Aspies For Freedom

Greetings!  AFF is the first place I thought of when I read this article:

http://www.jg-tc.com/articles/2006/12/16...res002.txt

Even better yet, read the Aspie response at the end of the article.  Go Chris Reiss!  Funny, neither the reporter, nor her editor have replied to his pithy comments.

Dixie
(an NT friend)

Hmmm, I cannot figure out how to edit the original thread, so here is the cut and paste of the article and response:

Understanding Aspergers


By DAWN SCHABBING, Features Writer
dschabbing@jg-tc.com  

Asperger syndrome, according to the National Institute of Neurological Disorders and Stroke, is an autism spectrum disorder, and a condition characterized by a degree of problems in communication, language, repetitive or restrictive patterns of thought or behavior.

A child with Asperger syndrome is often isolated because of their poor social skills and narrow interests. He has delayed gross motor skills.

He might approach other people, but instead of normal conversation, it would be eccentric or focused only about his singular interest.

The treatment of Asperger syndrome usually includes addressing the core problems: communication, repetitive routines and clumsiness.

Dr. Thomas Snowden, pediatrician with Sarah Bush Lincoln Health Center, described Asperger syndrome as a milder form of autism. There is no test for Asperger syndrome.

Autism is a genetically linked disorder that affects boys four times more often that girls. It is found in three to six per 1,000 births each year, he estimated.

“These children are pretty smart,” Snowden said. “But, we have to teach them to behave in social settings, and treatment involves targeting the child’s problem -- attention issues, depression, frustration or routines.”

Snowden said one difference between autism and Asperger syndrome is that the AS diagnosis usually comes later, because the children retain early language skills.

Many symptoms are the same, however they are less severe with Aspergers.

“These (Asperger syndrome) children don’t function well in new situations. They often act inappropriately socially. However, their verbal IQ is good, their performance IQ is lower,” Snowden said.

He said these patients can’t interact well with other children, therefore they often have few friends. They also are often clumsy. Their speech shows peculiarities.

“These kids seem to be obsessed with a single topic or a subject,” Snowden said. “Their knowledge can be exhaustive on that one topic. They are almost like little professors.”

The child might have a strong particular interest -- for example trees or cars -- and that’s all they want to talk about.

Children with Asperger syndrome can learn to cope with the disorder, but may find social situations challenging.

“We have to teach them. You have to be very exact, very clear and repetitive with these children,” Snowden said. “I think everybody is getting better at working with these kids -- the schools, the speech therapists.”

Adults with the disorder often can work at jobs and have relationships, and some can live independently, according to NINDS.

Snowden said in some cases these adults are very productive, such as with Temple Grandin, a University of Illinois graduate with a PhD. in animal science. Grandin has published more than 300 pieces on autism and animal science.

“She’s the rock star of autism. She’s the one people with autistic children look up to.” More on Grandin can be found at http://www.templegrandin.com.

Treatment of the disorder includes behavioral modification and medication, according to Aspergers.com.

The medication treats symptoms such as impulsivity, aggressive behavior, rituals and anxiety.



AND THE RESPONSE:

chris reiss wrote on December 16, 2006 9:41 PM:
"This information is outdated and uninformed. Not all difference is disease nor disability. According to Dr Rosenn, a national leading expert on Aspergers, "Aspergers has given the world some of its most beautiful ideas." People on the autistic spectrum sometimes perform at intellectual levels that unseen anywhere else in the human experience. Forget about Temple Grandin. Albert Einstein, Bill Gates, and Mozart are widely considered to have (had) Aspergers. Asperger children (aspies for short) develop an early command of language which rivals that of college-educated adults. Far from being ritualistic savants, aspies are wildly creative and original thinkers. Their abilities in mathematics, music, art, and literature are famous. Much of what the article states is simply a subjective value judgment of a 'normal' person who considers their own talents and modes of communication the only 'right' ones. You do not have to be "very clear, very exact and repetitive." You must speak in a fully formed, complete sentence exactly once. Aspies do not make assumptions to fill in the gaps. So think before you speak. To say many aspies go on to live normal lives is - well - rather silly. Many go on to win Nobel Prizes. It is true that many aspies struggle with mood disorders and problems of social adjustment. However, it is not yet known how much of that is due to aspergers; and how much is due to a xenophobic world that treats any misfit as diseased. Finally, of course there is a test for aspergers, or it couldn't be a DSM diagnosis. It is a neural-psych. exam that a qualified psychologist can administer. It is not perfect, but neither are similar tests for other conditions. Here is an online screening you can take : http://www.wired.com/wired/archive/9.12/aqtest.html Here is another test for infants : http://news.bbc.co.uk/1/hi/health/3929045.stm If you want to know more about Aspies - and that includes me - this is our place on the web : http://www.aspiesforfreedom.org/ -- Chris Reiss, Boston, MA "Autism Rocks." "

Chris Reiss wrote on December 16, 2006 9:55 PM:
"Please correct my earlier post and replace "Dr Rosenn" with "Dr. Daniel Rosenn of Wayland, MA""

GREAT response, Chris!

This line is soooo true:"Not all difference is disease nor disability."

Indeed -- all differences used to be sins -- now they're diseases and disabilities. (Except for gays and Lesbians -- we get to be labeled both diseased and sinful!)

I laughed out loud at this comment:

"To say many aspies go on to live normal lives is - well - rather silly. Many go on to win Nobel Prizes."

Hehe. Exactly.

EXACTLY.  I've had this experience so many times.  People think I'm slow for not picking up on what they mean, but that's just because I don't make assumptions.  I need people to say EXACTLY what they mean or else I won't understand.  I don't see why that's unreasonable.  And that reminds me.  I think I know why aspies are bad at understanding sarcasm: it's because they're open to anything as being possible.  Therefore if someone says something that is highly unlikely to be true, NT's think "oh, he's being sarcastic" and aspies think "oh, it's a weirder & more diversified world than I thought."  And that goes along with what Temple Grandin says in her book "Animals in Translation"--basically, NT's see what they expect to see.  Their brains filter out everything else.  Aspies don't have that filtering system, and we see everything.

I'd love to see her reply to that, however, I have a hunch that she'll probably bin it.. :S

Plus it's rubbish to say there are 4 times as many males as females with Asperger's. That is outdated information. The true figures would be closer to 50/50 split.

I also object to all the emphasis on social engineering in the original article - treating people with Asperger's as if most of their behaviour is inappropriate.

I tried to reply telling about this site

http://isnt.autistics.org/index.html

Haven't seen my comment yet.

IS IT POSSIBLE ASPIES ARE BEING HEARD?  Only the listening is happening at a snail's pace and may take a couple of generations to get the point across - provided genetic testing doesn't cross the finish line first.  I have been watching the "Discussions" over on Wikipedia on AS with some interest.  Progress is being made there, let's just hope the momentum is maintained.

The discussion can be found here:  http://en.wikipedia.org/wiki/Talk:Asperger_syndrome

And here is a sampling:

[edit] positive aspects
I hate to call into dispute an article that is, on its own terms, so well done. But there is a near-total omission of the positive aspects of aspergers, of the growing controversy over the term 'disorder', and the emerging scientific evidence that aspergers may actually be a great benefit to certain people and to society.

Over the last few years, people with aspergers (aspies as they like to be called) have formed online communities like http://www.aspiesforfreedom.org (mentioned in the article). On that site, there are thousands of members advocating the (extreme IMO) view that aspergers and autism are not diseases at all. Their sheer numbers suffice to establish an alternative POV. There is mention of this in the article, but given emerging scientific evidence and a large and rapidly growing group of dissenters, the controversy deserves top billing as a central issue.

The debate over 'disease' vs. 'difference' is not terribly factual and perhaps does not belong here. However, there is credible scientific evidence that some aspies exhibit superior mental functioning in several dimensions. It is well established that certain autistics can perform feats of memory far beyond normal human capacity. For instance, Stephen Wiltshire from the UK can draw an entire city from memory, nearly precisely down to individual window panes :

   http://www.youtube.com/watch?v=jVqRT_kCOLI
It is not limited to simple recall; Hans Asperger himself wrote that, "To our own amazement, we have seen that autistic individuals, as long as they are intellectually intact, can almost always achieve professional success, usually in highly specialized academic professions, often in very high positions, with a preference for abstract content. We found a large number of people whose mathematical ability determines their professions; mathematicians, technologists, industrial chemists and high-ranking civil servants." -- Asperger H. Die ‘autischen Psychopathen’ im Kindesalter. Arch Psychiatrie Nervenkrankheiten 1944;17: 76-136

Asperger later made the rather shocking claim that "It seems that for success in science or art a dash of autism is essential."

There are new studies emerging supporting the correlation of autism/aspergers to giftedness; the correlation gets stronger the higher the bar is raised, including up to true genius. This is one such study of students at the Cambridge University, from 2001 :

"The autism-spectrum quotient (AQ): evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians." --Autism Dev Disord. 2001 Feb;31(1):5-17.
http://www.ncbi.nlm.nih.gov/entrez/query...s=11439754

Clearly there is a defensible POV that asperger/autism is not always detrimental, and may in many cases be beneficial and preferable to both its possessor and to society.

This is no academic matter as a genetic test for asperger's in a fetus will soon be available.

We have a very unusual and perhaps unique situation. The medical community has identified a disorder, is focussed on its symptoms and treatments, while new data is emerging that the condition can be a predictor of talent. To make things stranger, we have many people - myself, temple grandin, hundreds of posters on the AFF web site, who have an asperger's diagnosis yet state clearly they would not opt to be cured

These points are touched upon in the article to a limited extent, briefly, toward the end. But a quick scan shows roughly 95% of the text focusses on negative aspects, and the language itself is often subjective, for example "Narrow, intense interests". The word narrow has a negative shade of meaning, as in "Narrow minded." Does a child who spends a summer reading a book on relativity have a "Narrow" interest? Not if he grows up to unify the fields of nature. "Sustained, intense focus" would be a neutral way to express the same thing. This sort of colored language is pervasive in the article.

I suggest the following. If no one else wishes to, I offer to rewrite the article, giving both the 'disorder' view and the 'gifted divergence' view equal consideration. I ask the wikipedians for guidance in this as i'm a newbie. I realize there are some sticky points, e.g., the diagnostic criteria are in dispute and insist on certain defects by definition (and may be swept away by a purely genetic definition.)

It is clear, however, that the description of asperger's as a set of bothersome symptoms is woefully incomplete, that the issues i've mentioned fall well outside the medical profession's authorative domain, and a balanced view is called for.

I very much apologize for the length of this note, it's ... um ... an autistic trait

216.99.241.9 08:33, 23 January 2007 (UTC) CeilingCrash

CeilingCrash - I think you, me (the anonymous opener of the Aspie Parenting issue a couple of comments above) and the previous commenter have highlighted the over-negative aspects of the article well. I certainly think it needs a considerable re-write. Incidently, great chunks of it are plagiarised straight from the references given at the end, so more than a simple restatement are required.
I would suggest the following points need to inform a re-write:
1. Aspergers covers a wide range of levels of difference from neurotypicality (if there be such a word; I've just coined it anyway, Aspie word-player that I am). As I mentioned under the Aspie Parents issue, a lot of the negativity is based on assumptions about Aspies based on the most severe presenters of the condition.
2. Aspergers is equally validly viewed as a different way of thinking as a disability. The exact nature and severity of the symptoms in a given individual will make a massive difference to the impact of the condition in that individual, and therefore whether to that particular individual it is a disorder or simply their rather idiosyncratic way of being and thinking. Modern thinking on mental health, learning disabilities and developmental disorders concerns itself with impact rather than pathology. Obsessing about trains isn't a problem; banging on about them to everyone you bump into at a party might be. You can learn not to do that. Naturally, Aspies vary in the degree to which they can learn to compensate and cope with given aspects of their condition.
3. Insight is vital. I personally have found it much easier to compensate and cope since I found out what was different about me. Had Aspergers existed as an understood phenomenon when I was at school, for example, things might have been very different. —The preceding unsigned comment was added by 194.176.105.36 (talk) 10:10, 23 January 2007 (UTC).
I agree, especially with #2. I do not wish to advocate for aspies, nor to enter the disease/difference debate. The two views are not incompatible, autism debilitates some and empowers others, both aspects are thoroughly documented. This dual nature is central to the condition and rather than being an after-thought, is a necessary first principle in order to fully characterize this condition and convey the current state of scientific knowledge about it. CeilingCrash 13:47, 23 January 2007 (UTC)
I agree as well but I am going to remove the "Neutrality disputed" tag as it is not a correct indicator of the issue. There is just an aspect that needs to be added to the article. I am an Aspie and have a son who has a serious ummm.. ?case? of Aspergers. Look forward to creating this article with y'all. Alex Jackl 16:08, 23 January 2007 (UTC)
I'm heartened by the directions this discussion is going. Re CeilingCrash's comment that "the two views are not incompatible": I think an incompatibility has arisen from a vaguely applied label and its continuing misapplication. I think Simon Baron-Cohen begins to get at the issue when he says "Three types of people were revealed through our study: one for whom empathy is stronger than systemizing (Type E brains); another for whom systemizing is stronger than empathy (Type S brains); and a third for whom empathy and systemizing are equally strong (Type B brains)."[1]
It seems to me that what he is calling a "Type S brain", I've been calling a "healthy Aspie". (I'm now looking for sources that elucidate that notion.)
I think the problem is that different types of dysfunction, such as depression and ADD for instance, look different in different types of brains -- and we've made a connection between depression, for example, and AS that is myopic. That's where the biochemical research, such as on oxytocin, endocannabinoids, sex hormones, etc., comes in; dysfunction is when an individual of any brain type has outside-of-optimal levels of specific biochemicals. What isn't dysfunction is what has been called here, "positive aspects", i.e., what different brain-types, functioning at their best, contribute to society.
Btw, I would very much like to review a source for your comment, "...a genetic test for asperger's in a fetus will soon be available." Such a test would indeed bring up a lot of social engineering quandaries.

--Renice 17:37, 23 January 2007 (UTC)
Thank you all for your warm welcome. Renice - yes, it was the possibility of genetic 'screening' which had an impact on me; to me, getting balanced and complete information out is now a moral issue. The scientific consensus appears to be they are "closing in". I didn't mean to give the impression that it is a fait accompli headed for the shelves soon.

http://www.dukenews.duke.edu/2000/02/autism204.html

"Less than three years after beginning a search for genes that confer a risk of developing autism, Duke geneticist Margaret Pericak-Vance and her colleagues have found evidence of two defects that may be linked to the complex combination of behaviors called autistic spectrum disorder." ... "Pericak-Vance, director of the Duke Center for Human Genetics and lead investigator of the autism genetic studies at Duke, and her team located defects in tiny sections of chromosomes 15 and 7 ..."

The potential ethical problems were mentioned in the popular press,

  http://www.msnbc.msn.com/id/7899821
entitled "Would you allow bill gates to be born?" A singularly unfortunate headline, as I think the answer is a resounding NO irrespective of neurology

CeilingCrash 18:33, 23 January 2007 (UTC)

CeilingCrash, you might want to make changes gradually, as this article is currently at featured quality and should remain so. If you want it to discuss a "gifted divergence" view of AS, you should work from reliable sources that discuss that view (published sources from the AS research and diagnosis communities are good), and stay close to what they say. You shouldn't add statements based primarily on personal experience or internet forum posts. Gazpacho 06:21, 24 January 2007 (UTC)

Thanx Gazpacho, that is what I shall do. I understand that drastic changes, or changes that introduce conjecture (such as the post-mortem diagnoses of figures such as einstein) or opinion will work against the goal of a credible and complete account arrived at by consensus.
Major changes I will introduce here rather then just plunking them in.
On that note, I'm open to suggestions for a definition of asperger's which is reasonably brief and accounts for the dual aspects of enhanced and impaired ability, from a peer-reviewed source preferably.
It is my sense that we should remain agnostic on the disease/divergence issue and simply present the facts : aspergers does these good things and these bad things, here's the research.
In that vein I think the DSM criteria should remain, as well as most of the present article, tho possibly with rephrasing that removes apparent bias.
CeilingCrash 08:55, 24 January 2007 (UTC) 216.99.241.4 08:41, 24 January 2007 (UTC)