Wednesday, March 04, 2009

AoA's Token Aspie Reacts to BRAINHE Study With Error-Filled Article

Anti-vaxers have a lot to be upset about lately. First, it turns out that Wakefield probably falsified his data. Second, they took a beating scientifically and legally at the Omnibus Autism Proceedings. Third, their attempt to counter-attack by recycling a weak vaccine injury case from 2007 and acting as if it were new and "hidden" did not bear fruit.

To top it off, they've recently come to realize that neurodiversity is actually studied by scientists and sociologists. To be clear, neurodiversity is not the opposite of anti-vaccination. One has little or nothing to do with the other. Anti-vaccination has to do with causation, science, autism quackery and public health. Neurodiversity is a social concept, essentially independent of causation, which is not exclusive to autism by any means. Anti-vaxers, nonetheless, see neurodiversity as a threat for various reasons that are beyond the scope of the post.

In my last post I wrote about the BRAINHE Project report on neurodiversity. There's one paragraph in the report that I think is worth quoting again.

13 of the participants viewed their neurodiversity as an entirely negative matter. These participants frequently used negative or medical terminology when talking about their labels which indicated that they felt in some way broken or damaged. Of the 13 students who had this view, 8 indicated low academic self-esteem and expressed confusion and uncertainty about their future plans. Participants who viewed their neurodiversity as a difference which included strengths were more likely to have higher academic self-esteem, to have experienced unpleasant epithets from teachers and to have a clear ambitious view of their future.


Jon Mitchell reacted to this report, and I already discussed that. It's not surprising that AoA'ers would also react. To do that, they brought out their token Aspie, one Jake Crosby, who writes for AoA from time to time. I hadn't heard of Jake Crosby previously, but I guess we can add him to the short list of autistics who actively oppose neurodiversity, and who always happen to be high functioning.

Jake Crosby's article, titled "The Age of Neurodiversity," is filled with errors. I'm saying it's filled with errors because I'm giving Mr. Crosby the benefit of the doubt. I could just as easily have said it's filled with lies and misrepresentations. Any other major blog (or "internet newspaper") would be embarrassed to publish an article with these many inaccuracies. Let's go over some of them.

[Paul Offit] strangely cites two neurodiversity moms, Kathleen Seidel and Camille Clark for medical evidence, neither of whom have any medical background.


I've read False Prophets and my instinct was that Mr. Crosby was mistaken. I read it again just now, and at no point are Kathleen or Camille cited as experts who provide medical evidence. They are in the book simply to show that not all parents of autistic children are anti-vaxers.

He would simultaneously oppose any alternative therapy or pathological theory for autism, however effective or true, even if it is on the basis of what a few ND moms say.


I haven't seen any evidence that Dr. Offit would oppose any "pathological" theory of autism. Reading False Prophets gave me the opposite impression. As most doctors, he most likely sees autism from a purely medical perspective.

As to opposing "alternative" therapies that are "effective and true," that's an oxymoron. If a therapy is shown to be "effective and true," it's no longer an "alternative" therapy. It's simply a therapy. There's no evidence that Paul Offit would oppose therapies that are "effective and true." In fact, he seems to favor ABA because he's been led to believe it's effective, even though he is, in my view, mistaken in that regard (as high quality evidence on the effectiveness of ABA is lacking.)

In his final chapter, "A Place for Autism," Offit continuously touts the views of the five autism parents he dedicates his book to, the majority of whom believe in neurodiversity while the remaining have pharmaceutical industry ties.


Other than Kathleen and Camille, Dr. Offit's book features Peter Hotez, Professor of Microbiology and Tropical Medicine at George Washington University School of Medicine; and Dr. Roy Richard Grinker, Professor of Anthropology at George Washington University. I don't know about Dr. Hotez, and doctors are obviously bound to have connections to the pharmaceutical industry (just as, say, the Geiers do) but I seriously doubt Dr. Grinker has such ties.

This is strange, as apparent confidence or career ambition does not dictate real success or happiness.


This is a perplexing statement. It does not make sense, first of all. If you have zero confidence and zero ambition, it's improbable you will achieve much, regardless of how smart you are.

More importantly, there's a significant body of science on the effects of self-confidence on success, failure and performance. Mr. Crosby might want to read up on that before making statements that are nonsensical.

After a closer look of the study, “Student experiences of neurodiversity in higher education: insights from the BRAINHE project,” I quickly noticed that not all the people in the study were autistic. For one, it was published not in a journal about autism, but dyslexia. In fact "Dyslexia" is the name of the journal. It was not even focused on autism.


This discovery is kind of funny. It shows that Mr. Crosby has no idea what neurodiversity is. As the word suggests, neurodiversity is about, you know, neurological diversity. It's not a concept that is married to autism. The fact that neurodiversity as a term was coined by autistics and is most often discussed in the context of autism is of interest, but ultimately immaterial. It's good to see that researchers are applying the term broadly, as they should.

This is how the researchers define neurodiversity:

Neurodiversity is an umbrella term for many types of learning difference.


The study is about neurodiversity, not about autism. I'm not sure what's so hard to get about this.

Furthermore, this study does not contribute to how prevalent the idea of "Neurodiversity" is within the autistic community because this study examines six autistic people.


So? However prevalent the idea of neurodiversity is among autistics now, what the results of the study tell us is that it's in everyone's best interest for it to be more prevalent among anyone with a learning difference. From the study, it appears that the split on views is about 50/50 among those with learning differences.

Presenting it as if it reported that autistic students and graduates adhere to neurodiversity is a misrepresentation within the article that cited it.


The article that cited it was actually quite critical of neurodiversity. At no point did it make it sound like most autistic students adhere to neurodiversity. That's simply a fabrication. The following is what the article said.

According to recent research, people with autism who accept the neurodiversity platform have more self-esteem, and have more academic and career ambition that those who see autism as a medical condition with its array of disadvantages. In one study, students with autism who held the latter view more often applied for special assistance and monetary allowance through disabled students programs. Not surprisingly, most neurodiversity advocates with autism are high functioning, with little to no significant intellectual impairment.


I don't know if Mr. Crosby was pressured to produce his critique, and had a hard time coming up with proper arguments to refute the research in question. Either way, his critique is a complete disaster, and frankly, he should be embarrassed.

68 comments:

  1. He also repeats the mantra that 'most pro-nd advocates with autism are higher functioning'.

    He doesn't appear to consider that this may be an artifact of advocacy, that is, one only gets taken seriously as an advocate if one can present well and have the skills to explain succinctly and effectively.

    In other words, the nature of advocacy results in the elimination of those that can't advocate very well, unless they're supported by an outside agency.

    It's an absolute no-brainer to explain why nd advocacy has the people it does and something you touched on two articles ago.

    Pointing out the higher functioning in the ND movement fails as any form of arguement, as the nature of the system means that they wouldn't be visible enough for you to point at unless they were higher functioning.

    I've met people who have made distinctly ND comments (for autism and dyslexia, OCD etc) yet may require 1-1 for shopping, cooking, work and have difficulty with social boundaries.

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  2. The Brainblogger.com article that precipitated all of these discussions also made a point that neurodiversity proponents are high functioning with little to no intellectual impairment.

    People generally seem to think that's an important point. But they haven't thought it through. That finding is neither surprising nor relevant.

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  3. "also made a point that neurodiversity proponents are high functioning with little to no intellectual impairment"

    Which is still a silly arguement, as said people must still be noticably impaired, in the triad of impairments, to get the diagnosis. Intellectual impairments are highly comorbid with, but not intrinsic to autism.

    When we look at schizophrenia advocacy, the majority of the prominent advocates either don't have schizophrenia at all or are stage 1/2.

    The same goes for dementia adovcacy, it's overwhelmingly made by the relatives or those who have been recently diagnosed.

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  4. I believe Mr. Crosby also stated that he doesn't need any accomodations and doesn't request any from the university. If Mr. Crosby doesn't need any accommodations, he isn't autistic and doesn't have AS. I'm sorry, but this is where I part ways with those with AS who state this. If you don't need accommodations, you don't have a disability as AS is defined. Sorry, but he's been misdiagnosed.

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  5. K. "I believe Mr. Crosby also stated that he doesn't need any accomodations and doesn't request any from the university. If Mr. Crosby doesn't need any accommodations, he isn't autistic and doesn't have AS. I'm sorry, but this is where I part ways with those with AS who state this. If you don't need accommodations, you don't have a disability as AS is defined. Sorry, but he's been misdiagnosed."

    Okay. SO FUCKING WRONG that if you were in MY class for psychodiagnostics, you'd fail.

    And part of what I an qualified to teach is... guess what! Psycho-fucking-diagnostics.

    I don't care if you're an autistic person or not: I expect someone claiming ANY knowledge of how to diagnose to know one thing, which I'm coming to next!

    University is ONE situation and one situation only. A person may have no need for accommodation at university, but they maty have a million accommodation requests pending for other areas of their lives. Let me make this perfectly fucking clear, K: you are wrong. Deal with it. Because if you were diagnosing, you'd miss a definite disability issue.

    I fucking HATE when people not qualified to make afucking diagnosis IN PERSON start trying to UN-diagnose when their only idea of the person they're un-diagnosing is through the fucking internet. You can get an idea of what is going on with somone via the net, by what they leave behind themselves ON the net; but you CAN'T un-do a person's diagnosis that way. And I don't fucking care WHO you think you are, K... YOU WERE FUCKING WRONG!

    So, either fuck off out of the fuckign discussion, or admit you were wrong, and change that.

    Fucking imbecile.

    And yes, I AM qualified to make psychological diagnoses. Got a problem? Go fuck yourself.

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  6. Try to watch your language, David.

    I guess what K is referring to is criteria C of the DSM-IV: "The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning."

    It says nothing of requiring accomodations.

    In fact, it would be sufficient for an autistic to have clinically significant impairment in social functioning (e.g. no friends) to be clinically diagnosable. At the same time they could be brilliant academically and/or professionally (e.g. Vernon Smith).

    Even so I think there can be autistics who don't meet criteria C and are completely autistic nevertheless.

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  7. David,
    You're not qualified to diagnose a bat with myopia.

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  8. Yes neurodiversity has never been an exclusively autistic construct.

    Although it first appears in an academic journal in an autistic context, that is specifically in the wider field of disability studies.

    I was not on any autistic lists at that time but I believe that Judy Singer probably picked up the term there, there is no real evidence that she invented it nor that it was invented on any autistic list.

    I first encountered the term in the context of dyslexia myself and had seen it elsewhere in yet an another context in a scientific paper

    It has gained a considerable toe hold in the UK and can be found in parliamentary reports and all sorts.

    I had originally attempted to register neurodiversity.com at the same time as I registered neurodiversity.co.uk only to find the site had been squatted on. It was only sometime later on that the site as currently configured emerged. There is no hidden illuminati behind neurodiversity it is not an organisation or freemasonry but a broad concept.

    How isolated the so called anti neurodiversity camp are and how insignificant when one considers how much that broad concept is accepted in worlds they never bother to find out about.

    There uninformed arguments against the disability movement in the UK, US and elsewhere are particularly not going anywhere considering how well established and how deep those roots go, why back to the independent living moving in Berkeley in one direction, and into the anti apartheid struggle in South Africa in another. Gonna take more than a little huffing and puffing to blow that tree down.

    Hey I am only a messenger, if I never wrote another word on the subject it would hardly wither on the vine without me.

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  9. I think Anonymous 4:13 could be John Best, but due to technical difficulties, I could not identify him as such.

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  10. This comment has been removed by the author.

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  11. "David,
    You're not qualified to diagnose a bat with myopia."

    Indeed.

    I'm not a veterinary ophthalmologist.

    I am, however, a psychologist trained particularly in autism diagnosis and therefore, you just made a pretty sorry idiot of yourself.

    Nice one, Anon.

    Or should I say John?

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  12. David, I'm sorry but this is where me and ND part ways if your view is considered representative. I didn't receive any accommodations during my undergrad and graduate careers, but I sure could have. I wouldn't have spent 6 years as an undergrad if I had had some accommodations.

    There is nothing wrong with having a disability. Everyone has a disability in some aspect of their lives. I think your response to me is way over the top, even by my standards which are admittedly low.

    Joseph wrote:

    "It says nothing of requiring accomodations." (e.g. DSM-IV)

    I'm not sure what your point is? The DSM -IV is only a manual of descriptions. It's not meant to address accommodations. The DSM-IV doesn't describe accommodations for Autistic Disorder either. Does that mean that accommodations aren't needed?

    When did accommodations become a "dirty" word in ND?

    In my support group of 24 folks with AS, not a single one would claim they don't need accommodations in all areas of their lives in some form.

    Joseph wrote:

    In fact, it would be sufficient for an autistic to have clinically significant impairment in social functioning (e.g. no friends) to be clinically diagnosable. "

    Are you saying a lack of friends can lead to an Asperger's Syndrome diagnosis? That doesn't seem correct to me.

    "At the same time they could be brilliant academically and/or professionally (e.g. Vernon Smith). "

    In coming out, Vernon Smith described how he has formed his own accommodations and how he has struggled in the academic setting despite his brilliance in his field, a field I also have a PhD in.

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  13. "When did accommodations become a 'dirty' word in ND?"

    It never has been, to my knowledge.

    "Are you saying a lack of friends can lead to an Asperger's Syndrome diagnosis? That doesn't seem correct to me."

    It might form part of the fulfilment of the criteria. Depends on the situation. But difficulties with forming and maintaining social relationships IS a part of the set of criteria to be fulfilled in diagnosis of autism; so... if it 'doesn't seem right to you', you might wish to reconsider your ability to make a diagnosis.

    I smell a lurker here.

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  14. David wrote:

    "But difficulties with forming and maintaining social relationships IS a part of the set of criteria to be fulfilled in diagnosis of autism; so.."

    I agree it is a or one part, but that wasn't how I read what Joseph wrote. He can correct me if I read it wrong but I took his use of the word sufficient to mean that it could be the sole criteria used if the clinician chose, based on the DSM-IV.

    No David, I'm not a lurker.

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  15. I agree it is a or one part, but that wasn't how I read what Joseph wrote.

    What I said, and I thought it was obvious, was that someone who meets all required criteria other than criteria C, and also has significant social impairments, with no significant educational or professional impairments, should be clinically diagnosable.

    You'd be undiagnosing many well known autistics otherwise.

    We're of course only discussing the technical requirements, and we're assuming the DSM-IV is what tells you whether someone is autistic or not. But that's obviously a socially-constructed definition. If we believe autism exists as a natural entity independent of cultural ideas, then who's to say the DSM-IV is what tells you whether someone is autistic or not. Criteria C seems arbitrary in that sense.

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  16. When did accommodations become a "dirty" word in ND?

    And who said they were? We're just taking issue with the requirements you believe exist for someone to be considered autistic. You're undiagnosing many autistics in one swoop.

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  17. "We're just taking issue with the requirements you believe exist for someone to be considered autistic."

    I agree. K's ideas are not based on the available science; they're his own prejudices.

    "You're undiagnosing many autistics in one swoop."

    I know who K is.

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  18. "You'd be undiagnosing many well known autistics otherwise."

    I certainly didn't mean to undiagnose a wide range of people. I'm not qualified to do that.

    What well known autistics are you referring to?

    I do think there is value to an official diagnosis, like I think there is value to a college degree. I would also agree that there is a massive number of people walking around that have AS and don't have a diagnosis or are misdiagnosed. I don't see where there is argument from me on this point.

    However, I contend that if one does not need accommodations or hasn't made accommodations through years of learning to do that on one's own, then one should not say they have AS. I think its harmful to perpetuate that people with AS don't need accommodations.

    I'd like for you guys to come to my support group and tell these folks what your saying here because I believe your diminishing the struggle of AS people by claiming they are somehow failures because they need accommodations in all parts of their lives, because isn't that really what your saying? In other words, they can function with no accommodations in a social environment like a university?

    Isn't the disability rights movement about the social construct of disability? Perhaps I don't understand what your getting at but whether a struggle comes from the medical or social model, it is a struggle none the less and requires accommodation. If you are perfectly fine in a social environment, if you have perfect executive functioning and can easily manage your academic and living arrangements at 18,19,20 years old then yes, I do question if you have AS, I'm sorry.

    I don't mean to write this in any aggressive manner or challenge aggressively anyone here, I'm just stating a personal opinion based on my own experience which is really all any of us have to go on. I could certainly be wrong. I'd just like to discuss this in an open and friendly way.

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  19. @Kent: You're reading things into what David and I said that just aren't there, such as:

    "I think its harmful to perpetuate that people with AS don't need accommodations."

    No one said that.

    "I believe your diminishing the struggle of AS people by claiming they are somehow failures because they need accommodations in all parts of their lives, because isn't that really what your saying?"

    Nope, no one said that.

    I'll answer other points in a separate comment.

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  20. What well known autistics are you referring to?

    I would have to make assumptions about each person specifically, because I obviously wasn't there to see if they got accomodations or not, but there are autistics who clearly have done well academically and professionally, and are nevertheless recognized as autistic, e.g. Temple Grandin, Vernon Smith, etc.

    David Andrews here might be such a case as well.

    You can say it was a self-serving objection because I got through college and graduate school, with very good academic standing, and at the time I probably didn't even know what the word "accomodation" meant. I knew jack squat about disability rights concepts. I first learned about possibly being autistic around the time I graduated, maybe a bit later.

    At work, autism is somewhat of a distraction. I get obsessed with things outside of work (obviously). But I manage to do what is expected of me. And since I work from home 100% of the time, I don't have the socialization issues I would otherwise have in an office, except when there's a conference call.

    What you're saying is that even though I have essentially zero socialization, even though I've never been able to, say, hold a group conversation properly; even though I have all-consuming interests; even though I have an obviously autistic son, and a dad who was thought to be mute to the age of 4; in spite of all these things, I might not be autistic because I have a job and did well in school.

    I disagree. And I could also make a pragmatic argument about the implications of what it means to define as non-autistic any autistic person who is successful in a couple areas, and why that doesn't make sense in any minority group.

    I should note that it doesn't really matter whether you or anyone else believes I'm autistic or not. I don't need to be autistic to blog about autism. I could just as easily not disclose I'm autistic, and simply blog as a parent. Nothing would really change. It's more of an identity thing for me than anything else.

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  21. "I should note that it doesn't really matter whether you or anyone else believes I'm autistic or not."

    I never questioned your diagnosis, I questioned Jake's because he stated he didn't need accommodations so perhaps you were extrapolating.

    "I don't need to be autistic to blog about autism." Huh?, who was questioning that? You only need to have access to a computer and an interest to blog about autism. Though if you belong to a support group, you might gain a new perspective about other's experiences.

    "I would have to make assumptions about each person specifically, because I obviously wasn't there to see if they got accomodations or not, but there are autistics who clearly have done well academically and professionally, and are nevertheless recognized as autistic, e.g. Temple Grandin, Vernon Smith, etc. "

    Being unable to address accommodations of these two "shiny aspies", sorry, I couldn't help myself, then your statement that I was undiagnosing them has little merit. In fact, Grandin and Smith have both talked extensively about accommodations, more specifically that they are paramount to being "successful" for those with AS and how accommodations are needed in EVERY aspect of their lives. For instance, Grandin writes that without SSRI's, she couldn't function. That is an accommodation for her. The opportunity to concentrate on an area of interest is an important accommodation both of those folks you cited as important. Smith talked about having an understanding wife, who tries to accommodate his differences as being important to his professional development. I've met Vernon Smith. He is brilliant in his field, but he would be unable to apply his talent in a corporate environment as he admitted to me when I talked to him about my own struggles in a corporate setting.

    "But I manage to do what is expected of me. "

    I never do (i.e. manage what is expected of me). In this area I'm a constant failure because my "talent" doesn't translate into what is expected of me. This could be due to the fact that I work in a corporate environment and I don't have the work from home accommodation. I'm woefully under-employed, though I manage to make a very good living by most people's standards. If it weren't for my special talent, I'd probably would not be employable. However, I'm the exception in my support group.

    "What you're saying is that even though I have essentially zero socialization, even though I've never been able to, say, hold a group conversation properly; even though I have all-consuming interests; even though I have an obviously autistic son, and a dad who was thought to be mute to the age of 4; in spite of all these things, I might not be autistic because I have a job and did well in school. "

    I'm not sure where you got that from. I'm talking about accommodations and the need for them for people on the spectrum. If your able to do all those things without accommodation, then you don't have AS is what I'm saying. If your able to function socially in a typical environment, I question the diagnosis. What Jake wrote is that he is able to function in a typical social environment without any accommodation. If that is true, then no, he does not have AS and yes, I am undiagnosing him, despite my lack of qualifications to do so. Social "impairment" is a core symptom of autism spectrum disorders. Some folks find a way around their "impairments" like you and I did. But I would never claim I didn't have the struggle because I did and it was a huge accomplishment that I even completed undergraduate work which I found much more difficult than graduate work. Graduate work was a breeze compared to undergraduate because in one I could follow my interests/obsessions, in the other I could not. I needed accommodations as an undergrad. I didn't receive it. As a result, it took me much longer to complete my work. Don't even ask me about my personal life during that time. I could barely function.

    I think we can agree that autistic people need accommodations in some aspect of their lives. Perhaps where we part is in the "level" of that accommodation. Both Grandin and Smith are great examples of when accommodation has been successful, but in the vast majority of autistic people, like those in my support group, accommodations have fallen short. Most of them are not brilliant shiny aspies. They are the run of the mill asperger's folks. Struggling just to survive in a world unfriendly and unaccommodating to disability. If you have no disability, like some claim on the Hub, you don't have an ASD. I'm there with the folks that want to fight for autistic rights to equality in all aspects in a person's lifespan. But if they deny core components of autism (i.e. social impairment), and claim they don't need accommodations in this area, then I question whether they are truly autistic, despite my lack of qualifications in this field.

    I hope this didn't sound too aggressive. If it did, I'm sorry, I didn't mean it that way.

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  22. Kent said:
    "I'd like for you guys to come to my support group -"

    I wish I could, I wish there were one in my area. The "human connection" is the one thing I'm missing, now that I'm retired. (And I haven't been going out for anything except groceries, because I really avoid the cold.) If there were such a group, I'm sure I could teach some skills, be useful in some way.

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  23. If your able to do all those things without accommodation, then you don't have AS is what I'm saying.

    Well, I have, and I am. You could say that a circumstance such as being allowed to work from home is an accomodation, but it's not, because it wasn't intentional. It's not something that I asked for. It was just a random thing that happened.

    I've worked in an office with other people. It makes me feel uncomfortable, and my current situation is definitely way better. But I've managed, and was able to get work done. I guess it helps that my job doesn't require a whole lot of interaction with people.

    If your able to function socially in a typical environment, I question the diagnosis.

    This I cannot do. Yet, I'm perfectly OK with it.

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  24. "The "human connection" is the one thing I'm missing, now that I'm retired. (And I haven't been going out for anything except groceries,"

    Clay, I went through a period like that for 8 years in my 20's.

    My 20's were the most depressing time in my life. It was pre-diagnosis, when I felt like everything was my fault. If I had known then what I know now, I wouldn't have been so hard on myself. If I had a source of self empowerment that I feel now, I wouldn't have been so depressed.

    I embrace the fundamental aspect of ND, that of self empowerment. Its been helpful to me. But, I reject the shiny aspie "commorbidity" that seems to pop up every once in awhile as well as the denial/ignoring of some very core issues. These core issues are not in need of elimination necessarily, with the exception of anxiety, but they are needed to be acknowledged and accommodations must be a determinant value and goal we should demand from society.

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  25. Joseph quoted:

    "If your able to do all those things without accommodation, then you don't have AS is what I'm saying."

    Joseph responded:

    "This I cannot do. Yet, I'm perfectly OK with it."

    I'm perfectly ok with it too. I just don't deny it, like Jake has.

    Joseph quoted:

    "If your able to do all those things without accommodation, then you don't have AS is what I'm saying."

    Joseph responded with:

    "Well, I have, and I am."

    I can tell you Joe that you would not have been diagnosed with AS by UNC-Chapel Hill's TEEACH center (where I was diagnosed) then because that was a core determinant in my diagnosis (specifically how I function in an employment setting). I'm not saying either way whether how they determine these things is correct, I'm just sayin'. Based on some things the TEEACH center has done to autistics, I'm not endorsing them.

    I don't know you Joe, but if you have no social "impairments" at work, even when you work from home (even from home you have to communicate by email), then what exactly makes you autistic by your reasoning? Obsessive interests alone? I have to constantly guard what I write as not being to aggressive. I'm consistently misjudged because of my written communication. I'm either completely misunderstood, ignored or I've infuriated someone unintentionally. I can't hide my AS in emails. Its pervasive apparently.

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  26. You're wearing me out. OK, assume I'm non-autistic. I don't care.

    I want to see what David Andrews says if he shows up again.

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  27. Sorry, I didn't mean to wear you out. See this is what I'm talking about. I have this effect on folks.

    I just don't think you can have AS without social "impairments". Call me naive.

    I'm sure David will let me have it haha:-) I probably deserve it to some extent. Self loathing initiated.

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  28. I didn't say I have no social impairments. I said academically and professionally I can manage without accomodations, even though some things like being able to work from home certainly help.

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  29. Here is a real email I just received from a co-worker with the name, position and phone numbers removed:

    From: Richard
    To: Adams, Kent
    Sent: Thu Mar 05 12:57:08 2009
    Subject: RE: XXXX Investments

    Sorry that you feel that I was unresponsive to your question. If I am correct, you asked if I was familiar with the software, and whether it could create reports. I looked into it, saw that it can create all kinds of reports, and answered that question along with some additional information. If you have an additional question, send me an email so there is no verbal mis-understanding of what you need.


    Richard
    Vice President
    Manager-%$%##%$#$
    Business & Treasury Services
    XXX
    CCCC
    ####
    We Can Do It-Just Ask


    From: Adams, Kent
    Sent: Thursday, March 05, 2009 12:32 PM
    To: Richard
    Subject: Re: XXX%$#@ Investments

    Not the question I asked but thanks anyway.

    From: Richard
    To: Adams, Kent
    Sent: Thu Mar 05 11:45:44 2009
    Subject: XXX$%$ Investments

    Hi, Kent. I took a look at the Rent Manager website. If they do have the online (web-based) version, it is a complete accounting system as well, and can supply P/L's, GL's, and just about any other financial report. If they have the Resident Web Access module, their customers can go online and make payments, check their account status, schedule work orders, etc. If so, we would only be useful to them as a bank since they would already have all of the payment options through their software (did not see anything about remote deposit capability, though).

    I noticed they operate some hotels and restaurants, sell home construction industry products such as cabinetry and NBNBN windows, and manage apartments and commercial space. Quite a mix of business types.

    Richard XCXCXCXC
    Vice President
    Manager-P13131321321321321
    455%$%$%$
    #$#^%$&^%&^%
    %^^$^%$
    We Can Do It-Just Ask

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  30. Communication impairments are certainly central to autism. But every autistic person will have different impairments in that regard. For example, an autistic person might have perfect written language, and have problems with spoken language.

    Would you tell Larry, for example, that he has a written language impairment? Go ahead and try it :)

    FWIW, my job is not that dissimilar. I write software. I do misunderstand, overlook or get confused about requirements sometimes, which can be embarrassing. It happens. Those things can get ironed out and resolved.

    No offense, Kent, but I do notice a communication problem that you have. I don't know what it's called, but you seem to read things between the lines that are not there.

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  31. "You're wearing me out. OK, assume I'm non-autistic. I don't care.

    I want to see what David Andrews says if he shows up again."

    He's best ignored, Joseph. He's out picking fights.

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  32. "I said academically and professionally I can manage without accomodations"

    The former I couldn't, though I did manage a lot of self created accommodations and the latter I need some help with as I manage to piss off everyone. I can only see my mistakes after I review what it was that I said or wrote.

    Academically: It took me 5 years to figure out that I didn't need to write everything the professor said in lectures verbatim and about 4 years to figure out that arguing with the professor didn't show how smart I was but how disagreeable I was. I spent 4 years making enemies in the business administration department. I was so well known for being a basic "asshole" that I was encouraged by certain professors not to take their course offerings if I could not listen with an "open mind" that was flexible and ready to learn. I completely withdrew from the university for 2 years and moved back home. I couldn't function, filed a chapter 7 ($3,000 was the total debt!) at 22 years old and moved back in with my mother. I couldn't manage to pay my rent, keep my apartment clean or wake up in time for classes (due to incredible insomnia keeping me awake for days at a time). I was extremely depressed and over anxious all the time. All this and I'm considered super high function in my support group today. If I'm super high functioning, lol, then what the heck are these average Joe autistics in my support group? Most are unemployed, living at home, addicted to drugs or alcoholics due to a life time spent being bullied and marginalized.

    We do no autistic favors by pointing out shiny aspies as if they are the norm. Jake, is a shiny aspie and AoA is making the same stupid mistake as the HUB makes. Both sides seem to be over concerned with vaccine wars, prevalence wars, causation wars, etc. Meanwhile, autistics are rotting from a lack of educational opportunities, marginalization, poverty, and lack of accommodations based on functioning levels. After all, if some "autistics" can function without social impairments, then we why can't others?

    Social impairment is not a core symptom of autism? Of course it is and that should be ok. It should be ok if I stumble a bit or others stumble a bit. Educate the public about it. Fight for accommodation, but don't deny it. If you don't have some form of social "impairment" you don't have AS. If you can function fine with no help in a social environment, you don't have AS! You can overcome social "impairment" only through accommodations by others and acceptance of that difference. Embrace the socially constructed disability and claim it as a right. Don't run from it. Say yes, I am disabled based on societal norms, I need accommodations. That does not make me less of a person or incapable of excelling once I have those accommodations. That's what I'm saying.

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  33. "No offense, Kent, but I do notice a communication problem that you have. I don't know what it's called, but you seem to read things between the lines that are not there."

    No offense taken. I agree. I'm trying to learn everyday how others are interpreting me. Any advise you can give will be greatly appreciated. I have AS, I have a disability, and I'm not ashamed of it and I'm constantly trying to understand what it means for me.

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  34. @David: I don't think Kent is a troll. I think he's being sincere, but wrong in my view.

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  35. Kent said:
    "I don't know you Joe, but if you have no social "impairments" at work, even when you work from home (even from home you have to communicate by email), then what exactly makes you autistic by your reasoning?"

    Ooh! Lemme take this one!

    I never had any accomodations, in high school, in the Navy, in various work places, in college, many more work places, often competing with younger men on house painting crews (backstabbing factor is very high there, as the work is seasonal).

    I worked as a Home Health Aide for 6 yrs pre-diagnosis, and nearly 10 yrs post-diagnosis, and did seek one accomodation based on it. There was a "holiday commitment", which meant that on holidays we had to work, we could be sent to 4 or more people to get in at least 8 hours. They'd be strangers that I would likely never see again, and all had different needs, requirements, routines, etc. I'm just not that flexible! I made a written agreement that I would work every holiday, Instead of every other, provided it was with any regular client I already knew.

    So how do I know I was always autistic, even if I had never had any accomodations? I got my Dx nearly 10 years ago, it made such perfect sense! I recalled that even at 1 or 2 yrs old, I was very much involved in a dialogue with myself, (or just talking to myself in my head), trying to figure things out. Arranging information, making mental notes, apparently daydreaming, not being aware of my surroundings unless somehow forced to.

    As for "social impairments", friends have been few, far between, and very shallow.

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  36. Clay, my sister is an LPN and does a lot of work that a Home Health Aide does. That's not an easy job. Was that a career you set out to do?

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  37. Kent said:

    "That's not an easy job. Was that a career you set out to do?"

    Not really. It's what there was to do after I'd become too old to compete with guys in their 20s as a house painter. I also worked in factories, doing finish-work on motor homes and pianos. I usually got promoted to "Leadman", as I was "smart". (See what a 150 IQ and a savant skill in English can do?) ;-)

    No, I just didn't have the opportunity to go to college after school, my father would NOT have paid for any of it, and frankly, I would have been too immature to do any good anyway. So I joined the Navy while still 17, and grew up there. Was married and had two kids before I got out 4 yrs later. Had to do whatever I could find. Much later, I went to a community college and got an AA after 2 1/2 years, but that wasn't of any help. Meh. It turned out alright.

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  38. "See what a 150 IQ and a savant skill in English can do?

    Mine was tested in 2005 at 84. That's pretty much what I probably tested out as a kid because my initial diagnosis as a child was mild mental retardation. I grew up, in my early years, as the "retarded" kid.

    I don't give much weight to IQ scores. For example, you have an IQ of 150, no advanced education and little problems with social work related issues, if I read what you wrote correctly. I, on the other hand, have a low IQ, barely low normal, have advanced degrees and extreme issues in work/social issues. I wouldn't describe anyone in my support group as someone that might have a high IQ, but I don't know that for sure because its not a topic of discussion. However, I make the assumption that they were never confused with having a high IQ based on their early development and life stories.

    With an IQ of 150, would you say you were under employed? If you had been given additional opportunities as a young man, do you think you would have still made the same choices or taken a different route? This isn't a rhetorical question because some folks are happy doing things that don't match their "potential" and there is nothing wrong with that. It seems, from your description, that your value to your employer was the manual labor you were judged by. As long as you showed up for work, did the physical things involved, you were rewarded with a paycheck. If you had to navigate in the world of corporate politics, with only your mind as the "collateral" and "cash flow", do you think you would have needed accommodations?

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  39. I don't give any weight to IQ scores. That parenthetical remark was sarcastic, maybe ironic. I happen to be extremely good at taking tests, never did any homework in school, except for German and Shorthand. When teachers asked me to hand in a paper, I'd just say, "I didn't do it." My tests brought my grade up. I didn't do much of the Math in the Mensa IQ test, because I'm really no good at Math, barely passing freshman Algebra (which I took as a Senior, 'cause I needed the Math credit), with a D-. I must have done very well with the rest of the test to get 150, yes?

    I also have no aptitude for anything involving technology. I bought myself a new DVD player before Christmas. (The old one may not actually be broken.) Finally stopped procrastinating, and tried to hook it up yesterday. No go. Same problem as with the old one. Also, my mind can't retain technical jargon, although it holds everything else vocabulary-wise.

    "With an IQ of 150, would you say you were under employed? If you had been given additional opportunities as a young man, do you think you would have still made the same choices or taken a different route?"

    Definitely under-employed, but I was also laboring under the handicap of having come from a very dysfunctional family. Parents divorced when I was 3, both factory workers, hard drinkers, lots of sturm und drang I won't go into here. My father was an alpha-type male, a former Golden Gloves boxer, was elected President of his local skilled trades union. He had no respect for "college boys" at his factory, and there was no way he would have sent me. Especially as he was always disgusted with me. He was really afraid I was going to turn out to be gay, strange as I acted.

    So, if I had been born into another family, then I might have lived up to my potential, might have become an English or History Professor. That feels about right.

    "As long as you showed up for work, did the physical things involved, you were rewarded with a paycheck."

    The factory jobs I did, finishing motorhomes and pianos, involved more than showing up for work. It was fine detail work, needing talent and skill. As a painter also, I had an eye towards perfection. I was damn Good at those things. Also enjoyed them.
    Oh, I left out that I owned a gas station in Pontiac for a year. Got held up way too often.

    "If you had to navigate in the world of corporate politics, with only your mind as the "collateral" and "cash flow", do you think you would have needed accommodations?"

    I can't imagine any parallel world in which I would have gravitated towards that situation of corporate politics. Can't even think about it, so I don't know what accommodations I would need.

    Gotta go. "Survivor" is on.

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  40. "I happen to be extremely good at taking tests, never did any homework in school"

    I'm the opposite. I do very poorly on tests. Too much information flowing through my head and unable to grasp the larger points and anxiety ridden at the same time.

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  41. Y'know, that's why they call it a "spectrum". ;-)

    (I'm on a commercial break.)

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  42. Kent, I'm curious as to how you define "accommodations" in a college setting, particularly social accommodations. Because from my experiences, colleges don't really know how to accommodate autistic students beyond typical academic accommodations and whatnot. I'm about to graduate from a college which is at least as prestigious as Brandeis, most likely with honors, and I need very little in terms of academic accommodations. Though I typically am the last person in the class to finish a midterm/final (in writing-heavy subjects like English and History), professors are usually so taken with my writing abilities that I get As anyway. Professors tend to like me, in large part because my essays impress them and I put far more effort and detail into research projects than other students. I generally score highly on SAT-type standardized tests, though I don't think that measures much more than the ability to take tests.

    So I don't really need accommodations in academics, but I have come across housing problems. Several times, my hallmates have contacted the Dean of Students because they're freaked out by my panic attacks and otherwise find me puzzling. I'm probably more disabled by the aspie trait of difficulties dealing with change and surprises than social traits. My school hasn't been quite sure how to handle me, aside from having me change rooms once and asking me to tell hallmates about AS. (Which is really hard for me to do! Finally, last year they allowed me to send an e-mail instead.)

    I don't function "normally" socially, but my relative social isolation isn't something that can be easily accommodated. I know some schools have programs in place to "help" spectrum students socially, but a lot of that came across as really condescending to me. (i.e. forming "social groups" in which AS students are forced to be mentees of NT students who are probably just looking to add to their resume.) I think there can be ways of accommodating AS students so that we're able to have the kinds of social lives which we want, but in practice there's very little of that sort of thing. When former "friends" don't respond to my calls on numerous occasions, I don't quite know how I or anyone else can accommodate that. I'm fortunate to have a partner and one friend who also has a disability.

    I also have problems in doing basic things like remembering to do the laundry or clean dishes, but with the help of my autistic SO I get by and seem relatively normal most of the time. (when I'm not having a meltdown)

    I also have a job tutoring writing at the college. Some students find my unfriendly or/confusing, but most of my tutor evaluations are positive, though I had more negative evaluations when I first began the job. I'm not sure how I'd do in a full-time work environment and am delaying that with more education.

    So I'm a very successful soon-to-be college graduate who hasn't gotten many outside accommodations. I'm diagnosed with AS and still consider myself disabled in certain areas, though socially I have fewer problems than most aspies. I think you (Kent) might classify me as a "shiny aspie," but I consider myself disabled in several areas. It is very much a relative judgment, and a product of outside circumstances. If my parents weren't able to pay for a private liberal arts college, things probably wouldn't have worked out this well for me.

    So, just because someone doesn't receive much in the way of formal accommodations doesn't mean they don't have disabilities. Sometimes accommodations don't quite exist for our disabilities, or we have medical "accommodations" like meds and neurofeedback. "Disability" is relative and fluid.

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  43. Kent,
    Just want you to know that I'm no supremacist. As I told you on another forum, I realized early on, after attending my first Autreat, that being autistic was a situation of us all being "in the same boat". Sink or sail, we're all together in this.

    You should get a chuckle out of this...I had my taxes done today, and my total adjusted income for the year was $23,978. And that was my best year ever! (I've always done my taxes myself, just 1040EZ, but I'd had a lump-sum payment of retirement benefits from a former employer, and wasn't sure how to deal with it. Needed a 1040.)

    You wrote:
    "Educate the public about it."

    I did that today, with the young man who did my taxes. Just before he finished, I told him he'd been speaking with an Aspie, what some of us with Asperger's Syndrome, a common form of autism, call it. I explained it in some detail, briefly, and told him it was because he might have children someday who might have it, and I wouldn't want him to panic. Also mentioned the rabid anti-vaxers who are trying to blame autism on vaccines.

    He said he wouldn't have known it if I hadn't told him. So I can pass, at least for 20 minutes! :-)

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  44. Great article, Joseph, I read that AoA thing yesterday and it enraged me so much. So, thanks for the rebuttal.


    Kent Adams:
    "I'd like for you guys to come to my support group and tell these folks what your saying here because I believe your diminishing the struggle of AS people by claiming they are somehow failures because they need accommodations in all parts of their lives, because isn't that really what your saying?"

    What? Noone suggested these people are failures!

    I'm one of those high-functioning adults, who needs a lot of accomodations, and it's just not true, that Autistics who don't need them diminish my struggles in any way.

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  45. Sarah asks:

    "Kent, I'm curious as to how you define "accommodations" in a college setting, "

    Sarah, below is a good start I think:
    http://www.teacch.com/college.html

    Perhaps knowing more about your self when entering college helped you be more successful. For me, I was in college before Asperger's was an official diagnosis and didn't understand those things that might help me be more successful. I have a lot of sensory processing issues. For instance, it was impossible for me to have a room mate. Not because a roommate would have been freaked out by me but because I wouldn't be able to handle social conversation in a small room with someone. I would have felt trapped and that would have increased my anxiety.

    I really could have used the help of a disability counselor to keep me on track. I could have avoided persuing my personal interests in those first couple of years. For example, I managed to find courses that were in the graduate program that interested me but didn't help me towards a degree. I spent the first 2 years wasting time in these classes. By my junior year, I figured out that I was behind because I hadn't taken the required courses for my degree. I had no counselor there helping me to understand the degree path. I had an extraordinarily hard time studying because I needed a "perfect" environment to concentrate.

    I couldn't schedule my out of classroom times very well. I typically signed up for a course much too late in the process which put me further behind. I had to withdraw from dozens of classes because I couldn't make it to class on time. I had lots of executive functioning issues. When I did make it to class, I spent the entire time writing copious notes. I didn't know shorthand or understand what was important and not important to write down so I ended up writing everything down. I had a novel by the time I left a class. This left me with two text books to "memorize".

    I do think if I had known my learning style before entering the university I would have been much better prepared. However, I floundered for years trying to figure out the whole thing.

    All of these things I still struggle with today at work. You guys don't sound like you have the same disability I do because I can't relate to your experiences. I'm not saying you don't, I'm just stating what I've read. Tutoring others would have been a joke for me in school. Professors that liked me? Oh my, I would have loved that. Perhaps part of my difficulty was not having any early intervention and help. I'm sure that I could have benefitted from knowing my learning style and that a strength can also be a weakness if it isn't harnessed appropriately. I did exceptionally well in advanced classes but poorly in introductory classes. My skill set was so uneven that I could have used help from someone to identify these things which I couldn't identify in myself.

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  46. You guys don't sound like you have the same disability I do because I can't relate to your experiences.

    No one has the same exact disability as anyone else; at least with neurological disabilities that's the case. (Hence, neurodiversity.)

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  47. Kent, I do understand that many others have more difficulties than I do. I've often wondered whether it's fair for me to call myself someone on the spectrum because of that, or even if I was misdiagnosed. (Though the people who know me well, and several professionals, think I have it.) I don't want to diminish others' difficulties or go into some "shiny aspie" superiority bullshit. But at the same time, my experiences are my experiences, and I'm not comfortable with implications that I somehow don't have the right to claim autism/disability when I do have significant autism-related problems.

    I looked at the TEACCH website about college accommodations, and while it had a lot of important suggestions, on certain areas, notably social skills and daily living, I note a certain lack of specifics. Instructions are great, but the ability to schedule and follow through with necessary daily activities can be considerably more difficult. And being introduced to a campus group with common interests may not be very helpful, when so many groups are almost entirely social in nature. (I speak from experience in trying to get involved with Young College Democrats.)

    I'm lucky in that my small college has a lot of hand-holding for everyone in terms of things like learning how to use the library, dorm and safety protocols, and writing college papers. During my first semester, my intro writing prof, for instance, scheduled individual appointments with our entire class to talk about our paper drafts and ideas. Even in upper-division courses, this is fairly common, and goes right up to senior thesis. That helped me figure out that most profs like talking to students, especially students who dazzle them with writing skills, an unusually strong interest in doing research projects, and the willingness to devote much time and be meticulous in carrying out said research projects.

    In terms of career services, I've been able to practice interviewing skills through several mock interviews which are videotaped, and that's helped me a great deal in drilling me with things like faking eye contact, remembering to smile and be positive. At my college, these services are open to all students, and I'm incredibly privileged to attend such a college, without a doubt.

    I agree with you on the roommate thing. I lived with a roommate for a year, and it was miserable and I felt trapped so much of the time. She never talked to me, except occasionally to say banal things like "could you move your laundry bag?" I never could figure out why she was like that, though she probably thinks the same of me. I probably could have gotten a single with my diagnosis, but for a variety of reasons didn't think to ask until October of my sophomore year. Single rooms work MUCH better for me. But people in nearby rooms have still been freaked out by me, and that's been a really big problem with no easy solutions.

    I am not representative of the "typical" aspie college experience, but I'm not sure anyone truly is. I know several other diagnosed aspies, including my partner, who are similar in that we excel in academic settings but still have other autism-related problems, some of which can be severely disabling. I may be a standout student, but that doesn't stop my partner from worrying that I might end up in jail or an institution because of the intensity and frequency of my meltdowns. Nor do his academic achievements stop me from worrying about how well he can cope with an actual job. Jake has a legitimate right to speak as a spectrum college student, much as I dislike him. (I've begun thinking of him as the Clarence Thomas of the autism blogging world.) I do think this shows the hypocrisy of the AoA crowd, though, in that they'd almost certainly label him a "fake autistic" were it not for the fact that he agrees with their despicable positions.

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  48. About the roommate thing, I just gotta say, it would've been much much better not to have roommates in college (I had a few) but it would never have occurred to me that's a reasonable expectation on my part. I bet even most NTs would much rather not to have roommates at all, right? I always assumed that's just something you need to put up with if you have to live in a dorm.

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  49. "it would never have occurred to me" seems to be a recurring theme common to most autistics. Being isolated, we don't have ready access to others' ideas, and one just can't construct ideas out of whole cloth.

    If single dorm rooms are a possibility, that needs to be made known to those who need them.

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  50. "Token" Aspie?

    Not very nice, at all, just because he does not share your ideology.

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  51. Why not? You're our token asshole. (Yes, I know, I'm ad homming all over the place, but don't really give a rat's ass, Harold.)

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  52. Jake Crosby - despite being a fairly good writer - doesn't appear to have done much outside of his Age of Autism posts. Said posts seem to arrive be wheeled out when there is a need of a bit of 'ND-bashing' in order to make a point - any point at all it seems - to distract from what else is going on in the autism community.

    Combined with the rapid acceleration through the ranks to 'contributing editor' despite the lack of quantity of posts and relevant experience; the sheer timing and content of his posts speaks of tokenism.

    The number of mistakes in his posts are shocking, yet - as the Lurker episode(s) have taught us - you can't just expect people to grasp neurodiversity straight away, nor can it be simplified enough to just give peope enough details to get going by themselves.

    Many of us that have arrived at a neurodiversity attitude have done so after many years of study and contact with other people with autism and autism services. We're able to see the beginnings of it in the move towards client-centered practice, public consultation forums and user-group involvement.

    We can only take pity on people like Jake, Jon, Harold an the like for thier inability to see ND unless it is expressly stated.

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  53. I don't think Age of Autism is prominent enough to consider any of their associates as tokens. I think it's ironic Jake Crosby is being called one, as some awful form of tokenism is likely what would result from ND's phony "acceptance" agenda.

    I like how he criticized the ridiculous study. I don't think the study was extensive enough either. I could realize that ND is being applied to conditions besides autism, and I don't expect it to be based on sanity either way.

    I think it should be questioned why the pro-ND group had higher thoughts of self-esteem and career and academic ambition, and the anti-ND group had less of those thoughts and applied more for assistance.

    It seems specious to me to think of ND as the cause for the higher self-esteem and ambitions. Maybe the higher self-esteem and ambitions, and ND adherence, were both made more probable by being higher-functioning in whatever condition the individuals had.

    I think that's the common cause, and that common cause also effected less of a need for assistance, which could explain the lesser level of application for it compared to the anti-ND group.

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  54. It seems specious to me to think of ND as the cause for the higher self-esteem and ambitions. Maybe the higher self-esteem and ambitions, and ND adherence, were both made more probable by being higher-functioning in whatever condition the individuals had.

    That was Jon Mitchell's speculation as well, but it's unsupported.

    True, the study did not control for confounding. That's something a replication could do. They could try to look at bigger groups, and then match them by functioning level.

    So suppose they do this. They match what you call the pro-ND and anti-ND groups for functioning level. Do you think the pro-ND students and the anti-ND students will have the same level of self-esteem and same type of self-concept then? I'd be very very surprised.

    BTW, Jake Crosby's critique did not really identify these types of methodological limitations.

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  55. If they did that matching, I think there may be some similarity in self-esteem and self-concept, but not the same. I think their ways of expressing and perceiving their self-concepts could vary according to different combinations of functioning level and self-esteem. I wonder how much of that matching could be done.

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  56. Nobody ever said that life was supposed to be a barrel of laughs, and I can't say that I have been happy for much of my life, but then that never was the point of it all, being here, doing something, pissing off all the naysayers, well that is worth something at least :)

    My mum got through her pain with a sense of humour, and my dad had an expression, "when faced with the inevitable you might as well enjoy it"

    If you think that life owes you the "American Dream", then you will be dissapointed, yes even if your name is George Bush, or Barack Obama.

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  57. "First, it turns out that Wakefield probably falsified his data."

    Based on the published lies of Brian Deer who's own allegations brought Andrew Wakefield, Simon Murch and John Walker-Smith to trail before the GMC to begin with, a conflict of interest not disclosed, who also used insufficient medical records to write his article that got published eight days after Sunday Times owner James Murdoch (son of Rupert Murdoch), joined the board of directors of GlaxoSmithKline.
    http://www.ageofautism.com/john-stone-uk/

    Here is Wakefield's response:
    http://www.rescuepost.com/files/deer-response.pdf

    "Second, they took a beating scientifically and legally at the Omnibus Autism Proceedings."

    In a kangaroo court which exonerates vaccine-makers from liability and is not even part of the US justice system.

    "Third, their attempt to counter-attack by recycling a weak vaccine case from 2007 and acting as if it were new and "hidden" did not bear fruit."

    NDs like Joseph will tell you the court did not concede vaccines cause autism because the child was not autistic when in fact in the courts the experts declared Baily Banks wasn't autistic because he has a reason for his condition (same with Hannah Poling, Julie Gerberding said she had "autistic traits" rather than autism)...as if the 5000+ other children with pending decisions in the omnibus case don't. Plus, these vaccine court cases are always hidden, otherwise we'd have known why the government has paid $1.6 billion in vaccine court compensation fees since 1988 as reported by CBS.

    "To be clear, neurodiversity is not the opposite of anti-vaccination."

    He's right you know, it opposes the thought that autistic people are "poisoned" no matter what the source, whether it be amalgams, fish, coal emissions etc., a thought I believe in.

    "To do that, they brought out their token Aspie, one Jake Crosby, who writes for AoA from time to time."

    I'm sure the children of the five parents on the AoA team would love to write for AoA, tragically they cannot.

    "guess we can add him to the short list of autistics who actively oppose neurodiversity, and who always happen to be high-functioning."

    Is he saying that all low-functioning autistic people, since they can't state otherwise, are ND? Because that's what he is implying.

    "Jake Crosby's article, titled "The Age of Neurodiversity," is filled with errors."

    I've barely read half-way and this post is already filled with more errors than Joseph claims mine is.

    "I read it again just now, and at no point are Kathleen or Camille cited as experts who provide medical evidence."

    They do, Kathleen Seidel is Offit's main source of criticism of Geier's research on mercury and testoserone-binding and at one point Offit cites personal communication with Camille Clark to claim various therapies for autism "have never been shown to work." Yet at one point he said, referring to SafeMinds advocacy, that evidence would "no longer be determined by science but by a parent group," as if he's not doing the exact same thing.

    "As most doctors, he most likely sees autism from a purely medical perspective."

    In fact, he utilized none of his medical credentials to write that book.

    "If a therapy is shown to be "effective and true," it's no longer an "alternative" therapy. It's simply a therapy."

    Unless it challenges mainstream practices.

    "Other than Kathleen and Camille, Dr. Offit's book features Peter Hotez, Professor of Microbiology and Tropical Medicine at George Washington University School of Medicine; and Dr. Roy Richard Grinker"

    He left out Dr. Michael Fitzpatrick, trustee of lobbying group "Sense About Science" whose top funding source is the British Pharmaceutical Industry Association.

    "I don't know about Dr. Hotez,"

    He doesn't know about Dr. Hotez? He's president of the Sabin Vaccine Institute, an organization that receives millions of dollars annually from Wyeth, Merck, Aventis and GSK each. And yet, Joseph is unaware of this?

    "and doctors are obviously bound to have connections to the pharmaceutical industry"

    That's an overstatement if I've ever heard of one.

    "just as, say, the Geiers do"

    Just because a doctor uses pharmaceuticals such as Lupron or Androcur in his practice doesn't mean he has ties with the industry. It's no wonder Joseph's previous statement was so overblown.

    "but I seriously doubt Dr. Grinker has such ties."

    I thought Joseph read Offit's book, Grinker is clearly ND.

    "first of all. If you have zero confidence and zero ambition, it's improbable you will achieve much, regardless of how smart you are."

    This is a straw man argument, no one in the study reportedly had "zero ambition."

    "there's a significant body of science on the effects of self-confidence on success, failure and performance."

    Just because you have ambitions and confidence does not mean you'll be successful, as those wishes may be totally unrealistic, just like how believing autism is not a disability is an untrue fantasy.

    "shows that Mr. Crosby has no idea what neurodiversity is. It's not a concept that is married to autism."

    Of course it's not, and I made that quite clear in my article. If neurodiversity could be applied to strokes it could be applied to just about anything, which shows just how absurd it is.

    "The study is about neurodiversity, not about autism. I'm not sure what's so hard to get about this."

    The study I critiqued in my article was in context of the BrainBlogger article that cited it, which is about autism. Furthermore, I am autistic. In fact the site I write it for is entitled "Age of Autism," which is why I focused primarily on autism. I'm not sure why it's so hard for Joseph to get this.

    "what the results of the study tell us is that it's in everyone's best interest for it to be more prevalent among anyone with a learning difference."

    Sure, if you enjoy taking it at face value without any further examination.

    "From the study, it appears that the split on views is about 50/50 among those with learning differences."

    The study only evaluates 27 people. Maybe there was selection bias as many people who don't see their autism as positive or neutral would not want to participate and discuss their conditions, which would explain why there is such a disproportionate amount of noise coming from those who profess neurodiversity. Plus, the study does not even clarify if that ratio extends to autism (Aspergers).

    "The article that cited it was actually quite critical of neurodiversity."

    It assumed that these ND views were expressed among autistics in this study, when the only autistic account in this section of the paper was of a purely anti-ND view and the study was limited in this sense in that it did not even evaluate whether neurodiversity was more prevalent in some LDs than others. So for all we know, autistic accounts may have been unanimously against neurodiversity. That is what I would call a misrepresentation.

    "At no point did it make it sound like most autistic students adhere to neurodiversity."

    At no point did I claim this, just disputed the assumption made in the BrainBlogger article that neurodiversity extended to autistics in this study, which was not confirmed by anything in the official write-up.

    "I don't know if Mr. Crosby was pressured to produce his critique, and had a hard time coming up with proper arguments to refute the research in question."

    I'm writing a full-length, point-by-point rebuttal to his . I'm sure that would answer his question.

    "Either way, his critique is a complete disaster,"

    He really needs to speak for himself.

    "and frankly, he should be embarrassed."

    I am, for Joseph.

    ReplyDelete
  58. Jake, you're just showing you don't know what in the heck you're talking about.

    In a kangaroo court which exonerates vaccine-makers from liability and is not even part of the US justice system.

    The VICP is administered jointly by the U.S. Department of Health and Human Services (HHS), the U.S. Court of Federal Claims (the Court), and the U.S. Department of Justice (DOJ).

    Plus, these vaccine court cases are always hidden, otherwise we'd have known why the government has paid $1.6 billion in vaccine court compensation fees since 1988 as reported by CBS.

    The Baily Banks case was written about by Kathleen Seidel on March, 2008. The decision was available online, probably since late 2007.

    He's right you know, it opposes the thought that autistic people are "poisoned" no matter what the source, whether it be amalgams, fish, coal emissions etc., a thought I believe in.

    You misunderstand. It opposes labeling people as "poisoned" when there's clearly no evidence that they have been. Whether people have actually been poisoned is a scientific matter, independent of neurodiversity.

    Just because a doctor uses pharmaceuticals such as Lupron or Androcur in his practice doesn't mean he has ties with the industry.

    The Geiers filed a joint patent application with TAP Pharmaceuticals.

    Just because you have ambitions and confidence does not mean you'll be successful, as those wishes may be totally unrealistic,

    Of course not, and no one argued that. The question is: Do self-confidence and ambition help to some extent some of the time? It seems silly to suggest they don't.

    just like how believing autism is not a disability is an untrue fantasy.

    I'd say most neurodiversity advocates believe autism is always a disability, and probably all believe autism is often disabling. So that's an irrelevant point.

    Of course it's not, and I made that quite clear in my article. If neurodiversity could be applied to strokes it could be applied to just about anything, which shows just how absurd it is.

    In your article, you expressed surprise that the researchers were applying neurodiversity to something other than autism. That just shows you have a naive view of the concept of neurodiversity.

    Neurodiversity applies to all neurological differences, as the name implies. There's nothing absurd about the correct application of a concept.

    The study only evaluates 27 people. Maybe there was selection bias

    Are there any indications of selection bias, or is that purely speculation?

    Furthermore, I am autistic. In fact the site I write it for is entitled "Age of Autism," which is why I focused primarily on autism. I'm not sure why it's so hard for Joseph to get this.

    That made no sense, but I think it's pertinent to point out that many posts at AoA are not at all about autism.

    So for all we know, autistic accounts may have been unanimously against neurodiversity. That is what I would call a misrepresentation.

    And the researchers overlooked this fairly crucial data point in your view? Right.

    At no point did I claim this,

    You said: "Presenting it as if it reported that autistic students and graduates adhere to neurodiversity is a misrepresentation within the article that cited it." You absolutely claimed that the BrainBlogger article misrepresented the preponderance of favorable views of neurodiversity among autistics.

    ReplyDelete
  59. I skipped some in the first pass:

    I'm sure the children of the five parents on the AoA team would love to write for AoA, tragically they cannot.

    You see that makes no sense? Why would children love to write for AoA? How many children do you know who blog about politics? Neither my son nor Kev's daughter nor David Andrew's daughter nor Kristina's son write for the Hub. What does that have to do with anything and why would it be tragic?

    Is he saying that all low-functioning autistic people, since they can't state otherwise, are ND? Because that's what he is implying.

    No, Jake. I'm going to assume you just didn't get it, and you were not actually dishonest is your representation of what I said. I just made the observation that while it's true that ND advocates are high functioning intellectually (which is often made a big deal of) the same is true of autistics who actively oppose neurodiversity. There's nothing surprising or remarkable about it.

    I've barely read half-way and this post is already filled with more errors than Joseph claims mine is.

    Fact: You haven't identified a single error.

    They do, Kathleen Seidel is Offit's main source of criticism of Geier's research on mercury and testoserone-binding

    False. This is what the book says (page 141 hardback):

    "Mark and David Geier were correct that previous research had shown that testosterone could bind to mercury. But they neglected to mention that binding occurred only in a test tube at very high temperatures and with the use of benzene, a toxic chemical not found in the body. The Geiers' Lupron therapy was based on a condition that doesn't happen in nature."

    At no point does he say that he's basing this on Kathleen Seidel's expert opinion. All you have to do is go look at the original paper. In fact, I'm pretty sure that the Geiers' ridiculousness about testosterone and mercury was first noted by Prometheus, who is a scientist with pertinent credentials. It doesn't matter either way how the information was discovered. The facts reported in the book are based on data from a paper.

    and at one point Offit cites personal communication with Camille Clark to claim various therapies for autism "have never been shown to work."

    Page number?

    According to the index, Camille Clark is only mentioned in pages 222-224. This is the part at the end of the book that reads like a series of interviews where parents give their opinions. Certainly Camille gives a number of opinions (she is a de facto autism expert) but I don't see that particular quote, and she is not cited as a medical expert, nor are her views presented as supporting evidence in the argumentative part of the book.

    Didn't David Kirby interview parents for his book? Haven't parents with no relevant credentials written papers about autism epidemiology, about toxicology and so forth?

    That particular criticism seems extremely superfluous, not very well thought out, and it's wrong either way.

    "If a therapy is shown to be "effective and true," it's no longer an "alternative" therapy. It's simply a therapy."

    Unless it challenges mainstream practices.


    Provide one example.

    ReplyDelete
  60. "Plus, these vaccine court cases are always hidden, otherwise we'd have known why the government has paid $1.6 billion in vaccine court compensation fees since 1988 as reported by CBS."

    What complete line of bullshit. We do know why - because of compensable, non-autism claims. You don't need to rely on CBS reports, you can get this straight from the U.S. Department of Health and Human Services website.

    Link

    "He's right you know, it opposes the thought that autistic people are "poisoned" no matter what the source, whether it be amalgams, fish, coal emissions etc., a thought I believe in."

    Aside from Jake's persistent mischaracterization of neurodiversity, he has been unable to provide one shred of evidence to support his belief in autism as mercury poisoning.

    See comments here.

    ReplyDelete
  61. I didn't think I'd have to re-iterate this - as it's quite, quite obvious - but advocacy in any medium requires a minimum performance in a medium related skill set in order to be noticed as an advocate.

    Pointing out that most ND advocates are high functioning is a worthless endevour. Thinking it actually means something is to demonstrate ignorance of what an advocate actually is. If someone lacks the capacity to advocate, then - regardless of thier actual beliefs - you won't notice them advocating.

    In addition, for those of us who understand the idea of neurodiversity, the idea that the ND is 'disproportionately noisy' is absurd and ridiculous.

    Not only are organisations such as the NHS, HPC, CSCI, as well as condition related charities involving more and more clients in consultations and decision making (thanks to ND friendly documents such as Nothing About Us Without Us) but the health and social professions are gradually incorporating more and more ND-friendly ideas and attitudes, even starting to lean towards NDesque standards of ethics and practice.

    Anyone who thinks ND is only a small group of people chattering away on blogs is making the mistake of treating the concept of ND and the ND movement as the same communal entity. They are not, in the same way that McDonalds is not the concept of fast-food service, even if they adhere to the attitude and idea.

    Once anti-ND's stop making these school boy errors (along with the other errors they seem to keep making all over the place) then it might be worth listening to what they say. If, however, they can't even be bothered to update their knowledge, then there's no reason to include them in discussion.

    After all - if they don't bother why should we?

    ReplyDelete
  62. "

    ""If a therapy is shown to be "effective and true," it's no longer an "alternative" therapy. It's simply a therapy."

    Unless it challenges mainstream practices."

    Provide one example."

    I'm not sure what Jake is on about here.

    Many therapies have challenged mainstream practices and mainstream practices have been vastly changed both by law and by internal forces. Repeatedly and often at great expense and in the face of opposition.

    If a therapy is efficacious then there's no reason why it won't be accepted.

    Even if Jake could give an example it wouldn't mean what he thinks it does. If it goes against mainstream practices then there is a reason why it goes against those practices, and this needs to be looked at.

    Sometimes therapies aren't accepted because they are hugely unethical (such as shock therapy) or simply far too expensive.

    p.s. to D'oC

    Yup, Jake is yet another example of a person who will happily claim information is being hidden, yet doesn't appear to have looked where any reasonable person would have looked first.

    ReplyDelete
  63. To add:

    There IS a reason why a efficacious therapy might not be accepted.

    The supportes simply didn't provide a good enough arguement for why it should supplant or complement what is already in existance.

    Case, 1, end of.

    ReplyDelete
  64. Oh Jake Crosby was reading this was he?

    I've got a few choice words for you, young man. You know very little about Neurodiversity. Talk to someone who knows what it really is - like me.

    You just might learn something about yourself.

    ReplyDelete
  65. Joseph, go to the DOJ website and you'll see how wrong you are:

    The VICP is administered jointly by the U.S. Department of Health and Human Services (HHS), the U.S. Court of Federal Claims (the Court), and the U.S. Department of Justice (DOJ).
    "The Department of Justice (DOJ), which represents HHS, consistently works to ensure that fair compensation is awarded in every case that meets the eligibility criteria." http://www.usdoj.gov/civil/torts/const/vicp/about.htm

    So, the DOJ administers vaccine court, only to represent the public health organization that is accountable? How could it be part of the US justice system if the Department of Justice, in vaccine court, is working for the HHS? No wonder the Simpsonwood attendees did not get in trouble despite violating every sunshine law. The members included people from the National Vaccine Compensation Program, meaning the DOJ was involved in the illegal meeting!


    "It opposes labeling people as "poisoned" when there's clearly no evidence that they have been."

    And Verstraeten emailing colleques with tables that were never meant to see the light of day showing hugely increased relatives risks for autism with increased thimerosal exposure asking them to help him bring it down isn't evidence? What about the CDC destroying the raw data behind these tables? What about how they moved the VSD to a private company to avoid public access? What about how they lied about their preliminary results? What about that final Verstraeten study published in Pediatrics which was so unbelievably trashy and uninterpretable which conducted while working for GlaxoSmithKline, and undisclosed COI? What about the rest of the garbage dump of rashy epistudies done by people with industry/CDC ties that are no better?

    If NDs really are open to this idea, then why would Kathleen Seidel take offense to her child being labeled "inherently toxic?" Why would you state when there are a number of studies such as one done at Harvard showing higher levels of mercury in autopsies of autistic brains as opposed to NT ones? Is this claim relying entirely on the garbage dump of Verstraeten, British, Danish, Fombonne, NEJM, California and Italian pseudo-epidemiology? If not, what other "evidence" to support this do you provide?

    "The Geiers filed a joint patent application with TAP Pharmaceuticals."

    First of all, TAP no longer exists, it was a venture between Abbott Labs and Takeda Pharmaceuticals that was terminated last year. Secondly, wouldn't the reason why they filed it through TAP's lawyers was because TAP made Lupron, which their protocol was reliant on?

    I find it funny that Seidel then brings up an unrelated scandal caused by TAP, now mostly owned by Takeda which makes the vaccine for Japanese Encephalitis, containing 17.5 mcg of ethylmercury in pediatric doses and a whopping 35 mcg for adults.

    "Do self-confidence and ambition help to some extent some of the time? It seems silly to suggest they don't."

    Of course they can, but your "zero-confidence" argument is a straw man.

    "I'd say most neurodiversity advocates believe autism is always a disability, and probably all believe autism is often disabling."

    Neurodiversity sees autism as having strengths and weaknesses and that only society is to blame for problems of autistic people, not their conditions as well. These strengths, however, are not autistic characteristics as much as NDs such as yourself like to claim, and autism itself is huge problem for us, though I'll agree mentalism is also huge problem.

    "In your article, you expressed surprise that the researchers were applying neurodiversity to something other than autism. That just shows you have a naive view of the concept of neurodiversity."

    No, I simply find applying the word "neurodiversity" to strokes especially ridiculous, considering the fact that its a potentially fatal clogging of blood vessels in the brain.

    "Are there any indications of selection bias, or is that purely speculation?"

    I'd say the small number of people in this study and the fact that the authors referred to the actual conditions as "neurodiversity," making them already biased towards this particular mindset are indicators of this.

    "I think it's pertinent to point out that many posts at AoA are not at all about autism."

    Except that I am autistic, in case you haven't noticed, everything I write relates to my experiences on the spectrum, aside from the Sebelius post only because it was a previously dead issue. I was also responding to the study in context of the article I linked, also about autism.

    "And the researchers overlooked this fairly crucial data point in your view?"

    No, reread what I said. I used the word "article" not "study," which means the article that cited it since autistic accounts from the ND perspective were mentioned nowhere in the study write-up.

    "You absolutely claimed that the BrainBlogger article misrepresented the preponderance of favorable views of neurodiversity among autistics."

    I did, but I said that it stated that "most" autistic people believed this, nor that it even did this out of a preconceived bias. It could have just been the result of not reading the study in full, but merely the abstract.

    "What does that have to do with anything and why would it be tragic?"

    Actually, some of them are old enough to blog, email, IM, and use the internet like everyone else but can't b/c of their ASDs.

    "I just made the observation that while it's true that ND advocates are high functioning intellectually (which is often made a big deal of) the same is true of autistics who actively oppose neurodiversity."

    Probably because people with severe autism can't advocate for themselves, I don't think anyone would want such a disability.

    "Fact: You haven't identified a single error."

    Aside from factual inaccuracies and gross misrepresentations of what I said, I guess you're right.

    "At no point does he say that he's basing this on Kathleen Seidel's expert opinion."

    He cites neurodiversity.com. If he can get criticisms of this study elsewhere, why does he rely on Seidel's website? This woman clearly displays her early close-mindedness to any studies showing links between mercury and autism, letting her emotions get the better of her, and yet Offit relies solely on her to debunk the testosterone-thimerosal link by lying that it does not happen in nature. In contrast, if you look in Kirby's book, studies by biochemist Dr. William Walsh clearly shows a correlation between MT dysfunction(lack of tolerance for mercury), and testosterone, and later studies by Dr. Boyd Haley confirmed this by noting an increase in death of testoserone-exposed cells and decrease in the death of estragen-exposed cells when both groups were exposed to mercury. Kirby used two scientists to back this up, and Offit used one non-scientist ND librarian in an attempt to refute it, claiming without evidence that this "does not happen in nature."

    He also used a quote by Kathleen Seidel criticizing Mark and David Geier's medical credentials. My question: What are hers?

    "In fact, I'm pretty sure that the Geiers' ridiculousness about testosterone and mercury was first noted by Prometheus"

    Provide me with a real name that has an "MD" or "PhD" attached, not someone fake with a name from Greek Mythology.

    Speaking of fake experts, Offit cites "Controversial Therapies, details supplied by Camille Clark, personal communication," on page 121. He's a doctor, he shouldn't have to rely on someone with solely a BA to provide him with "details" about autism therapies, especially if he purports to use his medical credentials to boost his credibility and smear others for supposedly not having sufficient medical backgrounds.

    "Didn't Kirby interview parents for his book?"

    That's not my point, my point is that Offit is hypocritical to attack people he disagrees with for not having medical backgrounds when he clearly relies on people with no medical background for medical information in his book, especially when in some cases its substituting testimony from an ND librarian for biochemical research.

    Listen to this recorded interview that was censored from a documentary of former Merck Vaccine Chief Dr. Maurice Hilleman admitting to bringing the AIDS virus into the country in monkeys for vaccine development and how he said there was no warning to the public about SV40 cancer virus in polio vaccines because "this was a scientific affair for the scientific community" and that vaccine patenter Dr. Albert Sabin didn't want to inform the public because it would cause a backlash against his vaccine. He also says yellow fever vaccine contained leukemia and at one point joked, "we'll weigh down the Russians with tumors and win the Olympics."
    http://www.youtube.com/watch?v=edikv0zbAlU&feature=PlayList&p=46A9C35660FA38C6&playnext=1&playnext_from=PL&index=28

    "What a complete line of bullshit. We do know why - because of compensable, non autism-claims."

    Yes, like Hannah Poling merely having "traits of autism," when in fact she has DSM-IV diagnosed classic kanner's autism. I wonder how many other cases there are that weren't leaked like this one, wrongly listed as "non-autistic." If there were 100 more of these cases would each and every one still be "unique?" 1000?

    ReplyDelete
  66. Jake said: "I'm sure the children of the five parents on the AoA team would love to write for AoA, tragically they cannot."

    To which Joseph replied: "You see that makes no sense? Why would children love to write for AoA?"

    Absolutely. What would they want to write about that would be relevant?

    And: "How many children do you know who blog about politics?"

    I don't know many, if any!

    And: "Neither my son nor Kev's daughter nor David Andrew's daughter nor Kristina's son write for the Hub."

    Dunno about your son's age, Joseph, but my daughter's 10; Kev's daughter is much younger, and Kristina's son is around the same age as my daughter (give or take a year or two). At these ages, most kids couldn't give an gnat's wang about politics, medicine, social policy or health care policy. Their concerns are much more immediate: my next meal, what I'm playing with (if I'm playing at all), will I get to see my DVD before bed time, and so on. My daughter's quite 'bright' (yes, I'm one of three psychologists who have conducted assessments of her; I had to, because there is nobody else in Finland with the tests and the language skills to assess her in English - and since she is bilingual, she needs to be assessed in English as well as in Finnish)... she loves to talk about numbers and forces and universes and lovely things like that (well, having started in mathematical sciences myself, I find them lovely; and so does she!). Even with these - for a 10 year old - esoteric interests, mention government policy or medical issues outside of "we're going to the doctor to see about that sore tummy" or how social policy affects her enjoyment of life or how educational policy is going to affect her experience of school... she just turns round and buggers off; and this is what most kids (autistic or not) will do. There's no earthly reason to assume that - just because autistic children are autistic - they'll want to write about their experiences or thoughts on any autism-related blog/posting-site.

    And: "What does that have to do with anything and why would it be tragic?"

    And there is no tragedy in it.

    ReplyDelete
  67. I am in search for a Kent Adams who once lived at Sunset Pointe Apt. complex on Wodman Ave in Van Nuys California. If this is the right person please contact me via email address: najavuh@gmail.com

    Naja
    an old, old friend

    ReplyDelete