Stop Bashing Autism Speaks!
25 Oct 2011, 3:04 pm
vermontsavant wrote:
@aghogday i think what you are talking about is semantic pragmatic disorder(a non verbal leaning disability).i didnt realize they merged that with pdd-nos
I was incorrect in stating Social communication disorder was replacing pedantic language disorder, I remembered it incorrectly and will edit my post. Social communication disorder is a brand new disorder proposed for the DSMV that is not being merged with PDD NOS.
Technically speaking, PDD NOS, is supposed to be part of the new Autism Spectrum disorder in the DSMV.
The problem with it is the new Autism Spectrum disorder has a mandatory requirement for Repetitive Behaviors and Special Interests, whereas right now in the DSMIV, it is not a mandatory requirement for PDD NOS.
The speculation is those PDD NOS folks that don't meet the mandatory requirement might be put into this new Social Communication Disorder, but it is only speculation at this point, since the DSMV proposed revisions haven't been finalized.
Sorry, it's pretty confusing, and my incorrect statement didn't help. Here is the DSMV link that will give you all the official details:
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=489#
Last edited by aghogday on 25 Oct 2011, 3:44 pm, edited 1 time in total.
25 Oct 2011, 3:43 pm
androbot2084 wrote:
The movie Rainman sucks. It portrays neurotypicals as the cool guys and autistics as these idiot savants. Why can't the autistic be the cool guy?
Rainman doesn't even have an autistic guy in it. They found out that the diagnosis of the man who rainman was based on wasn't even autistic. It just goes to show how much the diagnostic system is near to a sham.
25 Oct 2011, 4:04 pm
aghogday wrote:
Hypothetical analagous example:
There is a classification of a disorder for individuals with the inherent characteristic of yawning alot.
There is a classification of a disorder for individuals with the inherent characteristic of yawning alot.
And there is where your analogy falls apart because you said so yourself that black and white thinking is not true with me so it is not inherent because it doesn't refer to all and if it were inherent then lacking it would mean someone didn't have autism, despite the fact that you and I have already said that black-and-white thinking is not inherent in autistics.
aghogday wrote:
There are self-advocates that are reasonable and listen to evidenced based data to form opinions, and there are some that will not budge from an opinion no matter how much evidence is presented to counter that opinion. There is evidence of it in the record.
Yes but Tambourine did not make that definition himself and the point was that apparently this autism was making self-advocates think in black and white when they don't.
aghogday wrote:
Tambourine Man presented the statement that the problem with self-advocacy is black and white thinking, which is part and parcel of autism.
No, it isn't part and parcel with autism. In fact you said so yourself because you said I don't think in black and white and even then you said it was common, not integral like you are now claiming.
aghogday wrote:
It's really not much of a stretch to think that black and white thinking could impact the arguments over this that have created problems.
And that is exactly my point. You spell it out for me yourself. You say it affects their argument and that's exactly what I was arguing against because not only is it an ad hominem insult that doesn't actually disprove their arguments but it also shows that people are willing to lie, yes lie, about self-advocates when they say that all autistics think in black and white when they don't, and you admitted that I don't and that it is 'common', thus not integral, thus not part-and-parcel.
aghogday wrote:
There have been people that continue to state the organization does absolutely no good for autistic people, regardless of any objective evidence presented to refute that statement.
No evidence? There has been evidence that unverifiably proves that they are willing to intimidate teenages with lawsuits for making parodies of them, never mind also not be helpful, of which there is clear evidence that they have not been helpful. And so far I have no evidence that Autism Speaks has changed its tack but I was willing to be open for a while. Don't think you can play dumb with me Aghogday. I have picked apart people who didn't try to be nice to Autism Speaks on this very forum, so don't think I'll let you daub me, a self-advocate, with discriminatory attacks of thinking in black and white terms.
aghogday wrote:
There are many gray areas, though, that can be interpreted in different ways. I understand your offense at the general statement about black and white thinking, since you don't believe it applies to you, but couldn't help myself but to interject, when you countered Tambourine's statement that no one can speak for all autistic people.
I already explained why Tambourine man had no reason to claim that autistics all thought in black and white because that's the inference.
aghogday wrote:
Some cannot drive, because of sensory issues, but fortunately it is not a problem that the legal system or medical profession has generalized out to everyone diagnosed with Autism, where everyone loses their license, as in the hypothetical example above.
There are probably hundreds of more examples, but I think one can safely state that no one can speak for all autistic people.
There are probably hundreds of more examples, but I think one can safely state that no one can speak for all autistic people.
Yes they can. Even your example highlights my point. The issue is that first one should not discount what somebody says on account of a trait. That's ad hominem. It's a fallacy of logic that is beyond infuriating. Second, the issue is that people can talk about all of us as long as two conditions are fulfilled:
One: That autism isn't a false construction.
Two: That the point one is making is true.
We aren't disputing the first one, here at least. The second one however is violated by the term black-and-white as applied to self-advocates on account of autistics always thinking in black-and-white despite the fact that it isn't true that all of them do..
25 Oct 2011, 4:08 pm
aghogday wrote:
vermontsavant wrote:
@aghogday i think what you are talking about is semantic pragmatic disorder(a non verbal leaning disability).i didnt realize they merged that with pdd-nos
I was incorrect in stating Social communication disorder was replacing pedantic language disorder, I remembered it incorrectly and will edit my post. Social communication disorder is a brand new disorder proposed for the DSMV that is not being merged with PDD NOS.
To be honest that's the problem when you do everything by symptoms and not causes. Everything gets mized up and it becomes an unrememberable mess that relies on concrete-looking but half-guessed diagnoses.
25 Oct 2011, 4:10 pm
Gedrene wrote:
androbot2084 wrote:
The movie Rainman sucks. It portrays neurotypicals as the cool guys and autistics as these idiot savants. Why can't the autistic be the cool guy?
Rainman doesn't even have an autistic guy in it. They found out that the diagnosis of the man who rainman was based on wasn't even autistic. It just goes to show how much the diagnostic system is near to a sham.
That's a common misconception.
It's interesting that while Kim Peek had savant syndrome, and an autopsy revealed that there was no connection between the left and right hemispheres of his brain, which is a defect not specific to autism, the actual character rainman in the movie was considered an accurate portrayal of an autistic person with prodigious savant skills. Indeed rare, in general, only 10% of autistic individuals have savant abilities, and most of the time it is not the prodigious type, that was portrayed in the character Charlie Babbit in the movie rainman.
While Kim Peek was used as an inspiration in the movie for savant skills another individual that Dustin Hoffman came to know, Joesph Sullivan an autistic savant, and yet another another individual with autism that remained unamed along with their brother, were used as inspirations for the movie.
Here is a link and an excerpt from the wisconsin medical society to a recent article that details the background of the movie. It's very interesting, there is alot of information there I was not aware of, regarding the movie "Rainman."
http://www.wisconsinmedicalsociety.org/savant_syndrome/savant_articles/rain_man
Quote:
The first version of Rain Man was written by Barry Morrow who had earlier written the original story for the award-winning TV movie Bill, in which Mickey Rooney played a mentally ret*d person. The Rain Man script was inspired by another mentally handicapped young man —Kim Peek — whom Morrow had come to know in Salt Lake City, and who had striking savant skills as described elsewhere on this Web site. Morrow sent the story on to Hollywood. When the script ultimately reached Dustin Hoffmann's agent, he sent it to Hoffman with the idea that Hoffman play the part of the younger brother, Charlie Babbitt. But Dustin Hoffman had seen the 60 Minutes piece on Leslie Lemke done in October 1983 and was very moved by it — "moved to tears," he states, in fact. He wanted to play the part of the savant, not the brother. Tom Cruise was cast as the savant's younger brother. It turned out to be a splendid bit of casting.
It was this October 25, 1986, draft of Rain Man, which was the initial one sent to me for my reaction and comment because of my interest and involvement with Savant Syndrome. The producer was interested then, and remained so throughout the movie's production, that the story remain accurate, authentic and credible. In that the studio succeeded.
That October 1986 version of the script was very different from the finished product. First of all, that early version had Raymond Babbitt's mental handicap as mental deficiency rather than autism. A variety of persons, especially Dustin Hoffman, felt that the portrayal of an autistic person, with all the typical associated rituals, obsessiveness, resistance to change and relatively affectionless behaviors might make a more interesting character for Raymond Babbitt, one the public had never really been exposed to on screen. Also, autism would create an opportunity for a more complex interaction between the two brothers. That, of course, was a crucial and significant change and as it turned out, a very successful one. However it required a major rewrite of the script changing from the real-life savant model, Kim, whom Morrow had written about to a new, composite character. The savant skills remained but the basic disability was an entirely different one, now autism, with all of its distinctive, difficult and demanding characteristics and features.
A second crucial change was in restoring and maintaining an authenticity and believability of the story line. That 1986 script was, to me, much more of what I had feared Hollywood might do in attempting to portray savant syndrome — embellish and exaggerate to a point of unbelievability. Savant Syndrome is spectacular in its own right; it does not need to be embellished. But that first script had in it more typical Hollywood scenes — Mafia mobsters, narrow escapes and a chase scene in which Charlie and Raymond roar out of a burning barn on a motorcycle and sidecar fashioned by using some of Raymond's savant mechanical skills. Scenes such as that fortunately gave way to more credible episodes in the final script.
A third crucial change was the ending. In the original script there was a "happy ending." Raymond has changed so much that he does not return to the institution. He moves in with his brother, they go to ball games together and live happily ever after. While that makes a nice story, it also is an unrealistic one. The final script ending is as it should be. Raymond has changed slightly, some tentative closeness has emerged and one senses the beginnings of a transition, perhaps someday, to a life outside the hospital. It is a hopeful ending, but a realistic one, for all that one could expect in that six-day encounter is some new hope, not an accomplished cure.
It was this October 25, 1986, draft of Rain Man, which was the initial one sent to me for my reaction and comment because of my interest and involvement with Savant Syndrome. The producer was interested then, and remained so throughout the movie's production, that the story remain accurate, authentic and credible. In that the studio succeeded.
That October 1986 version of the script was very different from the finished product. First of all, that early version had Raymond Babbitt's mental handicap as mental deficiency rather than autism. A variety of persons, especially Dustin Hoffman, felt that the portrayal of an autistic person, with all the typical associated rituals, obsessiveness, resistance to change and relatively affectionless behaviors might make a more interesting character for Raymond Babbitt, one the public had never really been exposed to on screen. Also, autism would create an opportunity for a more complex interaction between the two brothers. That, of course, was a crucial and significant change and as it turned out, a very successful one. However it required a major rewrite of the script changing from the real-life savant model, Kim, whom Morrow had written about to a new, composite character. The savant skills remained but the basic disability was an entirely different one, now autism, with all of its distinctive, difficult and demanding characteristics and features.
A second crucial change was in restoring and maintaining an authenticity and believability of the story line. That 1986 script was, to me, much more of what I had feared Hollywood might do in attempting to portray savant syndrome — embellish and exaggerate to a point of unbelievability. Savant Syndrome is spectacular in its own right; it does not need to be embellished. But that first script had in it more typical Hollywood scenes — Mafia mobsters, narrow escapes and a chase scene in which Charlie and Raymond roar out of a burning barn on a motorcycle and sidecar fashioned by using some of Raymond's savant mechanical skills. Scenes such as that fortunately gave way to more credible episodes in the final script.
A third crucial change was the ending. In the original script there was a "happy ending." Raymond has changed so much that he does not return to the institution. He moves in with his brother, they go to ball games together and live happily ever after. While that makes a nice story, it also is an unrealistic one. The final script ending is as it should be. Raymond has changed slightly, some tentative closeness has emerged and one senses the beginnings of a transition, perhaps someday, to a life outside the hospital. It is a hopeful ending, but a realistic one, for all that one could expect in that six-day encounter is some new hope, not an accomplished cure.
Quote:
Dustin Hoffman was carefully doing his homework for the part he very much wanted to do. He watched hours of tapes and movies of savants, both autistic and ret*d. He studied scientific papers and manuscripts, talked to various professionals, visited psychiatric facilities and spent time with savants and their families to experience those relationships firsthand. There were three individuals Dustin Hoffman met and studied in depth. One was Kim Peek who is described elsewhere on this Web site. Another was an autistic savant and his brother (just as in the movie) who prefer to remain anonymous. He spent a great deal of time with them in their typical family activities.
The other autistic savant Dustin Hoffman got to know well was Joseph Sullivan who lives in Huntington, West Virginia along with his parents, Drs. Ruth and William Sullivan. There had been two excellent documentaries filmed about Joseph, a 1967 film called The Invisible Wall and a 1986 film entitled Portrait of an Autistic Young Man. Both were projects of the UCLA Behavioral Sciences Media Laboratory. Dustin Hoffman carefully studied not only the films themselves, but also some sixteen hours of outtakes from the 1986 production. Therein he was able to get a very in-depth look at a most impressive young man and his family
The other autistic savant Dustin Hoffman got to know well was Joseph Sullivan who lives in Huntington, West Virginia along with his parents, Drs. Ruth and William Sullivan. There had been two excellent documentaries filmed about Joseph, a 1967 film called The Invisible Wall and a 1986 film entitled Portrait of an Autistic Young Man. Both were projects of the UCLA Behavioral Sciences Media Laboratory. Dustin Hoffman carefully studied not only the films themselves, but also some sixteen hours of outtakes from the 1986 production. Therein he was able to get a very in-depth look at a most impressive young man and his family
25 Oct 2011, 4:20 pm
aghogday wrote:
Gedrene wrote:
androbot2084 wrote:
The movie Rainman sucks. It portrays neurotypicals as the cool guys and autistics as these idiot savants. Why can't the autistic be the cool guy?
Rainman doesn't even have an autistic guy in it. They found out that the diagnosis of the man who rainman was based on wasn't even autistic. It just goes to show how much the diagnostic system is near to a sham.
That's a common misconception.
It's a common misconception that Rain man was autistic despite the fact that Kim Peek was the main basis behind the character and he was not autistic. The other man who was involved in the characterization. was a man called Bill Sackter. You forgot Bill Sackter.
To further illustrate:
Quote:
Dustin Hoffman was carefully doing his homework for the part he very much wanted to do. He watched hours of tapes and movies of savants, both autistic and ret*d.
So despite what Hoffman and so forth intended to portray what they actually ended up portraying was a composite of two characters with savant skills and what they knew about autism. To this day it has become more and more clear that only a small minority of autistics have savant skills. Specific interests are common, but as for savant skills, say being able to instantly calculate a thousand different square roots instantaneously, this is rare and today it seen as being more common to other syndromes.
Since the 80's the autism diagnosis has since evolved beyond what was known and thought then and for good reason. it is clear that Autism itself is an ever-changing diagnosis and one that is becoming toa large extent more tenuous as it becomes clear that there are actual distinct groups in this 'autism' label.
Rain Man is a reflection of an older time when people had less of a clue. Furthermore it is hollywood, and a version of hollywood which is not true but makes only for good watching.
25 Oct 2011, 4:29 pm
Gedrene wrote:
aghogday wrote:
Hypothetical analagous example:
There is a classification of a disorder for individuals with the inherent characteristic of yawning alot.
There is a classification of a disorder for individuals with the inherent characteristic of yawning alot.
And there is where your analogy falls apart because you said so yourself that black and white thinking is not true with me so it is not inherent because it doesn't refer to all and if it were inherent then lacking it would mean someone didn't have autism, despite the fact that you and I have already said that black-and-white thinking is not inherent in autistics.
aghogday wrote:
There are self-advocates that are reasonable and listen to evidenced based data to form opinions, and there are some that will not budge from an opinion no matter how much evidence is presented to counter that opinion. There is evidence of it in the record.
Yes but Tambourine did not make that definition himself and the point was that apparently this autism was making self-advocates think in black and white when they don't.
aghogday wrote:
Tambourine Man presented the statement that the problem with self-advocacy is black and white thinking, which is part and parcel of autism.
No, it isn't part and parcel with autism. In fact you said so yourself because you said I don't think in black and white and even then you said it was common, not integral like you are now claiming.
aghogday wrote:
It's really not much of a stretch to think that black and white thinking could impact the arguments over this that have created problems.
And that is exactly my point. You spell it out for me yourself. You say it affects their argument and that's exactly what I was arguing against because not only is it an ad hominem insult that doesn't actually disprove their arguments but it also shows that people are willing to lie, yes lie, about self-advocates when they say that all autistics think in black and white when they don't, and you admitted that I don't and that it is 'common', thus not integral, thus not part-and-parcel.
aghogday wrote:
There have been people that continue to state the organization does absolutely no good for autistic people, regardless of any objective evidence presented to refute that statement.
No evidence? There has been evidence that unverifiably proves that they are willing to intimidate teenages with lawsuits for making parodies of them, never mind also not be helpful, of which there is clear evidence that they have not been helpful. And so far I have no evidence that Autism Speaks has changed its tack but I was willing to be open for a while. Don't think you can play dumb with me Aghogday. I have picked apart people who didn't try to be nice to Autism Speaks on this very forum, so don't think I'll let you daub me, a self-advocate, with discriminatory attacks of thinking in black and white terms.
aghogday wrote:
There are many gray areas, though, that can be interpreted in different ways. I understand your offense at the general statement about black and white thinking, since you don't believe it applies to you, but couldn't help myself but to interject, when you countered Tambourine's statement that no one can speak for all autistic people.
I already explained why Tambourine man had no reason to claim that autistics all thought in black and white because that's the inference.
aghogday wrote:
Some cannot drive, because of sensory issues, but fortunately it is not a problem that the legal system or medical profession has generalized out to everyone diagnosed with Autism, where everyone loses their license, as in the hypothetical example above.
There are probably hundreds of more examples, but I think one can safely state that no one can speak for all autistic people.
There are probably hundreds of more examples, but I think one can safely state that no one can speak for all autistic people.
Yes they can. Even your example highlights my point. The issue is that first one should not discount what somebody says on account of a trait. That's ad hominem. It's a fallacy of logic that is beyond infuriating. Second, the issue is that people can talk about all of us as long as two conditions are fulfilled:
One: That autism isn't a false construction.
Two: That the point one is making is true.
We aren't disputing the first one, here at least. The second one however is violated by the term black-and-white as applied to self-advocates on account of autistics always thinking in black-and-white despite the fact that it isn't true that all of them do..
Bud, I never said ALL autistics think in black and white. That accusation is a perfect example of black and white thinking.
When you interpret "The problem with self-advocacy is the black and white thinking" to mean "the problem with self-advocacy is that ALL autistics think in black and white" you are displaying a polarized understanding.
It isn't all or nothing. It isn't black or white.
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
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25 Oct 2011, 4:35 pm
aghogday wrote:
vermontsavant wrote:
@aghogday so are you saying there going to invent a new disorder to compensate for diagnostic overflow
The DSMV diagnostic criteria is changing. Repetitive Behaviors and Stereotypical interests is an element that can currently be excluded in the diagnosis of PDD NOS using the DSMIV, so there are some with a diagnosis of PDD NOS, that do not meet this particular criteria.
In the DSMV at this point in the proposed revision Repetitive Behaviors And Stereotypical interests is a requirement for all diagnoses.
The social communication disorder at this time is a new disorder criteria that has been added in. There has been speculation that some that might have received a diagnosis of PDD NOS in the DSMIV may now instead receive a diagnosis of social communication disorder, because they don't meet the Repetitive Behavior and stereotypical interest requirement.
I saw one study that indicated that the majority of people with PDD NOS do not meet that required criteria, but it was a limited study.
It is all speculation at this point, because the final revision of the DSMV has not been approved.
This is worse. PDD NOS Speaks does not meet the Autism criteria, were just used to pump up the numbers, leaving Autism, Asperger's, HFA at 10% of their own disability, now over run with non autistic, while it is true that PDD NOS does cover a lot of lifetime disabled. Lowered our scores, fudged the data.
This reminds me of African tribes who were suddenly not members of their tribe, but now with parts of four other tribes, British Rhoadisians.
Our tribal borders have not moved, these other people are not autistic, so planning for what to do with PDD NOS does not apply to us.
We are not eight, we do not follow blindly, we question.
PDD NOS was thrown in the Autism bin where the money was. Autism became a catchall Dx.
If money is raised for Autism Research, and spent on PDD NOS, that lacks truth in advertising.
Autism existed, and was not in special education. Our traits often make us very good students.
This is like including heart attacks and teen pregnacy together, because they are both medical problems.
Treatment for the now majority, PDD NOS is not what Autism needs, even if some outsiders drew some lines on paper.
Now there is talk of even more lines. Some erected, others removed, to break up the tribes forming their own base of power.
So there will be money for PDD NOS, and someone is fishing with a big net. Now we will be PDD NOS with symptoms that used to be known as Autism?
This is not what parents gave money for, it is not what autistics want, call us picky, narrow interest, but our subject is Autism.
I can see where adding PDD NOS has changed the numbers. Not one in a hundred, but three in 1,000? 150,000 Asperger's and HFA, making up a tiny fraction of the mass class, ASD, PDD NOS.
PDD NOS is a real problem, should get what it needs, but it is not Autism.
Perhaps this is why Autism has been disagreeing? We have been invaded and lumped with those who used to just be called ret*d? The American Sociaty for ret*d Citizens changed their name a year or two back, PDD NOS sounds Politically Correct.
As there was already a group dedicated to what PDD NOS was called, someone claimed it was all Autism?
Media, Politics, Fund Raising, but the parents of Autistics did not know they were donating for a Corporate play on PDD NOS. What next, Depression being called an ASD? That would bump up the numbers.
Autism is Autism, now only 10% of Autism, 150,000, 1,500 per State, and is mostly Asperger's, HFA, and is very treatable. Someone took the money, traveled worldwide, and researched PDD NOS.
Creating a Media Epidemic, saying Autism while meaning PDD NOS, doing nothing for the 150,000, they raised a lot of money off of, doing some empire building does seem to break the Truth in Advertising Laws.
Anyone who did this in Science, would be accused of producing false data, like the Vaccine Study. He was paid by lawyers to produce results, and did. No one could replicate his work, he was dumped.
Autism Speaks spends more than 70% of their effort calling something else Autism. This view, All ret*ds are Alike, might be the problem.
If they were properly named, ret*ds Speak, I would not have a problem with it.
I do have a narrow view, Autism includes HFA, Asperger's, and disabling Autism. This is from a long standing medical and scientific criteria for Autism, which has not changed.
A Charity Corporation, Psychobbale, are making a play on Government funding, by Lobbying their friends in Washington. It is not about Autism, it is about money.
So of course they have shouted down and banned anyone who had another view of what Autism was.
I will accept aghogdays numbers, actual DX, Autism makes up 150,000 out of 1.5 Million ASD. I agree with the 150,000, but not that the rest should be called ASD. Those with the symtoms, who meet the criteria, are Autistic, the rest do not, are not.
The Autism Epidemic has just been reduced by 90%.
Funding for Autism seems ample to give some serious aid to the Autistic.
The only problem I see is who's pocket the Autism Funding goes in.
It is not being spent on Autism, but on growing the Corporate Franchise and Autism has been Trademarked as a Brand Name.
As for researching what to do with 400,000 PDD NOS, that is not a new problem, it is a function of Government. Most are supported through SSI.
I doubt that anyone can show 400,000 in Group Homes and Instituions.
That number is only a part of the one in a hundred claim, three million.
More related to the 1.5 million claim.
So 1/6 of PDD NOS needs lifetime economic support through SSI, and we are doing it, and have been for decades. Most need no other support.
Actual numbers of people in Group Homes and Institutions should not be hard to find, the Government pays for it.
Of them, some percentage do fall under PDD NOS, and dropping ASD, Some do fit Autism. Most I think fall into other groups.
As a long standing function of Government, the percentage breakdown, cost per person, is known.
Cards on the table. How many get by on their own, how many on SSI, with a breakdown of PDD NOS, Autism alone, and how many need Group Homes, Institutions. Also broken down for PDD NOS and Autism.
Those in Institutions are getting the most costly care, Group Homes cost less. SSI is less than a Tax Break for the upper Middle Class, $10,000 a year.
Those in Institutions are not likely to be helped. That is why they are there. Those living in Group Homes can transition to living on their own at less cost. Those living on SSI are worth helping, for they could transition from being minus $10,000, to being a somewhat taxable citizen.
Those just getting by on their own seem to need dating advice, to be told obvious things about employment, where Mentors can make all the differance.
I do not see the problem, the Government funds it all. As a percentage of National Costs, one that is never going away, it is maybe around one new fighter plane.
Where added effort could work starts in Group Homes, designing them to prepare people to live on their own, not for Corporate Warehouse Profits.
Those on SSI need some targeted education, beyond Wrong Planet, on getting into life. Just working your local food bank one day a week would change your life. I have met a fair number through Goodwill, who work half time to full time. Goodwill tells me they are always hiring, it is a good place to work. Many have gone on to regular employment.
At 1500 per State, I think Goodwill would take them all. They deal with work, do cut people some slack.
Something more directed at Autism, is needed. Shrinks and groups are not meeting needs. Professionals and parents are not us, we need us.
Altogether I do not see any problem that is not being dealt with.
One problem stands out, in New York, that parties on the Autism money, and spends it on research into other conditions they can grow their market into. This constant far future view of someday a Cure, has never produced for us. Like Ruvyan says about Fusion, it is fifty years in the future, and always will be.
Considering Tamborine Man, funded by Autism Speaks, I think Ari is too.
"Nothing about them without us."
No thanks to the imposed leadership, no thanks to the Awareness, we self identify, are democratic, and we would like you to quit using our good name to drag through the mud of Marketing and Media.
You chose PDD NOS, let that be your banner, all you wanted from us was our name and the money.
25 Oct 2011, 6:28 pm
Surfman wrote:
They should spend some of their money on teaching aspies to be brief
Ha ha. Awesome!
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
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25 Oct 2011, 7:58 pm
Gedrene wrote:
aghogday wrote:
Hypothetical analagous example:
There is a classification of a disorder for individuals with the inherent characteristic of yawning alot.
There is a classification of a disorder for individuals with the inherent characteristic of yawning alot.
And there is where your analogy falls apart because you said so yourself that black and white thinking is not true with me so it is not inherent because it doesn't refer to all and if it were inherent then lacking it would mean someone didn't have autism, despite the fact that you and I have already said that black-and-white thinking is not inherent in autistics.
aghogday wrote:
There are self-advocates that are reasonable and listen to evidenced based data to form opinions, and there are some that will not budge from an opinion no matter how much evidence is presented to counter that opinion. There is evidence of it in the record.
Yes but Tambourine did not make that definition himself and the point was that apparently this autism was making self-advocates think in black and white when they don't.
aghogday wrote:
Tambourine Man presented the statement that the problem with self-advocacy is black and white thinking, which is part and parcel of autism.
No, it isn't part and parcel with autism. In fact you said so yourself because you said I don't think in black and white and even then you said it was common, not integral like you are now claiming.
aghogday wrote:
It's really not much of a stretch to think that black and white thinking could impact the arguments over this that have created problems.
And that is exactly my point. You spell it out for me yourself. You say it affects their argument and that's exactly what I was arguing against because not only is it an ad hominem insult that doesn't actually disprove their arguments but it also shows that people are willing to lie, yes lie, about self-advocates when they say that all autistics think in black and white when they don't, and you admitted that I don't and that it is 'common', thus not integral, thus not part-and-parcel.
aghogday wrote:
There have been people that continue to state the organization does absolutely no good for autistic people, regardless of any objective evidence presented to refute that statement.
No evidence? There has been evidence that unverifiably proves that they are willing to intimidate teenages with lawsuits for making parodies of them, never mind also not be helpful, of which there is clear evidence that they have not been helpful. And so far I have no evidence that Autism Speaks has changed its tack but I was willing to be open for a while. Don't think you can play dumb with me Aghogday. I have picked apart people who didn't try to be nice to Autism Speaks on this very forum, so don't think I'll let you daub me, a self-advocate, with discriminatory attacks of thinking in black and white terms.
aghogday wrote:
There are many gray areas, though, that can be interpreted in different ways. I understand your offense at the general statement about black and white thinking, since you don't believe it applies to you, but couldn't help myself but to interject, when you countered Tambourine's statement that no one can speak for all autistic people.
I already explained why Tambourine man had no reason to claim that autistics all thought in black and white because that's the inference.
aghogday wrote:
Some cannot drive, because of sensory issues, but fortunately it is not a problem that the legal system or medical profession has generalized out to everyone diagnosed with Autism, where everyone loses their license, as in the hypothetical example above.
There are probably hundreds of more examples, but I think one can safely state that no one can speak for all autistic people.
There are probably hundreds of more examples, but I think one can safely state that no one can speak for all autistic people.
Yes they can. Even your example highlights my point. The issue is that first one should not discount what somebody says on account of a trait. That's ad hominem. It's a fallacy of logic that is beyond infuriating. Second, the issue is that people can talk about all of us as long as two conditions are fulfilled:
One: That autism isn't a false construction.
Two: That the point one is making is true.
We aren't disputing the first one, here at least. The second one however is violated by the term black-and-white as applied to self-advocates on account of autistics always thinking in black-and-white despite the fact that it isn't true that all of them do..
I'm not sure what you mean by speaking for all autistic people.
If it is anything that can be true like they consume calories or that they are human, that's obvious.
But from the context of Autism Speaks and what it is that autistic people need by speaking for them. No one individual understands and can speak for the individual needs of millions of diagnosed autistic people, or if research is correct, the potential billions of individuals with autistic traits, of which many will never identify with.
There are 2440 non-profit organizations, just in the US, that deal with the needs of approx. 1.5 million reported diagnosed cases of autism, according to a non-profit watchdog group guidestar. The complexity of those needs are more than any individual could come close to understanding.
We can make generalizations about the disorder autism, since clinically deficits of abstract reasoning are seen as an integral part of the disorder, but on an individual level, some can't even communicate, so I personally wonder how clinicians can know for sure, this is the case with these individuals.
As per example, it is a scientific view from clinical research that deficits in abstract reasoning, the scientific phrase which includes a propensity towards black and white thinking, is integral or the foundation of the symptoms of ASD's.
My understanding is that you have not been diagnosed in a clinical setting, so a deficit in abstract reasoning may not necessarily apply to you; they would be the ones to make that judgement, not me, on a professional level.
From what I have seen on this website there are some folks that think in very abstract terms, so I suspect it is more complicated than the common view that the clinicians have expressed on integral deficits in abstract reasoning among autistics. Deficits in abstract reasoning is obviously a common phenomenon among autistic people, though.
Remember Ci? Some people questioning the possibility of whether he could be autistic, because of the abundance of metaphors (indicative of abstract reasoning) he used in conversation. However there is public evidence that he is autistic.
Regardless of what I personally think, if you say you don't have black and white thinking/deficits in abstract thinking, I am in no position to try to convince you of it. I never stated you did not have it, I stated you don't necessarily have it, and accept your statement that you don't think you have this tendency.
The idiom part and parcel that means integral to, is not one I would of used, nor would I personally state that deficits in abstract reasoning is integral to autism, based on my personal opinion, but it is a view that some hold as valid within the scientific community. As far as I know there is no current research that refutes this view.
I suspect it's not true in all cases but that doesn't prove anything, because I haven't done the research to back it up; on the other hand I have seen it stated in the scientific literature that concrete thinking/deficits in abstract reasoning is the foundation of the symptoms of ASD's.
http://www.wpic.pitt.edu/research/CeFAR/PDF/UpdateOnNeurocognitiv.pdf
Quote:
In sum, studies to date indicate that the two disorders are relatively indistinguishable on the basis of cognitive measures, with a few minor exceptions, which may be attributable to diagnostic severity
in one or another domain. In addition, it seems that individuals with AS occasionally perform better on tasks assessing theory of mind and abstract reasoning—to the extent that these skills have been compared systematically. And yet, this better performance can easily be attributed to higher intellectual ability and verbal compensatory strategies. Both AS and HFA appear to share metarepresentational, abstract reasoning, and nonverbal communication difficulties that are providing the foundations for a cognitive explanation of the symptom profile in ASD.
in one or another domain. In addition, it seems that individuals with AS occasionally perform better on tasks assessing theory of mind and abstract reasoning—to the extent that these skills have been compared systematically. And yet, this better performance can easily be attributed to higher intellectual ability and verbal compensatory strategies. Both AS and HFA appear to share metarepresentational, abstract reasoning, and nonverbal communication difficulties that are providing the foundations for a cognitive explanation of the symptom profile in ASD.
The deficits in abstract reasoning, are suggested to vary among individuals, depending on intellectual and verbal compensatory strategies. Some people have a harder time with black and white thinking than others do.
Considering the available scientific literature, Tambourine Man's part and parcel of autism is agreed upon by some in the scientific community, the degree of how one is affected, is what makes individuals different within the spectrum. It's no lie it is a common understanding for some based on studies. Is it correct? I doubt it, but I can't prove it at this point.
Whether or not all autistic people have deficits in abstract reasoning/black and white concrete thinking, does not mean that they all experience it to the same degree or it presents a significant social problem in every case.
I think it's obvious that not everyone is paralyzed by this problem of deficits in abstract reasoning/black and white thinking, including advocates, it does cause problems in social interaction for some, but not all.
For review here:
Aghogday wrote:
Quote:
There have been people that continue to state the organization does absolutely no good for autistic people, regardless of any objective evidence presented to refute that statement.
Gedrene wrote:
Quote:
No evidence? There has been evidence that unverifiably proves that they are willing to intimidate teenages with lawsuits for making parodies of them, never mind also not be helpful, of which there is clear evidence that they have not been helpful. And so far I have no evidence that Autism Speaks has changed its tack but I was willing to be open for a while. Don't think you can play dumb with me Aghogday. I have picked apart people who didn't try to be nice to Autism Speaks on this very forum, so don't think I'll let you daub me, a self-advocate, with discriminatory attacks of thinking in black and white terms.
I've stated many times before that autism speaks has made mistakes.
You appear to be misreading my statement as quoted. I stated: There have been people that continue to state the organization does absolutely no good for autistic people, regardless of any objective evidence presented to refute that statement.
These are the people that will not admit that Autistic people does anything whatsoever that is good for autistic people, that is indicative of black and white thinking. They provide 1.5 million in grants to individuals with autism; that is irrefutable evidence that they do at least something good for some autistic people.
It has been presented here before and people have refused to acknowledge it as a positive action by the organization, because for them everything about the organization has to be negative. That is indeed representative of black and white thinking, that is not likely to lead to any level of a middle ground on the topic of Autism Speaks.
There are different opinions here based on different studies, anecdotal experience, and generalizations that are commonly heard.
There is a level of truth in what Tambourine said about black and white thinking that can be backed up by the record, but on the other hand the record shows that some advocates, even if they have deficits in abstract reasoning, have the ability to see gray areas on subjects, based on credible evidence.
He was part of that conversation, so it's likely that he understands that there were advocates that could see the gray areas, regardless of whether or not they had deficits in abstract thinking.
Does it mean they are not affected by black and white thinking? No. It means that if they have an issue with it, it is not causing a problem severe enough to prevent them from seeing the gray areas, as they become evidenced, whereas it can present a problem for others to see gray areas, as evidence is presented.
Black and White thinking has been evidenced here and acknowledged to create difficulties in communications on subjects that vary from A to Z. If someone gives someone irrefutable evidence on something, that threatens to change their view, and they refuse to acknowledge it, it's a good sign that they have difficulty seeing and accepting the gray areas in life.
It's not always a problem but it is more evident among individuals that share deficits in abstract reasoning.
If one suggested that black and white thinking wasn't a problem for people with autism, I doubt they would get many people to agree with them, that have spent any time around a number of autistic people.
I'm not afraid to admit I am affected by black and white thinking, deficits in abstract thinking, it is part of what has always made me different.
I've gotten used to it. I'm not seeing it as an attack for someone to tell me I do it, because I know I do it, and at least in my case it is genetic, not something I suddenly decided to do at one point or another by intention.
Twice now in conversations we have been in you've refuted the idea that Rainman was autistic because his character is based on Kim Peek who is not autistic.
Twice now I provided evidence that Dustin Hoffman used him to study prodigious savantism, and used two other individuals that were autistic savants to study the autistic symptoms that he displayed in the movie, and also that the portrayal of an autistic savant with prodigious abilities is an accurate one stated by knowledgeable individuals in the field, as stated in the evidence I provided.
Will you accept the evidence, and acknowledge that Dustin Hoffman used two autistic savants to study and portray the symptoms of autism he displayed in the movie?
I've acknowledged that I personally don't agree that every autistic person has significant deficits in abstract reasoning, based on my anecdotal experience.
At the same time I understand that people have other views that it is the foundation of autistic symptoms from review of the scientific literature. There is a gray area there than I can acknowledge
If you don't think Dustin Hoffman did a good job in the movie, that's cool that's a gray area, but can you acknowledge that Kim Peek wasn't his role model for autism, now that I have provided evidence of the two individuals that were actually autistic savants that were his role models?
I haven't checked that post in awhile so if you already acknowledged it forgive me for asking if you will.
25 Oct 2011, 9:03 pm
Examples of black and white thinking...
- Mary told a lie, therefore Mary is a liar, and nothing she says can be trusted.
- Bob complimented my tie, therefore Bob is a nice person who would never criticize anyone.
- Michael overdosed on pain pills, therefore all pain pills are dangerous for everyone and no one should ever take them.
- George told me that my haircut looked bad, therefore George is a rude and terrible person who never says anything nice.
- Autism Speaks has made some poor choices that offended me, therefore Autism Speaks is evil and does nothing but evil things all the time and will always do nothing but evil things.
- Autism Speaks funds genetic research. I've heard genetic research could lead to a pre-natal test. A pre-natal test will give parents the ability to abort autistic children, therefore a pre-natal test would result in the genocide of all autistic people. If Autism Speaks is funding genetic research, they must be looking for a pre-natal test, therefore Autism Speaks is a group of Nazis and wants to eliminate all autistic people. Tambourine-Man writes blogs for Autism Speaks, therefore Tambourine-Man is a Nazi sympathizer who wants all autistics to be dead.
- Tambourine-Man uses metaphors. I've heard autistics can't use metaphors, therefore TM is not actually autistic.
- Tambourine-Man does not hate Autism Speaks, therefore he must love Autism Speaks and approve of everything they do.
- Tambourine-Man said black and white thinking influences autistic self-advocacy, therefore Tambourine-Man thinks that all self-advocates think in black and white. This means Tambourine-Man hates self-advocacy and loves Autism Speaks.
- I'm autistic. I'm happy just how I am and don't need any fancy treatments, therefore all genetic research is a waste because all autistics are happy just the way they are.
---
This kind of thinking IS recognized by the medical community as symptomatic of autism (once again, that does not mean that the medical community thinks all autistics are this way).
Think about these examples of black and white thinking...
- I met an autistic person once. You say you're autistic, but you don't act like the autistic person I met before, therefore you are liyng about being autistic.
- Autism is a disease, and all autistic people are miserable, therefore all autistic people must be cured in order to be happy.
Sound familiar? Compare these last two examples to this one from earlier...
- I'm autistic. I'm happy just how I am and don't need any fancy treatments, therefore all genetic research is a waste because all autistics are happy just the way they are.
Notice any similarities?
So, has black and white thinking offended you? Do you see how it could offend others and be counterproductive to self-advocacy?
_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
http://www.facebook.com/pages/JohnScott ... 8723228267
Last edited by Tambourine-Man on 25 Oct 2011, 9:37 pm, edited 3 times in total.
25 Oct 2011, 9:27 pm
Inventor wrote:
aghogday wrote:
vermontsavant wrote:
@aghogday so are you saying there going to invent a new disorder to compensate for diagnostic overflow
The DSMV diagnostic criteria is changing. Repetitive Behaviors and Stereotypical interests is an element that can currently be excluded in the diagnosis of PDD NOS using the DSMIV, so there are some with a diagnosis of PDD NOS, that do not meet this particular criteria.
In the DSMV at this point in the proposed revision Repetitive Behaviors And Stereotypical interests is a requirement for all diagnoses.
The social communication disorder at this time is a new disorder criteria that has been added in. There has been speculation that some that might have received a diagnosis of PDD NOS in the DSMIV may now instead receive a diagnosis of social communication disorder, because they don't meet the Repetitive Behavior and stereotypical interest requirement.
I saw one study that indicated that the majority of people with PDD NOS do not meet that required criteria, but it was a limited study.
It is all speculation at this point, because the final revision of the DSMV has not been approved.
This is worse. PDD NOS Speaks does not meet the Autism criteria, were just used to pump up the numbers, leaving Autism, Asperger's, HFA at 10% of their own disability, now over run with non autistic, while it is true that PDD NOS does cover a lot of lifetime disabled. Lowered our scores, fudged the data.
It was actually worse when the DSMIV first came out. Only one of the three major characteristics of autism were required at PDD NOS that time, because of an editorial mistake. A person could get a diagnosis of PDD NOS with no problems with social interaction or communication. Amazing it took them 6 years to figure out it had broadened the number of cases under the PDDNOS criteria:
http://www.psych.org/MainMenu/Research/DSMIV/DSMIVTR/DSMIVvsDSMIVTR/SummaryofPracticeRelevantChangestotheDSMIVTR/PDDNOS.aspx
Quote:
Major changes were made the PDD category in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) based, in part, on a large, multi-site, international field trial. However, an editorial change was made in the description of PDDNOS during the final phase of production that had an unintended effect on the definition of PDDNOS. Instead of requiring “impairment in social interaction and in verbal or nonverbal communication skills” (DSM-III-R, p. 39), DSM-IV states that the “category should be used where there is a severe and pervasive impairment of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present” (DSM-IV, pp. 77-78). Thus, a child with an impairment in only one area (e.g., a child with stereotyped behavior, interests and activities but without evidence of disturbed social interactions could theoretically qualify for a diagnosis of PDDNOS.
To assess the impact of the DSM-IV wording, Volkmar and colleagues performed a series of reanalyses of the DSM-IV autism/PDD field trial data (Volkmar FR, Shaffer D, First M. PDD-NOS in DSM-IV. J Autism Dev Disord 2000 Feb;30(1):74-75). A series of comparisons were conducted to evaluate sensitivity/specificity. Using clinicians' judgment of the presence or absence of PDDNOS as the standard, the DSM-IV wording had an excellent sensitivity of .98. However, the specificity was only .26, i.e., about 75% of cases identified by the clinician as not having PDDNOS (true negatives), were incorrectly identified as having PDDNOS according to the DSM-IV. These results lend support to the concern that the DSM-IV wording inappropriately broadened the PDDNOS construct. If problems are required in the social area and either communication or restricted interest (i.e., at least 2 criteria present one of which must be from the social area) the sensitivity was .89 and specificity .56.
These results supported a change in the wording of PDDNOS to revert to the original construct.
To assess the impact of the DSM-IV wording, Volkmar and colleagues performed a series of reanalyses of the DSM-IV autism/PDD field trial data (Volkmar FR, Shaffer D, First M. PDD-NOS in DSM-IV. J Autism Dev Disord 2000 Feb;30(1):74-75). A series of comparisons were conducted to evaluate sensitivity/specificity. Using clinicians' judgment of the presence or absence of PDDNOS as the standard, the DSM-IV wording had an excellent sensitivity of .98. However, the specificity was only .26, i.e., about 75% of cases identified by the clinician as not having PDDNOS (true negatives), were incorrectly identified as having PDDNOS according to the DSM-IV. These results lend support to the concern that the DSM-IV wording inappropriately broadened the PDDNOS construct. If problems are required in the social area and either communication or restricted interest (i.e., at least 2 criteria present one of which must be from the social area) the sensitivity was .89 and specificity .56.
These results supported a change in the wording of PDDNOS to revert to the original construct.
Isn't that about when the epidemic started, in 1994? It appears that it could come to a swift end if the current DSMV is used to rediagnose individuals with PDD NOS. The statistics as low as they are for Aspergers, wouldn't have made a tremendous difference, but it appears this PDD NOS situation could. PDD NOS didn't even appear in the DSM until 1980 with the DSM III. That's outlined in the linked article as well.
It doesn't appear that too much has changed since the 60's except for the culture, new diagnostic categories, and screening methods, at least as far as diagnosed numbers go, and associated statistics.
The PDD NOS confusion, probably would make any real numbers almost impossible to determine, if one were to try to go back and figure it out.
Some people with PDD NOS will meet the new criteria, but all could not possibly meet it per current revision, if they are reassessed.
Maybe more people talked about this back in 2000 when the impact of the mistake was found, but this is the first I have heard of what appears to be a pretty significant 6 year mistake, in diagnoses.
I guess the diagnoses could have been brought up to standards by now, but I wonder, considering that they let a mistake go for 6 years.
It also makes me wonder now, if most of the current PDD NOS diagnoses will be consumed by the new DSMV diagnosis, without effort to re-diagnose.
Would depend on the individual professional doing the paperwork, I guess. Or if the government requires it within the school system.
26 Oct 2011, 4:16 am
Tambourine-Man wrote:
Bud, I never said ALL autistics think in black and white. That accusation is a perfect example of black and white thinking.
When you interpret "The problem with self-advocacy is the black and white thinking" to mean "the problem with self-advocacy is that ALL autistics think in black and white" you are displaying a polarized understanding.
It isn't all or nothing. It isn't black or white.
When you interpret "The problem with self-advocacy is the black and white thinking" to mean "the problem with self-advocacy is that ALL autistics think in black and white" you are displaying a polarized understanding.
It isn't all or nothing. It isn't black or white.
Okay, now I am actually just being outright insulted by you. Fantastic. It doesn't matter that you said specifically 'all autistics think in black and white,' because ironically that is actually thinking in black and white. I am talking about implications, which if you must understand is not black-and-white thinking. It's looking in to your words and interpreting it for what it is. Got a problem with that?
you said this:
Quote:
The problem with autism self-advocacy is the black and white thinking that comes part and parcel with an autism diagnosis.
Guess what? When you say that black and white thinking comes part and parcel with an autism diagnosis then you are saying that all autistics think in black and white. Or are you really trying to deny the fact of what you said? Did you say black and white is part and parcel of the diagnosis? We all know that is wrong. We also know that saying such a thing about self-advocates is just an ad hominem attack. I don't even mind people who think in black-and-white. But I do have a problem with people who lie about what they said and you said it was part-and-parcel, thus integral, thus a fabrication.
