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Callista
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18 Jul 2010, 1:10 am

DandelionFireworks wrote:
As for your last comment, well, duh. But just because you can function as you are doesn't mean you're not on the Spectrum. It's worth knowing what you are, even if that doesn't cause problems. I mean, I really liken it to NTs taking personality tests. There's no requirement in those that it cause an impairment in functioning, and there shouldn't be for us. Social model of disability, right? You can't claim that it's okay to be autistic and then claim that you can't be autistic if you function. If this world were set up for me I wouldn't fit that criterion, and nor would you or anyone else.
No, there is--and should be--a requirement for impairment in functioning.

Diagnosis is a tool. It's not a personality test; it's putting a name to something that requires professional help. Now, that "professional help" might be only intermittent; but if you don't have an impairment, then you shouldn't have a diagnosis.

The new DSM does have categories for "subclinical" traits--that is, the group that cannot be diagnosed, but has autism-like traits, including people who have mild traits and people who used to be diagnosable but are no longer diagnosable. That is the group you're in if you have autistic traits and function fine in society. People in this group can be what I call "culturally autistic"--that is, people who have a similar cognitive style as diagnosed autistics, and similar experiences, sharing all but the need for diagnosis. The subclinical category is useful when treating people for something other than autism; for example, someone with dyslexia and subclinical autistic traits may respond differently to reading lessons than someone with dyslexia and subclinical ADHD traits...

But no. You do not need, and should not have, a diagnosis if you do not have impairment. Any psychologist who gives you one isn't a competent doctor--though it can be a sensible move to note the presence of subclinical autistic traits in your patient file, if you are seeking help for someone else, since it does impact treatment.

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There are those who have personality disorders like schizoid and schizotypal personality that are on the schizophrenic spectrum, but I don't think that people who have those disorders would want to be labeled schizophrenic, not only because there is a greater stigma attached, but also because it would be inaccurate. There are different symptoms associated with each, and people who have personality disorders don't typically have symptoms of psychosis.
That's what makes the difference, though, doesn't it? Psychosis is a very significant symptom. There is no such additional significant symptom in "autistic" versus "Asperger's" people--even the speech delay tends to vanish after five years old, and the speech of "Asperger's" people tends to be highly unusual, with such a large overlap with "autistic" people that there's really no strong dividing line.


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Last edited by Callista on 18 Jul 2010, 1:14 am, edited 1 time in total.

one-A-N
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18 Jul 2010, 1:10 am

When I was going through university, majoring in psychology, back in the 1970s, there was no Asperger's syndrome (and no ADHD for that matter). "Infantile autism" was classified as a type of "childhood psychosis". I came away with a picture of a silent child, sitting in an institution, rocking or banging their head against a wall - and incapable of social relationships. That was the picture served up back then. It is no wonder that "autism" has entered the popular mind, over the decades, as a severely disabling condition, apart from those legendary savant skills. And it never occurred to me that that condition might have something to do with me and my problems.

But DSM-V doesn't drop Asperger's and leave everyone classified with "autism" - it merges Asperger's syndrome, autism, and PDD-NOS into an "autism spectrum". Where there was once this monolithic "autism", a "childhood psychosis" that implied a severely disabled child, there is now a spectrum - a diverse range of characteristics from which individuals have different selections of characteristics, and only some match the classic, severely disabled child that Kanner described. We differ in "degree of impairment", we differ in types of strengths and weaknesses (I am not highly visual like Temple Grandin, I am more the mathematics/pattern/languages type of person), and we differ in our own abilities at different times (maybe on the same day). "Autism spectrum" is a bit like a "fracture": there is a world of difference between fracturing a small bone in your middle toe, and a spinal fracture or a fractured skull. One won't even get you an X-ray or time off work or a cast (I was told to use band-aids for my fractured middle toe); the other might put you in hospital in intensive care. But they are both fractures.

The reality is, there is a broad range of autistic characteristics with no real sharp subdivisions into "types". Even the much-vaunted language delay overlooks the person who learns language early ... but uses it "oddly", differently to the NT. And then there is the person with language delay, who has now "caught up" (I believe Einstein fell into that category). Scientific understanding of the autism spectrum has evolved. The public perception will have to evolve too - and it will, just more slowly than the scientific understanding has evolved. To be honest, I doubt that we have heard the last of changes in the scientific understanding of the autism spectrum. Advances in neurology and genetics, including different tools for measuring brain activity, may create new categories where - at the moment - psychologists and psychiatrists can only see similar external behaviors. Similar behaviors may be caused by different underlying neurological mechanisms, and our behavior-based classification may be superseded.

You cannot afford to tie your identity too tightly to a moving target, and that is what a scientific classification is. So you have to start explaining the spectrum: not a single-dimensional spectrum (mild to severe) but a many-dimensional spectrum (e.g. "my type of sound sensitivity is a tendency to sudden rage when hearing even soft eating or drinking noises, like slurping..." - yes, even our sensory sensitivity is a spectrum disorder. You don't necessarily react to the same sounds that I react to).



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18 Jul 2010, 1:59 am

The people that Kanner described mostly did not meet the "severely disabled child" stereotype that many people have in mind these days. Some of them would now likely be diagnosed with Asperger's. Several of them graduated college. Most of them spoke, some of them on time or early. Most of them had an IQ higher than 70, one had an IQ in the 140s or 150s, can't remember, and one nearly-nonspeaking girl had an IQ in the 90s and presumed higher. (Some texts in the 70s even said Kanner syndrome required an at least somewhat normal IQ, whereas those with lower IQs tended to be considered childhood schizophrenia instead.)

Here are some quotes I compiled awhile ago directly from Kanner's writing. (There is even more stuff of interest in other things he wrote, but I never got around to finding that stuff.) All of which goes against the stereotype of "mute child sitting in a corner doing nothing but rocking and headbanging" -- even the mute children did not fit this. (Kanner did write about institutions causing autistic people to lose skills, the same way they cause all people to lose skills -- sitting alone in a corner and rocking is not necessarily unusual behavior for institutionalized people without any particular condition.)

Anyway, here come the quotes:

About Donald T:

At the age of 1 year “he could hum and sing many tunes accurately”. Before he was 2 years old, he had “an unusual memory for faces and names, knew the names of a great number of houses” in his home town. “He was encouraged by the family in learning and reciting short poems, and even learned the Twenty-Third Psalm and twenty-five questions and answers of the Presbyterian Catechism.” The parents observed that “he was not learning to ask questions or to answer questions unless they pertained to rhymes or things of this nature, and often then he would ask no question except in single words.” His enunciation was clear. He became interested in pictures and very soon knew an inordinate number of the pictures in a set of Compton’s Encyclopedia.” He knew the pictures of the presidents “and knew most of the pictures of his ancestors and kinfolks on both sides of the house.” He quickly learned the whole alphabet “backward as well as forward” and to count to 100. [Describing a few years later:] He quickly began to read fluently and to play simple tunes on the piano. [...] He expressed puzzlement about the inconsistencies of spelling: “bite” should be spelled “bight” to correspond to the spelling of “light”. He could spend hours writing on the blackboard. [...] He got hold of an encyclopedia and learned about fifteen words in the index and kept repeating them over and over again. [...] Another of his recent hobbies is with old issues of Time Magazine. He found a copy of the first issue of March 3, 1923, and has attempted to make a list of the dates of publication of each issue since that time. So far he has gotten to April, 1934. He has figured out the number of issues in a volume and similar nonsense.

About Frederick W:

He has said at least two words ["Daddy" and "Dora," the mother's first name] before he was 2 years old. From then on between 2 and 3 years, he would say words that seemed to come as a surprise to himself. He’d say them once and never repeat them. One of first words he said was “overalls,” [The parents never expected him to answer any of their questions, were once surprised when he did give an answer-"Yes".] At About 2 1/2 years, he began to sing. He sang about twenty or thirty songs, including a little French lullaby. In his fourth year, I tried to make him ask for things before he’d get them. He was stronger-willed than I was and held out longer, and he would not get it but he never in about it. Now he can count up to into the hundreds and can read numbers, but he is not interested in numbers as they apply to objects. He has great difficulty in learning the proper use of personal pronouns. When receiving a gift, he would say of himself: “You say ‘Thank you.’”
He bowls, and when he sees the pins go down, he’ll jump up and down in great glee.

About Paul G.:

At 3 years, he knew the words of not less than thirty-seven songs and various and sundry nursery rhymes. [...] Upon entering the room, he instantly went after the objects and used them correctly. He was not destructive and treated the objects with care and even affection. He picked up a pencil and scribbled on paper that he found on the table. He opened a box, took out a toy telephone, singing again and again “He wants the telephone,” and went around the room with the mouthpiece and receiver in the proper position. He got hold of a pair of scissors and patiently and skillfully cut a sheet of paper into small bits, singing the phrase, “Cutting paper,” many times. He helped himself to a toy engine, ran around the room holding it up high and singing, “The engine is flying.” [...] His enunciation was clear, and he had a good vocabulary. His sentence construction was satisfactory, with one significant exception. He never used the pronoun of the first person, nor did he refer to himself as Paul. [...] Formal testing could not be carried out, but he certainly could not be regarded as feebleminded in the ordinary sense. After hearing his boarding mother say grace three times, he retained it without a flaw and has retained it since then. He could count and name colors. He learned quickly how to identify his favorite Victrola records from a large stack and knew how to mount and play them.

About Barbara K:

Ordinary vocabulary at 2 years, but always slow at putting words into sentences. Phenomenal ability to spell, read, and a good writer, but still has difficulty with verbal expression. Written language has helped the verbal. [...] In camp last summer she was well liked, learned to swim, is graceful in water (had always appeared awkward in her motility before), overcame fear of ponies, played best with children 5 years of age. [...] Attracted by a pen on the desk stand, she said “Pen like yours at home.” Then, seeing a pencil, she inquired: “May I take this home?” [...] She read excellently, finishing the 10-year Binet fire story in thirty-three seconds and with no errors, but was unable to reproduce from memory anything she had read. In the Binet pictures, she saw (or at least reported) no action or relatedness between the single items, which she had no difficulty enumerating. Her handwriting was legible. [...] She knew the days of the week.

Of Virginia S:

She is neat and tidy, and does not play with other children, and does not seem to be deaf from the gross tests, but does not talk. The child will amuse herself by the hour putting picture puzzles together, sticking to them until they are done. I have seen her with a box filled with the parts of two puzzles gradually work out the pieces for each. [...] She pays no attention to what is said to her but quickly comprehends what is expected. Her performance reflects discrimination, care, and precision. With the nonlanguage items of the Binet and Merrill-Palmer tests, she achieved an IQ of 94. “Without a doubt,” commented the psychologist, “Her intelligence is superior to this." [...] she finds pleasure in dealing with things, about which she shows imagination and initiative. [...] She remembered (after more than a year) where the toys were kept and helped herself. [...] Quick, skilled moves. Trial and error plus insight. Very few futile moves. Immediate retesting reduced the time and error by more than half. [...] In December I heard her hum the perfect tune of a Christmas hymn while she was pasting paper chains.

About Dorothy, the sister of Herbert B (not diagnosed as autistic but described as in early life ignoring most people, dancing in circles, making queer noises with her mouth, and reversing pronouns):

She was first declared to be feebleminded, then schizophrenic, but after the parents separated (the children remaining with their mother) she “blossomed out”. She now attends school, where she makes good progress; she talks well, has an IQ of 108, and — though sensitive and moderately apprehensive — is interested in people and gets along reasonably well with them.

About Herbert B himself:

Within certain limits, he displayed astounding purposefulness in the pursuit of self-selected goals. Among a group of blocks, he instantly recognized those that were glued to a board and those that were detachable. He could build a tower of blocks as skillfully and as high as any child his age or even older. [...] He went after the Seguin form board and instantly busied himself putting the figures into their proper spaces and taking them out again adroitly and quickly. [...] When one figure was stealthily removed, he immediately noticed its absence, became disturbed, but promptly forgot all about it when it was put back.

About Alfred L.:

He has gradually shown a marked tendency toward developing one special interest which will completely dominate his day’s activities. He talks of little else while the interest exists, he frets when he is not able to indulge in it (by seeing it, coming in contact with it, drawing pictures of it), and it is difficult to get his attention because of his preoccupation…. there has also been the problem of an overattachment to the world of objects and failure to develop the usual amount of social awareness. [...] Since he talked, there has been a tendency to repeat over and over word or statement. He almost never says a sentence without repeating it. Yesterday, when looking at a picture, he said many times, “Some cows standing in the water.” We counted fifty repetitions, then he stopped after several more and then began over and over. [...] Alfred, upon entering the office, paid no attention to the examiner. He immediately spotted a train in the toy cabinet, took it out, and connected and disconnected the cars in a slow, monotonous manner. He kept saying many times, “More train- more train- more train.” He repeatedly “counted” the car windows: “One, two windows-one, two windows-one, two windows-four window, eight window, eight windows.” He could not in any way be distracted from the trains. A Binet test was attempted in a room in which there were no trains. It was possible with much difficulty to pierce form time to time through his preoccupations. He finally complied in most instances in a manner that clearly indicated that he wanted to get through with the particular intrusion; this was repeated with each individual item of the task. In the end he achieved an IQ of 140. [...]

Alfred was extremely tense during the entire interview, and very serious-minded, to such an extent that had it not been for his juvenile voice, he might have given the impression of a worried and preoccupied little old man. At the same time, he was very restless and showed considerable pressure of talk, which had nothing personal in it but consisted of obsessive questions about windows, shades, dark rooms, especially the X-ray room. He never smiled. No change of topic could get him away from the topic of light and darkness. But in between he answered the examiner’s questions, which often had to be repeated several times, and to which he sometimes responded as the result of a bargain -”You answer my question, and I’ll answer yours.” He was painstakingly specific in his definitions. A balloon “is made out of lined rubber and has air in it and some have gas and sometimes they go up in the air and sometimes they can hold up and when they got a hole in it they’ll bust up; if people squeeze they’ll bust. Isn’t right?” A tiger “is a thing, animal, striped, like a cat, can scratch, eats people up, wild, lives in the jungle sometimes and in the forests, mostly in the jungle. Isn’t right?” [...] He once stopped and asked, very much perplexed, why there was “The Johns Hopkins Hospital” printed on the history sheets: “Why do they have to say it?” This, to him, was a real problem of major importance, calling for a great deal of thought and discussion. Since the histories were taken at the hospital, why should it be necessary to have the name on every sheet, though the person writing on it knew where was writing? The examiner, whom he remembered very well from his visit six years previously, was to him nothing more nor less than a person who expected to answer his obsessive questions about darkness and light.

Charles N:

He will break a purple crayon into two parts and say, “You had a beautiful purple crayon and now it’s two pieces. Look what you did.” … He is proud of wetting, jumps up and down with ecstasy, says, “Look at the big puddle he made” [...] Without looking at anyone, he said, “Give me a pencil!” and took a piece of paper from the desk and wrote something resembling a figure 2 ( a large desk calendar prominently displayed a figure 2; the day was February 2). He had brought with him a copy of Readers Digest and was fascinated by a picture of a baby. He said, “Look at the funny baby,” innumerable times, occasionally adding, “Is he not funny? Is he not sweet?” When the book was taken away from him, he struggled with the hand that held it, without looking at the person who had taken the book. When he was with a pin, he said, “What’s this?” and answered his own question: “It is a needle.” [...] When confronted with the Seguin form board, he was mainly interested in the names of the forms, before putting them into their appropriate holes. He often spun the forms around, jumping up and down excitedly while they were in motion. the whole performance was very repetitious. He never used language as a means of communicating with people. He remembered names, such as “octagon,” “diamond,” “oblong block,” but nevertheless kept asking, “What is this?”

About John F:

At 5 1/2 years, he had good mastery of the use of pronouns. He had begun to feed himself satisfactorily. He saw a group photograph in the office and asked his father, “When are they coming out of the picture and coming in here:”
He was very serious about this. His father said something about the pictures they have at home on the wall. This disturbed John somewhat. he corrected his father: “We have them near the wall” ( “on” apparently meaning to him “above” or “on top”).
When he saw a penny, he said, “Penny. That’s where you play tenpins.” He had been given pennies when he knocked over tenpins while playing with his father at home. He saw a dictionary and said to his father, “That’s where you left the money?”
Once his father had left some money in a dictionary and asked John to tell his mother about it. His father whistled a tune and John correctly identified it as “Mendelssohn’s violin concerto.”

Elaine C:

When she began to speak at about 5 years, she started out with complete though simple sentences that were “mechanical phrases” not related to the situation of the moment or related to it in a peculiar metaphorical way. She had an excellent vocabulary, knew especially the names and “classifications” of animals. She did not use pronouns correctly, but used plurals and tenses well. She “could not use negatives but recognized their meaning when others used them.” [...] She speaks well on almost any subject, though with something of an odd intonation. Her conversation is still rambling talk, frequently with an amusing point, and it is only occasional, deliberate, and announced. She reads very well, but she reads fast, jumbling words, not pronouncing clearly, and not making proper emphases. Her range of information is really quite wide, and her memory almost infallible.

*****

In other words, pretty much all of Kanner's patients would today be regarded as "high functioning" by one definition or another. People regarded as "low functioning" were added on to the spectrum sometime in the fifties or sixties, and some people did not like this. (And this is how "Kanner autism" in some circles came to mean "high functioning", a use that even existed in the 1980s in some contexts.) All of Kanner's patients interacted with people (even when Kanner claimed they didn't, he would write about them doing things that were clearly interaction -- Kanner had his own biases, for instance he will describe a child as not noticing anyone, but the child still requesting a pencil from someone, when clearly he was focusing on the child's body language rather than the reality), most used language (some oddly), all showed a fair bit of comprehension of their environment, none of them are described as banging their heads (unless I missed something), and while they do repetitive things, they're not so repetitive as simply sitting and rocking and doing nothing else.

What I am astounded by is how many professionals (I don't mean you, I've just seen it a lot) insist on giving an interpretation of "Kanner's autism" that doesn't match many (sometimes not even any) of Kanner's actual patients. It's as if they've never read his paper. Or as if they read it with mental blinders on. Or something. And then they pass on what they've heard, to new people who don't bother to check, and so the cycle continues.


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DandelionFireworks
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18 Jul 2010, 2:08 am

It shouldn't be about that. That's counter-productive. If I learn to completely mimic NT social interaction, and lose my diagnosis (first of all, that would imply that a "cure" is possible simply through learning), that's never going to be a good thing, no matter why it is.

1. It encourages the curebies. "Oh, this person was cured! My son can be cured, too! And he says he did it through learning... so let's try the JRC!"

2. Functioning fluctuates by environment. If I don't have an impairment in functioning because of the environment I'm in, that doesn't make me less autistic. I spent a long time essentially without any chance for social interaction, and my particular mental style allowed me to survive better than an NT. In a different environment, my functioning would have been impaired, even if I were the same person. In fact, it looks like for the job I want to hold, I will be disabled by my Asperger's.

3. Functioning fluctuates over time. If I'm impaired as a child, then learn social skills and can function just fine as a teen, then go off to college and can't get used to the new routines, did I have autism, lose it, then gain it back? That's what you're suggesting.

4. Even if I am impaired, why should that require professional help? E.g., Amanda Baggs's cat is part of her support network. Is Fey a professional? If I can't talk, but I can type, that's an impairment in some environments, but doesn't require professional help, just a keyboard and other people to be willing to "listen" in the right way.

5. Functioning fluctuates on its own. I'd point out Amanda Baggs again, but maybe she's getting annoyed with all the attention. (Groupie much? Though I'm your biggest fan, actually, Callista. Okay, enough scaring you. Both of you, actually... but I should really stop now.) So, um... I have the condition of being a human being, rather than a creature who reproduces asexually. My functioning, therefore, fluctuates. Some days, this doesn't bother me at all. At other times, it can be messy and painful. Some people with this condition will also sometimes make fools of themselves when around other people with it. But not always. So suppose I get diagnosed with Humanity Disorder when I have my period one month. My period ends after a couple of days. There's no more mess, no more pain, no more trouble with my voice. Well, I guess we can't diagnose me anymore. (To go off topic, that's also my issue with diagnostic criteria. To me quibbling over criteria when someone is clearly autistic is like arguing that someone's not a woman because she doesn't have menstrual cramps. It happens. Even really big things, if you're just observing from the outside, might not be present. E.g., you could put "bleeds monthly" in the diagnostic criteria for being female, and exclude women on Lybrel, post-menopausal women, little girls, anorexics, athletes... And at the same time include, e.g., men who self-injure. I really should've stuck with just pointing out the existence of Amanda Baggs.)

6. How do you measure "impairment in functioning?"
i. By not measuring up to what NTs are supposed to do? But you might not want to, or might achieve the same goals in a different way.
ii. By not being able to do what you want to? But what happens if you're a slacker, or worse, if you give up on anything better?
iii. What about bad things NTs do that you don't?

7. What about self-knowledge?

8. What happens when we win and it can no longer involve an impairment in functioning any more than being unable to sew your own clothes? (Surely it's worth knowing whether or not you can sew, even if you don't need to. Surely it's worth knowing, to stretch an analogy I didn't want to make anyway, that a girl will reach puberty (unless her name is Ashley), even though she hasn't yet, and even though she might never have any given specific "symptom.")

9. What happens if it's an issue, but you can successfully hide it? Like... you don't like socializing, so you pretend to be mean, and nobody notices that you have trouble?


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18 Jul 2010, 2:59 am

DandelionFireworks should publish her posts.



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18 Jul 2010, 4:22 am

Impairment is a relatively fuzzy dividing line, yes. The point at which you can say "this person is definitely impaired" is probably when they need outside help (from technology to accommodations to assistance from another person) that isn't available to, or needed by, the average NT. But there are also people who merely require more effort, special strategies, or a certain environment to survive; and they are on the border of diagnosis. They may only be diagnosed when they are under particular stress or move into a less hospitable environment, and require outside help; after this point they generally retain the diagnosis unless it becomes evident that they would still no longer be impaired even in a less favorable environment and using the same amount of effort that NTs do. (This is why it is so common to see AS diagnosis in people who are entering a new phase of school, with its increased demands.)

A diagnosis isn't some magical statement that now you're part of the autistic in-group. It's a strategy used by the medical profession (including in this case psychologists, neurologists, and therapists) to identify a condition that requires something other than the usual resources that the average NT can access. If people are diagnosed who do not need help nor require special strategies, more effort, or a different environment, then the diagnosis loses its usefulness to the doctors.

That's not to say that non-diagnosable people cannot be neurologically autistic. There are quite a few who are; some lost a diagnosis in the past, and others are simply unimpaired with autistic traits. This group would be "subclinical" or "broader autism phenotype", and may identify as part of autistic culture because they have a great deal more in common with diagnosed autistics than they have with NTs. (It's also why I really want a "neurodiverse" option on the profiles... that, and for the non-autistic ADHD/dyslexic/bipolar/whatever people who come around here.) It's a little like the way people who use sign language but don't have any hearing loss may easily identify with Deaf culture (especially if they have family members who are Deaf and grew up with some variety of sign as their first language).

There are two definitions of autistic here. One is what I'm talking about--the diagnosis; the label used by doctors to identify a general category of symptoms with generally known features. One is what you're talking about--the cultural identity; the way of thinking and relating to people; the eccentricity and nerdiness; the personality style. That second kind covers not just diagnosable autism but its much wider penumbra.


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18 Jul 2010, 7:59 am

Callista wrote:
The new DSM does have categories for "subclinical" traits--that is, the group that cannot be diagnosed, but has autism-like traits, including people who have mild traits and people who used to be diagnosable but are no longer diagnosable. That is the group you're in if you have autistic traits and function fine in society. People in this group can be what I call "culturally autistic"--that is, people who have a similar cognitive style as diagnosed autistics, and similar experiences, sharing all but the need for diagnosis. The subclinical category is useful when treating people for something other than autism; for example, someone with dyslexia and subclinical autistic traits may respond differently to reading lessons than someone with dyslexia and subclinical ADHD traits...


Interesting. That's the first I've read of that, and it seems like a good idea.


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18 Jul 2010, 8:03 am

one-A-N wrote:
"Autism spectrum" is a bit like a "fracture": there is a world of difference between fracturing a small bone in your middle toe, and a spinal fracture or a fractured skull. One won't even get you an X-ray or time off work or a cast (I was told to use band-aids for my fractured middle toe); the other might put you in hospital in intensive care. But they are both fractures.


I got x-rays. But no cast (kinda hard to cast a toe), just buddy wrapped, and no time off work.) But, yeah, I'll take the broken middle toe over the spinal fracture or fractured skull. :)


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18 Jul 2010, 8:27 am

DandelionFireworks wrote:
But what right do I have to talk about a diagnosis I won't even have soon? Soon enough, I'll be NT.


No, you won't. NT stands for neurtotypical. That does not mean "anyone who doesn't qualify for an autism diagnosis. Not qualifying for a diagnosis doesn't magically make one's brain normal. There's a good number of people who aren't NT, but don't qualify for a diagnosis.


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18 Jul 2010, 11:45 am

Anbuend, thanks for posting Kanner's notes. I'd fit right in with that group. I feel like I've read a bit of my history, if you know what I mean. Where I came from.

As I fell asleep last night, I was also thinking that the DSM-V's proposed definitions of mild, moderate, and severe aren't AS bad as funtioning labels, because they clearly define where they're getting their label. The big problem is that, for example, I am mild in communicaion and moderate in behaviors. The other big problem is that my communication, especially, TOTALLY depends on the day. Still, they are slightly better than HFA and LFA.

Note: The DSM-V website took down the proposed definitions of their "mild, moderate, severe" stuff, so it might be that it's changing anyway thus making this a moot point. I don't know. Still something to think about.



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18 Jul 2010, 12:09 pm

I just wish if they were going to include mild, moderate, and severe, that they would do so in far more areas and with far more nuance than they do. I know people who would be in the mild or moderate range on all of the official areas, and yet in the severe range on things that are not mentioned. If they needed services, they would kind of be screwed. And I have a movement disorder that is finally beginning to affect even nonvoluntary repetitive movements, so apparently because I have a movement disorder I'm suddenly less severe? Huh? Weird.

And yeah I identify a lot with some of the people in the case studies. Unfortunately I also identify with parts of the followup studies, where some people (primarily the ones who were at some point put in institutions, and there's good reason for this since it happens to all kinds of people in institutions) lost a bunch of skills they previously had, lost speech and interaction skills, got overmedicated with Thorazine and similar drugs, and eventually had their IQs drop considerably. That happened to me as well (both as a result of institutional crap, and as a result of a progressive movement disorder), and I identify strongly with some of those descriptions.

I also identified with the girl who used writing to help with communication, and the boy (I can't remember if he was in the paper I described or another one) whose expressive abilities appeared ahead of his receptive language skills. That's a huge one for me. Also the girl who went around saying seemingly nonsensical sentences. When I put language on autopilot my output looks like one of those computer programs for spam that spits out grammatically correct but really weird-looking sentences.

There's another paper by Kanner where they found the people with the best outcomes out of about 100 people, and many of them were much like people on this board who identify as AS. That one is How far can autistic children go in matters of social adaptation? (that's a link to it). It's fascinating reading, especially for the seventies when it's assumed that these outcomes weren't known about:

Thomas G:

At 12 years of age, he was at the top of his class in the sixth grade. The school considered him "adjusted," though he was still looked upon as a "queer fellow." Thomas' marks were excellent. He spent one term each in the school's athletic association, art club, and newspaper, and helped the librarian after school. He also took on a central part in a demonstration during a folk dance. Teachers liked him because of his good academic performance: "He works slowly but what he turns in is excellent." Schoolmates neither accepted nor entirely rejected him. He was the butt of much teasing finding it best to ignore because, if he teased back, "it got worse."

After graduation from high school, Thomas got a Johns Hopkins University Scholarship, which was discontinued after 2 years because his marks were not good enough. He then enlisted in the military service. Because of the slowness of his responses, Thomas was after 5 months directed to undergo medical examination. While at the hospital, he suddenly had a grand mal seizure and received a medical discharge. Thomas managed to go back to evening school and earn his college diploma. He continued to experience seizures when neglecting to take his medication regularly.

Interests in astronomy and music provided much personal satisfaction and some social contact. Thomas was a scout leader in demand to teach astronomy and also play the piano. He belongs to a swimming and athletic club and likes to read about science and astronomy, but not fiction.

Among his several jobs was that of a file clerk at a Government agency for a period of five years. He changed this position for work in a military test center focused on electronics and science.

In 1969, the grandmother, now 83 years old, had to be placed in a nursing home. Due to negligence in taking medication, Thomas had another seizure and lost his job. Rather resourceful in rapidly securing other employment, he now works for a charitable organization. Thomas owns a house which he bought several years ago, drives his own car, and plays the piano and tape recorder when at home. He is not interested in girls: "They cost too much money."

Sally S:

Seen again at the Clinic on December 6, 1953, the girl was characterized by her mother as follows: "Since you saw her in 1943, Sally has learned to adjust socially. She is now in the eleventh grade. Her records show her depending too much on her memory instead of any power of reasoning." Sally spoke of herself as "a plugger," indicating that she put considerable pressure on herself in order to do well: "Up to last year, the fundamentals of learning have been easy because of my good memory but this year it is the interpretations, and this is difficult for me." Sally had the ambition to go to college but added: "I may be hitching my wagon to a star." About her relationship with schoolmates she said: "The girls are very nice and friendly. There are some points in which I am not close to them. I don't have the interest in boys that most girls of my age have." She expressed concern about her brother who was expelled from school because of drinking and misconduct and had a job at a gasoline station. Sally called him "a strong victim of adolescence — he needs real psychiatric help."

After finishing high school, Sally was successfully enrolled in a woman's college, graduating with a B average. She decided to go into nurses' training and tried to live up to the rules and regulations. Rotation through the different departments, prompted difficulties in adjustment at the beginning of a new service: "Maybe I was anxious to do too well." While on the obstetrical ward, Sally was asked by the dean to reconsider her plans. Having been told that 20 minutes were the usual time for breastfeeding, she entered the room at the exact moment and took the babies away without saying a word; there were many complaints from the mothers. Sally readily accepted the suggestion to take up laboratory work and has done well in this field since then. In 1968, the family moved to Chicago and the young woman secured a regular job in one of the hospitals in that city. She is appreciated "because of her excellent facility in chemistry." A psychiatrist consulted in August 1970 writes: "She struggled for a long time to expand her social life... Currently she has been dating a man for the past six months but it is clear that Sally is frightened by any intimacies. She has, with some encouragement, used her interest in music to establish herself in a church-affiliated singing group."

Edward F:

In 1970, the mother wrote that he had gotten along so much better than they had ever expected. Edward finished high school at 19 and wanted to go to college. She attributed this to the pressure he felt to do like the others in the family. Tests were arranged which showed him high on verbal ability and mediocre in performance. It was felt, however, that he could try. Edward went to a state university and took courses in horticulture. He could not master the chemistry, shifted to history and got his B.A. degree at the end of five years. He lived at the dormitory but made no lasting friends.

After graduation, Edward obtained a good horticultural position but he could not make the grade and was asked to leave. This event was very upsetting to him. For the last few years, he has been working at a government agricultural research station in a "blue collar capacity." Edward does not like this too well preferring to associate with "educated people." He has his own apartment and entertains himself with his Hi-fi set. He has bought a car with money that he has saved. He enjoys an active social life, belonging to hiking clubs and he has led hikes. His knowledge of plants and wild life brings him respect. He has begun to date girls. He comes home on weekends when he has time, and he is very welcome.

The mother adds: "We could, of course, write volumes on all the special things we had to do for Edward and with Edward at each stage of his life — but at this time he is completely independent and self-sufficient. I do believe that he enjoys life."

Clarence B:


Clarence graduated from high school in June, 1958, with excellent marks and superior achievement test scores. After spending the summer with his parents, he was admitted to a college in Illinois, where he received his B.A. degree in 1962. While there, he "socialized" with a girl for a while. Going then to a college in Massachusetts on a scholarship, he felt isolated, and went home to write his thesis. After obtaining his Master's Degree in economics, he studied accounting at his home state university. Clarence got a job with the state planning office and promptly decided to study planning; he did everything required for another Master's Degree except for the thesis.

He might have done well at the job he obtained if it had not been for the fact that he was given a supervisory position. This was too much for him and he was dismissed in October, 1970. For a year he remained idle, for a time having a newspaper route. Finally, he applied for a job more in keeping with his education and is now employed as an accountant, at $7,500 a year. Clarence gets along well now and has his own apartment. He obsessively tries to make social contacts. "He is awkward socially but can make a superficial adjustment," states a recent report. He senses embarrassing situations to the point of asking: "What am I doing wrong"? Although he dated a girl, she "broke off" after about nine months. Clarence feels that he ought to get married but that he "can't waste money on a girl who isn't serious." He likes driving a car and, as a hobby, collects time tables to maintain his interest in trains.

One sister has a Master's degree in education, the other sister in the history of art. Both are married; one has four children whom Clarence likes to play with; "he gets on the floor and they crawl all over him," the sister says.

Henry C:

In our usual efforts to follow the destinies of our patients, we corresponded with the father, the foster parents, and a financial guardian who for a time looked after a small sum left by Henry's mother and who, having moved to India, wrote us from there on October 4, 1971:

...I first saw Henry at 2 or 3 years when my wife and I visited his parents and played bridge in their apartment. He was somewhat like a wild animal running back and forth across the living room until he became exhausted. The next time I saw him, he was 15 and we had a very interesting conversation. I felt at that particular time that he appeared to be quite normal. His letters also indicated to me that he was being fairly well adjusted. I thought that it was quite remarkable that he was pretty much on his own since then.
We wrote to Henry himself when we learned of his address. Early in January 1972, he sent us a lengthy autobiographic letter; regretfully, we cannot reproduce it word for word but the following is an abstract:

On June 29, 1962, at 19� years of age, he entered the armed services. Upon completion of basic training, he was assigned to one of the intelligence services, received a top security clearance, took courses until December 6, 1962 (the nature of which he could not disclose because they were of a "highly confidential nature"), and received an honorable discharge on January 18, 1963. Then follows a list of various jobs held in California and later in Pennsylvania, (six altogether) mostly as a "general office worker"; at present he is "chief inventory controller in a Motion Picture Laboratory" where he has received "several healthy pay increases." After drifting around, he feels that "perhaps at last, I have found a place worthy of my talent for settling down in." All six jobs were described in great detail, giving dates, description of responsibilities, names and telephone numbers of supervisors, and reasons for leaving the jobs. Generally speaking, "I have never been dismissed from any place of employment because of any working habits or lack of working habits."

The letter addressed "To Whom It May Concern," starts as follows:

I am writing this resume with the intention of giving any person who would wish it a lucid account of my life, educational and working background, and experiences. I am 6 feet tall, weigh 145 pounds, have medium brown hair and hazel blue eyes. I am in excellent health with no history of any severe illnesses or injuries. I have an automobile and a permanent residence. I am also draft exempt and have no criminal record of any kind.
Elsewhere he writes:

As for my future, I have absolutely no worries whatsoever. I live each day as though it were my last, and let the devil take tomorrow... I am 28 years old and single (though several girls I know had hoped to change that) with no desire to get tied down for a good long time... I neither smoke nor drink but I do have an uncontrollable urge to gamble. (We all have to have a few bad habits.)

The letter is concluded as follows:

For as long as I live, I shall always remember you, Dr. Kanner, and how you have opened many doors for me. I cannot thank you enough for the limitless kindness you have shown me while rekindling the spark of living within me that had nearly died so very long ago.

George W:

George's mother took him out of school when he was in the eleventh grade so that he could concentrate on music. He had played violin in a number of youth orchestras and took courses at a prominent Conservatory. Concerned about not getting a high school diploma, George has, in recent years, spent much of his time subscribing to correspondence courses. He is especially interested in languages, having learned Spanish in school, teaching himself French, and having "a working knowledge" of Italian. At present George is employed as a page in a library and is also in charge of mailing books (mostly to foreign countries).

George lives with his parents. He is helpful with chores at home (to make things easier for his mother who describes him as "dependable") but has no friends and "girls are not interested in him." His major preoccupation now is an overconcern about pleasing people: "He is not relaxed and afraid of doing wrong."

Walter P:

Walter attended a boarding school for exceptional children from 1956 to 1962, coming home on weekends, and then lived with her (his father had died). For 2 years, he attended a day school and then worked for a short time in a sheltered workshop. "Since June 1968, he has worked at a small restaurant as a dishwasher and bus boy, earning $1.25 an hour. He seems to enjoy his work, has pleased his employers, and has never missed a day. He is a handsome young man, takes complete care of himself and of his room, and is neat and clean at all times. There are no behavior problems. He helps with the housework and takes care of the yard, including complete care of the power mower. His main difficulty always is in communication. What he says, he says well and in a fairly clear manner, but there is no voluntary conversation. Walter talks enough to make his wishes known, will answer the phone and tell me who is calling, but when I am not home, unless I ask him, he will not tell me if someone called.

Bernard S:

The father gave a follow-up report when Bernard was 20 years old:

He had graduated from high school at 19 and was struggling with junior college in a general course. His marks had been mediocre. He is not the studying type, seeking a job and a simple uncomplicated life. He lost 2 years of school in shifting around. One year he spent in a "progressive" boarding school, but that proved to be "more of a hippie colony" and his work was poor. The mother died while he was there and then he did not want to go back. After the paternal aunt who had cared for him as a small child came to live with them following her husband's death. Bernard showed marked improvement.
The father remarried in 1968 and Bernard got along well with his stepmother. He had had "no real psychiatric treatment."

Bernard is "backward and shy but that is the way he is." He did approach a girl once for a date in a very negative manner. He hates clothes, drives a car, does best if not pressured and helped his father in the drug store (he did not wait on customers but would fill the shelves). His chief interest is the streetcar museum. He is a member of a club that goes there on Sundays, laying track, painting cars, etc. They take trips. He used to like history, is up on world politics, and reads the newspapers.

Fred G:

When tested at 16 years, he was found to have a full scale WISC IQ of 118 (verbal 126 and performance 104). His arithmetic score was at the ceiling with quick answers on the tests, and comprehension, similarities and rote memory were rated as being of high average. On the Rorschach, he showed "sharp alterations between impulsivity and repression" and "a struggle between feelings of relationship and isolation."

At 23 years of age, Fred is doing well at a university where he has a B plus average and is gifted in mathematics. He has adjusted well in college life and his schoolmates respect his academic prowess. The young man has sloughed off his obsessive preoccupations. For instance, he dresses well but is not as compulsive about clothes as he used to be.

Though described as "awkward and intellectual," he tries, at least on the surface, to take part in the concerns which he knows should be those for his age, even "experimenting" once with a double date arrangement (not repeated). Fred drives a car skillfully, with full knowledge of all the parts, and in his spare time has done some composing and built a telescope.

Until his first year in College, Fred had always lived with his parents. After some hesitation, particularly by the father, they supported his decision to move to a dormitory.

***

Also, here's a Follow-up study of eleven autistic children originally reported in 1943 (link). I won't quote everything here, but two of them went on to be independent by most people's standards, many of the rest ending up in institutions and doing quite badly by typical standards (Kanner blames that, rightly, on the institution for the most part). Many of the ones who went to institutions lost a lot of previous skills, including one girl who could make fluent conversation before she went there but ended up barely able to talk. Even the ones in institutions, however, usually participated in activities other than rocking and headbanging, were able to take care of themselves, etc. Only one headbanged at all, in fact (and she had done really well attending a private school before she was institutionalized, unless I'm mixing her up with the other girl). Many of them had the same sort of IQ drop that I experienced.

What's fascinating reading about all of these people, though, is that even the ones who did the least well by typical standards, generally don't fit the stereotype people have about autistic people's abilities, and few to none of them in their lives taken as a whole, meet what people today assume that autistic people were considered to be like back then. And they are, as you said, quite easy to identify with in a lot of ways, for modern autistic people, including modern people diagnosed with AS.


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18 Jul 2010, 12:15 pm

I don't get why this is an issue? Autism is autism and Asperger's is Autism, so, logically, no identity is going to be lost.



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18 Jul 2010, 7:46 pm

Indeed, and I have some fluoro pictures of a broken left ring finger. (Hey, I need that finger; it hits the S key, plus a great many piano keys, despite being the weakest finger.)

I don't really care about the semantics, but I hate the new criteria even more than I hate the old ones.

Why should services be based on diagnosis? Why shouldn't (for instance) an NT who has sensory issues be able to have special accommodations? Then we can all know what we are withotu worrying about stupid concerns like what kind of help we need. Obviously, we're not going to eliminate the diagnosis, any more than the ultimate goal of feminism should involve stripping the language of the words "woman" and "man." (Aargh, stop it, wrong analogy! I really want to compare this to something else.) But we are agreed that saying "autistic" doesn't tell you which services you need (if any, because there's always just working really hard), so why should that particular name be a requirement for getting what you need if it doesn't even explain what that is? If I'm autistic I might need:
Full-time support staff to change diapers, feed me, etc.
OR
Someone to clean my house and remind me to go to the bathroom and go to sleep before my body gives out (but when my parents do that, I'm not considered impaired, and when my family hires people to clean house it's not seen that way either).
OR
A sign-language interpreter and help paying for living quarters in a quiet neighborhood.
OR
A quiet room to take tests and some finger-fidgets.
OR
A little extra patience.

Or any number of other reasonable accommodations, plenty of which are naturally present in some environments.

I mean... alright. Here's a hypothetical autistic (Aspie, Pervie, I don't care). He has trouble with executive function, which in this case manifests as needing a reminder to make transitions and difficulty creating a scheme by which to organize himself. He has trouble with small-talk, but is intensely loyal and honest. He presents with normal speech, and intense but very stable special interests. He has learned not to monologue. He's fine with authority, but has sensory issues, which present as a dislike of light touch and occasional (<3 times per year) sensory overload. He requires routine, and prefers to wear the same outfit and do the same thing every day.

This guy will probably do great if that special interest is one or more branches of the military and he's physically fit (assuming he has no gross motor impairments, which aren't an absolute requirement). This guy will probably not do well at all if he tries to be a freelance writer. But if the soldier is really no less autistic than the writer (and if they're the same person that must be the case), why should he live his life believing he's something he's not? Just because he can??

I just hate diagnosis, but we're using it as "a statement that you're part of the autistic in-group" anyway, so why not actually include all of us?

Deaf is different. If you're hearing, but are part of deaf culture, yes, you may have a lot in common with deaf people, maybe more than you have in common with hearing people, but you have the perceptions and processing of a hearing person. An equivalent would be an NT raised among autistics, whose finely-tuned mimicking software caused him or her to pick up certain behaviors.


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18 Jul 2010, 9:58 pm

DandelionFireworks wrote:
Why should services be based on diagnosis? Why shouldn't (for instance) an NT who has sensory issues be able to have special accommodations? Then we can all know what we are withotu worrying about stupid concerns like what kind of help we need.
Because there's no such thing as "an NT with sensory issues". If someone has sensory issues to the degree that he needs accommodations, then he's not NT. He's got a disability just like the guy with autism does (it's called "sensory integration disorder"), and has just as much right to accommodations, however good he is at language and socializing.

Quote:
Deaf is different. If you're hearing, but are part of deaf culture, yes, you may have a lot in common with deaf people, maybe more than you have in common with hearing people, but you have the perceptions and processing of a hearing person. An equivalent would be an NT raised among autistics, whose finely-tuned mimicking software caused him or her to pick up certain behaviors.
I never said it was a perfect analogy; it's just an example of a community based around a disability that includes both disabled and non-disabled members, just as the autism community does... People with the autistic cognitive style but no disability can't be diagnosed because a diagnosis is a statement that, "There is a condition here that causes impairment for someone in our society, in an average environment, which the average person is expected to navigate just fine." And someone who is nerdy and has more in common with autistics than NTs, but doesn't have any impairment, doesn't need a diagnosis. He can identify as part of autistic culture; he can call himself a spectrum cousin or BAP or subclinical autistic; but he shouldn't be diagnosed by a professional because he has no impairment.


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18 Jul 2010, 11:25 pm

Side note: Is anyone sure what they mean by "unusual sensory behaviors"? Someone made a comment about sensory overload not being a "behavior," but when i first read it i was thinking more along the lines of doing behaviors that stimulate your senses(for example: sniffing things, seeking out deep pressure, rubbing certain fabrics excessively, etc..).. or even behaviors related to sensory sensitivities(such as only wearing certain clothing, covering ears, etc.). So, i think that's what they mean, but now i'm not sure.



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19 Jul 2010, 1:59 am

Is that the only part you don't understand? I don't understand... any of it, really. It doesn't seem unusual to me to seek out what is pleasant to sense and avoid what isn't.


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