Autism Speaks.....?

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Have you considered the possibility that autism speaks' focus is one of the things that is consistently critiqued?

Your google comment is a false analogy. Google makes no claims as to being all about autism.

What's wrong with focusing on the medical side of autism? I don't believe that autism is a single, coherent pathology but probably refers to many different things that ought to be differentiated. Some of these cause various medical problems such as repetitive behaviors and communication difficulties that could use treatment. This doesn't mean changing the person into a new person.

Tell me, have you ever undertaken any treatment for your autistic symptoms including co-morbids caused by autism? Have you ever taken anxiety meds or taken supplements like Vitamin D or melatonin?

It's not a false analogy. Autism Speaks makes no claim to being an advocate for autistic adults. It's a medical research institution. That's it, and I don't see the problem with medical research.

If we can't treat autism, what's next? Let's just say that bipolar disorder is a neurological difference with special talents as well as difficulties (it is), and people should just learn to accept it rather than trying to treat it or cure it. Maybe schizophrenics and borderlines are part of neurodiversity too.

lol. I love a good pun and your snake is very cool. I'm going to avoid the debate.

Your second paragraph is very close to Autism Speaks Policy on the issue as illustrated on their website at the link below, where they identify that some people's needs on the spectrum are acceptance, support, and employment opportunities whereas others require other types of supports including cure of remedy for difficult symptoms associated with the spectrum.

http://www.autismspeaks.org/what-autism

There is no evidence at all that the organization is providing any research dollars for a prenatal test for Autism. That is a myth that continues that has no basis in fact. All the research the organization funds is provided publicly on the organization's website, along with their statement provided in a thread I linked earlier that they are not funding a prenatal test.

I personally do not see a compelling reason to support the organization, as I would rather financially support my local organization.

This is a special interest for me, not a crusade to get people on the spectrum to actually support Autism Speaks. I guess collecting facts and figures about a charitable organization is kind of odd, but that I am.

People on the spectrum already support the organization, in community efforts across the country, where they help and speak at volunteer efforts. This website and other online "neurodiversity community" efforts do not get much exposure in the larger world for the much larger spectrum that exists out there.

Autism Speaks has an incredible outreach effort, that includes thousands of people on the spectrum, in real life, in many communities.

The greatest benefit of cooperation that does not currently exist would likely be with organizational efforts, like the ASAN organization, if there was any potential of that organization burying the hatchet. I don't see that happening, considering the resistance to change aspect of the general situation. That would more likely be of benefit to the ASAN organization than Autism Speaks, overall, I think.

Perhaps you're puzzled because your initial assumption is incorrect, and based on outdated or debunked information? Just a thought.
What you posted was a typical "Two Minutes Hate" (cf. Nineteen Eighty-Four, George Orwell) and serves about as much purpose.
I guess people respond by posting factual information and discussing that because it's more informative and educational than baying at the moon.

Who is Us? The 5 or 10 people in this conversation on this website that even care enough about the issue to respond to it, or the Nothing about Us without Us effort, that constitutes maybe up to 20K folks at tops identifying somewhere on a broader autism phenotype among 30 to 45 million people in the US on that same broader autism phenotype.

I'm thinking it might be the 5 or 10. I'm not seeing a lot of support which is not surprising at all, but I'm not seeing the hatred you are talking about in the majority of comments in the discussion. Different story on some other websites, where the hatred is real and vocal, and usually in the majority.

This issue is not likely on the radar for 99 percent of the two million folks in the US on the spectrum. 1 percent would equal 20K at tops of interest on the issue.

The majority of people studying autism, that get funded by Autism Speaks and the other 96% of funding that goes for Autism research in the US are likely somewhere on a broader autism phenotype.

They are among the Science oriented folks, that appreciate that kind of research. That might be the most puzzling part of all, that people on a broader autism phenotype do not think they are adequately represented by people on a broader autism phenotype. In this case the them described as them, may actually be Us, including many of the parents with the genetic ties with their children on the spectrum, running the show and volunteering.

I like the snake too, though.

It sounds like there are several types of HFA's.

The high-achievers, including many of the scientists researching cures for autism, engineers, etc. Then there's the unemployed ones in their parents' basement who are at the core of the neurodiversity movement.

I don't have anything against medical research but it seems Orwellian insulting that they call themselves "Autism Speaks" when they don't actually "speak" for anyone with autism. There's also the "puzzle piece" symbol and scare mongering campaign that is dehumanizing.


I don't have anything against treatment. It's just that treatment should focus on helping people cope, minimize conflict, and alleviating suffering, not on making people "normal" for the sake of others. The same would apply to schizophrenia, bi-polar, BPD, etc... Treat all people as human beings with feelings rather than as "problems" for society that need to be fixed.

Temple Grandhin agrees with that statement, from what I have heard on her general viewpoints about the spectrum and the broader autism phenotype.

There are a handful of people actually making money being part of a neurodiversity movement.

It's kind of an internet culture for the rest, as far as I can see, that I call online "neurodiversity communities".

Three elements of discussion: Disdain for Parents of Children on the Spectrum/"NT"s; Autism Speaks; and the Vaccine Controversy are bonds of anger empathy that keep the communities strong and alive with discussion.

It is the Parents that care about children on the spectrum entering into the conversation, some who agree with anti-vaccine concerns and the autism speaks efforts that are most often the dichotomy of discussion required for anger, along with anything anyone said anywhere "autistically politically incorrect", in the media.

The most recent interesting developments are that anyone anywhere will be penalized in public shaming efforts for not including someone without an actual diagnosis anywhere autism is discussed.

Most interesting is a new push not only for acceptance, but for a DEMAND of acceptance in the larger world for Autistics. And Anger is a great way to demand your rights.

That often works in the military for acceptance of orders, job responsibilities, law enforcement, and when one is young and has to do the chores.

However, it doesn't work without carrots and sticks in the real world.

I can't imagine anyone thinking it could, except for those who have never cared if they were accepted, or those just pulling other people's strings by suggesting it could work, gaining more anger empathy to keep a discussion strong.

Some of the places are interesting to visit, but I personally wouldn't want to live there.

In what way does Autism Speaks treat not treat people as people? In what ways does Autism Speak treat autistic people any differently than any other medical research institution treats people with medical problems that make them a burden to others, unhappy, and prevent them from contributing to the national economy?

It's like some people think that they are entitled to mooch off society without contributing anything in return. "Society must support us and give us free stuff, but how dare they tell us we have a problem?" That's right. Let's just condemn future generations to a terrible life of never learning to speak and never learning self-care skills just so we can feel better about our self-esteem.

While we're at it, how dare we tell Schizophrenics that they have to go to therapy and take medication, and how dare we do any medical research on how to prevent Schizophrenia from developing in children? This is just bigoted.

It is impossible for any non-profit charitable organization to raise any amount of money from the general public to help others without engaging the emotion of compassion from reasonable concern for discomfort of others.

The two videos were what one could reasonably describe as "pity porn", that are long past in the history, only repeated in certain "neurodiversity movement" elements on the internet, but there is nothing reasonably dehumanizing in the organization's current efforts, above and beyond any other charitable organization's efforts to help individuals in the population with substantial difficulties in life.

Autism Speaks has never suggested they are speaking for all Autistics with the catchy phrase "Autism Speaks". Per the words of the founder it was designed as a way to give disenfranchised families a voice who had children with the type of autism, "regressive Autism" that his grandson had. It was a metaphorical use of the phrase not a literal one.

That is not within the online autism community experience. I haven't heard anyone admit to having regressive autism in childhood in what can be described as online "neurodiversity communities" However, I have heard one person admit to having it in adulthood which is unusual., but not something I think is impossible.

In the last few years Autism Speaks has been making an effort to genuinely listen to people online, taking their word for it that they are diagnosed on the spectrum, and responding in positive ways, but so far, for the most part, it has effectively been a game for some people to beat up someone that won't fight back.

The puzzle piece has been around since the 60's beginning with the founding of the Autism Society in America, as a symbol to find answers to why children were having the very serious problems they were having, long before there was any Asperger's or PDDNOS, variations of diagnosis for Autism in the US. It has continued as a symbol for that for close to 50 years.

When a person's child stops communicating with the world, it is serous business, and time to look for answers.

Those needs are very different than the needs of others on the spectrum. Autism Speaks fully acknowledges that now. Before they were focused on what the founder was focused on, his grandson and regressive autism. It was his volunteer effort at first that has expanded greatly since then.

To put it in more concise terms as an imaginary exercise in cognitive empathy:

"My grandson can no longer communicate with the world. I've got the resources, the influence, the time, the will, and the effort to find answers to help my grandson and others experiencing this "heartbreak". (yes it is heartbreaking when a person's child loses the ability to communicate with the world) No one else seems to have an answer. I am going to do everything I can to help."

That is what is commonly described as compassion, not pity. It is an emotion filled state of mind to help others that can go over the top at times, with videos like "I am Autism", or "Living with Autism Everyday".

Other people lay down their lives for others because of this emotion of compassion. Some people consider that over the top, depending on the circumstances.

Overall, the human species will most likely not continue without compassion for others.

Forgiveness and moving on after errors is another one that is important.

I don't know what the organization is like now, but in the past the problem was that the PR "compassion" was 100% directed towards the suffering of parents with pretty much zero empathy for anyone who actually had the condition. Maybe the autism community shouldn't have taken it personally because the problem has more to do with capitalism than intentional bias. Parents are the ones with money to give so that's who they'll target. Those who don't have money to give don't exist. Money speaks.


I don't have a problem with that at all. The problem is the scare statistics don't bother to differentiate. As autism speaks and the media often presents it, 1 in 50 children will be drooling vegetables for life.


Point taken. If they are trying to reform and be more inclusive good for them. I'm not interested in beating up Autism Speaks. Just saying the issues people have or have had in the past with the organization aren't totally contrived and imaginary.


I don't really want to argue. I'm not an extremist who thinks Autism Speaks is some kind of evil eugenics program.

Thanks Marshall, unless you have followed this controversy the last couple years, I think your comments are probably reflective of what did exist a couple of years ago. I didn't like the videos then, and was not around here before that point to develop any preconceived notions.

Before someone mentioned this website existed, I never noticed any PR activity specific to the organization, so all I had to go on is their activities from the last couple of years, and historical accounts.

I actually though did have an unusual special interest of studying corporate executives, and from what I knew of Bob Welch's business philosophy, I knew that Bob Wright would not have lasted as long as he did associated with GE or NBC, if he was not of impeccable character and business acumen.

From the get go, it made me seriously question some of the "business controlled" decisions some were suggesting had been made. that were clearly mistakes if true.

I don't know too much about Bob Wrights EQ, other than he follows the straight and narrow line. What I did know was, if those "business" associated mistakes had actually been made, heads would have likely rolled. My intuition proved me correct that some internet myths had been established along with the reasonable disgust over the two videos, with the facts and figures I gathered.

I developed a new special interest. One that others do not always ignore.

FYI one of the Autism Speaks executive basically stated to her own daughter and on camera that she wants to kill her daughter, but the only thing stopping her was the fact she had an NT son who needs her.

Quote from the first page of this thread, bottom of page:



Alison Singer did not actually tell her daughter this. Her daughter was in the presence of her in a room where she was interviewed in the infamous "Living with Autism Everyday" documentary video where she expressed an irrational thought she later described as such, experienced earlier in her life while under duress, hopeless in finding needed support for her daughter.

It appears that her personal perspective, which seemed from outward appearances visually callous in the video, was that her daughter could not understand her at that point in time, in her presence, in the room.

Since then. this has become a larger issue some are concerned with in "presuming competence", in what children on the spectrum may be able to understand in communication who are more severely affected and assessed with verbal spoken and receptive language impairments along with intellectual disability

Autism Speaks pulled the video link from their website over expressed offense of the video several years ago. It remained in a video archive on their youtube site that was also pulled over a year ago, as people continued to access it and play it in online autism communities as a continued source of offense against the organization. People still find ways to access parts of it and play it for this same purpose.

I think most people would agree, at this point, that it was a mistake, worthy of offense, in including that imagery in the video documentary.

However. continued public resource provided viewing of the offensive material continues to propagate the original negative impact of offense of actually viewing it when it first came out.

That seems to contradict the original offense to me, as additional adults and children on the spectrum continue to be exposed to the reasonably offensive imagery, used now, effectively, only as a resource for an advertisement to attempt to get people to hate the organization.

That is kind of ironic, to me, because people were initially upset that it was being used in a marketing effort to elicit strong emotion of compassion and/or pity in other people, to raise donations. And now it is being used by some of those same people in marketing efforts to elicit the empathy of anger in others, in voiced attempts to reduce donations for the organization.

It seems like if the real offense was over the actual content of imagery, everyone would be happy to keep it locked up in a vault somewhere, because it is not Autism Speaks that has promoted the video documentary since years ago.

In other words, this issue is no longer in Autism Speaks ball park. The player has been drafted by other people.

Ok I was under the impression she didn't state it like some previous thought she had, but a mater of fact at that moment. That when she said it, she still wanted to drive off a bridge with her daughter, and it was only her son that prevented her. That it was something she still wanted to do.

Guess I was mistaken.