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Fnord
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17 Jan 2016, 8:04 pm

National Public Radio (NPR) recently presented two programs on four families with autistic children.

Part One: Families Describe How They Felt Hearing About An Autism Diagnosis

Part Two: After The Diagnosis: How Families Experience Autism

NPR usually does a very good job of focusing on the reality of a situation, and these articles are no exception. Please read them and share your thoughts. Thank you.



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18 Jan 2016, 3:11 am

It was nice that in the second article linked an autistic person described her experience.

I hope in the future a diagnosis of Autism given to thier offspring won't automatically cause a reaction of grief and fear in most parents. One has to know the truth but this truth hurts and is something I have never gotten used to.


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Fnord
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18 Jan 2016, 9:57 am

People need to be educated about autism, and NPR seems to provide the most balanced reporting on the subject. However, certain conservative types seem to believe that NPR spouts only "Liberal, Right-Wing Propaganda", so it doubt that they will learn much.


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18 Jan 2016, 10:13 am

Fnord wrote:
People need to be educated about autism, and NPR seems to provide the most balanced reporting on the subject. However, certain conservative types seem to believe that NPR spouts only "Liberal, Right-Wing Propaganda", so it doubt that they will learn much.

It will take an autistic Reagan descendant for conservatives to embrace the idea.

What I want to know is why mainstream media is still locked on the idea that autism is only a child's condition. I have watched hundreds of hours of video presentations, and read hundreds of research papers about autistic children, but none of them apply to me except in the most remote, distant-past ways. NPR's attempt to remain relevant failed in this case (regardless of the production quality) speaks for itself, not us. "Next up, NPR reports about the first man to step foot on the moon! But first, somebody named 'Thomas Edison' is said to have done something important!"

This is why I appreciate ASAN. It (mostly) describes autistic people as the adults we are, not the children we were. Humans are adults a lot longer than they are children. Let's focus on the big picture, even if we aren't as cute.


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Fnord
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19 Jan 2016, 9:42 pm

Another in the series: 'In A Different Key' Traces History And Politics Of Autism

I think it's been reviewed in another thread, but I'm not certain of that.


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19 Jan 2016, 10:41 pm

Driving home from work today, listening to NPR's "All Things Considered," they were talking about the "epidemic" of autism, the extreme breadth of the spectrum, and the lack of services for adults. None of this news to participants on these forums, but still, refreshing to hear they were giving it a broader audience.


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Fnord
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19 Jan 2016, 11:18 pm

That was the program I just linked to. You can read the transcript in the article.

I think it's great that someone is finally doing some in-depth journalism on autism, even if most of us on the spectrum have heard it all before.

Too bad the conservatives will either ignore it or brush it aside as only so much "socialist nonsense".


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Fnord
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20 Jan 2016, 1:45 pm

Uh-oh! Before anyone calls "Godwin" on this thread, please read the NPR article linked to below.

Was Dr. Asperger a Nazi?


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20 Jan 2016, 2:16 pm

This whole was-he-or-wasn't-he business is mostly academic, from my perspective. I'm not invested in making Hans Asperger out to be either a saint or a sinner. Yes, history is interesting stuff, but that's as far as it goes. (for me)


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As part of the enlistment process, [Bea] Arthur underwent interviews that resulted in the production of “personality appraisal” sheets. One such analysis described her conversation as “Argumentative” and her attitude and manner as “Over aggressive.” In a handwritten note, the Marine interviewer remarked, “Officious--but probably a good worker--if she has her own way!”


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20 Jan 2016, 4:43 pm

Fnord wrote:
Another in the series: 'In A Different Key' Traces History And Politics Of Autism

I think it's been reviewed in another thread, but I'm not certain of that.


Doubts about the book 'In A Different Key'
Included in the thread are discussions about the accusations from the book that Asperger was complicit in Nazi Eugenics


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Last edited by ASPartOfMe on 20 Jan 2016, 4:51 pm, edited 1 time in total.

Fnord
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20 Jan 2016, 4:48 pm

Now I have to wonder what the author's political interests are.

What would anyone stand to gain by discrediting the work of Dr. Asperger?


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20 Jan 2016, 5:14 pm

While I do not know the authors political interest they do have a personal interest. John Donvan's brother in law is autistic and Carol Zucker's son is autistic.

As I explained in the other thread there are many clinitions that have never fully accepted the wide autism spectrum of today or at least think the expanding definitions have gone way to far. If you give an opinion on Autism matters such as ABA to many Autism parents you will invariably be told that since you can write you are not autistic therefore you have no right to speak about autism. Asperger syndrome was popularized by Lorna Wing for the specific purpose of diagnosing people that she felt were autistic but we're not getting diagnosed due to the much stricter disgnostic criteria of that time. Therefore for many people Aspergers become symbolic of what they felt were socially ackward excuse making spoiled brats who were not really autistic getting diagnosed. If Hans Aspergers reputation is destroyed for many people the credibility of his ideas specifically the idea of the spectrum will be damaged.

Aspergers Syndrome: a clinical account Lorna Wing

Quote:
In the light of this finding, is there any justification for identifying Asperger syndrome as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of children and adults who have autistic features, but who talk grammatically and who are not socially aloof Such people are perplexing to parents, teachers and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Asperger's clinical descriptions help to convince the people concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.


Why claim Aspergers is over diagnosed?
Quote:
Susan Swedo, chair of the DSM-5 neurodevelopmental disorders workgroup, said (link is external) in May that many people who identify with Asperger’s Syndrome “don't actually have Asperger's disorder, much less an autism spectrum disorder.”
David Kupfer, chair of the task force charged with the DSM revisions, blurted (link is external) to the New York Times in January: “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger Disorder. It involves a use of treatment resources. It becomes a cost issue.” (This was startling to those who’d missed the memo that declared costs and treatment resources the responsibility of the APA. Which was everyone.)
Catherine Lord, the director of the Institute for Brain Development at New York-Presbyterian Hospital, and another member of the workgroup, told (link is external) Scientific American in January, “If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger's or PDD-NOS... We need to make sure the criteria are not pulling in kids who do not have these disorders.”
Paul Steinberg, a D.C. psychiatrist, declared in a New York Times op-ed (link is external) in January that “with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers” are erroneously and harmfully labeled autistic. He blamed a 1992 Department of Education directive that “called for enhanced services" for children diagnosed with autism spectrum disorders: “The diagnosis of Asperger syndrome went through the roof."
Dr. Bryna Siegel, a developmental psychologist at the University of California, San Francisco, told a Daily Beast reporter (link is external) in February that she “undiagnoses” nine of out ten students with so-called Asperger’s. Siegel was a member of the panel responsible for the inclusion of Asperger’s in the DSM-IV, which the reporter cited to me in a phone call as evidence :evil: of Seigel's objectivity: implicitly, Seigel is critiquing her own work. But that same journalist made no mention in the piece of Dr. Seigel’s history as an expert witness for school districts fending off families’ claims for those “enhanced services,” and the obvious conflict of interest (as well as the selection bias in her client pool) this represents. In October, she told New York magazine (link is external) that she undiagnoses six out of ten. That's quite a shift in eight months. Hope it was evidence-based.


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21 Jan 2016, 10:36 am

really enjoyed these



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21 Jan 2016, 2:31 pm

OF COURSE Asperger was complicit in Nazi eugenics.

Pretty much every f*****g serious academic, clinician, or researcher in the developed world at that point in time was complicit in eugenics (which, I do not need to tell you, did not originate with the Nazis-- that was Merrye Olde Englande and The Land of the Free that came up with that). Eugenics was f*****g canon at that time.

As far as the articles in the OP go, I think it was fair reporting. That's about all I can say...

...except that, if Miss Samantha wants to get a big back yard and have chickens and maybe have kids someday, her best bet would be to start by learning to take care of her kitchen. And then her finances.


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21 Jan 2016, 2:45 pm

Let's boil this all down a bit, huh?

Option 1: Asperger could have stood up to his Nazi overlords and told them all to go to Hell. He would have ended dead, and the children in his care would have been killed, too.

Option 2: Asperger could have moved to the United Kingdom of the United States and continue his research unabated (like Kanner). The children in his care would have been "managed" by a different, German Reigh, clinician, and many if not all of them would have been killed, anyway.

Option 3: Asperger could have tried to cleverly "comply" with Nazi expectation as it appears he did. He would have continued his research and lived out his full life, and saved about 75 percent of the children in his care as it appears he did.

Should we condemn him for choosing option 3?


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