a plan to destroy autism speaks

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Genius potential? You know that very few on the spectrum are going to end up like Einstein and other geniuses. Don't try to get anyone holding on to some pipe dream like that.

@theimperiousdork: I've already told you: on this thread I am not a moderator.
Also those aren't orders, they're simply suggestions and advice given in a post to a forum. There is no force.

If you want to steam in throwing accusations and insinuations about that is and always has been entirely up to you.
But if you do steam in, don't expect to get any useful answers - or more likely, any at all.
That approach only ever comes across as offensive, aggressive and confrontational - and unsurprisingly, people generally turn around and walk away from it.

The retraction and the apology from the individual as well as from other individuals that provided misinformation on autism speaks per the Zazzle incident is easily found with a search on Google.

Just type in Zazzle Autism Speaks Apology in a google search and the answers become clear.

http://www.aspiesforfreedom.com/showthread.php?tid=13631

http://aspieweb.net/the-word-from-zazzle-management/

https://ballastexistenz.wordpress.com/2008/06/29/apologyretraction-re-autism-speaks-t-shirt-scandal-thing/

Here is quotes from two retractions/apologies to Autism Speaks from the links above, regarding the T-shirt miscommunication issue.





Part of the issue with the individual that jumped to the wrong conclusions, that brought the misinformation of this incident to light was that he apparently did not do an adequate amount of research into his assumption about the "parody site", that in part, led to his jump to conclusion without checking the facts on the T-shirt miscommunication. "Preconceived notions."

The original parody site, "NTspeaks", was reported to have used a screen shot of Autism Speaks website, that included protected trademarks. The analysis of the legal representatives of autism speaks determined it did not meet fair use, and was an infringement of Autism Speaks rights to their trademarks. There is a legal obligation to protect trademarks in the US, so the cease and desist letter, was provided as formal notification that the rights had been infringed upon. A cease and desist letter is not a form of litigation, however the 14 year old individual interpreted it as a lawsuit, and provided that misinformation on the internet,on the website that the individual associated with the T-shirt incident was involved in.

Since no one apparently understood the legal context of a cease and desist letter, and went along with the young girls story, someone finally asked Autism Speaks, and was provided a statement of clarification from the organization, quoted below, that there was no lawsuit filed against the young girl. She complied with the cease and desist letter, and that resolved the infringement issue. If the formal request to desist had not been complied with, there would have been the potential of litigation, but it was not necessary since the individual complied.

http://autism.about.com/b/2008/01/22/when-is-a-humorous-site-not-so-funny-autism-speaks-has-its-say.htm



This in general is how most urban myths start on the internet, or what can result from the older spoken version of gossip, well before the invention of the internet.

There is actually an NTspeaks Parody, that does not break the fair use laws, that anyone can find with a google search. The difference is that it is clearly identified as a parody site, and acknowledgement is given that autism speaks owns the rights to the trademarks; it is clear that it is not the official site of autism speaks, so there is no potential for confusion for those whom are actually looking for educational resources provided on the official Autism Speaks website.

So, an actual Parody site, done within the proper parameters of fair use laws continues to be allowed on the internet, with no criticism from Autism Speaks.

http://www.aspiesforfreedom.com/ntspeaks/

And the "superficial" support to chelation indicated on that parody site linked above, is in reference to a link among thousands of other organizations on autism speaks website that Autism Speaks offers no recommendation per alternative medically unsupported treatments for Autism.

In fact the DAN organization, that supports chelation as a treatment if heavy metal poisoning is evidenced, is an integral part of the Autism Research Institute that has now been absorbed by the ARI, a sister organization with the Autism Society of America. ASA is an organization that the ASAN organization highly recommends as an organization that one should donate to. The ASA continues a potential suggestion through research that mercury may be an environmental factor associated with Autism.

http://www.autism-society.org/research/environmental-health-initiative/environmental-health-questions.html#3

Also interesting is that on that parody site autism speaks is criticized for providing information about ABA on the website, the only intervention, so far, scientifically shown to have a significant amount of research support for the intervention effectiveness.

The website sponsoring the parody, supports ASAN, so both those organizations support chelation in a similar superficial way, by providing information or support for another organization that supports it.

Interesting how when criticism is provided it often can reflect back in the same manner for those that offer criticism, even if they are not aware that the same factors, innocuous or not, that they criticize among others, may apply to them as well.

I enjoy analyzing the facts associated with this issue, but I would be more encouraged, to see people support the good things all organizations do.

All these organizations involved in these issues do good things, but the only significant criticism of any other organization, at this point, is coming from the ASAN organization against Autism Speaks, while that same organization supports another organization ASA, that actually has more controversial opinions than Autism Speaks, per what the ASAN organization offered criticism on in the past, such as chelation, mercury as a factor associated with autism, etc. directed at Autism Speaks, when Autism Speaks publicly supports the state of science on research stating the form of mercury in vaccines is not a causal factor associated with Autism.

Yes, autismspeaks is a bully, but a complex one, with some good and some bad traits, like any other bully. Silicon Valley (a largely autistic and unbelievably powerful interest group) will eventually speak with one voice against autismspeaks's arrogant attitude towards people on the spectrum, and then autismspeaks will have to sit at the table and learn how to play nicely with the other children on the playground. This will happen in the next 3-10 years.

source?

I think you're referring to their arrogant attitude towards the highest-functioning strata of the spectrum in particular, which is what Silicon Valley would represent. Even if the research goals of Autism Speaks are undermined, the government also funds similar research. I doubt that you will be prepared for the conflict you're heading into.

I was around, I remember Alex the starving student, but he did graduate, so he did not have to pay that bill any more, and he was a worker before he graduated, Wrong Planet, Yellow Shoe Media, all on his own dime.

I joined around 7.000, the site crashed nightly. and we did not mind, it was home like. He did get around to asking for money, I and many others sent him a bit, because he provided a great service no one else did.

A used server upgrade, and the next crash came fairly quickly because the site was growing quickly.

Alex did the work, got a little support from the members, and was more informational than bashing toward Autism Speaks. Myself, ASAN and others were the radicals, Alex was a Moderate, and that combined with his chosen field, making autism videos, the inside view, did catch the eye of many, and one was Autism Speaks.

He had the track record, started this site, got an education, and had a broad view of autism. He had a Media Empire, a large following, his own production company, and the names in Autism were Temple Grandin, Tony Attwood and Alex.

That kind of talent does not come cheap. An Autism Speaks base pay is six figures, and Alex had his own crew to support. Cameras, recording, transporting, eating and sleeping, West Coast, Florida, Europe, it adds up.

Autism Speaks has the very learned, Marketing who gets them in trouble, and did have to send someone to New York Cocktail Parties, not Alex, Meeting the Bey and Beyess of the Barbery Coast, Not Alex, and to places that would not give them money, where autistic artists gathered, and Alex was a perfect fit.

He had his own cover story, was not a direct employee that could get them in trouble, and no one even thought of trying to direct him.

He was and is good public relations, and it has paid off.

Autism Speaks was a know nothing group, they hired the claimed experts, and got a Psychology text and some drug company pamflets.

They were not autistic, the people they hired were not, all they had was second hand, and they screwed up a few times. Besides being a bright young man to face down the mobs with torches and pitchforks, Alex also knew autism, and with John Robison, introduced it to Autism Speaks.

Both the writer and film maker are explaining autism, and the largest and best funded group of non autistic listened. It was real, they could understand, and life got better.

I stopped writing about Autism Shreeks and became supportive of their changing direction.

Still their words will upset some, for they are directed at the mass of the population, the Neurotypical, also called sane, which Jung would describe as the most repressed in all directions. "Show me a sane man, and I will cure him."

If you want to reach this group, or have to, "Shoot low, they are short!"

Alex is getting some good film credits to his name, developing his range, and will not spend the rest of his life doing this. It does need to be done, it is much more worthy than the "Another Zombie Movie", most film students want to do.

Alex has not sold his soul, because a little research would find the autistic are soulless lumps of flesh, without a market. For the impaired, that was meant as humor, scarcasm, or the truth.

We have not solved autism, but combined efforts do seen to be moving along together. Autistics, parents, and even Aliens in Manhatten, are making common cause.

Alex is documenting it so people in the future can comment on our funny hairstyles, strange clothes, and misuse of language.

It's also very rare that you would find a genius that is declared normal. Don't try to get anyone holding on to some pipe dream like that.

Regarding my commitment to ask Plank my questions on the issue I raised previously, I had his permission to post our conversation.

Here is what I asked him:

Here's Plank's response, which surprisingly was prompt:



Well, you be the judge.

it seems fair enough.
its not absolute proof of no wrong doing if your a hard core A.S conspiracy buff but i satisfies me for now

Normal has nothing to do with this.

Perhaps you have been reading articles about autism in Silicon Valley, but it's not a measured phenomenon of higher functioning autism, it is a measure of class 1 Autism or Classic Autism, measured in children in that area per statistical prevalence.

The concerns of the parents there, based on the actual statistics of the percentage of children with autism, is those whom are more severely impacted by the condition. There is no evidence that there is more cases of Autism among Adults in Silicon valley, other than the generally understood genetic association of families and children with autism. And there is no evidenced significant organized effort per that population, per self-advocacy efforts among adults, against the autism speaks organization.

There are likely a greater preponderance of individuals who might score somewhere in the broader autism phenotype, but that is not indicative of prevalence of actual diagnosis of a disorder, or self identification of an disorder. If you have other evidence to support your opinion please provide it. But the evidence as it exists refutes your opinion, per the actual source of the information on the prevalence of autism in silicon valley:

http://www.wired.com/wired/archive/9.12/aspergers_pr.html



Autism Speaks is a well respected charitable organization advocating for individuals diagnosed with autism in the Silicon Valley area. The organization has held successful annual walks to fund raise for Autism Speaks mission in that area, since Autism speaks was founded. The latest walk consisted of 7,000 volunteers from Silicon Valley, and those volunteers raised close to a half a million dollars for the mission of autism Speaks.

http://www.walknowforautismspeaks.org/faf/home/default.asp?ievent=993433

There has been at least one unsuccessful attempt to gather enough individuals together from a small ASAN chapter in that area, to protest a walk at San Jose, in Silicon Valley, per link below.

ASAN is a great organization by it's own right, wherever the chapter exist, but not much influence or significant participation to effect 7000 supporters of the mission from Autism Speaks that seeks to help individuals in that area, through research, awareness, and free educational resources for families of children diagnosed with autism, and those diagnosed with autism in that area.

http://www.meetup.com/aspergers-siliconvalley/events/18219911/?action=detail&eventId=18219911

All those responses sound reasonable to me.

I don't personally experience any problems with the site now that I have moved to a different browser. As far as I can see the service works great given a good browser and a good connection. I got the page view server busy back in 1 to 2 minutes, one time since I changed browsers about a week ago. It lasted about 30 seconds. Other than that the service has been lightening fast for me.

99 percent of my issues seemed to have been browser related.

As far as I can remember there have only been two or three major outages of the service in the last year, that actually lasted more than a few minutes, affecting everyone equally. Like the last one that lasted about 4 hours. Not a bad track record for a year and a half, for a site, that is completely free to use.

If you are still having problems, a change to another browser might do the trick, along with setting your browser to clear cache automatically after every session. It did the trick for me.

There are so many factors related to a good internet connection not directly related to the source, it is difficult to know at times, if the problem is with the source or a factor somewhere between that source and one's hardware and software.

I'm glad that you were able to get the answers that you were seeking, per the owner of the site.

It looks fine to me.
How do you feel about it?

Perhaps autism speaks could gain a lot by putting at least one non-neurotypical person on their board of directors....

It wouldn't be possible, unless someone with an autism diagnosis was interested in being on the board of directors. John Elder Robison, who is a member of the Scientific Advisory board, has added much for input into the organization, but has received mostly criticism from the autistic community, including being censored on at least one website.

It is rarely acknowledged that he exists as an active member in the organization, when the organization is criticized, as it is on the ASAN organization's website, and he is usually minimized as a factor when mentioned, as a token individual with autism.

Beyond this, there is no evidence that there isn't anyone with an autism diagnosis on the board of directors. It's not a requirement that anyone broadcast that information. The organization has already stated in the interview quoted in this thread that they employee individuals with autism in their organization. It is illegal to identify these individuals by name, because of medical privacy laws, as it would be illegal to identify members on the board of directors, if any of them had a diagnosis of mild autism. .

It is an established fact that several board members have children with an autism diagnosis. This is the case among most organizations associated with autism. There are some individuals with autism in the higher positions of very small organizations, but not indicated as such in larger organizations like autism speaks.

There are also no individuals with autism identified as such on the American Society of Autism's board of directors that ASAN endorses as an organization, in the same fact sheet that they endorse ASA, that receives the same standards of review on the charity Navigator organization, donates less money to direct family services, and has a sister organization the Autism Research Institute that has recently absorbed the Defeat autism now organization that recommends chelation as a treatment for individuals with heavy metal poison with autism.

Autism Speaks was criticized for having a link to the Defeat Autism Now certified doctors on their website among thousands of other resources, clearly disclaimed as a recommendation by Autism Speaks for potential services.


Note the credentials of the board members, linked below, which are much like what one sees in any large charitable organization. The credentials are a requirement to be part of the board on any large charitable organization. If there are any individuals with a diagnosis of autism with those type of credentials they certainly could be a candidate for a position on the board. But it's highly unlikely, and would not be fair if the credentials were waived for anyone regardless of disability or minority status, whether it is a specific disability, race, gender, religion, or national origin.

http://www.autism-society.org/about-us/board-advisors/board-of-directors.html


Part of the story is usually told, but rarely is the full story told.

Here is the fact sheet from the ASAN organization.

http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf

The criticisms are invalid, per their endorsement of the ASAN organization on the same fact sheet, which is reported with a similar mission that autism speaks does per stated mission goals, same overall rating and element rating per stars awarded by the charity navigator organization, no identified diagnosed individuals with autism on their board of directors, the fact that autism speaks provides more money for family services than any organization endorsed on that "fact" sheet, and as you can see referring to John Elder Robison as a token, not even naming him as a hardworking individual with autism contributing valuable input to the organization's scientific advisory board.

Autism Speaks marketing words are taken out of context in the paragraph that suggests that autism speaks portrays autistic adults and children as burdens that must be eliminated from society as soon as possible. Autism speaks has never suggested that any living human being be eliminated from the population.

And ASAN suggests that autism speaks funds are dedicated to the prospect of prenatal testing that autism speaks has already made clear that they are not funding, and there is no evidence that they are funding it in the publicly available research grants that they have awarded.

Perhaps more disturbing is that Autism Speaks will an email if one has constructive criticisms, but the ASAN organization at will can refuse to answer criticism to these invalid assertions, either in the public arena or through e-mail.

There is no method for an individual to provide comments or interact with the organization, other than those whom the organization personally selects, other than personal e-mail that they are under no obligation to respond to.

One of the reasons I mention the organization is they have provided constructive criticism to the autism speaks organization in the early days of the organization; autism speaks responded by altering elements of their marketing campaign that were suggested as being offensive, and now the organization is rewarded by answering to that criticism and responding in a reasonable manner, with criticisms that have gaping holes in them, easily evidenced with a cross analysis of the organization they endorse on the same page.

I think it is great that ASAN is finally acknowledging the value of parent run autism organizations, through proven effective organizations like the Autism Society of America, but it's not professionally appropriate to not apply the same principles of endorsement to other organizations, when the same standards are attained, and objectively evidenced.

It they don't endorse autism speaks that is fine, but it is not a professional practice to openly criticize an organization, with non-merited criticisms. It's really not an appropriate practice for any non-profit charitable organization to target other reputable non-profit organizations to discredit them. The ASAN non-profit organization is the only autism advocacy organization that I have seen do this.

The ASAN organization is now a non-profit organization in the same classification as autism speaks and ASA. They will likely be analyzed by the charity navigator organization in the coming year, scrutinized by third party evidence in the same way. While they might not provide an effective avenue to answer constructive criticism in the public arena, at this point in time, they will likely soon be subject to it, in the near future, as comments are open the general public, per those watch dog group organizations like the charity navigator organization and the BBB.

The ASAN organization is coming along nicely and does great things for individuals with autism in their advocacy efforts, but what seems like a personal issue with autism speaks, may reduce their credibility as a professional organization by anyone who peruses this fact sheet that offers non-merited criticism on autism speaks.

ASAN is viewed as a respected organization that is trusted by many autistic individuals. They are a role model of sorts for individuals that are part of autistic online communities. It can only benefit the organization as well as those who trust the organization to hold the same level of standards in providing a professional representation of the facts, like other non-charitable organizations, particularly when it concerns other advocacy organizations, whom have the same overall intentions of helping individuals with autism.