Stop Bashing Autism Speaks!

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All this back and forth banter, while interesting, really is nothing more than "he said, she said," or, "my dad can beat up your dad" type of discussion. The talk keeps going around in circles:

"Autistism Speaks is bad."
"No, they are good & accredited people."
"No, they are bad."
"No, they are etc. etc. etc…"

The main problem with Autistism Speaks is that they have put together a public image that they speak for ALL Autistism, when this is just not so. They really only speak for a small group of parents/grandparents, and their Autistic kids/grandkids, and the trail of money & research behind them. Yes, they have a few token Aspies write some articles for their website, but that was only after some public backlash, and it was to protect their image while appeasing the public. Was this really anything more than just lip service? "Let's keep those pesky Aspies at bay, while we keep doing exactly what we want to."

Autistism Speaks does not speak for me, and I doubt they ever will. I speak for myself (as apparently many folks on WP also speak for themselves). I just wish that Autism Speaks would clarify that point.

@ictus75.whole heartedly agree.that is exactly what this 40 page monstrosity of a post is.childish nonsense like my dad can beat up your dad.i wouldnt call this post beating a dead horse,more likely beating a fossilized wooly mammouth

That's one of the largest misconceptions about the organization, the organization's founder clarified from the get go their intention was to provide a voice for the disenfranchised families of children like their grandson who had regressive autism, in calling that organization Autism Speaks. It's still posted on the website.

Recently, the founder reiterated this in the statement after the Penn Statement incident that those individuals with autism that cannot speak are the organization's first and foremost concern.

In the interview article the organization clarified they were not trying to change anything about autistic people that were happy with the way they were, and were not struggling with symptoms, hoping they would have the opportunity to make a difference in the world, with the strenghs they possess.

Tambourine man, John Elder Robison, and the owner of this site, were willing to take advantage of an opportunity to get involved with the organization. All independent individuals that made that initiative.

That had nothing to do with public backlash, it was because these autistic individuals wanted to get involved, and the organization was willing to accommodate that interest. All three individuals have been criticized for that effort among some in the autistic community.

It's not something that everyone wants to do, obviously, or something that is greeted with warm reception by some in the autistic community. They were looking out for their own interests in doing this, brave enough to withstand criticism from others, in getting involved.

The group of individuals that autism speaks reports in statistics about the 1 in 110, for the most part aren't the individuals on this website, they are those in developmentally disabled programs for third graders.

That's not a small group of individuals, it's everyone with autism that has been officially identified as having autism. It's not Autism Speaks fault that many higher functioning autistic people haven't been measured in these government statistics, and they are supporting research to correct that situation.

If you still have the perception that autism speaks is trying to speak for you as an individual, this conversation is not meaningless, because I just provided the clarification, and sources, that you seek that autism speaks is not trying to speak for you, and understands you have the ability to speak for yourself.

And, provided clarification that the 1 in 110, that the government and most other organizations speak of, is not a small group, and likely does not include you as an individual, instead individuals with developmental disabilities in special Ed. classes.

Most of the problems associated with autism speaks, and misconceptions about the organization, are because people have developed negative viewpoints of the organization, without asking any questions.

Most everytime a complaint or problem has arisen, once someone took the time to ask the organization through appropriate channels, a reasonable response was given or action was taken, as to what the complaint was.

Examples of this are the T-shirt incident, removing offensive videos from their website, the ntspeaks incident, and all the questions that were clarified in the interview that Tambourine man approached the organization with.

All of this has been the result of initiative by individuals that wanted answers or took the time to express complaints.

It's not a matter if autism speaks wants to speak for the individuals on this website, it's a matter if the individuals on this website want to speak for themselves in actual communication with the organization, when they have a suggestion, want to participate in the organization, or have a complaint.

The organization can't make anyone do this, unless they want to.

And realistically, it's a non-issue for most people.

What normally happens is one individual puts up a question about the organization, someone else responds with the same website that has been used for 2 years now, with outdated misconceptions about the organization, and the urban myths associated with the organzation continue. Some people accept it as the truth and never look for their own answers.

The end result is Autism Speaks get's free advertisement out of the deal, because so many people view this website.

This thread though, is providing factual information not just for the people that post in it, but also for the other thousands of individuals that are viewing who might want to understand the issue better.

All the resources I provide can be verified, and individuals can confirm that information for themselves, to construct their own informed, viewpoint about the issue. It's alot more than he said, she said. The he said, she said is what made the controversy what it is, because not many were willing to take the time to find actual evidence that supports those claims.

I agree, lots of people accommodate adversity and are known for success, my point though is just because someone who is historically famous or famous in general is evidenced to have some traits that look like autism, doesn't mean they would be diagnosed with an actual disorder, if they went in for a diagnosis.

In the case of Stalin it could have been paranoia, or some other type of mental illness also, there is no concrete evidence that either he or Hitler had a form of autism and there is also no concrete evidence they did not, because there is no record of a diagnosis.

Sphyliss attacks the brain and can mimmick some traits of autism, like difficulties with social interaction, and communication. That alone could have accounted for many of Beethovens problems, but we will never know for sure, one way or the other, speculation is all we have.

At the point in time Stalin was in power, autism was seen as something completely disabling, something people were institutionalized for; very unlikely anyone would have even considered that potential at that time. People are looking back on history and coming up with this speculation based on personal opinions. I've seen some speculation about the idiot savant idea, but most of what I have seen has suggested he had serious paranoia and some type of mental illness.

One could look at old films or historical accounts on parts of their behavior and see traits that one might associate with autism, but that doesn't make an official autism diagnosis, it's not something that is done without actual professional interaction with an individual.

The same applies to the rest of the 30 percent of the population that research suggests consist of people with at least one trait similiar and associated with criteria that can add up to make an official diagnosis by a qualified professional.

In the past people have suggested that somehow autism speaks efforts were going to eliminate these people from the population, by pointing out they comprise professions such as engineers, scientists, mathematicians etc.

The majority of these individuals are not the children, seriously disabled, that are not likely to ever find full time regular employment. To this point it is the seriously disabled that have gained almost all the concern and portrayal from organizations, that focus their area of attention on these individuals.

It confuses me when I hear that autism speaks is trying to speak for autistics that can speak for themselves.

If there is a problem it has been there is little identification of these individuals in the general public, and little awareness in the general public about what aspegers even is.

While that might not be a problem for someone that is surviving on their own, that doesn't want a negative portrayal of anything associated with autism, it is a big problem for individuals that are seriously disabled by the condition, have no idea they have it, and no way to get diagnosed, to gain the potential support that might be available.

It appears that autism speaks is finally doing something about that, that no one else in the US, including the government, is actually following through with.

This may help those that do desperately need help, through the research they are currently funding into the adult population of autistics.

There are a number of people that have complained here they can't afford a diagnosis; this effort may lead to affordable diagnosis for some, in underserved areas with limited access, and resources to get diagnosed. I think that is important and worth providing information about.

Do you think it's important and a topic worth discussing, relating to what autism speaks is actually doing for autistic people, that could even eventually benefit some people that post here?

It's not likely that many are aware that any organization is making this effort. It is part of what ASAN complained about regarding the governments priorities in the combating autism act. Autism Speaks is picking up that ball and running with it. ASAN would probably love to do it if they had the resources, but this is when the big bucks, come in handy. And for the most part it is being funded by the parents, families, and friends of autistic children.

The vice president of the AS organization has a son who is 18 years old with autism. The reality of the needs of the adult autistic population is no longer something that is far away for many of the parents that support autism speaks.

it was the father of kim peek that sugested stalin was an idiot savant.autism known little in the day of stalin and in the more backwords soviet union it was unknown.only a handfull of doctors in western europe and maybe new york,phillie or boston and obviously john hopkins university would have had any knowlege of kanner's writings.the doctor stalin killed or exiled to the goulags diagnosed him as schizophrenic actualy.however all high functioning autistics at that time were considered schizophrenic.that was donna williams first diagnosis too.and with beethoven its just speculation.with anyone who has never been dx by a doctor its just speculation.you were the one who mocked and trivialized famous and succesfull autistics and i simply responded

So? This is the same "organization" that gave the Susan G. Komen (for the cure) group (known for being conservative politically and socially, and engaging and encouraging the troubling practice of "pinkwashing") four stars. The American Red Cross (known for money mismanagement) gets four stars as well. It seems like ratings are given out based on popularity - not a good indicator of critical evaluation if you ask me.



I think the problem most people have with this (and correct me if I'm wrong) is that once you align yourself with an organization such as Autism Speaks, you become less objective (this would pertain more to "the owner of this site" though) Having Wrong Planet involved with Autism Speaks makes them less of an independent and objective community. (Autism Speaks is bigger and more powerful, thus more influential) Frankly, I wouldn't be surprised if this site becomes an official affiliate down the line...



Okay "aghogday," let's look at the facts shall we. (interesting choice of words there - you don't have to provide financial support to an organization in order to be a part of it)

You have (as of this writing) 3041 posts on these boards. Most of them are in this subforum, and most pertain to defending Autism Speaks. Most of them are quite lengthy.

The act of writing is a long and lengthy process. The act of writing well is an even longer one. What puzzles me is why someone would take so much time out of their daily life to write such long diatribes (although, they are good from a mechanical) defending a controversial (to put it mildly) organization if they didn't have some sort of ulterior motive. People are not that altruistic. They generally don't go to such great lengths without a payout (of some sort) in the end.

For those who think I'm being too critical - well, if you put something on a public forum (or anywhere on the internet for that matter) it is subject to criticism, good or bad. If you don't want to be criticized, keep it private.

The three individuals I brought up were Thomas Jefferson, Bill Gates, and Steve Jobs; these folks are considered icons in history, the issue though is that none of these three specific individuals are noted to have had any serious clinical impairments that limited them in a major area of life functioning.

That is a requirement for an autism diagnosis, it's not trivilizing them or mocking them to suggest there is no report of them having a clinically significant impairment in a major area of life functioning.

It is the whole reason for the diagnosis, within the psychological field, to get people whatever help is available that have problems, that can be identified. Not sure why anyone would go in to see a psychiatrist, if they weren't having serious problems in life.

Stalin and Hitler were bad, bad, people they could have probably met the requirement for several different diagnoses if they were diagnosed by a professional today. If either of them had a form of autism, that's not likely the only thing they had.

I wasn't talking about the famous folks speculated to have autism as an important topic worth discussing, course I don't mind discussing it, that question was in reference to this:

your missing the point.you dont always know how impaired a person might be just because they have great success.the problem is not whether or whether not bill gates,thomas jrfferson or yosef stalin had or have any valid developmental disorder or not.who put you charge of deciding.do you actualy know what the life of thomas jeferson or bill gates is realy like.we will never know if stalin was schizophrenic or PDD.one can have severe disability and still be successfull.roosevelt had polio,abraham lincoln was dx as schizophrenic,we know for sure PDD or not beethoven was deaf.the succeses of some people with A.S,HFA OR PDD-NOS could have to do with many outside factors as well as just actualy autistic impairment.many people with aspergers cant go to college and i have met people who were low to mid functioning on the kanner syndrome spectrum who went to yale.my point is you make to many assumtions.you never realy know who is the most impaired.all you ever do is stereotype hfa's and aspies

Autism Speaks is an advocacy group for autism, they wear what they do clearly on their sleeve, it is no secret.

We are all guests of the owner here, and many people receive a great deal of support with autism, at absolutley no cost. If Autism Speaks is making that easier for him to continue, they deserve some kind of medal, as he does also for providing something like this to individuals where there is no other source like it.

There is no evidence that anything but good has come out of the owners relationship with autism speaks.


The charitynavigator organization is a highly respected organization. The organization rates charities in years poorly when they don't meet standards and well when they do as they improve.

The organization doesn't rate the Komen group for political affinity they rate it for meeting objective standards for financial accountability, which they did very well in this year.

Same with the American Red Cross, that organization has had problems in the past and did very well on meeting financial standards inthe most recent year.

The Mayo Clinic is a very popular organization, does great work in the medical field, however they didn't meet the financial standards so they got one star.

I'm afraid your missing the key element in my discussion of autism speaks, I'm autistic.

Ever heard of someone with a special interest, that talks incessantly about it?

If you like you can look back at the record, I did the same thing with ASAN defending the good with that organization with others that were opposed to it, in the same manner, before I learned very much about autism speaks.

Before that is was philosophy, sometimes it is the Neanderthal theory of autism.

If you looked back at the record you would have also noticed that I have a vision problem that I reported well before I got any interest in this subject, that restricts my activities in life.

Thanks for complimenting my writing, it's a bit horrifying to have problems with one's vision, when they are a visual thinker, typed words are pretty much all I have that is left.

If I had no limitations in that area, this would be the last thing I would be doing. I would be working as an Athletic Director for the Military as I did, before I became physically disabled.

Special interests have always kept me sane, the real life ones are the ones I loved.

Now, that is my personal story, that I don't mind sharing.

As far as your right to criticize me as having an ulterior motive on a personal level, no you really don't have that right on this website to do it, because it is against the rules, and I have already stated I do not work for the autism speaks organization, or are any part of it.

And, if you like you can also check too and see that I have been criticized heavily in the past, and normally pay no attention to it.

I've already been through hell with health problems, there is not much anyone can do with words that is going to bother me.

I usually only say something, when I can see that the person that is being offensive is in jeopardy of their membership here, from doing the same thing with others.

Your welcome to criticize me on a personal level as much as you like, as long as you don't do it to anyone else. I'm like a computer, I'm likely to respond with facts and links.

And oh by the way, if I suddenly stop writing one day, it will probably be because I am dead, not because I gave up my special interest.

My ulterior motive is to keep living.

is there a problem here.what is going on.if there is an issue pm's would be good

i do not believe aghogday has an alterior motives for his lenthly posts,a lot of people here give long posts.my posts are so short and to the point because i cant type,i just stab at the keys with one finger.if one types quikly its not hard to write so much.aghogday is just giving the other side of the coin to people who see no good in autism speaks

I already stated I agree with you that one doesn't always no how impaired one is because of their success. I've argued the same exact point recently that Kennedy had major mental illness problems that were actually diagnosed that the general public did not know about during his tenure, as well as many other presidents at the time of their tenure. It's in the record. I've made the point often that adversity leads to success that one might not otherwise gain in life, it's in the record.

Maybe I'm not making my point clear enough.

I've already agreed with you on these points here, maybe there is some type of misunderstanding.:





My point is not that Jefferson, Gates, Jobs, Stalin, Hitler, or anyone else could not possibly have aspergers. In fact my point in this same thread is that there is no way to prove that someone doesn't have it, because one can hide it from others.

Therefore there is no possible stereotype that fits all individuals on the autism spectrum. Please show me where you think I have stereotyped anyone, to give me the opportunity to defend the claim that you are making that I always stereotype HFA/Aspies.

I've been talking a great deal about the broader phenotype of autism. These folks aren't necessarily diagnosed with anything because they are part of a broader phenotype, I'm not talking about people with HFA or Aspies when I talk about a broader phenotype that exists out potentially to 30 percent of the population.

In the case of these historical figures, as you seemed to agree with me in a previous post, no one can know for sure, it is just speculation.

The specific reason we can't know for sure in the case of Jefferson, Jobs, or Gates, is because there is no available verifiable evidence that any of these individuals had a clinical impairment in an important area of life functioning. That's just a technical fact, that is required in a diagnosis, not an opinion.

None of these individuals reported any self diagnosis either, I would respect that fact if they did.

I never suggested they can't have it, I'm just providing a technical explanation of why no one can prove it. Just as technically there was no evidence to prove that Kennedy had a form of mental illness when he was President because it was kept secret, and not information that was provided to the public until much later.

I think you are misunderstanding me in thinking I know for sure they don't have aspergers, when I say that. I never said that. I've already stated that while we can't prove some of these historical figures have a diagnosis we can't prove they don't have the disorder either.

Sorry if I've said the same thing several different ways here, but I just want to do the best I can to make sure we are understanding each other here.

.

No.

Well I know I have an issue if they are partnered with "Cure Autism Now Foundation, and just recently Republican Rick Santorum seems to support the Cure of Autism, one way or another.

In general the US government and the population of the US, supports the same ideology of research into prevention, treatment and a cure of autism through the Combating Autism Act, that has been strongly supported by both democrats and republicans, and continues to be funded by the government since 2006, through a recent extension of that act.

I don't know of any politician on record as not supporting the actual iniative, my understanding is the financial ability for the government to continue to fund it was questioned by some politicians, but the extension of the act passed with no problem.

Autism Speaks isn't a good organization to support if one does not agree that the disabling symptoms like not being able to communicate at all with the world that some children have, along with co morbids like sleep problems, and GI problems, should be researched and resolved if possible. This part of their mission is not likely ever to change.

They clarify this is what they mean by curing autism in the recent interview they did, that was presented here in this thread.

There is no longer a Cure Autism Now Foundation, Autism speaks merged with that organization in 2007, along with the National Alliance for Autism Research, NAAR.

It's all called Autism Speaks now. Autism Speaks makes all the decsions as to what research is funded.

@aghogday.ok,sorry for the misunderstanding.maybe i read your posts wrong