Autism Speaks #MSSNG campaign. Google involved - Thoughts?

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Hansgrohe
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14 Dec 2014, 2:40 pm

I don't think we were ever anti-science. We're against science being used for unethical reasons; in this case, this is wiping out an entire segment of the population which in itself has a lot of varying individuals.



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14 Dec 2014, 5:17 pm

Our problem isn't that we hate science it's that A$ spent $50 million on this science project instead of helping establish communities and support groups for poor families who's children have Autism. Our mental heath system is a mess in the US and this certainly doesn't help.


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14 Dec 2014, 10:14 pm

alex wrote:
It's a little disheartening to see such an anti-science sentiment in this thread. While the branding and focus of this campaign leaves a lot to be desired, I don't like seeing the "oh no lets not do genetic research. Think of all the bad things that could happen " sentiment.

Think of technologies that help us like
Nuclear medicine
Lasers
Microwaves


The same could have been argued about research related to all of those.


I've not seen any anti-science surrounding this, you may be misinterpreting this one. People that are saying "no they shouldn't" aren't against research, but are against people that are pushing an agenda, mainly the elimination of the spectrum, which has serious ethical and moral implications. Another very good reason is that research is NOT what is needed to help AS people right now.

Also, I would be very careful about what you consider to be derived from the scientific method, as there are many that seek to poison the well of knowledge for their own purposes.



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14 Dec 2014, 10:42 pm

Jono wrote:
I am a scientist so I'm not against science obviously or for that matter even learning about the genes that could lead to autism. The problem I have is that knowing the genetic markers are not going help or support people already living with autism. The only thing that they could try do with that is possibly develop a prenatal genetic test for autism. Though I think that would be hard because we already know that the genetics of autism are far more complex than what they previously thought it could be, it's not just a single gene or chromosome.


This.

That's the only place that the research can go. That, or possibly a gene therapy program. Both are an abomination, as is an open source database available to everyone.

(It won't let me edit my previous post for some reason.)



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15 Dec 2014, 11:46 am

The genetic issue per the entire spectrum is an important one as science already SHOWS that the gene that causes 5% of all cases of Autism Spectrum Disorders per report of research is the gene that causes Fragile X Syndrome.

In a recent study discussed in this forum, it was noted that there are no substantial structural differences reported among a study of so-called higher functioning Autism.

Obviously this would NOT BE THE case if so called-lower functioning folks on the spectrum were studied, per case in point Fragile X Syndrome and of course even Temple Grandin that one might put somewhere in the moderate affected population of the spectrum, considering her overall functionality in life.

Temple Grandin had a developmental issue that caused an anomaly in the right hemisphere of her brain that has been attributed to both her weaknesses and strengths in intelligence through the power of human adaptation with both epigenetics and neuroplasticity.

The diagnosis of Autism is currently based on behavioral deficits of reciprocal social communication as that applies to making and retaining peer appropriate relationships, sharing interests and achievements reciprocally, understanding and expressing non-verbal language, and Repetitive Restrictive Behaviors, including behavior that manifests as sensory integration problems.

Science now shows that physical intelligence per way of the cerebellum helps to balance emotional regulation and sensory integration, and additionally physical intelligence is part of both speech and non-verbal language, along with so-called standard measures of intelligence.

I was born with perhaps the most common type of BRIGHT EYED QUIET CHILD WHO UNDERSTANDS THE WORLD BUT JUST CANNOT SAY IT form of Autism and that is the Hyperlexic variety of understanding the symbols of written language precociously and often excelling in rote memory, including seeing more patterns in life than the average human being.

The speech delay I experienced before until age 4 is also a common part of the Hyperlexic flavor of Autism.

In my case, though, I was certainly not one to treat others like mechanical aids as can be seen in some so-called lower functioning parts of the spectrum as I tugged the skirt of my mother before I could speak and led her to the lost keys, she was muttering about, under the bed, down the hall in another room.

I was also born hyperactive by report of the doctor as there was no official diagnosis of ADHD at that time, nor was there an official diagnosis of MY KIND OF AUTISM as the doctor said the bright eyed smiling, connecting, obviously affective emotional empath-like child putting his arms out to everyone to love him, will talk when he gets good and ready.

And yes, I did, AFTER THE AGE OF 4, but with great difficulty of getting my points across verbally and in writing concisely as I had a multitude of thoughts about the world I experienced and wanted to get them all out at one time, with my supercharged brain, which later went on to 11 out of a class of 381 in high school, 3 college degrees, and a career of almost a quarter of the century with the government rising up to the GS9 to GS11 pay grade level, and financial independence by the age of late 40's.

I also was a stutterer and was so interested in other people that I tried not to talk too much as when I did people generally could not maintain focus with ALL I HAD TO SAY THAT often came out garbled as my mind worked much faster than my mouth.

And yes, I also had problems with non-verbal communication that I know for sure now is a direct result of sitting still as the best and most attentive 'apple bringing' favorite, extreme focus student of almost every teacher's room, as reported by them, and not me.

And then, when I go home, thank goodness there are only 3 black and white channels on TV and no computers or video games as I played outside and did learn some physical intelligence as well as being exposed to the neighborhood kids, some of who had similar characteristics of what back then was called NERD, otherwise now understood as part of the 10 to 15 percent of the general population with traits of this NOW behaviorally described so-called neurological disorder of Autism Spectrum Disorder.

If NOT, my functional disabilities per reciprocal social communication would most definitely have been much more challenging, then, with a doubt.

My weaknesses in intelligence were in the written and oral presentation area of education but at that time, as long as a person could ace every multiple choice and short answer written test the top of the class could be a reality, and teachers then overlooked the other social awkwardness stuff as simply what 'NERDS' DO as part of that perceived part of the school demographic.

But it was a serious challenge for ME, throughout my life, until finally just recently I determined that the part of my Autism that was seriously challenging was more of a deficit of other THAN STANDARD IQ MEASURES OF INTELLIGENCE By WAY OF PHYSICAL INTELLIGENCE AND THE CEREBELLUM DIRECTING emotional regulation, non-verbal language, as well as sensory integration.

Perhaps it seems like too easy of a fix to be true, but I started my own style of martial arts and ballet like dance walking that I have done now to the tune of almost 2800 miles, now approaching a 16 month marker, and I am considered strange, still, per my monologues of special interest, and obvious STILL have considerable RRB'S PER THE 2800 MILES OF DANCE WALKING, CASE IN POINT.

BUT my non-verbal language is considered fully as normal and almost like an 'Italian' if you will, for stereotype.

And I make friends now ALMOST everywhere I go, WITH both young and old, so yeah, the peer appropriate part of that is still an issue, as I consider everyone equal in this ironically so-called strange way of seeing and interacting with ALL other folks.

But if it was not for physical disability of 19 documented medical disorders that I have talked about at length on this website, I probably would have never gained the courage to dance walk in the face of the public to remediate both the physical disabilities as well as the reciprocal social communication difficulties, so it will probably be difficult to repeat the experiment that worked for my life, at least.

The thing here, is while the guy in my current 'batman for fun' avatar may look more like a Super Hero now in REAL LIFE THAN the so-called nerd stereotype of the higher functioning Autism flavor, I WAS THE NERDIEST LOOKING KID in middle school per posture, hair style in cluelessness on what was cool, and yes, string bean appearance of a body that did not 'know' full physical intelligence like the guys on the football team who exercised all parts of their body through 360 degrees of motion.

SO CHANGE IS POSSIBLE BOTH IN PHYSICAL APPEARANCE and movement AND RECIPROCAL SOCIAL COMMUNICATION DIFFICULTIES THROUGH Epigenetics and Neuroplasticity both in a negative way that made my life challenging and IN A POSITIVE WAY, at LEAST IN MY CASE, AS I have documented in irrefutable evidence along my way of recovery to prove that AT LEAST IN MY CASE study, the most functionally disabling parts of Autism were FULLY ENVIRONMENTAL, JUST 'LOOKING' FOR NATURAL CHANGE.

SO NO, I am not diseased and no longer even disordered, as I move in space and distance and even non-verbal communication in synch well enough with my PEER FULL CROWD, wherever I go.

And am I missing something; hell no, at least not innately as I have SKILLS now that I PRACTICE IN REAL LIFE THAT NO AND I DO MEAN NO, any so-called NEUROTYPICAL HAS AS A of PART in LIFE THAT I come into contact with and what that is, is, simple balance and satisfaction with life as is, like the 'Forest Gump feather' just floating on Terrestrial plane of earth.

Professionals are finally using movement therapy for some cases of Autism and I for one KNOW THEY ARE ON the right track of increasing the TRUE INTELLIGENCE OF PHYSICAL Intelligence that science now does show directs the balance of emotional regulation and sensory integration by way of Cerebellum part of brain.

I use to move like a robot, stiff and plastic, and now people report that I look like a Tiger confidently moving across the Savannah.

And yes, that feels good as nonverbal language is truly still what people judge folks on, in general, per if they are a 'safe bet' or 'strange bet' in life for reciprocal social interaction, and that's the way human nature works and will always work as COMMON EXPERIENCED INSTINCT as long as humans ARE classically evolved like this.

Yes, physical intelligence IS the so-called CURE and or remediation OF ENVIRONMENTAL CAUSAL FACTORS AND NOT INNATE DISEASE OR DISORDER FOR ME, AT LEAST, AND YES AGAIN, I have the documented evidence that proves it irrefutably so.

But finally, this is just one person and one type of Autism.

There are others that do not have AN ENVIRONMENTAL SOLUTION LIKE THIS, AND THAT IS the current purview of medical science and certainly not limited to one nonprofit organization that is a tiny part of the Autism Research Pie, per the most recent report that put Autism Speaks total annual effort in 2010, at about 4% of funded dollars for Autism Research in the US.

The Simon's foundation does about three times more Autism Research per that report, as well.

If Autism Speaks goes away tomorrow, none of this Autism Research or overall direction is going to change, in significant numbers, not even at 5 percent, as there are already identified genetic causes of Autism, per Fragile X syndrome, and others, and it would simply NOT be ETHICAL to AVOID pursuing potential answers to remediate the suffering THAT DOES OCCUR LIKE THE ASSOCIATION of 22Q11.2 gene deletion syndrome that killed my child per auto-immune related challenge.

I would dare someone to come into my life and tell me face-to-face that genetic related problems associated with Autism does not deserve funding to potentially CURE AND REMEDIATE THIS TYPE OF HUMAN SUFFERING, PER potential death.

Nah, that might happen to my old so-called 'nerd' self, but a 227LB martial artist, doesn't get flack like that in real life, as that is the way nature works too.

TRUE human confidence in social interaction comes from proficiency in Physical intelligence from posture to openness and fearlessness of presence in nonverbal communication to the way one stands to the way one walks.

It attracts rather than repels, others, and I again, have the documented evidence that proves that too, without a doubt as I've been and done both places.

I cannot guarantee that increasing the balance of physical intelligence would help anyone here, but I highly suspect it would, and it certainly could not hurt in any way, I know of, at least, FULLY now. :)

And yes, I do think it would be GREAT IF AUTISM SPEAKS SPECIFICALLY could fund more research like this, but the truth I see is no, that do not care, as the focus is on the most serious of challenges that folks do incur on the so-called lower end of functioning of the Spectrum.

It's a free world IN the U.S. and that is totally up to them, and there is absolutely nothing anyone can do to change it other than a new dictatorship in the US, if they and the rest of private non-government funded research decides to go the route of genetic research instead of effective and AFFECTIVE POTENTIAL ENVIRONMENTAL CHANGE for remediation of challenges.

In my opinion, that is one of those things IN LIFE that one cannot change and must accept IF ONE WANTS peace OF MIND to go on with improving their own quality of life with WHATEVER WORKS.

AND IF one is like me and never ever gives up, no matter what, one just might be incredibly successful if one can stand all the failings that do come in life and MOVE ON.

I for one, again, have irrefutable evidence for that. :)

And if nothing else, perhaps that alone, will give someone out there that believes they can change for their own perception of better a little more hope that IT IS POSSIBLE IN LIFE. :)


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15 Dec 2014, 11:59 am

[quote="aghogday"]The genetic issue per the entire spectrum is an important one as science already SHOWS that the gene that causes 5% of all cases of Autism Spectrum Disorders per report of research is the gene that causes Fragile X Syndrome.[quote="aghogday"]



yes this is true and known fact for 3 decades,if young people on this forum read some of the old books on autism they would know these things.i used to spend 3 hours reading books on autism at the Umass library.young people today so dependent on online sources never bothered to read the old books.


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15 Dec 2014, 12:07 pm

vermontsavant wrote:
aghogday wrote:
The genetic issue per the entire spectrum is an important one as science already SHOWS that the gene that causes 5% of all cases of Autism Spectrum Disorders per report of research is the gene that causes Fragile X Syndrome.




yes this is true and known fact for 3 decades,if young people on this forum read some of the old books on autism they would know these things.i used to spend 3 hours reading books on autism at the Umass library.young people today so dependent on online sources never bothered to read the old books.


Thanks Vermontsavant, and good to see a picture of you there, I am guessing, with your significant other in the avatar, as I as an innate visual and symbolic thinker more than an innate word thinker, like to see the person I am talking to, to know MORE OF them as I get so much more out of input of nonverbal communication than voice alone.

And yes, that type of autism is much different than the herd here, overall, obviously, but again, one meets one autistic person and one meets just one. :)

And I have to say, you do look like a friendly one in REAL LIFE, AND I FOR ONE AM NOT surprised at all PER THAT in how you treat people here in words, in always a respectful manner, PER THAT HISTORICAL RECORD HERE AS IS. :)


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15 Dec 2014, 2:23 pm

So I'm not anti-science or technology. My concern is with what the technology is being used for. In this case, searching for genetic identifiers. The only goal of this is to interfere with the gene to modify or destroy it. Genetic modification, if available, would probably be used on everyone, neurotypicals included. I can just see people designing their child's face. It actually doesn't sound that bad. A world of winners. But what I think is more likely is that the genes will be identified and the child aborted. This would be short-sighted because, I believe, autistic people have something unique to offer society. But I fear this will be overlooked and undiscovered. I would hate for the autistic perspective to be lost, but I fear with Autism Speaks and Google actively looking for genetic identifiers, that they will find them before enough is known about autism to see that it has value.



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15 Dec 2014, 3:51 pm

aghogday wrote:
vermontsavant wrote:
aghogday wrote:
The genetic issue per the entire spectrum is an important one as science already SHOWS that the gene that causes 5% of all cases of Autism Spectrum Disorders per report of research is the gene that causes Fragile X Syndrome.




yes this is true and known fact for 3 decades,if young people on this forum read some of the old books on autism they would know these things.i used to spend 3 hours reading books on autism at the Umass library.young people today so dependent on online sources never bothered to read the old books.


Thanks Vermontsavant, and good to see a picture of you there, I am guessing, with your significant other in the avatar, as I as an innate visual and symbolic thinker more than an innate word thinker, like to see the person I am talking to, to know MORE OF them as I get so much more out of input of nonverbal communication than voice alone.

And yes, that type of autism is much different than the herd here, overall, obviously, but again, one meets one autistic person and one meets just one. :)

And I have to say, you do look like a friendly one in REAL LIFE, AND I FOR ONE AM NOT surprised at all PER THAT in how you treat people here in words, in always a respectful manner, PER THAT HISTORICAL RECORD HERE AS IS. :)
I had not seen your picture either.you used your son and I used my dad for so long.i decided it was time for a picture of me and the Mrs.

I try to be cordial unless one really pushes my buttons,thanks aghogday


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aghogday
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15 Dec 2014, 4:05 pm

vermontsavant wrote:
aghogday wrote:
vermontsavant wrote:
aghogday wrote:
The genetic issue per the entire spectrum is an important one as science already SHOWS that the gene that causes 5% of all cases of Autism Spectrum Disorders per report of research is the gene that causes Fragile X Syndrome.




yes this is true and known fact for 3 decades,if young people on this forum read some of the old books on autism they would know these things.i used to spend 3 hours reading books on autism at the Umass library.young people today so dependent on online sources never bothered to read the old books.


Thanks Vermontsavant, and good to see a picture of you there, I am guessing, with your significant other in the avatar, as I as an innate visual and symbolic thinker more than an innate word thinker, like to see the person I am talking to, to know MORE OF them as I get so much more out of input of nonverbal communication than voice alone.

And yes, that type of autism is much different than the herd here, overall, obviously, but again, one meets one autistic person and one meets just one. :)

And I have to say, you do look like a friendly one in REAL LIFE, AND I FOR ONE AM NOT surprised at all PER THAT in how you treat people here in words, in always a respectful manner, PER THAT HISTORICAL RECORD HERE AS IS. :)
I had not seen your picture either.you used your son and I used my dad for so long.i decided it was time for a picture of me and the Mrs.

I try to be cordial unless one really pushes my buttons,thanks aghogday


You are welcome, and just an oh by the way, the picture of the child avatar was of me, not my child that passed away. :)

And I do still smile a lot, still, like the old child avatar.

I just like to play with photography like an actor sometimes, as such, just for fun, and truly in the last year iPhone selfies have been an excellent tool, to increase the nuances of my expressed non-verbal communication. :)

One of the professionals that was helping me regain my emotions, told me they actually use selfies as a therapy now to help Autistic children who have difficulty understanding and or expressing facial expressions in non-verbal communication as well as learning more about the facial expressions in non-verbal communication of others.

So, technology continues to march on, for successful adaptation to the reciprocal social communication environment. :)


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15 Dec 2014, 5:34 pm

A Mssng Link topic
I took a look at the website for Mssng and all I could see was something about genetic research. Human beings are fascinated by genetics; I know I am! I am getting my genome done to find the MISSING lines in my ancestry, due to brick walls. I have not found any AS relatives yet, and this could mean Autism is a lot more rare than we think. At least, there are both genetic and environmental aspects. The combination is a complex weave, and if the research is trying to tease out which is what and by how much, this is what will be of benefit, perhaps.
As for the eugenics spectre, finding what might be "missing" and then selecting for it via some sort of blood test is extremely complicated, and might not be all that accurate. Autism is not lethal. Some of the so called negative behaviours associated with Autism are due to intellectual challenges, and what the child feels when adults react to these behaviours, not to Autism itself. The idea of designer children is a closet full of nasties when opened. Be careful for what is wished.
That being said, there is nothing inherently evil about genetic research. But it is no miracle; any science must be tempered with common sense/wisdom and knowing the best way for it to further knowledge.


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15 Dec 2014, 5:45 pm

aghogday wrote:
vermontsavant wrote:
aghogday wrote:
vermontsavant wrote:
aghogday wrote:
The genetic issue per the entire spectrum is an important one as science already SHOWS that the gene that causes 5% of all cases of Autism Spectrum Disorders per report of research is the gene that causes Fragile X Syndrome.




yes this is true and known fact for 3 decades,if young people on this forum read some of the old books on autism they would know these things.i used to spend 3 hours reading books on autism at the Umass library.young people today so dependent on online sources never bothered to read the old books.


Thanks Vermontsavant, and good to see a picture of you there, I am guessing, with your significant other in the avatar, as I as an innate visual and symbolic thinker more than an innate word thinker, like to see the person I am talking to, to know MORE OF them as I get so much more out of input of nonverbal communication than voice alone.

And yes, that type of autism is much different than the herd here, overall, obviously, but again, one meets one autistic person and one meets just one. :)

And I have to say, you do look like a friendly one in REAL LIFE, AND I FOR ONE AM NOT surprised at all PER THAT in how you treat people here in words, in always a respectful manner, PER THAT HISTORICAL RECORD HERE AS IS. :)
I had not seen your picture either.you used your son and I used my dad for so long.i decided it was time for a picture of me and the Mrs.

I try to be cordial unless one really pushes my buttons,thanks aghogday


You are welcome, and just an oh by the way, the picture of the child avatar was of me, not my child that passed away. :)

And I do still smile a lot, still, like the old child avatar.

I just like to play with photography like an actor sometimes, as such, just for fun, and truly in the last year iPhone selfies have been an excellent tool, to increase the nuances of my expressed non-verbal communication. :)

One of the professionals that was helping me regain my emotions, told me they actually use selfies as a therapy now to help Autistic children who have difficulty understanding and or expressing facial expressions in non-verbal communication as well as learning more about the facial expressions in non-verbal communication of others.

So, technology continues to march on, for successful adaptation to the reciprocal social communication environment. :)
oh,i never knew that


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22 Dec 2014, 3:54 pm

Well, big American companies never stop surprising me. It is a well-known fact that they have no inhibitions with, for example, assisting Nazis in murdering Jews by selling punch-card equipment to them. IBM did it for profit. Does Google get paid by Autism Speaks for processing power, or do they now assist them simply for the sake of being evil?

Google definitely knows what Autism Speaks is about: it is very unlikely that they wouldn't have used their very own search engine before signing the contract.

There would of course be many valid uses for knownledge about the genetics of autism, but Autism Speak does no way seem to be about helping Autistic people.

My next phone likely won't have Android unless Google withdraws.



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30 Dec 2014, 11:45 pm

I like that they're doing this.

While I enjoyed his book "Look me in the eyes," I don't like that John Elder Robison writes as if he speaks for all autistic people - which is ironic considering that's what he's complaining about Autism Speaks doing. I disagree with him on many of his points. I don't believe the world should bend over backwards to accommodate autistic people when successful treatments allow autistic people to better fit into the world. I know this by my own experience of minimizing my symptoms and now getting along a whole lot better with the world around me. John Elder Robison's solutions seem to be of the "give a man a fish, feed him for a day," variety vs. the preferable "teach a man to fish, and feed him for a lifetime," that successful treatments for autism can provide.

P.S. What's missing are probiotic bacteria in the gut.


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31 Dec 2014, 12:11 am

"Let's force everyone to conform. Diversity is a really bad thing, and differing ways of doing things totally never helped with the advancement of civilization itself".

AKA, no.

Goldfish, the big thing you miss is that not everyone wants to be like you. If in theory a "cure" existed, I wouldn't take it, because I'm very proud of who I am. I know that my AS (as well as my schizotypal) traits make life very difficult for me, but at the same time it gives me a lot of abilities that a lot of NTs and even those on the spectrum lack.

I don't want to be like an NT. Hell, I don't want to be a typical person with Asperger syndrome. I'm me, and I've been me for 17 years. You're sounding increasingly like a false missionary.

Also Goldfish, anecdotal evidence is never a good way to provide an argument. Actual detailed research is needed. You present none other than your own case.



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31 Dec 2014, 1:27 am

Hansgrohe wrote:
Goldfish, the big thing you miss is that not everyone wants to be like you. If in theory a "cure" existed, I wouldn't take it, because I'm very proud of who I am. I know that my AS (as well as my schizotypal) traits make life very difficult for me, but at the same time it gives me a lot of abilities that a lot of NTs and even those on the spectrum lack.

I don't want to be like an NT. Hell, I don't want to be a typical person with Asperger syndrome. I'm me, and I've been me for 17 years. You're sounding increasingly like a false missionary.


Amen to that. I wouldn't be the person I am if I wasn't on the spectrum, nor if I didn't have my other differences. My differing abilities allow me to contribute to the world in different ways. Diversity is a good thing, we need people of all types to keep this world strong.