Stop Bashing Autism Speaks!

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Not that it is of any real consequence but the records here are correct, it wasn't about five years ago, it was a response made April 11, 2010, per the link I provided of your quote. There are other records here where you directly stated you supported the organization as recently as August of 2011.

I haven't reported many facts here now, that are significantly different from the facts you have reported in the past. If you are suggesting I am spreading propaganda, I suggest you provide counter evidence to refute any facts or resources I have presented.

While I don't support the Autism Speaks organization directly, I do support the beneficial efforts the organization and it's volunteers provide for autistic individuals.

Their latest research iniatives, do have the potential to make autistic individuals lives better through better methods of identification, awareness, understanding of the prevalence of autism, and avenues for support for adult autistics in their communities.

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http://www.wrongplanet.net/postx168459-225-0.html

The reason I point it out is what you said 5 years ago, is not something I would consider reasonable, as a recent change in opinion, representative of it, nor would I suggest it is.

Your support for autism speaks research has been a consistent opinion for approximately 4 years, as the record shows. I understand you haven't agreed with merits of everything the organization has done, nor have I. That is also in the record.

I agree that the modern environment is too extreme for some autistics, that has been one of my opinions as to why life is so much harder for some autistic inviduals today than it was in the past, when there wasn't as much stimulus in life.

However, in their interview the Markram's make it clear they are pursuing epigenetic alterations to change what they describe in their theory as a devastating neurological disorder into a "beneficial one". Per the interview and the link to their actual research theory that I provided in the last post.

The potential of epigenetic alterations, means the removal or manipulation of toxic environmental agents in the prenatal or postnatal development to alter the symptoms of the disorder.

They intend through further research to identify which set of genes are predisposing to autism during pregnancy to lower the threshold of epigenetic insult during pregnancy, which is identification of autism on a prenatal basis through genetics for intervention during pregnancy through nutrition.

I personally don't have a problem with that, but prenatal identification of autism has been the biggest fear that many people in the autistic community have expressed about autism research ever since genetic research began. It's good the Markram's can word it in a way, where it doesn't appear to offend most people.

Isolating and eliminating environmental agents/toxins as what they refer to as potentially insulting to the human genome is one thing, but manipulating those environmental agents to guide the evolution of the brain, sounds like an experiment on a child that I can't see happening any time soon, at least not in the US.

They are suggesting autism can be treated by nutrients and drugs; that could be true if new effective drugs are developed, or specific nutritional deficiencies can be identified, but so far, no existing drugs or specific nutritional supplements have been shown to be effective in treating autism.

I believe in the value of scientific research. I don't question the value of the research they propose, except for the manipulation of the evolution of the brain through agents that insult the human genome; that sounds a bit far fetched to me, at least from what they state in the interview.

To date, some have dismissed drug therapy, nutritional therapy, genetic research, and prenatal testing, as part of the cure ideology; it does not represent the social model of disability, and it's been a topic of complaint every time the word autism speaks is mentioned.

Modifying the environment does represent the social model of disability, but entire schools will have to be environmentally modified to fully accommodate those that have problems with overstimulation. Any approximation of it will likely be helpful to some.

Quoted from the interview:

Just for clarification, while I think, from my own anecdotal experience as an autistic individual, the Markram's are pretty close to the mark, this theory is not based on human studies, so far.

Their theory is currently based on a study of rats exposed to the VPA chemical in anti-convulsants, and medication for bi-polar disorder, as an environmental trigger for autism.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518049/



As with all of the other current theories on autism, it has got a long way to go before it is evidenced in human beings.

Since this study, other rat studies have suggested that other toxins are associated with autism, including BPA and Pthalates, which are suggested to interrupt the endocrine system leading to potential changes in prenatal brain development, creating autistic like traits in rats/mice

The journey from identifying these toxic environmental associations in rats with autistic behavior, indeed close replicas of human genetics vital to research, and actually altering these toxins in the prenatal and postnatal environment of human beings is a journey that no research scientist has a clue on how to make at this point in time.

It's a start but there is a long journey ahead for results that impact human beings.

And there will be research worldwide required to reach that destination.

It is the research scientists such as the Markrams that make the findings and theories happen, but the research doesn't happen without funding from some governmental organization, charitable organization, university, or other source of funding.

The name autism speaks is of little importance in these efforts, there are hundreds of other sources that work together to provide funding for autism research worldwide, however the funding that organizations like autism speaks provide, make this kind of research possible.

The charitable autism research organization (NAAR) that has merged with autism speaks, has already, in part, funded research for Markram in Israel, in his effort to reach a unified theory of autism, along with other organizations.

http://www.autismspeaks.org/site-wide/henry-markram



Autism Speaks awards grants for research to third party research scientists like Henry Markram.

Autism Speaks employees neither do the research or develop the theories. And as I mentioned before, as Inventor has as well, some of those research scientists are likely part of the Broader Autism Phenotype.

has anyone heard the latest controversy in the scientific community.stephen hawking says the "stop bashing autism speaks"post on wrong plant existed before the big bang happened.the theological community disagrees,the pope has stated god created the "stop bashing autism speaks thread" first and then said:"let there be light".archeoligists and theologians are working together to desypher the earliest pages of this thread in aramaic,found in a cave in syria

In all seriousness, I think they are all wrong. The current autism/genetics/paleoanthropology, thread came before all other threads, currently here, on controversial topics/theories, as far as I know.

im glad you got laugh from my post

Your welcome, that was a pleasant break from dichotomy.

This thread starts in Sumarin Cuniform. It has just been continued here.

That was 5,000 years before Creation, and I do not believe in the Big Bang either. That thread died when Non-Banger evidence was overwhelming.

I did not support Autism Speaks before ASAN showed up five years ago.

When they returned as a team, I quit, and found the other side of the story needed work. I was not always a No Banger, I defended both sides, and other options, before coming to what I could support.

I talk to myself, a lot.

Details of that can be found on a thread with MidnightSun, where we discussed the many forms of mind, as expressed by the Caduces, two snakes entwined on a staff. More correctly, the snakes speak, I am the staff. Snakes never agree, so I have to chose, after careful reflection.

I am siding with the other snake now.

One, as said, I was the only voice of defense for five years. " I may not agree with what you say, but I will defend to the death your right to say it."

I was defending my own Principals.

I did leave the door open for them to defend themselves, but they thought we were the enemy or something. At least on the Trade Mark I expected an Attorney to clarify their obligations and innocent intent. It never happened.

When Alex was attacked for collecting illegal information on minors coming to the site, I wrote a strong defense, posted on wrongplanet, discussion, and it was moved whole to Kid's Crater. Alex fully complied with the law regarding children, and with the law regarding those who should be tracked down by the Police.

Tangerine_Man was an employee, throwing softballs in the strike zone, to a prepared reply. Several others showed up with the Company Line, So as long as they can deny it, they are trying to defend, and badly.

Fine, I can now go back to regular programing, While ideas can have merit, "Autism has a Cause", I personally always blamed it on the three Atomic Bombs exploded while I was in the womb.

It seems that view cannot be supported for those born later, or the chemical madness we now live in for early causes. The one I cannot disprove, a Virus.

Nothing else has been consistant over time. We also do not have a great track record with Virus. Polio was a hit, it is possible. Infantile Paralasis is a close model. Autism was called Infantile Schzophreania.

It fits everyone else's model, but is never mentioned? Polio also had a range, from mild to fatal.

More likely to occure in siblings, who have infected parents, but some are just carriers. All Genetic Haplogroups, are succeptable to some disorders, and immune to others.

I dropped the sugar cube as a small child, but I think Polio also ran in families.

Autism Speaks was involved in the, "Vaccines cause Autism," fight, another lost cause, but missed that one could eradicate it?

While I am rabid anti cure for those who exist, but life could be better, a Vaccine that gave everyone a mild form of Autism would be great. It would save those disabled, and reduce the endless chatter of neurotypicals.

"A touch of autism is needed, for success in the arts and sciences," Hans Asperger.

This is a hard sell in a Disability Market. But I agree with the Markrams, some modification of the human mind is in order. Perhaps through the study of autism we could learn to make a Guild Navigator.

Fact, human brains are mostly getting smaller, only African Americans are bucking the trend. Autistics have big heads. Our own culture, growing food, has cause this worldwide problem. We have regressed to our ancestors of 40,000 years ago, in the last 12,000 years.

Another fact, the spread of autism matches the spread of STDs. Universities and Silicon Valley are Hot Beds of Fornicaters! Multiable sexual partners now drives the market for king size beds! Microserfs are known for not having sex outside the company, and for autistic offspring. Tech and Higher Education keep it in the Company.

Pattern recognition.

I agree with the Markrams about the treatment of existing autistics, and about Mentats and Navigators, I read all the Dune books too. but disagree about cause.

I do not take sides, I may defend one for a while, but I am my own side.

Inventors think of a thousand things, good inventors think of why they will not work. Only the ideas that I cannot prove will not work are worth the time and effort to make work.

I am not alone in my thinking, most good inventors have written the same. It is how we process an overload of thought, and direct it to the most likely. I did a study on invention before I heard of Asperger's, mapped their traits, and guess what! Mass idea formation followed by attacking the ideas, then narrow and demonic focus, persistance, dedication, is the basic skill.

There could be several virus, outcomes do vary, innoculated everyone with non disabling Asperger's, lots of problems solved.

There could be a Mentat Virus. Computers can recall, process, but Think? For that we will always need people.

Brains are shrinking, yet overall IQ is creeping upward. We are producing more very high IQ people, which also fits with Virus.

The Markrams will at least broadly consider the future of the species.

Autism Replies TM, Is the voice from the other side.

Autism Speaks is the fluff. They bring in the money to fund the scientists. It's the research science that counts.

I support the effort of folks like the Markram's. They have the potential to find answers. They are the wizards funded by organizations like autism speaks, not unlike the guy behind the curtain, in the Wizard of OZ.

Some of the research that autism speaks is currently funding, is the same type of mouse studies, that the research organization they merged with funded for the Markram's in the past, that led to the Markram's current "Intense World Theory of autism".

Autism Speaks may be a voice in front of a curtain, but behind that curtain are an army of research scientists, not unlike the Markram's.

A Unified theory of Autism, would not be possible without those organizations that fund the research behind it. One does need to support or even think about Autism Speaks, however when one bashes the organization, one in ultimate effect, is bashing the potential good that those like the Markram's can do for Autistics; their efforts exist because of that type of funding.

Fortunately that Bashing is likely of net positive benefit to funding that research, rather than negative impact, because it is raising awareness that Autism Speaks exists across the web. Autism Speaks Website presents the research they fund in objective terms, anyone can go there see it, and judge for themselves, whether or not it has merit.

I've often heard Autism Speaks belittled because they fund Rat/mouse models of autism, this is evidence that not all autistic people fit the stereotype of science oriented folks, and some do not concern themselves much with the details of that science.

That's not the autism I experience, I like to understand those details, and I likely don't always do a good job of explaining them, but I make a stab at it.

The Markram's research illustrates just how vital autism research is. Their research makes that point much more clear, because people can personally relate to their theory. Behind that theory though is research, research scientists, rats in a laboratory, and organizations that fund that research, of which in this case the autism speaks organization is associated with.

That's good if the autistic community can get behind the theory, because it provides evidence and an opportunity to understand why rat/mouse models and autism research is vital. That has little to do with autism speaks, other than the fact that they fund that type of research along with hundreds of other sources.

I couldn't hope to defend the Autism Speaks organization, even if I wanted to, in this case; it would be like trying to oppose the fact that someone hates the New York Jets, or the First Baptist Church; however I can easily defend the fact that some Autistic people stand to benefit from research, just like some of the football fans and religious fans, stand to benefit from religion and the sport of football.

Scientific research supports all three of those hypotheses, but scientific research is not available to influence or change the opinion on whether or not they choose to hate, love, or are neutral about a particular organization, whether it is Autism Speaks, the New York Jets, or the First Baptist Church in my town. Many of those opinions are highly influenced by emotion.

The unfortunate result is when a person thinks that the element behind the organization, on an objective basis, like autism research, football, or religion is all bad, when they have limited knowledge of the benefits of these elements.

I think Autism research, football, and religion, all can be beneficial for some, there is science behind that opinion that hasn't been refuted, however on an emotional basis, I have no concern over the organizational names "autism speaks", the "first baptist church", or the "New York Giants".

In all three cases some love the organizations, some hate the organizations, and some are neutral. Life experiences cement those opinions for some. I fall in to the neutral zone in all three cases.

There is a myth that autistic people are somehow immune from emotional decisions in life, I suggest that these online forums shatter that myth.

However, in real life, it may not be as clear.

This whole phenomenon is my special interest, the Autism Speaks controversy, I believe, is a sociological microcosm that shatters some myths and stereotypes about autistic people.

By the way, if you will, please excuse my continued pedantry, but just for clarification of the record, actually autism speaks did officially defend their obligation to protect their trademark, and their innocent intentions in providing the cease and desist letter, about 3 years ago, in a public statement, regarding the NTspeaks incident.

It has been presented here many times in the same link that has yet to correct the T-shirt controversy. I guess you may have missed it, if you would like to read it, I can find the link for you.

And in the interview to autism speaks, those questions were not chosen by autism speaks they were chosen in part by some of the folks on the AFF website. That's still in the record. Nor, did Tambourine Man receive any compensation from Autism Speaks until he started blogging for the Autism Speaks site, well after the interview, which is also in the record.

And finally regarding research, there is a fascinating individual that goes by the user name "sophist" who is an actual autistic person that does autism research, that provided some of the best insight, into the current state of autism science, that I have come across.

I appreciate your opposing view, it provides the opportunity to learn new facts whether or not you find them for me, or I find them, in response to your opinions.

In the interview responses to the Intense World Theory, I think you sincerely, may find some of "Sophists" comments interesting. I'm fairly sure you appreciate autism research, in general, regardless of your opinion on the organization "Autism Speaks".

Interesting. This thread has been an education in itself.

TheSunAlsoRises

I haven't had time to read the whole of this thread, but it seems to me that Autism Speaks is treading a difficult path and it can't avoid bad press. In trying to do something good they have to do something bad. The problem is that there's no way to ensure the good bits of autism without getting the bad bits as well. Autism Speaks could pour a lot of money into helping those with autism cope with their condition. That in itself would be admirable, but I can't blame them for trying to cure a condition which makes life very tough for a lot of people. I have often wished I didn't have asperger's and could just be normal like everybody else because, regardless of the severity of the condition, emotionally it hurts. Don't get me wrong, there are some things about Autism Speaks I don't like, but I don't think there are any easy answers either.

It's amazing what can be learned through research. A study released a few days ago on the effects of internet addiction in adolescents suggests it results in changes in white matter fibers connecting brain regions involving impairment of emotional generation and processing, executive attention, decision making, and cognitive control; and additionally, impairments in social interaction are also involved.


http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0030253

This is an environmental agent, that can potentially alter the characteristics of the phenotype associated with autism and ADHD. It's not the kind of thing many people likely want to hear anywhere, but it can't reasonably be ignored, any more than the rat studies with the environmental agent valporic acid, that led to the intense world theory of autism.

The study of what environmental agents may potentially make autism an impairing condition for some.

And this study doesn't have anything to do with autism or autism speaks, nor did the first studies on rats and valporic acid that suggested that environmental agent caused birth defects in pregnancy. Research studies often eventually result in answers not related to the original purpose.

I wonder IF it's the internet in general OR a specific part of the internet.

http://www.time.com/time/world/article/ ... 34,00.html

TheSunAlsoRises

The study was focused on 14 to 24 year olds, 15 males and 2 females.

This study didn't specifically indicate the content, but another study from China indicates that 14% of individuals under the age of 29 are addicted to the internet, and of that 14%, 70% engaged in the internet activity are addicted to online video gaming. 50% of internet users, under age 29, use the internet there, primarily for gaming. The same issue that exists in South Korea, per your reference does appear to be an issue in China as well.

http://www.informationweek.com/news/security/government/225700969

This article linked below addresses other studies that replicate these studies regarding structural changes in the brain with online video gaming. Per the article the influence of online videogaming as opposed to pornography can be isolated in south korea and china, because they censor pornography on the web.

A link to new research in that article suggests that pornography potentially may have a more powerful affect; not much surprise there.

They relate the structural changes in the brain, of those addicted to online gaming, as simliar to those found in individuals addicted to cocaine.

http://www.psychologytoday.com/blog/cupids-poisoned-arrow/201106/ominous-news-porn-users-internet-addiction-atrophies-brains



As one can see, even more interesting, is that this is definitely not an internet only phenomenon, this phenomenon has been found in other areas where there are strong rewards for "instant gratification", including food addiction, and our endless supply of fats and sugars, that our distant ancestors would not have been able to imagine.

This is a powerful and hidden epigentic influence, beyond what we might normally concern ourselves with, like pollution, chemicals, medications, etc.

The world is an intense one, not only in respect to pain, but also in respect to pleasure, and each extreme has it's human consequence.

Philosophers, understood this stuff thousands of years ago, without the brain scans, through simple observation of life experiences.

Moderation........ is key. I'm not sure how some born in the last couple of decades, could even have a reference point of what that means. We likely won't see the full impact for several decades.

The problem with food addiction is reflective in obesity rates, and is not a new issue, but the newer phenomenons of extreme rewards like extreme video gaming, and extreme pornography available free to almost anyone, 24/7, is something relatively new in the last three decades, peaking in the last decade, and continuing forward.

South Korea has taken extreme action in censorship to control the problem they see with online videogaming addiction. Both China and South Korea already did it with pornography; likely for different reasons.

It's not likely any easier for some to avoid this as it is for the monkey pressing the lever for the cocaine. And, the only solution for some may be to take the cocaine away from the monkey.

And, no US politician is likely going to support such a policy; politics won't allow it. It's not just the video gaming, and the porn; it's the sugar, and the fats, and likely many other factors that aren't even being considered for study.

Earlier in the discussion the focus was on perceived negative epigenetic factors like medications, toxins, and viruses.

Those are factors beyond our ability to control in many cases.

The epigenetic factors seen as pleasurable are likely going to be just as hard to control, as research continues to provide evidence they can lead to impairments in functioning for some.

There were crack wars in the mid 80's, that some suggest were responsible for a great deal of crime in the country, as people would do almost anything to get there fix. Crack still exists but the wars have faded in the past.

Even through horrible economic times crime continues to decrease, since the 90's.

There are lots of suggestions why, backed up by research, including better law enforcement, higher rates of incarceration, legal abortion, and more law enforcment officials on the streets.

Could part of it be that crack is close to free today? In the form of Videogaming, pornography, smartphones, etc.

This epigenetic influence is not restricted to autistic individuals, but they could be potentially more vulnerable to it, because of underlying genetics related to the reward center of the brain, similiar to those studied in introverted vs. extroverted individuals.

There was one study recently done that suggests that playing violent video games keeps potential criminals inside and out of the streets, reducing crime. If so, that's a powerful influence.

Autism speaks hasn't even touched any of this research, as far as I know. It's another valid area of research, that I doubt many are going to want to hear about, if they do. The reward centers of the brain are an extremely sensitive area. There is no way to escape that reality.

aghogday,

I appreciate your posts. They are always very informative.

TheSunAlsoRises

YEA but what about those patriots 45-10 over the broncos.i was there live at foxboro.i thought this post was ok it has been a while since there was a football post on this threat.bart star was quarter back when this post started i think

The Bronco's? I thought they had changed that name to Tebow's Broncos.

Back to boring.

Now there's an amazing story of someone overcoming epi-genetic pre-natal/peri-natal adversity. I would go as far, as suggesting it may even have even played a part in his unique human phenotype.