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Brain - Neuroscience Research Team.

Tuesday, September 18, 2007

Autism -Between Science and Every Day Living

Posted by brain - research neuroscience group

In a post on Dr. Michael Merzenich's blog, a debate was born regarding the attitude toward autism. An emotional approach and a clear scientific point of view seems to be like the cat and the mouse. We (in some posts), Claudiu in others and Dan in other comments sustain
a somehow the scientific opinion on this "other way of being". The initial post was about video/computer game addiction and autism. Of course, this manner -scientifical - was criticised by those with high functional autism or by some parents. Dan, told about those who disagree with the scientific point of view that "it is unclear what you are trying to do, and your comments appear to arise from your emotion and psychology rather than from a coherent conceptual scheme that has a productive intellectual purpose." All the comments that wore based more on observations or on research were considered full of lack of empathy for those with autism. But why this reaction from those who have autism or from parents??. The fact that a researcher, a neurologist or a psychiatrist or some medical students etc are giving their time searching for the mechanism of this disease isn't a clue of their interest and passion for the condition of those with autism? isn't this the biggest proof of emotion - doing something, not just speaking about autism driven by emotions?! Also, Dan, (a very intelligent person in our opinion) sad "Again I do think what underlies each of your remarks is a rival conception of autism, one that is fundamentally different than the typical scientific/medical conception that stems from the DSM criteria." Your remarks appear to me as superficial aspects of this larger conception, and without providing a simple discussion of your rival conception, your comments appear as superficial, often unclear, and arising from emotion (including those with autism who have posted here), and as such, as I’ve noticed above, lack explanation, are disorganized, unclear, personally oriented, etc. This is the nature of emotional arguments."
Of course a scientific approach sometime seems to be cold, or it supresses the sensation of partnership and sometimes don'tleave space for too much talk in a "positive regard". Claudiu was saying that sometimes a scientific discussion (even an internet one) can be misinterpreted if the asistance is composed by ill people (especially when is about mental disorders ex: depression, autism etc). Sometimes they think that they are judged as good or bad. so....; But he was asking to - what about the right for a clear information access, which they are asking for many, many times.
More, it is interesting (especially for those who are searching the human mind) what's with this
opinion. In general, when a patient finds out that he has a disease, he has some mental stages in relation with the disease: denyal, anger......acceptance. All of this targeting the adherence and the good mood/ stress/ depression of a patient. where is situated an autistic when he builds a parallel opinion on his suffering?! (this question is apliable to the parent too). So, as Dan was saying "each of your remarks (opposite to scientific results) is a rival conception of autism, one that is fundamentally different than the typical scientific/medical conception that stems from the DSM criteria."
We are asking where this attitude can be placed : denyal by building a 'soft" vision about autism, or it is the acceptance which was reached by making a different opinion for living , after seeing (and accepting) the medical opinion. Something like... ok with the medicine, i agree, but this seems warmer.....Is the adherence affected?
Brain - neuroscience research team

If you are talking in medical - research terms - are you categorised as cold blooded?! but patients and the general opinion are asking for research result...... so....... it may be something like 'where and with who are you talking to'. It is possible to be linked to the self esteem of the patient in case of the autism, but if you are talking with a patient with some bacterial infection about what's happening in his body his self esteem will be hurt? So, autism means team work...
but this team sometimes is not made in practice by the patient, researchers, parents and physician (whatever is his speciality). I belive there are some stages: at a young age, the parents are going to hospitals with theis young children, then a behavioraly programme is initiate in parallel with the hospital survey. so, there is no denyal here, and all the medical oppinions are accepted. Futher, the child is growing, and he is a high functional autistic person. Here comes the switch...medical opinions are considered a stigmata, and the reality becomes another - "a special way of beeing". Is this a return to denyal or acceptance? Of course, to reload the example with the patient suffering from an infection - after everything is ok, he doesn't want to be seen as a carrier of a bacteria, but is the same in autism?! The special programs for autism are preparing people with this suffering for this oppinion switch, or they are considering it?!

Here are some comments by me on autism and computer game addiction (which were the start of this interesting debate):
1) "It is a world of “full control”, where a child can have the control, and the interaction with other characters from the game will not have any consequences on him (on the child) . The “interaction” between his game character (or army, etc etc) - in fact his virtual representation in his mind - and the other characters from the game is not harmful, and if an inconvenience appears (as sometime in the real world happens) it will not require a cognitive effort, a push on “reset” button is enough. In the real world - No! The character is his representation (sometimes children say : he shoot me! or what a jump I made ” but he reffers to him, even though the event belongs to the virtual character). It is about full control with no consequence, and due to the fat that a child finds himself in a character, for a moment he reach more self -esteem because of the properties of the virtual character. For a child with autism: emotions are less present (or expressed) - and a game will not require an emotional approach (as the care for a pet, or the emotions involved in the relation with the parents). A game will not require from him to express a gentle touch. A parent does. The level of aggresion is higher in many children with autism - the level of agression is higher in games, in books or in a social interaction event - No. It seems that they have a problem in complex stimuli perception: a game will provide clear defined character (by face structure for example of by the whole morphology - a monster/a witch/a human) with clear intentions - real children colleagues - not quite. Or, in a game, a group of personages have the same design, so they will be treated as a whole, a real word situation means different responses based on different characters which must be indentified (and the face is a complex stimulus, but alike (similar ) with 10 or 15 around him at a moment)."

2) just some few articles, with a scientific aproach:

Carolien Rieffe et al 2006
Michael L. Spezio et al 2006
lisabeth Hill et al 2006
David Hessl et al 2006
D. Ben Shalom et al 2006
Sandy Vickerstaff et al 2005
Anne-Marie Daoust et al 2007
Eve Müller1 et al 2006
Rieffe C et al 2000
Rieffe, Carolien 2000
and also read about depression in autism - and the effect of the depression
” Findings suggest that children with autism have difficulties identifying their own emotions and less developed emotion concepts ”

Poustka F. 2007
Montes G, Halterman JS., 2007
Jensen PS et al 2007
Lindsay RL et al 2006
Brune CW et al 2006
Reinblatt SP et al 2006
McKee SA et al 2007
Dominick KC, et al 2007

also there many, many, many other GREAT scientists who are interested in this field…i cite here just the ones I read recently. All of them sustain a scientific approach, that sometimes is interpreted as "hurting the liberty of living', as someone said.
So, scientific world - autistic persons - in a debate? ethics,dedication, passion, action, emotions, "politicaly correct", cold blooded, supportive or just business?!?!
C.B; L.S.

15 comments:

Dan said...

At post 56 at Dr. Merzenich's article, the person wrote:

"… you accuse Tito of benefiting from the scientists, but Tito’s first book about sensory experience was written when he was between 8-11 years old, before he had ever met any scientist. So why are you making such accusations?"

It would be interesting to hear more about this from Tito. Also, which book?
If would be helpful if he could discuss or list some of the main points he makes in his book regarding his “sensory experience”, and, especially, what he bases were for his descriptions.
It’s my inclination, from reading some of his writing, and watching some television interviews and other video interviews of him, that he, even at that age, was benefited greatly by the thought, observations, descriptions, and explanations of Donna Williams, which of course is alright, but which, also of course, should be made clear, as it is always important to provide the sources you have benefited from, and exactly how you have benefited from them.
As Tito mentions above, he and his mother were very active in learning in a wide variety of different disciplines, and from a very early age … he also comments that in 2001 (before his first book?) he was active in researching and learning about autism with his mother, which is the time I believe they both studied some of Donna William’s books.
Tito mentions in his last post that his learning of science wasn’t from the “lab scientists” but rather …
“Before coming to the US, in 2001 … I did my home work before coming to the United States. I began going to several British Library branches in India to get the required education so that when I am facing the tests [lab tests] I understand what is going on . Some books were there at home too as mother started reading them when I got diagnosed with Autism to understand me. We have books on Psychology too.”
This is also to benefit from scientists, not the lab scientists worked with, but the scientists who wrote the works that were read and learned from. Same thing.

Anyway, reading about Williams, Grandin, Tito, etc, about their accounts of their sensory experiences, has often been confusing, as there does not seem to be a clear account of what each person contributed to the discipline of autism study, the bases for their contributions (to what extent the descriptions are their own, to what extent they were benefited from reading science and/or discussing with their doctors and scientists, to what extent they have been influenced if at all by others with autism and their descriptions), whose ideas and descriptions are whose, who is the originator of certain descriptions and ideas, etc.

I was hoping this blog would be more actively run by Dr. Merzenich and also hopefully many at the Keck Center at UC-San Francisco (which is often ranked at the US’s best neuroscience center). I didn’t expect to encounter this kind of discussion, but decided to proceed anyway, at the start of the posts to clarify and expand on a important comment made by Dr. Merzenich, which has considerable basis (which I discussed at length from my perspective, but which Dr. Merzenich and others could clarify and expand much better than I). The quality of the above discussion largely reminds me of some discussions typical at the first year student in college, or senior level in high school. Moving forward on this blog, I think it would be more useful for me to formulate the underlying views of others, if I can, based on the disorganized thought fragments and unclear arguments they provide. In particular, I have a fairly full competing conception of autism formulated based on the scattered pieces of notions of Amanda and Tito, and others. I think the conception underlying their statements is fundamentally different than, and a dramatic objection to, the current conception as based on the DSM criteria.
I made a few requests for the others to provide this discussion, which would reveal their underlying system of ideas, and in this way we would be clearer about what their ideas are. My impression, as we have proceeded in this discussion, is that they do not have a clear system of ideas, but rather have what I mentioned above, along with a considerable about of emotional utterances, that is, criticisms, objections, etc, that were not explained in even a minimal way. An objection without explanation is emotion, and as such is meaningless conceptually. For example, if the extent of the objection is “I disagree with X and Y, it was inappropriate for X to do Y” and that is all that is stated. This is the beginning of the discussion, not the end.

Dan said...

I re-read your view on what occurs with autistic people when playing video games. Interesting. I also wonder what Dr. Merzenich's view is, and am surprised he has let his article-comments go on for so long without either taking part in the discussion, or clarifying and expanding on what he briefly stated at the end of his article (which I believe is a valuable point).

I'd like to hear more about and think more about why some (most?) autistic people can do certain tasks fairly well.
Besides the video game example, I've met many with what appeared to be rather significant Aspergers who were extremely talented and successful in academics, writing, etc, but who were impoverished with social relationships and with engaging with the outside environment (both the social and non-social environment/stimuli). The appeared to largely live in their world of ideas, and actually often stated that they "love ideas".
So extending Dr. Merzenich's comment to this example, is the world of ideas not a real world? I think when it dominates one's life, to the exclusion of everything else, and, if engagement with people and the environment is essentially nonexistent, then this would seem to be the case. But yet, this world of ideas has been important in society. It's not the ideas that are not real worlds, but the living of a life of ideas? The ideas are important, valuable, useful.
Anyway, what happens such that an Asperger's person can be so talented conceptually, yet so impoverished in basic interpersonal and intrapersonal ways. You mention of the difficulty with complex stimuli perception is interesting and I'd like to hear more about this if you have time. There is essentially no stimuli involved in reading books, and writing, and thinking. Only the words, and the ideas, for the most part.

Dan said...

Your thoughts on the nature of some of the discussion at Merzenich's blog under that article are interesting and reasonable. I tried to be neutral as I could about this and limit myself to simply explicating Merzenich's initial important yet brief comment to the criticizing person, but this simply fueled more criticisms of a similar nature, which actually I wouldn't consider important criticisms, but which I still engaged with.

I think my last post there may create some tension between Tito, others, and I, which I'm not interested in, but have found that what is at stake seems to be more important than any tension that might arise. I hope my questions are reasonable, and my intentions are good I think.

TCB said...

I read the posts, Tito's recent post 61# I believe, with his other posts, suggests a few things that are along the lines of what your suggest.

He seems to have a grandeur and or grandeur-paranoia problem: he thinks he controls what others write in many ways (see his last post 61 and many others). He also thinks he is a superior being as someone wrote. The thinks he can control people and what they do, playing games, as he says, with them, and then he thanks them for playing his game, and says "good job" to them. He seems to view himself as a kind of diety that controls people's actions and thoughts at his will. And/or a high paternalist figure in the same way.
He ignores all comments asking him to explain things, to explain what he means. And so on. He seems to believe he doesn't have to, if he wishes not, to explain himself or respond to any questions or requests or criticisms.
He seems to live in his own world indeed. Highly self-centered, and he thinks of his self as of immense superiority to others.
He rejects and denounces science and scientists. Especially those he worked with. Yet his written language and thought is at the core based on science.
He is a lot like Donna Williams. She is greatly selfcentered and pretentious. Thinks of herself as a paternal figure to dispense great advice to others. She rejects ALL criticism and ignores it or deletes it from her blog.
She can't accept thinking twice about the things she reguritates - tons of scientific diagnoses and other things she merely adopted as her own.

Anne said...

Dan writes:

"I tried to be neutral as I could about this and limit myself to simply explicating Merzenich's initial important yet brief comment to the criticizing person, but this simply fueled more criticisms of a similar nature, which actually I wouldn't consider important criticisms, but which I still engaged with."

Gee, thanks! Dr. M did send me a private reply regarding my initial post and his intent in saying what he said. His reply was three sentences long.

Anyhow, I did take the time to try to answer some of your questions, but my comment didn't post properly, so I'm reproducing it below. (I know you'll be tempted to give me a bad grade, but remember, I am not a trained scientist.)
=======================


Tito, I'm laughing out loud, you are such a brat. And sarcastic, too.(Oops, no, you can't be ... you're autistic!)

Dan, take it easy. I'll bet even Fred Volkmar wouldn't be able to dash off an answer to your question about the theoretical underpinnings of his conception of autism and how they differ from those set forth in the DSM-IV-TR on a moment's notice! Let alone me! Anyhow, the DSM doesn't define autism, it sets out diagnostic criteria. It changes from time to time. I will be interested in seeing what Volkmar's group comes up with for the DSM-V.

There has been some recent research and commentary raising questions about commonly held views on autistic people's inability to read social cues, their lack of social reciprocity, their degree of cognitive deficit, and the idea that they lack "theory of mind." While there is certainly a difference in how autistic people communicate, interact socially, and in their body language, it is possible that the conclusions we have drawn from observing these differences are flawed. For one thing, the DSM-IV-TR contains to mention of perceptual or sensory differences. It is possible that communication problems or perceptual/sensory issues account for some of the behavior that has been interpreted as evidence of lack of social reciprocity and the inability to read social cues. It is also possible that communication difficulties have led scientists to underestimate both the intelligence of autistic people and their ability to comprehend the existence of other minds.

See, for example:

Gernsbacher, M. A. (2006). Toward a behavior of reciprocity. Journal of Developmental Processes, 1, 139-152.

Abstract: It is frequently believed that autism is characterized by a lack of social or emotional reciprocity. In this article, I question that assumption by demonstrating how many professionals—researchers and clinicians—and likewise many parents, have neglected the true meaning of reciprocity. Reciprocity is “a relation of mutual dependence or action or influence,” or “a mode of exchange in which transactions take place between individuals who are symmetrically placed.” Assumptions by clinicians and researchers suggest that they have forgotten that reciprocity needs to be mutual and symmetrical—that reciprocity is a two-way street. Research is reviewed to illustrate that when professionals, peers, and parents are taught to act reciprocally, autistic children become more responsive. In one randomized clinical trial of “reciprocity training” to parents, their autistic children’s language developed rapidly and their social engagement increased markedly. Other demonstrations of how parents and professionals can increase their behavior of reciprocity are provided.

A pdf of the paper can be found here:
http://psych.wisc.edu/lang/pdf/Gernsbacher_reciprocity.pdf

Dr Courtenay Norbury, from Royal Holloway, University of London and the University of Oxford, recently presented a paper on her eye tracking study. An earlier study conducted by Ami Klin at Yale on two subjects, one autistic and one not, found that the autistic subject tended to look at mouths or extraneous objects when the non-autistic people looked at eyes. Both studies had their subjects watch a movie. Dr. Norbert's study, using a larger group of subjects and a different movie, got a different result. They found no significant difference in the time that autistic people with language difficulties, autistic subjects without additional language difficulties, and non-autistic subjects spent looking at eyes. In her press paper, Dr. Norbert says:

"Our work suggests that individuals with autism, like their typically developing peers, can and do attend to important social cues such as the eyes when viewing familiar social scenes. ... We have also shown significant variation in ‘typical’ viewing behaviour, raising very interesting questions about social deficit theories of autism and highlighting the complexity of the disorder."

You can read about it on the British Association for the Advancement of Science site here:
http://www.the-ba.net/the-ba/PressOffice/PressReleases/_Norbury_BAPressRelease06Sept07.htm


Jemel B, Mottron L, Dawson M., "Impaired face processing in autism: fact or artifact?"
J Autism Dev Disord. 2006 Jan;36(1):91-106.

Abstract: Within the last 10 years, there has been an upsurge of interest in face processing abilities in autism which has generated a proliferation of new empirical demonstrations employing a variety of measuring techniques. Observably atypical social behaviors early in the development of children with autism have led to the contention that autism is a condition where the processing of social information, particularly faces, is impaired. While several empirical sources of evidence lend support to this hypothesis, others suggest that there are conditions under which autistic individuals do not differ from typically developing persons. The present paper reviews this bulk of empirical evidence, and concludes that the versatility and abilities of face processing in persons with autism have been underestimated.

PMID: 16477517 [PubMed - indexed for MEDLINE]

At the 2006 Annual Meeting of the American Association for the Advancement of Science (AAAS), Dr. Gernsbacher presented a paper regarding the widely-believed idea that autistic people lack theory of mind:

"The belief that autistic children lack a sense of both their own minds and those of others emerged about 20 years ago, becoming a seemingly undisputed tenet in the literature since then, says Gernsbacher.

When the psychologist began delving into the question, however, she found that scientists usually ascertain how well individuals perceive the mind with tasks that require a relatively sophisticated level of linguistic ability. Since a common diagnostic criteria for autism is the impairment of communication skills, Gernsbacher says it's not surprising that most autistic children don't fare well on such theory-of-mind tests."

http://cognews.com/1140399802/index_html

Dawson M, Soulières I, Gernsbacher MA, Mottron L., "The level and nature of autistic intelligence," Psychol Sci. 2007 Aug;18(8):657-62."

Abstract: "Autistics are presumed to be characterized by cognitive impairment, and their cognitive strengths (e.g., in Block Design performance) are frequently interpreted as low-level by-products of high-level deficits, not as direct manifestations of intelligence. Recent attempts to identify the neuroanatomical and neurofunctional signature of autism have been positioned on this universal, but untested, assumption. We therefore assessed a broad sample of 38 autistic children on the preeminent test of fluid intelligence, Raven's Progressive Matrices. Their scores were, on average, 30 percentile points, and in some cases more than 70 percentile points, higher than their scores on the Wechsler scales of intelligence. Typically developing control children showed no such discrepancy, and a similar contrast was observed when a sample of autistic adults was compared with a sample of nonautistic adults. We conclude that intelligence has been underestimated in autistics."

PMID: 17680932 [PubMed - in process]

In the above paper, communication problems were reduced by using the Raven's Progressive Matrices test, resulting in higher scores for autistic subjects, but not non-autistic subjects, compared to their scores on the Wechsler.

Information like this raises the issue of whether we are properly interpreting observed behavior and drawing the right conclusions.
Let's take as a hypothetical example the observation that an autistic guy in a room crowded with people covers his ears. Informed by our belief about his social deficits, we might conclude that this is a manifestation of a desire to avoid other people. However, as was concluded in a nice little paper presented at the latest IMFAR conference, ear covering may instead be an attempt to cope with sensory differences.
Y. S. Bonneh, A. Popple, D. Howitt, Y. Adini, "Why do they suddenly cover their ears?"

I think we have to question the degree to which the emotional and social abilities of autistic people are "impoverished." This is not a matter of political correctness or warm-fuzziness, either. It is commonly believed that social connectedness and emotions are what make us human. To underestimate those characteristics in autistic people leads to the conclusion that they are not really, or fully, human. This dehumanization has real world consequences for autistic people in the education and other sevices they receive and how they are treated in institutions, in the workplace, and generally in society. You might enjoy Amanda's video, "Being an Unperson," which you can watch on YouTube here:
http://youtube.com/watch?v=4c5_3wqZ3Lk

Anne said...

TCB - Either that or he's being a brat.

Dan said...

"Anne" (Ariella) you mainly provide quotes of others works, rather than your own interpretation and thought. What thought you do provide is, as your posts at Merzenich's blog, superficial, fairly careless, disorganized, and quite biased (arising from your needs rather than a serious consideration of the basic issues).

Autism is, factually, a condition of pervasive and profound limitations. As to the, exact, extent of these limitations, the issue at this and Merzenich's blog is simply about the general limitations.

Autistic and Aspergers people are profoundly and pervasively limited in fundamental ways. Fundamental, basic, core ways. Communication, emotion, behavior. And I'd add, the self, personality, etc. It is a devastating condition. You make considerable effort to ignore and try to explain this away in various ways, likely arising from your own psychology, that is, your need to conceive of yourself (as someone with rather significant and obvious Aspergers in my view) in a certain way, as well as your son and needing to conceive of him in a certain way.

You don't focus on, and try to avoid, the general aspects of the discussion. Generality always misses some things, but overall it is more important. Without generality, medicine and science would be of very poor quality -- conditions would be overlooked, not understood, etc. Parasitically using the specifics to attack the generality is to avoid the force and importance of the primary issues at stake.

You make considerable effort to try to deny and ignore the general limitations of ASD persons, you avoid the primary issues.

At Merzenich's blog, as I discussed, you re-conceive of certain aspects of autism, such as the emotional aspect, in such a way that neglects to understand the seriousness of what is happening with the condition. You are consistently fairly negligent conceptually, arising likely from your own psychology. It is of little use privately and publically to ignore, deny, and re-conceive of the basic aspects of the condition that are adverse. Again I think you have a rival conception of autism underlying your view, but which you have not explicated in any way ... you seem to dance around it and the common conception, in a superficial and careless way.

Often you write in your above post that the observed symptoms of those with autism may, actually, arise from the underlying sensory symptoms, and as such, as you say, "Information like this raises the issue of whether we are properly interpreting observed behavior and drawing the right conclusions."

Here you are pointing to a possible cause of the observed behavior. This doesn't change the reality of the behavior, the limitations, and what is observed. X could cause limitation Y, or A could cause limitation Y, but limitation Y, regardless, is still present. The cause is important, but the limitation is still a reality. Yes identifying the cause can entail a different understanding of the limitation, but the limitation is still there.

Lastly, your wrote:
"I think we have to question the degree to which the emotional and social abilities of autistic people are "impoverished." This is not a matter of political correctness or warm-fuzziness, either. It is commonly believed that social connectedness and emotions are what make us human. To underestimate those characteristics in autistic people leads to the conclusion that they are not really, or fully, human."

This view seems to be a psychological one. Here you seem to be pointing to the underlying view that we should reconceive of autism in such a way that we can conceive of those with autism/Aspergers as not having pervasive and profound limitations. Again you have never explicated your underlying conception of autism, and never contrasted it with the general conception ... you merely avoid this issue with superficial and parasitic objections to the important generality of the discussion.

Secondly, I never said or implied that autistic people are, themselves, impoverished. Your interpretation seems to arise out of careless reading, and superficial understanding of my basic points. I was referring to the impoverished core capacities. A comparative (compared to normal persons) impoverishment of communication, emotion, behavior, etc. At Merzenich's blog, you persistently avoid the comparative aspect of the discussion ... what I and others were referring to when discussing the limitations/deficits/impoverishments of autism are the features that are limited compared to normal persons. You re-conceive of, for example, the emotional limitations of autism/Aspergers in a relativistic way that denies the reality of what is occurring. And again you also avoid the general aspect of the discussion. You believe, for example, that ASD persons simply have different emotions, and express these different emotions differently. You also objected to the observation that they have a deficiency of emotion. Here you again are pointing to a rival conception of autism, one that is fundamentally different that the current conception. You seem to be in denial of the basic aspects of the condition, and have a need to conceive of such things as the obvious emotional devastation as, simply, being something different, rather than a pervasive and profound and debilitating and adverse problem both for the ASD person's themselves and those that care for them, and those that try to treat the condition.

In your quote above you then connect your misunderstanding and misreading of what I said to two views: (1) if we conceive of ASD person's as having profoundly limited or deficient emotional and social capacities (if we "underestimate" them in this way), then we might conceive of them as being less fully human, and (2) a common view is that to be fully human is to have normal emotional and social capacities.
First, in (1) nothing is being underestimated. This is the reality of the condition. Yes as in mental health in general, there have been improvements in the level of respect for those with various conditions, and through science there appears to be a growing understanding of the nature of the conditions. In the recent past, many with a wide assortment of conditions were treated horrifically in medical and non-medical settings (hospitals, schools, at home, by family, etc). This has improved overall it seems. But for autism, like some other conditions, the more modern and main understanding of the condition as being one of profound and pervasive deficits/limitations/impoverishments is based on the reality of what factually occurs with autism. Behavior, thinking, sensory capacities, communication, etc, are of fundamental importance. ("Behavior" encompasses all of these things). The sensory symptoms you refer to are in an important sense behavior: the sense are used to interact with the world, the self, others, etc.

Secondly, your view on what you think the common view is of what it is to be "fully human" is simplistic and superficial. "It is commonly believed that social connectedness and emotions are what make us human." Not human, but rather, normal. But regardless, your view is simplistic and superficial, and as such inadequate.

Thirdly, you then conceive of the discussion of ASD persons pervasive and profound limitations as "this dehumanization". You view is poor, arising from a gross misunderstanding of the basic aspects of my and others discussions, and the important general aspects of the discussion in science and medicine. I've explained this above in this post. The issue, I explained, is about the limitations, the deficiency, the impoverishment of the limitations.

Your persistently have a need to explain away certain things, find other explanations that are more pleasant to you, and avoid the reality of the condition. It is of course reasonable to take part in and add to a discussion about refining our understanding of ASD, but your discussion is thoroughly psychological, and your ideas are quite poor. I've found this to be consistent with you, both in your understanding of your own apparent symptoms (such as your believe you have a degree face-blindness, when in fact it clearly is an Aspergers symptom: you don't look at people closely, avoid looking closely, look quickly, etc). You seem to need to think of this symptom of yours as a non-Aspergers symptom and rather a neurological symptom of a different kind.

You seem to have an aversion to autism/Aspergers, the discussion, the descriptions, the presentation, the observations. This could relate to your denial of what you yourself encounter, your inability to face it and the need to explain it away.

I consider your interpretation and reading of what I wrote to be of concern. You do this consistently, and to many people, including Dr. Merzenich, Barsila, and others. I've considered you quite inept in this regard, and made this clear to others. You seem to have no notion that you may be failing to read something with minimal care, you don't take the time to adequately understand the points of others, your interpretations are highly biased, you contrive views of what others discuss for your own purpose. Your discussion, ideas, and observations are of poor quality in my view.

Dan said...

Many others have profound limitations - normal infants, people who have one of dozens of other neurological conditions, many seniors, those with varying degrees of physical limitations, etc.
They are all fully human, regardless of the extent they are limited.
It's not necessary to contrive a false conception of what they face for the purpose of thinking more highly of them.
It is unfortunate when science is led by someones psychology. When needs dictate concepts.

Your views Ariella seem to be those in the self-help or coping category, rather than of science.

Anne said...

Another way that my view differs from yours is that I believe that the DSM criteria is a list of behaviors or characteristics that are used to diagnose pervasive developmental disabilities *in children*. The view of some of the other posters seemed to be that these diagnostic criteria define autistic spectrum disorders in a person of any age. I don't think that view constitutes a "clear scientific approach" because it extends the DSM criteria in a way that was not intended.

An autistic spectrum disorder manifesting in a 3 year old looks different in adolescence and adulthood. Although ASD kids are developmentally disabled, they are not developmentally arrested. They continue to grow and develop, albeit on a different trajectory from typical peers. I think this was recognized in the DSM-III by having the diagnostic category of Residual State Autism. Possibly that category was removed from the DSM-IV because it was thought that a person who met those criteria did not really have a disorder anymore.

Sometimes it is necessary to make an ASD diagnosis at a later age. For example, there was a time when it was considered better practice to give a diagnosis of MR, if the child tested MR, instead of autism, even if the criteria for autism were also met. I know of some people who received a later diagnosis of autism because of this. When a diagnostician conducts such a later assessment, he or she tries to get a developmental history of the person to see if they would have met the diagnostic criteria of autism *as a child*. That's because the criteria are characteristics of children.

It is a common misconception of the public, including some parents with newly diagnosed kids, that autistic people don't develop but just grow into larger versions of their toddler selves. But this isn't the case.

The academic science lab is no more the "real world" than is the courtroom, where I sometimes live. But that's okay. Both are parts of the real world. In both domains, we use systematic procedures (scientific method, rules of evidence) to get at the truth. But the truth is only what we can discern based on the data or evidence we have at the time, with the application of the rules that we use, and subject to a variety of factors like the time or budget we have, our level of skill and experience, our biases or prejudices, and so forth. Many people rightly criticize our results as incomplete and, therefore, not the whole truth. We just do the best we can within the constraints under which we operate. No form of human inquiry has a monopoly on The Truth. I don't think that we should dismiss criticisms of people that inhabit other parts of the real world, and who are looking at our issues from different points of view, as trivial. This is especially true when the criticism comes from the people whose lives are affected by what we do.

Anne said...

Dan, if that is in fact your name:

Who is Ariella, and why is she getting stuck with what I said? And why are my views being analyzed in light of her "psychology?" I feel like Alice in Wonderland. This is kinda creepy and unfair to Ariella, especially if you are making concerns about her known to others based on what *I* am saying. I'm not her, babe. She's not to blame for this.

I think you've been a little too hard on me, but I'm glad we had this little discussion. It was very enlightening.

Dan said...

Actually my last couple posts hold regardless of your psychology. The psychological additions were very small aspects of the larger issues and discussion, and in any case, may serve to either supplement points I already made, or the psychological additions could be left out entirely and the points and discussion would still hold.

Couple other things.
You seem to conceive of and regard ASD persons as having minor problems ... you seem to regard them as many regard shy people, or introverted people, or reclusive people, etc. That is, you seem to regard them as being slight variations among normal people, which is (1) factually false, (2) highly disrespectful to the degree and nature of their condition, and (3) some practical implications would seem to be (a)to stop, decrease, or minimize treatment, (b) decrease, minimize, or stop funding for treatment research, (c) decrease or discontinue special help social and educational programs, (d) and to decrease, minimize, or stop the empathy for ASD persons, that is, the empathy for them being persons suffering from a pervasive and profound disorder of the nature described in science.

Different point. In your posts here and at Dr. Merzenich's blog you clearly interpret my discussion (and some of Dr. Merzenich's and some of Dr. Barsila's) about the impoverishment of many core abilities of ASD persons as a criticism of ASD persons themselves, and a criticism of their impoverished abilities. This is a poor interpretation. There is no evaluative or pejorative aspect to my disscusion. The terms 'impoverishment', 'profound deficits', 'pervasive deficits and limitations', emotional impoverishment', are factual terms to refer to the (a) kind and (b) intensity/degree of the symptoms of autism/Aspergers persons. They are factual descriptions, not value judgments.

Actually, as noted above, you apparently persistent denial of the kind and degree/intensity of ASD symptoms could entail a decrease in the amount of consideration, seriousness, and empathy that the condition and those who have the condition warrant. Your minimization of the condition, your denial, etc, also seem to entail a fairly high degree of delusory thinking I'd argue: as demonstrated in your posts at Merzenich's blog and at this blog, you think of ASD person's core abilities of emotion, communication, and behavior as being quite extensive, well developed, etc, but in different ways and with different ways of expression, and, you continue, while these things are not apparent to observation, they are nonetheless there in operation. It is fairly delusional to conceive of ASD person's in this way. In essence, you are implying that you are objecting to the conception of their diagnosis (ASD) ... you are implying that you think those with ASD do not have, as the DSM reads, pervasive qualitative and quantitative impairments/deficits in social interaction, communication, behavior: http://ani.autistics.org/dsm4-autism.html
While you imply this with your posts, you never discuss the ideas that underly your thought fragments. As such, the discussion from your end is fairly poor, and also rather emotional.

brain - research neuroscience group said...

so, talking about autism. First, it is about children behavior with autism? It is about adults with autism or it is about children with autism that become mature? Is this process of maturisation based on social interaction learned skills, as writing or using a PC, or it is based on instincts that starts from our social nature?
Let's take an example: a language. is someone talks to you in a language that you do not understand,at the phone, it is possible to predict an action? Maybe from the tone of his voice. But if the voice is flat? What happens next? After some words, the discussion will end. But, if that voice at the phone, tries again to speak, an again, and again, maybe I'll try to learn th language. But can I feel the nuances, the expressivity or the metaphors? as one that speaks that language from his family? (first language). Can I feel a metaphore in this second language if the tone is flat, and i never heard before that metaphore? Maybe I will lie on the reaction
of others an I will learn how to react when i will hear again that metaphore. If autistic persons are just special and different, ant the normality is a state defined by the number of people that use it, a person with depression has something to do with illness? or he is a different kind of soul? I sad soul, not mind, because if it was a different state of the mind, we could research it. This scientific research sometimes can make the studied persons feel like experimental instruments? In a neuro-imagistic research of the spine, for example, the study is made with the agreement and understanding of the subject. But a child with autism goes to the hospital since he was little. Has this something to do with the reaction to his "different state" in the future grow-up autistic man? I guess it does. Returning to the "soul" example, when you say that are different souls, an emotional approach is made,and the science is pushed on its limits and limitations. Talking about special souls, so an emotionally attitude, the general appearance seems to have a superior statute (social , congnitive) to others. Is this a relief from the scientific pressure? Using his special reality, an autistic person can mantain the functionality as a biologycal system or as a cognitive system by his own, or this special normality needs the normality of the majority? For example, a genial paintor needs time for his creations, this means that, at the begining at least, someone else must take care fr the money, house etc etc. But are the autistic persons genius? Not all. So, by enhancing the "special state" idea aren't we creating a wrong idea, and create a switch between the social pressure (in the light of illness) to the social pressure of the "he must be very good at something BECAUSE HE IS AN AUTISTIC MAN?. Or , if we consider them normal, or shy - as Dan observed, and they aren't capable of this usual normality?...what happens. This could be interpreted as social ingorance by some autistic persons too. Is an autistic person happy when his "different nature" is not observed by the others, and he is treated in the same way as the majority, with no criticism or empathy? Are autistic persons trying to reach this state? If the answer is yes, i think science could come in. If not, will he adopt something like "i'm an artist" as a relief or as a belief? If science is studying the neuronal mechanisms, and reveals some aspects different form the usual normality, will enhance his beliefs about a special kind of being, or it will make him to believe that he is regarded by others as ill, because his neuronal networks don't have the classical functionality.
Claudiu

brain - research neuroscience group said...

Two points of view: you are relating, as a scientist with a person (with autism). You can test his intelligence, communication skills etc thinking at him as a person who will go home, who will do many kind of things. The results may reveal high intelligence, emotions or difficulties etc. In the mind of the researcher, this are the results regarding the autistic person, a human being, as him, as his friends etc! Form here - in the case of bad results, he can try to extract some good news too. Ex: they have poor social skills but they have
good skills in observing detail from a kind of picture. But, also, a scientist could make a PET scan or simulate a neuronal network on the computer, to find "what's there". This kind of scientist, as the first one, wants to make a new step in elucidating this "different state". but he will reffere to the neurons, spike patterns, networks, white fibers etc, not to the child, or to his neighbour. a scientist from the first category will be "cognitive prepared" to observe changed levels of neurotransmitters? The second type of researcher will be able to
look at a person with autism detached from his observation? The second one has an easier life: the lab is the lab, outside is life! But, the first category will enter in the lab thinking that person has iner life, hopes etc. Can he be detached from this and say: is something wrong!A scientist which studies the neuronal networks could say: it is a problem with this...neuronal network, but the effects can be compensated by.... Then, this result cam pe used in hospital, and he will be happy to see that the autistic person, due to his.... has now a girlfriend, because his neuronal network is working as social interaction demands. The first kind of scientist, will find that autistic persons are more intelligent that it was believed, have special way of saying something. There are very good news, maybe the social oppinion will suffer some changes...but will he find a girlfriend showing to her this good results? I used the example with the girlfriend because is more touching.

If a study demonstrates that an autistic child trial has normal emotions, what's the continuity of this research. It is ok then. i don't want to say that we have to find "bad aspects", but is everything is ok, why not to focus on another illness? If a study reveals that they have high intelligence on some scales, the effect on the future is... This will change the behavioral therapies? and how? Or it has just the role of an "social reabilitation". What I want to say is that it is good to find what's there. Knowing that we can conclude what will be next. Because the start of this discussions was "the computer game addiction" i'll use this example. If we find that all the kids have the same behavior regarding this activity, we can't use this observation to see what's with the autism. But, if the autistic persons have a different relation with the computer games, first we can compare with the normal ones (as behavior) and move further to see what neuronal mechanisms, pathways and information processing is different. correlating the computer models, with neuroimaging etc, we can conclude that a neuronal network that spikes so... does this, otherwise....that. In Parkinson Disease tremor cells were identified as so, because we know the firing pattern in humans without this discharge pattern of the neurons. In the next step, we can try to modulate the firing pattern of the affected cells to spike normal. The results are, in this social context, a better life for those who have PD. But if we consider that "tremor is a mark of high social statute" for example....no research, no treatments and the persons with PD will still have difficulties in doing every day chores. (but with the hypothetic social status in the example cleary marked by tremor). So..., first what's there?! not how should we see.... and how it will be the next step in autism research? an effort to demonstrate the normal inside differences at behavioral perception level or it will be a period of research on neuronal mechanisms and behavior, a period orientated more on the mechanism and less on our perception on this mental state through the research result?

C.Barsila; L.Spinu

brain - research neuroscience group said...

also i can observe that a discussion that had the origins in game addiction and autism moved from the scientific facts to the "how autism is perceived" and how are the autistic persons - intelligent or emotional etc etc. But the discussions about what's there, what the cognitive mechanism in this addiction or what neuronal mechanism can lead to such addiction - less present.

Anne said...

"Often you write in your above post that the observed symptoms of those with autism may, actually, arise from the underlying sensory symptoms, and as such, as you say, "Information like this raises the issue of whether we are properly interpreting observed behavior and drawing the right conclusions."

Here you are pointing to a possible cause of the observed behavior. This doesn't change the reality of the behavior, the limitations, and what is observed. X could cause limitation Y, or A could cause limitation Y, but limitation Y, regardless, is still present. The cause is important, but the limitation is still a reality. Yes identifying the cause can entail a different understanding of the limitation, but the limitation is still there."

True, the limitation is still there, but our understanding of what it arises from dictates what we do about it. As Fred Volkmar points out in "A Handbook of Autism and Pervasive Developmental Disorders," if a limitation the use of language is present, it makes a difference whether the limitation results from deafness or autism. It is a misuse of a diagnostic classification, Volkmar says, to elevate it to the level of an explanation or to use it to obscure lack of knowledge.

I agree that autism has severely disabling aspects, and I agree that science should be used to investigate autism and could lead to advances in ways to help autistic people. Rigorous scientific work on proposed autism treatments is sorely needed, in fact. In addition, the assistance provided to autistic adults should take into account what they say they need, and not just what others think they need.

I don't agree, as Dan posts, that the province of science lies only with identifying "the limitations, the deficiency, the impoverishment of the limitations." The purpose of science is to advance our understanding of the subject of the scientific inquiry. I doubt that any physicist, astronomer, chemist or biologist would say that their inquiry is limited to "limitations, deficiency and the impoverishment of limitations." And surely there are neuroscientists and neurobiologists who study the way "normal" brains work just so we can have a greater understanding of that.

To state the obvious, "science" has not discovered everything there is to know about everything. Some areas are more advanced, some less so. In the case of autism, it is less so. Notwithstanding the existence of diagnostic criteria, there is no scientific concensus about what autism is -- the diagnostic criteria do not explain autism. I think the closest we can come to a concensus is that it is a neurological condition with severely disabling aspects that exists in slightly under 1% of the population. Research is being conducted on whether there are different phenotypes of autism, and I think that will branch out into an inquiry of whether differing phenotypes are the same "thing." The scientific understanding of autism is, so far, incomplete and fraught with uncertainty. Given the lack of knowledge, it isn't scientific to insist that the DSM diagnostic criteria constitute any kind of comprehensive concept of what autism is.

So, how is science going to help autistic people? Claudiu posits that if we can find a neurological basis for it, we could find some way to correct it. This is similar to Manuel Casanova's thinking, for example, with respect to his findings about minicolumns, and his idea that transcranial magnetic stimulation could offset the effect of the brain differences that turned up in his study. But this is all theoretical, of course. Issues of brain connectivity, white matter volume, differences in minicolumns and so forth have not led to any treatment for autism. That is not to say it is not valuable information. It is only to say that "science" has not developed much of an understanding of autism yet.

All the "scientific facts" about autism so far have, in fact, not led to any demonstrably effective treatment. The most common treatments for autism are behavior modification and the off-label use of psychiatric drugs. I don't think that either of these treatments has ever been shown, to a scientific certainty, to be an effective treatment for autism. That's why there are so many quack treatments offered, from chemical castration to exorcism. (In addition, I wonder whether behavior modification is the preferred treatment for any other neurological condition.)

Claudiu asks whether there is any benefit to knowing anything about autism that is not a limitation or detriment. The answer is yes, because that knowledge will advance our understanding about what is there, as he says, and it can be used in fashioning approaches to education and treatment. For example, recent studies on autistic cognition -- not only on the presence of fluid intelligence but also possible strengths in inductive learning -- could result in significant changes from the discrete trial method of teaching autistic kids that could be more effective for them.

I think it is premature to insist that the existing state of autism research has determined what autism is, and any criticism of it is a denial of the truth. I think you guys have a lot more work to do.