    The main utility of “autistics don’t develop” is to allow quacks to take credit when autistic kids do develop. I’ve always wanted to see a Saturday Night Live or similar sketch about a “miracle growth supplement” full of testimonials by parents showing how much taller their teenagers are than when they were toddlers, thanks to taking the supplement all those years.

  2. Socrates January 20, 2010 at 18:08 #

    “I’m saying is that there’s no science either way to support or not support the idea of an autism epidemic.”

    Well. the Adult Prevalence study by Brugha – was admittedly tiny, but certainly didn’t show much sign of an increase over time – I understand this was just a sub-set of the Greater Project – which I think involves a Prison prevalence study and some other elements.

    If anyone knows where to find out more about this – please let me know.

  3. Cass January 20, 2010 at 23:22 #

    Anyone who goes out in public in the United States will see that there is an epidemic… I went to a birthday party with my daughter. 4 out of 7 of those children were on the spectrum. No they didn’t know each other from clases for autistic children. They were people living in a neighborhood.

    When my son walks up to children in public setting to befriend them, he has a 50% chance the child will not answer because the new friend has an ASD.

    The CDC has confirmed the numbers and from what I can tell they are conservative. Don’t forget about the people with children who have PPD and are in denial. I teach and I SEE these children as never before.

    To deny it is a crime and we will answer to God for it. Are you prepared to allow it to continue? I’m not.

  4. Socrates January 20, 2010 at 23:28 #

    You son’s school has 50% of boys with an ASD? Woah!

    I would not want to be on the wrong side of G-d, so there’ll be denialism from me.

    It is and epidemic and western civilisation is doomed unless we all donate at least 20% of our income to Autism Speaks.

  5. Dedj January 21, 2010 at 00:00 #

    Cass – something must be going on. It’s unlikely that you would see what you see from pure chance alone.

    Or you could be mistaken.

    Or making it up.

    Guess which two options look most likely?

  6. Tom Kelly January 21, 2010 at 00:27 #

    You have got to be kidding me that you would still argue that there has not been a true increase in the prevalence of autism. It seems to me that there is no amount of scientific research or data that could ever convince you otherwise.

    What you are suggesting just doesn’t pass the common sense test. CDC reports that autism rates have increased by approximately 50% in a four year period. During this four year period, there has been no change in DSM-IV criteria, the same data collection/analysis methods have been used, and next to no changes in the availability of treatments through health care or education plans. So what you are saying is that in the last four years, despite all the supposed improvements in research, awareness, and diagnostic capabilities that explained previous increases we were still missing 50% of the cases of autism. That is just a ridiculous point of view.

    Don’t even know why I bothered to post this because you are a hopeless cause.

    • Kev January 21, 2010 at 16:30 #

      Touchy touchy Tom, why participate if you’re not interested?

      I’m not saying there is no epidemic I’m saying there is no science either way. Whats so hard to accept about that idea? And why is the possibility we were ‘missing’ up to 50% of US autistic people ridiculous? Better numbers stem from a vast variety of things – including the possibility of a real increase – don;t you think thats so? Or are you using the ‘epidemic’ to prop up another belief?

  7. livsparents January 21, 2010 at 05:57 #

    Hey, guess what? The school MY daughters go to, 100% of the kids there are autistic. Before Livie, the school my oldest went to…I didn’t see a single autistic child, and I was REALLY (not) looking. Why is it so hard to imagine your circle of people and perceptions will radically change after a diagnosis?

    The other factor that is probably more responsible and less recognized is the changes in the law, at least in the US in the 90’s to require schools to educate special needs kids more better (I graduated in ’92 ;>) ) than they ever had before. Not only were there more places,more tools and more awareness, there has been more REASON in the last 15-20 years to get a diagnosis.

    Anne’s also the classic ‘revisionist calling the denialist blind’, implying that the ‘quirky’ are some kind of odd exception on the spectrum. I guess those kids that comprise at LEAST 50% of those epidemic numbers never would have been considered for a diagnosis 20 years ago don’t count unless you want to prove an epidemic.

    Also, FYI Anne, these autistics WERE ignored…they were institutionalized and locked away if they had diapers and banged their heads, with no thought for their education or even the idea that they actually could understand.

    I would truly like a rational discussion about the possibilities that increases in areas of autism are occurring, bt these folks certainly aren’t going to be ones starting anything rational anytime soon…

  8. Do'C January 21, 2010 at 07:26 #

    I like your comments Bill.

    Not science, but it is interesting that more kids are in regular schools with an IEP under the label of ASD than ever before, yet the relative percentage of the population in regular schools with “special needs” remains unchanged.

  9. Dedj January 21, 2010 at 16:41 #

    “CDC reports that autism rates have increased by approximately 50% in a four year period.”

    Reference please.

  10. Ken Reibel January 21, 2010 at 16:59 #

    Tom, the 1:100 rate is nothing new. Dr. Lorna Wing wrote in 1998 that when we combine severe cases of autism with less severe, the rate is likely to be closer to 1:91.

    To ignore data that don’t agree with you doesn’t pass the common sense test.

  11. passionlessDrone January 21, 2010 at 16:59 #

    Hello friends –

    livsparents say:

    Also, FYI Anne, these autistics WERE ignored…they were institutionalized and locked away if they had diapers and banged their heads, with no thought for their education or even the idea that they actually could understand.

    DoC says:

    Not science, but it is interesting that more kids are in regular schools with an IEP under the label of ASD than ever before, yet the relative percentage of the population in regular schools with “special needs” remains unchanged.

    Aren’t these mutually exclusive if our thoughts are that the incidence of autistic behavior are static over time? If these children were getting ignored and not put into school, why hasn’t the relative percentage of the population with special needs budged now that the law has changed and they seem to be in school in spades? If our relative percentage of children with special education labels are the same, then these children weren’t being ignored and kept out of school. (?)

    I could think of a way these two things , but it’s long on the maybes and the ifs; and it involves the phenomena of autistic behaviors increasing, while the phenomena of less specific learning disabilities decreasing, but not due to diagnostic substitution. (though I wouldn’t argue that some diagnostic substituion has occurred)

    How do we come to understand the possiblity of substituting our environmental impacts? For example, thirty years ago (or so), we started phasing lead out of our gasolines, paints, and other items our pregnant mothers and infants were exposed to. Lead was easy to identify as a problem, even as an adult, getting exposed to enough of it was evidence of neurological impairment. Lead comes out of gasoline and IQs start improving.

    But at the same time lead was going out, a plethora of other chemicals with more subtle effects were proliferating. Phthalates come to mind, but there are bunches of sythentic chemicals with similar endocrine disrupting and/or immunomodulatory effects that are novel to the planet that our infants have been exposed to in the past two generations. We aren’t nearly clever enough to understand their effect on the developing brain, IMO.

    Tragically, I don’t think our scientific acumen is nearly precise enough to reach any conclusions on this line of thinking, but I do think we might do ourselves some favors by expanding our choices of possibilities.

    – pD

  12. passionlessDrone January 21, 2010 at 20:03 #

    Hi Ken Reidel –

    Tom, the 1:100 rate is nothing new. Dr. Lorna Wing wrote in 1998 that when we combine severe cases of autism with less severe, the rate is likely to be closer to 1:91.

    To ignore data that don’t agree with you doesn’t pass the common sense test.

    Hm.

    So what about Fombonne, who found 60/70 per 10,000 prevelance of autism just a few months ago as reported on this blog?

    Should we believe that the forty three studies he incorporated into his metadata analysis missed a full third of the cases of autism just because Wing said so in 1998? It is certainly possible.

    Or what about the Faroe Island study, wherein every child in school was evaluated, and an rate of .56% was found? Why should we believe that the evaluators missed nearly half the children with autism? This study was thrown around quite a bit when it was useful in dispelling mercury causation theories; how come no one was worried about how badly it missed Wing’s ten year old conclusions at that time?

    Or in Australia in 2005, rates from 4.3 – 5.5 per 10,000 were found.

    What is to keep a skeptic from believing that the recent love affair with Wing’s number is simply an affair of convenience? Indeed, a bride to be left at the alter for another finding with even higher numbers three years from now when the CDC reveals even more alarming numbers?

    To ignore data that don’t agree with you doesn’t pass the common sense test.

    Indeed.

    – pD

  13. livsparents January 21, 2010 at 21:02 #

    The ‘ignored’ population that I was commenting on, I make the assumption that those children who had Self Injurous Behaviors, mostly non verbal and exhibited ‘strange’ behaviors were possibly classified as ‘mentally retarded’. The data shows that category dropping in the US educational data about 8% from 1996 to 2005. I can’t say that there are no other factors in that (I’ll go out on a limb and state that it’s NOT due to abortion rates for Down’s Syndrome babies, since the 6-11 year old category is consitantly going down) but a good portion of that has to be diagnostic substituion over to autism. Means to me that they get a different level of services, possibly higher educational expectations and hopefully less warehousing.

    “We aren’t nearly clever enough to understand their effect on the developing brain, IMO.”
    Please pass this sentiment over to Ms Dachel and Mr Kirby. Their gross oversimplifications of complex issues hamper investigations of real potential problems.

  14. Joseph January 21, 2010 at 23:00 #

    It seems to me that there is no amount of scientific research or data that could ever convince you otherwise.

    No, there could be. It just doesn’t exist. There are essentially only two reliable ways (that I know of) to show that there has been a true autism epidemic:

    1. Demonstrate that the prevalence of DSM-IV ASD in adults – by exhaustively searching all diagnosed and undiagnosed adults in a population – is statistically lower than that of children.

    2. Demonstrate that the prevalence of Kanner or DSM-III autism – by faithfully replicating methods, criteria and evaluations used in old papers – is statistically higher today than in the past.

    #2 has not been done at all, AFAIK. #1 has been attempted, but prevalence in adults has actually been found to be the same as that in children. There’s, of course, the recent NHS study. But then there’s also Kadesjö et al (1999), which I consider an “adult” prevalence study, making the NHS study a replication.

    During this four year period, there has been no change in DSM-IV criteria

    Evidently, criteria doesn’t cause prevalence to rise instantly. There are other factors, primarily awareness, plus there would obviously be a lag.

  15. Joseph January 21, 2010 at 23:10 #

    So what about Fombonne, who found 60/70 per 10,000 prevelance of autism just a few months ago as reported on this blog?

    I don’t understand. Why should we assume that the bulk of the studies Fombonne looked at in hist meta-study didn’t miss any autistic children?

    Or what about the Faroe Island study, wherein every child in school was evaluated, and an rate of .56% was found? Why should we believe that the evaluators missed nearly half the children with autism?

    It’s possible the Faroe Islands do have a lower prevalence of ASD. But then, it’s also possible that another group of researchers evaluating the same children now would identify more autistic children.

    You don’t think all children are either clearly autistic or clearly non-autistic, and all researchers would agree as to who is and isn’t autistic? The world doesn’t work like that.

    Also, it sounds like all the children were screened. It doesn’t say all school children were evaluated with a diagnostic tool. That would be a pretty huge undertaking. So case-finding is not necessarily perfect in that study.

  16. Ken Reibel January 21, 2010 at 23:57 #

    The tool used to diagnose can also influence the study outcome. The Faroe researchers used the Diagnostic Interview for Social and Communication Disorders (DISCO).

  17. Ken Reibel January 22, 2010 at 00:07 #

    The 5:10,000 rate you cite for Australia in 1999 was for autistic disorder.

  18. passionlessDrone January 22, 2010 at 01:10 #

    Hi Ken Reidel –

    The 5:10,000 rate you cite for Australia in 1999 was for autistic disorder

    From the abstract I linked to:

    AIM: To ascertain the incidence of autism spectrum disorders in Australian children. SETTING: New South Wales (NSW) and Western Australia (WA), July 1999 to December 2000. DESIGN: Data were obtained for WA from a prospective register and for NSW by active surveillance. MAIN OUTCOME MEASURES: Newly recognised cases of autism spectrum disorders (defined as autistic disorder, Asperger disorder and pervasive developmental disorder not otherwise specified [PDD-NOS]) in children aged 0-14 years; incidence was estimated in 5-year age bands (0-4 years, 5-9 years, 10-14 years). RESULTS: In WA, 252 children aged 0-14 years were identified with autism spectrum disorder (169 with autistic disorder and 83 with Asperger disorder or PDD-NOS).

    You may want to actually read the abstracts before commenting next time.

    – pD

  19. Mike Stanton January 22, 2010 at 01:16 #

    Ken has suggested that a figure of around 100 in 10000 for autistic spectrum disorders is consistent with a similar figure by Wing from 1998. This indicates that there has been no increase over time and therefore no epidemic.

    pD’s suggests that a meta-analysis by Fombonne and the Faroe Islands study are more consistent with a figure between 56 and 70 in 10000 and that this somehow undermines the credibility of Wing’s earlier figure of 91 in 10000. But in the context of this discussion, the differences between these figures pales into insignificance when set against the claims for a twenty fold increase in the last twenty years that are commonly used to as evidence for an epidemic.

    The Australian figures are an interesting anomaly. This is especially so when you consider that in 2007 the same authors published The Prevalence of Autism in Australia whose core finding was that prevalence for all ASDs in Australia was 62.5 per 10,000 for 6-12 year old children.

  20. Ken Reibel January 22, 2010 at 01:29 #

    I went to your link and read the abstract. Twice. I could hardly believe your reading comprehension skills are so poor:

    Incidence of autistic disorder in the 0-4-years age group was 5.5 per 10,000 in WA (95% CI, 4.5-6.7) and 4.3 per 10,000 in NSW (95% CI, 3.8-4.8).

  21. Mike Stanton January 22, 2010 at 01:34 #

    Joseph
    you wrote

    2. Demonstrate that the prevalence of Kanner or DSM-III autism – by faithfully replicating methods, criteria and evaluations used in old papers – is statistically higher today than in the past.
    #2 has not been done at all, AFAIK.

    You may be interested in this from Wing and Potter 2002

    Four studies, one early one in Camberwell (4) and three later ones in, respectively, Mölnlycke, (24), Karlstad (28) and Northern Finland (29) applied both Kanner’s criteria and ICD-10 childhood autism criteria to the same children. In the Camberwell study, ICD-10 criteria were applied retrospectively to the original data. All children fitting Kanner’s criteria also fitted the DSM-IV/ICD-10 criteria but, in each study, the numbers fitting Kanner’s syndrome were markedly lower than those fitting DSM-IV/ICD-10 childhood autism. The proportions with Kanner’s syndrome ranged from 33 to 45 % of all those diagnosed as having DSM-IV/ICD-10 childhood autism in the four studies.

    References from the excerpt.

    4) Wing, L., and Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. J Autism Dev Disord, 9: 11-29.

    24) Arvidsson T, Danielsson B, Forsberg P, et al. 1997. Autism in 3-6 year-old children in a suburb of Goteborg, Sweden. Autism 1: 163-171.

    28) Kadesjö B, Gillberg C, Hagberg B. 1999. Brief report. Autism and Asperger syndrome in seven-year-old children. J Autism Dev Disord 29: 327-332.

    29) Kielinen M, Linna S-L, Moilanen I. 2000. Autism in northern Finland. European Child Adolesc Psychiatry 9: 162-167.

  22. Joseph January 22, 2010 at 01:51 #

    The australian study abstract does indeed refer to autistic disorder incidence only.

    Incidence of autistic disorder in the 0-4-years age group was 5.5 per 10,000 in WA (95% CI, 4.5-6.7) and 4.3 per 10,000 in NSW (95% CI, 3.8-4.8).

    I wonder if the authors really do mean incidence. Perhaps they are confusing it with prevalence. An incidence – presumably annual – of 4 to 5 in 10,000 is rather high, depending on the population they are calculating it for. It might be explained by late diagnoses, if so.

  23. passionlessDrone January 22, 2010 at 01:56 #

    Hi Joseph –

    Why should we assume that the bulk of the studies Fombonne looked at in hist meta-study didn’t miss any autistic children?

    What is to keep us from assuming that that Wing overcounted, and the real rate is 60/70 out of 10,000 as found by Fombonne? Perhaps Fombonne overcounted and the real rate is 50 out of 10,000 as found in Australia and the Faroes?

    It’s possible the Faroe Islands do have a lower prevalence of ASD. But then, it’s also possible that another group of researchers evaluating the same children now would identify more autistic children.

    Both are possible. Or maybe they’d evaluate all those children and find less autism than was found in 2006. If our goal is to find reasons to question any study that indicates a rising prevelance, there is certainly nothing to keep us from doing this.

    You don’t think all children are either clearly autistic or clearly non-autistic, and all researchers would agree as to who is and isn’t autistic? The world doesn’t work like that.

    This is a particularly flacid attempt to characterize my position. If this type of bias is so strong, and we can’t trust any study out there from this type of bias, why bother looking at any of them? There seems to be a rather long running and expensive proposition to understand autism prevelance as evidenced by a multitude of studies; why haven’t any of the dozens or hundreds of autism researchers performing this research reached the conclusion that the real world doesn’t operate in a manner consistent with reaching valid conclusions?

    I’m OK with the idea that all of our data is horrible; including the CDC and IDEA data. But the data is all we really have, and the overwhelming trend in this data is that rates are increasing at an alarming rate; for this not to be a real crisis, one hundred percent of the observed increases must be artifacts.

    If twenty percent of the observed increase is real, isn’t this alarming? What about ten percent?

    – pD

  24. Joseph January 22, 2010 at 01:58 #

    @Mike: Thanks for those references. I’m afraid those studies are a bit dated, and probably aren’t going to convince the adult autism deniers. What would need to be shown is that children born recently, say, after 2000, have a low prevalence of Kanner and/or DSM-III autism.

    What I think is challenging about that is replicating the biases of researchers of the past.

  25. Joseph January 22, 2010 at 02:14 #

    What is to keep us from assuming that that Wing overcounted, and the real rate is 60/70 out of 10,000 as found by Fombonne?

    Lorna Wing actually speculated. She didn’t do a count of the whole spectrum. She basically said, based on her personal experience and some extrapolation from a couple studies, that she thought ASD prevalence might be closer to 1%. I believe the first time she said this was in 1993.

    Her speculation was first confirmed in Kadesjö et al (1999), with “children” who would now be 25. In the long run, I think Lorna Wing was proven right. She was a pioneer about a lot more than this, however.

    To understand why Lorna Wing thought this, you have to go back to some of her early studies, e.g. Shah, Holmes & Wing (1982); Wing & Gould (1979). What she found was that “the administrative category of mental retardation includes a substantial minority of people with severe impairment of two-way social interaction.” At the time, Lorna Wing probably saw autism in a similar manner to how we see autism today, whereas other clinicians of that time had a much more narrow understanding. It’s no coincidence that Lorna Wing introduced the concept of Asperger’s.

    If twenty percent of the observed increase is real, isn’t this alarming? What about ten percent?

    It depends. For example, the incidence of Down Syndrome appears to be increasing. There are probably a couple obvious reasons for that. Is this alarming?

  26. passionlessDrone January 22, 2010 at 03:58 #

    Hi Mike Stanton –

    pD’s suggests that a meta-analysis by Fombonne and the Faroe Islands study are more consistent with a figure between 56 and 70 in 10000 and that this somehow undermines the credibility of Wing’s earlier figure of 91 in 10000. But in the context of this discussion, the differences between these figures pales into insignificance when set against the claims for a twenty fold increase in the last twenty years that are commonly used to as evidence for an epidemic.

    Hm. This would appear to be the danger of a confrontational style, which I am trying to reduce. For the record, I’m not arguing that that Fombonne, or Wing, or Faroes is accurate; I’m only arguing that treating the Wing numbers as accurate seems fraught with danger and mandates that nearly one hundred percent of our other findings are flawed.

    Maybe Wing was a pioneer as Joseph suggests, but my concern over the ramifications of this not being the case are far more pressing than the chance that he might be right.

    The Australian figures are an interesting anomaly. This is especially so when you consider that in 2007 the same authors published The Prevalence of Autism in Australia whose core finding was that prevalence for all ASDs in Australia was 62.5 per 10,000 for 6-12 year old children.

    This doesn’t seem to much of an anomaly compared to Fombonne (60/70 per 10K), or Faroes (~ .56 / 10K), does it? I’m trying not to misread your statements.

    If you take the numbers that they reported in the first link, they match up broadly to a 62/100000, the problems only start when you start trying to reach 100/100000.

    i.e.,

    RESULTS: In WA, 252 children aged 0-14 years were identified with autism spectrum disorder (169 with autistic disorder and 83 with Asperger disorder or PDD-NOS). Comparable figures in NSW were 532, 400 and 132, respectively. Most children were recognised with autistic disorder before school age (median age, 4 years in WA and 3 years in NSW). Incidence of autistic disorder in the 0-4-years age group was 5.5 per 10,000 in WA (95% CI, 4.5-6.7) and 4.3 per 10,000 in NSW (95% CI, 3.8-4.8). Incidence was lower in older age groups.

    If 169 children with autism hit 5.5 at 169, popping on another 83 with Aspergers and PDD gets us about halfway the difference to 1%. Likewise, 400 brought us to 4.3 incidence in the other area, adding another 132 kids brings us far less close to 1%. Don’t these put us close to what Fombonne and Faroes hit, or at least, a lot closer to them than Wing?

    – pD

  27. passionlessDrone January 22, 2010 at 04:06 #

    Hi Ken Reibel –

    I went to your link and read the abstract. Twice. I could hardly believe your reading comprehension skills are so poor:

    There still isn’t any way to massage the values to get anywhere close to 1% though.

    RESULTS: In WA, 252 children aged 0-14 years were identified with autism spectrum disorder (169 with autistic disorder and 83 with Asperger disorder or PDD-NOS). Comparable figures in NSW were 532, 400 and 132, respectively. Most children were recognised with autistic disorder before school age (median age, 4 years in WA and 3 years in NSW). Incidence of autistic disorder in the 0-4-years age group was 5.5 per 10,000 in WA (95% CI, 4.5-6.7) and 4.3 per 10,000 in NSW (95% CI, 3.8-4.8). Incidence was lower in older age groups.

    If 169 with children with autistic disorder achieve a 5.5 per 10,000 incidence, how many more kids with Aspergers and PDD do you need to get to 10 per 10,000? What if you only find 83 kids with those conditions?

    If 400 kids with autistic disrder achieve a 4.3 per 10,000 incidence, how many more kids with Aspergers and PDD do you need to get to 10 per 10,000? What if you only find 132?

    Note that the area with the lower incidence, 4.3, had twice the children as the area with higher levels. What does this do to the amount of undercounting necessary for us to reach a 1% rate across both areas?

    These authors still need to have missed tons of kids if we are to reach the 1% that Wing suggested.

    – pD

  28. Ken Reibel January 22, 2010 at 04:29 #

    From the abstract, it looks like the researchers found that 1/3 of the ASDs were autistic disorder.

  29. passionlessDrone January 22, 2010 at 05:12 #

    Hi Joseph –

    It depends. For example, the incidence of Down Syndrome appears to be increasing. There are probably a couple obvious reasons for that. Is this alarming?

    A fascinating statement. I’ve heard, and read that a huge majority of fetuses with Downs are aborted, and yet, a study in Pediatrics seems to back this statement; at least at a percentage level. Are there that many older women deciding to keep Downs children that we can terminate 90% of them and still see an increase at all? Perhaps the assertion that such a large number of Downs children are aborted is incorrect; I really don’t have a clue. (?)

    It doesn’t matter much though if we acknowledge that this is in large part a false analogy:

    1) We know what causes Downs, and in very large part, the biggest risk factor associated with it; older parents. We have no such knowledge regarding autism.

    2) While the percentage increase, 31% as reported in Pediatrics seems large, the absolute values are barely moving, from 9.0 to 11.8 per 10,000, from the time period of 1979 – 2003, almost 25 years.

    Does anyone here really think that we would be having this discussion if the differences between Fombonne, Wing, and whatever number you want to pull out of 1970-1980 timeframe (or any timeframe) had a difference on the order of 2.8 per 10,000? Anyone?

    Those aren’t luxuries we can apply to what we are observing with autism. We have no readily identifiable cause that raises risk so substantially. A less than 3 per 10,000 difference in prevelance doesn’t even qualify as a speed bump in the jump in autism in the past two decades.

    – pD

  30. Do'C January 22, 2010 at 07:26 #

    Aren’t these mutually exclusive if our thoughts are that the incidence of autistic behavior are static over time?

    I’m surprised by you pD. But, my writing wasn’t that clear. My comment is not connected to that of livsparents. I was not saying that there are more kids in schools with ASD, I was saying there’s an obvious increase in the use of the label ASD. There is a big difference. So no, not necessarily mutually exclusive. There is data demonstrating the relative unchanged nature of the percentage of the population with “special needs” in public schools. I’m not convinced that compares to non-data based comments at all. There could be a small area of mutual exclusion if there’s any data behind scenario 1.

  31. Joseph January 22, 2010 at 18:00 #

    I’m only arguing that treating the Wing numbers as accurate seems fraught with danger and mandates that nearly one hundred percent of our other findings are flawed.

    Again, it’s clear that Wing’s prediction was a good one. Yes, one hundred percent of old findings can be easily “flawed.” For one, most of them didn’t use the “right” criteria. They didn’t have the sorts of tools and case-finding methods they have today.

    To put it another way, it’s much easier to under-count than to over-count.

  32. Joseph January 22, 2010 at 18:11 #

    Are there that many older women deciding to keep Downs children that we can terminate 90% of them and still see an increase at all?

    @pD: Yes, it would have to be wrong. My guess is that 90% of women who test positive abort. Very few women must undergo this sort of testing, and the test probably fails a lot of times.

    Those aren’t luxuries we can apply to what we are observing with autism. We have no readily identifiable cause that raises risk so substantially. A less than 3 per 10,000 difference in prevelance doesn’t even qualify as a speed bump in the jump in autism in the past two decades.

    But you can’t even demonstrate a real 3 per 10,000 change in autism prevalence, can you? You’re basically speculating. What if even a small part of the administrative/diagnostic rise is real? Wouldn’t that be terrible? And so on. The gist of your argument seems to be the precautionary principle. But it’s not clear what this entails. The precautionary principle was already applied in relation to autism, and it didn’t do anything.

    (Note that if autism includes many genetic syndromes, none of which undergo prenatal genetic screening, then we should expect its prevalence to have risen more than that of Down’s. I’d like to see the Down’s data to check if there’s a detrended cross-correlation with autism data.)

  33. passionlessDrone January 22, 2010 at 20:03 #

    Hi Joseph –

    Yes, it would have to be wrong. My guess is that 90% of women who test positive abort. Very few women must undergo this sort of testing, and the test probably fails a lot of times.

    I thought (?) that this type of information was essentially visible via ultrasound, or at least you could get a good idea of if more invasive tests might be in order based on ultrasounds. Of course, not everyone gets an ultrasound. But the point regarding differential care levels is well taken, something that got discussed earlier, I think.

    But you can’t even demonstrate a real 3 per 10,000 change in autism prevalence, can you? You’re basically speculating.

    Our existing data is of such poor quality that everything is speculating.

    What if even a small part of the administrative/diagnostic rise is real? Wouldn’t that be terrible? And so on. The gist of your argument seems to be the precautionary principle. But it’s not clear what this entails.

    I’m sure that diagnostic substition is part of the rise.

    You are correct, and this is where the rubber meets the road. I would classify my argument as hinging on a strongly precautionary stance. I’m not sure what the opposite of this argument would be; and I’m not really sure you hold that opposite opinion. (?)

    What such a precautionary argument entails is a good point for discussion. In the context of this thread, it means that crafting policy and research goals based on the assumption of no real increase is exceedingly dangerous; the costs of this being an inaccurate assumption are just too large. I don’t think you have explicitly done this, but implicitly, this seems to be a common thread in this type of discussion.

    But it isn’t just that the costs of being wrong are large, its that we have a long and colorful history of wildly optimistic assumptions about the effect of modifying our environment and only figuring out the dangers after the fact. This is especially salient if we begin to consider the what we are learning about the incredibly fragile nature of the uterine and perinatal periods.

    Take, as a single example, maternal immune activation and the effect on the fetus. We have epidemiology that tells us cohorts born in particularly virulent flu seasons are more likely to receive a diagnosis of schiozphrenia. From animal models we can observe altered cerebelluar development, neurotransmitter imbalances, and behavioral changes resulting from maternal immune activation. Digging deeper, we know that increases in specific cytokines during pregnancy can cause some of these changes. There is a lot, lot more on this.

    So what? Well, it turns out some of the very same chemicals our mothers are exposed to in ways no other generation has been previously have potent immuno-modulatory properties, including adjuvant effects, up and above their ability to mimic molecular targets. For example, here, here, or here.

    So, we have lots of evidence that maternal immune activation can affect the behavior and brain physiology in the offspring. We also have evidence that chemicals now widely distributed in our environment, for the first time ever, can act to promote an exaggerated immune response.

    Where does that leave the offspring of women who have been ingesting low but real levels of endocrine disrupters their entire lives versus their mothers, who were exposed to far fewer (or none) of these chemicals? What do we need besides elucidation of a dose relationship between immune response and degree of developmental impact to start feeling the need for caution?

    Of course, this doesn’t even bother to address the endocrine disrupting effects of these types of compounds and the potential for modifying brain development. And we already have one paper that seems to have found a greater risk of developing autism if you are raised in a home with flooring comprised of some of these same chemicals.

    In the meantime, we seem be observing an explosion of behavioral and physiological problems with our children. It is possible that all of our observations of increasing rates are cultural artifact of one flavor or another, but the fact that once, ten years ago, someone predicted rates would eventually rise to what was announced recently isn’t good enough for me to believe that our environmental engineering is without consequence.

    The problem with (what I think) your position is, is that there isn’t any room for any of our environmental changes to be impacting numbers. Maybe I’m wrong here, I’m trying to be careful not to mis-state your position; but it seems like the core concept behind the epidemic debate, and indeed your assertion that I can’t even prove a 3 in 10,000 increase is that rates are, and always have been static.

    That’s putting a lot of faith into a system of diagnostic tools that everyone agrees are very difficult to use in the real world. If this means I am operating on a precautionary principle, I guess I’ll wear that tag with pride.

    The precautionary principle was already applied in relation to autism, and it didn’t do anything.

    I’m not sure what you mean by this. (?)

    – pD

  34. Joseph January 22, 2010 at 21:32 #

    I’m not sure what the opposite of this argument would be; and I’m not really sure you hold that opposite opinion. (?)

    The opposite argument is also a sort of precautionary argument. That is, what if a lot of intellectual effort and resources are being wasted on a dead end?

    I’m familiar with enough data first hand to say with some certainty that the rise is primarily not real, and working under the presumption it’s real is a waste of effort.

    Any real rise will probably be small, and likely of a similar nature to the Down Syndrome rise.

    The problem with (what I think) your position is, is that there isn’t any room for any of our environmental changes to be impacting numbers.

    No, it just seems implausible, and not demonstrated. If such effects were real, presumably they would not be difficult to demonstrate statistically in a clear manner.

    For example, I suggested above that if there’s a real rise in autism prevalence due to the same causes of the Down Syndrome rise, we should be able to determine this statistically. For an environmental factor that causes brain damage, perhaps you would look for a corresponding rise in, say, Cerebral Palsy.

  35. Mike Stanton January 23, 2010 at 00:58 #

    pD
    when I referred to an anomaly in the Australian data I was referring to the contrast between the study you cited by Williams et al (2005) which attempted to measure incidence, and the later Australian report (Williams et al. 2007), which had the same lead authors, that measured prevalence. The highest figure in the first study for all ASDs was 8 in 10000. The 2007 report said prevalence was 62.5 in 10000. When you read the complete study from 2005 its obvious weakness is that it attempts to base incidence on diagnosis and the authors acknowledge that there is more autism out there than their study reveals. They also only counted children newly diagnosed or recognized to have autistic features between July 1999 December 2000. So all children up to the age of 14 who already had a diagnosis or were suspected of being autistic in July 1999 were excluded from the final figures.

    I am sure Joseph will have more to say on the difficulties of measuring autism incidence as opposed to prevalence. Regarding Lorna Wing’s visionary status I concur with Professor Stauffenberg, who opined in a meeting I once attended that every time someone had a good idea about autism you would find that Lorna had had it first.

  36. Socrates January 23, 2010 at 01:33 #

    Mike,

    That last sentence just stuck in my brain and I’ve had to re-boot my box to respond.

    It speaks volumes about you and you advocacy work. I’m now convinced that far from being a part of the Solution, you are part of the Problem.

    And you and some of your colleagues. with your saccharine condescension and effortless Neurotypical superiority and massively overdeveloped sense of entitlement, are now truly and forever my bounden enemies.

    Your slights will return in Spades.

  37. Mike Stanton January 23, 2010 at 08:22 #

    Socrates,
    so tell me how I am wrong. Let us have jaw-jaw rather than war-war. I do think that my last sentence was wrong because it disregarded the contribution that autistic people have made to our understanding. I apologise for that.

  38. Socrates January 23, 2010 at 12:09 #

    Jesus Wept! You have totally missed the point. You’re not at work now, and you’re not talking to one of your pupils, nor Virginia’s Poodle.

    You and you’re cronies are beyond reason. You seem to forget the nature and quality of Socrates’ unseen off-line advocacy efforts.

    The one you’ve seen ample documentary evidence of. The one’s you and your so terribly enlightened colleagues stamp on at every opportunity.

    The 3 years of consistent and mature advocacy that’s been drowned in a bucket, like unwanted kittens.

    Hardly surprising Socrates is such an atavistic misanthrope.

    There will be a reckoning.

  39. Timelord January 26, 2010 at 00:03 #

    Kev, FWIW I tried to defend you on Doherty’s blog – and surprise surprise. He modded me out. I figured he might so if you are interested;

    http://philipgluyas.blogspot.com/2010/01/harold-dohertys-nit-picking.html

  40. Dedj January 26, 2010 at 00:34 #

    It was the same with the ‘laughing amongst autistic children’ research.

    His own experience with his son only, trumped research by experts using known research methods.

    Oddly enough, my posts on his website contesting his attitude and questioning his experience never got through, yet other posts making accusations of lying or misrepresentation against me were let through….

  41. Timelord January 26, 2010 at 10:39 #

    That surprises you, Dedj?

  42. Kev January 20, 2010 at 17:01 #

    Harold misunderstands – purposefully? – again. Autism may well have an environmental role, I didn;t mention that aspect at all. What I’m saying is that there’s no science either way to support or not support the idea of an autism epidemic.

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - Autism Epidemic Talk « Left Brain/Right Brain -- Topsy.com - January 20, 2010

    […] This post was mentioned on Twitter by Kev, Harold L Doherty. Harold L Doherty said: #Autism epidemic denier Leitch cites Baron Cohen who in fact points to environmental role in autism http://tinyurl.com/yda5vek […]

  2. Autism Epidemic Talk | Left Brain Right Brain – International Badass Activists - August 26, 2020

    […] Source: Autism Epidemic Talk | Left Brain Right Brain […]

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