Aspies to be demoted to Autistics.

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11 Dec 2012, 12:52 pm

I think it's kind of a pain that there's so much focus on the social aspects of Asperger's--as though it could easily be renamed "social learning disability". It can't be. There's much more to it; the social deficits are just the most visible sign of a basic cognitive difference.

I know that for some people the social aspects really are the most significant or the most distressing, but if you can be diagnosed with Asperger's, then you have cognitive impairments that are completely unrelated to socializing and that persist even if you are totally alone.

There are probably a few cases out there that could be called "social learning disability", but these don't fit the Asperger's criteria. Perhaps some of them have been diagnosed as personality disorders, others just thrown into the PDD-NOS miscellaneous pile. But I'm not entirely sure that they can be properly put on the autism spectrum--not with such specific (i.e., non-pervasive) deficits.

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drh1138
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11 Dec 2012, 1:38 pm

I don't really see what the problem is; for one, aside from loosely-thrown terminology, it's insulting to consider it a "demotion". Secondly, it's just a label, and things are what they are independent of what we choose to name them.

VisInsita
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11 Dec 2012, 2:14 pm

Tuttle wrote:

Only having read Kanner's paper doesn't let you compare the two papers.

Kanner didn't describe people who are the "only socially akward" that people think of as Asperger's Syndrome today.

Asperger didn't either.

Its not only about what Kanner did and didn't describe - its also about what Asperger did and didn't describe.

There were differences in the patients they described, but as a whole they'd mostly fall into HFA today.

What Asperger described and the stereotype for Asperger's today are not the same - he described people much closer to what Kanner described than the people who are "so much higher functioning". He just wrote it in a far more positive manner.

Actually I have read Asperger’s paper. But the thing is I wasn’t speaking of it. I was referring to the in my opinion false statements you made of Kanner’s paper per se, as you also made those statements per se and used them as arguments per se.

Few examples of these false statements you made regarding Kanner’s paper:

“Kanner's work described people who were "high functioning" as a whole.” I can’t agree at all.

“What neither of them described are actually what their syndromes are now.” All the current core symptoms of classic autism are present in Kanner’s study.

“--people who have someone who is non-verbal, rocking in a corner, melting down regularly, and they can't find any way to get through to the child, will be upset by the change, but that isn't what Kanner described, even if that's what people call "Kanner's autism."

Most of the studied were nonverbal until late and even after they acquired language it was in its quality often non-communicative and consisting merely of typical autistic features like learned phrases, echolalia and lack of self-referential pronouns or any real “conversational” skills. Kanner also in every case reported very thoroughly those repetitive actions children engaged and often were fully absorbed in. There were several accounts of "melt downs". Also in every case and in very many ways he described parents’ inability and desperate attempts to get through to the child. The indifference and self-fullfilled quality of the autist in relation to others seemed puzzling to Kanner and was his main focus - thus even the name autism.

Last edited by VisInsita on 11 Dec 2012, 2:25 pm, edited 1 time in total.

btbnnyr
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11 Dec 2012, 2:19 pm

Most of the not mute children in Kanner's study could speak with meaning. Their speech was atypical, and repeating or talking to self was much more common than communicating to others, and they could not maintain conversations, but they could convey meaning in spoken language. Most of them were ahead of me in doing that at the same ages.

What Kanner described is the classic autism of today with the core autistic traits at moderate to high severity. Some of them did seem high functioning to me, or it only seemed to me because they were higher functioning than me at same ages. The classic autism of today is not just a non-verbal child rocking in a corner completely cut off from eberryone. I think that more of the children could have developed to become high-functioning, if they had been raised at home and gone to school and not been institutionalized.

Tuttle
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11 Dec 2012, 2:46 pm

I'm not saying he didn't describe classic autism. I'm saying most of them were high functioning classic autism. There's a bunch of people on these forums who I'd compare to the people Kanner described who I'd also consider high functioning and comparable to the people Kanner described.

This doesn't mean they didn't have a language delay, didn't have a delay in getting to where they are, or any of that. It doesn't mean they don't have speech abnormalities. It doesn't mean any of that.

It means that they are able to interact with the world in a way that most people can understand.

The people who are insistent on calling it Kanner's autism are not those people.

(And I'm not saying high functioning people don't have meltdowns - I'm saying that the parents describing the children of "low functioning" children often talk about how the meltdowns are the only thing that occur as if that's the only part of their life and their children are no more than rocking and meltdowns, and as if that's all "Kannner's autism" is - rocking, meltdowns, being nonverbal, and not interacting with the world in ways the parents unerstnd, and how people who speak aren't "really autistic", even though that's who Kanner described even were people who were verbal. They go around telling even people with classic autism that they're not really autistic and don't deserve services.)

btbnnyr
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11 Dec 2012, 3:01 pm

I never heard anyone offline call it Kanner's autism. The parents I met at my office call it autism. Most of them don't know who Kanner is. I have read people online call it Kanner's autism. These people usually spew zombie stereotypes of autistic children. The ones I have read, they are not parents of autistic children. They are random know-nothings talking nonsense. I have heard of there being some parents like this, but I have not yet met one. The parents I have met tell me that these other parents know nothing about what autism is, think that autism is the same as profound mental retardation, think that their children can't learn anything ever, and want a quick fix cure to make their children normal. That is what I have heard from others, not observed for myself.

I have read some arguments between parents of non-verbal "low functioning" autistic children and verbal high functioning autistic adults. I don't agree with either side, and I think most of the issues that they argue about are meaningless. I don't even like some of these autistic self-advocates representing me, a verbal high functioning autistic adult.

aghogday
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11 Dec 2012, 3:09 pm

btbnnyr wrote:

Eventually four of the children did learn to convey meaning to others, as described by Kanner, and this is the case for for some children described as lacking functional language in childhood today. Kanner identified that in his paper, but earlier in childhood, in Kanner's actual description on page 243 of his paper, that I linked, he did identify all of the children including the speaking children as not being able to convey meaningful language to others. He didn't consider the memorization of nursery rhymes or other feats of rote memory or repeating the language of others, conveying meaningful language to others. And that is still not considered functional language by some professionals, however there is disagreement among some professionals where the line is in spoken language for what is described as non-verbal or verbal as a descriptive term for individuals on the spectrum.

VisInsita
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11 Dec 2012, 3:42 pm

Kanner described also later development of the children he studied. We can probably agree that he described in his paper also quite high functioning persons, like Donald. According to the follow-up study Don studied French and lived at the age of 36 at home as a bachelor. He worked in a bank. Also Frederick managed to get a job.

But most of the others didn’t develop truly meaningful language and none of the others developed real independence. Barbara was described at the age of 33 still showing total absence of spontaneous sentence production and using same phrases all over. She was stereotyped and still in many ways very autistic. Richard ended up living in an institution and continued to be withdrawn and couldn’t be involved in any structured activities. Also Virginia ended up living in an institution and at the age of 40 she was still nonverbal. Herbert didn’t have any language at the time of the initial paper and also remained so. Charles lived similarly in an institution and had a small vocabulary. Elaine lived in a hospital. She spoke slowly, but couldn’t participate in a conversation. She could bang her head to the walls, and at other times be more lucid, as Kanner described.

btbnnyr
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11 Dec 2012, 4:34 pm

This is from another paper on same website, yikes:

Quote:

Charles, Case 9 of the original series (1), was 4+ when his mother brought him to the clinic with the distressed complaint, "I can't reach my baby." The history of precocious intellectual accomplishments, pronominal reversals, obsessive behavior, and marked detachment presented the classical features of autism. Charles "related" to the examiners only in so far as he made demands or became enraged at interference from without. His excellent vocabulary was manifested by the ejaculation of words and phrases that had no function as communication to others. He was referred to the Devereux Schools. During his year of residence there, definite though limited improvement could be noted in his social responsiveness. His parents, however, dissatisfied with the slowness of his progress, removed him against advice in order to hospitalize him at another institution where he was given a course of electroconvulsive therapy. Almost at once, marked regressive trends were noted and it became necessary to place him in a state hospital because of outbursts of aggressive behavior, soiling and smearing, and further withdrawal. At 8 he was transferred to an intensive therapy center in a children's unit. There he displayed "disorganized and regressive behavior... incoherent and irrelevant speech..." His failure to respond to therapeutic efforts led to his removal to a state hospital at 13. Now 15, he exhibits "schizophrenic deterioration... emotional blunting interrupted by periods of excitement... [he is] withdrawn, disoriented, unclean, destructive, and frequently depressed..."

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11 Dec 2012, 4:57 pm

This is an article by John Donovan and Caren Zucker, who met Donald Gray Triplett (age 77 at that moment), in 2010.
Autism's first child

Quote:

For all the progress that Donald has made in the decades since—the driving, the golfing—conversation is an art that continues to elude him. He initiates on occasion, but his purpose is generally to elicit a piece of information he needs (“What time is lunch?”) or to make a passing observation (his comment about the sticker on our car). A regular chat, the casual back-and-forth of kicking around an idea, is something he has never experienced.

When asked questions—even questions that invite some elaboration—he responds in a terse, one-way manner, like a man working his way through a questionnaire.

Topic: Donald’s sense of achievement at being able to multiply in his head

“Donald, how does it make you feel that it just comes out of your head?”

“It just comes out.”

“Does it make you feel good?”

“Oh yes, oh yes.”

“Can you describe it?”

“No, I can’t describe it.”

Topic: Donald’s memory of meeting the mentalist Franz Polgar

“Donald, do you remember Franz Polgar?”

“Yes, I do remember Franz Polgar.”

[Silence.]

“When did he come?”

“Actually he came twice. He came in 1950 and 1951.”

[Another long lapse.]

“Who was he?”

“He was a hypnotist.”

“Can you tell me what he was like? Was he an old man?”

“He was probably 55 years old. And he’d be 110 if he were living.”

Quote:

Although Donald obviously enjoys pondering lists of people, places, and things, he does not engage easily with implication, mood, or emotion.

Topic: The death of his mother, Mary Triplett, who took care of Donald for 52 years

“Donald, when did your mother die?”

“It was 1985. May 1985.”

“Do you remember where you were?”

“I was at the bank. Her doctor had said it was just a matter of time … and I got the word saying that she had passed away with congestive heart failure.”

“Do you remember how you felt?”

“It was rather expected. I wasn’t really downhearted or weeping or anything like that.”

“Were you not downhearted because … ?”

“I just don’t react. Different people react differently to situations like that.”

Asked whether he missed his mother, he replied—questionnaire again—“Yes, I miss her.” He said he also misses his father, whose death in a 1980 car accident he described in a similarly matter-of-fact manner. He recalls that his dad’s accident was a shock and, again, that he didn’t cry.

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Jlenegan
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11 Dec 2012, 7:21 pm

aghogday wrote:

Tuttle wrote:

aghogday wrote:

Yes, I have read it and was not suggesting that all of Kanner's case studies were non-verbal, but it is the characteristic that historically has set the two diagnoses apart along with intellectual disability. It could have been reasonable to call it a co-morbid condition at the time of Kanner's work, but it was continued to be identified an optional requirement to be diagnosed with Autistic Disorder. Those with that condition are more obviously impacted and identified as severely impacted, so this is where most of the attention has been focused. That's not surprising.

http://harvardmagazine.com/2008/01/a-spectrum-of-disorders-html

What I'm saying is some of that is from after Kanner's work. Kanner's work described people who were "high functioning" as a whole. When people went and looked at it later, is when it was applied to people who were "low functioning", and was focused there, and the people Kanner had actually focused his work on (not having left out the other people, but most he'd described, and most of what he'd done), weren't being diagnosed, they were focusing on people who were "lower functioning".

It's called Kanner's autism, but its not Kanner's. Kanner's autism, what he actually described, is actually much closer to what Asperger described - not the same, but much more similar.

What neither of them described are actually what their syndromes are now. They were different, but they were far more similar than people really want to admit.

The DSM-5 actually is possibly closer to what both of them described. I still prefer the Gillberg criteria for a lot of us though (including some people who have classic autism), and think we can do better than the DSM-5.

Yes, people who have someone who is non-verbal, rocking in a corner, melting down regularly, and they can't find any way to get through to the child, will be upset by the change, but that isn't what Kanner described, even if that's what people call "Kanner's autism"

http://simonsfoundation.s3.amazonaws.co ... ontact.pdf

Kanner did not describe a high functioning outcome in any of the children in his paper. And while Kanner didn't describe all his cases like you described in your description of modern day autism, they were not that far off per some of the descriptions of the children's inability to connect with the world and insistence on sameness. The word meltdown wasn't used by Kanner but temper tantrums, and destructive behavior was described in some of his case studies linked above.

I think it is possible that you may have mistaken some of the descriptions of the outstanding abilities of the parents of the children described in Kanner's paper, as in Kanner's actual paper linked above, "Disturbances of Autistic Affective Contact", there where 11 case studies of children where 3 of the children remained mute, and among the 8 who could speak, some of whom spoke after a language delay, they were not reported to convey any meaning to others in their speech. One of the children was described as having a language regression, similar to what is described in regressive autism, today. All the children were described as having severe language impairments. This is information is summarized by Kanner on page 243 of Kanner's paper from the link above.

And in a followup report of the children as adults, from the link below, it shows only 2 adult outcomes that could be reasonably considered "high functioning" outcomes, even for the one individual, Alfred, that was measured as having exceptional IQ, that ended up in a school for brain damaged individuals. If modern day therapies would have been available at the time, perhaps some of the other cases could have had better outcomes than institutional care. Kanner did not identify an expectation of high outcomes for any of the 11 case studies, in his paper.

"The outstanding pathognomonic characteristics were viewed as (a) the children's inability from the beginning of life to relate themselves to people and situations in the ordinary way, and (b) an anxiously obsessive desire for the preservation of sameness." This is quoted from the link below, close to what dillogic described and is similar to what Hans Asperger's described but the serious nature of language impairments in all of the children Kanner descried, did make a substantial difference in expectation of outcomes as opposed to what Hans Asperger's described in his case study of 4 children.

http://www.neurodiversity.com/library_kanner_1971.html

http://www.theatlantic.com/magazine/archive/2010/10/autisms-first-child/308227/2/
The first guy sees fairly high functioning.

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11 Dec 2012, 7:52 pm

Tuttle wrote:

What Asperger described and the stereotype for Asperger's today are not the same - he described people much closer to what Kanner described than the people who are "so much higher functioning". He just wrote it in a far more positive manner.

He explicitly focused on his patents' strengths because he was working under the Nazi regime and was making the argument that these children deserved to live. Given the intent, he was going to focus on what these children could do rather than elaborate on what he didn't believe they could do.

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11 Dec 2012, 7:58 pm

FYI and all, Hans wasn't that positive. People tend to focus on the "good" quotes, not the many "bad" ones. If you read the entire paper (Uta translated a copy IIRC), it's not that "good".

Of note though, nearly all of Hans' patients, if not all (he had a lot more than the initial cases studies), generally had adequate speech (that's the ability to initiate and sustain a conversation, even if only one-sided and lecturing), even if it was delayed.

Contrasted to Kanner's, where even if they had speech, the ability to start and sustain a conversation was often lacking.

Funny how the DSM-IV-TR has that actually as a criterion for Autistic Disorder.

I think aghogday is right, the DSM-V is biased towards we who're higher functioning (not the other way around; there's lots of irony there given how most tend to think it's biased against AS).

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11 Dec 2012, 8:07 pm

btbnnyr wrote:

This is what I read in the papers. I find it strange that Kanner can describe speech with meaning and then say it is meaningless, and be taken at face value for saying so.

btbnnyr
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11 Dec 2012, 10:33 pm

It is true that an autistic child can have echoing, talking to self, and a little communicative language in early childhood, while knowing how to read and write words hyperlexically, and still not develop more advanced language for communication or much verbal comprehension. I know some who did ABA and traditional ST (did not work) for years and were in special ed classroom in school (aka daycare), so as teenagers, they continue to speak in the same ways that they did in early childhood. The advanced language did not develop by itself, and it was not taught effectively either.

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11 Dec 2012, 11:06 pm

Verdandi wrote:

btbnnyr wrote:

This is what I read in the papers. I find it strange that Kanner can describe speech with meaning and then say it is meaningless, and be taken at face value for saying so.

I found a source that allows cutting and pasting. Kanner did not describe the speech as having no inherent meaning so there is no contradiction of ideas in his paper. Obviously Nursery rhymes and intelligible speech have inherent meaning for those that understand the English language whether spoken or read in a book. Quoted directly from his paper below describing the use of language of the children: " In none of the eight "speaking" children has language over a period years served to convey meaning to others."

In other words, the nursery rhymes, prayers, lists of animals, the roster of presidents, the alphabet forward and backward, even foreign-language (French) lullabies generated by the children in spoken language described in the case studies and identified again in context to this statement in the discussion section of his paper quoted below, was not language over a period of years that served to convey meaning to others. That's not a suggestion by Kanner that French lullabies have no inherent meaning when spoken anymore than when a person reads them in a book; instead he identified that the lullabies were not used as language to convey meaning to others.

http://www.aspires-relationships.com/ar ... Discussion

Quote:

Eight of the eleven children acquired the ability to speak either at the usual age or after some delay. Three (Richard, Herbert, Virginia) have so far remained “mute.”In none of the eight “speaking” children has language over a period of years served to convey meaning to others. They were, with the exception of John F., capable of clear articulation and phonation. Naming of objects presented no difficulty; even long and unusual words were learned and retained with remarkable facility. Almost all the parents reported, usually with much pride, that the children had learned at an early age to repeat an inordinate number of nursery rhymes, prayers, lists of animals, the roster of presidents, the alphabet forward and backward, even foreign-language (French) lullabies. Aside from the recital of sentences contained in the ready-made poems or other remembered pieces, it took a long time before they began to put words together. Other than that, “language”consisted mainly of “naming,”of nouns identifying objects, adjectives indicating colors, and numbers indicating nothing specific.

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