Why hate Autism Speaks

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In this case I chose the word 'pity' for the negative connotation specifically. The ASPCA tv ads with big eyed puppies and sad sad music plays on peoples emotions and appeals to their compassion. Videos of mothers driven to the point of infanticide because of how badly she and her daughter suffer with autism - it invited people to feel better about themselves because 'at least I don't have it that bad'. I'd call that a plea for pity. I see a distinction there. I understand others might not.

Where is this video ad? Puppy dogs?

I haven't had enough experience with Autism Speaks to hate them. I save hate for people who personally hurt me, and even then, I try to not hate.

But, as far as not liking Autism Speaks, for me, the number one reason I don't like them is because they are an organization by and for parents of those with autism, and yet they call themselves Autism Speaks.

As far as the various things I've read about Autism Speaks, reasons people give for why Autism Speaks as bad, some of them, best I can tell, are overstated or even downright wrong. And some aren't. For me, of the things I can trust as true, it's the combination of that name with what they are about that's most why I dislike them. It's not autism speaking, it's non-autistic parents of people with autism speaking.

click here - Just one of them - with Willie Nelson

Last edited by draelynn on 04 Mar 2011, 9:24 pm, edited 1 time in total.

The video is about cute doggies and people helping. What is the problem with that?

Love love and puppy chow.

People love animals like they love humans at times. Sometimes people hate animals and then treat them like domestic violence toward humans. Living things are similar, experience similar and in the human mind folks tend to project them to be akin to humans like having whole conversations with them and dress them up like humans.

There is no problem with the ASPCA ads. I was using it as an example of appealling to people's compassion as opposed to pity. If they were looknig for pity, they would have used pictures of starving and beaten animals.

I've asked several times for people to provide a link to or embed Autism Speaks videos here for analysis. I want to talk to people about them to find diverse interpretations. Let's look at the video you mentioned there.

Just editted the post above... click on the line that says Willie Nelson...

Autism Speaks video - 'drive off a bridge' at 4:20 - CLICK HERE

It seemed like a figure of speech. A figure of speech can be made to make a talking point stand out more. I can recall taking something serious when I was younger and people would laugh about it as it was a joke. The saying I could strangle you when someone was stressed but was a figure of speech. So people can say things at times but not really intend to do that but to make a point.

I watched the entire video I see nothing wrong with the video. These parents need respite. This is the first time I think I've viewed this video. Also I'd like to mention in the eyes of the law they got to take such threats seriously even if it was designed to make a point and there was no actual intent.

Now that I see what the fuss is about being distracted from my public relations job where I live for inclusion I'd like to make a challenge. To any public advocate saying this is pity I'd like to challenge in public debate. If this is the fuss ASAN is making to say Autism Speaks is pity when people care I'd like to offer my services to a counter protest in order to protest the ASAN organization. Saying this video is pity is hateful. Some folks need to stop being so mean, confrontational and hateful toward these folks and provide evidence that your propaganda is based on that people with autism are effected by to make them think the world hates them, wants to kill them and that they are not worthy of life. Folks you got some explaining to do and when I got the time I will go ahead and pick your side apart publicly and leave it at that.

I can also recall my mom saying when she knew I had autism very young she didn't want anymore children. I never took that in a bad way. I think I was allot of work but that's not my fault. Just wish there was more understanding then.

Nathan Young

That video and that particular moment is the cause of a terrible lot of misunderstanding.

From my perspective, this is a very manipulative video. It begins with kids in full meltdown. For those that are not accustom to seeing that, it can be horrifying to watch. I think ANY parent would be thanking whatever higher power they do (or do not) believe in that that isn't them. Throughout, the focus remains on how horrible these parents have it. Very very little is discussed at all about the children - what they are going through. I felt that the video almost made those children appear to be nothing but their outward symptoms - empty shells that do nothing but cause their parents grief and sorrow. I do not know any of those children but I think it is a fair assumption that, at least, some of them can hear and understand every word that is being said around them. In all, the video focuses on nothing but the negatives. I find that an incredible disservice to these kids and their families. I am sure a video such as this can effectively raise funds. I have no doubt about that. But using all negative reinforcement to do so definitely feels like 'pity' to me. These kids and their families need help - experienced, understanding, proactive help. All of these families spoke about exhaustion and running themselves deep into debt in trying to cope with their childs autism. If I was to make a donation, based on this video alone, I would assume that any money donated would be used to help these families care for their children. That is what the video focused on. Nowhere does that video suggest that aggressive research to end autism is the answer yet that is where the money goes.

Everyone is free to make their own decisions and draw their own conclusions. I do not support this type of fearmongering. If you have found Autism Speaks to be supportive and helpful for you, I'd be most willing to listen to your experiences. Please, try to change my mind. Because if this organization is actually doing some good, I think the autism community needs to hear it.

The video seemed to have balance to it with one part an individual with autism with their own voice saying I love you to a parent. I don't see how you get empty shell from it but parents wanting their children to improve and yes parents have a big job taking care of children with autism when applicable. Give me one or a few time spots in the video and let's discuss the sections. The higher functioning someone is and the more they self-identify with autism to others they are going to be sensitive. I am a very public advocate with autism in which thousands are aware of. When I attended church school for instance I learned allot about humility (differs from humiliation), learned about mercy and compassion. I'd see my being offended by the video even though I am not religious but just how I am as kind of selfish (for my own pride and related ego) and something to personally object to as wrong for me to think.

Autism Speaks seems to be an organization existing primary for research fundraising but at the same time allows parents to express their advocacy toward the public that can serve multiple purposes. I don't think they can pay for services for people with autism but may in the future if constructively asked provide a way for people to donate money just for the purpose of maybe some services for certain people that qualify that are in desperate need of help. Your going to have to be more specific as it seems inventing into the video seem evident for other political purposes.

Lets talk about fear mongering and relating psychosocial causalities and ethics.

[youtube]http://www.youtube.com/watch?v=6dNaZnZZxXA[/youtube]

I'm not sure I understand the point you are trying to make, ci.

Let me clarify - I, (me, personally) do not think the children in the video are 'empty shells'. One child does interrupt the interview with a quick hug and 'I love you'. I'm not inclined to pick apart each scene or each interview for the specifics. I am more concerned with the overall effect of the video, in it's entirety, on an audience unfamiliar with autism. The small things you or I may see may not have as great an impact on someone with no knowledge, or limited knowledge of autism as the overall effect of the video as a whole. They chose powerful imagery. They chose parents at the end of their rope without any sort of counterbalance of family success stories. The filmmakers chose to portray a mostly bleak picture of autism because it fit their agenda.

I agree that parents of autistic children are in extremely stressful, challenging positions. I feel the video, as a whole, suggested that these womens experiences were what all parents of autistic children face. The video focused only on extremely challenged non-verbal children. That, in and of itself, is a biased representation of autism. They only showed the most challenging aspects of autism. They offered nothing positive or hopeful.

I have no political agenda. I support autism advocates even though I am not in the position to advocate publicly myself. Not yet, anyway. All I have is my opinion based on what I've read on Autism Speaks website, the arguements of their detractors and the conclusions I have personally drawn because of them. I am suspicious of Autism Speaks motives.
I am NOT suspicious of ALL autism advocates.

Please, feel free to make your counterpoint on fearmongering and the relating psychosocial causalities and ethics. I feel I've expressed myself as best I can as to why I feel the video in question is fear based. I'm afraid I do not have the experience to expound on the psychosocial implications but, I am more than able to offer an opinion. And, ethics is a subjective field as it is. Again, all I can off is my opinion on your assertations. I simply need to know what they are. The ball is back in your court, my dear.

I think I’ve finally learned the quote function for more then one quote in a post and to separate it out to reply accordingly with organization.

When people want the hearts of minds of others (to derive compassion) they will say certain things to get people’s attention. Humility in context to this conversation may be a mentality that thinks while it doesn’t sound manly, good for ego in all possible ways and so on that they were trying to get understanding for their kids in their videos and they want you to be understanding of their children. It wasn’t a video about very high functioning individuals but individuals in that specific video and their specific behavioral needs. Autism Speaks also has information about A.S on their website and the video didn’t mention Asperger’s Syndrome and what stands out to me most about the video is the dangers to specific children when not under strict special 24hr supervision.



Autism Speaks is showing a good side then. Not just horrific images to tell the public like some advocates would like to make us think that kill us off before we are born. It was a very good positive scene.


I am. That’s my job.



I do not think they are responsible for a lack of understanding nor are they oblidged to make a disclaimer saying those kids are the worse off. Autism is a spectrum and that is becoming common knowledge and enough public awareness and self-advocates exist in the media and elsewhere to help make the public realize this. Autism Speaks has a job to raise awareness of research to improve those who need the most help but I think they may fear higher functioning individuals because of how much they have been harassed and want nothing to do with them as it puts their prerogative at risk for those who are more severely disabled.



Why would a research agenda focus on the positivity of individuals with autism who are by the way not entirely autism but have aspects thereof to make the public think why fix something so positive when socially people are confused thinking autism as a label is an entire person. Autism as a label means part of a person which manifests collectively within an individual is affected by this disability. No one goes around calling a person in a wheelchair cripples but for some reason others have reinvented autistic disorder as an entire person to be called a label as an identity. I am told where I live that autistic disorder is those who are very low functioning traditionally and I’d image this autistic name calling is new for all those with ASD so folks may not be on the same page with regards to your statement.



Since the inception of Autism Speaks a small perceptage it seems of people with autism said as self-advocates have attacked the organizations and it’s been the same mantra and very little tolerance of alternative views other then where the propaganda is sourced. In some social circles if you don’t think exactly like an advocacy ideology your one of them. I think folks are pulled in all sorts of directions socially and let me guess a few reasons out loud here.

1. Abortion.

2. Self-esteem.

3. Acceptance. (combination of the above)

Let’s think about the governing ethics and influences given the above.

Preservation agendas.

A. Abortion – developing life.

B. Quality of life – Services and supports.

C. Mainstream political influences – Combination of the above. Few actually enjoy the idea of paying for growing needs of autism in society. Mainstream politics influence micro inter-community expressions.




Many sides have fear mongering. In order for me to outline the potential biases and mechanisms psychosocially I need a dynamic at best or a singular point of social projection to isolate the potentials. Lets take the autism speaks video as a singular projection without another governing counter projection. Autism Speaks is seeking research dollars for the needs of individuals like those in the video in this context. They want to show individuals with certain kinds of needs to create understanding and awareness about those that are considered low functioning as a focus in research needs. Why would they put a higher functioning individual that does not agree with research effecting the potential outcomes of those considered low functioning or those specific children in that video. Also the public does not understand why a person that seems high functioning needs a cure especially if other high functioning individuals are ready to emotionally belittle that persons self-esteem by calling him or her a curebie and naturally a person that is emotionally sensitive like most people seem to be don’t actually enjoy feeling inferior to be displayed on T.V and saying cure me.

There is some possibilities and related conversation. I’d enjoy becoming more specific other then my generic brief here.

I think we may be discussing parallel points here, ci. I may be wrong but it seems as if I am approaching this conversation as a discussion about the psychology of media and how it is being utilized to manipulate the public for a specific purpose. You, understandably, seem to be approaching this as a discussion about weighing the benefits of an organization portraying autism as a means of fundraising and that they should not be held to impossibly high standards. I think there may be a distinct disconnect in our discussion.

(and excuse the lack of quotes... the posts are getting longer than I can concentrate on in one sitting... )

Just like any Hollywood movie, all documentaries are cut and editted and arranged to achieve the effect desired by director/organization/etc. I see this very plainly in the Autism Speaks video (it has been an interest of mine since college thanks to a wonderfully progressive class for its time on 'video anthropology'). The video was specific to highly challenged kids - kids that need 24hr care. It is highly unlikely that those kids are in meltdown 24 hrs a day yet most of what they chose to portray were the negatives. The tone of the video would have been much much different if they focused on the 'I love you' moments. The 'drive off a bridge' mom - obviously, she didn't. People are left to make assumptions as to why she didn't despite her 'explanation' of 'she's my daughter... what am I supposed to do?'. I suggest that you and I may come to radically different conclusions as to why than a compassionate NT may. Was it because it's illegal? Is it because she has high moral values? Or religious conviction? Or, maybe, just maybe, because she treasures those 'I love you' moments above everything else. If a clear explanation of that potentially explosive comment had been offered, it could have guided viewers in a totally different direction. I suspect the 'I love you' moments were that mom's motivation. A clear explanation of that would have garnered compassion. Sympathy. But that was carefully avoided by the filmmakers.

I do not agree with you that the public in general is better educated and aware of what the autism spectrum actually means. I feel the largest strides in understanding and acceptance have been made in the medical field but the public in general is still largely ignorant and unmotivated to learn anything that doesn't directly affect them. Attitudes regarding autism can vary wildly even among educated experienced caregivers. The public in general is not going to seek out that same level of education. The public gets its information from the media and high profile advocacy groups supported in the media. I feel this can lead to radical biases. While it is true that Autism Speaks is under no obligation to explain its intentions or motives, they are representing themselves as an 'authority' on the subject with aggressive marketing and high profile celebrity endorsements. This alone does not make them untrustworthy but, then again, the squeaky wheel gets the grease - the group that makes the most noise is going to get the most donations no matter what their intentions may be. This is the American way. It is not a perfect system. This particular group raises red flags for me.

I and my daughter are both high functioning aspies and I do not feel personally threatened by this video. I feel that highly dysfunctional individuals do need compassion and relief and I applaud efforts to make that happen. I remember this same tone of arguement when the discussions of the 'gay gene' came to light. If it is genetic then it can be cured... and the violent backlash from the gay community citing all the same reasons you listed. Everything from prenatal testing and abortion to eugenics and forced cures. There are two sides to everything and, usually, a whole lot of grey area in between them. I consider myself firmly in the grey. I'm not radical one way or the other. But, I still need to follow my instincts. I prefer to err on the side of caution where radicalism is or can become involved.

Of the ethical issues you listed I feel quality of life should be the first and foremost concern. I believe we need to learn all we can about autism and how best to serve, support and develop those already here, who need our intervention now and, in the process improve the lives of those yet to come. Science has been working on a genetic cure for diabetes for over a decade. It is a well understood genetic disorder within a well understood bodily system with an identified defective gene that causes it. They are working on it still - had been thought to come close to an answer several times - but a cure is still elusive. Focusing on a cure for a disorder that is still being explored in its entirety and is still not fully understood, in a system that is still not yet fully understood, without an identified defective gene to even begin research on... searching for a 'cure' seems a little premature. If Autism Speaks is advocating for individuals, this seems to be an ineffective way to do so. If Autism Speaks is advocating for the pharma companies looking for funding... it makes a bit more sense to me.

I hate to use a pop culture reference in such a serious conversation but all the same ethical situations apply. Mutants in X-Men. Marvel comics has been exploring the ethics of this issue since the 60's in a safe, non confrontational hypothetical context. It provides a safe manner for people in general to ask themselves these hard questions and find their own conclusions without any moral dilemmas being involved. As silly as it seems, if you ask people what stand they took on the mutant cure in the movie, then asked them a big question about curing genetic disorders - I'm betting you'd have alot of people scratching their heads as they realized a movie helped them figure out their ethics. Media is a powerful tool - one that Autism Speaks wields like a weapon. I pay Hollywood to manipulate my emotions but I'm rather more cautious of an advocacy group - asking for my money - who does the same.