John Stone/Polly Tommey claim oversight

26 Sep

The first official sounding of the death knell for the ‘hidden horde’ hypothesis of autism (it must be vaccines because there aren’t 1 in 160/150/100 adult autistics) was recently sounded (as reported by Anthony) when an NHS study announced that the rate of autism amongst adults was 1% – exactly the same as for kids.

Fully aware of the implications for their beloved anti-vaccine hypothesis John Stone and Polly Tommey write/star in a recent post on that repository of all things bullshitty – Age of Autism.

NHS Autism Report suggests the increase in autism in recent years was all down to an oversight

Says John Stone, trying to reassure his readership theres still life in the terminal old dog of the hidden horde hypothesis. And why does he say this?

“Are we really able to believe all that we hear on such important subjects, or is there a stronger hand with adifferent agenda behind it?”

Ahhhh, of course! When a piece of science/news story doesn’t support your point of view then it _must_ be the work of….oh, whoever – Illuminati? Out of control government? GAVI? Take your pick.

But surely Stone and Tommey have better reasons than that…? Don’t they?

Well no, not really. They didn’t like the perfectly valid Autism Diagnostic Observation Schedule that was used. Although they don’t refer to it by name, instead they cherry pick questions to try and demean the validity of the test.

The report was based on adults living in households throughout England and the assessments were done in two stages. Stage One asked individuals to rate how well they agreed with 20 statements about their likes, dislikes and abilities – such as whether they preferred going to ‘libraries’ or ‘parties’.

…If the full range of ability had been included in the NHS report, alongside the verbally fluent, high functioning adults living at home, there would surely be far more than 1 in 100. So, either there are more adults than children with an ASD and autism is on the decline(!?) or there is something wrong with the report.

A quick glance at many mainstream autism orgs claim on prevalence would show Stone that yes, there are more autistic adults than children. This report could indeed be interpreted to show a decline in autism.

People will claim that thats counter intuitive but it really isn’t. As autism has become more recognised, better diagnosed and there are more centers worldwide for its early detection, child numbers have not risen but have become more apparent. This is true across the whole ‘spectrum’.

Taking the NAS numbers on prevalence They say that at a rate of 1 in 100 children gives a total of around 133,500 kids with an ASD. This leaves 366,500 adults. A rate of 0.8%.

So the estimate prior to the new report was 0.2% out. But Stone was right, there are now (and always were) more ASD adults than kids. Thats because there are more adults in the general population than kids. In terms of whether the _rate_ of autism has decreased there’s no research to compare this to but an estimate of 0.8% is pretty damn close to 1%. In real terms the NAS were only out by 733 adults. So I would say that this report reflects reality – with no doubt regional variance and other factors, the adult rate is (and always was) around 1%.

But the stoopid continues apace:

One thing is clear, however, the report has no relevance to children withautism like my son Billy and the many thousands like him.

Quoth Polly Toomey who somehow missed the point that this was a study of adults and thus was never going to have much relevance to her children.

We’re then treated to the science of Carol ‘try me shithead‘ Stott who personally received over £100,000 of legal aid money to prop up the dead MMR hypothesis. She claims (after further digs at ADOS) that a ‘further detailed critique’ will be appearing in that robust science journal AutismFile….owned and operated by one Polly Tommey.

So there we have it. This new study, which whilst far from 100% perfect is also far from the dead dog portrayed by the purveyors of science at The Autism File and Age of Autism. They think theres a conspiracy to ‘big it up’ and refuse to see the statistical truth. ASD hasn’t ever been in epidemic, theres been a stable rate for a long time. These dealers in anti-vaccinationism will just have to deal with that.

100 Responses to “John Stone/Polly Tommey claim oversight”

  1. Mildred September 26, 2009 at 10:25 #

    It would surprise me if Dr Stott has been making “digs” at ADOS when over on ‘The Autism Clinic Site’, in an article introducing her to the reader (photograph alongside), we are advised that ………….

    “Dr Stott is qualified to administer and to train psychiatrists, paediatricians, psychologists, health practitioners and academics in the administration of what are generally considered to be the ‘gold-standard’ diagnostic tools for the evaluation of children with suspected Autism Spectrum Disorders; the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS);”

    http://www.theautismclinic.com/carolstott.php

    Clearly Dr Stott permits the ADOS method which she administers and trains others in, (and is being offered as part of the services provided by the clinic), to be described in her introductory piece as being thought of by many as a “gold standard” diagnostic tool in the evaluation of children with suspected autism.

    The ADOS method with it’s “gold standard” status was also used in the MMR litigation to evaluate the children with autism to advance the case to prove a causal link between ASD and the MMR vaccine, so it seems odd to me that Ms Tommey, Mr Stone and Dr Stott would have any issues with the involvement and application of the ADOS system in this particular study, when it has previously been so highly regarded and thought entirely satisfactory.

  2. Socrates September 26, 2009 at 11:37 #

    If you need further evidence of true nature Dr Stott’s professional practice, look at the circumstances surrounding her leaving Cambridge…

    (She use to live just down the road to me, and many of my associates have met or worked with her…)

    One does not speak her name at University dinners.

  3. Ringside Seat September 26, 2009 at 12:02 #

    I think Brian Deer gets it right when he says about her:

    “Perhaps the most important lesson of this matter is that it reveals the lamentable calibre of psychologist to whom the bewildered parents of autistic children sometimes turn.”

    http://briandeer.com/mmr/stott-letters.htm

    Which really makes me apprehensive about even bothering to critique these people. Best to configure the radar to screen out these trolls and hobbits.

  4. Joseph September 26, 2009 at 14:03 #

    I read Stone’s critique and was actually kind of surprised by the fact that he didn’t identify the actual flaws of the study, and focused instead on spreading misinformation about it. It’s like he wasn’t trying very hard. He starts with:

    If we are to identify cases with confidence, and accurately differentiate cases from non-cases, the case definition must be clearly laid out, with inclusion and exclusion criteria explicitly stated.

    Case definition is clearly noted in the paper as having an ADOS score of 10+.

    Second objection:

    All identified cases are based initially on self-report, from verbally fluent adults living in ordinary household accommodation: this excludes a large proportion of the population of interest

    This is not accurate. Households were chosen at random, the way they would be chosen for any population survey. It’s actually a non-trivial and fairly impressive method that they use, and it must not have been cheap.

    Phase 2 selection is semi-random, and I’ll discuss that shortly. The adults didn’t truly select themselves for phase 2, and it actually wouldn’t matter if they lied to get themselves in or out of phase 2. I could elaborate on that.

    This was a prevalence study that only included adults living in private households, and the paper is clear about this. I’m assuming there’s a follow-up survey of adults living in institutions. So that’s a spurious critique.

    There were some participants (less than 50 as I recall), mostly elderly, who were not able to complete the initial evaluation on their own. There was a proxy evaluation, but they were excluded. The paper discusses this.

    There is some potential for self-selection, but Stone does not mention this. Obviously, you can’t force every person to participate, and the rate of refusals was not trivial. This is probably the most important weakness of the paper. But even in the worst case, yes, autistic adults do exist in significant numbers still.

    The AQ test critiques that follow, even if true, are actually irrelevant. The study does not use the AQ test as a screening tool (and I think this is probably confusing to most people.) It’s simply used as a variable in the calculation of probabilities for phase 2 selection. Theoretically, you could use any variable for this (e.g. shoe size) but the variables they selected were simply designed to increase the probability of selection of autistic people, in order to increase the statistical power of the study.

    ADOS evaluations take a while, and they can’t be cheap. They could only do so many. But they couldn’t evaluate completely random people with the ADOS. They wouldn’t have had adequate statistical power.

    He says some things about ADOS scoring which I’m not knowledgeable enough to evaluate, so I’ll skip that.

    Then goes on with:

    Whilst the authors inform us that no statistically significant differences were generated between smaller range age-groups, they provide no data on this and do not address the issue of power.

    Actually, I understand raw data is available (section 1.5) although I haven’t looked at it. You can’t say that about most studies.

    The fact remains that there was no statistically significant trend by age. Perhaps statistical power was not very good, but this is not evidence that the trend would be made significant with more statistical power. Besides, it’s unlikely a small subset of all adults would be able to carry a prevalence of 1% on their own.

  5. Science Mom September 26, 2009 at 14:05 #

    One thing is clear, however, the report has no relevance to children withautism [sic] like my son Billy and the many thousands like him.

    I’d like to point out to Ms. Toomey et al., that this survey most certainly does have relevance to her son and the many thousands like him. They are going to be adults one day after all. Which leads me to the next observation. How can this alleged autism advocacy group be so intent on slamming the results of this survey because of the farther-reaching implication of vaccines (which was not even included as a parameter in this survey), that they neglect to appreciate that acquiring a better understanding of the adult autism community and procuring services for them is a really good thing?

  6. Science Mom September 26, 2009 at 14:10 #

    This was a prevalence study that only included adults living in private households, and the paper is clear about this. I’m assuming there’s a follow-up survey of adults living in institutions. So that’s a spurious critique.

    You’re right Joseph and would also lead to underreporting as noted by the authors.

  7. MJ September 26, 2009 at 16:04 #

    “They didn’t like the perfectly valid Autism Diagnostic Observation Schedule that was used. Although they don’t refer to it by name, instead they cherry pick questions to try and demean the validity of the test.”

    Sullivan, is it possible for you to get the facts correct? Your track record of late has been very poor.

    The questions that are being demeaned are coming from the screening test used in phase 1. These questions were derived from the Autism Quotient test, not the ADOS as you imply. This test normally has 50 questions but the survey picked 20 questions from it and changed the wordings on some of these questions.

    And if you look at the how well this test identified people with autism it is terrible – a full 97 percent of the time it was wrong. This modified version of the AQ has not been validated and there were no checks for false negatives so it is not possible to determine the sensitivity and specificity of the screen.

    The effect of this screen was to select a biased group on which to do the phase 2 tests. It would have been better had they selected a random group from phase 1 to test rather than use a made up test of unknown properties to select a group.

    The ADOS was only used in phase 2 screening. The ADOS has not been fully validated in adult populations so it is not known how accurate the test is in adults. However, the initial work done seems to indicate that it should work for adults.

    The only thing that we know from the survey is that 19 of 7,461 adults over the age of 18 were identified as having autism. This is a rate of 0.2 percent which is in line with prior estimates.

    Since this modified screen has not be validated its properties are unknown, so it is difficult to know how the selected group relates back to the main group. And I don’t remember seeing data on how the group selected for phase 2 was constructed. Was it random or the individuals with the highest result on the modified screen?

    Also, there is no data available about the ages of these individuals so it is not possible to say whether this group was evenly distributed across the ages or clustered around certain ages. Since the data available for children shows a skewing by age in is reasonable to think that the data for adults would show the same pattern.

    Therefore the results of this survey extrapolating a rate of 1 percent across all adults is just a guess. Perhaps an educated guess, but a guess nonetheless.

  8. Kev September 26, 2009 at 16:16 #

    Now should I mock MJ for failing to identify the author of this post correctly, which is especially amusing given the call for accuracy?

    If there’s fault MJ its mine. I think however, like John Stone before you you are (understandably, given what this study does to the vaccine hypotheses) keen to belittle perfectly valid measuring tools.

    Lets see if I can speak to the lead author and get their opinion.

  9. MJ September 26, 2009 at 16:58 #

    Yep, that was my bad, I think I looked at a different post.

    But I am curious, where is there anything in the survey that says anything about vaccines? I don’t remember seeing a single thing about it in the survey data.

  10. Joseph September 26, 2009 at 17:19 #

    The questions that are being demeaned are coming from the screening test used in phase 1. These questions were derived from the Autism Quotient test, not the ADOS as you imply. This test normally has 50 questions but the survey picked 20 questions from it and changed the wordings on some of these questions.

    Again, the AQ was not actually used as a screening test, but simply to produce a number for a formula. As I noted, they could’ve used “shoe size” if they wanted, in principle. I can speculate on the reason why they made up their own test – it’s quicker to complete.

    The characteristic of the AQ test the researchers had to have hoped existed was simply this: Autistics will tend to score higher than non-autistics. It didn’t need to be perfect at all.

    Even if this characteristic didn’t exist, that does not invalidate the methodology. It simply means that you won’t get very good statistical power, but the math is the same.

    Further, from the seemingly complicated methodolgy they used, I would conclude that the researchers did not trust the AQ test to be an adequate screening tool for autistics of all levels of functioning.

    But I am curious, where is there anything in the survey that says anything about vaccines?

    It doesn’t, and I wish it were recognized that the implications of findings like these are much more broad and much more important than the anti-vaccine controversy.

  11. Robert September 26, 2009 at 17:28 #

    The Wellcome Foundation is most grateful to all those who fight the ignorant anti-vaccine lobby. A large number of 6-month old babies are needed on whom the 2 latest swine flu vaccines can be tested. This is to determine what if any side effects may be experienced.

    You can read an outline of the require4ments on the BBC website at http://news.bbc.co.uk/1/hi/england/8271813.stm Please volunteer your children for this essential work for the greater good.

    Thank you.

  12. MJ September 26, 2009 at 18:07 #

    “The characteristic of the AQ test the researchers had to have hoped existed was simply this: Autistics will tend to score higher than non-autistics. It didn’t need to be perfect at all.”

    I would partially agree. They used this method to attempt to focus their efforts so that they found as many adults as possible in phase 2.

    But the problem is how this subset can then be related back to the population as a whole. If you can’t do this then the numbers don’t tell you anything. The relation between the two sets has not been shown in other populations, and you can’t assume the normal properties on the AQ 50 would apply since the test was modified extensively from the original.

    So the question is how you translate the 19 number back into terms of the screened and then the original population. The authors estimate that the screened population had 77 but it is the method used to arrive at this number that is the problem. As you said, the they used a complex methodology that is somewhat difficult to follow.

    When you combine this methodology with the lack of understanding of the subset and the lack of knowledge about the age distribution, I have to question the estimate of 1 percent across the entire adult population.

  13. Joseph September 26, 2009 at 18:46 #

    @MJ: You’re suggesting that for the methodology to work, the distribution of AQ-20 scores would have to be a normal distribution (which it could very well be.) I believe this requirement is not necessary, and I can illustrate with a simplified example.

    Suppose all non-autistics score 20 in the AQ and all autistics score 40. That’s not a normal distribution at all. Let’s say my arbitrary formula for phase 2 probability is:

    p = 0.005 * AQ

    Let’s say we start with 7000 adults, and there’s a “hidden horde” of 70 autistics among them, whom we have not identified yet.

    The total number of persons going to phase 2 would be 707. That’s 697 non-autistics, and 14 autistics, who are subsequently identified with the ADOS presumably.

    The unadjusted prevalence at this point would be 14 / 707, or 1.98%. That’s too high, as expected. We need to adjust at this point.

    We notice that the probability assigned to the 14 identified autistics is 0.2. We also see that the average probability assigned to the original 7000 was 707 / 7000, or 0.101. Hence, autistics were 0.2 / 0.101 (1.98) times more likely to be selected for phase 2 than someone in the general population.

    We divide the unadjusted prevalence (1.98%) by the autistic selection bias (1.98), and voila, we get 1% prevalence.

    I believe it works in general.

  14. Socrates September 26, 2009 at 20:03 #

    “have to question the estimate of 1 percent across the entire adult population.”

    You may, but the UK government won’t. This is the figure that they will use for planning adult services, probably for a decade or more.

    Would commit themselves to this level of spending if there was any doubt as to the validity of the study.

    Do you not think one of the highly educated Bean Counters at the Department of Health would’ve noticed significant flaws? Especially if it would lead to reductions in spending?

    And Terry Brugha – Umm… he’s not exactly Leicester’s answer to Wakefield, is he?

  15. Kev September 26, 2009 at 20:08 #

    Speaking of whom, an email is winging its way….

  16. Socrates September 26, 2009 at 20:39 #

    He’s got a bit of a track record in this sort of thing… Even been known to hang out with a certain gentleman by the name of Rutter – whoever he is…

    F— a d—! Tommey and Stone in the Red corner, Rutter and Brugha in the Blue.

  17. MJ September 26, 2009 at 21:38 #

    “Suppose all non-autistics score 20 in the AQ and all autistics score 40.”

    We don’t have that information for this modified AQ – we have no data about how well it will detect people with autism or what their scores would be.

    “That’s not a normal distribution at all.”

    You are close to what I am saying – I am not saying normal distribution but one with known properties. Specially the numbers of true positives and negatives as well as the false positives and negatives.

    “We notice that the probability assigned to the 14 identified autistics is 0.2.”

    Where do you get this probability from in your example?

  18. Ringside Seat September 26, 2009 at 21:45 #

    IMO,it’s interesting bracketing John Stone with the issue of adult autistic behaviors. There he’s been, for years, banging out misleading or outright untrue wheedles about this, that and the other, like he would know about these things. Over and over. He’s never right, and each thing he says is later duly exposed as nonsense. But that doesn’t matter to him. It’s not why he does it.

    Another guy to think about is David Thrower. Deer caught him out, outside Wakefield’s GMC hearing in the UK. Thrower is a parent who has spent years publishing vast long reports on “Autistic Enterocolitis”. They have indexes and executive summaries, numbered paragraphs, hundreds of medical reports apparently reviewed, but really only listed. All immaculately systematised.

    But then Deer asked him what “autistic enterocolitis” was. Thrower didn’t know. Deer asked him what “enterocolitis” was. Thrower didn’t know that either. He had no more idea about the meaning of the first line – the title – of his multiple gargantuan reports than Long John Silver’s parrot knew what pieces of eight were. The Cryshame loonies have posted this as a video, thinking it helps them for people to see Deer debate them in the street. It’s very funny.

    IMO, if these guys want to know about autistic traits in adults, they should head for the bathroom and spent an hour looking in the mirror. They could maybe do a little headcount, too, starting with “One”.

    Then, maybe with time, they might come home to themselves, and turn all that energy and focus to something useful.

  19. Laurentius Rex September 26, 2009 at 22:20 #

    Ever one not to go with the crowd I don’t believe it any more than Polly Tomney does but for a very different reason.

    Polly Tomney cannot believe it because cognitive dissonance does not allow her too, but sadly what worries me even more is that the same cognitive dissonance does not allow those on my side of the equation to deny it either.

    I am equivocal because it is not reasonable either to believe or disbelieve a single study until it is confirmed by additional evidence.

    This is why I despair of both sides, because the rules are the same, it is group think all along.

    Sorry to say that and rain on the parade, but I want to see something more convincing before I am convinced of what I already suspect that this study is actually an underestimation.

    • Sullivan September 26, 2009 at 23:21 #

      Laurentius Rex,

      it is fine to rain on parades as long as it isn’t something anyone will take offense at.

      First, I would say that I expected you to criticize this for a very different reason: people are missing the point of the study and its importance. The point, or value, of this study is that there is now official recognition that there is a large body of unidentified adult autistics.

      Second, with a study like this, “believing” it is not important. What is important is that there is the possibility and that people need to act.

      We can sit around and decide if there is any room to hammer yet another nail into the coffin that holds Andrew Wakefield’s hypothesis, or we can move forward.

  20. Socrates September 26, 2009 at 22:51 #

    Well, somewhere in here: Social support and psychiatric disorder: research findings and guidelines, by a certain Traolach S. Brugha, it say until it’s repeated it’s still ummm… what’s the scientific term? Not worth the ethically sourced, Recycled it’s printed on.

  21. MJ September 27, 2009 at 00:32 #

    “The point, or value, of this study is that there is now official recognition that there is a large body of unidentified adult autistics.”

    No, the point is that 19 adults with autism were found, the rest is only an extrapolation. In the UK if the rate was 1 percent there should be another 400,000 or so adults out there.

    I don’t understand why these adults, if they exist, would be so hard to find. In the area that I live there are over 1,500 children with autism in the public school system alone.

    If the numbers of adults with autism were anywhere even close then it should be relatively easy to find a couple hundred adults with autism. Yet to date that has not been done, and this survey is no exception.

    “We can sit around and decide if there is any room to hammer yet another nail into the coffin that holds Andrew Wakefield’s hypothesis”

    And again, show me what this survey has to do with vaccines. There is no mention of the MMR or vaccines in general anywhere in the survey. There is no data in the survey about vaccines so what is the relation?

    • Sullivan September 27, 2009 at 00:42 #

      MJ,

      No, the point is that 19 adults with autism were found, the rest is only an extrapolation. In the UK if the rate was 1 percent there should be another 400,000 or so adults out there.

      As usual, you come so close to getting it correct, then you veer off into the wrong conclusions. This time it is a bit more bizarre than most. According to you, they are supposed to find 400,000 adults when they tested about 600.

      I’m writing my own blog post on this. Feel free to misunderstand what I write and then complain that it doesn’t make sense.

  22. Joseph September 27, 2009 at 00:47 #

    Where do you get this probability from in your example?

    Once you identify the 14 autistics with the ADOS, you know their AQ scores, right? From that, you also know their assigned probabilities.

  23. Joseph September 27, 2009 at 00:58 #

    No, the point is that 19 adults with autism were found, the rest is only an extrapolation. In the UK if the rate was 1 percent there should be another 400,000 or so adults out there.

    This is basically a denial of scientific surveys. It reminds me of a video I watched once, which I don’t remember exactly, but it was something like this. A survey had been done of something such as religious views in the US. They had surveyed, say, 2000 people, and found that 20% were not religious. A religious person there, not very scientifically minded, reacted by proclaiming that the country has 300 million people, so why would the views of 2000 matter?

    If the numbers of adults with autism were anywhere even close then it should be relatively easy to find a couple hundred adults with autism. Yet to date that has not been done, and this survey is no exception.

    OK MJ, propose a methodology by which you find 200 autistic adults in private households. Let’s work out the cost. The NHS survey, as it is, probably cost millions of dollars.

    It’s true that if they had used a more conventional screening methodology, they could’ve found many more autistics, and the statistical power would’ve been better. But this was the first survey of its kind, so they probably couldn’t just assume that something like the AQ test would work for screening autistics in the general population. What would you use?

    • Sullivan September 27, 2009 at 07:23 #

      This is basically a denial of scientific surveys. It reminds me of a video I watched once, which I don’t remember exactly, but it was something like this. A survey had been done of something such as religious views in the US. They had surveyed, say, 2000 people, and found that 20% were not religious. A religious person there, not very scientifically minded, reacted by proclaiming that the country has 300 million people, so why would the views of 2000 matter?

      A similar argument–and one related to autism.

      Dr. Baron-Cohen’s group was involved in the recent study claiming that 1 in 100 (or even 1 in 68) children in the Cambridgeshire district has an ASD.

      No one argued that he only identified a fraction of the children.

      Anyone who claims that you can’t extrapolate based on testing a subset has no business discussing epidemiology.

  24. MJ September 27, 2009 at 05:28 #

    “Once you identify the 14 autistics with the ADOS, you know their AQ scores, right? From that, you also know their assigned probabilities.”

    How do you know the probability of any specific score being correlated with autism or the probability that a specific score or range of scores will be seen?

    Joseph, you seen to be missing the point that the subset cannot simply be extrapolated back to source population without understanding the selection of the subset.

    Suppose you start out with a population of 7,000 and select a subset of 5,000 using some arbitrary method, and then further select another subset of 600 from the 5,000 using another method.

    If I then tell you that the set of 600 had 19 left handled people in it and then ask you to tell me your best guess about how many left handled people were in the original 7,000, could you do it?

    The short answer is that you couldn’t do so reliably unless you knew how I selected the subsets. My criteria could have been to select everyone left handled or anyone whose last name ended with S the first time and then every left handled person or anyone whose first name started with Z the second time. In this case the 19 would be the entire population of left handed people.

    Or both sets could have been a randomized set who were matched using normal scientific protocols. If that case the 19 of 600 could be extrapolated back to the 7,000 in a straightforward way.

    But regardless, unless you know the properties of the subsets how do you extrapolate back to the original set?

    This is not a denial of science, this is what science is about.

    “OK MJ, propose a methodology by which you find 200 autistic adults in private households. Let’s work out the cost. The NHS survey, as it is, probably cost millions of dollars.”

    Autism is supposed to run in families so look at the parents of children with autism and find out how many of them would be considered to be on the spectrum. Take any decent size school district and you will find a large number of children with autism (for example, mine has over 1,500). If autism is indeed genetic then these families should have a higher than normal incidence of autism. You might not quite get to 200 in one area but you should get close. This isn’t quite a random survey but if the theory is right you should find quite a few adults that way.

    Or alternatively find a biological marker for autism that yields an empirical test that can be used. That would be the easiest way to put this question to rest.

    “But this was the first survey of its kind”

    Which is why the results need to be replicated and not blindly accepted.

    “so they probably couldn’t just assume that something like the AQ test would work for screening autistics in the general population”

    It wasn’t the AQ they used but a modified version of it. If they had used the AQ then we would have a better idea of what we were dealing with.

  25. MJ September 27, 2009 at 05:37 #

    “As usual, you come so close to getting it correct, then you veer off into the wrong conclusions. This time it is a bit more bizarre than most. According to you, they are supposed to find 400,000 adults when they tested about 600.”

    I’m sorry, where exactly did I say or imply that this survey was supposed to find 400,000 in a set of 600?

    My point was that finding 19 is hardly impressive when the group you are looking for is 400,000 in size. If they found a hundred, or even better a thousand that would be better. We would then be getting closer to determining a true population size.

    But as Joseph pointed out that would get expensive, which is what I suspect is the real problem.

    But your response was less terse than normal, you actually had three full sentences there. Although I have to subtract some points for the standard “bizarre” line.

    • Sullivan September 27, 2009 at 06:26 #

      MJ,

      you misunderstand the minute details and ignore the big picture.

      They found 19 autistics in a group of about 600. That’s 3%. Now, either the prevalence is close to that, or it actually is quite impressive that they found that many autistics.

      That is the minute detail that you got wrong.

      The big picture isn’t that there is likely a 400,000 large group that is unidentified. The big picture is what do we as a society do to support this group. For people like me this is enlightened self interest. I’d like to see a better life for autistic adults by the time my kid grows up. We don’t get there by denying the existence of adults. We get there by learning now what supports adults need and ramping up the system to provide those supports.

      To you, the strong possibility that there are hundreds of thousands of adults unidentified and under supported is a big joke, and a challenge to the vaccine causation hypothesis.

      You are willing to sacrifice the well being of autistics to support your misguided cause.

      That stance is morally wrong and detrimental to the future of my child.

  26. Joseph September 27, 2009 at 06:12 #

    If I then tell you that the set of 600 had 19 left handled people in it and then ask you to tell me your best guess about how many left handled people were in the original 7,000, could you do it?

    Yes. Suppose the 600 had been selected completely at random. Then I would conclude there were 222 left-handed people among the original 7,000.

    That’s too easy, though. So what if the selection was biased, based on a formula of some sort?

    (Note: You say “The short answer is that you couldn’t do so reliably unless you knew how I selected the subsets” – but we do know how the selection was done, unless you’re talking about the rate of participation refusal, a completely different topic of discussion.)

    The 19 left-handed people have been identified, and I must know what their assigned probabilities of selection were. I also know what the probability of selection was for all the original 7000 (0.086).

    Let’s say the average probability assigned to the left-handed people identified had been 0.43. Then, roughly, there are probably 44 (222 / 5) left-handed people among the original 7000.

    Granted, that’s a bit of a simplification. How they actually did it in the paper is explained there.

  27. Joseph September 27, 2009 at 06:16 #

    Autism is supposed to run in families so look at the parents of children with autism and find out how many of them would be considered to be on the spectrum.

    I should’ve been more specific. I was talking about a prevalence study that locates 200 autistic adults living in private households.

    If locating 200 autistic adults is all you want, you could simply look them up in California DDS records, for example.

  28. Joseph September 27, 2009 at 06:40 #

    Also, while MJ is right that this is the first study of its kind, and usually you should always wait for a replication (a point Larry also made), it’s not like we couldn’t see this coming. There is prior science on this matter.

    Really, are we to believe that subsequent studies won’t find autistic adults? That’s nonsense. The writing is on the wall.

    I predict that denying the existence of autistic adults will be a recognized form of denialism in a few years.

    I also predict that another milestone will be the realization that the “tsunami” of autistic children becoming adults did not have an impact on housing costs and so forth, as claimed by some. I’ve seen the data.

  29. Laurentius Rex September 27, 2009 at 10:29 #

    The truth is that this survey was done on the cheap and was just thrown together. It is a piece of academic hackwork, the best that could be done under the circumstances, by people who in my opinion do not have the qualifications for this kind of population survey looking at from entirely the wrong perspective.

    Just because something has an academics name on it, does not make it valid.

    A bad survey is perhaps worse than no survey in that it misleads and rather than sheds further light because it just allows all the criticism it picks up of those who are psychologically disinclined ever to accept a reasonable prevalence of autism, something which cannot be objectively measured in the first place any more than the spread of artistic ability in the population, or the numbers of people who enjoy DIY. (and are actually any good at it)

    • Sullivan September 27, 2009 at 16:28 #

      The truth is that this survey was done on the cheap and was just thrown together

      If you do the math, you should find that the phase-1 interviews represented over 5 man-years off effort. That doesn’t account for any overhead or for analysis time. 600 ADOS exams were given.

      Just because something has an academics name on it, does not make it valid.

      True. Also, just because something isn’t perfect, does not mean you can’t use the information. Is there a downside to using this to advocate for better supports and a greater effort to identify adult autistics? Is there a downside to asking for research into whether adult autistics should be supported in ways different from other disabilities? I can’t see it.

  30. Mildred September 27, 2009 at 12:22 #

    Sullivan,
    “To you, the strong possibility that there are hundreds of thousands of adults unidentified and under supported is a big joke, and a challenge to the vaccine causation hypothesis.”

    It would be incredibly sad if the valuable material in the study was overshadowed by those wishing to argue any part of it in respect of vaccines. This study is an insight into the mostly unchartered realms of adults with autism. With the best will in the world it is unlikely to give an exact picture of autism in adults and that can be argued till the cows come home, but as Sullivan points out, it’s a valuable oppportunity to learn and to prepare for the future in respect of all the autistic children, who before their parents know it, will become part of the adult population with autism. In an Article “If there’s no autism epidemic, where are all the adults with autism” by Roy Richard Grinker
    http://www.unstrange.com/essay.html
    he offers up some very sound explanations for why there has previously been an apparent lack of adults with autism, ranging from initial misdiagnoses in childhood, to the unlikelyhood of psychiatrists diagnosing autism in an adult, in the absence of evidence of early childhood markers in their notes.

    The fact that numerous adults may be living with undiagnosed autism is certainly no joking matter, nor should the apparent lack of numbers in the adult population be used to bolster any argument that vaccines cause autism in children. Grinker’s suggestions for this apparent lack of numbers, are entirely uncomplicated and a sad reflection on how these people have been badly let down. Unfortunately, we can to nothing to alter that situation, but we can learn from it,we can stop burying our heads in the sand and denying the existence and scale of autism in the adult poulation and we can use studies such as this one to help prepare for adulthood in respect of all the children with autism. To deny the existence of the volume of adults with autism is not only doing them a huge injustice but it is also turning our backs on a learning opportunity and the chance to do better for both them and the youngsters in the future.

    Grinker replies to the question in the title of where are all the adults with autism…..

    “As surprising as it may seem, they are living and working among us.”

  31. MJ September 27, 2009 at 15:34 #

    “They found 19 autistics in a group of about 600. That’s 3%. Now, either the prevalence is close to that, or it actually is quite impressive that they found that many autistics.”

    You clearly don’t understand prevalence, so let me ask you a question. Does this set of 600 represent the population as a whole or is it some carefully selected subset?

    “To you, the strong possibility that there are hundreds of thousands of adults unidentified and under supported is a big joke, and a challenge to the vaccine causation hypothesis.”

    I’m sorry, where did I say that? It is nice of you to put words in my mouth but I think I would have remembered saying this. Some would even say that this would constitute a “bizarre” claim.

    And again, what does this survey have to do with vaccines? You ignored the question the first time yet you are still repeating this claim. So please point out the section of the survey that deals with vaccines.

    “The big picture isn’t that there is likely a 400,000 large group that is unidentified.”

    No, the big picture is that we don’t know how many adults are out there.

    You have come to the conclusion that adults is as common in adults as in children yet the available evidence does not support that conclusion. No research to date has found this “hidden horde” yet you continue to believe that they are out there. You pick up on weak results, like this one, and announce that this is the proof that you were right all along.

    This is exactly what you like to criticize the “anti-vax” movement for – coming up with the conclusion and trying to shove the data into it.

    “You are willing to sacrifice the well being of autistics to support your misguided cause.
    That stance is morally wrong and detrimental to the future of my child.”

    Oh, do get off the high horse. We all have children with autism that we are trying to help and no one is out to “sacrifice the well being of autistics”.

    I think we all agree that there are a large number of children with autism working their way to adulthood that will require support. Where we differ is that I believe that the data available points to an actual increase in the prevalence of autism rather than a constant rate.

    Now, if you think that view is somehow morally wrong you tell me where.

  32. Joseph September 27, 2009 at 15:52 #

    And again, what does this survey have to do with vaccines?

    Obviously, the “epidemic” idea is a pillar of the modern anti-vax movement. Without it, I’m not sure how it would be able to survive in any meaningful way.

    It’s not a surprise that someone such as MJ would be so defensive. Autism prevalence studies are usually not nit-picked this much.

    Does it make sense to continue to deny the existence of autistic adults? I’m baffled by that approach. How long can it be sustained? All you can hope for is that no more science is done on the issue.

    And it’s always the same with anti-vaxers. It’s one “I told you so” moment after another. You guys are practically always wrong, and you continue with the denials after you’re shown to be wrong.

    It was like that with thimerosal removal. It was like that with Wakefield’s integrity. It was like that with the results of the Omnibus proceedings. And it will be like that with the epidemic thing.

  33. Laurentius Rex September 27, 2009 at 16:58 #

    It was done on the cheap, relatively speaking as to what a more comprehensive study might have achieved (and might still yet)

    I happen to know that there was a cock up over the funding at departmental level.

    This can best only be considered like the first experimental trench in an archeological dig, the rest remains underground.

    I think it is altogether too early to assume too much at all, especially as the extra disciplinary input from the sociological deconstruction of autism is severely lacking.

    Autism is not just something that has prevelance, it is part of the fabric of current society and it’s practices, and those who in this case were commissioned to come up with something are as much as anything else the end product of the machine in self referential circular defining of the phenomenon.

    Every study has it’s own peculiar history and does not come newly minted from nowhere, like any work of literature it is bound by so much external to itself.

  34. MJ September 27, 2009 at 21:16 #

    “Does it make sense to continue to deny the existence of autistic adults?”

    This isn’t about denial, this is about science and evidence based medicine. Either you believe in it or you don’t. If you believe in it then you know full well that your positions needs to be backed by evidence – which in this case it is not.

    The weight of the evidence to date does not support the idea that one percent of all adults have autism. If you think I am wrong then point of the studies (other than the current one) that support your position.

    If you don’t believe in science then you tactics like trying to recast the debate –

    “Obviously, the “epidemic” idea is a pillar of the modern anti-vax movement”

    Or you attempt to make light of valid concerns –

    “Autism prevalence studies are usually not nit-picked this much.”

    Or you resort to casting doubts on the character of the person making a criticism –

    “It’s not a surprise that someone such as MJ would be so defensive.”

    “And it’s always the same with anti-vaxers.”

    So which is it Joseph, science or woo?

    If it is science then you know full well that the methodology used to create the subsets that contained the 19 subject have not been validated by other research. That does not mean it is necessarily wrong or that they are right. It means that you should treat the results with skepticism until they have been confirmed – especially since the results do not agree with past results.

    If these results are confirmed by other groups then I will change my opinion, but until then I stand by my statements.

  35. Joseph September 27, 2009 at 21:54 #

    The weight of the evidence to date does not support the idea that one percent of all adults have autism. If you think I am wrong then point of the studies (other than the current one) that support your position.

    I do not agree. I’ve already provided that evidence. There are several studies, not all recent ones, that show autism to be common in various groups of adults. For example, among adults living in institutions for the developmentally disabled, autism is fairly common (Shah et al. 1982; Matson et al. 2007.) ASD is relatively common among adults with ADHD (Stahlberg et al. 2004) and those with developmental language disorder (Bishop et al. 2008.) ASD has found among university students (Baron-Cohen et al.) When autism is found in adults, it’s very often undiagnosed (Nylander & Gillberg, 2001.)

    Further, there is indirect relevant data, such as data on diagnostic substitution in special education.

    In fact, the burden of proof should be on those claiming an “epidemic” – that’s the non-default extraordinary claim.

    It means that you should treat the results with skepticism until they have been confirmed – especially since the results do not agree with past results.

    What past results? I’m guessing you’re referring to studies on children that used completely different criteria, ascertainment methods, and operated under a completely different social construction of autism.

  36. MJ September 27, 2009 at 23:05 #

    Joseph –

    Shah et al. 1982 would be dealing with a much earlier set of criteria so I am going to address it.

    There were several papers published by Matson in 2007 but none of them looked to be on topic, which one specifically are you referring to?

    Stahlberg et al. 2004 says nothing about prevalence of autism in adults, just that there are co-occurring conditions.

    Bishop et al. 2008 talks about diagnostic substitution but does not address the prevalence of autism in adults.

    Nylander & Gillberg, 2001 did look for adults with autism, but not in the general population and says nothing about a specific prevalence level.

    None of the items you cited where on topic and only the last one actually looked for adults with autism but in a different population.

    Also, you are making some serious logical errors in linking an epidemic in children with a specific prevalence in adults – these are two separate issues. You can provide or disprove one without the other automatically being true. These are two different groups and we have no reason to think that the rates in both groups are the same. Especially since we can’t even find the a constant prevalence in children.

    And, more importantly, a lack of evidence for an epidemic, real or otherwise, does not imply a specific prevalence level in adults.

    And most importantly, science does not work that way. You cannot assert that what you say is true and that the counter argument must prove it wrong. The evidence must support your position before it is accepted.

    So, what support do you have for a one percent prevalence in adults?

  37. Joseph September 27, 2009 at 23:50 #

    There were several papers published by Matson in 2007 but none of them looked to be on topic, which one specifically are you referring to?

    @MJ: That would be “The validity of the autism spectrum disorders-diagnosis for intellectually disabled adults (ASD-DA).” I believe they identified over 300 adult autistics in this study, BTW.

    Stahlberg et al. 2004 says nothing about prevalence of autism in adults, just that there are co-occurring conditions.

    ADHD is common in adults (probably as many as 4% of all adults have it.) I think it’s of interest that 30% of someone’s adult ADHD patients had co-occurring ASD.

    Bishop et al. 2008 talks about diagnostic substitution but does not address the prevalence of autism in adults.

    You do not think diagnostic substitution has to do with prevalence? Either way, so long as developmental language disorder (DLD) is common, the fact that 31% of adults with DLD have co-occurring ASD should be of interest.

    Nylander & Gillberg, 2001 did look for adults with autism, but not in the general population and says nothing about a specific prevalence level.

    No, but if 17 of 19 (90%) identified “definite autistics” were previously not known to be autistic, doesn’t that tell you that 9 out 10 in this population were missed, and that this is of interest to the reliability of past autism counts?

    You can obviously question each piece of data to some extent. There’s probably some selection bias in all the samples, and so forth. But it’s a stretch to presume all these studies had to be wrong by an order of magnitude or something.

    You can provide or disprove one without the other automatically being true. These are two different groups and we have no reason to think that the rates in both groups are the same.

    Yes, it’s possible the prevalence of autism in adults is not naturally the same as that of children. By definition, however, since autism had to have been present before the age of 3, the prevalence of autism in adults should only be the same or lower than that of children. If we find that the prevalence of autism in adults is close to that of children, there’s no “epidemic.” For something to be an “epidemic,” presumably the difference in prevalence should be large.

    And most importantly, science does not work that way. You cannot assert that what you say is true and that the counter argument must prove it wrong.

    You’re mistaken. You see, there’s an “epidemic” hypothesis. There’s no such thing as a “no epidemic” hypothesis. That would only make sense if an epidemic had been demonstrated in the past, and the new hypothesis challenged accepted scientific though. The one proposing the new hypothesis is the one who has the burden of proof. What you’re doing is called “the fallacy of demanding negative proof.” Look it up.

    So, what support do you have for a one percent prevalence in adults?

    I had suggested the prevalence of ASD in adults would be at least that, and I probably mentioned 1.5%. Did I just completely guess it? No. It was possible to come up with an educated estimate from existing data.

    For starters, the prevalence of ASD among the intellectually disabled didn’t appear to be different in adults than it was in children. Two studies told me this.

    For adults without intellectual disability, there were some AQ test studies. About 2% of randomly selected adults consistently score 32+ in the AQ-50 (a replicated result.) In one study they did interview some 32+ scorers, and about 60% met threshold DSM-IV criteria. There’s room for statistical and sampling error here, but that’s high.

    In essence, the NHS study is rigorous confirmation of a figure that could already be approximately presumed.

  38. Laurentius Rex September 28, 2009 at 00:55 #

    But why oh why all this groupthink from both sides, this rigid adherence to studies one wants to believe as if they have the status of gospel pronouncements.

    By all that is sacred, isn’t it about time we truly declared our independence of establishment surveys (The NHS) of establishment views (and wrong ones at that DSMIV indeed!!!) of OUR condition.

    This is not about science at all it is about rights OUR rights to be.

  39. Emily September 28, 2009 at 02:42 #

    And let’s pay attention to this:
    “There is no indication of any increased use of treatment or services for mental or emotional problems among adults with ASD. This is borne out by the recent National Audit Office publication “Supporting People with Autism Through Adulthood”.”

    Forget all the antivax red herrings, can we please? Let’s take a look at these autistic people wandering around out there in the population, not exhibiting any “increased use of treatment or services.” How are they? How are they living? What do they show about the future of autistic children today, having grown up likely without as much as we have today in the way of interventions?

    I note also that in addition to the 1% population prevalence, there is the prevalence among men vs. women, also a match with what we see in children. As @Joseph said, “In essence, the NHS study is rigorous confirmation of a figure that could already be approximately presumed.”

  40. Emily September 28, 2009 at 02:46 #

    I posted a comment and it somehow disappeared into the ether.

    Forget the antivax red herrings, can we, please? Please?

    This study has identified adults living with autism. How are they? How are their lives? They apparently don’t use services any more than anyone else. They represent the future of autistic children today, minus today’s interventions, etc. Why aren’t we talking about them, instead of fighting with people whose ideas are getting filed away in the Flat Earth Files?

    And the prevalence among men vs. women is a direct reflection of the pediatric population, too. All quite telling. As Joseph said, “In essence, the NHS study is rigorous confirmation of a figure that could already be approximately presumed.”

    • Sullivan September 28, 2009 at 04:39 #

      “I posted a comment and it somehow disappeared into the ether.”

      Sorry, Emily. I think that got stuck in the spam trap. I think it is visible now.

  41. MJ September 28, 2009 at 03:02 #

    “That would be “The validity of the autism spectrum disorders-diagnosis for intellectually disabled adults (ASD-DA).”

    Ok, that one found 156 adults with co-occurring ID and either autism or pdd-nos. I looked at the abstract but it isn’t clear whether the participants only had an ID diagnosis going into the testing or not. It is also not clear what the age distribution of the autism group is. I did not read the study text as of yet so the only thought is that this isn’t unexpected. It is well known that ID and autism can go hand in hand and that it is hard to differentiate between the two.

    As for the other studies (excluding Nylander & Gillberg), your arguments are all “interesting” but none address the prevalence of autism in adults. There are always many hints or interesting facts that can be used to bolster an argument but unless the question is examined directly that is all you have, hints and interesting facts.

    “No, but if 17 of 19 (90%) identified “definite autistics” were previously not known to be autistic, doesn’t that tell you that 9 out 10 in this population were missed”

    I think you are skewing that result somewhat. The study found an additional 17 adults with autism out of a group of 1,323 psychiatric out-patients that had undiagnosed autism. This means that about about 1.28 percent of this population had autism. Yet this study also mention another population (499) where 3.2 percent had autism, which means the first population actually has a lower than expected rate.

    Also, if you notice, the purpose of this was to validate how well the ASDASQ identified patients with autism. And in this case it identified 31 patients who might have autism with 19 of them actually having it. This is the step that is missing for the modified AQ that was used in the UK survey – we have no idea how well this modified AQ did at identifying people with autism. Compare the 31 and 19 to the only hard numbers we have from the survey, about 600 and 19, and you can see that this modified screen AQ screen is very poor and selecting only people with autism.. So the extrapolation from the population of about 600 back to the main population is a large unknown yet is at the heart of the reported 1 percent figure.

    “You’re mistaken. You see, there’s an “epidemic” hypothesis. There’s no such thing as a “no epidemic” hypothesis.”

    And as I said, the epidemic hypothesis and prevalence of autism in adults is not the same issue. Your hypothesis is that there are a large number of adults ( ~ 1 percent) that, hereto undetected and uncounted, have autism. You have to support what you are saying with data, which you have so far failed to do. It is not enough to say that there is no support for a different hypothesis therefore yours must be correct.

    “Did I just completely guess it? No. It was possible to come up with an educated estimate from existing data.”

    So what exactly is the difference between a “guess” and an “educated estimate” and why is it an “educated estimate” when you do it but when others do it is is a guess?

    “I had suggested the prevalence of ASD in adults would be at least that, and I probably mentioned 1.5%”

    What you are saying is you opinion and not an idea that has been tested using scientific methods. Nor is it supported by the best direct evidence available. You can speculate as to the prevalence, and who knows, you might even be right.

    But, your opinion is just that, your opinion and does not constitute scientific support for your ideas. Opinions are quite fallible and subject to error – this is the reason that the scientific methods exist, because we cannot trust our judgement.

    You, of all people, should know this.

    So I ask you again, what support do you have for your assertion that the prevalence of autism is one percent (or higher) in adults? You have quoted nothing from the literature that directly pertains to the prevalence in adults, no survey (other than the current one), no samples, just speculation and “interesting” theories.

    “In essence, the NHS study is rigorous confirmation of a figure that could already be approximately presumed.”

    No, in essence the NHS survey is based on statistical extrapolations from a very small group of unknown and unverified properties to the population as a whole, and as such needs to be verified and replicated by other groups before it is accepted.

  42. MJ September 28, 2009 at 03:07 #

    Laurentius Rex you said –

    “This is not about science at all it is about rights OUR rights to be.”

    This is entirely about science. Autism is not a civil rights movement, it is a medical disorder.

    So tell me, what rights exactly do you feel that you are lacking that others have been granted? Please list them, and if possible, examples of where these rights have violated.

  43. Laurentius Rex September 28, 2009 at 08:37 #

    MJ this is precisely where you are wrong. Autism is only classified as a medical disorder because of the historical consequences of how it came to be in our present lexicon.

    If you compare it with Dyslexia for instance, and equally neurological “syndrome” if you wish to describe it thus, you will find that Dyslexia is “diagnosed” and “treated” outside of the medical framework. “Diagnosis” is a wordsfrom the medical lexicon but if you substitute “identified” instead then you have something approaching more neutral.

    Autism is a phenomenon which is naturally occuring it is no more medical than any other human disposition and this is why it is a human rights struggle, because of the way in which this difference has come to be and is increasingly devalued because of the demands of current society.

    Science BTW is about more than test tubes and biology, what you do not realise is that the methodology of epidemiology comes from the abhored Social sciences, yes that is where for the most part the mathematics are derived!

    According to Autism Speaks we don’t even have the right to life let alone liberty and the pursuit of happiness.

  44. laurentius rex September 28, 2009 at 09:19 #

    And I would also point out to MJ (Who probably does not know the context of the survey) that the reason it was carried out was political, it was a responce by the Government to lobbying regarding inadequate services available to a large number of “invisible” autistics.

    It was not concieved of as science, it was merely put out to whom the civil servants believed to be competent academics able to carry out what is essentially a piece of social not medical research.

    And FWIW I have been ie for the design of similar “epidemiological” studies into the prevelance of ‘disability’ in general in Coventry and it turned out in hindsight the estimates of those surveys albeit increasing the number acknowleged thereafter in corportate planning, it was still an underestimate.

    As for the difficulties of randomised house to house surveys (and this is the only methodology that stands a chance of being successful) I know them well.

    I believe in comprehensive area surveys rather than randomisation.

    Take a select number of streets in a number of wards, and interview everybody who will co-operate.

    You might think that if the prevelence of X were one in fifty, all you have to do is interview everyone on one bus, and one would turn up.

    Not so, they might all be on the same bus, or they might not be on the bus at all, one needs a sufficiently large number of buses to figure that out.

    On any bus I ever catch there will always be one autistic, but there will also be at least one dyslexic and at least one photographer, and they all will be me, this too is the error of surveys that look for one thing in isolation, it is way out of context.

  45. Joseph September 28, 2009 at 13:39 #

    This is not about science at all it is about rights OUR rights to be.

    Matters of fact are resolved by science, Larry. Science is the only reliable way of knowing about such matters. (Some people do dispute this point, but that would be way off topic.)

    Would it matter if autism is something that primarily only children have? I think it would, in a practical sense. There’s no way to resolve this question other than for science to look into it.

  46. Joseph September 28, 2009 at 13:43 #

    @MJ: Madson et al. was once discussed over at Interverbal if you’re interested.

    Other than that, I would just say that if can look at all the existing evidence going back to Lorna Wing’s work in the late 70s and early 80s, plus the NHS study, and still think, well, it’s still possible autistic adults practically don’t exist, that’s incredibly closed-minded. I hope cognitive dissonance kicks in at some point.

  47. laurentius-rex September 28, 2009 at 16:02 #

    It all depends what you mean by science, but I will still warrant that what you (joseph) mean by science is not capable of resolving much to do with autism at all, and indeed even less capable of resolving the problems of the global economy and the palestinian question.

    If on the other hand you drop the term “science” and substitute rational investigation, you will conclude that the metanarratives of science are not themselves independent of the need for rational investigation as to what universal laws might exist to predict the way in which the agents of science act.

    Autism is not a medical phenomena it is a social one, medicine is one small artefact of a greater social system in any case.

    The science of Autism for the most part has failed to acknowlege the science which governs the way it is investigated, to what disciplinary fields the majority of the funding is invested. Very little goes toward solving the real problems in either Autism or Autistic peoples lives. What is not needed is sharper genetic definition, Autism claims no special privelege as a “disorder” “condition” or existential essence.

  48. Socrates September 28, 2009 at 16:09 #

    Michelle Dawson

    “According to what is currently known, my view (and this is only my view, not a consensus) it that it’s most useful and productive to consider autism as a cognitive phenotype.

    And along with the researchers I hang out with, I have some ideas, which are published in the scientific literature, about what this cognitive phenotype primarily is.

    I disagree that atypical perception, which is often enhanced (as in, this would be considered good, if found in nonautistics), is just sort of a bad side-effect or “comorbidity” of autism.

    This would be a bit like saying that absolute pitch is a “comorbidity” of autism.

    This would be a bit like saying that autistics with exceptional abilities in drawing or music must have really, really bad “cormorbidities.” And so on.”

  49. Joseph September 28, 2009 at 18:07 #

    It all depends what you mean by science, but I will still warrant that what you (joseph) mean by science is not capable of resolving much to do with autism at all, and indeed even less capable of resolving the problems of the global economy and the palestinian question.

    The only problems science solves are problems of knowledge. Other types of problems are for engineers, doctors and politicians to solve, presumably using some knowledge.

    Autism is not a medical phenomena it is a social one, medicine is one small artefact of a greater social system in any case.

    We’re in agreement, but a lot of times (if not always) social constructs have correlates in nature. Further, social constructs can be and are studied scientifically.

    Very little goes toward solving the real problems in either Autism or Autistic peoples lives.

    Is that a failure of the scientific method, or is it simply that people in power don’t have the priorities (and perspective) we might hope?

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