Autism Speaks is the world’s largest and most prominent autism advocacy organization. Through its partnerships with Toys “R” Us and other businesses and its stable of celebrity spokespeople, it is able to raise well more than $30 million per year.
It would be natural to assume that donating to such a medical charity would be a good thing. Advances in the efforts to cure diseases such as breast cancer and AIDS have come largely as a result of widespread public concern. Wouldn’t a few dollars one might otherwise spend on luxury items be better placed in the hands of Autism Speaks?
Contributing to an organization that speaks up for autistic individuals would be wonderful. With my donation, this group could campaign for greater understanding and acceptance of those with autism and help influence society in such a way as to be more accessible to them.
Such an organization would be well deserving of your and my support.
However, such an organization also would be pretty much the polar opposite of Autism Speaks.
Autism Speaks, whose sole concern seems to be “fix[ing]” those with autism, engages in scaremongering, distorts facts and dehumanizes those they are supposedly speaking for, all as a matter of policy.
Autism Speaks has likened having autism to being in a car wreck, being struck by lightning and being fatally ill. Autistic children are said to have been “kidnapped” from their families.
Learning to live with and understand a person’s autism-related characteristics is not an option-- autism must be defeated, and the person rescued.
This attitude has been most effectively distilled in an advertisement designed by the unrelated New York University Child Study Center.
The ad, which is presented in the form of a ransom note, reads, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning. [From] Autism.”
This variety of approach, while no doubt useful for scaring up donations, obviously promotes the stigmatization of autism.
Autism Speaks is abundantly eager to engage in these tactics. Autistic children are “stolen” from their families – soulless husks, they live lives devoid of human emotion, or so the portrayal goes.
The incitement of hysteria fills Autism Speaks’ coffers, but at the cost of further alienating a group of individuals who already face numerous social challenges.
The most unsettling example I’ve seen of Autism Speaks’ dehumanization of autistic individuals is contained in their 2006 film “Autism Every Day,” which features, among other things, a mother claiming that she would have murdered her autistic daughter but for the existence of her other, neurotypical daughter.
That this would have been an insane or at least critically misinformed choice is not highlighted.
Individuals on the autism spectrum, when not being obliquely portrayed as soulless androids, are turned into mascots.
My favorite example of this is the Toys “R” Us-associated charity that offered donators of $10 or more a complementary tote bag decorated with art by a real autistic person. Oh boy! For $20 can I get a souvenir photo taken with him, too?
How is it, one might wonder, that an autism advocacy organization could be comfortable promoting these views?
Why don’t those autistic individuals involved in the group’s running do something to moderate its speech?
The answer is that the autistic are not represented, even by a single individual, in the group’s leadership.
Perhaps having an autistic board member would betray the fact that autism doesn’t render one totally nonfunctional.
Autism Speaks is like an all-white NAACP.
The organization also spends a significant portion of its budget researching the connection between childhood vaccination and autism.
The hypothesis that vaccination can lead to autism is unsupported by any evidence and runs counter to what we do know about autism’s probably primarily genetic basis. But this has not stopped Autism Speaks from pouring funding into research on the topic, presumably in the hope of finding a link which would accentuate the paranoia around autism.
The truth is that, while individuals on the autism spectrum face difficulty integrating into a society constructed by and for the neurotypical, many autism-associated idiosyncrasies are useful and positive.
Take, for example, the characteristic attention to detail and fascination with repetition that led artist Andy Warhol, who was probably autistic, to create some of his most recognizable works.
Recognizable contemporary individuals on the autism spectrum include actors Dan Aykroyd and Daryl Hannah, singers Ladyhawke, Gary Numan, Craig Nicholls (of the Vines) and Peter Tork (of the Monkees).
In fact, many high-functioning autistic individuals and individuals with Asperger syndrome (“aspies,” for the hip) prefer to live as they are, regardless of the inconvenience, and find the notion that they must be rescued from the ravening demon of their autism insulting.
But, even if one accepts the premise that autism must be controlled (presumably through prenatal testing and abortion, as with Down syndrome), Autism Speaks remains an unprincipled organization that actually fights the understanding and acceptance of the people it purports to represent.
If you’d like to contribute to an organization making an effective effort to improve the lives of autistic individuals, I’d suggest the Autistic Self-Advocacy Network, found online at www.autisticadvocacy.org.
The next time a Toys “R” Us cashier tries to guilt you into giving a few dollars to Autism Speaks, buy yourself an oversized Chupa Chups instead.
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Hmmmm, below is a typical page from the AutismSpeaks website. Does this sound hysterical? I don't think so. While it's true that AutismSpeaks is founded on the premise that autism is a dis-order, I don't think that invalidates their efforts to help people with autism and their families. As for fear-mongering and hysteria, the "premise" adduced in this article that autism must be controlled "through prenatal testing and abortion" (Zac Smith's words, with no citation as to the source of this so-called presumption) is reckless and sensationalistic. AutismSpeaks is not founded on this "premise" - and for Zac Smith to make such an insinuation seems extremely irresponsible.
Here is a typical page from the AutismSpeaks website - you can decide who sounds more hysterical. With his rant about prenatal testing and abortion, it looks like Zac Smith is the more hysterical of the two.
http://www.autismspeaks.org/howtogrow
Teens and Adults
Riding an Emotional Rollercoaster
Your child may lean on you more as he navigates the years ahead so prepare for the rollercoaster of emotions on which he may soon embark. Let him know that you're there to guide him through any situation he may find uncomfortable. Ask the opinions of his teachers, who will help him master new skills so he'll be better equipped to interact with his peers and take on bigger responsibilities.
Teen mentoring programs such as the one run by the University of Washington Autism Center can teach him or her how to be more comfortable in social situations so he or she will know how to move in environments that may not be as familiar as home or school. You may also want to consider sending your child to a summer program especially designed for autistic teens, such as the Talisman Camp or the Stone Mountain School, both in North Carolina, where he can meet other teens on the spectrum.
With ample support and encouragement, your child stands a good chance of overcoming the initial pressures and in time, he'll learn how to adjust to his shifting landscape.
Stepping into Adulthood
Once your child is an adult, his options will depend on how high functioning he is. When he has “aged out” of public school, a vocational training program may be the next best step.
Depending on his capabilities, he may excel at jobs that require enormous amounts of concentration but limited intense interaction with others, such as computer programming or graphic design. Or, he may prefer to do something more repetitive, such as filing. If he's academically rigorous, college may be the answer. (Temple Grandin, an autism activist who's on the spectrum herself, is a renowned professor of animal science.)
In short, he or she is only truly limited by his or her own abilities and interests, which holds true whether one is autistic or not.
I don't think I've ever read an article that more eloquently and accurately describes the problem with Autism Speaks. Well done, Zac! As a member of the Autistic Community, I thank you for your advocacy work.
To the other commenter, misinformed and hysterical, it is well known within the Autistic Community that Autism Speaks is aggressively funding research that would enable them to identify and abort Autistic fetuses before they're born. Given that over 90% of Down Syndrome fetuses are currently being aborted, it's highly unlikely that a similar fate is not also being planned for Autistics.
Representatives of Autism Speaks are on record as stating that Autism Speaks is funding such research, with the inevitable result of eugenically exterminating Autistic People. I could look up the source and post it here, but no doubt one of my Autistic peers, who already has the information handy, will provide it in due course.
It seems to me that the autism rights movement does not do itself any favors by engaging in unsubstantiated innuendo and insinuation. This is an important topic, and it deserves serious discussion. Making allegations without backing them up does not advance the discussion, but derails it - if Chasmatazz claims "I could look up the source and post it here," then that is what Chasmatazz should do. The AutismSpeaks organization is admittedly pro-cure, but to leap to the conclusion that all pro-cure organizations are pro-eugenics is simply irresponsible.
LauraGibbs:
First, I'd argue that the page you've pasted isn't necessarily a "typical" page in the Autism Speaks web portfolio. Autism Speaks runs quite a few web sites -- e.g., sites dedicated to walks, autism awareness month, cure fundraisers, university chapters -- across a variety of domains. Moreover, the page you pasted isn't the sort of page that, in my estimation, the author would find objectionable. If you'd like to find an example of Autism Speaks' hysterical, pathos-laden rhetoric, I'd suggest their news pages, as well as the videos that the author very clearly references: Autism Everyday, for starters, but also their many commercials spots.
There's also the Toys R Us blurb:
http://www.autismspeaks.org/press/toys_r...
You'll notice that, throughout, autism is categorized as something to fight, to wage war against. You'll notice that cure and "prevention" -- which I think can be easily interpreted as a possible prenatal test -- are referenced frequently. You'll also notice that autism stats are compared to pediatric cancer and AIDS. Certainly, such combative rhetoric about epidemics and disease prevention might be coined hysterical, especially when the people crafting such language are not themselves autistic. There's quite a disparity in representation here. Autism Speaks is speaking *for* autistic individuals rather than *with*.
As to (in)validating Autism Speaks' goal to help families... I'm not quite sure where to start here. Good intentions often radically diverge from reality. The reality is that Autism Speaks is primarily a research organization, and, as such, very little of their funds go toward supporting autistic individuals and their families in the here and now. Moreover, by focusing explicitly on cure and prevention, and by ignoring the speaking rights of those most directly affected by autism (i.e., autistic individuals!), this org sends the message that autistic people are inherently flawed, diseased, and broken, and "we" need to make "them" more like "us."
The university I attend has recently acquired an Autism Speaks-U chapter. During their initial walk last fall, the president of my university proclaimed that "autism should not exist." As an autistic person, how am I supposed to interpret this? Autism is integral to who I am, and, as such, his remarks came across as "autistics shouldn't exist"... that I shouldn't exist, that my husband and mother shouldn't exist, that my cousin shouldn't exist, that many of my friends and mentors shouldn't exist, and so forth.
Well done. Thank you so much for linking to the ASAN page. If only they were as widely embraced as AutismSpeaks.
I understand that for many readers of this column it is only natural to take the opposite stance, if you are familiar with his previous articles and hold personal differences, but can't you see the flaw in simply arguing without really knowing what you're talking about? Of course a page from the AutismSpeaks site will represent them well. That is entirely the point of propaganda. I guess it is appropriate enough considering the attention and support AutismSpeaks has garnered from so many well meaning "advocates". AutismSpeaks is the furthest thing from an advocacy network and it sickens me every time I hear/read them claiming to be such. Calling AutismSpeaks an advocacy network is comparable to the nazi party selling itself as "JudaismSpeaks". I am rambling by now but I don't mind since I have read the handful of earlier replies that have really hit the nail on the head.
Again, I thank you for this article. I have been trying to find a way to articulate the core problems with Autism Speaks and I think you have done so very well.
Here's a quote from Suzanne Wright, of Autism Speaks.
"We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime."
The source is here:
http://www.parade.com/articles/editions/...
Note that "*eradicating* autism for the sake of *future* generations" does nothing for people now, either autistic people or their families and communities. The word "eradicate" has a long and ignoble history as a word used in various eugenics movements.
Thank you for your thoughtful comments, myergeau. As an autistic person able to speak for yourself and attend college, I can understand how talk of a "cure" for autism is something that could have a very negative sound for you.
Although it is not a perfect analogy, there is a similar debate about schizophrenia. My brother's schizophrenia was part of his identity, as you feel autism to be part of your identity. He would not have been the same person if he did not have schizophrenia. But he also might be alive today; like so many schizophrenics, he took his own life. If there had been a cure for schizophrenia, would he have wanted that? There is no way to say: I can imagine he might have wanted to be cured, and also that he would have chosen not to be cured. The point I want to make, however, is that he was not given that choice.
Even within the autistic community, there is a wide range of responses to the idea of a cure. For an autistic person who expresses the idea that she would like to see a cure, there is this statement by Sue Rubin, for example: http://tinyurl.com/adnlm
AutismSpeaks is dedicated to a cure, and there are always going to be people who want to find a cure for autism as long as there are extreme forms of autism (very different from your own). You do not think autism is a medical disorder; that is an opinion which many people agree with and it is important for that opinion to be voiced. AutismSpeaks does think autism is a medical disorder; that is also an opinion that many people agree with, and that opinion is what is voiced at their website.
It seems to me we need to be able to listen to other people's opinions and not put words in their mouths. To want to find a cure is not eugenics or euthanasia, as Zac Smith alleged in his column. Chasmatazz seconded these allegations, arguing that AutismSpeaks has a secret agenda which s/he could not be bothered to document, except through innuendo. Although your comments are extremely thoughtful, they do not in any way substantiate the claims that AutismSpeaks is dedicated to a eugenics agenda.
Instead of discussing imaginary agendas, I suggest we focus on the actual agenda of any group. AutismSpeaks remains committed to research into the vaccination hypothesis, which many people allege is a waste of their resources (I tend to agree; others passionately disagree). AutismSpeaks remains committed to identifying autism in very young infants so that intervention can begin as soon as possible (I do agree with that; others disagree, I know, and some people even contend passionately that autism should not be "treated" at all). And yes, AutismSpeaks is founded on the premise that autism is a disease that can be cured. Clearly, not everyone agrees. Discussion about this disagreement is very valuable, provided that we focus on what is explicitly stated - not getting sidetracked by alleged secret agendas and imaginary implications, and not putting words in other people's mouths.
After reading through some more comments I feel the need to add to my last rambling comment. I myself am Asperger's autistic and my daughter is Kanner's autistic (the "very different" form of autism mentioned) and I am all about TREATMENT. There is a huge difference between treatment and a cure. My daughter goes to neurosensory therapy and it has done wonders. I hope to never have to look into medication as an option but I am positive that I will never support Autism Speaks in any way shape or form. I wish the general public knew how very corrupt they are.
"All-white NAACP" is right. How can they continue to run without taking into account any adult autistic perspectives? They make a shameful display of what it is to be the parent of an autistic child. I do have many more challenges than the parents of neurotypical children but using that as an excuse for terrible parenting is despicable. We've heard about "refrigerator mothers" but if an autistic parent is unfit to raise NT children in any way wouldn't a NT parent be equally unfit to care for their autistic child? That is simply flawed logic. Who's to say we autistics shouldn't be working on a cure for neutypical stupidity? Autism is a disorder and few people would argue the semantics on that. It is highly offensive for it to labeled a disease though.
LauraGibbs, do you have any idea what you are talking about? It seems like you lurk on Zac's columns to pick fights or assert your superior intelligence... not that I believe you to be superior in any way but that you exude this stench of ego.
P.S. LauraGibbs. Almost every statement you've made comes off as condescending but most especially when you say "Thank you for your thoughtful comments, myergeau. As an autistic person able to speak for yourself and attend college, I can understand how talk of a "cure" for autism is something that could have a very negative sound for you."
and
"You do not think autism is a medical disorder; that is an opinion which many people agree with and it is important for that opinion to be voiced. AutismSpeaks does think autism is a medical disorder; that is also an opinion that many people agree with, and that opinion is what is voiced at their website."
and then you geniusly go on to complain about everyone else "putting words in other people's mouths." when you are the one presumes the previous commenter does not think of autism as a disorder. I had to reread their comment many times over but I am fairly certain that they never claimed it wasn't a disorder. It is possible to see things in shades of grey.
Once again LauraGibbs let me stress to you that I am sure you mean no harm but you obviously know little on the subject you are so assuredly speaking about. I don't mean to dwell on any of this or harp on you but it is important that you realize how very important this topic is to many people and how grateful the autistic community in general is to have the many core problems with AutismSpeaks addressed in this article.
VelvetGunpowder, I don't see what in my comments makes you think I do not realize how important this topic is to people. Is there something in my comments that says to you that I do not think this is important? I wrote my comments because I do believe this is very important.
Meanwhile, your comments do not really make it possible to have any kind of dialogue. You are free to make ad hominem attacks against me and against anyone you want (it is a free country), but those kinds of personal attacks don't really serve any purpose.
You also say that AutismSpeaks is corrupt and "I wish the general public knew how very corrupt they are." Well, how corrupt are they? If you want to make allegations like that, please define your terms and provide your evidence.
The main point I was trying to make is that there is a whole range of beliefs and opinions about this subject. That makes the need for dialogue really imperative. There is not going to be universal agreement, but if people share what they know, we can all learn from that. If you are just going to make unsubstantiated allegations about AutismSpeaks with inflammatory language (as you have done here), that does not help anybody learn anything.
I'm afraid I may have succumbed to someone else's attempt to shift the focus here, and I'm sorry about that. Zac's reference to prenatal testing came in a side note, in one short sentence, and was in no way the main thrust of his article.
Yet that one sentence accurately echoed the thoughts and fears of the Autistic Community. Abortion is a well established "solution" to the dilemma of disability. There's no disputing that fact, and proving it is not our burden. Nor do we need to recant the frightening history of the eugenics movement. Our fears are reasonable, and need no justification.
It is we who need assurances. Assurances which have not been forthcoming. Autism Speaks won't even acknowledge our viewpoint, let alone accommodate it. What we have is an organization committed to genetic research, (Autism Speaks is not, as someone else suggested, committed to research into the vaccine hypothesis - that's only a recent, probably token, development). The writing is on the wall, except for those who refuse to see.
To those who think we need to keep discussing this, to those who think we want to hear the same tired, false arguments we've been listening to for at least a decade, we see your noise-making for what it is, and we won't be sidetracked anymore. The time for "valuable discussion" is over, and the time for change is here.
Once again, I apologize for helping to derail the discussion, and hope to return the focus to Zac's brilliant essay, and the many valid points he makes. Again, I thank you Zac, and appreciate what you've done.
LauraGibbs -You are quite correct for once... I don't intend on having a proper dialogue with you. Do you realize how pompous you seem?
I don't speak for everyone who has read your comments but most autistic people who has read this column (trust me, I didn't bother to gripe about you while linking it) and discussed it were horribly offended by you. You are one of the worst kinds of bigots. Self-righteous, well meaning and ill informed. I hope it is a coincidence that you have the same name as a staff member at OU. If you are indeed an educator I hope you realize that you are breaking the American Disability Act with YOUR inflammatory language.
I have no problem seeing that there are multiple views to any subject. I hope someone with a cooler head than myself can help you "learn" about this topic. You commented about my use of inflammatory language but haven't I seen you negatively commenting most of Zac's columns? I wonder what you would have thought if I hadn't been working on filtering my thoughts before sending them out to the public and had blurted out my first thoughts on you.
It would have been along the lines of saying "no wonder you are foolish enough to fall for Autism Speaks' front, you fell for the Christianity ruse. Can I assume you are a registered Republican?" but that would actually be inflammatory. My disgust with Christianity and the Republican party have no place being mentioned here.
Regardless of any words exchanged between the two of us the claim that Zac Smith is more hysterical than AutismSpeaks is audacious to say the least. Have you been able to disprove a single statement in his article? I doubt it.
http://www.autism-hub.co.uk/autism-speak...
VelvetGunpowder, I am sorry to see that you devoted your post to attacking me rather than explaining your claim about AutismSpeaks ("I wish the general public knew how very corrupt they are"). Maybe you will decide to substantiate your claims in a later post.
As for your personal attacks on me, that has nothing to do with the matter at hand. As for the statements and misstatements of fact, aside from all the innuendo and insults:
Yes, I am a staff member at OU.
No, I am not a Republican.
No, I am not a Christian.
No, I do not comment on most of Zac's columns; most of them are not of interest to me.
As for the supposed statements of fact in Zac Smith's article that I have disproved, how about these related statements: Zac claims that, according to Autism Speaks, "learning to live with and understand a person’s autism-related characteristics is not an option" - and "Autism Speaks remains an unprincipled organization that actually fights the understanding and acceptance of the people it purports to represent." These are sweeping and inflammatory statements which I believe are clearly disproved by the information I provided in my first comment.
"...sweeping and inflammatory statements which I believe are clearly disproved by the information I provided in my first comment."
I do not think they are disproven.
The only reason I insulted you was to illustrate that I was resisting inflammatory speech earlier. I actually left out the vulgar bits that are still crossing my mind.
I hope you looked at the link I left. It might provide better reference to what so many of us have found objectionable about AutismSpeaks.
As an autistic person, I'd like to applaud you on this article. Well done and well said.
You've going to have a lot of incoming links in no time.
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