NPR series on families with autistic children.
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.
ASPartOfMe
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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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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
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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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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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (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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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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A finger in every pie.
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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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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ASPartOfMe
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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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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
Last edited by ASPartOfMe on 20 Jan 2016, 4:51 pm, edited 1 time in total.
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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ASPartOfMe
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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
Why claim Aspergers is over diagnosed?
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 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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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
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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"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
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?
_________________
Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)
ASPartOfMe
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Option 4 he complied because he at least partially agreed with the orders
We will will never know what was in his mind.
While respecting and carrying out his science do we continue to honor him by using the collequal terms "Asperger syndrome" and "Aspie"?. That is up to each individual "Aspie"
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
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