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Are you concerned about these developments in Pre-Natal Screening Tests for Autism?
Yes. 73%  73%  [ 37 ]
No. 20%  20%  [ 10 ]
Other, Please provide comment. 8%  8%  [ 4 ]
Total votes : 51

aghogday
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30 Aug 2012, 1:13 am

TheSunAlsoRises wrote:
Your replies are always detailed and informative. I appreciate them. Thank you.

Interesting. The focus has been on genetics, brain development, environmental causes outside socialization, and biology. I think in 'developed countries' investigation into a cultural shift, adaptation to human machine social interface, warrants studying especially IF ASDs are diagnosed far less in undeveloped countries.

IF you think about IT, a large extended industrial and manufacturing family, had enough people around to engage a child or adult in scheduled systematic work and play. In other words, what we today term as ABA therapy(hours of language, social, communication, and behavioral therapy) was occurring in a naturalistic setting as a function of culture.

Something to ponder further....

TheSunAlsoRises


I didn't speak until I was 4, and wonder if I would have made the effort If I had a TV before the age of 7, as TV soon after that became an integral, but limited part of my reality, as well as a medium that was still very limited in scope of what was portrayed, censored in a deliberate way to provide a positive diluted message of reality for the audience.

The first violent movie I ever saw was the movie Jaws at about the age of 16, I can remember the disorientation I felt coming out of that movie. And "I dream of Jeannie", was as about as much skin as one could view on TV, as a younger child.

I can remember the "Planet of the Apes", at about age 9, and my first personal questions about reality and existence. But, sex and gore, was not something I was exposed to until age 16.

I don't think I would have ever spent years in childhood with neighborhood kids outdoors or walking the beaches as a teen and young adulthood, completely fulfilled for just being alive and part of nature by myself or with several neighborhood friends, if there were an option of broadband high speed internet access, a 50 inch high definition TV with a thousand channels, with images changing like fireworks on average every second.

I'm glad I did not have the option of trading the beach with video-games and online pornography, as I seriously doubt I could have felt the same nuance of bliss I found in nature, along with the ability to appreciate the complexity of the natural stimulation provided by a sunny day, a breeze, mesmerizing sound of waves, and the feel of the ocean water as home.

I think that is what it means to be human, and I was able to continue this experience working with the public for almost two decades, in a place where people wanted to be, as that experience of the balance of nature could still be found in other human beings.

I found the ability to adapt to connect with hundreds of people a day, but rising further in an organization, becoming a slave to a computer screen all day every day for 5 years, took something from me, that I have not been able to regain. I remember going back to that beach, no longer being able to feel the nuance of nature, that I once felt.

What I wonder though, do children born today, ever have an opportunity to feel a similar bliss and tranquility just for being alive.

I have a 17 year old cat that spent most of his life outdoors, and has recently been invited indoors, that slept awhile inside, but soon even though frail, chose outdoors lying in the grass in a moonlit night over a comfortable couch and climate control. Another cat who never experienced the outdoors, only moves when it is time to eat, and is terrified of being outdoors.

The outside cat is still part of something that I lost along time ago, that my Aunt who recently passed away visibly experienced well into her 90's. One could see it in the twinkle of her eyes that no longer had good vision, as she sat outside on her porch.

I'm glad I had the opportunity to be an "outside cat" during my youth, as well as having no choice but to personally interact with thousands of people during my working career. But, I can't imagine doing that now, or enjoying it.

The human machine interface provides an extreme amount of stimulation in many different avenues, but, perhaps cannot replace the nuance of what has been understood as the human experience for over a million years, where every leaf and blade of grass generates both emotion and meaning. And, even delight in one quartz grain of sand that one finds between their toes after a day at the beach.

And finally, where is the point of reference, if all one has known is machine human interface during the course of their life. At age 3, before I could talk, living on the river, looking across the river, at the treeline, I felt like I had been here forever, completely at ease with my surroundings; I had no inner voice at that point to describe it, just a full sensory experience of existence, that I had already indirectly experienced through millions of years, as there was never a clear break of the chain of events from me and my ancestors and before that point that resulted in my existence.

I can't help but to wonder if that human machine social interface interrupts those chain of events, producing a novel type of human being, that has never existed before, with no clear understanding or perception of the context of where they are.

I am one hundred percent sure I was born on the right planet, but that planet is no longer effectively the same, as I no longer have the ability to perceive it in the same way.

For me the adaptation was a struggle but a rewarding one. But, I feel almost sure that if I was born today, I would have ended up without the ability to adapt at a very young age, not necessarily because of people, but at least in part, because of the human machine social interface, provided now, that did not exist then.

I can remember wishing for a machine that would answer all my questions in life; but looking back I'm glad I had no choice but to rely upon imagination with no clear answers for decades.

The ability to feel the nuance of magic in life, is taken away, in part, when one learns there is no Santa Claus, at least when I was growing up, and naivety protects one from the full extent of reality and anxiety, that is provided now as hyper-reality, something I did not fully experience, until I saw the movie Jaws.

The effect to those with a similar neurology that I was born with, I think, potentially results in "Autistic burnout" in one's teens or twenties instead of one's forties or later. At least, from some of the stories that I have read here. In that sense there are some likely on the spectrum that play a role as the canaries in the coal mine.

The good news is that when one is young, before they find themselves in the workplace and slave behind a screen, there is a simple option, turn it off, but it doesn't appear to be a realistic option, once one has been indoctrinated and adapted to a way of life centered around a human machine social interface.

The tools that human beings use become a cognitive extension of their being, a recent finding in science, but common sense. Part of why people take such good care of their cars, and are willing to spend so much time virtually connected to devices that can provide so much stimulation 24/7 365 days a year. They are incredible tools that have become a cognitive extension of the reality of human existence. I have to admit I have enjoyed them, but am glad I was introduced incrementally instead of served a full portion, shortly after birth. :) I suppose those that continue to adapt to what is will continue to adapt.



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30 Aug 2012, 2:39 am

aghogday wrote:
TheSunAlsoRises wrote:
Your replies are always detailed and informative. I appreciate them. Thank you.

Interesting. The focus has been on genetics, brain development, environmental causes outside socialization, and biology. I think in 'developed countries' investigation into a cultural shift, adaptation to human machine social interface, warrants studying especially IF ASDs are diagnosed far less in undeveloped countries.

IF you think about IT, a large extended industrial and manufacturing family, had enough people around to engage a child or adult in scheduled systematic work and play. In other words, what we today term as ABA therapy(hours of language, social, communication, and behavioral therapy) was occurring in a naturalistic setting as a function of culture.

Something to ponder further....

TheSunAlsoRises


I didn't speak until I was 4, and wonder if I would have made the effort If I had a TV before the age of 7, as TV soon after that became an integral, but limited part of my reality, as well as a medium that was still very limited in scope of what was portrayed, censored in a deliberate way to provide a positive diluted message of reality for the audience.

The first violent movie I ever saw was the movie Jaws at about the age of 16, I can remember the disorientation I felt coming out of that movie. And "I dream of Jeannie", was as about as much skin as one could view on TV, as a younger child.

I can remember the "Planet of the Apes", at about age 9, and my first personal questions about reality and existence. But, sex and gore, was not something I was exposed to until age 16.

I don't think I would have ever spent years in childhood with neighborhood kids outdoors or walking the beaches as a teen and young adulthood, completely fulfilled for just being alive and part of nature by myself or with several neighborhood friends, if there were an option of broadband high speed internet access, a 50 inch high definition TV with a thousand channels, with images changing like fireworks on average every second.

I'm glad I did not have the option of trading the beach with video-games and online pornography, as I seriously doubt I could have felt the same nuance of bliss I found in nature, along with the ability to appreciate the complexity of the natural stimulation provided by a sunny day, a breeze, mesmerizing sound of waves, and the feel of the ocean water as home.

I think that is what it means to be human, and I was able to continue this experience working with the public for almost two decades, in a place where people wanted to be, as that experience of the balance of nature could still be found in other human beings.

I found the ability to adapt to connect with hundreds of people a day, but rising further in an organization, becoming a slave to a computer screen all day every day for 5 years, took something from me, that I have not been able to regain. I remember going back to that beach, no longer being able to feel the nuance of nature, that I once felt.

What I wonder though, do children born today, ever have an opportunity to feel a similar bliss and tranquility just for being alive.

I have a 17 year old cat that spent most of his life outdoors, and has recently been invited indoors, that slept awhile inside, but soon even though frail, chose outdoors lying in the grass in a moonlit night over a comfortable couch and climate control. Another cat who never experienced the outdoors, only moves when it is time to eat, and is terrified of being outdoors.

The outside cat is still part of something that I lost along time ago, that my Aunt who recently passed away visibly experienced well into her 90's. One could see it in the twinkle of her eyes that no longer had good vision, as she sat outside on her porch.

I'm glad I had the opportunity to be an "outside cat" during my youth, as well as having no choice but to personally interact with thousands of people during my working career. But, I can't imagine doing that now, or enjoying it.

The human machine interface provides an extreme amount of stimulation in many different avenues, but, perhaps cannot replace the nuance of what has been understood as the human experience for over a million years, where every leaf and blade of grass generates both emotion and meaning. And, even delight in one quartz grain of sand that one finds between their toes after a day at the beach.

And finally, where is the point of reference, if all one has known is machine human interface during the course of their life. At age 3, before I could talk, living on the river, looking across the river, at the treeline, I felt like I had been here forever, completely at ease with my surroundings; I had no inner voice at that point to describe it, just a full sensory experience of existence, that I had already indirectly experienced through millions of years, as there was never a clear break of the chain of events from me and my ancestors and before that point that resulted in my existence.

I can't help but to wonder if that human machine social interface interrupts those chain of events, producing a novel type of human being, that has never existed before, with no clear understanding or perception of the context of where they are.

I am one hundred percent sure I was born on the right planet, but that planet is no longer effectively the same, as I no longer have the ability to perceive it in the same way.

For me the adaptation was a struggle but a rewarding one. But, I feel almost sure that if I was born today, I would have ended up without the ability to adapt at a very young age, not necessarily because of people, but at least in part, because of the human machine social interface, provided now, that did not exist then.

I can remember wishing for a machine that would answer all my questions in life; but looking back I'm glad I had no choice but to rely upon imagination with no clear answers for decades.

The ability to feel the nuance of magic in life, is taken away, in part, when one learns there is no Santa Claus, at least when I was growing up, and naivety protects one from the full extent of reality and anxiety, that is provided now as hyper-reality, something I did not fully experience, until I saw the movie Jaws.

The effect to those with a similar neurology that I was born with, I think, potentially results in "Autistic burnout" in one's teens or twenties instead of one's forties or later. At least, from some of the stories that I have read here. In that sense there are some likely on the spectrum that play a role as the canaries in the coal mine.

The good news is that when one is young, before they find themselves in the workplace and slave behind a screen, there is a simple option, turn it off, but it doesn't appear to be a realistic option, once one has been indoctrinated and adapted to a way of life centered around a human machine social interface.

The tools that human beings use become a cognitive extension of their being, a recent finding in science, but common sense. Part of why people take such good care of their cars, and are willing to spend so much time virtually connected to devices that can provide so much stimulation 24/7 365 days a year. They are incredible tools that have become a cognitive extension of the reality of human existence. I have to admit I have enjoyed them, but am glad I was introduced incrementally instead of served a full portion, shortly after birth. :) I suppose those that continue to adapt to what is will continue to adapt.


I see it, too, even in some of the older self-advocates. The most prominent ones in their fifties and sixties jet around the world giving lectures while running profitable businesses BUT a number of the young are sedentary and isolated. It is as IF, the young and the old have switched the spirit of being change agents. While I am fully aware THAT Autistics are individuals with unique abilities and challenges; i can't help BUT wonder IF a pre- technological culture may have given those on the so-called higher end of the spectrum an edge in social adaptation.

But, as you noted,.....those that continue to adapt to what is will continue to adapt.

TheSunAlsoRises



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30 Aug 2012, 6:32 am

TheSunAlsoRises wrote:

I see it, too, even in some of the older self-advocates. The most prominent ones in their fifties and sixties jet around the world giving lectures while running profitable businesses BUT a number of the young are sedentary and isolated. It is as IF, the young and the old have switched the spirit of being change agents. While I am fully aware THAT Autistics are individuals with unique abilities and challenges; i can't help BUT wonder IF a pre- technological culture may have given those on the so-called higher end of the spectrum an edge in social adaptation.

But, as you noted,.....those that continue to adapt to what is will continue to adapt.

TheSunAlsoRises


My father was in law enforcement for 43 years, and never showed expression of emotion or said more than a few words on the telephone to either myself or my sister, both of us diagnosed on the spectrum in midlife. I was amazed to see a video of him talk, on TV at the time of his retirement, as he expressed himself with animation, fluently and extremely intelligently, as a person that I had never encountered for over 40 years. His work was his special interest, and not something he shared with us in the home environment.

I always thought he looked like he should be a famous politician, but he had no ambition of rising any higher than a deputy sheriff, and remained there. He understood his limits, and is still going strong at 80 years of age.

I had a vague understanding that I had limits well before my diagnosis, but had no choice to stay employed within those limits, but to rise to a level of management as an Athletic Director at a military installation, which was no part of my nature as a human being. But, I made my work my special interest, even though I had no general interest in the field I was in, my entire career, working with people that were semi-professional sports stars at some point in their life, whereas I was the one picked last in every playground sport in grade school.

My degrees in college were special interests of choice in Anthropology, Social Sciences, and Health, but of no value to me in the job market.

But what I did not realize was that my wife who lived with me outside of my work environment was more fully aware than I was ever willing to admit, that I was more like my father than I ever realized as I could only animate myself and communicate with others, in the work environment that I had adapted to. It was ironic as I never talked much or expressed emotion to my father either, but assumed since he did not communicate in the home environment that he was not capable of communicating well in the work environment. I always figured I deserved not to communicate at home and my family would understand that, because I was tired from doing it at work or school, but never considered that could be just as valid an excuse for my father.

My father was never overtly mean to us, he just could not do the small talk.

He also understood part of his limit was not raising children, so he was only in the family picture for three years. That might have been the best thing overall, as my mother was not as tolerant as my wife over a lack of communication in the home, as I met her at work, and she could observe me in action as able to communicate well enough to get by.

There seems to be a significant amount of animosity against described "NT" parents, but I wonder how many cases are similar to mine where one cannot see the similarities from a viewpoint that, at least for me, I can identify as more limited than what I was cognitively aware of for decades. While my mother always expressed unconditional love for me no matter how difficult I was to be around as a youth, which I was not aware of at the time, it took my diagnosis, and understanding of the condition, in midlife, for her to finally forgive my father for not communicating during their marriage, leaving, and not being able to explain why.

I never knew my father personally and he never knew me personally, but I finally have the advantage of understanding him, from a better understanding of myself, and a better appreciation for what it took for those that loved me, to love me, but I still have the same problems communicating at home, and am fortunate I have a family that has been able to adapt to that, as I am trapped inside of a person who cognitively understands what they should do, but cannot find the motivation or what might be described as the emotive power to do what I understand I should do, as I strive to do the right thing, without that thing that I vaguely understand behind the word strive, that I could count on for so many years at school and at work.

I completely owe my survival to my family; it took me many years to understand the full extent of the support that I received, having a child of my own with a disability, provided insight that otherwise I would have never received, as well as falling to physical disability, as much of my strength in life, in the real world outside of school and college, was physical in nature, and not something that came naturally as both myself and my sister did not thrive physically as young children, something we both had to overcome with adaptations to gain physical strength.

I was too naive to understand any limitation when I was young; and had no one to inform me of potential limits in my life. Another reason I'm glad there was no Google at that time, as the slang words used against me went right over my head, and never hurt as much as they would have hurt, if I had understood what they meant. I just figured people were making words up, as they were not part of the dictionary I had at home. :)

I'm so glad I was born when I was born; and just to think that the majority of my ancestors never enjoyed a hot shower, a soft bed, climate control, and toilet paper. I owe them everything. I can remember thinking that as a child, things could be much worse, this shower could be cold.

Life is more complicated, but as creatures in the Universe, there is a slice of heaven available through the luxury of modern culture, that potentially only our domesticated animals, in part, have shared, across many galaxies, in a small point of time. If there is a such a thing as general existence privilege in the Universe, I think some us of share more of that than we can possibly comprehend, or potentially less of it, as it is always a matter of perspective. :)

I could never put these thoughts into verbal communication, but have thought some of them for as long as I can remember; looking into those eyes of wisdom of my father that never spoke many words, I wondered if he had similar thoughts, but had no idea how to ask him, or to share my thoughts.

His father, who died before I was born, had those thoughts and could put those words in writing as he was a writer; his thoughts still exist in books that resonate with me. I could only do that in the last two years, as a result of vision problems that forced me into communicating in writing. I could think and read and answer multiple choice tests, but I had almost as much difficulty in writing as I did with oral presentation, neither of which was a significant requirement when I was in school.

Adversity and the human spirit, seem one and the same to me. As well as potentially providing one an experience of many lifetimes in one, which I would think is a common experience for many that survive into middle age, regardless of labeled diagnoses, but not something normally discussed in a public forum, as I have gone a Universe further than the topic I started, that I should probably move back on topic, to say, that I am not too concerned about Eugenics fears associated with prenatal tests and the Autism Spectrum, as there are probably so many people walking the streets that have no idea they might possibly be on a spectrum of any other than the human one; the much larger spectrum that I still personally identify with that was the only human spectrum I understood for several decades.

There will always be prospective parents somewhere on the broader autism phenotype, with no realized fears of their own potential disability, or any fear of potential disability for a family they may choose to start in the future.

The concern for me lies with those who live, and who will be born in the future, regardless of science that one cannot realistically censor, or the individual choices that people legally choose. But, from what I can objectively see, I would agree with Dr. Whitehouse from the topic linked article, that we probably never will see an ironclad prenatal test for Autism Spectrum Disorders, like what is seen with disorders specific to one genetic origin like Downs syndrome. I hate to see fear where fear is not warranted, and don't see a significant potential tool of Eugenics in any of this research, currently ongoing, and will be surprised if the five year research that Whitehouse is directing results in a test that provide any significant risk for autism spectrum disorders, based on measurement of maternal hormones and ultrasounds of fetal brain development, however I would expect to see correlations, among some subgroups of autism spectrum disorders.



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01 Sep 2012, 10:19 pm

Speaking as someone who is childless by choice (partly because I haven't found Mr. Right, or even Mr. Sperm Donor, uneven self employed earnings, doubts about my fitness as a parent being on the severe side of the spectrum, and fear quite frankly about having a child even more severely on the spectrum than myself) I think the idea of a test is a good one. IF it leads to abortion, it's their choice, but it can also lead to being better prepared about raising an autistic child. I think the technology is there for certain types of Autism (Fragile X and Retts as mentioned previously) But I don't think the genetic science is there to be a silver bullet yet. It would give parents a false sense of security, for one thing. I really understand the point that disability activists make, but I think choice comes first.



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03 Sep 2012, 9:59 pm

I feel that all babies should be brought into this world, whether they have a disability or not, no matter what disability they have.


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04 Sep 2012, 6:16 pm

For the first time in my life, I'm absolutely speechless. This is just horrific. I cried continuously for over ten minutes after reading this demonic filth.


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04 Sep 2012, 6:26 pm

Curiotical wrote:
For the first time in my life, I'm absolutely speechless. This is just horrific. I cried continuously for over ten minutes after reading this demonic filth.
what actualy are you refering to when you say that


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05 Sep 2012, 12:41 am

I would be horrified by the idea if I were younger, but now, after years of exposure to life, I can't say I even care. Condemning such a practice as immoral doesn't make sense to me when the overall happiness of the thinking, feeling creatures on the Earth will be increased, and when so many other "bad" things are tolerated and ignored by everyone, including myself. Morals just seem so arbitrary and pointless to me now, and yet I go out of my way to save insects drowning in a swimming pool. It's like I have two conflicting sides within me. One is extremely cynical, the other is extremely idealist.



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15 Sep 2012, 12:31 pm

It depends, I wouldent mind (and would prefer) a son with aspergers syndrome or HFA and I think if people get educated many will find the idea not that bad. Plus if peole can get their fetuses pre screened for anything than that is their right. We have no right to decide if other people offspring should be autistic.



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15 Sep 2012, 12:38 pm

Not really, I don't really think they are going to be able to isolate a single cause of autism to be altered...or a single thing that indicates without a doubt an individual has autism.


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15 Sep 2012, 12:40 pm

UnLoser wrote:
I would be horrified by the idea if I were younger, but now, after years of exposure to life, I can't say I even care. Condemning such a practice as immoral doesn't make sense to me when the overall happiness of the thinking, feeling creatures on the Earth will be increased, and when so many other "bad" things are tolerated and ignored by everyone, including myself. Morals just seem so arbitrary and pointless to me now, and yet I go out of my way to save insects drowning in a swimming pool. It's like I have two conflicting sides within me. One is extremely cynical, the other is extremely idealist.


So people with autism are 'bad things' that others have to suffer through tolerating......and thus people with autism should be prevented from being born at all costs. :roll:


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15 Sep 2012, 2:35 pm

Every life is precious from conception until natural death.


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16 Sep 2012, 11:31 am

If they can prescreen for autism, why is it so fricking hard to get a diagnosis as an adult? Our genetic makeup hasn't changed.



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16 Sep 2012, 12:05 pm

weeOne wrote:
If they can prescreen for autism, why is it so fricking hard to get a diagnosis as an adult? Our genetic makeup hasn't changed.


They cannot pre-screen for it yet, they haven't even isolated it to one variation that causes it....from what I've gathered recent information seems to indicate its likely its a combination of factors that cause autism not just one specific thing that can be altered or detected before birth. I am sure they can pre-screen for abnormalities but nothing that would for sure indicate the child is going to have Autism.

Then of course even if one does have autism, it is also true that the environment can play a role in their level of functioning and development so it would be impossible to tell if they'd have low functioning, high functioning or somewhere in the middle autism.


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16 Sep 2012, 6:53 pm

Sweetleaf wrote:
weeOne wrote:
If they can prescreen for autism, why is it so fricking hard to get a diagnosis as an adult? Our genetic makeup hasn't changed.


They cannot pre-screen for it yet, they haven't even isolated it to one variation that causes it....from what I've gathered recent information seems to indicate its likely its a combination of factors that cause autism not just one specific thing that can be altered or detected before birth. I am sure they can pre-screen for abnormalities but nothing that would for sure indicate the child is going to have Autism.

Then of course even if one does have autism, it is also true that the environment can play a role in their level of functioning and development so it would be impossible to tell if they'd have low functioning, high functioning or somewhere in the middle autism.


There is a prenatal test that provides low risk for autism to screen for it, but it does not provide definitive results.



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17 Sep 2012, 10:31 am

Here's the thing:

Scientists will keep researching until they locate genes for as many non-desirable/non-NT traits as they can. This research will be used according to whoever has the power/money to use it. Right now in the ASD world, groups like Autism Speaks have the most money. As we know, there are those in that the group who would like to rid the world of autism the way we rid the world of smallpox.

The only remedies may be through bio-ethics and voting. So, one of my wishes is for everyone to register to vote and then vote. Another wish is for professionals in the field of treatment to recognize how much we really don't know, so be careful with every aspect of working with ASDs, from therapy to meds--especially meds. Yet another wish of mine is that the NT world in the US get over itself and recognize that ASDs are an integral, important part of, no, key to its prosperity.

Bumper sticker: NTs: Get Over Yourself