On….(wait for it)…..the Age of Autism blog.
Have you recovered yet?
A new guest piece has been posted on AoA from a student who has Asperger’s Syndrome named Jake Crosby.
Its a very well written piece and Mr Crosby expresses his viewpoints very well. However, I don’t agree with many of them at all although I respect his right as a self-advocate to say them. He begins thusly:
These are the ways I have been impacted by my AS; I can’t think of anything positive it has done other than my sense of accomplishment after overcoming some of its challenges.
Well, you are in good company! I have heard many of the autistic bloggers on the Hub say exactly the same thing. Of course, some go further and say that their right to be who they are and live as they are within a sometimes less than tolerant society is also gratifying. I wonder if Mr Crosby feels the same.
However, a small, new camp is emerging from within the Autistic community of Aspies who believe AS and even Autism in general is a great thing.
Hmmm, I’m not sure I’ve ever seen anyone say autism is a ‘great thing’ with no form of context. I’ve seen it simply referred to as part of who someone is and that it (as an entity) has no properties. In other words, its neither great, nor terrible, it simply is what it is.
I’d also like to educate Mr Crosby about this ‘small new camp’ he refers to. It is neither small, nor new and nor indeed does it refer solely to Aspergers – or even autism. Its first use dates back to 1997 – a year before the emergence of the autism/vaccine hypotheses. It now encompasses tens of thousands of people worldwide and has widened to include people of varying neurological differences such as OCD, Tourettes, Dyspraxia, Dyscalcula, Manic Depression (chest bump) and a multitude of others. See ‘Mad Pride’ for example. I don’t believe any of us are saying that we do not live with a disability. What I gather from conversations with others like me is that the word ‘disabililty’ does not define or limit our existence. That there is good as well as bad and that nothing in life is as black and white as Mr Crosby sadly wants to see it.
Mr Crosby makes a variety of intelligent challenges:
This politically correct group of people says that Autism is not a disorder, but a “way of life.” They deny that any environmental factors such as mercury and vaccines could have caused Autism and they claim they were meant to be Autistic. Most of all, they rail against any potential for a “cure,” and see wiping out Autism as synonymous with wiping out the people themselves. While there are many mildly Autistic people like me who are busy trying to overcome our challenges as much as we can and severely Autistic people who are struggling to even speak a word, this crowd is getting more and more vocal about their staunchly pro-Autism views.
Again, Mr Crosby is attempting to paint life as black and white. Autism _is_ a disorder. It is also a way of life. I also know of at least one neurodiversity advocate who staunchly believes vaccines cause autism, although my personal opinion based on all available evidence is that it does not.
I personally don’t rail against a cure. I have no opinion on one since one does not exist. I know Alex Plank who runs Wrong Planet – a very large online Asperger’s community – feels the same. In 2006, the actor Stephen Fry made a documentary about manic depression. I’m sure if one visited any number of Torrent sites one would find it. At the end of it, he asked all his interview subjects a question: if you could press a button that would remove your manic depression, would you. the vast majority said ‘no’.
Sadly, Mr Crosby’s piece then degenerates into the core anti-vaccinationism we all know exists on Age of Autism:
Despite this, these people are determined to see AS as a positive advance in nature, not a negative impact from toxicity or any other cause. When confronted with the emerging information that the 6000% increase in Autism is related to poisons in vaccines that are overused, they instantly say there’s “no evidence,” citing the pharmaceutical/CDC party line. Similarly, they ignore mountains of independent studies that show the link to Autism just as the CDC has. While the “neurodiversity” advocates and the pharma-goons clearly have separate agendas, they act similarly.
With all due respect to Mr Crosby, these views and statistics are ridiculous and not based in any kind of reality or science. There are in fact, no reputable studies that link vaccines to autism. Unfortunately, a goodly remainder of his piece carries on in this vein. he then reiterates his main theme:
If only they would stop pretending Autism is in any way beneficial, and realize that their true strengths are who they really are, and that their disability is not. I can’t speak for all, but as someone with Autism I can say these people with my same condition who claim to speak for me do not. I do not believe these people speak for the majority of people with AS. No one else I have known with Autism has actually said they liked having it and I have yet to actually meet these people who do.
Mr Crosby seems to be missing the point of self-advocacy. To _some_ autistic self-advocates, their autism _is_ beneficial. To Mr Crosby, it seems it is not. It is largely a matter of perception and choice in my opinion. I have no idea who (if anyone) speaks for the majority of people with Asperger’s and I’m not sure it really matters that much. What matters is that all people with all forms of disability have a right to express their opinions and share their experiences as those who live the daily reality of living with those conditions.
It is great to hear autistic self advocates like Mr Crosby speak out – particularly on a site like Age of Autism where the views of autistic self advocates have never been welcomed before – and aside from the rather embarrassing and unnecessary sections of his post regarding vaccines, he makes some good and interesting points.
However, I feel that he has, like many before him and no doubt many after, misunderstood what neurodiversity is. I’d gladly have a conversation with him regarding neurodiversity and what it actually is, who it affects and what I think it means to me and my family.
Left Brain Right Brain 
Well, I’d like to invite him to Autscape and lock him in a small room with Larry, Dinah and Shiva 😉
Kev, obviously you have not read Frank Klein’s old web page which is no longer online where he says autism equals genius and greatness. Are you forgetting estee klar-wolfhond’s the joy of autism blog? Also Michelle Dawson’s very political research and writings, trying to show that autistics are not impaired.
It seems to me that there are at least some persons in the neurodiversity movement who seem to think that all persons on the spectrum think like them and are militantly against a cure that does not even exist. Alex Plank, contrary to what your post says is one of those people and has given interviews urging against a cure and making the unfounded statement that most autistics are against a cure.
Though I disagree with what Jake Crosby says about vaccines causing autism, I am very grateful for his essay showing all the problems with the neurodiversity movement and what a bad condition autism is. I hope to see more essays like his in the future and I think I will.
Jonathan, as I’ve said before, a poll on Autism Speaks asking “Do you want to be cured?”, had the result 95% NO, 5% undecided. Similar polls on WP and AFF have had similar results. So Plank’s statements are not unfounded.
And a 1000 more essays from autistics saying “I broken, need fixing and it’s mercury wot done it” will be as a single photon in the laser-beam of common sense and good science. You know NT’s can make a hash of their lives too without good parenting, opportunities and the right environment.
yeah, socrates, sort of like a poll taken in a small town in alaska saying that 99.9% of persons want john mccain and sara palin to be elected and extrapolating it to the whole country.
Hi Mr Mitchell,
If you find factual errors in anything I’ve written or am in the authorship of, I would be very grateful if you would point this out, so I could improve my work (I’ve written about how I welcome factual criticism here http://www.autistics.org/library/dawson-response.html ).
Instead, you misrepresent what I do, in a sophisticated attempt to discredit me and my work. This is what autism advocates do, to scientists whose refereed findings don’t conform to autism advocacy views and agendas. I don’t see how this helps autistics.
I’m not sophisticated like you, Mr Mitchell. I do not have a degree from a major university, like you do. I’ve never attended university at all, as a student.
I’m stuck with the plodding, incremental work of science and ethics (the aspects of both that I can actually do), with taking the risk of testing my ideas via peer review in credible journals, with things that can be verified, with what I know about human rights in Canada (neurodiversity being part of the general idea that disabled people should have human rights).
I don’t do much else, and your extreme sophistication goes right over my head.
Jonathan, over to you then. Show me any evidence that most autistics want to be fixed. And I think Ms Dawson is waiting for a reply too.
Typically, gadfly gets it wrong, thusly:
“Kev, obviously you have not read Frank Klein’s old web page which is no longer online where he says autism equals genius and greatness. Are you forgetting estee klar-wolfhond’s the joy of autism blog? Also Michelle Dawson’s very political research and writings, trying to show that autistics are not impaired.”
1. By all means read Frank Klein and what he says is that autism confers the positive as well as the negative, which is his view of the matter and therefore as valid as the gadfly’s. What I suspect is that the gadfly does not appear to have a cognitive impairment but does suffer from a lack of education – he does appear to be overselective in his data choices and has ignored significant contrary data in the past when it didn’t suit him. Blame the spec ed system for getting it wrong. With autism, they usually do.
2. As for denigrating Estee’s blog – shame on you. Try understanding that there can be joy in anything if you want to find it. Looking for the negative and only the negative and deliberately ignoring anything else isn’t an exercise in realism, it’s an exercise in self destruction. The fact that you have been severely damaged by other people’s perceptions of you – they certainly weren’t looking for any joy, is an indictment of those people, not autism, not you.
3. If you want to quote Dawson, it helps to read her first. Classifying it as ‘political’ is ludicrous. Political how exactly? I’ve never asked but it would be a worthwile question – does Michelle do ‘political’? I doubt that, but she’s the only one who can really answer. As for the research ‘trying to show that autistics are not impaired’. We’ll put that down to the aforementioned lack of education. Far better than blasting you for impugning the motives of a very large number of respectable researchers and for not being able to read or comprehend the results of that reseach. Using one very simple example that Michelle described with the Raven matrices study; one of the participants scored the bottom of the bottom on every test except for the Raven at which he excelled. No question that this person was and is severely impaired, absolutely no question about it. But what are we to do with the equally undeniable fact that this person also excelled on the premier test of fluid intelligence? There’s a very big question mark, right there along with all the impairment. which should make people start thinking about their perception of people particularly autistic people, maybe people like you. If the spec ed people had had more question marks about you, maybe you would have been given a real education, which makes me wonder why you don’t have much more appreciation for Michelle’s work. After all, it could help someone just like you one day.
Poor Jake Crosby – someone ought to warn him about fair weather friends. He’ll be welcome in those circles as long as he spouts the right message. Otherwise he is expendable.
I’m also getting fed up with these agenda driven parodies of neurodiversity. The people who think they can narrowly define it are the one’s who really should not. Invariably they get it wrong usually, by equating it with the celebration of impairment. Neurodiversity says nothing at all about whether a characteristic associated with some form of wiring is either good or bad, it might be, it might not be. I generally hold to the very loose philosophy that you greatest strength just might be your greatest weakness and it all depends on the circumstances. Neurodiversity also says you are much better off getting as much data and understanding as possible about your ‘wiring of interest’ if you really want to improve outcomes for people. This is not the way interventions for autistics happen since most, including ABA, are based on someone’s pet ideology, not any hard data known about autistics.
Kev, perhaps you can post the creed of the neurodiversity movement. I thought it was
The brains of autists are differently-wired, not incorrectly wired or damaged.
The problems autists face is due to society not accommodating their autism, and not from the autism itself.
You cannot separate the person from his autism. The person is his autism.
The world is better off with autists.
The above are true for all autists regardless of their level of functioning.
One cannot tell whether a poster is part of the ND movement or not. However some posters have stated
Cure = genocide. This goes beyond the prospect of genetic screenings resulting in abortions. If a cure was found which caused no harm to the person, there would still be one less autist. The autistic soul of the person would be replaced by an NT one. This many have claimed as genocide. Now if one is a supporter of ND, how can one be neutral on a cure as a cure would decrease the neurodiversity in this world?
There have been calls to celebrate autism, not autistic culture, but autism itself. If one accepts autism as a disability, then it seems strange to celebrate it. It seems to me what is celebrated by ND supportive parents on the web are the accomplishments their children make despite their autism, as well as teachers classroom aides, therapists, and great-hearted people who help us. Personally this summer I am celebrating my daughter teaching herself to swim. I enticed her into deeper water, but as I couldn’t instruct her she had to figure out what to do herself. I was there in case she sank, and she has gone in six weeks from someone who couldn’t keep her head above water to being able to dog-paddle the 25′ width of the pool. I am not celebrating her great increase in perseverations nor her avid zeal for destroying all printed material. I am celebrating that a few days ago weh my wife said, I just need to find our daughter’s shoes, that our daughter went and got them. She may not do that again, but I celebrate that it happened once. I am also celebrating that she is learning through TeachTown. I am not celebrating that walks with her at salt marshes became well high impossible as she stopped off every step to rip up some Salicornia, and flap that pickle weed to smithereens. We averaged about a quarter mile an hour. It did not stop us from going. The place is devoid of poison hemlock a very common plant in these parts. The last time we went the Salicornia was barely touched. Yes, I celebrated that.
But what about celebrating autism itself. I’ve read claims that:
all the great breakthroughs in science and many of the social advances are due to autists; autists are not marred by the common human failings such as pride and greed, and thus can evaluate data without the prejudice intrinsic to NT individuals; autism is the next step in human evolution. It is better that a person be autistic than have friends. If the autist wants to communicate through tantrums, that is his choice and to try to go against those wishes is cruel.
Now the last two ideas are not widely held, I don’t believe by the ND community. I don’t think any parent of an autist feels that way. All are trying to help their children become more abled. There is a feeling that such things are okay because the child will still be an autist and thus neurodiversity will be preserved. There are many in ND pooh-pooing early intervention programs and their potential to move people off the spectrum. I’ve seen children benefit, apparently, from these programs. These children now are social with friends and nearly indistinguishable from other children their age. How could someone who is an ND supporter support such programs, of they have the potential to reduce ND. If one person moves off the spectrum ND is reversed and his autistic soul has been murdered. Most ND supporters feel that moving off the spectrum is impossible and thus allow for interventions which pose no threat to the child, and or have not been proven ineffective, nor are just plain silly. However if any intervention does prove to be able to move children off the spectrum, then again how could an ND person support it.
Now on the creed of neurodiversity. A person who cannot communicate, cannot toilet themselves, needs constant supervision, has no learned what may harm them does not have a differently-wired brain, they have one which is damaged through improper development.
Many ND people are against talking about low vs high functioning. This I feel is that they want to discount the low-functioning individuals. Unless you’ve totally drunk the ND Kool*Aid it is impossible to claim that autism in any way benefits those who are low-functioning. I’ll let the higher-functioning individuals discuss what benefits if any it brings to them. But to claim any great commonality with low-functioning individuals is absurd. Indeed those higher-functioning may be better served by societal accommodations than by a cure. But to claim the same for the low-functioning is something I cannot grasp.
A person is not their disability. As children move up the spectrum they are happier. There is no evidence a child who has moved off the spectrum pines for those days without friends to return to his separate world, to not be able to communicate once more.
Many ND supports are quick to point out the absurdity of many biomedical interventions labeling Dan doctors as frauds. It does not matter if these doctors believe strongly in what they are doing as right.
However does the ND movement even consider that some claiming to be autists are frauds. They are no more autistic than my dog.
“As a child moves up the spectrum they are happier”. Well, take a look at the kind of things the AS/HFA high-school kids are saying on WP. And look at what AS/HFA adults have to say. And then look a little deeper for the reasons for this unhappyness – bullying, harassment, discrimination. By NT’s. Yes indeed, we do need a cure for that. We don’t want to be cured into the kind of NT monsters that drive the fat kid with glasses to suicide.
In the UK, doctors aren’t allowed to do what they “strongly believe to be right”. Fortunately we have the law and medical ethics to protect us (in theory). Good medicine is based on hard science, hence the expression “evidence-based medicine” rather than “strongly-held-belief based medicine.”
The clinical staff at the UK’s only specialist autistic spectrum disorder hospital, Milton Park in Bedfordshire don’t and won’t use the expressions LFA/HFA. So it’s not just ND that realises there’s not distinct and easily definable boundary.
My experience shows that in my family the more ability the autistic person has to act like an NT the more unhappy they are.
People don’t expect as much from the people I know who are “lower functioning” but they expect totally typical abilities in areas where the abilities are not half of what typical people have. In other words, for the “higher functioning” people in my extended family they are like people with weakened limbs from polio who others demand they run marathons. No excuses accepted. Do it or be treated like a bum or a liar.
The stress for higher functioning people can be incredible and it can drive them to suicide. “Lower functioning” people face a whole ‘nuther set of problems (and they, too, can and do commit suicide) but for MY kid, I run interference and try to eliminate as much of those problems as possible. NO one bullies (or over-pressures) my kid. If they do they face the wrath of a very tall, slightly scary person with “baggage” from a lifetime of being a victim of bullying.
Ah, Ms Clark, you’d understand my zero-tolerance of bullys and my, ah…, “direct actions” dealing with them.
_”Kev, perhaps you can post the creed of the neurodiversity movement.”_
There isn’t one, except beyond the general idea that difference does not equate with worse.
_”I thought it was_”
I’ve certainly heard some people espousing some of those notions. I take a more moderate line myself.
_”One cannot tell whether a poster is part of the ND movement or not.”_
To me, it is easy to tell. If I meet/speak with a person who is adamant that cure is the only option then I assume they are not following any ‘ND’ principles. Beyond that, its all good to me.
I’ll get back to you when such a thing is even remotely likely to exist. I simply can’t deal with such an unlikely set of events.
Why? Do you see autism as solely a disability and nothing else? There _is_ evidence to suggest strength in an autistic condition. There _is_ evidence to suggest that the roots of manic depression contribute to culture and creativity. I simply can’t see how something is as black and white as you seem to want it to be.
Then, I think you would be incorrect. We don’t even know what autism _is_ – how you can blithely assume that any accomplishment a person makes is in spite of who they are is disingenuous given what we know about the nature of autism.
These are all great things to celebrate. But I can’t see your point. Are you saying that its not right to celebrate anything other than normal development? That I should not have pride in the things and the way that my autistic child learns?
Those thoughts are quite clearly twaddle. I’d be very interested to see where you found them.
I think a lot depends on _what_ early intervention programs you mean. And also where you live. In the UK, I do not exaggerate when I say there is _nothing_ for parents unless one is very, very, very rich. Your sole option is a state run ‘special school’ or mainstreaming. And you hope for the best. There is little to no ABA, speech therapists visit kids about once every six weeks (if you can get one). Our ‘interventions’ are literally what we can put together from reading about methods. Anyway, to get to your point, I have no idea why you think anyone who believes in ‘ND’ would be horrified at the thought of their child having a social life. ‘His autistic soul has been murdered?’ Good grief. I have no idea what interventions (if any) might move a person ‘off the spectrum’ and I heavily doubt there are any. You’re again asking me to have an opinion on something that doesn’t exist.
The creed? You have seen this written down? Come on.
You could easily be describing my autistic child 3 years ago. I certainly don’t see xyr as damaged. Except in a strict medical description. Is that what you mean?
I think you’re confusing interchangability with commonality. People who function more of the time at a level higher than my child cannot be interchangable with her in terms of their lifes experiences. However, they do share commonality. I’m afraid I see your position of saying that two people with different ‘shades’ of the same thing unable to share commonality as absurd. They share a mode of thinking if not a specifity of thinking. A way of reacting to stress, if not a strategy of dealing with it. I also disagree that autism can’t benefit those like my child. Xe picked up pretty advanced IT skills at a very young age. I have no doubt that this was due in part to the way xyr autistic mode of thinking sees things. Xe also demonstrated from an extremley young age a fascinating physical aspect of autism – perfect balance. So what? you might thnk – but the point is xe gets a lot out of it.
Not in its entirety, no. But to claim it forms no part of them is laughably naive.
You are several steps beyond science. There is actually no evidence the interventions you refer to can move a a child off the spectrum at all.
I think it matters a great deal. A great deal of physical harm can be done to a developing body by some of these people.
I’ll say it again. ‘ND’ is not about solely autism. As for frauds, I’m sure there are some. There are frauds everywhere. What would be your suggestion?
The one thing that unites people who believe in ND principles is that we believe that people who are different – through whatever means – should have as much say as those who are not. Its about respect.
I’ve seen presumably neurotypical, pro-biomed and rabidly pro-cure parents on Internet bulletin boards try to pass themselves off as autistic adults using sock-puppets. What they do is suddenly appear as a new persona (sock puppet) on a parent bulletin board and say, “Oh, gee, what’s this stuff you’re talking about? Chelation? You say it cures autism? Well, I used to be happy being autistic, but now I have suddenly acquired a desire to be NT. Tell me, other biomud parent, how can I buy this chelator? Which doctor’s do IV chelation? And who is Andy Cutler??? What is DAN!? Who is Yasko? Oh, look, I am chelating myself now, and I feel so much better! I hate the ND who tried to stop me from being better.”
I’m not kidding.
I know of one parent who has created at least two of these “autistic” sock puppets (and been exposed), and I know of another who has created one of them. They’re not that good at creating sock puppets. They make the same points that the biomed fraud perpetrator makes, so it’s not that hard to spot them after a day or two, sometimes sooner if they make big mistakes in covering up who they really are.
I can only think of one person who appears in public (not just a fake internet persona) that I believe is a fraud and s/he’s totally beloved by the biomud community because s/he says s/he hates autism. No wait, maybe there are two like that. They both want to be famous and speak for autistic people, one wants to write a book. I think these two are frauds because they don’t look autistic to me on their videos. They look like they are working hard to fake it. I could be wrong, of course, so I won’t name them.
Hi Michelle, I was unaware that your TMOB essay was published in any peer reviewed journal. I thought it was just something you self-published on your web page. If it has been published in a peer reviewed journal perhaps you can cite the reference for me.
I did not say there were any factual errors per se. Just your opinions that autism is not any kind of disorder. In TMOB you equate autism with the problems of gay people versus straight people, though as far as I can tell being gay does not intrinsically disable someone. Also you compare autism versus neurotypicals with men vs. women. Surely you are implying that autism, if a disability at all, is a social disability rather than a medical disability. You have also stated in informal writings that at least part of the reason autistics have bad outcomes is because of the fact that society perceives them a certain way. This is not a matter of factual correctness versus factual error but your personal opinion. Of this there can be no doubt. You have also implied in this non peer-reviewed essay (since you seem to take such a high stock by the fact you can get your name on some articles that have been published in some peer review journals, yet TMOB has never met any sort of peer review as far as i can tell) that anyone wishing for a cure for their sibling, who is blatantly impaired, destroys property and is even violent is some sort of intolerant bigot.
Since you seem to take such a high stock in the peer review process and scientific rigor I am surprised you have never published any of these findings about autism not being an intrinsic disability and the people wishing for a better lives for their loved ones and themselves being such bigots, I suggest you submit those findings to peer review. If you can’t get them published in a journal then according to your own arguments your statements in TMOB must have zero credibility.
I got a bachelors in psychology nearly 30 years ago, yes, but with a very mediocre GPA and only half my education was spent in major university the first half being in a community college. So my sophistication really does not exceed yours, except for being sophisticated enough to understand that this is an intrinsic disability not just a societal construct which you seem to fail to understand.
I believe Dr. Mottron (who Michelle works with and who is a world class autism researcher) has included the idea that autism is not intrinsically a worse condition than non-autism in his peer reivewed papers. He has a book that puts this idea out there, but it’s in French. Maybe Michelle can elaborate on that or correct me if I’m wrong.
It saddens me that Alyric just has to stoop to nastiness and personal attacks on my character. Apparently the only way he/she can win an argument with me since she can’t invalidate any of my arguments with any sort of facts.
Jon, I don’t see anywhere your character has been attacked.
What bugs me about the “autism stinx” essay by the clown blog’s new friend is that one of their “editors” has written this about her own apparently “low functioning” daughters: “like my three girls, got the ear wax/vomit/dog poop flavor” of autism. Kim elaborates that Asperger’s is the “raspberry cream or root beer flavor” of autism.
Meaning that she sees “Asperger’s” people as having no problems at all and so don’t have any reason to complain but that the autistic people like her vaccine damgaged girls (one of whom is entirely unvaxed, go figure) have lives that are entirely encapsulated with disgusting concepts like “dog poop” or “vomit flavor”.
But for some reason she has cultivated some kind of friendship with someone who she oddly thinks coined the word, “Aspergian,” and that guy says he has some talents that directly arise because he has Asperger’s. That guy also (as most autistics) admits that he’s been seriously impacted by the disabling aspects of Asperger’s. But Kim would say that his life is all, “root beer,” because he can write a blog. I guess he’s acceptable because he won’t take a stand against the vaccine and epidemic nonsense. It’s pretty funny when one of the vast “hidden horde” acts like they aren’t part of that vast “hidden horde.”
Well Ms. Clark, I met Dr. Mottron at an autism speaks dinner (interesting he has a cozy relationship with this organization michelle and alyric detest so much). I asked him if the Raven’s matrices was any sort of predictor of success in life, showing that if someone did well on it, they would have occupational success, social success etc. He told me no, that there was no indication that the results of that test showed any success in life. He also intimated to me that though he valued Michelle’s input on some stuff he had many differences of opinion with her. I am not exactly sure of his viewpoint, but I did not get the impression that he believed in neurodiversity at all as anything valid. I don’t think he has a lot of the same beliefs that michelle has at all. Since he lobbies for funding from an organization that has expressed as their main goal the cure and prevention of autism and mentors a post-doctoral fellow luc Keita who receives a grant from autism speaks, I can only come to the conclusion that Lauren Mottron must be very much in favor of a cure for autism, otherwise he would not have this relationship with autism speaks, so I don’t think he has the political views that Michelle Dawson has who makes the strange claim that science and politics are not intertwined yet has one of the most political positions imaginable and seems to deny that she has a political agenda with her writings.
You can read what Dr. Mottron says about autism in public. There was an article in a Canadian paper a year or so ago where he was very much saying that autism is not a disease. I don’t know when you met him.
http://autismdiva.blogspot.com/2006/10/autistic-to-be-specific.html
This is from 2006.
“Mottron makes an interesting analogy saying it’s not right to describe a dog as “the negative of a cat,” or to say that a dog is a genius at fetching slippers, but defective because it can’t climb trees like a cat.”
I don’t want to speak for Michelle (when I try I usually get it wrong) But I understand that she does not deny that autism is a disability, it’s just that it’s not only a disability.
http://www.isn.net/~jypsy/AuSpin/lead.html
Part of the problem with your question about the Raven’s and “success” is that the autistic people who look mentally retarded but who are not according to the Raven’s test are not having their particular kind of intelligence (shown by the Raven’s) exploited. It’s like expecting all paralyzed polio survivors to become regular marathoners in order for them to be considered successful, instead of using what the polio survivors have to work with to make their lives successful. So they test a “retarded” autistic using the wrong tests and then expect them to be retarded for the rest of their lives. Shove them in the retarded bin and forget about them, not find their talents and use them so they can be “successful” in a different way.
“What I suspect is that the gadfly does not appear to have a cognitive impairment but does suffer from a lack of education – he does appear to be overselective in his data choices and has ignored significant contrary data in the past when it didn’t”
“We’ll put that down to the aforementioned lack of education.”
Kev, these are nothing but cheap shots that alyric made alluding to the fact that I was a special education student for 8 years. If you can’t see that these are personal attacks against me, you are obviously intoxicated with bias towards the neurodiversity movement.
Alyric is nothing but a petty cyberbully and hate monger who only tries to refute my arguments with the cheapest shots imaginable because she has no other way of refuting my arguments. She does this to me all the time even in a thread in another blog in which I did not even participate that was about harold doherty she just started attacking me out of the clear blue sky.
I am proud of the fact that even though I went to a special ed school for eight years that i was able to complete college and work in somewhat gainful employment for nearly three decades. I doubt alyric spent a minute of her life in special ed, yet in spite of her obviously superior intellect she just engages in ad hominem attacks against me nonstop and never presents any facts. She engages in a nonstop hate fest. And also makes some of the most bigoted statements about autistics imaginable.
Fine, let her attack me, let you deny that her posts are nothing but vicious personal attacks. We have an old saying in the U.S. about judging people by the company they keep, something to think about as the neurodiversity movement tries to put a positive spin on itself. Alyric’s juvenile rantings and abuse are not doing your movement any favors nor is your denial that he/she, this person who is too cowardly to even sign their own name when they are bashing me and insulting me.
“Kev, these are nothing but cheap shots that alyric made alluding to the fact that I was a special education student for 8 years.”
Kev, don’t sweat it – happens every time -don’t like what I say -it’s ad hominem. Of course I knew gadfly had spent all that time in spec ed. The point I’m making is should he have? Don’t think so. This is not an unintelligent person, far from it – so should he have spent all that time getting an inferior education? Hasn’t that contributed measurably to the woe is me outlook on life and not being able to get past it? My other point is that this is not uncommon and Mottron’s outfit is among the first to supply some of those all important question marks. Is this guy grateful? Naturally not – doesn’t affect him after all.
Oh, btw, there are many varieties of peer review and not all of them take place in journals. In my opinion TMOB passed the most rigorous peer review of them all – a really nasty ad hominem without one shred of scientific rebuttal of any of the arguments made – and all by behavioristis who publish regularly. You can read all about it on autistics.org.
(Totally lost count of how many times I’ve tried to post this, and it has not worked. Now I’ve taken out the only link. Here goes again).
Hi Mr Mitchell,
You wrote, “I was unaware that your TMOB essay was published in any peer reviewed journal.”
Please show me where I wrote that it is.
Also, if you can point me to what exactly in my work (formal or informal) you are criticizing, by for example providing quotes, then I could address this, if the criticism is factual.
By factual, I mean criticism about something I’ve actually written, rather than, e.g., what autism advocates like yourself sophisticatedly claim I’ve written, implied, etc.
E.g., the word “disorder” appears in the text of TMoB in any form only twice; once in a quote from the Auton trial decision, once in a description of children who were not autistic. Which one are you objecting to?
E.g., TMoB does mention social construction (i.e., “societal construct”) views of autism, because these views have been promoted by major behaviour analysts, including Ivar Lovaas. In TMoB and elsewhere, I have not at all supported social construction views of autism. I have done the contrary. Is this what you are objecting to?
E.g., Ivar Lovaas has, throughout his long career, had major NIH grants for two major projects to apply the same kind of treatment, with the same rationale and goals, to two different populations, both of them regarded as severely pathological and (without early ABA-based interventions) doomed to terrible outcomes. Is it your view that no one should report this verifiable information?
E.g., you claim that I’ve written that “people wishing for a better lives for their loved ones and themselves” are “being such bigots.” Wow. That’s worthy of FEAT, and of Harold Doherty.
It takes some extreme sophistication, among other things, to (1) read what I wrote, then (2) decide that what I wrote wasn’t really what I wrote, then (3) decide that what I really wrote was, e.g., that people who want better lives for their loved ones are bigots–an idea you have to invent yourself.
Not much I can do about that kind of sophistication, etc. You have shown (in the examples above, and in many others) that no matter what I write, you will disregard this and claim I wrote something else.
So I’m not remotely able to begin to cope with the sophistication of a person who repeatedly claims, e.g., that I deny that autism is a disability, when I’ve done the opposite. This is what you do (and many other sophisticated things along the same lines) and this is way over my head.
I’ve spent years taking the position–including at the Supreme Court of Canada–that autism is a disability (and explaining to all who ask that neurodiversity is part of the general idea that disabled people have human rights), and then a sophisticated person like yourself comes along and repeatedly claims that I deny that autism is a disability. So no matter what I write or do, you will claim I wrote or did something completely different.
That is just way, way too sophisticated for me, as is your sweeping dismissal of the Canadian Down Syndrome Society as people “using reaction formation and denial as psychologic defense mechanisms” (I’d provide the link, but I’ve taken it out to try to get this message posted). You are light years over my head.
For relevant (in numerous areas) formal work, see Mottron et al. (2008), Gernsbacher et al. (2006), and Dawson et al. (2008). Dr Mottron and I are in the authorship of all these papers. Among them, these papers:
1. mention neurodiversity;
2. address the scientific and ethical problems arising from autism being regarded as a disease or disorder;
3. address the pervasive problem of findings in the autism literature invariably being interpreted as autistic inferiorities, deficits, or impairments;
4. provide an overview of ABA-based autism interventions;
5. cite Dr Lovaas’ work with feminine boys;
6. address the scientific and ethical consequences of autistics being dehumanized;
7. reject the presumed superiority of non-medical models of autism;
Etc.
Most people I know would be thrilled to have the privilege of a degree from a prestigious university. I certainly would be. It’s a fantastic accomplishment.
And while I remember, yes, my view is that, like all other human beings, autistics are affected by public policy, public discourse, the law, the jurisprudence, whether we are or are not regarded as human (in the jurisprudence, in the scientific literature, etc), whether we do or don’t have human rights, whether we are or are not protected by recognized standards of science and ethics (including professional ethics), etc.
I suggest that Mr Mitchell’s claims about Dr Mottron’s views should be read in light of Mr Mitchell’s often repeated claims that, e.g., I deny that autism is a disability.
I’m too tired to repeat for the nth time that the fact that I criticize a scientist, an organization, etc., does not mean I “detest” them. And I know that no matter what I actually write, Mr Mitchell will claim that I’ve written something completely different. I need only point out that I don’t do politics (I’m lousy at it; not sophisticated enough) and presto, Mr Mitchell is there claiming that politics is all I do.
So far as I can tell (I’m sure Mr Mitchell will correct me if I’m wrong), if Dr Mottron applies for and gets research funding from the Canadian government (as has happened), Mr Mitchell would conclude that Dr Mottron must be a supporter (and lobbyist) of the Conservative Party of Canada and must adhere to their ideology.
It is accurate to say that I have been and continue to be a harsh critic of Dr Mottron and his work. There are a lot of public statements from both of us to this effect. I disagree with Dr Mottron in numerous areas, just like I disagree with other people I’ve collaborated with (formally or informally; there’s a lot by now).
And scoring well on any intelligence test does not guarantee that a person will not be miserable, just like having a degree from a prestigious university does not guarantee that a person will not be miserable.
RE: having a degree from a prestigious university and being miserable….
I’m just miserable because I have to pay back a school loan I took out to get a degree from UC Davis which is associated with the MIND Institute, which apparently does stuff like burying data that would tend debunk the vaccine/autism hysteria. In some ways UCD could be “prestigious” but the MIND Institute sort of sits on it like a dunce cap, at least for the time being, ruining the reputation of UCD and ruining the value of the diploma I’m still paying for.
From ABC News … Why is anyone even still debating the possibility of a link between vaccines and autism? After all, for years, many government health officials, advisors and vaccine manufacturers have said there’s no association.
Here are a number of reasons why the question remains open:
1. While government scientists, advisors and pharmaceutical companies have been responsible for infinite lifesaving and life improving medical advances, they are not infallible.
• It’s the same group that originally thought it was safe to use x-ray machines in shoe stores, gave pregnant women Thalidomide for morning sickness and once allowed mercury in medicines. They assured us Vioxx and Duract were safe painkillers, prescribed Rezulin for diabetics and then denied any of them were responsible for patient deaths. If we never questioned that group, we might not have discovered that Fen-phen and the dietary supplement Ephedra are not safe weight loss products, that antidepressants in kids can lead to suicidality and Viagra can cause blindness. The list goes on.
• When it comes to vaccines, the same group failed to predict that the 1990’s rotavirus (diarrhea) vaccine would have to be pulled from the market after infant deaths. They encouraged use of the oral polio vaccine (eventually discontinued after it gave too many children polio). And they allowed the use of a mercury neurotoxin preservative in childhood vaccines, only to admit later that they hadn’t thought to calculate the cumulative amount kids were getting as more and more vaccines were added to the childhood immunization schedule.
• Recent history demonstrates that too often, government health officials, mainstream doctors and pharmaceutical companies aren’t on the leading edge of alerting us to health risks; they’re bringing up the rear. Patients feel left to fend for themselves, seeking independent research and opinions on their own. They and their dogged, relentless determination have often been the catalyst that eventually brings medical dangers to the forefront.
2. Government scientists, advisors and vaccine manufacturers often take an all-or-nothing approach to vaccinations.
• Government officials and infectious disease experts I’ve spoken with are fearful that if vaccine side effects are better publicized, or if a link between vaccines and autism and ADD were made, the public would overreact and lose faith in the entire vaccination program. The result, they’re afraid, would be parents refusing to give their children any vaccines, leading to new, deadly epidemics of preventable diseases. That indeed would be a disaster. However, their fears have resulted in something I call an all-or-nothing approach: they tend to promote nearly all vaccines for nearly all children as equally necessary and equally safe. Yet at the same time, if asked, they agree not all vaccines are equally safe, equally beneficial, equally necessary and equally tolerated by each individual child.
• Through the Internet and other resources, parents are now able to find research on vaccines and read it for themselves. They compare the government’s all-or-nothing approach to the research and become skeptical that the government is presenting the whole picture on vaccine safety generally.
3. Government officials and mainstream scientists who dispel any vaccine/autism/ADD link have ties to vaccine makers.
• There’s so much overlap among pharmaceutical companies, government scientists and advisors that the information they provide at least has the appearance of a conflict of interest. Government scientists and advisors often do not mention their connections to the vaccine industry when they provide opinions on the vaccine/autism/ADD issue.
• One of the best examples of this is the landmark autism/vaccine study published in Pediatrics. Early in his study, the lead author, CDC’s Dr. Thomas Verstraeten, found statistically significant associations between the amount of mercury (thimerosal) exposure kids got from their childhood vaccines, and a wide range of brain disorders. However, the published version of the study (the one the authors say is accurate) found no evidence of a link to autism. Not disclosed was that Dr. Verstraeten had left CDC midstream during the study and had gone to work for Glaxo, a vaccine manufacturer. That failure to disclose was criticized in a later publication of Pediatrics, but it got little mainstream attention. Also getting little attention was a letter from well-respected scientists, also in Pediatrics, who echoed what parents of autistic children had been saying for months: they questioned the use and exclusion of certain data from Dr. Verstraeten’s study that eventually reduced the statistical ties between vaccines and neurodisorders.
• University and government researchers and advisors often do research for vaccine companies, help develop vaccines (even profit from them), and/or are paid to consult for them. Often, these researchers do not disclose their industry ties when they publicly dispel the notion of a link between autism or ADD and vaccines.
• Lastly, the CDC is inextricably tied to vaccine makers through contracts and other business and financial relationships that open the door for the possibility of conflicts.
4. Non-profits which dispel any vaccine/autism/ADD link have ties to vaccine makers.
• Non-profits that promote vaccinations have ties to vaccine makers that they often do not disclose when giving their opinions on vaccine safety. One example is “Every Child By Two.” This group contacted CBS News several years ago in an unsuccessful attempt to prevent one of our stories about the vaccine safety from airing. In forms filed for the IRS, the non-profit lists an official from vaccine maker Wyeth Pharmaceuticals as its Treasurer. It lists vaccine maker Chiron as a paid client.
• Another example of a non-profit tied to the industry is “The Vaccine Fund.” Its President from 2000-2005 was Jacques-Francois Martin, formerly CEO of vaccine maker Sanofi-Pasteur, CEO of vaccine maker Chiron, and President of the International Federation of the Pharmaceutical Manufacturers’ Association. While at The Vaccine Fund, his salary was paid by a company that says it “has developed particular strength in the vaccine industry and vaccine development.”
5. The dual role of the CDC undermines the appearance of fairness.
• There is a perceived, if not real, conflict of interest with the government’s Centers for Disease Control (CDC) heavily promoting vaccines, but also responsible for monitoring adverse events. At least two respected medical journals, the “American Journal of Public Health” and “Pediatrics” have published letters or articles recommending “greater independence in vaccine safety assessments” apart from “the highly successful program to promote immunizations.” In short, the CDC’s bread and butter is achieving high vaccination rates. But that role is in conflict with the agency’s responsibility to fully research and disclose adverse events that could, in theory, bring down vaccination rates.
6. There is no definitive research proving a link between vaccines and autism or ADD, but there is also no definitive research ruling it out.
• Something rarely reported is that while there’s no definitive study linking vaccines to autism or ADD, there is also no study definitively disproving a link. And there’s a substantial body of peer-reviewed, published science from places like Columbia, Yale and Northeastern suggesting a link, or pointing to the need for further study.
• Many credible voices deny a link. But many other credible voices support the idea of a link. One example of the latter is George Wayne Lucier, formerly a senior official at the National Institutes of Health in Environmental Toxicology, an NIH advisor, member of the National Academy of Sciences Committee on Toxicity Testing and a scientific advisor for EPA who concludes “…it is highly probably that use of thimerosal as a preservative has caused developmental disorders, including autism, in some children.” A lengthy Congressional investigation also concluded that the autism epidemic is likely linked to vaccinations.
7. Those who say autism and ADD are not linked to vaccines do not know what is causing the epidemics.
• The most frightening part of the autism/ADD epidemics is that if, indeed, they’re unrelated to vaccinations, that our best, brightest public health experts still have no idea what is causing it. Excluding ADD, one out of every 150 American children are now being diagnosed with autism.
Vaccinations have provided lifesaving miracles in public health. However, it’s undisputed that they are also responsible for many serious adverse events including brain disorders and, rarely, deaths. Trying to maximize the potential benefits of vaccines and minimize the harm shouldn’t be seen as a threat to the nation’s inoculation program, it’s merely a logical step forward.
One scientist who testified for the plaintiff this week in The Vaccine Court said there’s a way to test children for a hidden hole in their immune make-up that makes them susceptible to bad immune reactions from vaccinations. He said that, ideally, every child should undergo such a test before their first vaccinations. But he also said the test is very expensive and so “not worth it.” Many parents might disagree. If they knew such a test was available, they’d find a way to pay for it. But such information has to be disseminated to the public before a first step can even be considered.
Mainstream medicine initially said that autism was caused by mothers who weren’t affectionate enough with their children. If that doesn’t teach us that we should always seek further knowledge and not necessarily accept what’s spoon-fed to us by certain experts…then nothing will.
This comment from B Campaigne is very old but still interesting. It was ignored at the time by all the other posters. Someone might have told him that there is no link between vaccines containing thimerosal and autism ADD. There is no epidemic. Where are all the old people with autism? They are finding new people everyday whose diagnosis was missed. Thimerosal was used as a preservative to save money and it is not nor has it ever been a neurotoxin. After all it was used in everything from contact lens solutions to infant nasal sprays. There could never be an accumulation because a child could receive 10,000 vaccines at once since,at the moment of his birth, he comes into contact with millions of antigens. We don’t need anyone to ensure the safety of vaccines because we have the CDC. There are no conflict of interests going on. That is just a product of his imagination along with any other conspiracy theories. His is the type of thinking that the government cannot be trusted but biomed charlatans are welcome to make money using fake cures or worse yet harmful torturous remedies. Chelation anyone? How about a few hours in the Hbot? If that doesn’t do it there is always Lupron and a good bleach enema. Still not happy with your child? Is he having meltdowns? Maybe he has had enough.
Socrates please explain http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip—How-huge-industry-feeds-parents-desperate-cure-children.html
Seems there are a few scofflaws over there. I didn’t mean to imply these doctor’s were not practicing quackery, and given that one wonders why they can hang out their shingles, The medical community needs to police itself better. The ND community should not be so accepting of all who cLaim to have autism. Yes NT children can be cruel and low-functioning individuals may lack this ability, it is not absent from the higher-functioning.
Ms Clark how many of the people in your extended family actually have a diagnosis from a psychiatrist or other such professional? You might want to talk to the Genetics Department at UCSF. I don’t doubt that people who have to pretend they are something they are not, are not happy. How many autistic children do you know? I know several and two which now have NT friends and play with great fun and zeal. One never went to a Dan doctor, and the other did. The first had a mother that was lucky enough to have sisters with children the same age. She recognized something was wrong very early and had her child enrolled in early intervention programs, and also her son was exposed to his cousins on a daily basis. The other child had early intervention coupled with the Dan protocol. I can talk incessantly to those parents explaining that the protocol had nothing to do with their success. They look at my child and wonder why I don’t try it and thst I have problems with the Dan motto of , “Success is not guaranteed, but every special needs child should be given the chance the protocol provides.”
The first child I haven’t seen in a few years. The second is younger and I I see him play tag and laugh with the other children, I don’t think he is crying on the inside.
Kev, the question on how a person who supports ND can be neutral on cure is hypothetical. One can test the logic of one’s beliefs even if such a cure is unknown.
I never said that autistic children learn despite who they are, I said they learn despite their disabilit. Your use of who is interesting. Was this a slip, or has autism gained personhood?
Perhaps there is some benefit to the high-functioning, but yes it is nothing but bad for the low. On the bipolar artist. If the artist’s depression is at such a state that suicide is it’s likely result, that person should be given lithium even if it kills off his creativity.
I will give autism credit for aiding a little in my daughter’s learning how to swim. As she has no concept of drowning overcoming that fear was unnecessary. Her lack of understanding as to what can harm her does not benefit her so much should she ever wander to busy intersection.
Twaddle, they are not. These thoughts tend not to come from blog owners, but from participants. I don’t save every reply I get, but what I have stated is true to the best of my knowledge. I may have misunderstood a post or misremembered something.
I didn’t know that autism results in perfect balance. I never heard that before. What proportion of autists share this trait?
Congratulations on your daughter’s computer skills, something that is indeed often linked with autism. I’ve seen no such benefit in my daughter. Of course you don’t know if your daughter’s skills might have come earlier or be greater should she not have autism.
Autism delays or prevents the acquisition of social skills. Man is a social animal. My daughter cares little about this, but she is at times curious about what other kids are doing.
The more high-functioning individual often finds this inability to navigate socially as depressing. Perhaps resulting in suicide. The autists who pick up these skills seem happier.
Here’s another thought. If someone tells you that they’ll pray for your daughter’s recovery, would you think that person’s intentions were good? If you responded that you would pray that the person’s next child would be born autistic, could you claim your intentions were good. If not why? Does this impact your support for ND?
I don’t like Dan Doctors much. My wife will vouch for that. Especially when it comes to our church’s giving such people a platform. I also don’t like people pretending to be autistic for financial gain, nor those who are married, socially active, never having spent one day without friends or in special education claiming they are autistic. They discovered their autism in after their children were born.
I’m rambling here. It’s getting late and I need to finish. I agree that all autistics share some common traits. However there are those who believe this makes them better able to determine what is best for a child than his parents.
They may or may not be cheapshots, however they’re certainly not attacks on your character which was your original claim.
The ND community should not be so accepting of all who cLaim to have autism.
I would be curious as to how this woud be workable. Should everyone have to have a diagnosis they can hold up before becoming a ‘member’?
OK, fair enough. I guess it really depends on what one’s personal definition of ‘ND’ is. Would I campaign against a cure? Probably. I see choices such as the one you offer to ‘high functioning’ autistic people being able to stay high functioning disappearing in a heartbeat.
I think you’re misunderstanding me. I am saying that their disability is part of who they are. I am trying to present to you the idea that there is no black and white.
Sorry, but my personal experience contradicts that.
Lithium (or carbamazepene etc) do not prevent suicide attempts. HOwever, I have no issue with your assertion that medication is required. However, being medicated for something is not the same as not having it.
Well, I’m glad you’re able to bend just a little.
Again, you misunderstand. I am not saying you made them up. I’m saying the expressed thoughts themselves are twaddle.
So far I’m aware of four kids, all girls. Kassiane is one.
True, but my younger childs IT skils are not so prodigious at a similar age. I find it persuasive, given that and given the known link to autism that her IT skills developed so quickly due in large part to autism.
I would say it never prevents. Curiosity is a precursor of sociability I would think.
Very true. What has this to do with neurodiversity? Are you suggesting that the ND beliefs speak against social programs? I’ve seem autistic people say that socialisation is not the be all and end all of existence but I’ve never heard them say that its a negative aspect of NT life that should never be worked at with autistic kids.
I’d think they were misguided but well intentioned.
I’m not sure I get you. Are you testing the NT worlds belief in neurodiversity or mine?
Whether you like it or not, a test and a diagnosis are what they are. If someone has these, then that is that. A persons outward circumstances do not reflect their situation. Lots of people, I understand, discovered their autism after a child’s dianosis. I’m not entirley sure whats so bad about that.
A personal anecdote: my childs autism specialist told me once after her yearly visit that he considered me a likely candidate for high functioning autism. So, I followed it up and I’m not autistic, or at least not enough to get a diagnosis. The point is that its far from an uncommon state of affairs for people with any neurological difference to be married, have kids, hold down jobs – and then discover they have this neurological difference. You seem far too quick and in posession of far too few facts to judge.
Are there? Who? Where?
I can only really talk about the family members that I am particularly familiar with (not the second and third cousins I’ve heard tell of). The ones I’m thinking of who were higher functioning, two of them were in a state school for retarded/disabled children back in the 1940s. They are both dead now. They didn’t get official diagnoses, but I’m confident that they were on the autism spectrum because my child is the grandchild of one of them and my child is on the autism spectrum, and seems to have personality traits more similar to those two than to me. In other words, my kid’s autism, to me seems more like my ex-husband’s family’s ASD traits. Another of my extended family (I’m including those by marriage) is a homeless person and so as far as I know hasn’t been diagnosed, though perhaps that one has been in some sort of contact with medical people and been diagnosed by now. I don’t know. That person is homeless, has been for years now, and is currently living on the streets of a big city, that’s all I know about him/her now. I know enough about that person’s childhood and adulthood to say that I’m sure that s/he’s autistic and struggling because s/he seems vaguely normalish and has had too much pressure to carry a load that s/he cannot carry. Forget UCSF, I’m still waiting for the results of my kid’s genetic testing from another UC associated hospital/clinic. It’s been months now.
My ex-husband’s family have some traits that look like Angelman’s, but it’s not Angelman’s so maybe an interstitial duplication 15q… or something like that.
How many autistic children do I know, as in know well from “real life,” besides my own? Is there a reason that would make a difference? I didn’t say that my experiences with the “lower functioning” people in my extended family being happier than the ones who are “higher functioning” means that that is true for everyone.
I WAS an autism spectrum baby and child, now I’m an autism spectrum (Asperger’s) adult, and contrary to some mercury moms statements, I do have an official diagnosis. I’ve also met many autism researchers and none of them seemed to have a doubt that I have Asperger’s. I’m a data-point in some of Simon Baron-Cohen’s research! 🙂 Dr. Uta Frith said I was an example of someone with “low central coherence” even, you can hear her say it on a video that is on the MIND’s website. “Low central coherence” is one of Dr. Frith’s keystones of autism.
The people in my extended family (my blood relatives) who seem to me to be on the autism spectrum are all older people. There are two of them who to me are more obviously ASD people, both of them are dead. My father’s first cousin is one of them, his son was a co-founder of Silicon Graphics…
http://soe.stanford.edu/AR95-96/jim.html
I don’t think that Jim Clark is particularly Asperger’s-like, but he’s got some BAP traits, in my opinion (I don’t know what his childhood was like, but I know a little about his father’s). Take it or leave it. I got my Asperger’s from somewhere, and I see similarities between me and a few individuals in my father’s family (but they’re dead now).
Mayfly, the explaination for this perversion of medicine in the UK can be found on your side of the pond. I’m now totally confused as to the point you were making in your OP.
I see something about my autism which is in my opinion very positive: it makes me who I am to a large extent. I’d have to dislike myself to think otherwise.
It’s true, though, that not even those of us who see autism in an unusually positive light go around saying that autism is “great.” We will say the word ‘autism’ describes a type of person, and so forth. I don’t think you’ll find more supremacists in the autistic community than in communities of other types of people.
Mayfly: “It is better that a person be autistic than have friends.”
Wrong… that’s a false dichotomy, and I’d expect you to know that: one can be autistic and still have friends!
Mayfly: “If the autist wants to communicate through tantrums, that is his choice and to try to go against those wishes is cruel.”
Non sequitor, actually. We can see the ‘tantrum’ as a form of communication, and still be prepared to work with the child in order to give him/her a less challenging but more functional way of communicating whatever it was that the ‘tantrum’ tends to convey. To reduce it all to something as simplistic as you portray it is not only to make a mockery of the work that gets done daily with autistic children (and adolescents… and adults, too!), but it also make a mockery of your own intellectual abilities. Why do that?
Gadfly: “I got a bachelors in psychology nearly 30 years ago, yes, but with a very mediocre GPA and only half my education was spent in major university the first half being in a community college. So my sophistication really does not exceed yours, except for being sophisticated enough to understand that this is an intrinsic disability not just a societal construct which you seem to fail to understand.”
Well, so what if only half was spent in a major university and the other half being spent in a community college? Should you devalue your education because of that? I would certainly hope not! However, I’m going to pull rank: I got a Master of Education degree, in Special Education but taken as Educational Psychology, and within the options for the programme, I specialised in autism. And – given that your degree was earned going on for thirty years ago, I can see why you’d see autism as a purely intrinsic disability. However, it isn’t… think Lewin, Vygotsky, and so on. Things do not happen in isolation, and I’ll give you dyslexia as an example: even if we agree that there is a neurological difference involved (and the results seem to be that there is), it needs there to be a socio-cultural demand on the person that s/he should be able to read and write in order to communicate thoughts and ideas. Without the socio-cultural demand, there is no dyslexia; without the neurological difference, there is no dyslexia. The existence of a disability requires both parts as ‘necessary’, although I’m not sure if they would also be seen as ‘sufficient’ (that’s something that might arise out of a very complicated relationship between the two necessary components.
Gadfly: “Apparently the only way he/she can win an argument with me since she can’t invalidate any of my arguments with any sort of facts.”
I don’t actually see much in the way of factual input in your ‘arguments’, to be honest. You seem to rely on a belief in supposition (i. e., supposing something and assuming that it is correct). In that regard, what Alyric could be referring to in her ‘lack of education’ remark could well be that issue, rather than your having been in special education for eight years. I’m not offering anything in that statement as a fact: I’m just offering an alternative explanation based on what I’ve seen.
Gadfly: “I asked him if the Raven’s matrices was any sort of predictor of success in life, showing that if someone did well on it, they would have occupational success, social success etc. He told me no, that there was no indication that the results of that test showed any success in life.”
The test results can show correlations (which you should know as a psychology graduate), and these correlations are basically between intellectual ability test scores and other test scores (basically, scores on standardised tests of achievement). But correlations themselves are not guarantees: they are coloured by other variables that need to be accounted for in making any sort of predictions based on test results.
Ms. Clark: “Part of the problem with your question about the Raven’s and “success” is that the autistic people who look mentally retarded but who are not according to the Raven’s test are not having their particular kind of intelligence (shown by the Raven’s) exploited.”
The issue with the Raven Progressive Matrices test is this: it is a test highly saturated in what Spearman called ‘g’ – the general intelligence factor. So, what comes out of the RPM test scores is the overall performance score regardless of how the person taking the test actually arrived at his/her result; not a bad thing at all, if I’m honest… but it does limit the usefulness of the test as a test to be used on its own. In other words, there is a need (as with all tests, really) for other information about the person being tested to be accounted for in making interpretations of test scores. With regard to what the RPM does over and above the Wechsler suite, I’d venture to say that it doesn’t isolate the processes involved in arriving at a result to declare… so, as long as one does declare one, what matters is whether it is correct (rather than how it was got). All matrix reasoning tests have this characteristic, incidentally, and this is why they are actually quite useful. And this is not to say that the Wechsler tests have no use: they do… I’ve written on that issue elsewhere.
Michelle Dawson: “And scoring well on any intelligence test does not guarantee that a person will not be miserable, just like having a degree from a prestigious university does not guarantee that a person will not be miserable.”
This is absolutely true. And it is true because it isn’t just what would be called the ‘within-person’ variables (Lewin’s P1 and P2 factors – mental and biological, as he describes them), and nor is it the E1 and E2 variables (Lewin’s E and ‘foreign hull’ – as he described those), that solely (or mutually but separately) influence how life goes on: it’s down to how all those factors interact with each other to bring about circumstances that facilitate either successful outcomes or unsuccessful ones.
Mayfly: “I also don’t like people pretending to be autistic for financial gain, *nor those who are married*, *socially active*, *never having spent one day without friends or in special education* claiming they are autistic.”
Well… you won’t like me then, because I was married, had friends and have friends, and was not in special education. I was diagnosed, though, by two people (both psychiatrists, who noted a developmental trend from the Kanner-type of autism to the Asperger-type as I got older)… sorry, but you don’t get to choose if or not am I autistic: it’s on paper and in my medical records (and, no, I’m not pretending!). Get over yourself, please.
Socrates, as far as where the Dan protocol started. you are absolutely right about its origin. But it appears that the same inadequate governance of such practices exists over there. My point is that one should clear the frauds from your own house before attacking those frauds outside of it.
If I want to have a war with someone from your side of the pond. I can do so at home. My wife is from Bristol.
I invited the family with the child whom I said had moved off the spectrum. He has made great advancements, but he is not off the spectrum
Mayfly, are you trying to get around to naming particular people as frauds? Do you think that many of those who believe that neurodiversity is as valid as racial diversity are sort of covering up for a bunch of NT’s trying to pass themselves off as autistics? Is this some kind of conspiracy or just a huge moral failing that you are imagining? I don’t know of any frauds who are regularly participating in discussions about neurodiversity and respect for autistic people.
I do know of two who seem to be fruads who are loud critics of neurodiversity, because, I believe that they know who has the money and who pays people to speak at conferences (hint, it’s not the ND). One wanted to be a big star and be interviewed by a national TV news program and made a big deal of saying that. Another I suspect of being a fraud is regularly touted by one of the better known mercury moms as being a wonder autistic adult because she wrote a poem about how heinous autism is(it was plagiarized, actually, and easy to show who she plagiarized it from).
So are you going to feel better if you get to name names and say, “Mr. ______ says he’s autistic, but I know for a fact he’s no more autistic than my dog.” And then will you feel better if many of the neurodiversity supporters says, “GASP! We never knew!!!! This is shocking!!!” or is it that you expect the majority to say, “So what? We love it when NT people perpetrate frauds and try to fake being autistic. We think it’s great!”
Really, what’s the point of your hinting at some hideous moral failing of the ND? Does it make you feel better about something else?
“A person is not their disability. As children move up the spectrum they are happier.”
I agree that a people are not their disabilities, nor are they their abilities, their genders or their races. The question of what a person really is has been debated by theologians for centuries, and I don’t have a good answer to it. But I’ve never heard anyone claim that a person’s disability is the sole determinant of who he or she is.
Jake Crosby and Jon Mitchell are “up the spectrum,” and I recall from reading some of Jon Mitchell’s writing that he received treatment and was considered a recovered child. From what they have written, they are not happy. Some parents of low functioning autistic kids say their kids are happy. I don’t think happiness is necessarily a function of where a person is on the spectrum.
Anne: “I don’t think happiness is necessarily a function of where a person is on the spectrum.”
If happiness could be operationalised, and a way to accurately assess the mood of autistic people across the spectrum could be found, this would actually be a good study to do.
Kev, thanks for your replies. On how ND would police itself, I have no idea either. Perhaps people could state whether they are self-diagnosed or not. But I admit that would become tedious.
So you would probably campaign against a cure. Is autism always beneficial? You had mentioned bipolar disorder as contributing to artistic expression. My point was that if the disorder portends suicide then it is detrimental to the person. The fact that person may produce masterpieces is immaterial due to their disorder is immaterial. Art cannot trump a man’s life.
You admit that autistics may commit suicide because they cannot fit into the world, and ask what does it have to do with the ND movement. Is autism detrimental to this person? Would you admit that this person would be better off not autistic. Statements such as, “It’s society which needs to change dodge the issue.” If I am presenting an extreme case, then I’ll tone it down somewhat. What about those destined to spend their lives in institutions. Is autism not detrimental to them. Can you seriously argue that for them a cure would not be beneficial?
Ah, but you say if you allow for this the choices for the high-functioning autistic will disappear in a heartbeat. Well the person whose autism leads to suicide would be high-functioning. Aren’t you saying your fear that high-functioning individuals will be forcibly cured, should prevent its development even when it means people will die and others will needlessly spend most of their days in institutions? If so ND has no claim to high moral ground.
I’m curious as to where this idea of forcibly curing people comes from? Your not the only one who holds it. One person claimed to having a gun in his bedside table in case the time for his cure had come. Paranoia is not a reason to stop the help so many need and many yearn for.
On whether wishing autism on someone is a blessing, I was testing your view. I don’t understand why it makes a difference.
Can I name names, no as I don’t know for sure and I would not accuse anyone personally without more evidence. Also, these people’s belief in their autism in genuine. Many times I read on this blog that nothing should be accepted without evidence. I think the evolution is I have some autistic traits –> therefore I am on spectrum —> therefore I am autistic/Asperger’s. If the ND community asks for irrefutable evidence from those outside if it, then why just blindly accept the statements of anyone claiming to be on the spectrum.
Kev, you said that at one time you had yourself tested as you believed you may have been on the spectrum and the testing informed you that you were not. I don’t know how strong your feelings were, but your story shows the dangers of self-diagnosis. Ms Clark, it does not make me feel good that there are people who hold to the belief they are autistic without a diagnosis. I have no idea as to what I’m supposed to feel better about. I would not call it a moral failing. The person truly believes they are autistic. Fraud was too strong of a word. These folks do not set out to deceive, they are deceived themselves. They however do damage by holding out their lives as an example of autism.
Now some of this comes from their lives being so different than my daughter’s. The term autism has become so dilluted it has lost all meaning. I say this as a person who has struggled with relationships since adolescence, met my wife through an introduction agency because I could not understand how to build relationships with anyone I dated. I have trouble in conversations which have no purpose. I could decide to put on the autism mantra, but to me my daughter’s disabilities are what autism is truly about.
The core definition of autism does not inlcude mental retardation. The definition of autism was created because there were these people who were delayed but not mentally retarded (otherwise they wouldn’t have needed a new category). So people who are autistic without mental retardation are more like “pure autistics” and more like “Kanner autistics,” than those with mental retardation. Therefor one can make the case that a person who has the traits of autism without MR (usually called high-functioning, or middle functioning) is an example of “autism” while your daughter, Mayfly, is not. I wouldn’t make that case. I think your daughter is autistic and mentally retarded, both.
It would be easy for someone to say, “Mayfly is misrepresenting the fact that his daughter is autistic. I have never seen any evidence that she has a diagnosis. He describes a daughter who sounds mentally retarded. His daughter is probably not autistic. His comments upset me. Therefor he is probably a fraud and the “parents” should police themselves and remove people like him from the discussions until they can prove that there children really are autistic and not just retarded.”
No one asks the parents for evidence that their children are really autistic. But if a person says things that upset the parents then the parents may say (I have seen this), “This person from the Internet is self-diagnosed, so is not autistic, therefor what they say has nothing to do with my child, therefor this person is harming my child’s chance at the cure I so badly want for my child.”
But the “cure” that some parents want (maybe most parents) is for the mental retardation to go away. They say, “If my child could read and write and self-advocate like that “Asperger’s” person, then I’d feel my child was cured of autism.” But that doesn’t add up. If they could remove the MR and leave the autism their kid might be exactly like the one they dislike.
Many of the parents want a cure for low IQ and the inability to read and write. And they want that in a pill form. Whereas most parents of mentally retarded kids (who don’t focus on the kid’s autism or whose kids don’t have autism) think of “curing” or improving MR with education and training.
Only in autism, as far as I can tell, do we have this belief that you could take an autistic kid, drug him this way or that, or feed him this way or that or train him this way or that and make him totally normal.
I think that’s because some kids actually do start out looking autistic and end up not looking autistic, so the idea is that it’s possible for all autistic kids to become normal.
For some reason parents of mentally retarded kids seem to “get” the idea of acceptance and many parents of autistic kids are trapped in the feeling of having been cheated out of something and take it out on their kids (by chelating them or continually mourning the loss of the kid they didn’t get).
At any rate, your saying that because someone is self-diagnosed that they are no more autistic than your dog is highly offensive. It looks to me like you are trying to smear all the online autistic adults with the accusation that some of us are totally not autistic (how you **know** this I don’t know) and that somehow the rest of us ought to know who they are and get rid of them or demand that they get a real diagnosis or … what?
Merely being self-diagnosed is not a sign that the person is not really autistic. Having a job like being a doctor doesn’t mean the person is not really autistic. I know of one who couldn’t put his shoes on without being told that the socks go on first. When his partner died (the one who had told him how to get dressed every day), he stopped being a doctor. This person would look at his patients through his wiggling fingers. A parent whose autistic son had been seen by this doctor for a serious disease went online and described what the doctor was like in the examining room.
Now maybe that was all an elaborate fraud, but I don’t think so. The people who were reporting it to a group (several years ago) included the doctor himself, and they seemed as genuine to me as you seem to be, Mayfly. No one would have dreamed of asking the father if his son was really autistic or if he was making that up.
I’m not sure if Jon realizes that a mediocre GPA is the norm. Being NT does not guarantee a top-notch GPA. I doubt that NTs who get mediocre GPAs whine about being NT. In fact, a good portion of NTs never even go to college.
Whenever I see these types of complaints from Jon, I don’t know what to make of them. It’s like he’s saying, “autism is holding me back – I want to be *super*-fortunate!”
Are you aware that sexual minority youths have a high suicide rate? Fact.
Are you aware that sexual minority youths have a high suicide rate?
Why is the relevance of this sort of question? I’ve never heard that for something to be considered a type of person a requirement is that it be beneficial.
Well now that you guys/gals have come in here whining like children and stearing the thread totally off topic AGAIN!
I would like to have posted some rebuts for the Crosby posting, as it does look biased or coached to me, but after having taken the time ro read all this whining and finger pointing (Damn detractors) I will have to go back and see what he said that is more (if it can be) ridiculous than what I have just read (OVER and OVER, WHINERS!)
The more neuro-typical parts of my personality are holding me back!!!! They are trying to define me! I’m still interested in some things that are “popular.” I seek them out and pay for them! Is there a cure???? 🙂
Mayfly wrote back to Kev a whole lot of things. so many of which I have a great deal of trouble with that I’m taking the time to add my two cents worth:
“So you would probably campaign against a cure.”
Why do people keep harping on abnout something that does not exist? Is this sane, is it even reasonable? My thought is that it seriously eetracts from dealing with the here and now, because while you’re waiting for this magic wand, what exactly are you doing?
“Is autism always beneficial?”
Looking for utopia again, which is at least consistent with waiting for a magic wand to solve all your problems. Apply that question to anything, anything at all, the most positive trait of the most socially wired person on the planet and the answer will be ‘no’.
“My point was that if the disorder portends suicide then it is detrimental to the person.”
Utopia again. There are lots of folks who commit suicide and there’s nothing label like attached to them. It seems that it’s not so much what’s up with you but what you make of it – within limits of course. Discrimination of all sorts can drive the most level headed to the brink.
“The fact that person may produce masterpieces is immaterial due to their disorder is immaterial. Art cannot trump a man’s life.”
Yes it can and yes it has, many times over, because their art is their life. I take it that you are not a creative person.
“Statements such as, “It’s society which needs to change dodge the issue.””
Accorsing to that sort of reasoning nothing at all should have been done to alter the course of discrimination against women, blacks and gays, to name a few.
If I am presenting an extreme case, then I’ll tone it down somewhat. What about those destined to spend their lives in institutions. Is autism not detrimental to them. Can you seriously argue that for them a cure would not be beneficial?
Yes you are presentingh the extreme, but we’re used to it. For quite a few years now, parents have been arguing that autism with mental retardation, inaccuately labelled ‘low functioning’ is the norm and we should base policy on that cohort. Actually they are in the minority, since in recent years 75% of folks classified as on the autistic spectrum have no cognitive disability. The vast majority will have PDDNOS and the majority of the rest autism with a smaller number carrying the Asperger’s label. Autistics like your daughter are not representative of ‘autism’ though I’ve also noted that parents will happily accept the 1:150 prevalence and even more happily label it ‘autism’, which is not accurate at all.
“Many times I read on this blog that nothing should be accepted without evidence. I think the evolution is I have some autistic traits—> therefore I am on spectrum—-> therefore I am autistic/Asperger’s. If the ND community asks for irrefutable evidence from those outside if it, then why just blindly accept the statements of anyone claiming to be on the spectrum.”
As Ms Clark has stated already, it would be just as sensible to question parents, particularly of very impaired children because they are often given the autism label, not because they are really autistic but to get better services. The MR label is treated alas with doom and gloom and precious little else. We know that over the years as the numbers in the MR category have fallen, the numbers in the autism category have risen.
“The term autism has become so dilluted it has lost all meaning.”
Hasn’t it just and Kanner complained about it back in 1965. Every cognitive disability in kids coming down the pike got labelled ‘autism’ and that still seems to be the case. Take a look at Hannah Poling.
I guess I should apologize, whatever needs to get discussed happens.
I will try and contain my frustration.
Sorry for the outburst.