Autism Speaks: it’s time to listen

18 Dec

I’ve always found the Autism Speaks motto ironic: “Autism Speaks. It’s time to listen.” Change he period to a colon and you get “Autism Speaks: it’s time to listen”. And, please, could you start listening, Autism Speaks?

Autism Speaks got off to a rocky start. Although they claimed an ” overwhelming positive response from the autism community”, the rollout of the organization was met with much criticism. Autism Speaks co-founder Suzanne Wright adhered to the “missing child” model of autism with phrases like: “It is as if he’d been kidnapped, or somehow had his mind and spirit locked in a dark hole deep within him”. She also had the parent-centric model of the autism community with phrases like “Such an effort must be driven by those with most at stake: the parents of autistic children.”

Shortly after their launch, Autism Speaks released a short film, Autism Every Day. While Autism Speaks told themselves and the world that the response was positive, in reality there was a great deal of negative reaction. (e.g. here, here, here, here, and more.)

It took years, but eventually Autism Speaks listened. The video disappeared from their website and YouTube channel.

Another video debacle came in the form of “I am autism” which depicted autism as a sinister monster stealing babies and ruining parent’s lives. Here’s the transcript in case you think I’m exaggerating. The video is now also removed.

Every now an then, I feel hope for Autism Speaks. There are some really excellent people at AS. AS took on the phrase “different, not less“. Sometimes a blog post comes by that I particularly like. And a lot of their research portfolio is quite good.

Then you get announcements like this one: Autism Speaks to Washington – A Call for Action. And we see that we are back to 2006. We are back to “I am autism” but this time it’s phrased “This is Autism”.

As a result of that opinion piece, John Elder Robison quit. He was one of the few (if not the only) autistics working in a high profile position with Autism Speaks. Here’s a section from his article, I resign my roles at Autism Speaks:

For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.

A newspaper in Palm Beach, Florida (where the Wrights have a home) published the article: Autism Speaks post rattles some readers One board member resigns, saying he can’t stand by co-founder Suzanne Wright’s views. While they couldn’t get a comment from Mrs. Wright, they did get some statements from Autism Speaks itself.

Autism Speaks took the old cop out. Whenever there’s a discussion of whether a depiction of autism is demeaning, one can count on hearing the argument that the discussion is between parents of “severely” autistic kids and “high functioning” adults.

Michael Rosen, executive vice president of strategic communications at Autism Speaks, said Robison was the only one who resigned over the post. He said the organization understands that higher-functioning people with autism may have a different point of view about the issue.

“The people who are not sick, not unhappy, and are totally fulfilled and happy with their differences, we totally support them as well,” Rosen said. “We’re not looking to change anybody, we’re looking to support and get services for everyone who needs them.

“What that column had was a lot of empathy for those who are struggling the most. But for those who just need support and services, we work for them as well.”

Eight years ago Autism Speaks could pretend to be ignorant of the fact that much, a great deal in fact, of the criticism they get is from parents like me. Parents of children. Children who are “struggling the most”.

Then there’s the old “they see autism as a good thing” bit:

He said some people with autism feel it’s “a good thing” that just makes them “neurologically different. It’s a matter of diversity, and diversity is a good thing. We understand that and get that. They’re proud of their diversity and we salute them.”

Unless John Robison was VERY different at Autism Speaks meetings than the John Robison I’ve seen at IACC meetings, Mr. Rosen had no business saying what he did. Perhaps he could have read Mr. Robison’s resignation article:

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.

It’s so much easier to build the straw man that criticism comes from those who are “totally fulfilled and happy” than to face the criticism head on.

Doing a quick google search, I found these criticisms of Mrs. Wrights op-ed:

A Reporter’s Guide to the Autism Speaks Debacle
by Lucy Berrington, autistic adult

AWN SQUARES OFF WITH AUTISM SPEAKS OVER NATIONAL AUTISM PLAN
by the Autism Women’s Network

A Poem For Suzanne Wright. A Call To Action; A Call To Be. November 15, 2013
By Cheairs Graves, mother of an autistic child.

no more – a letter to suzanne wright
by Jess, mother of an autistic child.

The Price We Pay for Autism Speaks
by Heather Clark, mother to two autistic children

Why Autism Speaks Doesn’t Speak for Me
by Emily Willingham, mother of an autistic child.

And there’s more. I did run into a couple articles supporting Mrs. Wright too. But this isn’t about who has more articles, it’s about the fact that Autism Speaks chose to frame the discussion in a very simplistic and, frankly, insulting way. They dismiss the criticism and ignore the fact that much of it comes from parents. The people Autism Speaks claims to represent in this discussion.

Autism Speaks: it’s time to understand.


By Matt Carey

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21 Responses to “Autism Speaks: it’s time to listen”

  1. Julian Frost December 18, 2013 at 06:36 #

    Thanks Matt. The responses I’ve seen to Autism Speaks’s latest misstep have been universally condemnatory. Some autistics are now boycotting its sponsors.
    Autism Speaks messed up, and they’re now doubling down instead of admitting it.

  2. Shannon Des Roches Rosa December 18, 2013 at 06:36 #

    Thank you for writing this. Nick Walker’s “This Is Autism” is also a must-read on the topic: http://neurocosmopolitanism.com/this-is-autism/

  3. Dave December 18, 2013 at 13:44 #

    I think you described pretty well how I feel about Autism Speaks. I agree with their goals, mostly, but I sometimes feel like they represent a pretty small portion of the autism community.

    I don’t know if it was directed toward Autism Speaks, but In one of your previous writings, you talked about organizations that spend endless dollars researching the “cause” of autism, and hardly anything on treatment. (I think it was from LBRB, but anyway the comment stuck with me.)

    From the point of view of the autistic adult, research directed toward the “cause” of autism must seem like a waste of time at best. Their interests would be better served by paying for medication, or helping with assisted living, or figuring out how best to hold down a job, or any number of day-to-day issues. By ignoring these needs, we are ignoring what autistics usually “speak” about.

    I am interested in the causes of autism, but I understand why my son might view that as a selfish interest. It might lead to a decrease in autism in others, but is not likely to impact how he deals with the world.

    It might impact how the world deals with him, but that is not exactly under his control.

  4. Shelley Ross December 18, 2013 at 22:38 #

    Missteps are growing pains. I hope everyone can work together, move forward together. Don’t let this house become divided.

    • Sullivan (Matt Carey) December 18, 2013 at 23:33 #

      8 years of missteps are a trend. A very clear trend. Not growing pains.

      There are good people and some good work going on at Autism Speaks. I’m happy to work on areas of mutual interest. But I am not and will not be in the same “house” as people who make it more difficult for my kid to get respect in this world.

    • chavisory December 19, 2013 at 00:16 #

      The house is divided, Shelley, because Autism Speaks is working for a future of humanity that does not include my people.

      These criticisms are not new. Autism Speaks has had every chance to listen and understand. We cannot stand by their fundamental goals and priorities.

  5. chavisory December 19, 2013 at 00:13 #

    In the immortal words of Emeril Lagasse:

    BAM.

  6. Paula C. Durbin-Westby December 19, 2013 at 04:23 #

    I made a page with many of my blog entries about Autism $peaks. http://paulacdurbinwestbyautisticblog.blogspot.com/p/autism-speaks-does-not-speak-for-me.html

  7. Saraquill December 20, 2013 at 15:50 #

    Why does AS spend so much time and resources insulting the people they proclaim to be standing up for?

    • Sullivan (Matt Carey) December 20, 2013 at 20:01 #

      The short answer is because Katie Wright has these views and she influences her parents. They probably do not understand that these viewpoints are insulting, at least to the degree that I see it. Also, they feel that if you are able to understand that these are insulting, you aren’t “really” autistic. Since so called “real” autistics are not going to read or understand what they write, they won’t be insulted. And since it is for the autistic’s own good, what’s the harm? Especially when one has the viewpoint that the parents are the primary focus, not the autistics. And, besides, this is the “reality” of autism, in their view. One can go on and on, but it’s a very damaging and poorly thought out position they have.

      Which begs the question–when Bob and Suzanne Wright step down, will AS get better (people not listening to Katie Wright as much) or worse (Katie Wright stepping into an active role in the organization). AS had to distance themselves from Katie Wright years back. Her views are very unscientific and, frankly, AS would lose a lot of donor support if her viewpoints on how to spend research money were put into practice.

      AS will continue to put out damaging messages. If history is any guide, we will see a year or two of relative quiet, then some video, opinion piece or other statement that reminds us all that, yes, AS’s leadership has not changed their opinion.

    • Dave December 21, 2013 at 11:25 #

      In defense of AS, they have agreed both publicly and privately that the “autism community” is amazingly diverse. If you read between the lines, this means that something one person perceives as an insult is a simple fact of life to another.

      Somewhere between 60% and 75% of autistics have an associated intellectual disability. Even if AS is making an unfair portrayal of my son, they are pretty much correct about the vast majority of autistics.

      If AS were to gear its message toward the minority of autistics with average (or above-average) functional IQ, then their message would be every bit as insulting, just to a different group of people. More importantly, instead of accidentally insulting the small minority capable of supporting themselves, they would be insulting the large majority that cannot.

      Because the autism community carefully watches every word that comes out of AS, we tend to become offended and over-react to every poor choice of wording.

      If you look at what they do, on the other hand, it is hard to argue that they are spending time and effort insulting people.

      from their website:
      “In 2013, Autism Speaks committed close to $5 million in new funding through its Science grants and fellowships programs. This investment in innovative research will lead to improvements in diagnosis, personalized medical care and the development of new treatments. Through its Family Services grants, Autism Speaks committed $1.2 million to local service providers in 2013. The grants will help create new and expand existing local programs to improve and enrich the lives of individuals with autism.

      “With 500,000 adolescents with autism transitioning to adulthood within the next decade, Autism Speaks focused efforts to meet the needs of the growing adult autism population. A series of small business town halls took place across the U.S. to create employment opportunities for the autism community. In addition, Autism Speaks announced the results of a first-of-its-kind housing survey. The survey, which received more than 10,000 responses, will be used to foster new strategies for better access to housing and residential supports and more options for the autism community.

      “Following the disappearance of several individuals with autism, Autism Speaks committed itself to addressing the issue of wandering. A partnership was formed with the Guardian Angels to raise awareness of wandering and to provide families and caregivers assistance when a loved one who has autism goes missing. The Autism Speaks Autism Response Team can now be contacted and the Guardian Angels will mobilize a local team to assist with search efforts.

      “Autism Speaks also launched its Early Access to Care initiative to reduce the average age of diagnosis and increase access to high-quality early intervention for all children on the autism spectrum. A pilot program was formed with the National Black Church Initiative to raise autism awareness in the African American community, and autism screening events took place across the country to provide low income and minority families access to early intervention services. In conjunction with Early Access to Care, Autism Speaks launched a new PSA campaign with the Advertising Council to raise autism awareness in the African American and Latino communities. The PSAs are currently running in media outlets throughout the nation.

      “In November, Autism Speaks was joined by hundreds of advocates in Washington, DC for its first “Autism Speaks to Washington” autism policy and action summit. More than 260 parents and their children with autism, self-advocates, leading researchers and activists from across the nation took to the steps of Capitol Hill and visited all 535 members of Congress, demanding a strategic national autism plan.

      “As a result of the summit, five additional members of Congress have signed on to the Congressional Autism Caucus, a bipartisan group in Congress that helps lead the federal response to autism. In addition, 60 members of the Senate have now co-sponsored the Achieving a Better Life Experience Act (ABLE Act – S. 313/H.R. 647). Introduced in the 113th Congress, this bill would provide an improved quality of life for individuals with disabilities through tax-free savings accounts.

      “On the global front, Autism Speaks’ awareness efforts continued to inspire millions of people. More than 8,400 buildings, landmarks and communities on all seven continents participated in the organization’s annual Light It Up Blue campaign by turning blue on World Autism Awareness Day on April 2. Autism Speaks’ international efforts also brought together 50 first-spouses and dignitaries at its World Focus on Autism in September. The annual event promotes autism awareness and highlights autism as a global public health issue around the world.

      “Autism Speaks concluded 2013 by donating 800 iPads to financially disadvantaged individuals with autism, as well as teachers and social workers. The iPads were mailed out just in time for the holidays to recipients in 46 states, marking the end of a dynamic year in support of the autism community. ”

      Can you name any other organization that has done as much (this year) for the autism community? I cannot.

      • Sullivan (Matt Carey) December 21, 2013 at 15:31 #

        I acknowledged that there are things I like about AS. But, can you name another organization that has caused as much harm? Sure, there are a few, but AS is near the top with messages like this.

        I donate money to autism-related charities. AS has never received a penny from me. There are groups that do good without doing harm.

        “Somewhere between 60% and 75% of autistics have an associated intellectual disability.”

        Two problems with this argument. First and foremost, autism and disability in general is absolutely about recognizing the situation of a minority. Suddenly arguing about who is the majority is not a good approach. Second, the number is under 50%, probably less than 40%. As autism prevalence estimates rise, so does the fraction without ID. Consider the CDC ADDM network estimate.

        When data from these seven sites were combined, 38% of children with ASDs were classified in the range of intellectual disability (i.e., IQ ≤70 or an examiner’s statement of intellectual disability), 24% in the borderline range (IQ 71–85), and 38% had IQ scores >85 or an examiner’s statement of average or above-average intellectual ability.

        Also consider the next sentence:

        The proportion of children classified in the range of intellectual disability ranged from 13% in Utah to 54% in
        South Carolina. The two sites with the highest proportions of children classified above the range of intellectual disability
        (IQ >70) were Utah (87%) and New Jersey (73%).

        The two states with the highest prevalence estimates are Utah and New Jersey. I believe the other states will slowly converge on numbers similar to New Jersey.

        So, not only is the idea of claiming that autism+ID the majority of autism a bad argument in general, arguing that the needs of the majority should be considered most strongly will result in less attention paid to the autism+ID population.

        Because the autism community carefully watches every word that comes out of AS, we tend to become offended and over-react to every poor choice of wording.

        We are talking here about the way the leaders of the organization see and want to frame autism.

        If AS were to gear its message toward the minority of autistics with average (or above-average) functional IQ, then their message would be every bit as insulting, just to a different group of people.

        If AS took the same approach, sure. First, as already noted, the majority are those without ID. Second, my guess is that Mrs. Wright would be insulting if her grandson had a high IQ as well. That doesn’t mean that when others speak about autistics without ID that they will, by definition, insult those with ID. It just means that Mrs. Wright’s approach is insulting.

        The thing is that Mrs. Wright (or at least those who can help her edit her op-ed) has the talent to frame the message about the difficulty and the challenges of autism without using cheap scare tactics like she did.

        Consider another person whose statements were way off the mark this year: Amy Lutz. One person Ms. Lutz targeted was Amanda Baggs, as a “high functioning all is happy” type autistic. I’d invite you to read Amanda’s blog and tell me if that depiction has anything to do with the real day-to-day life that Amanda has described. Amanda talks about very real and serious challenges she faces. She does it with dignity and respect. Read Shannon Rosa’s discussions of her life with Leo. Or Jennifer Meyers. Or many others.

        Suzanne Wright shows a remarkable lack of imagination in her framing of the situation. A lack of “theory of mind” about the impact her statements have on others.

      • futuredave5 December 21, 2013 at 17:40 #

        Matt,

        I understand what you are saying, but I am not sure the CDC report is sufficient to classify all autistics. First of all, it is only talking about children. I can see several situations where a school might mis-report the relationship between autism and ID. For example, the article mentions that only about 79% of the autistics in the study were even classified as “ASD” by the schools. If the schools are missing up to 20% of ASD diagnosis, then it is not much of a stretch to assume they might be missing some cases of ID as well. The CDC study re-evaluated children for autism, but did not re-evaluate the ID diagnosis.

        Other studies have come to much higher conclusions, using similar criteria. http://www.intellectualdisability.info/diagnosis/autism

        But I understand your point. Autism advocacy should not be just geared toward the majority. The talking points that AS uses tend to focus on the majority (or how they perceive the majority) but that does not necessarily mean that they are ignoring everyone else. If you look at the work they do, I could make a fairly god argument that they do not.

        Would it be insulting to imply that autistics are just as smart, capable, and independent as everyone else? Perhaps it would be less insulting, but it would still be a disservice to certain autistics. Even by the definition you are using, there are a huge number of autistic children on their way to adulthood who need a lot more than a pat on the back and an encouraging word.

        If we imply that research, intervention and treatment are not necessary, then we are denying service to hundreds of thousands of autistics who desperately need it.

        AS has chosen to focus on some “worst case” scenarios, which is their right. You don’t raise money for breast cancer research, for example, by talking about the 99.99% of the population who did not die from it last year.

        In your article, and in your responses, you have re-phrased the question to focus on the attitudes of the individuals in the organization, rather than the work done by the organization. Since I don’t know any of the people you mentioned, I can’t comment.

        But few of the organizations I work with are perfect. They do the best they can, and every once in a while, they make statements that bother me. If so, it is certainly your right to donate to your preferred alternate.

        I am not sure it is fair to say that they have harmed you or your family in any way. They might be dealing in stereotypes, but I am not sure that adds up to harming me or my son. Most people that I know didn’t get the stereotype from AS, or from any other single source. Blaming AS for the stereotype is like blaming the quota system for racism.

      • Lara Lohne December 21, 2013 at 17:41 #

        Regardless of whether or not A$ insults autistics (they do, significantly) the bottom line is there has never been an autistic in any meaningful role with any meaningful voice within their organization.

        A$ operates on the foundation that non-verbal means non-human and less than everything, believing that if a person cannot speak then they also cannot understand. There are a significant number of cases where that is obviously not correct, within the autistic community as well as outside of it. Being verbal also doesn’t mean lack of ID or other challenges.

        A$ completely ignores the current adult population that exists and is growing also with new adult diagnoses every day. They refuse to see us. In a statement made at their so called Policy Summit, one individual actually said (this is not a direct quote) where are the adults with autism, we have looked and we just can’t find them. There was a group of autistic adults outside protesting though, yet they quickly turn a blind eye to them thinking they can speak and get around on their own so their autism doesn’t count. RUBBISH!

        Autism is a difference in neurology, at all levels of impact. There isn’t any way to cure someone of their neurology, short of giving them a new, unaffected brain. It is not a disease, it isn’t something that people suffer with, unless of course the people around autistics refuse to see them as people, worthy of love, acceptance and support but merely as burdens and drains on life, finances, etc. Or even if those who are not severely affected but moderately to mildly affected are not given the respect they need and support for the very real challenges that we face. My son is not severely affected, he is mild to moderately affected, he is verbal now, but has very little spontaneous expressive language, he is extremely echolalic. He understands everything though, there is nothing wrong with his receptive language. His teachers at school did not accept and/or recognize that he has expressive language issues, even when I pointed it out to them. They were not able to recognize the echolalia, and didn’t take my concerns seriously when I brought them up, not until it was pointed out by an adult autistic advocate to them did they start to understand. AS still doesn’t understand. They see verbal ability as the end all and be all of challenges in autism. They don’t get autism at all, and they refuse to allow autistics to help them understand better, not only ignoring us when we try to speak out but actively silence us when we protest them peacefully by sending police to have us removed, which cannot actually happen since we protest peacefully and we are never on private property therefore there is nothing illegal about what we are doing so A$ can’t actually do anything, though they try, over and over to have us silenced and when that doesn’t work, they suck their fingers n their ears and say, “LALALALALA”.

        THIS is why A$ insults autistics, they lump us all together in that 3million number they like to throw around, but the vast majority of autistics, those who can speak, and adults, are completely overlooked as non-existent. We don’t exist because we can speak, we aren’t their target population. But there are many activists speaking out and protesting A$ who are in their target population, Amy Sequenzia is one example. She has a blog, look her up. She’s an amazingly warm funny and intelligent person. She’s autistic, non verbal and unable to do most day to day tasks on her own, but she writes her own blog and participates in social media. She is their target population and she finds their message insulting. They ignore her also when she tells them how hurtful their message is. Bottom line, A$ is not in the business of helping people, they want to eliminate us and prevent us from happening again, as if we were some kind of embarrassment to the human race. Personally, I find them to be embarrassment, just as I find white supremacists an embarrassment. We will end A$, because the only thing they will listen to is money and we have already begun to affect changes in their corporate sponsors with our boycott. They will either fall, or they will make changes within their organization so they are inclusive or autistics and not only listen to what we have to say, but act on it so the funding they bring in can go where it will help the most. Right now, their search for causes so they can cure and/or prevent us is HUGELY insulting and a severe waste of good funding that could go toward helping people who really need help now.

      • Julian Frost December 22, 2013 at 09:06 #

        My two cents.

        Can you name any other organization that has done as much (this year) for the autism community? I cannot.

        Autism Speaks gets more funding than any other autism organisation. A disproportionate amount af that funding goes to overheads.
        This is not just about what they’ve done, it’s about what they could have done with their funding. In terms of “bang ber buck” Autism Speaks stacks up very poorly.

        More importantly, instead of accidentally insulting the small minority capable of supporting themselves, they would be insulting the large majority that cannot.

        The majority of autistics are more than capable of looking after themselves. You are very ignorant, not to mention insulting and patronising.
        Finally, and most importantly of all, Autism Speaks uses rhetoric that dehumanises autistics. That may not be their intention, but that is the result. People have received lesser sentences for murdering disabled people simply because rhetoric like that has an effect.
        Autism Speaks has been told these things over and over. Instead of listening, they have doubled down and insulted their critics. They deserve the slamming they are getting.

      • Dave December 22, 2013 at 10:37 #

        Julian,

        I see your point. When someone insults me, as you did, I no longer want to listen to anything that person says. If you were making an ironic comparison to the language of Autism Speaks, then Bravo.

        But rather than dismiss you as a troll, lets look at the points you made.

        I agree that you could get a better bang for your buck at Autism Research Institute (for example) or the Doug Flutie Foundation. But to an extent, this is the price of raising money these days. Of the $55 million budget, AS spends about $20 million on fundraising and administrative. The Autism Society of America spends much less on fundraising, and (as a result) has a much smaller budget. Smaller budgets do not make one more ideologically pure, they just allow you to do less work.

        As to the argument that AS sucks up dollars that would otherwise go to “better” charities, I doubt it. There is good research on how professional fundraising works, and the general rule is that too many nonprofits are lauded for how little they spend — rather than what they get done. Instead of equating frugality with morality, we should reward charities for their big goals and big accomplishments (even if that comes with big expenses). Fundraising doesn’t particularly defund smaller charities in the same niche, it gets some people to donate that might not otherwise donate to anything.

        The next thing you said was that they used rhetoric that dehumanizes autistics. I have read through their website, and find little to support this argument. On http://www.autismspeaks.org/what-autism for example, almost every word is framed in the most positive light. Even the paragraph on intellectual disability was accompanied by a sentence on splinter skills (“ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.”) Say what you want about the language, you can’t argue that it is incorrect.

        As to your theory that Autism Speaks is at fault for discrimination against autistics, this is just silly. Plenty of charities raise money by focusing on the needs of a small population of “disabled.” Calling someone “differently abled” doesn’t change the discrimination, it just makes the general public think you are delusional.

        You conflated the fact that AS uses the language of “disability” with the fact that murder of an autistic is not punished as severely as other murder. These are two separate issues. Ever since humans first started walking upright, the murder of people with dramatic differences has been considered (by some) a lesser crime. In Nazi Germany, it was classified as “euthanasia” and basically legalized. To blame Autism Speaks for this perception is like blaming GLAAD for anti-gay bigotry. The bigotry was an existing condition, and AS is a force for good, not evil.

        Then you wrapped up your argument by insulting me personally. Although I understand the irony, I don’t think it is a good metaphor. Autism Speaks never insulted you personally. They may have unfairly fairly represented your thoughts, but that is not the same thing.

        By insulting me personally, you demean your own argument, and you make yourself look shallow and petty. You turn the discussion away from the real issues and into a trolling contest. It is the lowest form of argument, and actually beneath the level of real argument.

        Let’s try to be better than that.

      • Julian Frost December 22, 2013 at 21:42 #

        I don’t know if this comment will be under my name (Julian Frost) or my wordpress ID (autismjungle). This is just to let you know that we are one and the same.
        In response to Dave’s response to me:

        The next thing you said was that they used rhetoric that dehumanizes autistics. I have read through their website, and find little to support this argument.

        In 2009, Autism Speaks released a video advert entitled “Autism every day”. In that advert, autism was depicted not just as a difficulty, but as a complete and utter tragedy.
        The action call that Autism Speaks put out a few weeks ago did the same thing.
        Blogger Namnezia (who isn’t an autism blogger just ftr) was watching TV with his children when an advert featuring Toni Braxton for Autism Speaks came on. The last sentence of his post?

        Why are they casting these what I imagine are well meaning ads with such a tragic, dehumanizing rhetoric?

        Link: http://scientopia.org/blogs/bridgeblog/2013/12/18/speaking-spookily-about-autism/.

        As to your theory that Autism Speaks is at fault for discrimination against autistics, this is just silly.

        I have listed three examples of Autism Speaks “autism as tragedy” message. That language does dehumanise autistics, even if that isn’t the intention.

        By insulting me personally, you demean your own argument, and you make yourself look shallow and petty. You turn the discussion away from the real issues and into a trolling contest. It is the lowest form of argument, and actually beneath the level of real argument.

        I accused you of being ignorant, insulting and patronising. Your comment just reinforces my belief.

        TL DR: Autism Speaks uses the language of “autism as tragedy”. That language demeans and dehumanises autistics, and that is why we are condemning them.

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    […] dehumanizing rhetoric?” I’ve also been in a fight over at Left Brain Right Brain in these two posts. The bottom line is Autism Speaks uses the rhetoric of “Autism is a tragedy”. […]

  3. How disingenuous can you get? | ischemgeek - January 25, 2014

    […] years (like partnering with an organization denounced at the UN for its torture of disabled people, driving their autistic members to resign in protest of their demonization of autism, and using racist dogwhistles to dismiss their critics, among many many many many others). It is, […]

  4. the color blue | a diary of a mom - June 26, 2014

    […] for days. I could links to posts like this one written by our allies in the disability community or this one by a fellow parent and others by autistic activists that I really hope you’ll read, like this one and this one […]

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