Did the IACC act in bad faith?

17 Jan

A slew of Press Releases from Safe Minds and the NAA appeared today decrying the IACC’s re-vote on two pieces of autism/vaccine research. SafeMinds say:

In a highly unusual departure from procedure, government representatives to the Federal Interagency Autism Advisory Committee (IACC) voted this week against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress

NAA said:

In an unprecedented move on Wednesday, the Interagency Autism Coordinating Committee (IACC) removed previously approved vaccine safety research from the Strategic Plan for Autism Research objectives…. The committee’s action is in direct opposition to the majority of its public members who support vaccine research, and to the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

So, there’s a number of issues that need addressing. Lets take them in the easiest to address first.

1) The allegation that the re-vote is ‘highly unusual’ or a ‘departure from procedure’ or ‘unprecedented’.

Well, it may well be unprecedented. Thats because this is only the second time that vote was taken on this issue. The first time they voted one way, this time they voted another. If this was the 300th vote then NAA might have a point. As it is, they don’t. They’re using these as Scare Words to make the situation sound alarming.

I’ve talked to a number of people who attended the IACC meetings both in person and via the phone. The claim that the re-vote was a ‘highly unusual departure from procedure’ is rubbish. Why? *Because there is no procedure* . One person I spoke with said:

[There is]…no requirements other than to vote on approving or not approving the plan. There is not even a requirement to vote on individual initiatives!

Another person said:

[T]here are some rules–e.g they can’t hold a meeting later than the agenda says. In December, Lyn [Redwood] was calling for people to work into the night, but Insel canned it saying the rules are very clear on that.

But in the matters of voting, re-voting etc everyone was in total agreement. There is no procedure. This puts an instant black mark against the NAA and Safe Minds c;aims and reveals it as an attempt to hype up the situation by using Scare Words.

2) The claim that the CAA specifies vaccine specific language

The NAA say in their press release that:

The committee’s action is in direct opposition to…the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

This is quite simply not true. Nowhere in the CAA is that sentence used. In fact, nowhere in the CAA do the words ‘vaccine’, ‘vaccination’, ‘immunize’, ‘immunization’, ‘inoculate’, inoculation’, ‘thimerosal’, ‘mmr’ etc appear. Don’t take my word for it. Download the Act and search for yourself. I guess somehow, the NAA made a terribly unfortunate accident and confused the CAA itself with this Senate discussion _about_ the act. A discussion which has no bearing whatsoever on the legal _contents of the Act itself_ .

3) The insinuation that because _they_ voted for vaccine specific research, that they speak for the majority of the autism community

The NAA’s press release quotes a Ms. McIlwain as saying:

It’s no wonder parents around the country are questioning vaccines when government agencies refuse to investigate legitimate vaccine safety concerns

Safe Minds Lyn Redwood said:

“Advocacy groups and legislators have been marginalized in this process.”

As we’ve seen, legislators have not been marginalised. Certain advocacy groups may well have been. Boo-hoo. Its about time we asked ourselves the question: do these co-called advocacy groups actually accurately represent individual opinion?

In the Summer of 2008, the NIMH asked for public comments about the IACC’s Strategic Plan. This was following the NIMH’s Director Tom Insel statement to Lyn Redwood of SafeMinds during the Nov 21st 2008 IACC meeting:

We’ve received public comments on both sides and comments that make it clear that vaccines have no place in this report.

If one visits the public comments page (see link above) and does a search for the word ‘vaccine’, this is what you get:

Out of 148 total responses, 52 (35%) specifically mention vaccines, asking for research. 18 (12%) specifically mention vaccines, asking for the IACC in various ways to discount the vaccine idea. This leaves 78 (53%) who are so uninterested in the vaccine idea they don’t even mention it.

Or, to put it another way, 65% of responders did not ask for vaccine research.

I think this is pretty clear. When 65% of people who are interested enough in autism to respond to a request for public comments don’t ask for vaccine research then the 35% who do cannot claim to be in the majority, or to hold the leading opinion on the matter.

So lets recap. The re-vote was not unprecedented. It did not go against procedure. The CAA does not mention vaccines anywhere in the entirety of the bill. The majority of people who are interested in autism aren’t interested in vaccine research.

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101 Responses to “Did the IACC act in bad faith?”

  1. Kev January 24, 2009 at 11:46 #

    Billy, yo’re on your last warning. This sort of thing:

    I don’t like how you pretend to be so nice about autistics while you use such disrespect towards a real autistic in addressing his criticisms of the study.

    is snide in the extreme. Leave it out or leave yourself out.

  2. alyric January 24, 2009 at 17:29 #

    Kev

    This Billy Cresp could be a clone of Mitchell in thinking processes. Perhaps they even share an IP address?

  3. daedalus2u January 24, 2009 at 18:29 #

    Why is my perspective valid? Because I understand the work, and where it fits in with the other research in autism. Anyone else who understood it in that context would see that the research was important too.

    As a researcher working on trying to understand the physiology of autism, their work has been extremely important to me. This research is especially important because it fills in a gap in the research that has been done on autism. A gap that is in the autism research because other researchers have a blind-spot in that area. Research that first shows that there is a blind-spot in our ability to perceive something is the most important research that there is. It is the most difficult research to conceive, propose, fund, do and publish because until it is published, understood and accepted virtually everyone thinks it is wrong.

    They have shown that many of the conclusions of other researchers are wrong. Autists don’t have a deficit in top-down mentalizing; they have superior abilities in bottom-up mentalizing. They have superior abilities that are dismissed as pathology by the NTs who do not have them.

    Many NTs, including NT researchers do not have the ability to perceive people with autism as having any positive features, even when those positive features are glaringly obvious. This is a generic attribute of human nature. That which is different is labeled pathological and bad and is denigrated, even if it is superior.

    There is a Japanese proverb, “the nail that sticks up gets hammered down”.

    This is the essence of xenophobia. Anything different is bad and is to be beaten down and/or destroyed. This is the essence of bullying. Bullies latch onto any weakness, anything that is different and use it to injure/destroy the individual. This is how many NTs treat ASDs, via bullying to try and harm them. That is how many NTs treat other NTs, as in racism, sexism and other forms of xenophobia.

    Every individual has strengths and weaknesses. We should try to encourage individual strengths and try and configure society so individual weaknesses are not so detrimental to individuals.

    You are completely missing the point. If there is even a single person with autism without “damage”, then “damage” is not a necessary aspect of autism. People with autism can be injured and damaged just as NTs can be injured and damaged. Injury and damage is not a necessary or sufficient component of autism. Understanding autism without damage is absolutely essential to understand the more complicated autism with damage (if there is such a thing) where there is interaction between autism (which is complicated) and damage (which is also complicated).

    NTs don’t have savant abilities. That a savant ability occurs in someone with autism and never in someone without autism disproves the idea that “damage” has decreased all abilities except the savant ability.

    If autism was caused by “damage” bringing down all but the savant abilities, we would expect to see the savant abilities of autism as part of a normal distribution of those abilities in the entire population. This is not observed. Savant abilities can be many sigma above the mean, and completely off any normal distribution. That was exactly and precisely the point of Dawson et al 2007.

  4. Arthur Golden January 24, 2009 at 19:18 #

    To Jon Mitchell and Bill Cresp:

    In comments from Michelle Dawson about this blog entry, she states that both of you have called her “dishonest.”

    Could each of you please confirm that you have called Michelle Dawson “dishonest?”

    If so, is there a link to your statements using the specific word “dishonest?”

    I believe it is of utmost importance to verify this factual information about the use of the specific word “dishonest” so I hope you will respond to my request for this information.

    Arthur Golden

  5. Billy Cresp January 24, 2009 at 21:05 #

    daedalus, considering all those superior abilities found in their research, why don’t they do such research on both the low and high functioning on the spectrum, so it can be known if those abilities exist in general for those on the spectrum? I doubt there have been enough studies by Mottron that have dealt with the low-functioning.

    Significant weaknesses in important skills can’t be accommodated. Why not just cure the weaknesses? Who would want to endure having weaknesses in basic things?

    “Injury and damage is not a necessary or sufficient component of autism. Understanding autism without damage is absolutely essential to understand the more complicated autism with damage” That sounds like a great idea. I hope someone is really looking into that in their research.

    I’m not sure exactly what you mean by savant abilities, but I wonder about any mental ability that would be high in a person. Even though savant abilities of autism are above the normal distribution, doesn’t mean damage couldn’t have been involved. What about the parents of autistics who themselves frequently are high up in the normal distribution of just about all abilities? What if they genetically passed on many of those abilities, and what if the particular damage only affected their children in the way that prevented some abilities? I don’t think savant abilities have that much to do with Dawson’s study.

    Arthur, I didn’t call her dishonest although I implied she may have been.

  6. daedalus2u January 24, 2009 at 22:48 #

    What I mean by savant abilities include calendar, calculator, digit memorization, savant draftsman, savant musical ability, hyperlexia, and perhaps some others.

    All individual researchers have limited time and resources. That they choose one important topic to investigate (that no one else is investigating) over other important topics is not something they should be faulted for. They are not looking for a cure for cancer either. Why don’t you fault the other 99.9% of the autism research community for not pursuing the research you fault Dawson and Mottron for not pursuing? You could pursue that research yourself.

    At best, the hypothesis that autism = damage is not proven. If it is not proven, then alternate hypotheses should continue to be investigated. I happen to think it has been disproven and is not going to be a productive avenue of research. I don’t criticize researchers who continue to pursue that avenue of research provided they do so with scientific rigor.

    I am the only one pursuing the connection between autism and nitric oxide (so far as I know). I know that is because I am the only one who appreciates how important that connection is. I have great empathy for researchers who are correct and are working against the majority view in the field. I won’t give them any slack for that, but they do get kudos from me. Their work has been very useful to me in formulating my low NO causes autism hypothesis.

  7. Billy Cresp January 25, 2009 at 00:04 #

    I would also fault many of the other researchers who aren’t doing enough research on low-functioning autistics, and who are doing research without representative samples. I’ve heard about some of the problems in autism research and I wish it would get better.

    I think the question of autism’s impairments being damage or not isn’t a simple question. I wonder if it could be damage in some cases, genetic in some others, or maybe a combination in other cases, because I doubt that the etiology is the same in all cases of autism.

  8. Arthur Golden January 25, 2009 at 03:44 #

    Bill Cresp wrote:

    “I would also fault many of the other researchers who aren’t doing enough research on low-functioning autistics, and who are doing research without representative samples.”

    I wish to note that the Université de Montréal website that the “Summary of Research Activities” of Dr. Laurent Mottron states:

    “Started and direct currently a specialized clinic for clinical investigation and research on pervasive developmental disorders without mental deficiency (Hôpital Rivière-des-Prairies, Montréal, PQ), since 1996.”

    However, the research paper cited by Michelle Dawson above gives the affiliation of Dr. Mottron as the “Pervasive Developmental Disorders Specialized Clinic” and deletes the important phrase “without mental deficiency.” Would Bill Cresp consider such a deletion to be “dishonest?”

    My almost 37 year-old son Ben, who is completely nonverbal and described as “low-functioning autistic” (with a Wechsler IQ score of about 25) earlier today spelled out on a letterboard through “full-support” Facilitated Communication (FC) that his brain is autistic but is mind is not autistic. Previously, he has communicated that his brain is damaged but FC allows him to communicate just fine because FC allows his mind with superior intelligence to get around his physical brain damage. I am not aware of autism research that is focusing on such issues (including the plans of the IACC, the subject of this blog entry). I suspect that almost all autism researchers (including those who support FC, who do not seem to be represented on the IACC) do not wish to consider the possibility that the physical brain and the human mind are separate entities.

    Arthur Golden

  9. Billy Cresp January 25, 2009 at 04:15 #

    Arthur, I would consider that deletion to be dishonest.

  10. Arthur Golden January 25, 2009 at 04:36 #

    Thanks to a link from Harold Doherty (in a blog entry where he complains about the research planned by “even” the IACC), I just discovered the following information posted January 15, 2009 as a Press Release at “Autism Speaks Introduces New High Risk-High Impact Initiative:”

    “…Concurrent with this launch, the Autism Speaks HR-HI initiative has already assembled collaborative research workgroups and awarded two million dollar to five ambitious proposals across a diverse range of areas. These projects will investigate topics including the poorly-understood cognitive abilities of individuals who do not use spoken language; the incidence and biology of metabolic dysfunction; the generation of more rapid and inclusive methods for acquisition of brain imaging data; and the development of novel means for large-scale biomaterial collection….”

    “…The first area of need identified by the HR-HI Steering Committee addresses the subgroup of individuals with autism who are non-verbal and often referred to as “low-functioning.” Non-verbal individuals are nearly always presumed to have low intellectual capabilities, in part because they have no way of demonstrating their cognitive capacities. Yet some of these individuals have developed the ability to type and communicate their thoughts through alternative means, leading to a startling possibility that many more individuals may be cognitively intact but simply unable to access the ability to communicate. If true, this would have profound implications for their treatment and education, but unfortunately very few researchers are working with this subgroup. Therefore, two of the five HR-HI proposals were designed to focus on developing the means to characterize and, hopefully, treat such non-verbal, presumptively “low-functioning” individuals….”

    I plan to bring this information to the attention of my son Ben and ask him if he wishes to be in contact with Autism Speaks about “the poorly-understood cognitive abilities of individuals who do not use spoken language.” This Press Release from Autism Speaks seems to respectfully consider the intelligence of presumptively “low-functioning” individuals (contrary to the impression I have been given by opponents of Autism Speaks).

    Arthur Golden

  11. Mary Ann Harrington January 25, 2009 at 07:26 #

    I agree with Art Golden. While working with this population, I was led to believe that the brain is more of a diffusing device than an emanating one. In order to accept this view as valid, researchers must be able to accept that the “soul or mind” is separate from the body. The information available to these less integrated souls is vast and easily accessible; however, the brain, possibly due to improper pruning, has difficulty has difficulty organizing and expressing it in context of the physical body. With assistance, the chaotic of flow of these individual can be subdued. Information does come through, but in my experience can be distorted. I have waited many years for someone to take the initiative to examine this phenomena using brain imaging equipment. It has so much to teach us about consciousness.

    If I can be of service, let me know.

    Mary Ann Harrington

  12. Arthur Golden January 25, 2009 at 14:56 #

    Mary Ann Harrington wrote:

    “I have waited many years for someone to take the initiative to examine this phenomena using brain imaging equipment. It has so much to teach us about consciousness.”

    Thanks to information on the Autism Speaks website about using PubMed, I just discovered today that research is being done “using brain imaging equipment” although I do not yet understand if it covers the specific phenomena you wish to have examined. I think one problem may be the usual one that such research is being done with persons with “high-functioning” autism. However, it seems that Autism Speaks is now funding research for better “using brain imaging equipment” with younger and “low-functioning” persons. Since such a discussion is getting away from the original blog entry, I hope to further discuss these matters on the autismfc Yahoo!Group to which Mary Ann Harrington is also a member.

    Trying to get back to the IACC Strategic Plan for Autism Research objectives, I know it no longer includes vaccine safety research, but can anyone tell me what is still includes?

    Since the government is authorizing (but not necessarily appropriating) tens of millions of dollars every year for autism research, I wonder if the IACC is including the research relevant to persons with “low-functioning” autism as are the new Autism Speaks research grants? I share Bill Cresp’s concern that autism research does not include representation of persons with so-called low-functioning autism, a concern that I do not believe has been adequately answered by autism “self-advocates.”

    Arthur Golden

  13. Joseph January 25, 2009 at 23:02 #

    If so, is there a link to your statements using the specific word “dishonest?”

    Jon Mitchell did say that Dawson et al. contained “blatant” biases. I tried to ascertain why Jon thinks the potential selection biases of Dawson et al. are “blatant,” to no avail. He also asserted that Dawson et al. is “propaganda for neurodiversity.”

    Evidently, Michelle Dawson is correct to conclude that Jon is insinuating she, Dr. Mottron and colleagues are dishonest.

  14. Joseph January 25, 2009 at 23:11 #

    That study hasn’t been replicated and doesn’t have a representative sample.

    As I pointed out to Jon, the study has been replicated for Asperger’s. See Hayashi et al. (2007).

    That the sample is not representative is not demonstrated, just speculated on based primarily on the male:female ratio. We don’t know if other studies on autistics in the same region would’ve produced the same male:female ratio. Additionally, it’s not clear how the male:female ratio might affect the gap between Weschler and RPM scores.

    Even if the phenomenon were unique to autistic males, that’s still worthy of scientific investigation, don’t you think?

  15. daedalus2u January 26, 2009 at 02:47 #

    Even if it were unique to a small subset of autistic males (or of any group) it would be worthy of scientific investigation. IMO

  16. jon Mitchell January 27, 2009 at 00:51 #

    Joseph, I read the abstract of Hayashi and it seems to only say, that the Raven’s were compared between asperger’s and a control group, nothing about comparisons between scores between the Wechsler so apparently you are mistaken about this.

    As far as whether or not Michelle Dawson and Lauren Mottron are being dishonest or not. I can only say that people can read my posts on the subject, read the study itself which I linked to and then read the quotes that I have cut and paste from what Michelle and Dr. Mottron have said and let them read articles about Michelle in Wired and Newsweek and other media outlets on what they say about the study and let them judge for themselves. Maybe Michelle would like to address my actual criticisms rather than saying that I am implying that they are dishonest.

  17. jypsy January 27, 2009 at 01:50 #

    “let them read articles about Michelle in Wired and Newsweek and other media outlets on what they say about the study and let them judge for themselves.”

    http://www.quicktopic.com/27/H/vJvhV4fDnBgw7/m8802

    “In further response to Mr Cresp, I’ll start with publicity. Mr Cresp still has not provided sources, not what statements from
    Dawson et al.’s (2007) authors he is specifically objecting to.

    However, the way Dawson et al. (2007) was publicized has been addressed here on TMoB. For example, as I wrote here, the authors showed no interest in having a press release, and did not anticipate (and I should have, so it was my fault) that we
    would be given one anyway, without any input from us.

    Also, when a media outlet published false information about Dawson et al. (2007), I both put corrections on this board and
    sent them to the media outlet, which ignored them. This problem with science reporting is hardly unusual and may be typical of
    how the media reports science stories. I could go on and on giving examples (here’s one
    http://news.bbc.co.uk/2/hi/science/nature/6988088.stm and another one
    http://www.badscience.net/2009/01/the-telegraph-misrepresent-a-s
    cientists-work-on-climate-and-then-refuse-
    to-correct-it-when-he-
    writes-to-them/ ). Ben Goldacre’s (him again!) blog and book are filled with examples, and Dr Goldacre himself has had his work misrepresented in the media, as he has noted in his mini-blog.

    What I’ve done in several instances is to address inaccurate reporting here on TMoB, as much as I can.”

  18. Michelle Dawson January 27, 2009 at 04:22 #

    In response to Mr Mitchell, he is again misrepresenting Hayashi et al. (2008). Of course he’s free to misrepresent the work of others, as he has demonstrated, though I don’t see how this helps autistics.

    Also, I have reponded to Mr Mitchell’s statements about Dawson et al. (2007), as well as Mr Cresp’s (which are more or less the same as Mr Mitchell’s), on the TMoB board, accross several messages.

    As I showed in some detail on TMoB, so far, none of Mr Mitchell’s (or Mr Cresp’s) statements about Dawson et al. (2007) has included any genuine criticism. However, I still responded to their statements in as much as they could be responded to.

    I also described what genuine criticism would involve. Presuming that those who disagree with you are dishonest (or other similar presumptions) is not genuine criticism.

  19. Arthur Golden January 27, 2009 at 05:31 #

    Jonathan Mitchell wrote on his blog “autism gadfly:”

    “…One of the questions is, are the subjects truly representative of autistics who might be classified as intellectually retarded? [Followed by some analysis by Jonathan Mitchell]…Therefore, it would appear that Dawson’s sample excluded a substantial number of subjects who might be classified as low functioning.”

    As I recently commented on his blog, I think Mr. Mitchell has raised a valid question and I wish to note that in various places (including this blog Left Brain/Right Brain) Michelle Dawson and her friends have strongly disagreed with him. While I agree with Mr. Mitchell, I think it is futile to try to disagree with Michelle Dawson (as I told him on his own blog before he decided to post his most recent comment on this blog). However, (as I wrote on the blog of Jonathan Mitchell) I wish to raise another specific point in agreement with his question which I do not find that he specifically raised. In the research paper it states that the autistic children and the autistic adults were all diagnosed with autism disorder at the Pervasive Developmental Disorders Specialized Clinic, which is headed by Dr. Laurent Mottron. As I already pointed out on this Left Brain/Right Brain blog, the English webpage of Dr. Laurent Mottron describes it as “a specialized clinic for clinical investigation and research on pervasive developmental disorders without mental deficiency.” So it seems to me that if all the persons with autism come from this clinic for persons “without mental deficiency,” it would automatically exclude anyone who has a low IQ score.

    I do wish to note that Michelle Dawson just responded to the comments of Jonathan Mitchell and Bill Cresp and I already made this “criticism” on this blog entry but I realize I was not so explicit in relating my criticism to the research paper of Michelle Dawson. I hope Michelle Dawson will now specifically respond to my comment. I do recognize that there could be another explanation for the term “without mental deficiency” on the webpage of Dr. Laurent Mottron and I am open to consider such an explanation from Michelle Dawson.

    Arthur Golden

  20. jon Mitchell January 27, 2009 at 06:07 #

    Hi Michelle, Joseph just presented the abstract for Hiyashi(2007), not anything for a subsequent study by Hiyashi that might have been published in 2008. I conceded in my post that I had only read the abstract of HIyashi 2007, not the entire paper. In the abstract they make no mention of the Wechsler, only the Raven’s test. They seem to only compare the Raven’s test between two groups, not the Raven’s versus the Wechsler in the same groups as your study in psychological science does? What am I missing. How am I representing this study. Do they actually do something with the Wechsler in this study that is not mentioned in the abstract? Why would they just mention the Raven’s in the abstract I wonder? If I am representing this study, it is certainly not my intention, at most I may be incorrect about it. How am I incorrect about it?

  21. jon Mitchell January 27, 2009 at 06:25 #

    Gernsbacher, M.A., Dawson, M., & Mottron, L. (2006). Autism: Common, heritable, but not harmful. Behavioral and Brain Sciences, 29, 413-414. [pdf]

    Hi Alyric, I pasted above the article in question. This is the reference. They are clearly saying that autism is not harmful.

    As far as you and jypsy’s one-sided presentation of the arguments I got into on ABFH’s blog, I will just say this: They are the one’s who started it by being abusive and insulting to me and calling my mother a witch and calling me a traitor and other abusive comments. They were the aggressors. Perhaps I should have taken the high road and turned the other cheek and not responded in kind and I now have some regret for stooping to the level of those who were attacking me. but sometimes turning the other cheek is hard to do when I am constantly being abused by you and others in the ND movement. I am not going to comment on all of the other mistruths and misrepresentations that you and the rest of the people here are saying.

    However, I would like to thank you and all the others for the increased traffic you have helped to generate to my blog.

  22. jon Mitchell January 27, 2009 at 06:30 #

    Gernsbacher, M.A., Dawson, M., & Mottron, L. (2006). Autism: Common, heritable, but not harmful. Behavioral and Brain Sciences, 29, 413-414. [pdf]

    This comnment did not seem to post the first time. Hi Alyric, here is the reference of the article in question where these people say autism is not harmful.

    As far as your one-sided treatment of the fights i have gotten into with some of the people on the abfh blog, I will just say I was personally attacked, maligned, insulted and had my mother called a witch and I was just responding in kind. Perhaps I should have taken the high road and turned the other cheek but sometimes that is hard to do. I do have some regrets about responding in kind, but there is a reason for it and two sides to this story no matter how much you and anyone else want to put spin on this thing.

  23. Michelle Dawson January 27, 2009 at 06:43 #

    Mr Mitchell has made false claims about a published paper (Hayashi et al., 2008) he hasn’t taken the trouble to read. In my view, this is not genuine criticism. Also in my view, if you want to make claims about a published paper, you should read it first.

    Because Mr Mitchell’s position is based on his assumption that I’m dishonest, etc., there is no point in my providing him with accurate information.

    As I wrote above, I did respond to Mr Mitchell’s and Mr Cresp’s statements, over on TMoB–but these responses were for other readers there, some of whom may be interested in a closer look at what autism advocacy standards entail.

  24. jon Mitchell January 27, 2009 at 09:02 #

    You’re right Michelle, I should just read the paper myself without asking you. I will go to UCLA biomed tomorrow and see if i can locate it. I should have just emphasized it was unclear as i had only read the abstraction. Also, I did not understand about the digit span test not being in the newest Wechsler, i posted the corrections on autism’s gadfly. I still would be interested in a comparison between the older version of the WISC with the digit spans and RPM though.

    I also understand at the most recent IMFAR there were some presentations which did not entirely replicate your findings. I will see if they ever get published in a peer reviwed journal and see if your findings hold up to scrutiny.

  25. jon Mitchell January 27, 2009 at 09:14 #

    Hi Michelle I see that Poustka et. al. who presented at the last IMFAR have some data on WISC vs RPM and have a 3:1 ratio of males to females, so it seems it is possible to have a more representative sample than was provided in your study

  26. Ben Golden January 27, 2009 at 09:24 #

    I am asking my father to preface this and all my future messages on the internet that:

    I write using a letterboard and my father has to input my messages on a compuer because directly pushing my fingertip on a computer keyboard can cause me excrucriating pain.

    Given my constraints, how can I arrange to post comments on the discussion board and blog of Michelle Dawson?

    Ben Golden

  27. jypsy January 27, 2009 at 12:44 #

    “As far as you and jypsy’s one-sided presentation of the arguments I got into on ABFH’s blog”

    You brought up institutionalization here and there and were asked about it here, I merely pointed to your opinions stated elsewhere and gave a link so people were free to read the whole ugly mess (and made it clear the ugliness was not being done by a single person). Please explain how it was a “one-sided presentation of the arguments I got into on ABFH’s blog”.

    I hope your comments over there aren’t just an effort to generate traffic to your blog. I have found since I posted that the comments there were “ugly”, yours have slipped to something even darker than that. This is no spin and I acknowledge that you were provoked, still you did write those words, they did come from you. Likewise, the other commenters there are responsible for their words and actions. It’s all very, very, sad.

  28. jypsy January 27, 2009 at 15:32 #

    Mr. Mitchell,
    You speak on your blog about “all those folks” who are beating you up here on this thread – could you name them here please.

    I don’t believe, as you’ve stated, that I presented a “one-sided presentation of the arguments I got into on ABFH’s blog” and I’m curious to know whether you count me among those (whoever they are) who are beating you up here. I certainly don’t believe I am. If you do, please show me exactly where and how.

  29. jon Mitchell January 27, 2009 at 16:31 #

    Yes, you are by just saying what I said in response to someone else who said very abusive things about my mother jypsy. Also, I see that Alyric has joined you in presenting the one-sided version in quoting me out of context. That is okay though, as you give people the link to the food fight in ABFH’s post, which regrettably I took place in though I was clearly not the aggressor to anyone who reads this objectively. They can read the entire thread in a context which you and Alyric will not provide here and anyone can judge themselves and see that abuse was hurled at me and I only responded in kind.

    Also you might like to reread Deadealus sp?? comment about me being a house autistic on here. I believe this constitutes abuse and apparently he claims to be an autism researcher won’t even sign his own name and just attacks me personally without presenting any facts.

    BTW, thanks for providing the links to here and also Michelle’s TMOB board. I posted them on my blog so now people who read my blog can learn the entire story

  30. Clay January 27, 2009 at 18:17 #

    Jonathan said:

    “I will just say I was personally attacked, maligned, insulted and had my mother called a witch and I was just responding in kind.”

    Yup, all of that, except that Nobody called your mother a witch. (How do you twist things so?) We only pointed out that you HAD to have learned your attitude about autism from her, and that because she didn’t love and accept you as you are, but intrinsically taught you that autism is “a terrible disability that needs to be cured, you never really accepted autism yourself. It’s futile for you to wish for a cure. It’s futile to oppose “Neurodiversity”, because all that means is “acceptance of the fact that people are neurologically different, but have the same rights, as people.

    Resistance is futile. 😉

  31. Clay January 27, 2009 at 19:51 #

    Okay, that bolding didn’t work out right. It was only supposed to be “a terrible disability that needs to be cured” marked in bold. Sorry.

  32. jypsy January 27, 2009 at 19:55 #

    “Yes, you are by just saying what I said in response to someone else who said very abusive things about my mother jypsy”

    I never said “what” you said, only that you had made a statement – “Mr. Mitchell has elsewhere (today) posted quite a strong opinion about who he believes belongs in an institution, how they should be treated there and why they belong there”. I later posted the link – to the blog post, not your comment, where one would need to read through the comments to find and read your comment in the context it was written in. I provided a warning: “WARNING: the comments (by a number of people) are very ugly.” that in *no way* singled you out.

    Read my comments here again and tell me: Where I beat you up
    Where my one sided comment is
    Where I said “what” you said
    Where I provided any link to anything out of context

    I’m not condoning what went on over there. As I said above, I acknowledge that you were provoked, but I was not a part of any of that so don’t try to make me part of it. You brought up the institutionalization of autistics here and those are your words over there. I did not repeat them anywhere, I did not link directly to them. I am not beating you up. I am not your enemy.

    If you want to take me to task for something specific that I actually did or said, feel free. But show me, with direct quote so I understand, where I did or said it.

  33. Clay January 27, 2009 at 20:07 #

    Damn, even I wish that jypsy had been my mom! 😉

  34. daedalus2u January 27, 2009 at 21:16 #

    From my reading of the abstract of Hayashi et al 2007, it is clear they administered at least one type of intelligence test different than RPM, so as to obtain groups of FIQ matched subjects.

    Jon, I did not use the term house autistic. The way the Field Negro uses the term House Negro, it can refer to anyone of any race. I see this type of behavior as an example of Stockholm syndrome.

    http://en.wikipedia.org/wiki/Stockholm_syndrome

    The same mechanism that keeps abused children and battered women attached to their perpetrators. I see it as different and as more nuanced than being a Quisling which is why I mentioned it.

    I am not sure why you consider yourself abused by my comment? You do align yourself with the anti-neurodiversity groups. What ever neurodiversity is for, you are against. There is considerable oppression of people with autism and of other people with neurological disorders; oppression that neurodiversity advocates are attempting to stop. If you think that oppression is legitimate, justified, and right (as I presume you do) then why do you feel abused by being labeled as someone acting on that belief?

    I didn’t go through the link to comments on abfh. My comment was based on looking briefly at your blog and at your comments here. As for me being an autism researcher, I think I am, and have posted some of my findings on my blog. If you don’t think it is useful, then don’t read it.

  35. Billy Cresp January 27, 2009 at 21:43 #

    daedalus, I think that such use of the term house negro is absolutely abominable. Neurodiversity aren’t the only ones against oppression of those with autism, and neurodiversity doesn’t limit themselves to railing against those forms of oppression. Think of how oppressive neurodiversity is to the many highly impaired autistics, when they oppose cures and treatments, and push that monstrosity called the social model of disability.

  36. daedalus2u January 27, 2009 at 23:51 #

    My understanding of neurodiversity doesn’t oppose cures and treatments for any disorder, when they are scientifically and medically warranted and actually improve the lives of the people who receive the treatments.

    What neurodiversity opposes (as I understand it) is treating people with mental differences as worse than dead, such that any and all “treatments” no matter how fraught with potential for harm are to be administered because people with autism are better off dead from an ill conceived treatment than alive with autism.

    My understanding of what “cure” means to the anti-neurodiverse is for people to switch from being ASD to being NT. According to my understanding of what it means to be on the spectrum that can never happen. There can be some movement; people with autism can become more social. They can never become NT. The fundamental neuroanatomy has to change for that to happen, and neuroanatomy can’t change that much post birth.

    People with autism can never learn to fly through the air, or walk on water either. To maintain that someone with autism is better off dead if they cannot be “cured” and switched to being NT is to dehumanize people with autism.

    As I understand, the anti-neurodiverse don’t want “improvement”, they only want “cure”, where “cure” means being NT. The anti-neurodiverse are not interested in treatments that turn people with “low-functioning” autism into people with “high functioning” autism (let me note that I do not like these terms and use them only to illustrate what the anti-neurodiverse do not want, I appreciate that the terms are misleading and wrong).

    That the anti-neurodiverse do not want improvement is evident from their antipathy toward adults with autism who live and function in society. The anti-neurodiverse don’t want to change society to make the functioning of autistic individuals easier, even though that change is trivial compared to understanding the physiology and neuroanatomy of autism and then figuring out how to change it to improve the lives of people with autism. Society could change today (or could have changed years ago). It is the anti-neurodiverse who are resisting change because they don’t want to abandon the way they think about and treat people on the spectrum.

  37. Billy Cresp January 28, 2009 at 00:33 #

    There is no reason to think that the anti-neurodiversity people don’t want improvement, because there’s no reason to think that they don’t mean improvement when they call for cure. What else would cure be about besides removing impairments and bringing improvement? To suggest that the “curebies” are only looking for turning autistics into NT is absurd and it isn’t a fair attack on those who want cure.

    I doubt that the pro-cure people would mind if non-impaired high functioning autistics were the result of a cure. I’ve seen enough of the pro-cure people enumerating the abilities that they want the low-functioning to have the most, the same capabilities that the high-functioning have.

    “That the anti-neurodiverse do not want improvement is evident from their antipathy toward adults with autism who live and function in society” That does not make sense. I endorse their antipathy towards the high-functioning autistics/aspies who demonize a cure for the impairments of the low-functioning, while the high-functioning don’t endure the burden of impairment that the low-functioning do. Those HFA would not be functioning in society without their high abilities, and I consider it a lie for them to say that people can function in society without those abilities. The anti-neurodiversity people don’t think it’s fair for the HFA to keep all the ability for themselves. The neurodiversity pushers haven’t been decent towards the autistic adults who dare to question their nonsense.

  38. Joseph January 28, 2009 at 01:21 #

    Those HFA would not be functioning in society without their high abilities, and I consider it a lie for them to say that people can function in society without those abilities.

    In your view, Billy, does Stephen Hawking “function in society” or not?

    The neurodiversity pushers haven’t been decent towards the autistic adults who dare to question their nonsense.

    By that you obviously mean they haven’t been decent torwards none other than Jon Mitchell.

    You’re generalizing, for one.

    I don’t necessarily have anything against Jon, but I gotta say, it’s hard to tell sometimes the stuff he writers from the stuff John Best writes. I wouldn’t just assume that the “abuse” he’s been getting has much to do with his being autistic. In fact, I know of other autistics who are pro-cure and who don’t get that sort of treatment from “neurodiversity.”

  39. daedalus2u January 28, 2009 at 02:16 #

    Billy, you are blind to your own rhetoric. The HFA want to change society so that the LFA can function better in it. The anti-neurodiverse want to bully the HFA until they stop trying to change society so LFA can function better in it.

    Any treatment that improves the function of someone with autism will only add to the functionality they can achieve once we change society so that the LFA can function better in it.

    You can’t bully a LFA into a HFA. You can bully a HFA into a LFA. That is what a meltdown does. Bully a HFA enough and they will have a meltdown and become LFA. Bullying is the default operating mode of the anti-neurodiverse. Abandoning the default operating mode of bullying is what the anti-neurodiverse need to do to improve the function of the LFA and HFA that they deal with. That is what the HFA are trying to get the anti-neurodiverse to do.

    I appreciate that abandoning the default operating mode of bullying is difficult to do. If you look at the various web sites and blogs of the anti-neurodiverse, they all just reek of bullying. Spending effort changing that default operating mode of bullying will do more for people with autism than spending that same effort looking for a “cure”.

    You don’t need to know medicine, physiology, anatomy, psychology or anything to know that bullying is wrong. All you need to do to stop bullying is to know that it is wrong and harmful. Everyone already knows that. What the anti-neurodiverse lack is the will and the ability to stop bullying.

  40. Billy Cresp January 28, 2009 at 03:38 #

    daedalus, I think you are blinded by your own delusions of some cultural antagonism between NTs and those on the spectrum. Society can’t be changed to make LFAs function better, and can’t prevent their incapabilities from stopping them from being able to participate in many activities.

    One’s functioning capability doesn’t depend on society. What LFA or anyone else would want to depend on the charitable actions of society and their phony sentimental acceptance? Society can’t remove the indignities of being mentally impaired, except by removing the impairments themselves.

    I’m tired of you talking about bullying like this situation is about a bunch of mean schoolchildren hurting a bunch of little vulnerable ones. I’ve had enough of those neurodiversity aggressors, who are not vulnerable, being made out into likely victims. I think they’re the harassers who likely started the vicious rhetoric.

    “You can bully a HFA into a LFA” That doesn’t make any sense to me. The HFAs that I’ve seen receive rebuttals to their neurodiversity arguments, don’t seem traumatized to me. They shouldn’t be moaning about people saying harsh things to them as if they can’t handle it.

    Who would be gullible enough to think things could get better by being nicer to the neurodiversity pushers? I’ve looked at how some autism advocates who somewhat strayed or seemingly strayed from neurodiversity ideas, have been viciously treated by the neurodiversity pushers. The neurodiversity oppressors won’t be welcoming if their opponents try to be nicer and more compromising. I think that will only make things worse.

    I hardly have ever seen anyone as vicious, hateful, oppressive, greedy, hypocritical, and deceptive as the neurodiversity advocates. There is no reason to deal with them through anything but harsh language and rhetoric.

    “Spending effort changing that default operating mode of bullying will do more for people with autism than spending that same effort looking for a “cure”.” Many of those who have a real stake in the issue aren’t about to be duped by the neurodiversity propaganda and deceptions and conciliate to the neurodiversity liars, letting them have a grip on control so they can do whatever they want in oppressing the LFA, keeping them down.

    There is not a lot of consensus as to who should or shouldn’t be “bullied” or what the justifications would be. I don’t think there should be peace in this matter until there is no opposition to cure and the equality it entails.

  41. Ben Golden January 28, 2009 at 17:57 #

    [As Ben wrote on January 27, 2009:

    I am asking my father to preface this and all my future messages on the internet that:

    I write using a letterboard and my father has to input my messages on a compuer because directly pushing my fingertip on a computer keyboard can cause me excruciating pain. ]

    All current scientific research on autism is not needed because it is based on false premises about human nature. My current activities are most important because they help all human beings and other autistics should try to do the same.

  42. daedalus2u January 28, 2009 at 18:55 #

    Billy, I appreciate that what I said doesn’t make sense to you because you do not have the capacity to understand it. That is the fundamental problem of NT and ASD interactions. NTs understand things in NT terms. It takes great effort for NTs to understand ASDs on ASD terms, and many NTs are unwilling or incapable (or both) of making that effort. That is the fundamental problem of the anti-neurodiverse. It is not the assessment of the perpetrator of the effects of bullying that matters; it is the assessment of the victim.

    ” One’s functioning capability doesn’t depend on society.” Oh really, so, any woman can have equal functioning capacity in the US as in Saudia Arabia as in China as in Tibet as in Japan as in Afghanistan as in Somalia? Would you have equal functioning capacity in each of those places? When you don’t understand the language or the customs and stick out like a sore thumb? When you stick out like a nail which is to be hammered down?

    ” I think they’re the harassers who likely started the vicious rhetoric.” Oh really, so it was the neurodiversity crowd who first made death threats against the anti-neurodiverse? It was the neurodiverse who first threatened the children of the anti-neurodiverse? Do you have any links to document this, or are this simply yet another false bullying statement by someone who is anti-neurodiverse?

    ” The anti-neurodiversity people don’t think it’s fair for the HFA to keep all the ability for themselves.” I am not sure I understand this, are you saying that there is some type of “conservation of abilities” between HFA and LFA and that for LFA to gain, then HFA have to lose? I appreciate that the anti-neurodiverse do want to take abilities away from HFA, they do that all the time via bullying. Are you saying that the anti-neurodiverse believe there is some “life is fair” principle that will then transfer those lost abilities to LFA? Or is it more of a “dog in the manger”, “misery loves company” mindset that motivates the anti-neurodiverse? If abilities can be transferred, why don’t the anti-neurodiverse transfer some of their abilities to the LFA?

    Why are virtually all of the neurodiverse blogs uncensored while virtually all of the anti-neurodiverse are censored? Is the anti-neurodiverse message so fragile that it can’t take the slightest bit of criticism? Why is it that discent from the anti-neurodiverse groupthink can’t be tolerated? Intolerance for discent is a characteristic of cults and authoritarian regimes.

  43. Joseph January 28, 2009 at 21:31 #

    One’s functioning capability doesn’t depend on society.

    @Billy: You realize that’s bullcrap, right? Go to Google Scholar and type in “disability accessibility.”

  44. Billy Cresp January 28, 2009 at 22:49 #

    No Joseph. Those things about disability accessibility don’t pertain to much besides physical disability, and won’t get rid of the incapabilities that come from mental impairments. Society can’t remove or bring ability and functioning to someone. Accessibility won’t cause someone to have the capability to do the same task someone else can do, unless someone else’s help with a task is counted as capability.

  45. daedalus2u January 29, 2009 at 00:09 #

    I posted a response this morning which has been held up in moderation. I am at a different computer now and didn’t bring that text with me. It will be several hours before I am back at that computer and can edit it to try and get past the spam.

  46. Clay January 29, 2009 at 02:15 #

    jypsy said (to Jonathan Mitchell):

    “I hope your comments over there aren’t just an effort to generate traffic to your blog. I have found since I posted that the comments there were “ugly”, yours have slipped to something even darker than that.”

    Further evidence that Jonathan admits to things without even realizing he’s admitting them:

    http://alyric.blogspot.com/

    (You can skip to the “comments” section.)

  47. Joseph January 29, 2009 at 02:54 #

    No Joseph. Those things about disability accessibility don’t pertain to much besides physical disability, and won’t get rid of the incapabilities that come from mental impairments.

    Oh really? Go back to Google Scholar and search for “cognitive disability accessibility” now.

  48. daedalus2u January 29, 2009 at 03:09 #

    This is what I tried to post this morning that didn’t go through.

    Billy, I appreciate that what I said doesn’t make sense to you because you do not have the capacity to understand it. That is one of the fundamental problem of NT and ASD interactions. NTs understand things in NT terms. It takes great effort for NTs to understand ASDs on ASD terms, and many NTs are unwilling or incapable (or both) of making that effort. That is the fundamental problem of the anti-neurodiverse. It is not the assessment of the perpetrator of the effects of bullying that matters; it is the assessment of the victim.

    One’s functioning capability doesn’t depend on society.

    Oh really, so, any woman can have equal functioning capacity in the US as in Saudia Arabia as in China as in Tibet as in Japan as in Afghanistan as in Somalia? Would you have equal functioning capacity in each of those places? When you don’t understand the language or the customs and stick out like a sore thumb? When you stick out like a nail which is to be hammered down?

    I think they’re the harassers who likely started the vicious rhetoric.

    Oh really, so it was the neurodiversity crowd who first made death threats against the anti-neurodiverse? It was the neurodiverse who first threatened the children of the anti-neurodiverse? Do you have any links to document this, or are this simply yet another false bullying statement by someone who is anti-neurodiverse?

    The anti-neurodiversity people don’t think it’s fair for the HFA to keep all the ability for themselves.

    I am not sure I understand this, are you saying that there is some type of “conservation of abilities” between HFA and LFA and that for LFA to gain, then HFA have to lose? I appreciate that the anti-neurodiverse do want to take abilities away from HFA, they do that all the time via bullying. Are you saying that the anti-neurodiverse believe there is some “life is fair” principle that will then transfer those lost abilities to LFA? Or is it more of a “dog in the manger”, “misery loves company” mindset that motivates the anti-neurodiverse? If abilities can be transferred, why don’t the anti-neurodiverse transfer some of their abilities to the LFA?

    Why are virtually all of the neurodiverse blogs uncensored while virtually all of the anti-neurodiverse are censored? Is the anti-neurodiverse message so fragile that it can’t take the slightest bit of criticism? Why is it that dissent from the anti-neurodiverse groupthink can’t be tolerated? Intolerance for dissent is a characteristic of cults and authoritarian regimes.

  49. Arthur Golden January 29, 2009 at 03:12 #

    To Joseph and Billy Cresp:

    You are both right but we all need to improve.

    Without physical assistance, my soon-to-be 37 year-old son Ben Golden can only communicate on the level of a preschooler. With physical assistance, Ben Golden communicates on the level of an ancient Hebrew prophet, his statements (written in Hebrew) are currently posted on at least 2 websites and hundreds of volunteers distribute his statements to many thousands of avid readers throughout Israel.

    Fortuitously, in the ultraorthodox Jewish community, physical independence is not the priority that it is in modern Western culture. Modern Western culture needs improvement in many areas and I would recommend the ultraorthodox Jewish community as a model. Further scientific research is not needed before doing so because the information about proper ethical human behavior toward other human beings was revealed over 3,000 years ago and just needs to be implemented.

    Arthur Golden

  50. daedalus2u January 29, 2009 at 03:13 #

    My comment didn’t go through again.

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