How About Not 'Curing' Us, Some Autistics Are Pleading

[HuckleB]

http://www.nytimes.com/2004/12/20/health/20autism.html

How About Not 'Curing' Us, Some Autistics Are Pleading

"Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.

"We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. "So we can't be 'cured.' This is just the way we are."

From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has. "People don't suffer from Asperger's," Justin said. "They suffer because they're depressed from being left out and beat up all the time."

That, at least, was what happened to these students at mainstream schools before they found refuge here. But unlike many programs for autistics, this school's program does not try to expunge the odd social behaviors that often make life so difficult for them. Its unconventional aim is to teach students that it is O.K. to "act autistic" and also how to get by in a world where it is not."


FOR COMPLETE STORY:
http://www.nytimes.com/2004/12/20/health/20autism.html

[oldhat]

1. Thank goodness.

Leave them alone, you meddling quacks.

[Demeter]

58. Autism Is a Description, Not A Disease

Some victims are relatively undeterred by their particular manifestations--but most are not. My daughter, for example, not a classic case, will never be able to live independently. She has a "mild" case, but that only means she hurts all the more deeply. Those who don't want a cure have no need to expect one being forced upon them. Those who would like one will take any chance of improving their lives.

[Banazir]

135. Whether a person wants a cure has nothing to do with "deterred".

I've met a lot of autistic people both in person and online. Of the ones who want a cure, they have been diagnosed with Asperger's, autism, and PDD-NOS, they have been considered all levels of functioning. Of the ones who do not want a cure, likewise. The main difference between those who do and those who do not seems to be one of attitude, not one of degree/type of difficulty. I know people who will cite difficulties similar to mine and say that means they want a cure. I know people who can do many things I cannot do and still say they want a cure. I do not want a cure because my understanding of autism is that it refers to something stemming from characteristics too deep to merely extract like a bad tooth.

I have certainly endured many attempts to cure me. I have been through behavior mod, forced drugging, special diets, institutionalization, and a number of outright kooky 'therapies'. Thus, I take exception to the idea that those of us who do not want a cure would not have one forced upon us. Many of us who do not want a cure have at least had attempts to cure us forced upon us, many of which harmed us for life.

It has been my experience that the no-cure autistics are less likely to be suicidally depressed than the ones constantly striving to become something they are not. This does not mean that learning and growing is bad, but constantly wishing to be non-autistic is generally awful for autistic people's emotional well-being.

And learning and growing take many shapes, including autistic shapes: Autistics tend to adapt best to the world when we use autistic adaptations, because non-autistic adaptations tend to not take our particular brain wirings into account. It is more useful for me to carry a familiar hard object with me than to simply try to quell the panic arising from sensory overload when I cannot comprehend new places. Familiar hard objects are a very autistic adaptation to the world that have been documented since the beginning of people looking at autism as distinct. I use a marble. I know of one autistic person who uses plastic spoons. These keep us oriented in ways that may be difficult for non-autistic people to comprehend and therefore teach us about.

I have gotten better at not blowing up. I would not get better at this from conventional non-autistic techniques. I have had to learn to recognize overload, to remove myself from a situation, to control my body before my body loses control, to deliberately stop processing certain kinds of information in order to buy time, to use those objects I talked about in the last paragraph, and to allow my body to move in various harmless but strange ways in order to diffuse some of the overload. Again, these are skills that I do not believe most non-autistic people are able to fully comprehend. My growth into a person who blows up less has not been by becoming non-autistic, but by using autistic traits to mitigate intolerable situations.

These are only a couple of things in which there are autistic ways to deal with them. There are autistic ways to deal with communication (even though it may always be difficult), with social interaction (even though we may always stay unusual in that respect), and so forth.

Some things we may not be able to do or to do on a regular basis, and help with those things should be no more shameful or wrong than the person who is not a farmer buying his groceries from someone who has farmed the fruits and vegetables he needs. The fact that this help should not be considered a burden is becoming more important with the economic plans of Bush, who is likely to slash a lot of assistance programs. Rather than institutionalizing all of us who use them (and I would fit in that category, and I would only go back to an institution kicking and screaming), communities need to find natural ways to fit us into them. The help we need should be provided fairly naturally in the same way not everyone has the skills to be a farmer and a repairman and a butcher and a teacher and a doctor and a lawyer and a plumber and a veterinarian. I am very worried those of us without those skills will become expendable soon, indeed already are expendable as far as the government goes, and it will be up to us and the other citizens to see that we are not treated and disposed of as expendable.

That's getting off on a tangent, but it relates in there somewhere. At any rate cure-wanting is not attached to so-called functioning level and having an attempted cure forced on us is something many of us have experienced already so claiming we haven't doesn't make a lot of sense. Do people really believe that autistics are split into two groups so discrete that there is no overlap?

[GinaMaria]

177. Excellent post

Thank you for sharing your experience. I do not know a lot about autism. Your post is enlightening. Thanks again for sharing your experiences.

[Karenina]

206. The "cure" angle

REALLY annoys me as it posits the condition of being "wired differently" as a "disease." Two decades ago I referred to my kid as WD and it cracks me up to see others using that term now, recalling the struggles I had with the medical profession.

I had two advantages in becoming an effective advocate. One was being the daughter of a neuropsychiatrist who engaged me at a young age when I showed interest in his profession. (We read "In Praise of Folly" together when I was 7). He made sure I understood that anyone who CLAIMED they had all the answers assuredly did not.

The other was my first-born being neurotypical. I picked up on the differences quite early, was able to educate myself and speak the lingo.
Came in handy when my 2nd kid was being "tested" for "expressive language" he did not at the time possess.

Disease/Cure is another B/W paradigm that is inappropriate when applied to a multicolor sunrise.

[alfredo]

2. Maybe Jack Thomas's ability to key into one subject, learn and understand

it could pay off for all of us.

If they find their lives fulfilling, why should they be cured?

[samwisefoxburr]

3. I have Asperger's Syndrome and I don't want a cure...

...and even if there was a cure, how would I act after I had it? Would I lose interest in computers (which is my special interest)? Would I get depressed if I'm alone instead of enjoying being alone?

Frankly, I don't think it is possible to make a cure for Asperger's and Autism. And after living for years and years with Autism and having to deal with social situations, would I really learn how to socialize better with just a cure? I don't think so.

I also do fine in social situations, thank you very much.

[Syrinx]

10. what is Asperger's Syndrome?

Sorry that I don't know.

[samwisefoxburr]

11. Here's the Wikipedia page on it...

http://en.wikipedia.org/wiki/Asperger%27s_syndrome

[Syrinx]

12. thank you n/t

[Cronus Protagonist]

19. You opened a can of worms for me there

My jaw hit the floor when I read that. The "symptoms" described my childhood and my life so far. I've never thought I had a "disease", although life had been very difficult for me to the point that it appears from my perspective that the world was designed for "them", not me.

I'm not ill, though. And if someone comes up with a pill, I'll gladly shove it up their ass for them, using tongs, of course.

:)

[Mr_Spock]

33. I don't even appreciate the "disease" in quotes in your post!!

It is rather annoying isn't it that folks want to describe people with a different set of social priorities as being somehow abnormal. Fine, I'll take my top 2% IQ and patents and not share with anyone - HA!

[nashville_brook]

51. dis-ease

in our society -- anytime anyone functions above mediocre it is a "disease."

rock on spock! we need more people like you!

ps. i don't think the above poster meant anything by the term disease

[Mr_Spock]

53. Yeah, I know no malice was intended, but the term needed to be pulled out

and clarified anyway!

...

"Being more object-focused than people-focused is clearly only a disability in an environment that expects everyone to be social. But a moment's reflection highlights the injustice of this expectation. Thus, people who show the opposite pattern (of being more people-focused than object-focused) are not necessarily considered disabled. On this view, people with AS/HFA would cease to be disabled as soon as society's expectations change. For example, a child with AS/HFA who prefers to stay in the classroom poring over encyclopaedias and rock collections during break-time, when other children are outside playing together, could simply be seen as different, not disabled. It is not clear why the child with AS/HFA is seen as doing something less valuable than the other children or why their behaviour should be seen as an index of impairment."

...

http://www.geocities.com/CapitolHill/7138/lobby/disability.htm

[nashville_brook]

62. or maybe they realize the kids on the playground are wankers

when i was in high school at first i hung out with all the popular girls in the lunchroom until i got disgusted that the only thing they talked about was how much money they spent at the mall.

then i started going to the library at lunch where i saw lots of people like me, who would rather spend their lunchtime unemcumbered by morons.

being social is more than just talking to people -- if you are sensitive, you don't want to hang out with pinheads.

[Mr_Spock]

64. Yeah, unfortunately with Aspergers you cannot even conceive

of hanging out with the "popular kids" as you are immediately kicked aside and possibly beat up due to totally inappropriate responses. Been there, done that. I did learn to kick their asses for that though as my very pronounced sense of right and wrong (justice) compelled me to take action against the ass-wipe bullies. I was suspended and ended up leaving school - but it was worth it. I'm sure my parent's didn't see it that way :D. Nice thing about Aspergers is that you could care less if people like what you're doing because you are SO used to being ostracized that you learn to play that game all too well.

[nashville_brook]

119. i think it can work both ways (from experience)

not conceiving of hanging out with popular kids is just the other side of not conceiving there would be a problem hanging out with popular kids. it might just depend on how progressive your school environment is. or how your neighborhood is stratified.

[Cronus Protagonist]

102. So why do you claim ownership of a "disease" then?

You keep referring to yourself as "having Aspergers". My point was that I am just like that and I don't have a disease. Not at all.

As far as I'm concerned, my life is marked simply by a later development than the others, neotony in fact; a normal human condition that appears to be a mode of generating maximal development.

Don't you feel that you are fine just the way you are? If not, my bad. And if so, why embrace what society claims is a disease worthy of treatment?

[Mr_Spock]

125. Why did you just refer to it as a disease??

That is crazy. I fit into the Aspergers definition of a set of physical and social stereotypes that makes it very difficult for me to interact socially. It bothers me. It has caused me many serious depressions and suicidal thoughts. I have had to take medicine to help me deal with the depression. I have had my body not function properly due to excess anxiety. I am happy with myself at the present time - I actually feel that the SSRI's I took for depression allowed me a "window" where I was able to see the stressful situations for what they were and I was able to learn techniques to deal with these situations while on the "happy pill". I believe the SSRI saved my life. I now feel like I have a handle on stuff that took me years longer than most people to learn (social cues). I SO wish that my parents had known about the awful pain, anxiety and depression I was feeling throughout my childhood and teenage years and had done SOMETHING to acknowledge my differences and make me feel OK about being "different". I don't give a fucking rat's ass what society want's to call it or how they want to treat it, I just wanted the people closest to me to help me deal with things, and, if necessary, get me some medications to help me try to deal with the pain. I had to wait 'till my late 30's to finally get help and I did it on my own (had a sensitive doctor (GP)). I'll be DAMNED if my daughter is going to suffer in silence while I am so acutely aware of the pain she is feeling inside. Yes, she can JUST get by without being kicked out of school, DOES THAT MEAN THAT SHE DOESN'T NEED ANY SPECIAL ATTENTION?????????? Oh, and she is on TWO medications right now that are allowing her to function at school - she WOULD be kicked out of school without these medications. We have really, really pushed the school system to accommodate her because WE DON'T WANT her to be STIGMATIZED like I WAS. What is with all of the FUCKING PEOPLE HERE WHO ARE CAUGHT UP IN TERMINOLOGY AND OVER-DIAGNOSIS AND ALL THIS OTHER CRAP!! SHUT THE FUCK UP!! YOU ARE PISSING ME OFF!

[Cronus Protagonist]

130. Because Aspergers is a disease, as is autism

http://dictionary.reference.com/search?q=disease

dis·ease n.

1. A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.
2. A condition or tendency, as of society, regarded as abnormal and harmful.
3. Obsolete. Lack of ease; trouble.

+++

I'm not buying that the set of "symptoms" in Asperger's "disorder" is an indicator of disease (or disorder), and from what you're saying, I get that you don't consider it to be a disease either.

My question has not been answered. I, myself, display most of the alleged symptoms of Aspergers, yet I do not have a disorder, or a disease, or a clinical condition. I am normal for myself. I do not claim to have a disease.

My question was, if you don't agree that it is a disorder or disease, why claim to have it? I don't. Maybe you shouldn't either? Just a simple question because I'm interested, nothing more, nothing less.

But I see from this response that you have other conditions that require medication, so I'll drop it as it seems to be upsetting you.

Be well and be happy. Many happy returns to you this holiday season.

[Mr_Spock]

131. Aspergers leads to depression VERY often.

Thanks for being so understanding :eyes:

You read my post but refused to comprehend the words that were written there. Seems like Aspergers to me :evilgrin:

[Banazir]

138. I tend to stay out of these, but...

I tend to stay out of the "is it a disorder or not?" thing, but I have to ask a question.

By your standards, when homosexuality was in the DSM and in public view a "mental illness", was it a disease?

Did it stop being a disease once it left the DSM?

Does it start being a disease again in communities that still consider it "abnormal"?

[gorbal]

191. It's a condition

It's not a disease, it's a condition, and it causes anger from both people who "suffer" from the "condition", and others who just suffer from the diagnoses. Some poeple are angry becasse they knew there was something wrong and they didn't know what it was, others are angry because they don't think their is anything wrong with THEM!

I personally think there is a disconnect between the many different types of peopel in our society. We put some people into the category of "malfunctioning" that perhaps shouldn't be there, and they are justifiably angry. Others know that there is something wrong, like I know that I could never drive and that my autistic brother may never be able to live by himself, and I suffered for a while when I was child because my problems were not addressed.

When I was diagnosed at 14 it made me feel better knowing that my sensory integration issues were finally being addressed, but the fact that they are diagnosing people who can function ten times better than myself is irritating to both me and them.

[Banazir]

204. But that's the thing...

Driving only became something many people did within the past century. Before driving became commonplace, and in places where driving is not commonplace, being unable to drive was not considered a dividing line for anything.

There are many communities in the world where virtually nobody lives on their own. There are some people in this society who would be considered dysfunctional for being unable to survive 'on our own' (I'm one of them, by the way), who in other times or places would fit right in in that respect (even if possibly considered strange). I've seen examples of this.

I don't feel particularly bothered or threatened by people describing themselves as autistic if they can do things way better than I can. (I can sometimes do things they can't, too, but that's beside the point.) It's not necessarily easy to detect autism in someone with good enough acting skills, it doesn't mean the person is suddenly non-autistic. And if those acting skills finally fall apart on them, I don't want to be among the ones responsible for claiming they were never really autistic to begin with. I'm no more bothered by them being considered autistic than I'm bothered by someone who can't write being considered autistic.

I just regard the whole argument about where to draw the line as pretty much moot unless it's in the context of applying for services.

[Name removed]

38. Deleted message

Message removed by moderator. Click here to review the message board rules.

[0007]

47. Lots of material there!

[Old Mouse]

17. Thanks for sharing.

Once I learned of the syndrome, I realized many people, successful ones, I knew in the computer industry had it, and were leading happy, normal lives.

[HuckleB]

30. Actually,

they might have some similar symptoms, but they don't meet the actual threshold that should be in place when making such a diagnosis. For a true diagnosis of Asperger's to be made, function must be seriously impaired in some large area of life. That means that at least some large part of their lives would be, to be uncouth, "a mess."

Unfortunately, overdiagnosis is all too common these days. And self-diagnosis only adds to that.

[Mr_Spock]

44. Many, many people with Aspergers ARE VERY successful!!

All of the literature (I have read several books on this) states that people with Aspergers can and often ARE very sucessful! It is the mix-up between Autism (low-functioning, often low IQ) people and Aspergers (high functioning, typically high IQ) that screws everything up. I personally don't even accept completely that Aspergers is an Autistic spectrum disorder. I have Aspergers and I am quite sucessful career-wise (not socially). Your broad statements imply that you are an expert? Are you?

[HuckleB]

52. Successful in some areas of their lives, but not all.

Otherwise, we're not talking about someone who should be labeled as Asperger's. We shouldn't be so quick to label every difference in humanity. The point of a DSM diagnosis is to note an issue that causes extreme functional deficits in some area of life. Without that, there should not be a diagnosis.

[Mr_Spock]

59. HA! DSM is a joke according to some researchers...

"Conclusions of this review:

The majority of the research has concluded that the DSM-IV provides inadequate criteria for the clinical diagnosis of Asperger’s Disorder. As it stands currently, there is little clinical usefulness to the Asperger’s Disorder diagnosis. Until the criteria for Autism and Asperger’s Disorder are better delineated, clinicians should focus on the level of language development of children with PDDs in order to best estimate prognosis and treatment."

"Being more object-focused than people-focused is clearly only a disability in an environment that expects everyone to be social. But a moment's reflection highlights the injustice of this expectation. Thus, people who show the opposite pattern (of being more people-focused than object-focused) are not necessarily considered disabled. On this view, people with AS/HFA would cease to be disabled as soon as society's expectations change. For example, a child with AS/HFA who prefers to stay in the classroom poring over encyclopaedias and rock collections during break-time, when other children are outside playing together, could simply be seen as different, not disabled. It is not clear why the child with AS/HFA is seen as doing something less valuable than the other children or why their behaviour should be seen as an index of impairment."

http://www.geocities.com/CapitolHill/7138/lobby/disability.htm

The argument rages on - do a search...

You have a very narrow view of these differences that I find a bit disterbing...

[HuckleB]

61. Yes, the DSM has many problems.

It is partly political, it cannot take into account the world's cultural differences, it is slow and can't keep up with the pace of research knowledge, and on and on and on.

However, that does not discount the issue of functional deficit as a threshold for diagnosis of any disorder. If function is not seriously impaired, there should be no diagnosis. Otherwise, we could diagnose everyone with some label or another.

[Mr_Spock]

63. When exactly does a social deficit reach the "functional deficit"

that you describe? Aspergers is formost a social issue - and not necessarily a disfunction if you read my previous post.

Here is another quote from another web site:

"In people with Asperger's Syndrome, deficits in social interaction and unusual responses to the environment, similar to those in autism, are observed. Unlike in autism, however, cognitive and communicative development are within the normal or near-normal range in the first years of life, and verbal skills are usually an area of relative strength."

What exactly do you mean by "functional deficit"?

"The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger's report no difficulty functioning in their everyday lives."

http://www.udel.edu/bkirby/asperger/

If you have learned to adapt to your condition, does that mean that you no longer have Aspergers? C'mon, let's be serious here.

Do you have Aspergers?

[HuckleB]

87. Actually, that's not how it was originally defined.

That may be how some folks are choosing to define it in order to diagnose a greater swath of the population, but there is no purpose to diagnosing a "social deficit" if it does not interfere with function.

As for defining function, of course that includes some gray area, but when the term Asperger's was originially used, it described folks who were incredibly successful in one or two areas of their lives, but often could not take care of their family, if they had one, had few close friends and relationships and often went through many acquaintances quickly, leaving them with no support system, they sometimes literally could not feed themselves because they couldn't cook or shop, and, therefore, had to go out to eat, or ate very poorly, and on and on and on. Since then, the term spectrum came into play, and it has allowed medicine to diagnose anyone with a remote symptom into the "spectrum." Yet, there is no justified reason for doing this.

Further, as for being serious, let's remember how this line of conversation began: With a poster saying that many of the people he or she worked with could have been diagnosed with Asperger's but weren't and yet lived successful and happy lives in every area? Hmm. So they're "Asperger's" but they never needed any assistance in development in any area and are now fully functioning and happy adults? I'm not saying the remarkable individual couldn't have figure this out, but let's truly get real. We were talking about overdiagnosis, and this is something that now occurs with Asperger's, just as it does with ADHD and other mental health diagnoses these days. Few practitioners have the understanding of the full background of the diagnoses, and even fewer have the time given to them to make a true diagnosis. Knowing that, I cannot tell you how many kids diagnosed with Asperger's no longer have that diagnosis, once their parents gave up on a health professional who failed to do a full assessment, and, therefore, left the kid without the kind of treatment he or she really needed. And, yes, I know it was the other way around, a few years back, when it comes to misdiagnosis.

[Mr_Spock]

127. I am going to post this here for you to read - Mr. know-it-all, this is me

I fit into the Aspergers definition of a set of physical and social stereotypes that makes it very difficult for me to interact socially. It bothers me. It has caused me many serious depressions and suicidal thoughts. I have had to take medicine to help me deal with the depression. I have had my body not function properly due to excess anxiety. I am happy with myself at the present time - I actually feel that the SSRI's I took for depression allowed me a "window" where I was able to see the stressful situations for what they were and I was able to learn techniques to deal with these situations while on the "happy pill". I believe the SSRI saved my life. I now feel like I have a handle on stuff that took me years longer than most people to learn (social cues). I SO wish that my parents had known about the awful pain, anxiety and depression I was feeling throughout my childhood and teenage years and had done SOMETHING to acknowledge my differences and make me feel OK about being "different". I don't give a fucking rat's ass what society want's to call it or how they want to treat it, I just wanted the people closest to me to help me deal with things, and, if necessary, get me some medications to help me try to deal with the pain. I had to wait 'till my late 30's to finally get help and I did it on my own (had a sensitive doctor (GP)). I'll be DAMNED if my daughter is going to suffer in silence while I am so acutely aware of the pain she is feeling inside. Yes, she can JUST get by without being kicked out of school, DOES THAT MEAN THAT SHE DOESN'T NEED ANY SPECIAL ATTENTION?????????? Oh, and she is on TWO medications right now that are allowing her to function at school - she WOULD be kicked out of school without these medications. We have really, really pushed the school system to accommodate her because WE DON'T WANT her to be STIGMATIZED like I WAS. What is with all of the FUCKING PEOPLE HERE WHO ARE CAUGHT UP IN TERMINOLOGY AND OVER-DIAGNOSIS AND ALL THIS OTHER CRAP!! SHUT THE FUCK UP!! YOU ARE PISSING ME OFF!

[HuckleB]

174. Interesting.

I should just shut up then, because you are the true "know it all?" I am not allowed to discuss, to share my observations, my experience, my knowledge? Sorry, but I am not the one who is acting like a know it all. I did not tell you to shut up. I did discuss the genuine situation, however. You can choose to ignore it and to distract from it with sideline responses, as you have. That's your choice. However, you have made it clear that Asperger's has affected your life seriously. It has affected function, if you will. That would be the justification for diagnosis. Going back to the post that started this part of the thread, however, that was not the case with the people the poster was attempting to self diagnose. It is also often not the case with people who are sometimes diagnosed as such in a world where practitioners too often jump on "the latest" diagnosis and see it in everyone. I am sorry that this discussion makes you mad, but that is not my problem. It is a necessary and worthy discussion.

[Banazir]

137. There is a justification.

In my eyes, there is a justification for calling some people autistic even though they don't fit the exact original stereotype.

One is that autism is a landscape that merges with other neurologically atypical states as well as neurotypical states. People can pretend that away, drive a hard line between autism and not-autism, and in some ways there is a really big difference between autistic and non-autistic, as many people will testify, but there are always shades of grey and different colors as well.

Another is that a very functional person may well be doing a lot of work behind the scenes that nobody knows about. What this often results in is someone looking very successful in all areas while in their head they are performing a massive juggling act, like juggling seven balls while tap-dancing. One day, they get exhausted and fail at the juggling act. Then they have nowhere to turn because people claim if they were ever doing the "functioning" at all (and they never see the juggling act behind it) then they were never truly "impaired" and therefore never truly autistic. People in this position often find themselves suddenly unable to care for themselves, burned out, and hopeless because they cannot get the assistance or diagnosis they need. They were not non-autistic in the interim time, they were autistic people who were doing an awful lot of work in their minds to appear normal. I know one woman who went through her entire adult life that way until she found herself in her fifties having married someone without quite realizing what she was doing and started a family. She had only seemed slightly odd, but suddenly for whatever reason she couldn't keep up the balancng act anymore and fell over. Fortunately her husband was supportive, many people don't have that.

To trivialize the experiences of the people in that second category is to set them up for a lot of misery later in life. No matter how their outward functioning appears during a certain period of time, it does not mean they will be able to keep that up indefinitely since they are piling all they have to do to do "normal" things on top of all they have to do just to do the basics.

[Mr_Spock]

142. Thank you for that excellent description of the "balancing act"

that so many of us face. I get SO frustrated with the psychologists, psychiatrists and others who are taught a very rigid system of diagnosing people with "disorders". Unfortunately this "disorder" is best described as a set of stereotypical ways of thinking that are expressed in different aspects of our lives and appear to other so called "neurotypical" folks as "odd" or "abnormal". Both you and I are VERY capable of expressing ourselves here in writing (you better than me), but both of us have issues with our face to face interfaces. We are both acutely aware of our conditions, yet from your other posts it is clear that I can more easily appear relatively "normal" amongst my piers. Does that make me a failure or a bad example for other Aspergers people? It makes me very unhappy as I sit here feeling like I have to defend my ability to function (pretend) relatively normally. Discounting all of the pain felt by someone who is in this in-between place is such an awful thing to do - I have an indescribable instinct to want to lash out and beat the living shit out of these people here who insist on arguing whether it is a "disease" (like it matters - just another way to attack my level of functioning) or arguing about the definition of "dysfunction" and what does that mean (like I want to split hairs about this).

"What this often results in is someone looking very successful in all areas while in their head they are performing a massive juggling act, like juggling seven balls while tap-dancing.

Thanks so much for this very apt description. I am trying to control my anger toward the instigators in this post. They are even worse than the knuckle-heads I have had to deal with when growing up because they have some knowledge of the issue, but they see things from their own very narrow perspective and by applying their limited standards are further bullying by personally deciding based on their limited experiences what should and shouldn't be considered "pain". The only thing worse than an ignorant person is a person with limited knowledge who has decided that they know all there is to know. I thank these folks for causing me a great deal of angst and pain - perhaps I should stop dedicating my life to appearing "normal" so that I can provide for my family (which, incidentally, I don't live with - I wonder why that is?). :mad:

[Banazir]

149. No problem, I know a lot of people

No problem, I know a lot of autistic people who are caught in that balancing act, and I have tried my hand at it myself. While I didn't succeed in looking normal, I did succeed in thoroughly exhausting myself to the point of collapse. I can't imagine what doing it for decades does to people.

[HuckleB]

175. Yes and no.

Unfortunately, too many practitioners are stretching the supposed spectrum of Autism out beyond any justification. This often leads to misdiagnosis and mistreatment for those who no longer can keep the balls in the air, something that one can say about people with depression and/or anxiety who may have some OCD traits who then face a crisis and get mislabeled. It happens more often than folks want to think. And for some, Autism and Asperger's have become labels du jour. They need an explanation for their difficulties, and Asperger's is a whole lot hipper than depressed anxiety with obessions. And isn't there always a justification for everything, anyway? Further, we're talking about something that isn't going to lead to juggling later in life, without help early in life. This is a developmental issue, not something that strikes the brain later, as with bipolar disorder or depression. There is no trivialization going on in my posts. I am dealing with real world concerns that should not be trivialized as they have by some on this board.

[Banazir]

183. Actually...

Actually, a lot of people, even some pretty blatantly autistic people, get through early life without formal therapy and somehow manage to figure out enough to carry out that juggling act later on. As in, they might not talk till they were 5 or so, they might be socially ostracized throughout childhood, have their routines and so forth, but nobody knows what this is called where they live, or their parents were similar enough in some respects that they think it's normal, or they were born before autism was even a diagnosis (there are autistic people that old still), and over time they learned enough to at least appear to get by. This happens more than people think, to people just as obviously autistic as some of the people who are being diagnosed in childhood today. And it can happen for a wide variety of reasons. But when the juggling act falls apart, it can fall apart in a big way, and they do end up misdiagnosed.

I don't know a lot about overdiagnosis, but I do know that this scenario is often dismissed as implausible when really it's fairly common. Overdiagnosis might happen too, I really don't know enough about what current diagnostic practice is, but I do know the number of people I've met who've been through the above situation in its various forms and who have trouble convincing anyone they're autistic even when they desperately need assistance as adults, not because they don't look autistic now but because for a stretch of ten or twenty years they managed to hide it.

[HuckleB]

207. Studies?

I'd like to see where these folks developed typically without any support whatsoever? And I'd like to see evidence that they could actually be diagnosed with autism. Yes, plenty of people get no support in those years, and I've yet to meet one that didn't need serious support later in life, as development became a very serious struggle, leaving the person with a long life struggle. Children can't hide who they are. I'm sorry, but unless you can offer some studies on this claim, I don't buy your assertion.

[Banazir]

209. Did I say developed typically?

Yes, children can't hide who they are. Does this mean that every time and place in the world has had autism diagnoses for every child who was obviously autistic? No. Does this mean that people who were obviously autistic in childhood can't later learn to hide who they were? No. Does this mean that people diagnosed with autism in childhood always get formal help? No. Does this mean that learning to hide things at some point in life means developing typically or that it means the person wasn't obviously autistic before then? No. Does learning to fake things at some point mean the person won't need help later when that falls apart? No.

I do know several adults who were diagnosed in childhood with Early Infantile Autism, their parents hushed it up because back then it was still considered the fault of parenting, they received no formal support, and no, they did not develop typically (I never said they did), but they later on learned to fake things. Some of them never learned until adulthood that they were diagnosed as autistic when they were children, and others knew as children but their parents kept it quiet outside the home.

All of them but a few burned out somewhere between young adulthood and middle age and needed help, some of them can't get it because their records have been since destroyed (most places don't hang onto medical records that long). I don't know why you "can't buy my assertion" when I know these people personally, have spent time with them, in some cases have even seen copies of their medical records.

I also know people very similar to them (or even more obvious in childhood than they were) who didn't get formally diagnosed. Or got diagnosed with something else: Mental retardation and childhood schizophrenia are pretty popular ones.

Some people did get help, just not formalized help. Some ended up having to go it on their own. It's not as if autistic people are always stuck without learning how to do certain things unless they get some specific form of specialized training. Learning more slowly, or differently, yeah, but after awhile time can even a few things out in terms of appearance. Did they develop typically? Not hardly. Did they manage, by young adulthood, to pass for normal some of the time while in public, at an enormous cost to them? Yes, but they still needed help later after that interval. What's so hard to believe about that?

I'm having trouble figuring out exactly what bias on your part I'm running into. I'm starting to suspect it's several.

I could go on, but since the people I know are people, not medical studies, I doubt you'll listen. But then people are people, not medical studies, whether they're autistic people or not, and the world is not a tidy place where everyone follows some textbook pattern of development, least of all autistic people.

[TrogL]

90. When you can't get a date

or wouldn't know how to behave if you went on one.

[KamaAina]

74. Hey, just a poi-pounding minute there!

(no cotton to pick out here :-) )

The majority of the research has concluded that the DSM-IV provides inadequate criteria for the clinical diagnosis of Asperger’s Disorder. As it stands currently, there is little clinical usefulness to the Asperger’s Disorder diagnosis.

It so happens that my data analyses provided the background for Fred Volkmar and Ami Klin to get the Asperger's diagnosis included in DSM-IV. It sounds like whoever wrote that piece is among those who don't believe that Asperger's is a separate condition from autism.

If you want to see a joke, go back and look at the old DSM-III definition of autism. It had six -- that's right, six -- criteria. That was all.

[patcox2]

81. Everyone has an agenda. Labels are dangerous.

I have aspergers-like traits. I also have non-aspergers traits. My son and daughter are, as the specialists say, "a little aspergery." (very serious here, that was the conclusion of the child study team after 6 months of investigation). I have no desire to label myself, however, and I agree with the private psychiatrist and the public school psychologists that my kids do not deserve the label, even though they have many of the traits.

I agree about over-diagnosis being a danger and self-diagnosis being very dangerous.

Traits like this lie on a continuum. Labelling is an arbitrary act with important consequences. Many people have many different agendas with regard to this label and when it should or shouldn't apply. Unscrupulous psychologists want the label to apply broadly so that they can bill mommy and daddy's health insurance for the "treatment" or counseling or whatever. Likewise, labelling might have consequences for the school district and its funding which would give people on either side a vested interest in labelling more or fewer kids who might have more or less of the traits in evidence.

And some rude, self-centered people might like the satisfaction of giving themselves a convenient label which absolves them of all fault for their failure to learn appropriate social behavior and instead makes them not just "special," but also a victim of unfair persecution (its just an amazingly comprehensive all-purpose rationalization, isn't it?).

I agree with a restrictive approach.

[Mr_Spock]

83. Yes, this is precisely why we can't get the same diagnosis from

two different professionals. Because of people like you who are stigmatized by labels and other people you describe that want a label to get some sort of sympathy or money or quota, the process of getting help for one child on the verge of being kicked out of school is a friggin' joke! Thank God I can relate to her thinking process and force people (even including her mother) to take her social ignorance seriously. It's amazing some of the bizarre behaviors people will overlook so as not to "stigmatize" a child. Then the kid gets ostracized and beat up and kicked out of "mainstream" schools. There is no simple solution to diagnosis, but paranoia about "labels" is the worst possible thing anybody can do. This should be considered an issue of people who are mostly normal but may need special help, but due to "normal" parents who are so freaked out about "labels", this is a VERY difficult thing to accomplish. I hate this aspect of this particular topic.

[K8-EEE]

140. Who Is Successful in ALL Areas Of Life?

Are you?

[HuckleB]

178. Would you like to join the discussion?

If so, please offer a question that actually focuses on the complexities being discussed, and not simply offer a verbal harang that oversimplifies the situation in order to attempt to "make a point" that doesn't need making.

Thank you.

[K8-EEE]

181. Making The Point...

That we should focus on strenths instead of ABA-ing their autistic traits to death. And yes one of my children is autistic and let me tell you this is an epidemic and we parents are viewed as cash cows for a whole cottage industry of people who claim to have 'cures.' I am coming to a point of acceptance and seeing that my husband and I have really been taken to the cleaners a couple of times and that most mainstream autism "professionals" don't know what the hell they're talking about.

I now believe the epidemic of Autism is linked with poisons in particular, mercury poisoning, another reason to hate BushCo.

[TrogL]

85. You must be in the right career

I tried sales (Radio Shack worked out fairly well but everything else was a disaster), teaching (the horror!) and finally stumbled into computers pretty much by accident.

My shrink says "Aspies do well with things, not people".

[Mr_Spock]

86. LOL - yes, I am in a very technical career.

I would die a horrible death if I had to interface with people as a requirement of my job. I know my limitations and I have learned where I fit in. Technical types (engineers, scientists etc...) are more prone to social oddness anyway, so it helps a lot working in this type of environment.

[Old Mouse]

67. overdiagnosis is a problem,

I stand corrected.

Professional misdiagnosis is also at what seems to be at an all time high.

[HuckleB]

88. Possibly.

But any diagnosis for any so-called mental health issue must be considered "pending," if you will. There is too much symptom overlap, and we don't have a great system or know the brain well enough to make definitive conclusions. That's partly why I fear the overdiagnosis issue more than misdiagnosis, since the latter is simply a reality of the "art" of health care.

[Old Mouse]

103. I fear Pifzer

Your written tone is precise and well measured, excellent communication. Do you have problems in effectively conveying meaning face to face?

[HuckleB]

111. Huh?

:shrug:

I'm not sure what your statement regarding Pfizer or your questions have to do with the discussion we were engaged in up until your last post. Please explain further. Thanks.

[Old Mouse]

136. Sorry to be obtuse

Your encyclopedic knowledge made me assume you were yourself a functioning high level person with Asperger's. I hope I didn't offend.

I worked briefly with neuroscientists developing software to grow new neural nets for improved cognitive function. My opinion after doing research on the growing cognitive health market is that the major pharmaceutical companies, with or without malicious intent, are working toward having a majority of Americans unnecessarily on drugs that effect brain function. But that is just my opinion, not a provable fact.

[HuckleB]

176. Your opinion may not be far off.

However, it is difficult to balance good care for those who do need it if we assume that every prescriber is just pushing drugs. And, believe me, I have known my share of overdrugged folks over the years, so I know that some do follow what they're told by pharmaceutical companies well too far. I also know that it's done because insurance companies won't pay to have folks seen at length by psychiatric specialists, whether for a full assessment, talk therapy, or environmental changes that can often help folks on the Autism spectrum. Anyway, sure, I've got Asperger's traits, including social anxiety and awkwardness that goes through the roof sometimes, but I have always done quite well with nonverbal cues, which is partly why I've spent much of my career working with nonverbal or nearly nonverbal patients. So... Blah. Blah. Blah. Good talking to you.

[LeighAnn]

29. Edison's teacher said he was "addled"

Think how the world would be today if Thomas Edison had been "cured"

[mzmolly]

50. Exactly, him and Mozart who had Tourettes and or ADD and or?

:hi:

[proud2BlibKansan]

70. Einstein

most likely ADD. Probably some learning disabilities too.

[proud2BlibKansan]

65. I like to think about what else he may have

accomplished if he had treatment. Edison had severe learning disabilities in math. Can you imagine what he could have invented if he had a better understanding of numbers? It's mind blowing. The man was a genius and struggled with learning disabilities that we can remedy today. Imagine what he could have accomplished if he had learned how to use his brain.

[nashville_brook]

45. my best friend's son has Asperger's

and he is brilliant!

i think it's an evolutionary adaptation.

social situations are totally overrated! :)

[Name removed]

97. Deleted message

Message removed by moderator. Click here to review the message board rules.

[Old Mouse]

104. I'm not sure if its evolution

But autistic and personality disorders are on the rise. (According to press releases from the medical community anyway.)

It is an interesting coincidence given the technology base of our information age.

[depakid]

113. More likely the increased

incidence (or prevalence) is due to better recognition of the disoders through refinement of the diagnostic crtiteria.

[Mr_Spock]

134. Also, people have less children and "black sheep" are no longer

accepted as part of life. We want and expect all of our children to be able to function in the world that we have constructed for them. Let me be clear that I do not agree with this approach (even though I am doing everything I can for my daughter). It's somewhat of a conundrum that we are faced with. There is a train of thought that the "technical mind" will become a preferred adaptation. I just think it's a funny thing to think about.

[Jim Sagle]

169. Fuckin' A!

:thumbsup:

[Mr_Spock]

173. Fuckin' B!

:D

[Not_Giving_Up]

4. My son is an Aspie...

He takes meds for ADHD to keep him focused. He doesn't pick on social cues, but we're working on that with him, and for the first time, he hasn't been sent to the office once all school year. (He's in fifth grade.) He's socializing now, but it all revolves around video games or Yu-Gi-Oh cards. He does math problems well beyond his years in his head, and darn near memorized the Guiness Book of Records last year. Maybe he'll win on Jeopardy one day.

They don't need a cure. They need to learn to adapt...and the rest of us need to realize that they just think and learn differently.

[Skittles]

6. I'm not sure they need to adapt to us as much as we need to adapt to them

I have a severely autistic brother - we get along fine as long as I enter his world and he does not have to enter mine - it's not that hard to do once you figure it out.

[proud2BlibKansan]

71. But how many people are going to take the time

to 'figure it out'?

I have a severely mentally ill sibling. I understand what you mean and we do the same thing in my family. BUT the rest of the world does NOT. So we work hard to make sure she has the social skills she needs to function in her portion of the world.

Sadly, we can't depend on people to always be kind, generous and understanding in dealing with those who have disabilities. We need to teach the disabled to 'fit in ' as well as they can.

[Banazir]

112. But... would you say this if...

Would you say that African-American and gay people should "pass" too because of what happens to them? Passing does happen in these groups, but the general consensus is that it shouldn't have to. Disability is no different in that regard, discrimination is discrimination no matter what the difference is.

[Mr_Spock]

7. As much as I object to these fools trying to make us "normal"

I do very much want to minimize the ostracizing of my daughter (we both have Aspergers) as I know it can feel terrible when you can't make people see things your way. And yes, we have very strong emotions like everybody that we simply learn to suppress until we learn to better understand the "social cues" that are all around us. I have a theory that Aspergers people age at about half the rate of so-called "normal" people. There is a reason that we have very baby like features for so long. I am in my 40's and I am just about as able to read social cues as some people in their early 20's. I feel pretty normal now since many people stop maturing in their early 20's anyway. It is annoying to me that it took so long - if there was a way to add only the ability to better read social cues without affecting personality, then I'd be all for it. The drugs that exist today turn people into passive zombies (or at least promote major personality changes) from my (personal) experience. It is NOT something that you want to be cured of - the advantages outweigh the drawbacks IMHO.

[Zynx]

13. Speaking of Jeopardy - Ken Jennings anyone?

I'd be willing to be money that he has Aspergers or something very close to it. *That* is the sort of thing an Aspergers mind can do with no real effort whatsoever. There's a reason no one was able to beat him - the average human brain simply cannot compete with that sort of machine.

[Mr_Spock]

5. Thanks for posting that story!

I consider Aspergers syndrome to produce in many cases a more "Spock like" human being who is superior to the emotionally racked and crazed for attention so called "neurotypical" people who think that we all should behave according to their so called "rules". F them, just because we express ourselves in a different way than many of the arrogant loud mouths out there, doesn't mean that we want to become perfect speakers/socializers as well.

BTW, I object to the assumption that Aspergers syndrome is a form of Autism - there is just as much evidence supporting a NOT autism conclusion as there is a "form of autism" conclusion. It REALLY pisses me off that simple-minded doctors (who, unless they have it, have NO idea what it is like) want to lump the two together without any evidence other than a few common traits between the two. DO NOT call Aspergers a form of Autism - it is UNPROVEN and simply a SUBJECTIVE conclusion which, while I have Aspergers, I just don't see the similarities as I look out of these eyes... Autism may be a low IQ version of the same affliction (Aspergers people usually have higher than normal IQ's), or it may be a totally different brain condition - we just don't know.

[mzmolly]

27. Many *gifted* children display so called "aspergers" like "symptoms"

Additionally, I have a book called "The Highly Sensitive Person" which talks about the different LABELS that are assigned to people who are simply "sensitive" and have a well developed nervous system.

Also it is said that Thomas Jefferson and possibly Einstein had so called "Aspergers."

I wonder these days WHO gets to decide what's "normal" and what is not.

My daughter didn't function well in school (ADHD? ASPERGERS, GIFTEDNESS) who the hell knows ... but I'm homeschooling now so were not putting her through the comply or else routine.

http://www.twicegifted.net/asperger.htm

One more interesting link:

http://www.twicegifted.net/ld.htm

[LeighAnn]

32. Funny how "Gifted" is now a "disorder"

When I was a kid, it was thought to be a good thing, and a child that was "gifted" was encouraged to run with it, and develop their talents because we were all "Free to Be You and Me". Conformity was something to be cured back then.

Aahhh, the late seventies. We came so far as a people, just to have 12 years of Reagan/Bush push back so much progress. Kind of like the nineties, and now.

[Name removed]

34. Deleted message

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[mzmolly]

36. I don't think it's viewed as a disorder, which is interesting because

Aspergers is and the characteristics are quite similar. :shrug:

Go figure

:hi:

[Not_Giving_Up]

37. My son is classified as gifted and talented and special ed

at the same time. Before he had the Aspie diagnosis, the teachers had no patience with him. There were power struggles, they were determined that he would do things their way. He hates to write, his handwriting is horible, his fine motor skills bite. He refuses to show work on math problems that he can do in his head. Teachers would refuse to accept math work simply because of this. He is now not required to show work on math as long as he's getting the right answers, and the teachers know that they can ask him to tell them how he got the answer. He's very verbal, and there's no problem there. He makes the honor roll every grading period now. In the past, he had the grades, but school policy was that if you got sent to the office you couldn't be on honor roll. He hasn't been sent to the office all year (thanks to the cooperation of three wonderful teachers), and is getting the recognition for his grades that he deserves.

[FlaGranny]

56. This sounds just like my

grandson. He is in the process of being evaluated this school year. He had a lot of difficulty with speech at first, but he's extremely bright. A solid straight A student, reading several grade levels above his classmates This year he hit a wall, though. The classroom has become "structured" because the students are studying for the "tests" this year and he is not adapting to that. He refuses to do make-work things, also. I hate seeing his intelligence being stifled by "teaching to the test." His teacher hates it too. His parents believe he has Asperger's after their extensive research on it. I hope that if his school confirms he has this that they are as enlightened as your son's teachers and school.

[Donkeyboy75]

80. That's exactly how I was in school.

Especially the "refusing to show work" on math problems. Unfortunately I was never able to win the battle on that one, despite my parents' help. Kudos to you for helping him. Many have little notion as to how awful that is.

[Banazir]

152. I knew someone who...

...was diagnosed with early infantile autism one year, mental retardation the next, and gifted the next. His school didn't quite know what to do with him, but he ended up shifted around between gifted classes and special ed classes among other things.

[Mr_Spock]

42. "The Highly Sensitive Person" and "Aspergers" and "Autism"

have a LOT in common. It is the overwhelming stimulation that many of us Aspergers people feel that prevents us from seeing the so-called "social cues" in a social situation. I can now see these "cues" because I am less sensitive due to my age. I actually used a rational approach to doing certain (illegal) drugs as a kid to try and desensitize myself because I could not stand the excessive stimulation at times. I didn't even realize until I was 42 years old that what I felt every minute of every day was called "Anxiety!!". Amazing how difficult it is for us to put certain feelings into perspective because we have felt that way for every waking hour of our lives!!!!! This is such a complicated issue, I could go on and on for days about the consequences of being neuro-sensitive and how that makes one see every aspect of daily living different than so-called "neurotypical" people. It is also an amazing gift - yes! I have a very high (top 2%) IQ and I can see problems in ways that no matter how hard I try, I cannot get a neurotypical person to conceive of!! This is why I so enjoy hearing that folks like Beethoven, Jefferson, Einstein and many other famous geniuses likely had this "special wiring" based on their clearly different social behaviors.


I'll stop here - my daughter also has Aspergers and I SO LOVE when she gets in peoples faces and tells 'em how it is. Respect authority? HA! Never and I am so proud of her as she is following in my footsteps in that regard!!!! I love the fact that we Aspergers people could care less what an authority figure has to say. Their "just another person" to us - and annoying ones at that!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[mzmolly]

49. LOL.

I have sensitivity issues as well, and totally understand "overstimulation" I think many of these "issues" are simply on a continuim?

My daughter on one of her last days of school was hiding under a table, covering her ears because school was "too loud" for her. :(

That was a final straw for me in the decision to Homeschool. :hi:

[Mr_Spock]

57. Yeah, there is an aspect of a "continuum" to these wiring differences

If one thinks about it, it is easy to see how wiring has to be different from person to person as we all have different genetic coding. When it becomes a problem with the uptight so called "neurotypical" people then it get's a special name - whatever! We have been able to mainstream our daughter though I worry every day that she will just explode at some point. She's had some very interesting experiences in her relatively short life - I'm so glad she doesn't dwell on them - I'm glad I understand where she is coming from as I have been able to act as a translator at times :D. What you see and what the AS person is feeling are two different things.

[mzmolly]

84. I knew I spelled "continuum" incorrectly.

;) Love the phrase "neurotypical" how bout "neuro-substandard" ? :P

Your daughter is very lucky to have you. And, ya know ... my daughter does explode at times, but I think that's totally ok (as long as were at home of course *cough* ) :hi:

[CornField]

54. Yet another reason the "New Freedom Iniative" is scary as hell

My 'gifted' daughter presents with such symptoms. What happens to these students when they are given their mental health evaluations?

[mzmolly]

55. Exactly. The drug companies just get richer. Pretty soon they'll mandate

medications like they do vaccines.

[Cronus Protagonist]

133. Thanks for that link - I'm just "gifted"

Although, sometimes I wonder, if this is a gift, what is it like to have no gifts? Easy street? Sometimes I think so. I often envy simple people living simple lives. Oh well, that's not for me, I suppose... :)

[Zynx]

8. I have Aspergers

<One of the two people who use this screen name.>

Haven't heard the term "Aspie" before. For the record, I don't "act autistic" much at all. People can't tell the difference unless I bring it up. This is actually something of a problem, because regular people don't know that they shouldn't expect me to be social, or that they shouldn't act aggressive towards me because I inherently take it much more seriously.

You can't "cure" the differences with Aspergers, the brain is simply wired differently. I have always had a very difficult time with social situations (dating is quite hard, parties and dance clubs tend to get overwhelming in a hurry). I tend to spend way too much time on the computer as well. But I can also do things that other people simply can't.

I can legitimately cram entire chapters of a book for a college exam, even one on constitutional law. I proceed to get grades that most of the rest of the "normal" class can't touch. Cramming generally does not work, but for someone who can process data like I can, its very effective.

I barely needed to take notes for four years of college. Grades were excellent regardless.

I can quickly memorize entire rulebooks for tabletop games (BattleTech, other things like that) so everything is second nature. Consequently I tend not to lose at these sorts of things because I almost never make a stupid mistake, even if I have been playing for hours and should be glazed over/tired. I also rarely, if ever, lose in RTS games because my brain calculates the end outcome of an exchange so quickly that I immediately realize if an attack or even a strategy is going to work or fail.

I can diagram an entire screenplay worth of story in my head with no need for notecards, treatments, outlines, etc. I am more or less watching the movie in my head. Most of my ideas are built up from incredibly small details that I expand into a whole world or story.

I can also count cards in blackjack to a degree that rivals what was seen in "Rainman". Essentially, I can break down a six-deck shoe in my head and figure out in a flash how many of what type of card are left, and how likely it is that the next card will be of a specific type. I don't play with enough money to really irritate a casino, but I very rarely lose. Same goes for poker. I may not be much good at reading tells, but I will know that there are exactly three hands that can beat me and the exact odds of the opponent having one of those hands. Good luck bluffing me consistantly. I might be wrong one in six times because I couldn't read you, but I will be right five in six times because you simply don't have what you need to beat me.

The biggest problem is because of my lack of reading social cues, I tend to get in a fair amount of fights. I have an extraordinarily hard time reading "mild" or "nuisence" aggression as that, and not a threat that should get pounded. My eyes also tend to dart around a bit and that can make interview-type conversations difficult.

Unlike most people on the autism spectrum, Aspergers individuals can be very successful. IQ's are normally astonishingly high (mine is somewhere above 140) and focus on a job tends to be excellent. Like some other posters have said, I'm not sure it should really be considered a form of autism, although I understand that some of the traits look very similar.

[Name removed]

41. Deleted message

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[Mr_Spock]

69. Hey fellow "Aspie"

I can so relate to misreading even the smallest amount of aggression towards me! Fortunately I think I got most of my fighting out of my system when I was a kid. I now have "tools" that I use to distract people who are joking with me so I can determine if they are truly joking or not. At this point in my life, I just assume that anybody who I know is just messing with me. I don't take kindly to strangers "F-ing with me" though. It still takes me up to several years to become comfortable with certain peoples styles so that I can have a causal conversation with them. These folks are usually narrow minded RW fuck-nuts anyway so it's no major loss.

[Name removed]

98. Deleted message

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[Banazir]

117. There may be different forms...

...although I'm not sure what the point of the different names for only two forms would be. I know some disagree with me.

I am obviously autistic. I can't do anything about it. Received years of behavior mod and couldn't pass for normal if my life depended on it.

It's very important for me therefore to combat discrimination against people who look obviously autistic as well as those who end up having to pass just because they can pass and society treats those of us who don't not very well. To make this a world where looking like me does not get me sent automatically to an institution when I go out my door, which has happened more times than I want to think about.

My biggest problem areas are in reliably being able to recognize and respond to my environment in useful ways. But there are things before that recognition and response that I value, things that the non-autistic language doesn't even have words for. Things that can only exist for a person who is not automatically processing information in the usual ways. I know I have social differences but next to other stuff they seem like a tangential side-issue.

I have no savant skills, but I also do not measure the value of my life or of the shape of my life by my skills. I am valuable because I exist, I am valuable as autistic because this is the shape in which I exist. I like this shape. I understand this shape in ways that people outside of me cannot. I have been presumed incapable of understanding, but that is not true. I know that I have an exact place in the universe and that this place does not include being turned into a non-autistic person. I need a good deal of unusual assistance, but I am not measured by a dollar value nor is anyone else or it gets into the realm of rampant ableism among other things. Those who assist me value me for who I am, not for what skills I do or do not have.

Autism is the configuration of my brain that gives rise to a number of things, not just a list of DSM characteristics. It is a word for a central part of how I am constructed. I cannot separate myself from my brain configuration, so I cannot imagine wanting a cure, any more than I would want to make non-autistic people autistic. Even if I had to spend the rest of my life without a reliable means of communication (and I have spent part of my life that way), it would not mean that my autism was this appendage that could or should be chopped off.

That is my stance on all this, and I am glad the article managed to convey this rather than resorting to the simplification of functioning level and "Asperger's" in order to drive home the point. Unfortunately some people will still read it that way, but our side has finally been represented as fairly as possible in the major media. And that is major.

[Matilda]

120. That is very eloquently put, and enlightening.

Thank you.

[Mr_Spock]

128. Thanks so much for sharing.

I get so frustrated trying to explain what it is like to be "configured" differently. I love that terminology and I am always fascinated to read about the way that folks with a unique wiring describe the world from their perspective. It is inevitable that people will define themselves based on where they think they fit in WRT clinical definitions. That part is a shame and I am guilty of that as well. Anyway, thanks again for sharing...

[phasev]

143. you're exactly like me

except for constitutional law I study computing mechanics and advanced computer operating systems.

I also have problems reading social cues and during interview-type conversations my eyes dart around.

Of course I was never diagnosed with aspergers syndrome. Is it even a syndrome or a biological specialization that society fails to accept?

[BobFred]

9. they know how much we don't know

autism is to hubris what sickle cell is to malaria

[stackhouse]

14. please help send dr peggy whitson to her iss home.

[imenja]

15. Most autistics are very low functioning

and cannot live on their own. Most are also severely mentally handicapped. The idea of the savant is a popular media image but extremely rare. Apparently rates of autism have increased dramatically in recent decades. I recall reading that it is thought to be related to toxins to which pregnant mothers are exposed.
It sounds to me like the young man interviewed in this piece is doing great, and that's wonderful. But I've worked with autistic people who can't bathe or eat on their own. If that could be cured, it would be a miraculous development. Anyone should be able to refuse medication or treatment if he doesn't want it, but I don't believe this young man's experience is at all typical.

[proud_Kucitizen]

16. Good point

but I would say many not most autistics are severely low functioning. Of all the autistics I know only one is a severe case. My son is diagnosed PDD another term for asperger syndrome and he is doing quite well since we took him off all medications 2 years ago.

I don't really believe there is a cure, the best we can hope for is that we find out for sure what causes it so we can prevent it. I truly believe that vaccinations containing mercury have been a big factor but getting the FDA or CDC to do a real investigation is never going to happen because of their relationship with the Drug Companies. Also, * lifting the regulations on Mercury emissions is not going to help either if Mercury is truly found to be a major contributing factor to autism.

[RobinA]

21. I Would Say That Most Autistics

are low functioning, some are not. It's fine to say "don't cure me" if you are able to function in society and find a happy life. However, for many with autism and Aspergers, this is not the case. A person with Aspergers and a severe inability to understand social cues is not going to find a lot of happiness living his possibily friendless, under-employed life. No one is forcing anybody to get cured, but trying to find a "cure" for people who want one is not some fascist plot.

[Bridget Burke]

23. Most people don't "know" the autistics who have been institutionalized.

And they can't speak for themselves because they aren't verbal.

The high-functioning autistics & Asperger's victims benefit from "treatment"--not aimed at curing them, but at helping them live reasonable lives.

[Banazir]

114. Did you read the article?

It described people who had been institutionalized and who could not speak, who were advocates of this movement. I am among them. When I was institutionalized, people attempted to speak for me, assuming I would want a cure. Now that I am out and have a means of communication (despite it not being speech), I am told that I don't understand institutionalization or the inability to communicate. It's a catch-22 for people like me. When we are labeled low-functioning (and I have been, not that long ago), others speak for us, and when we are labeled high-functioning (and I have been), we are regarded as not understanding "real autism". According to people who draw a sharp divide between the two, I am not now allowed to speak for the person I was (and the situation I was in), and other people should be the ones doing that, based on their presumptions of what I needed. I think I know a lot better what I needed and what helped me, than people who have not lived it.

For reference, I still cannot talk, I am still incontinent, I still self-injure, I still blow up in rages, I still need help with pretty much every aspect of daily life and have authorization for daily staffing in my home. I am also a fairly prominent part of the autistic self-advocacy movement. Would I want to be cured? No. To be non-autistic is to be someone else. To learn communication, as I have done, is not a cure. To deal with self-injury and rages is not a cure. Nobody in the article advocated not helping; we merely don't want 'help' that amounts to abuse, torture, or teaching us to go too far against the grain. Including the 'help' I got which reduced my communication skills while purporting to improve them. We need help that leverages our strengths and takes into account the skills we need to learn that most non-autistic people can't even conceive of, like making meaning out of our environment or grabbing at words when they seem to float away. We need to learn how to manage in autistic bodies and that takes a different strategy than non-autistic people would use. I began learning all these skills from other autistic people because they were the ones who taught me. They also taught me to value myself including the fact that I was autistic (among many other things that I am).

Meanwhile the assumption that all autistics who have acquired (after however long) a means of communication are suddenly so-called 'high functioning' in all areas leads to neglect. It leads to autistics being denied services based on perceived intelligence. It leads to a successful computer programmer I know who might starve to death because he cannot normally feed himself (and also cannot reliably get to the toilet when he needs to defecate). It leads to a woman being denied services because her IQ score jumped from 30 to 130 upon learning to type, despite little else about her abilities changing.

The real world is not black and white, low-functioning and high-functioning, autism and Asperger's. The real world is full of nuance and color and shades of grey. It amazes me that among this autistics are often the ones to understand this while non-autistic people accuse us of black and white thinking.

We need to fight the bad things that happen to us: Abuse, neglect, institutionalization, torture, ignorance, bullying, and so forth. We also need to learn ways to live in the world as autistic people, which may involve alleviating some problems we have and may involve learning to use our strengths in order to deal with the world. None of this requires becoming a non-autistic person. Our view is not "no help", and it is not without nuance. All of which, I believe, was contained in shorter form in the article.

[IStriker]

153. Your description of yourself...

sounds like my grandson who will be 5 soon. I wish that I could detect that there was someone inside like you.

[Banazir]

155. There is someone inside like *him*, at the very least.

I gave a talk for a group of parents once (on human rights, not on autism), and one of them had a lot of trouble getting over the fact that I looked like his son but (and he initially viewed this as so contradictory it was hard for him to get past it) wrote like an 'intelligent' person. He wanted to know a lot of things about his son that I just couldn't tell him, like how much his son understood what was going on around him, whether he would ever learn to write or speak, and so forth.

We (I was there with the person who supports me) ended up telling him things could go either way or one way and then the other, or any number of combinations of ways, but that one thing that was important was that his son was his son, not me, and was going to be whoever he was going to be. And that it was possible to start now at planning a life for him that wouldn't be totally horrible no matter how he as a person with or without various skills turned out. I mentioned that I was currently living in my own place because parents a generation ago made this possible by insisting their children should not have to live in institutions if they didn't want to. Of course not all things can be planned for, and plans can change, and people like Bush can always come along and throw a wrench in the works (and I'm scared to death of that as someone who needs these programs in order to survive), but the fact that there are more options out there than cure or institutionalization can be really important.

With someone who doesn't speak, I would say communication is the number one thing a person can learn. Because if we have reliable communication in any form, whether it's our own made-up language and/or body language (I know someone who did that and was unfortunately ignored by all her teachers as non-communicative), our own way of moving and reacting to things, picture cards, various augmentative communication devices, typing, handwriting, speaking, sign language, exchanging objects that have particular meanings to us, eye-blink codes, wordboards, anything we can possibly use to communicate, we can have much more say in our lives no matter what else we can or can't do.

Anything (short of abuse or torture, not that I think you'd necessarily do that, but I've seen three or four accounts of parents who beat their children to teach them to talk or type) that would help him genuinely communicate (which means attaching actions or words to thoughts and feelings and needs in order to tell someone else what you're thinking or feeling or needing) would be useful. Especially if it's about the basics. It took me a long time to learn certain things, there are still things I don't know how to say, and I want to know how to figure those things out because I've already risked my life too many times not saying anything when it was important. (It's partly a sensory thing too: What counts as pain and when do you talk about it? I wish they taught things like that.)

He's also very young. Many autistic people start speaking between the ages of 4 and 12, are toilet-trained somewhere in that age range, and so forth. So things really are pretty open still in that department.

But like I ended up telling the father I met, the most important thing about his son was that he's himself, not a clone of me or any other autistic person out there, and that he's valued as who he is instead of valued contingent on who he might become. (And that there are a variety of plans in place just as there would/should be for any child, depending on who he grows up to be.) And that watching his actions and how he reacts to things and so forth, while it can lead to mistakes, is a pretty good first step to communication. (Which is a two-way thing: Many autistic people can't read non-autistic people, but it goes the other way around too. So sometimes we're actually showing something loud and clear but our body language is different from non-autistic people's. Learning his body language almost as if you're learning a new language entirely can be important.)

There's way more to say than that but that's the start of my response to something like that.

[IStriker]

156. I know this is not about me or my daughter (his mother) but about him...

I want to thank you so much for posting on here and for answering what I said. You can't imagine what hope you have given me as I followed and read your posts down the page.

I knew right away that my grandson was different from other children I had been around. It took my daughter longer to realize because he was her first child. He is a beautiful little boy but very slow to develop, could not learn to crawl when most children were already walking, etc. We could not find a medical professional to diagnose him as autistic until about a year ago. Since then, he's been in a small special program for pre-schoolers and loves going. Although after a year, he still does not interact with the other children there is growth that is apparent.

I worry every day about what will happen to him when my daughter is gone as I cannot imagine that he will ever be able to live on his own. You have given me both hope for his future and some extremely valuable advice and for that I thank you.

[shrike]

31. I agree

An acquaintance has a family member who has never been able to live on his own and required constant supervision. His parents took care of him until he died, and now siblings are taking turns with him. He's a sweet guy, very lucky and well-cared-for. But the idea that all autistics are living amazing lives with amazing abilities is an exaggeration.

[Banazir]

118. Did someone *say*...

Did someone say that all autistics are living amazing lives with amazing abilities?

I don't think my life is all that amazing by typical standards. But I like it. It's my life. There are things I'd change. I would not want a cure. I'm not talking savant skills. The article took such pains to describe that not all activist autistics are the Einstein-type stereotype, and yet people read the stereotype without apparently reading the article.

[LWolf]

203. "Most autistics"

are not "Asperger's." I could give you numbers, but I left them sitting on my desk, and I'm at home for winter break.

From memory, classic autism has a high rate of mild to severe retardation. More so for one gender than the other; I don't remember which. Aspberger's is not classic autism; it is lumped into the spectrum because it shares some characteristics. Not all Asperger's people are gifted, but more of them fall within "normal" ranges of cognitive functioning than do "classic" autistics, and some function well beyond the normal range.

The numbers on my desk come from the inservice I did recently for the autistic spectrum, from the North Los Angeles County Regional Center. I was there because I have an Asperger's student.

[Old Mouse]

18. brain plasticity

I did some work with neuroscientists developing tools to retard and reverse cognitive decline.

The original technology comes from work designed to cure dyslexia in children, but its benefits are way beyond that. Way way beyond.

I think a lot of our scientific advance as a people can be credited to Asperger's. But I think some of you might be interested in checking out Scientific Learning Corporation's software.

[0007]

20. Wow!!

"Perhaps the most public conflict between parents and adult autistics came in a lawsuit brought by several Canadian families who argued that the government should pay for their children's A.B.A. therapy because it is medically necessary. Michelle Dawson, an autistic woman in Montreal, submitted testimony questioning the ethics of the therapy, which the Canadian Supreme Court cited in its ruling against the families in November.

Ms. Dawson's position infuriates many parents who are fighting their own battles to get governments and insurance companies to pay for the expensive therapy.

"I'm afraid of this movement," said Kit Weintraub, the mother of two autistic children in Madison, Wis.

Ms. Weintraub's son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from "The Lord of the Rings."

[HuckleB]

35. The ABA contingent is incredibly fanatical.

It's understandable from a parent's perspective, though. They are grieving, and they want a cure. They want a fix. ABA overpromotes itself, because a couple of studies showed some "effectiveness," so parents jump to it. Anyone who has worked with the population has seen parents grasping at every straw offered to them. It's difficult to blame them, in my humble opinion, but the ABA crowd has always scared the crap out of me.

[rqstnnlitnmnt]

94. for good reason

Give ABA more credit. Conventional special ed classrooms engage in crisis management. ABA teaches independence. It's still relatively new, hence the lack of exhaustive research. Give it time.

ABA works. I use it (I teach kids with autism) and I've watched it work. I think we're fanatical about it because of the amazing things we've seen in our kids that have come about from using ABA principles. It necessitates one-to-one teaching, careful analysis of behavior patterns, rigidity and predictability.

I love my job, and I love my kids. You're right -- the parents want anything to help their kids. It's so utterly devastating, someone who doesn't have a kid with PDD/ASD will never fully understand it.

It's my job to make sure that my kids are as independent as they can be. In my opinion and from a huge amount of personal anecdotal evidence, it works and can be used to teach anything.

[HuckleB]

99. I know ABA inside and out.

It's adherents have spent ridiculous amounts of time aiming derogatory slings at other techniques, including the very successful Structured TEACCH method used next door to you in North Carolina. It has its benefits, but it is not a cure all, and it does not have enough checks and balances in most parts of the country, which can lead to abuse by individuals. It's one tool, and it can help some, but more recent research is indicating that it ain't all that in the long run.

[Old Mouse]

105. Do you know of a company

called Scientific Learning?

[phylny]

107. I'm a speech-language pathologist who's used ABA, AVB, DTT, and have also

been to Carbone's workshop #1. I use principles of ABA, AVB and Discrete Trial Teaching every day in my work, HOWEVER...the biggest drawback that I see with ABA, and especially AVB, is that while it may help most kids with autism become more verbal, or be able to learn, it's not going to help every one of them. This of course sounds logical, but the people making money off of the program (consultants, and Dr. Vince Carbone) sometimes lend false hope to people, and parents insist that providing 25 - 40 hours of therapy a week should be mandatory, because it'll cure their child of autism. Additionally, if the child works with only adults, they are less likely to acknowledge their classmates, and will only answer to adults.

Parents want their children cured, and become very upset if a district wants to use a different approach. They think ABA or AVB will "cure" their child, because they went to a workshop, and they saw video, and the child in the video was doing GREAT!

Well, most likely that child wasn't severely autistic, but the parent of the severely autistic child sees the video and, naturally, wants THAT for their child, and wants the school district to fund the entire program.

It's just really tough sometimes for parents, districts, and most of all, kids.

[Guaranteed]

197. My mother is a behavior modification specialist.

Has been for almost 20 years. She's worked with hundreds of autistic children, and ABA works wonders. It's very, very powerful.

[proud2BlibKansan]

79. There is a huge movement

among the parents of deaf kids - and deaf people also - to oppose cochlear implants. Can you imagine - a way to 'cure' deafness and some folks are speaking out against it?

[Banazir]

139. But cochlear implants don't necessarily cure deafness

But cochlear implants don't necessarily cure deafness to begin with. And when they don't work, you can have all sorts of nasty side-effects as well as hearing annoying and distracting noises but still be unable to understand any of it. The opposition to it isn't so easily dismissed, especially since there has for so long been a movement to keep deaf people from learning sign language, all of which sometimes leaves them with no language later on if their parents have pinned all their hopes on hearing aids, implants, lipreading, and speech when those things don't necessarily work.

Also of course a person who has been completely deaf their whole life isn't likely to benefit from being cured any more than a blind person is. By that time the brain is not used to processing that sense, may be using that area of the brain for something completely different, and the result is a sensory overload and sense of mental disorganization that I doubt anyone who hasn't experienced it can imagine. That's why some early-blinded people after being cured in adulthood beg to be blind again: Having all this visual noise coming at you and being able to understand next to none of it can be more unpleasant than not seeing at all.

So, again, the issues are not simple.

[proud2BlibKansan]

145. I know it is complicated

but it seems pretty simple to me - if you want your deaf child to be able to hear, get the implants. If not, don't.

Sorry - but I just don't get it when parents allow their kids to remain disabled.

[noonwitch]

22. At least, research should be done into potential causes

Even if no one is looking for a "cure". The reality is however, that teachers, doctors, etc. need to know more information about both autism and asperger's in order to teach and treat those who are affected by the conditions and work with their families. Autistic kids can be really frustrating for parents to deal with.

It's also one more lesson for medical science about different ways in which the human nervous system/brain works. We never know how what is learned about autism/asperger's today affects research into other conditions later.

[Ilsa]

24. I'D GIVE MY LIFE FOR A CURE FOR MY 8 YEAR OLD SON!

The last five years have been "almost hell". My marriage has suffered over how much it takes to care for my child. The school is doing everything they can to help him. He has pervasive developmental disorder, which means he is smart, but he can barely communicate or understand language. Can you imagine how frustrating that is for him and us? He also has behavioral problems, being prone to aggression. He has no "friends".

My son has to be on meds in order to be still long enough to sit for five minutes to learn and to keep him from acting aggressively toward us and his teachers and other students and little brother. I nearly went insane before we found an answer to his EXTREME hyperactivity, and Strattera is the only med to help.

He will require SSI disability when he is older. He will probably live in a group home. I will die heartbroken over his inability to control his destiny. If any of you "don't treat it" people had to walk in my shoes for one day, I think you'd feel differently. Try being an aid at school for one of these kids for a couple of weeks and you'll understand.

For those who don't want a cure, fine. Don't take it. But my son is as disabled as a child with cerebral palsy or schizophrenia.

[blue neen]

28. I understand your situation.

I work with children who have autism and PDD. It can be a very stressful situation for the family and other caregivers.

I hope that you have support for your family. It can make a world of difference for you.

Everyone worries about their child's future, but parents of a disabled child have extra worries. :hug:

[Ilsa]

40. Thanks for understanding.

My mom is dead, and my father is too old to help. My husband's parents can handle my kids for brief periods. My younger siblings do not have kids and are not nearby. My older siblings are distant, and one is childless, the other is an empty-nester.

My husband's siblings are disabled from a brain injury, and the other has a child and three step-children, so his hands are full.

The closest we have is a niece who is married and wonderful with the kids. She is named guardian if anything happens to us, but she is in college 20 years old and very busy. I don't get much of a break except when they are in school. My career as a nurse is practically gone, at least for now.

While I was typing this my son broke the headphones to listen to music on this computer.

[HuckleB]

39. I hate to post this for you, but I must.

Too Much Stress May Give Genes Gray Hair
http://www.nytimes.com/2004/11/30/health/30age.html?ex=1103691600&en=8c72da65bc6e3a12&ei=5070

Alas, the researchers used mothers of "disabled" children to "prove" their hypothesis.

Best to you.

[Ilsa]

43. That's okay. As a nurse, I appreciate that information is a tool

to be used to improve one's life.

I am fortunate in that I have always looked younger than my age. I took good care of myself as a young woman, and I exercise alot and eat well. My body mass index is below 24. I work at reducing my stress levels, but do not be deceived, this is a hard life.

[tavalon]

46. And the worst thing is that the medical community I am part of

poisoned these children. For the most part, they didn't have to be this way. It destroyed my faith in my religion, my scientific religion.

[nashville_brook]

48. i replied above that my best friend has an aspie son

and he's quite a jewel -- but i also know a woman with an aspie son who sounds more like yours. he's very aggressive and his obsessions are more pronounced. they have had him in all kinds of private schools (i know some of his teachers too), and he's not been able to work the social situations.

my half brother who is 34 now has autism along with a whole host of other psychological problems (we think he might have been abused -- he's definitly got more going on than aspergers). we did everything we could for him and had to finally accept his level of functioning. heartbreaking is a word i would use, for sure.

i totally get your situation! i think there are levels of aspergers -- and folks who don't have it so bad see it as an asset.

here is a good resource:

http://www.vanderbiltchildrens.com/interior.php?mid=302&PHPSESSID=21b0d359008512f2db37f03f61969855

[TrogL]

77. Behaviour management...behaviour management...

Lots of links to ABA. I'm not sure how good a resource that is.

[Ilsa]

92. My son doesn't have Aspergers,

he has PDD. He can barely communicate, and his verbalizations have gotten worse recently, and we don't know why.

[Name removed]

100. Deleted message

Message removed by moderator. Click here to review the message board rules.

[phylny]

108. How old is your son, if I may ask?

[Ilsa]

109. He is eight. (it was in an earlier post). n/t

[The Flaming Red Head]

93. What about the liver complications with Strattera (he's only 8)

Check it out. It's a big deal.

[Ilsa]

95. Thanks, I will. I already know a little about this, and I am

very careful to work with the doctor to keep his doses as low as we can keep them. We have also discovered that he tends to do better with the dosage split up.

[HuckleB]

101. Link? Research? -nt-

[Banazir]

141. Why do you think you know anything of our lives?

And why do you think you know someone's future when they are young?

If you don't want him in a group home, campaign against group homes and try to get alternatives in place. I'd be living in a group home right now if it weren't for parents who did exactly that, and I could be living in one or worse again if Bush has his way. Do something about our situation rather than telling us we just don't want 'treatment' and completely misunderstanding our position. (Did you read the part saying we did want help, that some of us really struggled to learn to communicate, anything? See the highlighted parts of the post near the bottom if you somehow missed these facts.)

I've been told that I'm pretty much like a quadriplegic only I can move. Does this make me want a cure? No. I want a good life. Why this requires having a brain that functions like most people's brain functions is completely beyond me. Learning communication is not a cure. Learning other things is not a cure. Having a good life is not a cure. When will people grasp that we are autistic too, maybe at some point in our lives are not or were not all that different from your children, and that we're not saying don't help your children?

Or is it some kind of lost cause to say that it's possible to help someone without making them non-autistic? I'm supposed to be the one with the cognitive problems and I can see the difference between helping someone and curing them. I don't get it.

[proud2BlibKansan]

146. See my post #145 above

How can any parent not want a cure for a disabled child?

My heart goes out to you.

[Banazir]

148. And all disability comes from within of course...

...despite the fact that most research has shown that disability is the interaction between a person and their society. I've known of people who would be considered severely disabled in contemporary American suburban society, who were not considered such in their own communities. This is not because the people were any different, but because the community planned for a wider range of people. I can imagine communities in which perfectly normal traits were considered disabilities. This has been shown throughout the world to be the case.

As in your post #145, you seem to want to make things simple. Black or white, to borrow a phrase that oddly autistics are usually the ones accused of being. If it's called a disability, let's cure it, no matter if it's fundamental to the way a person's brain works, no matter if the cure is often worse than the condition, no matter if a cure exists, no matter if constantly seeking to 'repair' the person makes them feel defective for the rest of their life, no matter if the 'cure' actually just consists of making them waste all their energy faking normalcy so they can burn out at the age of thirty and be worse off than when they started, no matter if 'cure' amounts to a brain transplant, no matter if there are plenty of ways for the person to learn to communicate and live a happy life and do other things they want without turning them into a non-autistic person. Just cure it because if it's called a disability it must be a detachable appendage and it must be all bad.

(Hint: Autism is just a word. A word for a certain kind of brain, that produces the observable characteristics that are written about in the DSM, but those are often only the superficial aspects. It also produces differences that go to the core of perception, cognition, and response. That's why most autistics are quite aware that there is no separating autism neatly out from who we are. Any more than you can separate anyone from fundamental and pervasive ways their brain is wired, whether they're called autistic, dyslexic, 'mentally retarded', or anything else. There is nothing at all detachable about autism, although a person can learn within an autistic brain structure as well.)

Autistic activists are actually not giving an awful or depressing message. We are giving a message of hope: That it is possible to learn and still be autistic, that it is possible to be happy and still be autistic, that it is possible for anyone to live outside of institutions and group homes if people would only make the changes necessary, that it is possible to learn in autistic ways that far surpass what one autistic refers to as a pale imitation of normalcy. We are saying there are more than the two choices of hopelessness and cure. We are offering an alternative to the desperate search for a cure on which a person's only hope seems to ride. We are saying there are more options, that people can tone down the desperation and the all-or-nothing thinking and still help their child live a good life.

Some people reject that, saying "No the only two choices are cure or misery." I understand their fear, but I also fear for their children. It becomes a self-fulfilling prophecy, when no contingency plans have been made for the child's happiness in the absence of a cure. As someone who was taken around to a bunch of people who tried to cure me as a child, I would have far rather learned the skills it took to succeed as an autistic person, and different measures of success than the impossible ones I was always being held up to.

...but people can often reject the beautiful complexity of the world in favor of an all-or-nothing solution. The trouble is it is autistic people who pay for this way of thinking. That's why we have autistic human rights activism -- for those of us who have been outright brutalized because it was supposedly the only hope of a cure, for those of us who don't want future generations of autistics to grow up and live in institutions, for those of us who don't want to deal with another wave of suicidal autistic adults who were said to be "cured" in childhood and are puzzled by why they remain autistic or whose parents searched for a cure so often they decided they themselves were at fault for not living up to their parents' expectations, for those of us who really really want parents to see that there are more than two options (misery and cure) and that the two-option model harms all autistics, we know that what we have seen and experienced is important.

But some people think they can sweep all of this complexity away with a wave of their hand and the word 'disabled'. No. The complexity will remain because the truth will remain. I just hope that in 20 years the generation of autistics who are kids now will arrive at adulthood with some sense that they are worthwhile human beings, not broken objects in need of fixing or tossing out. Which, by the way, is the message many of us (including those presumed not to notice or care) receive from constant attempts to cure us.

But again, you can decide to sweep this all away with the word 'disabled' and simplistic medical-model logic. But we will not be swept away, and we will have to live with the consequences.

[proud2BlibKansan]

158. 'CURE' is not the right word

We have an obligation to enable kids to function as independently as possible as adults. That means helping kids with disabilities achieve a level of independence. It is immoral to do anything less.

[Banazir]

150. Loving parents who didn't try to cure their autistic children.

http://www.isn.net/~jypsy/ourstory.htm
http://autfriends.autistics.org/wesley/
http://www.autistics.org/library/pschwarz.html
http://www.autistics.org/library/mother.html
http://www.neurodiversity.com/
http://www.autistics.org/library/acceptance.html

These are parents with children diagnosed as all over the 'spectrum'. They are dedicated to teaching their children, to making their children's lives better as well as those of other children, to a whole bunch of other things, but not to turning their children into non-autistic people. They are only some examples, there are many more.

[gorbal]

159. Here something I like

I like how autistics.or has a whole weblibrary of links on "autistic culture"

http://www.autistics.us/links2/Autistic_Culture/

[proud2BlibKansan]

160. No one said they should be turned into

non-autistic people'. These stories you just posted contain many examples of parents working to find therapies and treatments for their children. That is what I have advocated as well.

Parents who deny their children are disabled are also denying them the therapy that these stories prove can work.

[gorbal]

162. Maybe YOU didn't.

But there ARE parent's out there who believe what is best for their child is that they become NORMAL. They may love their child, but there must be discussion as to what is really best for them.

[proud2BlibKansan]

163. Parents who think their kids with disabilities can become normal

are in denial. But at least they are giving their kids therapy and education. Parents who deny the therapy are committing the greater sin, IMO.

[Banazir]

165. Depends on the 'therapy'.

I was certainly worse off after a lot of the 'therapies' I was given, many of which are considered good for autistics. Plenty of parents will try just about anything because they think it is more loving to do anything than nothing, but it really depends on what that 'anything' constitutes.

[proud2BlibKansan]

166. But to do nothing

and pretend your child is 'normal' would be much worse, IMO.

Or to expect the world to suddenly become accomodating.

[Banazir]

182. It does really depend, but I think you're looking at it as too clear-cut.

I don't know if you're aware that some 'therapies' for autistic children involve outright abuse or not. Some parents can be fooled into believing that because the child is autistic, abuse is worth it. When I say abuse I mean things like being zapped with cattle-prod-like devices, beaten, and various other forms of direct physical abuse. These things are still done in some places, and some of the 'therapies' I have been through involve these things.

I repeat, it would be better to do nothing than to abuse children, and some forms of abuse of children are still considered a therapy by some people.

Of course, almost nobody really does nothing anyway, so it's a moot point. But the notion that parents must do something, anything, leads some parents to choose things that would be illegal if they were done to a non-autistic child. It would be better if they stuck to just raising their child the best they knew how, rather than subjecting their child to things like that. But it's not like those are even the two options anyway, so I'm not entirely sure why that needs explanation.

Not all parents who raise autistic children call the education of their children therapy. Nor should they really, it seems like a weird thing that if a non-autistic person learns how to do something it's because of education and if an autistic person learns how to do something it's because of therapy, despite the fact that education and therapy might look suspiciously similar. You can't really say that these parents are neglecting their children either, they're just perhaps more accurate in their terminology than most people are around autism.

I'm not sure why it's necessary to explain any of this though. I hope you don't honestly think that physical abuse is better than just raising your kid. And I hope you don't honestly think that there are a lot of parents out there being driven to abandon their child-raising duties by the notion that they can either have their children in 'therapies' or totally neglect their children, and that to have their children in 'therapies', no matter what those 'therapies' are, is always a better option than what they themselves might think of. It's not as if it necessarily takes a trained specialist to raise an autistic child properly, and there are a lot of parents who figure out what to do by discussing things with autistic people or other parents (or autistic people who are parents, since that happens too), and then applying various things to how they raise their children.

But at any rate, I'm having some trouble believing you really think the two options are "therapy no matter what the therapy is" and "treating the child as if the child is non-autistic and neglecting anything they need related to autism". Maybe you do, but it seems like an odd thing to think. So maybe I didn't need to go through all this explanation.

[proud2BlibKansan]

188. No I don't think that at all

I realize it is a complicated issue.

And no way would I ever advocate abusing kids.

[gorbal]

195. I should have posted my thoughts more clearly there.

There are parent's out there who go to far in trying to make their kids be like everyone else.

[Banazir]

164. Cure = turned into non-autistic people.

If you and others on this thread happen to have misinterpreted the original article, somehow skimmed over the parts where autistics said yes indeed there are difficulties involved in being autistic and yes indeed we need help, just not help that turns us into something we're not (i.e. cure, i.e. non-autistic), that's not really the problem of autistic activists. And yes, people did say they should be turned into non-autistic people. People say that all the time. It's what cure means. It's also what people mean when they say outright that they don't want their child to be autistic.

As for whether a person is considered disabled or not, I consider it pretty much entirely a semantic point that only matters when you're applying for services. Plenty of people go both ways on that and still help their children no matter which way they go. I personally don't think either "autism is a disability" or "autism is not a disability" is a particularly meaningful statement to make, but then I don't view disability as a noun in that sense nor do I think debates over that kind of thing are anything but pointless outside the realm of securing services.

But then plenty of people who seem to actually agree with our goals start saying things like "but autistics do need help" and "autism can be difficult" and other things they seem to think we don't realize are obvious. I still don't know why.

[proud2BlibKansan]

196. Semantics are pretty important

especially if parents want to apply for disability income for their kids.

[Mr_Spock]

200. ...and the most important thing relating to your son or daughter is money!

I say that chock full of irony and cynicism, yet I am caught in the dillema myself. I am not so sure of how "self-aware" my daughter is of her own being, and I know that without some careful intervention including the help of the school system, that we would have had to make some very difficult decisions WRT her schooling. They call it ADHD with other tendencies, but anybody with a brain can see that she is completely oblivious to social cues and societal "norms". We can't get any sort of true diagnosis because of the "overdiagnosis" people - including many here. Whatever. We carefully pick her teachers, classmates, and she is on Ritalin and Lexapro (for suicidal actions at age 7!! and other "interesting" behavior similar to mine at her age!) and she is also recieving neurotherapy. I know she'll never be "normal", but the ex is sure that she will snap out of it someday. I don't even care what people think WRT whether she should want to be normal or not - she is not even aware that she has a choice!!!!!!!!!!!!!!!!! Until she expresses her desire otherwise or is old enough to do what she wants, I am going to give her every bit of help I can that may make it easier for her to survive in this society. It is my responsibility as a parent to do what I think is best for her - and to me that means giving her the MOST options possible. I'm sure someone who is more profoundly affected will criticize us for daring to think we have any issues, and others just barely on the "spectrum" will do the same - whatever, it doesn't surprise me given the lack of empathy that many people on the "spectrum" express. I wish there were a more accepted and uniform way to help ones child (and oneself) without having to essential be ones only spokeman, but this is the way it is and likely will be for a long time to come.

Banazir, yes, it should be obvious that all people on the "spectrum" want is some help, but not with the intent of curing us (no matter where on the spectrum), but few things that seem obvious to people on the spectrum are obvious to neurotypical people. They can be so thick-headed and arrogant at times - oh, well, they can't help their "condition" any more than we can change ours. :D

[Banazir]

205. As I said...

Pointless outside the realm of securing services.

I'm on disability, I'm just saying that outside of that very medicalized and bureaucratic realm it does become pretty semantic.

[Seldona]

25. And just think,

when shrub passes his mandatory mental health screening nonsense these people will be subject to every quack and pharma company touting 'cures' at pain of being taken away from their families or worse.

Brilliance eh?

[Burma Jones]

26. This is a Great Story, I have a 6 year old son that exhibited

autistic behaviors that were recognized when he was about two and a half. He was asked to leave a Montissori School, at that time, my wife and I were pretty crushed, mostly because he really enjoyed the school and he was very hurt when we told him he couldn't go there anymore. HOWEVER, we were fortunate enough to be living in Westchester County NY at the time, and they provided excellent services. So, he ended up in full-time pre-school from age 2 1/2 on. We have also provided him with speech and occupational therapy that did not so much attempt to "cure" him as to show him, at a very early age, to best use his own processing to best understand the world around him. This therapy, particularly from a woman in Rye, NY, was critical. Even if the child "grows out" of certain behaviors, which most do, if you berate that child as they struggle with the behavior, you are creating a very angry person........

Now, what really spoke to me in this article was the insistence by the Aspies that they are NOT diseased. As we went through my son's therapy, it became crystal clear to me that my son had (to use a Computing analogy) an enormous hard drive, endless RAM and a non-standard processor. What we had to do was to learn his processor's qualities and help him to use them. It helped that I worked at home and it helps that we had the ability to spend some extra cash on extra therapy. Oh, by the way, all the intensive therapy that my son received has also, somehow, helped our "typical" daughter to read at a first grade level at age four and she shows great empathy for other children. She is an outstanding communicator.

What was of ultimate importance was that my wife and I controlled our frustrations at raising a child that had some very different wiring. And trust me, it was exceptionally frustrating. When I think of how often I was spanked by my parents because I exhibited ADD behavior, I shudder at the thought of how many of these children have been horribly abused by less capable parents than I was fortunate to have.

When I read of this Weintraub woman and her insistance that her son conform in something as inconsequential as a Halloween Costume and to hear her assertion that "it's no fun being different" I just want to go and (to quote by 97 year old Grandmother) slap her face.

Our son is almost seven now, and is socially a little awkward, although his teachers tell us that he is well liked by his classmates and has been able to exhibit "appropriate" behavior for a first grader. He is in a private school because the class size is 14 rather than the 30 he would have in the public school. He takes 'Cello lessons and has lately become a little obsessed with Football. He is now not considered to be in the Autistic Spectrum, but his therapists tell us that he basically will exhibit some Autistic traits throughout his life.

His Grandparents, Aunts and Uncles would comment on how remarkable his improvement was at every holiday. They would see him every three to six months and they would just gush on how much closer to "normal" he was getting. This always irked me. First off, the term "typical" is indeed a much better description for kids, like his little sister, that do not exhibit autistic behaviors. Second, some of these relatives, well meaning as they were, would have that sort of tone of voice that would be reserved for talking about some sort of disease. Well, having experienced a mild form of this so-called disease, I can whole heartedly agree with those that insist that high functioning Autism is not a disease.

[Runcible Spoon]

60. this is such a difficult situation.

I don't know about the Asperger's movement, but I know there is a movement in the deaf community that wants to be recognized as an ethnic community rather than as a disability category. They say they have their own subculture and language, and some even go so far as to want to genetically design deaf children. I don't know about the latter group, but I think that there is a serious problem with the way that some anomalous humans are marginalized as opposed to included in a more encompassing definition of "normal".

[Mr_Spock]

66. The reason Aspergers is controversial is that many NEED help

that costs a lot of money. Some don't. If you can get a "classification", that gives you a tool to force the schools to do something to help your child. We had to do this for our daughter - even though we know that there is a possibility that she will be stigmatized by this at some point. It's a fine line one needs to walk. At least the special interest we have shown in getting her tested and picking the appropriate teachers and classmates has kept her from being kicked out of school as we have made it the school's responsibility as well.

[proud2BlibKansan]

68. Of course they don't want to be 'cured'!!

Their reality is to be different. No one likes change, even if it is for the better.

I teach special ed and have some experience with Asperger's kids. Yes, they are bright and capable. No, they are not that 'disabled'. BUT they are social outcasts. They don't know how to make friends and engage in socially unacceptable behavior. They are teased unmercifully by their peers. They are impulsive and make poor decisions. Recently, a kid in my class stood up and dropped his pants right in the classroom. He thought it was funny. No one else did.

The goal of an education is to equip kids with lifelong skills to enable them to be independent and successful adults. Social skills are one part of a good education. So yes, I believe it is very appropriate for schools to help kids with Asperger's learn how to function in social situations.

And since life in the real world is about meeting and getting along with all types of people in all types of situations, how fair is it to exclude kids with any disability in a setting where they are surrounded by peers with disabilities? How fair is it to tell them that they are okay, but the other kids who tease them are NOT? Yes, we need to teach all kids to be more tolerant, but why not help kids like these in this article learn how to make friends also - instead of teaching them that they don't have a disease or that nothing is really wrong with them.

No, it is NOT okay to take your pants off in public, even if you have Asperger's. And this kind of behavior explains this comment made by one of the kids in the article:
"They suffer because they're depressed from being left out and beat up all the time."

That sure sounds like suffering to me. What difference does it make if we call it a disease or not? The important thing is to help them so they won't be "left out and beat up all the time".

[Mr_Spock]

72. I agree and put a lot of effort

into giving my daughter "tools" for dealing with certain situations. It helps that I was like her as a child. I have NO tolerance for the type of behavior you described above - she get's a strict "fly right" talk when she does things like that. On the other hand, your arguments are a little too black and white for me - there are so many places that a person can fit into society without being a social butterfly. Socializing for an extended period of time STILL makes me want to explode inside and I often will flee back to my privacy when overloaded. This is normal for Aspies and WILL NEVER change for the rest of our lives. Socializing is like doing calculus all day long - it gets tiring quickly (though I can actually do math all day long without being bored of it!).

[proud2BlibKansan]

73. Of course I don't agree with

trying to turn them in to social butterflies. But they do need some social skills training. And they need to understand they are different. It just didn't sound to me like this special school in the article was doing that.

[Mr_Spock]

82. Yes, they should be teaching them skills to cope with social situations

I agree wholeheartedly.

[Banazir]

126. Not just social situations.

Learning to communicate in comprehensible ways (which I suppose is social, but it's not what many mean by social -- I also don't mean just speech, which I can't use for that purpose) was the most integral and important thing in my life. Because learning language and learning to direct my life means even if I have trouble with other things, I can still have my decisions respected.

Also there are plenty of life skills that are difficult, or impossible, for many autistic people. I find eating way more important than social skills, but who knows.

Also of course the skills that are not recognized by most: Pulling information out of our environment, responding to our environment, and so forth. That can be very important in order to do anything else. Dealing with overload and shutdown and learning to avert the worst of that is also an important life skill for many autistic people. Unfortunately many of the ways of dealing with that don't "look normal" so they are often discouraged in the name of teaching people to fit in. However, learning to deal with these things can make us more able to do more things than if we spent all our energy on the sorts of things we are often trained to do in behavior programs. Which I think is the point of the article: Focus on that which is most important.

[Deja Q]

75. Society creates pills that mask symptoms... society needs to

change itself instead of forcing others to conform into it, even if the drugs are catastrophic to one's body.

Pro-life and culture-of-life my ass.

[KamaAina]

76. People with autism, not "autistics"

We do not allow our disabilities to define us. The same principle goes for any other disability: "people who are blind", etc.

You might be surprised to find out how many of your fellow DUers are people with autism...

[HuckleB]

89. YES! Thank you.

I admit that I usually don't bring this up anymore, when these discussions occur. I tired of it. I know I shouldn't but, I did.

Salud!

[Banazir]

115. People-first language assumes...

People-first language assumes (this paraphrased from elsewhere)...

1. That autism is so bad that it is incompatible with personhood (without reminders).

2. That autism can be separated from the rest of the person in some neat and tidy way and you can have the same person left over.

3. That autism is more an incidental part of the person than anything substantial part of the person.

No, autism is not everything of who I am. But it is at least as integral to me as being female. So while I am a woman not a person with womanhood, and an American not a person with Americanity, I am an autistic person or an autistic not a person with autism.

Person-first language was imposed on us from without by people who felt the need to separate autism from person in order to reaffirm that we are people. An autistic is always a person. I am an autistic or autistic person, this terms does not bother me any more than I am a woman or I am an American or I am an epileptic or I am a disabled person, all of which and more are true. I do not view autism as something I must hold at arm's length in order to prove my personhood or my separateness to it, and I view person-first language as mainly a misguided attempt to do exactly that, to prove personhood by holding a part of a person apart from the person. I don't need to hold autism apart from me in order to show that I am a real person and that autism is not all of me. Most women do not feel the need to separate their womanhood out in order to prove their entire life is not defined by being a woman. I think if someone cannot see that I am a person, flipping the words around will not help.

Blind people have long ago tried to get rid of "people with blindness" and other contorted language. Deaf people likewise. Most physically disabled people likewise. Tiptoeing around the language is usually a subtle sign of devaluation rather than a sign of celebration of real personhood. Celebration of real personhood would mean that you knew a "Deaf person" was still a person without having to flip the language backwards.

[KamaAina]

121. Michelle Dawson addresses this very point in the article

she asked the reporter if she was a "person with femaleness". :-)

Then again she is Canadian, and I understand the debate over language has gone rather differently in the Great White North.

At the end of the day, "autistic person" would still work (for me), but not "autistic" (think "black people" versus "blacks").

[Banazir]

123. Yes, many of us end up asking things like that.

I am very glad Michelle Dawson and some others were quoted in that article. Michelle is a near-literally tireless self-advocate.

Actually many Americans started asking that question as well a long time ago. I think it depends on which part of disability rights you end up involved with, what you get exposed to. I got exposed to non-person-first language early so I'm used to it and prefer it.

[Matilda]

124. Ah ... just as we would describe anothe person as a musician,

not a person with musical ability.

It is not the whole of you, but it defines an important - perhaps
the most important - part of who you are.

[amazona]

78. I have to agree with them

I realize that it depends on where you fall on the autistic spectrum, but I would not choose to have a different type of brain. I just ask to be left in peace.

[rqstnnlitnmnt]

91. I spend 8 hours a day with kids with autism

and I think that what this article fails to mention is that the kids with PDD/ASD who they interviewed are really exceptional individuals. I work at the Virginia Institute of Autism, which is a non-profit school here in Charlottesville that was started by a few parents of kids with autism. We provide services for about 25 kids, each paired up with a staff member. I don't have any statistics about the population of individuals with autism who are "high-functioning," but from my experience at least none of the kids at my school are even aware of their label. Even the most developmentally on-par kids at my school aren't aware of the label they carry with them.

It's helpful that towards the end this article the author talks about the DSM/psyc101 features of PDD/ASD; unfortunately she insists on painting the Rain Man savant portrait of ASD. The nature of the spectrum is so much more debilitating and crushing than you can ever imagine.

At our school, we employ a method of teaching called Applied Behavior Analysis (ABA.) It's the opposite of conventional Special Ed. It incorporates all of what we have learned about contingency, reward vs. "punishment", behavior chains/routines, etc into a coherent teaching strategy that allow the kids not to ignore their inner drives, but to engage in socially unacceptable behavior only during times when it is appropriate. Our goal is not to program the kids into blank faced automotons who are filled with energy, but rather to allow the kids to gain and build independence in every aspect of their lives. These kids are able to learn this way (it's perfectly predictable, routine and structured and builds in time for independent play) and it DOES allow them to have more independent and more fulfilling lives.

From reading an article like this, it seems that allowing kids who are able to encapsulate their personality into a cogent theory of self allows their savant skills to fluorish. That is simply not reflective of the reality of PDD/ASD. It is true that for the most part, you will find that kids with PDD/ASD seem to be wired to enjoy or excel at a certain activity or subject. Kids who lie in one very narrow part of the spectrum are able to understand that their interest/obsession is unique, that they are different from their peers, that they are autistic, etc. What necessarily goes hand in hand with this is a less pervasive disconnect from reality, therefore a greater ability for self-regulation. In short, they are able to understand that their quirkiness is somehow socially isolating/aberrant.

Our kids just don't have that. What it comes down to is not "act autistic," but rather being aware that certain behaviors when not appropriately regulated are socially stigmatizing/somehow bad. The kids featured in this article clearly delineate themselves from "neurotypicals" and unfortunately, the article frames it as some self-actualizing escape from the chains of special ed.

Leaving kids with autism to their own devices and explore their "autistic" side not only ignores the issues that the vast majority of the population of PDD/ASD individuals face, but also is dangerous because it blinds people with little or no experience with PDD/ASD to what they are really like. For most of our kids, it's not about creativity or cultivating their "autistic" sides. It's about independence and self-reliance.

[Ilsa]

96. Excellent post.

Thank you for your explanations. And thank you for your service.

[Banazir]

116. I spend all my life being autistic.

I spend all my life being autistic. I have been in institutions and special ed. If you think people do not understand their autism exists, you may be underestimating them (many do, not an insult).

Working with autism not against it does not mean savant skills. I have no savant skills and I am quoted in the article. It means learning to function as efficiently as possible without being abused in the way of doing so. It means it really is part of us just as anyone's makeup is part of them. It does not depend on what gets called functioning level. (I have had both labels. As I said elsewhere, I am non-speaking, frequently incontinent, need a lot of assistance, etc.) I only truly learned communication skills from other autistics. They understood that instead of forcing me into a weird shape for no apparent reason I needed to learn the very basics, the ones non-autistic people rarely even know exist because they are second nature to them. I spent time around friends in special ed who were labeled non-communicative just because their very different communication was not recognized. They were punished awfully or treated as defective. This does not help anyone. Anyone who said these students were unaware of being different was unaware of how aware a lot of us were. People do not understand. They think we mean no help. Read in the article, it does not say no help. It says different help. There's a difference. Valuing autistics does not mean stagnation any more than valuing non-autistics in childhood means letting them eat candy all the time just because they want it. Autism is dynamic, autistics grow, and our self-awareness can be more than anyone on the outside imagines. Not that there is a normal person trapped inside autism or any of that nonsense, but that there is a lot more awareness than we are usually given credit for.

[imenja]

161. Thanks for your post

I have learned something very valuable from reading your post. I had no idea that people whose communication seems so limited to many of us had the sort of skills and abilities that you clearly do. I'm grateful to have learned something so important.

[NashVegas]

202. Thanks for your post

The drive for communication is perhaps the most underestimated facet of human nature, I've often thought.

[BobFred]

106. autism is to hubris what sickle cell is to malaria

[TrogL]

151. huh?

:wtf: is that supposed to mean?

[Guaranteed]

198. I think he's saying that autism innoculates people from

arrogance.

[Mr_Spock]

199. Hehe - that's a very "liberal" interpretation

I'm a bit leary of "interpreting" what a 2 time poster (who's said the same thing both times) meant. You may very well be correct though - who knows? :D

[Deja Q]

110. the ultimate cure will be a genetic test to prevent children from being

born.

Very astute, the article.

I've nothing left to say. Our society is an utter two-faced joke.

[DemBones DemBones]

122. Which certainly is a two-faced joke.

Killing the disabled -- well. it worked for Hitler, I suppose.

[Banazir]

129. A reminder about functioning and all that.

Some quotes from the article (emphasis mine, edited to add more I forgot):

"It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition."

"The autistic activists say they want help, too..."

""What they're saying is their goal is to create a world that has no people like us in it," said Jim Sinclair, who did not speak until he was 12 and whose 1993 essay "Don't Mourn for Us" serves as a touchstone for a fledgling movement."

"But the autistic activists say it is not so easy to distinguish between high and low functioning, and their ranks include both.

In an effort to refute parental skeptics, the three owners of autistics.org, a major Web hub of autistic advocacy, issued a statement listing their various impairments. None of them are fully toilet-trained, one of them cannot speak, and they have all injured themselves on multiple occasions, they wrote: "We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic.""

Unfortunately, it's way easier for most people to refute our statements by claiming we are something we are not (or are not something that we are), rather than actually looking at what we have said and what we want. This is common but it is not very effective: Untruth does not stand up very well against truth, and the truth is that autistic human rights activists have been put in nearly every category of autism there is, have endured institutions, and so forth. It seems more like a case of shooting the messenger than truly listening to the message.

What is so threatening or disturbing to people about the fact that all autistics and indeed all people are human beings with human rights the same as everyone else, and that we do not think that any condition could abrogate those rights? What is so threatening or disturbing about working with the way we are instead of force-fitting us into something we could never be? Why do people have to insist we are all Einstein clones or else that we are saying we don't need any help? Why are so many people who seem otherwise like they would be on our side, convinced that we're doing something horrible by standing up for ourselves?

[mzmolly]

132. BRAVISIMO!

:toast:

[wovenpaint]

147. Wow, thanks for the education on this thread

You've articulated what I've been thinking as I read through all these postings.
It bothers me that there seems to be a limited definition of "normal" in our society. I like what you've said about nuances, that's what I think, too!
Thank you for writing this.
:hi:

[Francine Frensky]

167. So, God made us all in his image, and he don't make no mistakes

A story about a boy named Tyrone:

As a boy, Tyrone was small, but he loved basketball. And he played basketball every chance he got. But he was very short. And as he got older, he didn't grow taller the way the other boys did. And this bothered him.

One day he came home from school crying. His mother asked him what was wrong. He said "I love basketball.... but I'm too short to play!! I'm the shortest kid in the whole school and it's not fair!"

And his mother said "God don't make no mistakes. You just keep on playing".

And Tyrone, "Mugsy" Bogues, kept on playing basketball, hard as he could, until he got a scholarship for Wake Forest, until he started, and was the star of the team, for four years , until he played twelve years in the NBA....

Five feet, four inches tall, and an NBA basketball player...

God don't make no mistakes.

[Lisa0825]

144. This has been a fascinating discussion.

I have no knowledge on this subject myself. I just wanted to thank all who contributed, because I have learned so much here today. I am especially thankful to those who gave their own first-person experiences. There are some really eloquent and thought-provoking stories here. Thanks for teaching me something very valuable today.

[Borgnine]

154. One of my good friends since childhood is autistic.

He can't drive. He'll never be able to live alone. But you know what? He's probably the happiest person I've ever known.

[rqstnnlitnmnt]

185. it's amazing what our minds can do

when there are no external restrictions placed around it.

[gorbal]

157. There is so much variety amoung cases of "autism"

My brother is autistic, and I was diagnosed with PDD-NOS. Some autistics DO suffer a great deal, but it's not from the "autism". Autism is just a classification of group of symptoms which could be the result of many underlying factors.

Many autistics have issues with sensory integration which can involve some suffering. When I learned my brother was autistic, a doctor told me to turn around in circles and then sit down very fast, and that was supposedly what my brother felt like all the time. I notice, however, that less than half the autistics I talk to have issues with dizziness, so there is a great deal of variety within the autistic community. It makes me wonder how often perpetual motion sickness is diagnosed in children and how much such children would really wan't to socialize. I had vertigo so bad I couldn't move for two weeks once, and I swear you couldn't come near me.

Sometimes I wonder if the whole "Autism liberation front" business wasn't designed by people autistics could sue for a crap load of cash if they put their enormous brains together and figured it out. But then I remember how mad I was when I was made to study facial exppressions in middle school, what a waste of my intellectual capital.

Here is an interesting webpage made by an Aspie as a response to being told he had a "disorder"-

http://www.autistics.org/isnt/

[Mr_Spock]

168. I really love that web page! Everyone reading this thread should view it.

I have to paste in his comments at the bottom of his web page as I feel exactly like this guy. Amazing to me also how it took until his 40's also before he was able to "describe" how he was different. I love how he uses the term "experts" to describe the arrogant fools that know what's best for autistics - many have posted here. You "experts" and "professionals" want to help? Start by reading this web page http://www.autistics.org/isnt/ .

"
About This Site

This site is an expression of autistic outrage.

About a year ago I learned I was on the autistic spectrum. Inspired by this discovery, I read everything I could get my hands on about the autistic spectrum. Much of it makes sense-- for the first time in 41 years, I had a description, albeit an unexpected one, that fit me.

But a lot of what I've found out there, mostly written by "experts" and "professionals", has been arrogant, insulting, and just plain wrong. My bête noire of the moment is finding my emotions described as "flat". As someone with considerably greater expertise in my emotions than the "experts", I can state unequivocally that my emotions are not "flat". They are different, yes, but they are most certainly not "flat."

Perhaps tomorrow I'll be fired up over being described as "lacking empathy". Or I'll be outraged at an exceptionally clueless "training" method being inflicted upon autistic kids. Or maybe it will be some new paper written by some "expert" from the perspective that neurotypical perception is correct, and my brain is a genetic mistake.

My brain is a jewel. I am in awe of the mind that I have. I and my experience of life is not inferior, and may be superior, to the NT experience of life.

..."

[Banazir]

170. Minor correction.

She's not a he, and also not someone considered an aspie (her diagnosis is autism since it took her quite awhile to figure out intelligible speech among other things). Not that this takes away from the site, but just since I saw the last two messages those comments.

Also she's the one who designed the Autistic Liberation Front buttons.

[Mr_Spock]

171. Thanks

I guess I'm guilty of assuming that she was a he. It's been over a year since I last looked over that site - I suppose I should re-read it! My daughter won't have to make a page just like that because I am making sure that she is aware of the ins and outs of the world around her - and how people can and will misperceive her. I tell her stuff and she just walks away like she didn't hear me - but I know she does store away what I say for later use.

[gorbal]

190. No that was me

I made the mistake first of saying she was a he. For some reason I confused the person who made this website with another webmaster. Please excuse.

[Mr_Spock]

192. Oh, yeah! Well I knew abou that website over a year ago!

And back then I assumed it was a he too - so there! :D

[jaime_176]

194. Just walks away......

That sounds like my daughter, my son's condition was more severe. But they both tried really hard and are the most terrific persons. I really like who they are as well as love them. A neice has some of the symptoms of autism as well, and her daughter sounds like she may have autism, too. As for myself, I'm somewhere on that autistic spectrum, and have had to take medications for some of the symptoms. Only then can I function in the so-called "normal" otherworld. I used to feel, when I was younger, that I lived inside my head...it was so hard for others to drag me out. I tried to pass....it was so difficult... and so painful...until I took medication and I could actually carry on a conversation, and wasn't driven frenetically by severe panic...because I could not hold onto the "constants" of a world that fluctuated wildly as I attempted to grasp the relative significance of anything at all. Somehow, medication has taken the pain away, that pain of "too much" and a continually referendum in my mind on what I should or should not attend to, and an appreciable difficulty in attending to anything that was not of my repetitive allurement of the moment. Noise is pain, touch is pain, Light is pain.....do you get those feelings? I'm glad your daughter has you to help her Mr_Spock. I didn't take any medication until after I was 35. Finally, I felt as if my feelings, my emotions and thoughts were inside of me rather than me being inside my emotions and feelings. I finally gained a small, no a significant degree of control. A lot of people are negative about medication. I am not lazy. It helps make me more functionally able to exist in this world.

[Mr_Spock]

201. I can so relate to what you have written there.

I am a "super" sensor as well. I also felt GREAT relief from medication - it's the only reason I would even consider letting my daughter take any. It saved my life - ignore others who tell you otherwise. I thought that I would have to be on it for the rest of my life, but I was able to learn from my new experiences while I was on the medication and could apprise all of the inputs at a more leisurely pace. I'm now much better and laughing off and ignoring what people say - especially when they are trying to instigate me due to my sensitivities. Neurotypical people spend a lot of time torturing us extremely sensitive people (who have trouble integrating all the HUGH inputs) - just because they can! My daughter is actually SO much more capable of dealing with stress on her medication. No more suicidal talk, no more wanting to kill people or melting down into a quivering ball repeating the same thing over and over and over and over again! It's (meds) been a small miracle for us and has allowed her to stay in mainstream schools.

For her (and me), the word ANXIETY says about as much as any other word WRT our conditions. A system overloaded with "noisy" inputs cannot function properly.

[K8-EEE]

208. GREAT!! Thank you!

As the mom of an autistic daughter, I get SO sick of the "autism fix-it people" giving me a list of things that have to be corrected about her so that "she can have a normal life." She's not normal....she's never going to be, in some ways she's better than normal.

For one thing, she's the one person I know that doesn't give a shit abuot impressing other people at ALL. LOL! Especially with her sister going through the teenage terrors about what people will think about everything she does, wears, etc....I really appreciate that.

I LOVE THIS PAGE. Thank you!

[bleedingheart]

172. My son has Aspergers...

No meds.
We use therapy sessions.

He has no close friends at all. He literally lives in his own world. His very sociable, will talk for hours about his interests. He prefers adult company to children. He really doesn't know how to interact. He can easily be conned out of toys or into situations because he has no clue on how to "read" people.

He is my sweetie pie.

He is great at math and he has an amazing imagination but he has poor pragmatic skills and things like similies will leave him exasperated. He just started piano and can easily memorize pieces....but yet he doesn't know how to hold a conversation or play with a child his own age.

We have a pool...a boy from his class came over to play..my son never really interacted with him and eventually got out of the pool..basically abandoning the other boy. It is heartbreaking to watch..but from these situations we teach him.

My husband shares a lot of these characteristics.

My hope is that one of his obsessions will become his career and that he will marry a bohemian-like artistic type who will love him as much as I love his dad..and who will help him through the rough patches and be his social guide.

For now he is my buddy and I basically help him out as much as I can to help teach him appropriate behaviors as well as giving advice.

[sendero]

179. Great thread....

... I've been thinking about this for years. How many "psychological diseases" are merely behavior patterns that lie at the edge of the "bell curve" and have been dubbed "diseases"?

I'm "afflicted" with a psychological "disorder" that has elements that are good and bad. Once you understand this disorder, you notice that lots of people have it in varying degrees, and many of them are successful not in spite of it but because of it.

In thinking about it, I've decided that only the most severe forms of the "disease" are a disease at all.

I think the same thing about Aspergers and other so-called diseases. They are merely biological adaptations like many others, but some of them can go "too far" and then become a serious negative for the afflicted. But, even the milder forms are labelled "disease", and that I object to.

[rqstnnlitnmnt]

184. who exists as our model?

interesting thoughts sendero. i agree with you on every point -- we are all disordered somehow. it's society (especially american) that cultivates this xenophobia that is inherently human.

now, what's criminal about it are the constructs that we are fed regarding formalized "disorders" (i.e., autism, ADD, other anxiety disorders, etc.) humans love to form perfectly rigid models of things they don't know about (race, culture, origins of religion) and who do we leave the dissemination of these definitions to?

mainstream media (self-help books, tv news, articles in Time...), and corporate backed medical information professionals (doctors, corporate-financed information handouts, etc.)

and since most people don't have direct experience with individuals with autism, or other more overtly aberrant patterns of behavior (schizophrenia, dissociative disorders) we necessarily rely on these cultural constructs, and accept these campaigns as scientific fact.

from my experience with children with autism....i can't even begin to describe it. as with neurotypical children, patterns of behavior in kids with autism are tremendously varied. no kid is alike, especially since the nature of the disorder is a disconnect from rules of appropriate social conduct.

if there's one "disorder" that illustrates your point best, sendero, it's PDD/ASD.


EDIT: Disclaimer: After re-reading this, I realize that the phrase "appropriate social conduct" carries a superior and arrogant tone. What I am against, like many of you, is the tendency of therapy techniques like ABA towards molding blank-faced automotons who are punished for fulfilling their inner drives. What I teach to my kids are skills that will allow them to lead lives in which they are as independent as can reasonably be. I love the personalities of the kids I teach, and their creativity, and their Art of being. I just hope that I can somehow get through to them in a way that respects them foremost as a human being, but at the same time cultivates skills that they are incapable of learning by osmosis. Teaching a child to use the toilet independently involves so much detail, energy, and forethought -- but in the end, the individual's quality of life is invaluably enhanced. I respect all of my children as I respect any other human -- it would be absolutely immoral of me, with that being said, to ignore the teaching of functional skills that are necessary to live an existence that uses all of the individual's capabilities. We simply cannot leave these children to live as they were created because of the guilt we feel when we think we are extinguishing their uniqueness. Their personalities (the true parts untouched by methods of therapy) are so amazing to experience -- but what kind of life is it when one is perfectly free, but unable to engage in *any* self-help task independently. The inner drives of these individuals MUST be respected and honored (and in my experience, they are) but one must draw the line somewhere, especially when one encounters an individual with virtually no independent daily living skills.

[Freebird12004]

180. My Soul-mate

Decided to go on in life without me. His son was diagnosed with Asperger's and the man I love would share the same diagnosis. I'm not sorry that I had the time to love him only that a very special part of my life is missing, now that he's gone.

[shrike]

186. A word of caution

This is a very interesting thread. I have no family members with autism, though the brother of a friend is low-functioning autistic, now well into his old age and being taken care of by family, as he has been all his life.

This reminds me a little of the deaf activism movement, and, on a darker note, something which happened decades ago with the mentally ill.

There were those who believed that the mentally ill just saw life and reacted to life differently, should be accepted and allowed to be who they were, and, most importantly, integrated back into the community.

Many mental hospitals were hellholes; no denying that. However, well-meaning people -- as well as greedy and uncaring people like Reagan -- pressed for major changes in the way the mentally ill were cared for. Result: asylums were closed and their inmates "sent into the community." We all know the result of that; we see it every day on our street corners.

I'm not saying a tragedy like this will happen among the autistic community. But be vigilant, and most of all, be careful of what you wish for.

[Banazir]

187. I do agree that vigilance is necessary.

And most of all, an end to the all-or-nothing thinking that seems to characterize all of these different disability debates.

For instance, the idea of either institutions or the streets is clearly broken somehow, but it's the framework most people know from reading the newspapers. People need to think outside that framework.

Fortunately, there are actually things in place so that for instance despite being considered severely disabled I receive state services and live in an apartment. And there are a lot of people like me, including some with little to no recognizable communication. People need to be fighting for at the very least things like this -- community services that genuinely respect people as individuals rather than form-fitting us to some mold -- rather than setting up a dichotomy whereby I would either be locked up against my will or living on the streets but in either case wouldn't have a lot of choice in my life.

Physically disabled people are fighting for these things too. What autistic people want is much more akin to wanting a wheelchair rather than being forced to walk on braces and crutches (which was what used to happen to paraplegic people believe it or not), or support integrated into the surrounding community rather than from nursing homes, than to wanting to be abandoned onto the streets. It's also similar to the struggles of blind people awhile ago to be allowed to use white canes and Braille rather than having to pass for sighted but actually be far less functional in the process of passing. They had to fight parents over that one too. There's a longstanding tradition of non-disabled people fighting for the thing that appears the most normal-looking, and viewing things as a dichotomy between either shutting us away entirely or making us do everything their way, while disabled people know that our bodies work differently and that this needs to be respected, that constantly fighting to normalize us actually impedes our ability to deal with the world, and that disability is as much a political issue as anything else.

Unfortunately both the left and right wing in this country remain fairly ignorant of political disability rights perspectives, which is something disabled DUers as well as the mainstream disability community have noticed and complained about in the past.

[gorbal]

189. They went at it the wrong way.

That would have been fine if they had a system in place outside the institution to take care of the people they "let out". My brother, for example, has his own apartment and people to help him out 24/7. And I know others that live in group homes and other living situations.

Not all institutions are hell-holes however, some are actually quite well-run.

[shrike]

193. Yes, I know not all of them were hellholes.

And you're absolutely right -- they should have had a system in place.

I'm sure the idea behind it was a way to save money, not help the mentally ill lead better lives.