M.J.Carley's reply to "Autism Speaks"
Page 1 of 1 [ 9 posts ]
01 Oct 2009, 10:57 am
I'm still digesting, so I have no comment yet.
Quote:
Re: The Autism Speaks Conundrum
From: Michael John Carley ([email protected])
Sent: Thu 10/01/09
(Please feel free to forward the following to anyone without permission…)
Dear all:
In what wasn’t anything less than a sad setback, Autism Speaks recently released a new video* that most folks on the spectrum, as well as many families, rightfully found very offensive.
* http://www.autismspeaks.org/press/unite ... m_2009.php
Scroll down to see the YouTube video.
For those who remember NYU’s “Ransom Notes” campaign, the messages in this video were very familiar. This nearly 4-minute film ended with a celebration of families, even if it still presented the diagnosis as something to be fought, rather than accommodated or accepted. But the intro to this video, with doomsday music, and a narrator saying things like “I am Autism…If you are happily married, I will make sure your marriage fails. Your money will fall into my hands, and I will bankrupt you.” . . . bordered on hateful.
Especially shaken were GRASP members who were struggling to acquire self-worth in this world.
Throughout their entire history, and as we all know, Autism Speaks has periodically offended the vast majority of people on the spectrum; as well as many families that have chosen to accept and try to accommodate—rather than “fight”—their children’s diagnoses. Their campaigns and language have inundated the public with iconography about what spectrumites can’t do, as opposed to what they can do. And in response to the protests, they have acted as if no one was offended; that people on the spectrum can’t read what’s written about them, or hear what’s being said about them.
Arguably . . . 95% of the hurt done to GRASP members has been caused by the messages and statements Autism Speaks puts out. Only 5% reflects their programs. Autism Speaks has spread the value of an early diagnosis more so than anyone. They have gone after insurance companies that deny coverage to autistic individuals with greater effect than the rest of us. And while the value of the biomedical research they’ve committed themselves to has been questioned (by many who fear that pre-natal testing would be an inevitable result), there are complicated, global benefits to such research, even if, unlike date-based research, it bypasses the average working family with a child on the spectrum.
In our conversations with Autism Speaks Board members, and with their Executive Director, Mark Roithmayr, Autism Speaks has apologized for the video, and they have pulled it (even though the above link still seems to work). We weren’t the only ones they called.
GRASP members should take heart: Some people within Autism Speaks were deeply offended by that video. We appreciate this, but we now must press Autism Speaks for preventive steps, not damage control, so that this never happens again.
As a starting point to that very effort, we ask Autism Speaks to look at how GRASP members have viewed their history; a chronological development littered with interior battles, what we feel to be poor community planning, family squabbles, and power grabs that belie the non-profit world they find themselves in . . . and that hide whatever good people feel they have done.
2004
Around this time, NBC Chairman Bob Wright and his wife Suzanne discovered their grandson had autism. An earlier pediatrician had dispelled their suspicions that the child was autistic, and this inaccurate assessment caused the family to lose months of valuable early intervention time. They were angry.
Armed with mega-money, unprecedented media access, and a star-studded Rolodex, the Wrights declared that they would not be victims, they would fight, and find a cure. They planned a foundation. They talked to scientists, and they sat down with the heads of NAAR (The National Association of Autism Research) and CAN (Cure Autism Now), organizations that would eventually go willingly under the umbrella of Autism Speaks. It was no surprise that peer-run groups were not included because organizations run by people on the spectrum, GRASP especially, had been critical of NAAR and CAN. However, the planners made no effort to talk to parents or service organizations either. Even the largest membership organization, the Autism Society of America (ASA), was shut out of their planning talks. Whispers circulated, true or not, that the Wrights would only talk to autism connections accessible from within their social circle.
They outlined an unprecedented launch for what they named “Autism Speaks:” Two weeks of coverage over all the NBC affiliates.
2005
In February, Autism Speaks stormed out of the gate with a campaign that brought unparalleled attention to the condition, and their launch garnered the support of celebrities and business tycoons to degrees that no prior autism organization had yet seen. Over NBC, MSNBC, and CNBC, a national audience heard a plethora of often contradictory theories about Autism, Asperger’s Syndrome (AS), and Pervasive Developmental Disorder. Airtime was given to TEACCH founder Dr. Gary Mesibov, and to Nobel Prize winner Vernon Smith (who has AS); criticism was levied at insurance companies who deny coverage to children on the spectrum; our improved ability to spot these ever-expanding diagnoses was cited as the reasons for the rise in prevalence numbers, and a representative for the Centers for Disease Control and Prevention (CDC) disputed the idea that Chelation Therapy was a proven method for ridding one of one’s autism. However, the campaign also provided exposure for Chelation advocate, Dr. Kenneth Bock (and his special diets); and to a woman who believed her child’s autism was caused by the tuna she ate during pregnancy. The word “cure” was heard prominently throughout the coverage.
The cumulative effect of the launch was to make autism a greater topic amidst family dinners, water cooler conversations, and everyday life. However, people on the spectrum, as well as many families, were offended by the overwhelmingly negative imagery used to describe the spectrum, and by the constant use of the word “cure.”
Autism Speaks’ launch also angered many parents’ organizations; for in frequently communicating to the media that they had started the organization because “nothing else was out there,” Autism Speaks either knowingly or unknowingly invalidated the efforts of many regional groups that had been slaving away for decades to assist their communities. These parent-run organizations felt greatly left out, and Mrs. Suzanne Wright’s frequent omissions of their years of labor only made things worse.
"What made it even more challenging was discovering how many of our questions had no good answers. Which therapies should our grandson have? Which work best? Where do we go for help? . . . Our family—just like every family in this situation---was left to figure things out for ourselves."
—Interview with Suzanne Wright: Education Leader & Passionate Advocate
By Pola Rosen, Ed.D. Education Update, November 2005
"No one was talking about (autism) . . . No one was talking about this. It wasn’t in the national vocabulary."
—Interview with Suzanne Wright: CNN, April 2, 2008
referring to when her grandson was diagnosed in 2004
These parents orgs also feared that Autism Speaks would suck up much of the slim funding that they had survived on.
With such wide-reaching power, the negative and misinformed aspects of this campaign began causing much dismay for other autism organizations. Under-funded and understaffed non-profits were now having to expend precious administrative time answering the many calls from their constituents who asked (for example) “Did I really give my child this because I ate tuna when pregnant?”
The idea started to spread that Autism Speaks felt no need to collaborate with other organizations, or at the very least, spare them this nuisance. ASA, for instance, was still shut out (more than one Autism Speaks employee privately exclaimed to me, “But they don’t do anything!”). But this begged the question: As the largest autism organization in existence, did Autism Speaks really need to collaborate with anyone else?
GRASP certainly would not have lasted long without partnerships from various parents orgs, or without initially acknowledging the work of prior spectrumites, because we have less than 1/500th of Autism Speaks’ resources. But we needed the peer community’s majority “ok,” and Autism Speaks arguably felt that they did not.
A small journey into the autistic blogging world easily communicated how hated Autism Speaks already was by many people on the spectrum. They saw Autism Speaks as not only trying to eradicate what made them unique as people, but also that through their message, they were adding more and more negative stigma to what was an already over-stigmatized diagnosis. More importantly, they saw Autism Speaks as incapable of change. Naturally, the hurt was doubled when a protest would be lodged, and then unanswered.
How to handle this giant, unpredictable newcomer was a question for every organization, and each chose whatever path they felt was right or best for them. GRASP banked on a strategy of engagement, one born of a past career of mine as a very minor-league diplomat, and one that a powerful official at Autism Speaks welcomed, and that thematically felt right as GRASP was built on very old ideas about community. Lastly, on a personal level, she was someone whom we felt we could trust.
We knew there’d be some negative repercussions within our own ranks, but we believed the positives would outweigh this, and we were right on both counts. The strategy of engagement drew overall applause, but we lost a few of our supporters, people on the spectrum who did not want us “talking with the enemy.”
Another concern of ours, however, was that we did not want to invalidate the seriousness of their experiences the same way we felt they were invalidating the seriousness of ours. Autism Speaks’ stories of head-banging, poop-smearing, and dashed pre-diagnosis dreams for their children were not untrue. Even though no one can know for sure how many non-verbal individuals are quite content in their world, especially if they have good supports and are encouraged to think positively about themselves, the burdens of those families can greatly obstruct the capacity for their happiness. Because of costly or unavailable supportive services, the lives of these families frequently revolve around a myriad of potentially traumatizing circumstances. It is terrifying for someone on the spectrum who is desperately seeking positive self-images to be lectured by the world that his life will be, or is, awful, not to mention a burden on their loved ones; for when added to the already-existing obstacles, such negative imagery doesn’t help. But rather than our being drawn into what we felt was a ridiculous competition of suffering, we made the choice of honoring how circumstances were sometimes traumatic for the parent of the severely-effected child. We did so believing these ideas to be true, but also in the hopes that they would reciprocate.
Autism Speaks raised ten times more money in their first year than all the other autism organizations combined. But by responding to their protesters with silence, the signal sent, whether intended or not, was that that they wouldn’t feel any need to adapt to the hurt feelings of others. Other groups would have to adapt to them.
2006
In the following year, Autism Speaks released their controversial short film, Autism Every Day. The film interviewed parents who were devastated over the intrusion of autism in their lives, the financial costs, and the effect it had on the whole family dynamic. The cries weren’t disingenuous—these families were indeed struggling. But their movie made no attempt to interview parents of similarly-challenged children who had accepted what life had thrown them. Without sugar-coating the very real, perhaps life-long difficulties their child’s diagnosis had presented them. other parents have changed their lives in order to accept their children, such as Kristina Chew (who at the time wrote in the “AutismVox” blog). But by design, no parents of this mindset were included in the movie.
Executive Vice-President, Alison Tepper-Singer, was especially crucified for her comments in the film. Remembering what it was like after her daughter’s diagnosis, she confessed to having thoughts about driving herself and her autistic daughter off the George Washington Bridge one day. Tepper-Singer was our contact at Autism Speaks. And while we interpreted her comments as a confession of the desperation she felt at the time, others took it to mean that she didn’t believe the life of an autistic individual was worth living.
In that same year, we did an exchange of articles with Autism Speaks in 2006.* In this swap of words, we wrote an article for their audience about why we object to the word “cure.” And they, in turn, wrote a piece for our audience on why they use the word. The project wasn’t intended as a debate, but rather a chance to put a human face on all the rhetoric; not to change minds, but to instead soften hearts. It worked, even though many of the angrier constituents on both sides of the fence objected, feeling that such a trade “legitimized” the opinions of the other. The “vaccine-causes-autism” crowd—already upset with Autism Speaks for what they thought were failed promises of vaccine investigation—were beginning to resentfully leave Autism Speaks; and for many, this exchange sealed their departure. And more militant autistic bloggers were now after me (as I’d written our article)—and still are—with words like “house-n _ _ _ _ r” and “curebie suckup.”
* “Articles of Understanding.” See http://www.grasp.org/new_art.htm
After this article exchange, Autism Speaks seemed to use the word “cure” infinitely less, and they had indeed repaired some of the damage to smaller, parent-run organizations through small grants and sponsorships.
2007
Because of the earlier missteps, others in the autism world believed that Autism Speaks hadn’t done much external homework on the spectrum’s diversity. However, as the world would learn in this year, they hadn’t done their internal homework either. A family disagreement between founders the Wrights and their daughter Katie (the mother of the child who in effect, started Autism Speaks) was starting to take on embarrassing proportions that fueled their critics.
Katie believed that her son Christian had gotten his autism from vaccines. Her parents, acting on advice from the scientific community, didn’t. So Katie began blogging her disagreements with Autism Speaks over the “Age of Autism” website; and parents responded to her through press releases. Finally, their embarrassing squabbles were displayed on the front cover of the New York Times.*
* “Autism Debate Strains a Family and Its Charity” By Jane Gross and Stephanie Strom. New York Times,
June 18, 2007
2008
A 14-year old autistic boy put a satirical version of Autism Speaks’ website (called “NT [Neurotypical] Speaks”) on the web, and Autism Speaks reportedly sent their lawyers on a full-court threat designed to intimidate the autistic youngster and his family. One story* quoting an unconfirmed source (the “Whose Planet Is It Anyway?” blog) wrote:
They sent (the youngster) a letter containing a ridiculous demand for $90,000 for "funds lost." Then they followed that up by claiming that they were willing to settle the matter without receiving any payment because of (the youngster)’s age, provided the website was taken down. They also browbeat (the youngster) into destroying the source code and giving the domain name to Autism Speaks.
When the author contacted Autism Speaks for their response to the above, their legal counsel responded:
Autism Speaks, like every organization, is obliged to protect its name and trademark. The individual who used the Autism Speaks name and logo without permission was asked to desist, and he agreed to do so.
* “When Is a Humorous Site Not So Funny? Autism Speaks Has Its Say” by Lisa Jo Rudy, About.Com.
http://autism.about.com/b/2008/01/22/wh ... ts-say.htm
Needless to say, this didn’t improve our members’ opinions of Autism Speaks.
2009
While no one knows for sure why the following transpired, Autism Speaks now began moving towards vaccine theory belief. Through thinly-disguised comments of “we need to know more” they began to send signals that they would fund research into the possible vaccine-autism connection. On her blog, Katie Wright had recently called for the firings of both Tepper-Singer, and science advisor Andy Shih, and so the feeling, right or wrong, was that the Wrights were going to steer Autism Speaks in this direction so as to make peace with their daughter. In January, Tepper-Singer resigned from Autism Speaks over this issue. Bob Wright called Singer’s resignation “disappointing and sad”* and in an interview immediately following, Singer responded with the following:
In general, I disagree with a policy that says, "Despite what this study shows, more studies should be done." At some point, you have to say, "This question has been asked and answered and it's time to move on." We need to be able to say, "Yes, we are now satisfied that the earth is round." †
* † “This Question has been Asked and Answered,” by Claudia Kalb. Newsweek Magazine; January 16, 2009.
http://www.newsweek.com/related.aspx?su ... ism+Speaks
Dr. Eric London soon followed Tepper-Singer. London, a co-founder with his wife of NAAR, was equally pointed and vocal about his opposition to Autism Speaks becoming a vaccine theory organization. And since NAAR was one of those organizations that became a part of Autism Speaks, they suffered another hit to their credibility. It remains to be seen whether more members of Autism Speaks’ Scientific Council will follow, as down the road, no scientist’s reputation will likely survive vaccine theory support.
Why? Because the vaccine scare causes families not to vaccinate, which causes rises in preventable diseases. As early as 2005, the Michigan University Journal of Law Reform* reported: “. . . outbreaks of measles, whooping cough, mumps, rubella and diphtheria are reoccurring, costing hundreds of lives and hospitalizing thousands more.”
* Winter, 2004 edition.
After Tepper-Singer’s departure, I assumed that GRASP’s attempts to engage Autism Speaks in dialogue would be over. Without her, relations were back to nothing more than polite handshakes, and promises to talk more at a later time.
***
The average Autism Speaks employee might view this chronology and think “But that says nothing about all the good we’ve done!” This might be an accurate response. But what Autism Speaks has to understand is that GRASP’s members derive little or no benefit from their programs, and lots of negative iconography about who they are through Autism Speaks’ TV appearances, videos, films, and words. This is often all we see—A consistent pattern of unwillingness to accommodate, or validate, the feelings of others.
Summary
The very first image shown in their 2005 launch was of one parent, a father. While immensely sad music played in the background (Arvo Pärt’s Summa), the father opened with the lines, “To me it was like this little body just walking around without a soul.” That same week, I played this segment for some of GRASP’s autistic students in the NYC public schools, and asked for their opinions. They said it made them feel bad. They said they thought they had souls.
I have never met Autism Speaks Founders Bob and Suzanne Wright, and wouldn’t pretend to know them. But from a small distance their actions speak volumes to our members. Why, for starters, did they suggest “nothing was out there,” when in their own back yard was one of the best systems for parent support in the country (Long Island’s AHANY)? One can’t help think how much AHANY’s support group would have helped them process the very real grieving process they were going through.
Judging by her on-camera persona, Mrs. Wright seems to think of herself as a fighter; and I would agree. Fueled partly by a grandmother’s love, she engages in what she believes is that fight, utilizing methods like alarmist rhetoric (that a cure is possible* despite knowing how our members feel about the word), or scare tactics (visible through her use of the word “epidemic”†, and through the occasional citing of a “75-80% divorce rate” [for parents of autistic children] that has been questioned, and never verified).
* 10 Myths About Autism, ABC News; http://abcnews.go.com/Health/ColdandFlu ... 162&page=2 “Myth: Autism Can be Cured”
† 10 Myths About Autism, ABC News; http://abcnews.go.com/Health/ColdandFlu ... 162&page=1 “Myth: There is an Autism Epidemic”
Mrs. Wright has been criticized for the things she’s said. But it’s very cynical to suggest that her omissions were premeditated insults when you examine her very down-to-earth style of presentation. The problem seems to lie more in how closed off she and her husband made themselves to the rest of the autism community.
In the 1960’s, Hospice Care revolutionary Elizabeth Kübler-Ross identified the Five Stages of Grieving (in order of appearance, they are (1) Denial (2) Anger (3) Bargaining (4) Depression (5) Acceptance). The 1st and 2nd stages are periods that are emotionally real, but where no wisdom comes from. And too often, Autism Speaks seems consciously unwilling to budge from that second step, feeling it the best place from which to pursue that “fight.” GRASP feels that this inability to move on, and emotionally grow, has plagued the entire autism community.
The Wrights are people of means, and one sad rule the rest of us have to absorb is that the fears of others being after their money…are usually true. Part of why it has been so easy to resent them is because many people want what they have.
Maybe we would resent them less if we started to look at all that they don’t have.
Now, I haven’t met the Wrights, but I have met their grandson. He is significantly challenged, and he is often in physical pain with the gastrointestinal issues that often plague significantly-challenged individuals. One wishes that pain simply not exist, especially in a child. It doesn’t make him happy. It’s hard to watch.
Granted, I did not see him when he was terrified, overtly confused, or under tremendous sensory assault; but this young man is also somewhat impressive. He has a special chair that he sits in when he wants to calm down, and he knows how to relieve his gastrointestinal pressure somewhat by lying flat on his belly. His family has to be concerned about what to do with tougher moments as he gets bigger, and how to provide a life for him that he finds happy; but he is getting fantastic care, and according to his Mom, he has greatly improved, and will likely continue to do so. If looked at in relative terms, he is learning to cope.
Too often in the autism world, we use communication as the measuring stick of happiness, and this approach unknowingly contributes to the aforementioned “competition of suffering.” Under this notion we would have to conclude that a significantly challenged individual who:
• has a decent place to live and eats a decent diet
• has a job, say, stocking shelves, and feels purpose herein
• is able to pursue his special interests when not working
• has whatever gastrointestinal issues (that may or may not be present) under control
• (forgive me) knows how to, and when and where it is appropriate to masturbate
• operates and lives amidst conditions that accommodate his sensory needs
…is less happy than an individual with AS who:
• tests off the charts
• has remarkable verbal skills
• yet is looked upon as a failure because his social skills or physical traits prevent him from employment or intimate partnership
The big picture doesn’t tell us that the more challenged individual is the happier of the two, it tells us that such comparisons aren’t worth the time spent in drawing them. The spectrum doesn’t move from low expectations to high expectations. Until the day things improve for all, our demographics move from low, to unmet expectations.
There are many ways in which trust, or a lack of it, affects all of us in this autism world. There’s the trust that no one willingly wants to take away funding for a significantly-challenged child simply because they want funding for a less-challenged adult who needs job training. There’s the trust that if your child’s severities do not hold a monopoly-like ownership on “what autism looks like” that you still might get what you need. There’s the trust that people who use the word “cure” aren’t trying to “exterminate” anyone. There’s the trust that if you show your face and come out against a vaccine controversy, that no one will shoot you. There’s also the trust that everything will be ok once the DSM-V comes out (2012?) and changes all the terms yet again.
But collectively, we don’t yet have this trust. The condition of the heart seems to be playing just as big a role as neurology.
Given the potential of the aforementioned resources and Rolodex, our hope is to convince Autism Speaks that less-challenged individuals simply have problems that are incomparably different. We want them to see the senselessness when either side encourages that “competition of suffering.” We want them to blame our collective infancy at understanding the spectrum, and not simply demonize the diagnosis. We want them to blame their neighbors reactions to their child’s behavioral challenges a little more, and blame the challenges a little less. We want them to know the joys of real community, rather than just their (admittedly powerful) camps. We want them to feel included, and not threatened, by those outside their walls. We want them to feel the sense of purpose, and goodness, that comes from putting forth scientifically sound, emotionally-healthy material.
We are grateful they pulled “I Am Autism.” The individuals who run Autism Speaks have vastly dissenting opinions about that video, and dare I say it, there are some decent people there. But whether they pulled the film out of sincerity, or strategy—as an entity—remains to be seen.
The ball’s in their court.
Yours, y’all,
mjc, and the Board of GRASP
GRASP The Global and Regional Asperger Syndrome Partnership, Inc. 666 Broadway, Suite 830 New York, NY 10012 p + f = 1.888.474.7277 www.grasp.org
From: Michael John Carley ([email protected])
Sent: Thu 10/01/09
(Please feel free to forward the following to anyone without permission…)
Dear all:
In what wasn’t anything less than a sad setback, Autism Speaks recently released a new video* that most folks on the spectrum, as well as many families, rightfully found very offensive.
* http://www.autismspeaks.org/press/unite ... m_2009.php
Scroll down to see the YouTube video.
For those who remember NYU’s “Ransom Notes” campaign, the messages in this video were very familiar. This nearly 4-minute film ended with a celebration of families, even if it still presented the diagnosis as something to be fought, rather than accommodated or accepted. But the intro to this video, with doomsday music, and a narrator saying things like “I am Autism…If you are happily married, I will make sure your marriage fails. Your money will fall into my hands, and I will bankrupt you.” . . . bordered on hateful.
Especially shaken were GRASP members who were struggling to acquire self-worth in this world.
Throughout their entire history, and as we all know, Autism Speaks has periodically offended the vast majority of people on the spectrum; as well as many families that have chosen to accept and try to accommodate—rather than “fight”—their children’s diagnoses. Their campaigns and language have inundated the public with iconography about what spectrumites can’t do, as opposed to what they can do. And in response to the protests, they have acted as if no one was offended; that people on the spectrum can’t read what’s written about them, or hear what’s being said about them.
Arguably . . . 95% of the hurt done to GRASP members has been caused by the messages and statements Autism Speaks puts out. Only 5% reflects their programs. Autism Speaks has spread the value of an early diagnosis more so than anyone. They have gone after insurance companies that deny coverage to autistic individuals with greater effect than the rest of us. And while the value of the biomedical research they’ve committed themselves to has been questioned (by many who fear that pre-natal testing would be an inevitable result), there are complicated, global benefits to such research, even if, unlike date-based research, it bypasses the average working family with a child on the spectrum.
In our conversations with Autism Speaks Board members, and with their Executive Director, Mark Roithmayr, Autism Speaks has apologized for the video, and they have pulled it (even though the above link still seems to work). We weren’t the only ones they called.
GRASP members should take heart: Some people within Autism Speaks were deeply offended by that video. We appreciate this, but we now must press Autism Speaks for preventive steps, not damage control, so that this never happens again.
As a starting point to that very effort, we ask Autism Speaks to look at how GRASP members have viewed their history; a chronological development littered with interior battles, what we feel to be poor community planning, family squabbles, and power grabs that belie the non-profit world they find themselves in . . . and that hide whatever good people feel they have done.
2004
Around this time, NBC Chairman Bob Wright and his wife Suzanne discovered their grandson had autism. An earlier pediatrician had dispelled their suspicions that the child was autistic, and this inaccurate assessment caused the family to lose months of valuable early intervention time. They were angry.
Armed with mega-money, unprecedented media access, and a star-studded Rolodex, the Wrights declared that they would not be victims, they would fight, and find a cure. They planned a foundation. They talked to scientists, and they sat down with the heads of NAAR (The National Association of Autism Research) and CAN (Cure Autism Now), organizations that would eventually go willingly under the umbrella of Autism Speaks. It was no surprise that peer-run groups were not included because organizations run by people on the spectrum, GRASP especially, had been critical of NAAR and CAN. However, the planners made no effort to talk to parents or service organizations either. Even the largest membership organization, the Autism Society of America (ASA), was shut out of their planning talks. Whispers circulated, true or not, that the Wrights would only talk to autism connections accessible from within their social circle.
They outlined an unprecedented launch for what they named “Autism Speaks:” Two weeks of coverage over all the NBC affiliates.
2005
In February, Autism Speaks stormed out of the gate with a campaign that brought unparalleled attention to the condition, and their launch garnered the support of celebrities and business tycoons to degrees that no prior autism organization had yet seen. Over NBC, MSNBC, and CNBC, a national audience heard a plethora of often contradictory theories about Autism, Asperger’s Syndrome (AS), and Pervasive Developmental Disorder. Airtime was given to TEACCH founder Dr. Gary Mesibov, and to Nobel Prize winner Vernon Smith (who has AS); criticism was levied at insurance companies who deny coverage to children on the spectrum; our improved ability to spot these ever-expanding diagnoses was cited as the reasons for the rise in prevalence numbers, and a representative for the Centers for Disease Control and Prevention (CDC) disputed the idea that Chelation Therapy was a proven method for ridding one of one’s autism. However, the campaign also provided exposure for Chelation advocate, Dr. Kenneth Bock (and his special diets); and to a woman who believed her child’s autism was caused by the tuna she ate during pregnancy. The word “cure” was heard prominently throughout the coverage.
The cumulative effect of the launch was to make autism a greater topic amidst family dinners, water cooler conversations, and everyday life. However, people on the spectrum, as well as many families, were offended by the overwhelmingly negative imagery used to describe the spectrum, and by the constant use of the word “cure.”
Autism Speaks’ launch also angered many parents’ organizations; for in frequently communicating to the media that they had started the organization because “nothing else was out there,” Autism Speaks either knowingly or unknowingly invalidated the efforts of many regional groups that had been slaving away for decades to assist their communities. These parent-run organizations felt greatly left out, and Mrs. Suzanne Wright’s frequent omissions of their years of labor only made things worse.
"What made it even more challenging was discovering how many of our questions had no good answers. Which therapies should our grandson have? Which work best? Where do we go for help? . . . Our family—just like every family in this situation---was left to figure things out for ourselves."
—Interview with Suzanne Wright: Education Leader & Passionate Advocate
By Pola Rosen, Ed.D. Education Update, November 2005
"No one was talking about (autism) . . . No one was talking about this. It wasn’t in the national vocabulary."
—Interview with Suzanne Wright: CNN, April 2, 2008
referring to when her grandson was diagnosed in 2004
These parents orgs also feared that Autism Speaks would suck up much of the slim funding that they had survived on.
With such wide-reaching power, the negative and misinformed aspects of this campaign began causing much dismay for other autism organizations. Under-funded and understaffed non-profits were now having to expend precious administrative time answering the many calls from their constituents who asked (for example) “Did I really give my child this because I ate tuna when pregnant?”
The idea started to spread that Autism Speaks felt no need to collaborate with other organizations, or at the very least, spare them this nuisance. ASA, for instance, was still shut out (more than one Autism Speaks employee privately exclaimed to me, “But they don’t do anything!”). But this begged the question: As the largest autism organization in existence, did Autism Speaks really need to collaborate with anyone else?
GRASP certainly would not have lasted long without partnerships from various parents orgs, or without initially acknowledging the work of prior spectrumites, because we have less than 1/500th of Autism Speaks’ resources. But we needed the peer community’s majority “ok,” and Autism Speaks arguably felt that they did not.
A small journey into the autistic blogging world easily communicated how hated Autism Speaks already was by many people on the spectrum. They saw Autism Speaks as not only trying to eradicate what made them unique as people, but also that through their message, they were adding more and more negative stigma to what was an already over-stigmatized diagnosis. More importantly, they saw Autism Speaks as incapable of change. Naturally, the hurt was doubled when a protest would be lodged, and then unanswered.
How to handle this giant, unpredictable newcomer was a question for every organization, and each chose whatever path they felt was right or best for them. GRASP banked on a strategy of engagement, one born of a past career of mine as a very minor-league diplomat, and one that a powerful official at Autism Speaks welcomed, and that thematically felt right as GRASP was built on very old ideas about community. Lastly, on a personal level, she was someone whom we felt we could trust.
We knew there’d be some negative repercussions within our own ranks, but we believed the positives would outweigh this, and we were right on both counts. The strategy of engagement drew overall applause, but we lost a few of our supporters, people on the spectrum who did not want us “talking with the enemy.”
Another concern of ours, however, was that we did not want to invalidate the seriousness of their experiences the same way we felt they were invalidating the seriousness of ours. Autism Speaks’ stories of head-banging, poop-smearing, and dashed pre-diagnosis dreams for their children were not untrue. Even though no one can know for sure how many non-verbal individuals are quite content in their world, especially if they have good supports and are encouraged to think positively about themselves, the burdens of those families can greatly obstruct the capacity for their happiness. Because of costly or unavailable supportive services, the lives of these families frequently revolve around a myriad of potentially traumatizing circumstances. It is terrifying for someone on the spectrum who is desperately seeking positive self-images to be lectured by the world that his life will be, or is, awful, not to mention a burden on their loved ones; for when added to the already-existing obstacles, such negative imagery doesn’t help. But rather than our being drawn into what we felt was a ridiculous competition of suffering, we made the choice of honoring how circumstances were sometimes traumatic for the parent of the severely-effected child. We did so believing these ideas to be true, but also in the hopes that they would reciprocate.
Autism Speaks raised ten times more money in their first year than all the other autism organizations combined. But by responding to their protesters with silence, the signal sent, whether intended or not, was that that they wouldn’t feel any need to adapt to the hurt feelings of others. Other groups would have to adapt to them.
2006
In the following year, Autism Speaks released their controversial short film, Autism Every Day. The film interviewed parents who were devastated over the intrusion of autism in their lives, the financial costs, and the effect it had on the whole family dynamic. The cries weren’t disingenuous—these families were indeed struggling. But their movie made no attempt to interview parents of similarly-challenged children who had accepted what life had thrown them. Without sugar-coating the very real, perhaps life-long difficulties their child’s diagnosis had presented them. other parents have changed their lives in order to accept their children, such as Kristina Chew (who at the time wrote in the “AutismVox” blog). But by design, no parents of this mindset were included in the movie.
Executive Vice-President, Alison Tepper-Singer, was especially crucified for her comments in the film. Remembering what it was like after her daughter’s diagnosis, she confessed to having thoughts about driving herself and her autistic daughter off the George Washington Bridge one day. Tepper-Singer was our contact at Autism Speaks. And while we interpreted her comments as a confession of the desperation she felt at the time, others took it to mean that she didn’t believe the life of an autistic individual was worth living.
In that same year, we did an exchange of articles with Autism Speaks in 2006.* In this swap of words, we wrote an article for their audience about why we object to the word “cure.” And they, in turn, wrote a piece for our audience on why they use the word. The project wasn’t intended as a debate, but rather a chance to put a human face on all the rhetoric; not to change minds, but to instead soften hearts. It worked, even though many of the angrier constituents on both sides of the fence objected, feeling that such a trade “legitimized” the opinions of the other. The “vaccine-causes-autism” crowd—already upset with Autism Speaks for what they thought were failed promises of vaccine investigation—were beginning to resentfully leave Autism Speaks; and for many, this exchange sealed their departure. And more militant autistic bloggers were now after me (as I’d written our article)—and still are—with words like “house-n _ _ _ _ r” and “curebie suckup.”
* “Articles of Understanding.” See http://www.grasp.org/new_art.htm
After this article exchange, Autism Speaks seemed to use the word “cure” infinitely less, and they had indeed repaired some of the damage to smaller, parent-run organizations through small grants and sponsorships.
2007
Because of the earlier missteps, others in the autism world believed that Autism Speaks hadn’t done much external homework on the spectrum’s diversity. However, as the world would learn in this year, they hadn’t done their internal homework either. A family disagreement between founders the Wrights and their daughter Katie (the mother of the child who in effect, started Autism Speaks) was starting to take on embarrassing proportions that fueled their critics.
Katie believed that her son Christian had gotten his autism from vaccines. Her parents, acting on advice from the scientific community, didn’t. So Katie began blogging her disagreements with Autism Speaks over the “Age of Autism” website; and parents responded to her through press releases. Finally, their embarrassing squabbles were displayed on the front cover of the New York Times.*
* “Autism Debate Strains a Family and Its Charity” By Jane Gross and Stephanie Strom. New York Times,
June 18, 2007
2008
A 14-year old autistic boy put a satirical version of Autism Speaks’ website (called “NT [Neurotypical] Speaks”) on the web, and Autism Speaks reportedly sent their lawyers on a full-court threat designed to intimidate the autistic youngster and his family. One story* quoting an unconfirmed source (the “Whose Planet Is It Anyway?” blog) wrote:
They sent (the youngster) a letter containing a ridiculous demand for $90,000 for "funds lost." Then they followed that up by claiming that they were willing to settle the matter without receiving any payment because of (the youngster)’s age, provided the website was taken down. They also browbeat (the youngster) into destroying the source code and giving the domain name to Autism Speaks.
When the author contacted Autism Speaks for their response to the above, their legal counsel responded:
Autism Speaks, like every organization, is obliged to protect its name and trademark. The individual who used the Autism Speaks name and logo without permission was asked to desist, and he agreed to do so.
* “When Is a Humorous Site Not So Funny? Autism Speaks Has Its Say” by Lisa Jo Rudy, About.Com.
http://autism.about.com/b/2008/01/22/wh ... ts-say.htm
Needless to say, this didn’t improve our members’ opinions of Autism Speaks.
2009
While no one knows for sure why the following transpired, Autism Speaks now began moving towards vaccine theory belief. Through thinly-disguised comments of “we need to know more” they began to send signals that they would fund research into the possible vaccine-autism connection. On her blog, Katie Wright had recently called for the firings of both Tepper-Singer, and science advisor Andy Shih, and so the feeling, right or wrong, was that the Wrights were going to steer Autism Speaks in this direction so as to make peace with their daughter. In January, Tepper-Singer resigned from Autism Speaks over this issue. Bob Wright called Singer’s resignation “disappointing and sad”* and in an interview immediately following, Singer responded with the following:
In general, I disagree with a policy that says, "Despite what this study shows, more studies should be done." At some point, you have to say, "This question has been asked and answered and it's time to move on." We need to be able to say, "Yes, we are now satisfied that the earth is round." †
* † “This Question has been Asked and Answered,” by Claudia Kalb. Newsweek Magazine; January 16, 2009.
http://www.newsweek.com/related.aspx?su ... ism+Speaks
Dr. Eric London soon followed Tepper-Singer. London, a co-founder with his wife of NAAR, was equally pointed and vocal about his opposition to Autism Speaks becoming a vaccine theory organization. And since NAAR was one of those organizations that became a part of Autism Speaks, they suffered another hit to their credibility. It remains to be seen whether more members of Autism Speaks’ Scientific Council will follow, as down the road, no scientist’s reputation will likely survive vaccine theory support.
Why? Because the vaccine scare causes families not to vaccinate, which causes rises in preventable diseases. As early as 2005, the Michigan University Journal of Law Reform* reported: “. . . outbreaks of measles, whooping cough, mumps, rubella and diphtheria are reoccurring, costing hundreds of lives and hospitalizing thousands more.”
* Winter, 2004 edition.
After Tepper-Singer’s departure, I assumed that GRASP’s attempts to engage Autism Speaks in dialogue would be over. Without her, relations were back to nothing more than polite handshakes, and promises to talk more at a later time.
***
The average Autism Speaks employee might view this chronology and think “But that says nothing about all the good we’ve done!” This might be an accurate response. But what Autism Speaks has to understand is that GRASP’s members derive little or no benefit from their programs, and lots of negative iconography about who they are through Autism Speaks’ TV appearances, videos, films, and words. This is often all we see—A consistent pattern of unwillingness to accommodate, or validate, the feelings of others.
Summary
The very first image shown in their 2005 launch was of one parent, a father. While immensely sad music played in the background (Arvo Pärt’s Summa), the father opened with the lines, “To me it was like this little body just walking around without a soul.” That same week, I played this segment for some of GRASP’s autistic students in the NYC public schools, and asked for their opinions. They said it made them feel bad. They said they thought they had souls.
I have never met Autism Speaks Founders Bob and Suzanne Wright, and wouldn’t pretend to know them. But from a small distance their actions speak volumes to our members. Why, for starters, did they suggest “nothing was out there,” when in their own back yard was one of the best systems for parent support in the country (Long Island’s AHANY)? One can’t help think how much AHANY’s support group would have helped them process the very real grieving process they were going through.
Judging by her on-camera persona, Mrs. Wright seems to think of herself as a fighter; and I would agree. Fueled partly by a grandmother’s love, she engages in what she believes is that fight, utilizing methods like alarmist rhetoric (that a cure is possible* despite knowing how our members feel about the word), or scare tactics (visible through her use of the word “epidemic”†, and through the occasional citing of a “75-80% divorce rate” [for parents of autistic children] that has been questioned, and never verified).
* 10 Myths About Autism, ABC News; http://abcnews.go.com/Health/ColdandFlu ... 162&page=2 “Myth: Autism Can be Cured”
† 10 Myths About Autism, ABC News; http://abcnews.go.com/Health/ColdandFlu ... 162&page=1 “Myth: There is an Autism Epidemic”
Mrs. Wright has been criticized for the things she’s said. But it’s very cynical to suggest that her omissions were premeditated insults when you examine her very down-to-earth style of presentation. The problem seems to lie more in how closed off she and her husband made themselves to the rest of the autism community.
In the 1960’s, Hospice Care revolutionary Elizabeth Kübler-Ross identified the Five Stages of Grieving (in order of appearance, they are (1) Denial (2) Anger (3) Bargaining (4) Depression (5) Acceptance). The 1st and 2nd stages are periods that are emotionally real, but where no wisdom comes from. And too often, Autism Speaks seems consciously unwilling to budge from that second step, feeling it the best place from which to pursue that “fight.” GRASP feels that this inability to move on, and emotionally grow, has plagued the entire autism community.
The Wrights are people of means, and one sad rule the rest of us have to absorb is that the fears of others being after their money…are usually true. Part of why it has been so easy to resent them is because many people want what they have.
Maybe we would resent them less if we started to look at all that they don’t have.
Now, I haven’t met the Wrights, but I have met their grandson. He is significantly challenged, and he is often in physical pain with the gastrointestinal issues that often plague significantly-challenged individuals. One wishes that pain simply not exist, especially in a child. It doesn’t make him happy. It’s hard to watch.
Granted, I did not see him when he was terrified, overtly confused, or under tremendous sensory assault; but this young man is also somewhat impressive. He has a special chair that he sits in when he wants to calm down, and he knows how to relieve his gastrointestinal pressure somewhat by lying flat on his belly. His family has to be concerned about what to do with tougher moments as he gets bigger, and how to provide a life for him that he finds happy; but he is getting fantastic care, and according to his Mom, he has greatly improved, and will likely continue to do so. If looked at in relative terms, he is learning to cope.
Too often in the autism world, we use communication as the measuring stick of happiness, and this approach unknowingly contributes to the aforementioned “competition of suffering.” Under this notion we would have to conclude that a significantly challenged individual who:
• has a decent place to live and eats a decent diet
• has a job, say, stocking shelves, and feels purpose herein
• is able to pursue his special interests when not working
• has whatever gastrointestinal issues (that may or may not be present) under control
• (forgive me) knows how to, and when and where it is appropriate to masturbate
• operates and lives amidst conditions that accommodate his sensory needs
…is less happy than an individual with AS who:
• tests off the charts
• has remarkable verbal skills
• yet is looked upon as a failure because his social skills or physical traits prevent him from employment or intimate partnership
The big picture doesn’t tell us that the more challenged individual is the happier of the two, it tells us that such comparisons aren’t worth the time spent in drawing them. The spectrum doesn’t move from low expectations to high expectations. Until the day things improve for all, our demographics move from low, to unmet expectations.
There are many ways in which trust, or a lack of it, affects all of us in this autism world. There’s the trust that no one willingly wants to take away funding for a significantly-challenged child simply because they want funding for a less-challenged adult who needs job training. There’s the trust that if your child’s severities do not hold a monopoly-like ownership on “what autism looks like” that you still might get what you need. There’s the trust that people who use the word “cure” aren’t trying to “exterminate” anyone. There’s the trust that if you show your face and come out against a vaccine controversy, that no one will shoot you. There’s also the trust that everything will be ok once the DSM-V comes out (2012?) and changes all the terms yet again.
But collectively, we don’t yet have this trust. The condition of the heart seems to be playing just as big a role as neurology.
Given the potential of the aforementioned resources and Rolodex, our hope is to convince Autism Speaks that less-challenged individuals simply have problems that are incomparably different. We want them to see the senselessness when either side encourages that “competition of suffering.” We want them to blame our collective infancy at understanding the spectrum, and not simply demonize the diagnosis. We want them to blame their neighbors reactions to their child’s behavioral challenges a little more, and blame the challenges a little less. We want them to know the joys of real community, rather than just their (admittedly powerful) camps. We want them to feel included, and not threatened, by those outside their walls. We want them to feel the sense of purpose, and goodness, that comes from putting forth scientifically sound, emotionally-healthy material.
We are grateful they pulled “I Am Autism.” The individuals who run Autism Speaks have vastly dissenting opinions about that video, and dare I say it, there are some decent people there. But whether they pulled the film out of sincerity, or strategy—as an entity—remains to be seen.
The ball’s in their court.
Yours, y’all,
mjc, and the Board of GRASP
GRASP The Global and Regional Asperger Syndrome Partnership, Inc. 666 Broadway, Suite 830 New York, NY 10012 p + f = 1.888.474.7277 www.grasp.org
_________________
Occupy Everything!
03 Oct 2009, 3:20 pm
Where did you find that Tahitiii? I couldn't find it on the GRASP website.
I liked this part:
M.J.Carley wrote:
GRASP banked on a strategy of engagement, one born of a past career of mine as a very minor-league diplomat, and one that a powerful official at Autism Speaks welcomed, and that thematically felt right as GRASP was built on very old ideas about community
This is so much better than a policy of confrontation that organizations like ASAN have.
_________________
NobelCynic (on WP)
My given name is Kenneth
03 Oct 2009, 3:49 pm
I got that from being on the GRASP e-mail list.
NobelCynic wrote:
This is so much better than a policy of confrontation that organizations like ASAN have.
I don't see it that way. It takes all kinds to make a movement. Speak softly but carry a big stick...
Diplomacy has its place, but with people who have no respect for me at all, I've never gotten anything by asking nicely. With people like "Autism Speaks," you need at least some kind of a veiled threat. Something.
I'm still looking for an Aspie version of Malcolm X. Someone who can get seriously pissed-off but remain articulate, rather than shutting down, like me. Ari isn't quite that in-your-face, but I guess he'll have to do.
03 Oct 2009, 4:04 pm
I also get e-mails from Ari's connections.
Quote:
Re: Letter in Response to Autism Speaks' Exploitative Practices
From: on behalf of Ari ([email protected])
Sent: Sat 10/03/09 1:05 PM
To: a local aspergers meetup group
The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization's latest offensive and damaging Public Service Announcement, "I am Autism". If you are an organization that would like to sign on to the letter, please e-mail ASAN at [email protected] before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at [email protected]
Thank you for your support and please feel free to distribute for additional signatories.
To the Sponsors, Donors and Supporters of Autism Speaks:
We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks' recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fund-raising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks? new ?I am Autism? campaign which states, "I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."
Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.
We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.
Autism Speaks uses damaging and offensive fund-raising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks' unethical fund-raising tactics are not limited to the new "I am Autism" video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fund-raising and awareness efforts, going back to their "Autism Every Day" film in 2005. Indeed, throughout Autism Speaks' fund-raising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.
Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks' budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks' research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.
Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks' public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks' governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.
Contrary to the "I am Autism" video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.
We are Autism's true voice: Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen; we are right here. Our lives may be difficult, but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.
Regards,
National:
The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2
International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom
Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
[email protected]
------------------------------------------------
Take a look at our innovative new Public Service Announcement produced with the Dan Marino Foundation at http://www.nomyths.org
If you like what we do, help support the Autistic Self Advocacy Network by making a donation at: https://www.change.org/donation/create? ... _id=211198
From: on behalf of Ari ([email protected])
Sent: Sat 10/03/09 1:05 PM
To: a local aspergers meetup group
The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization's latest offensive and damaging Public Service Announcement, "I am Autism". If you are an organization that would like to sign on to the letter, please e-mail ASAN at [email protected] before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at [email protected]
Thank you for your support and please feel free to distribute for additional signatories.
To the Sponsors, Donors and Supporters of Autism Speaks:
We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks' recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fund-raising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks? new ?I am Autism? campaign which states, "I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."
Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.
We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.
Autism Speaks uses damaging and offensive fund-raising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks' unethical fund-raising tactics are not limited to the new "I am Autism" video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fund-raising and awareness efforts, going back to their "Autism Every Day" film in 2005. Indeed, throughout Autism Speaks' fund-raising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.
Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks' budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks' research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.
Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks' public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks' governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.
Contrary to the "I am Autism" video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.
We are Autism's true voice: Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen; we are right here. Our lives may be difficult, but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.
Regards,
National:
The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2
International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom
Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
[email protected]
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Take a look at our innovative new Public Service Announcement produced with the Dan Marino Foundation at http://www.nomyths.org
If you like what we do, help support the Autistic Self Advocacy Network by making a donation at: https://www.change.org/donation/create? ... _id=211198
_________________
Occupy Everything!
04 Oct 2009, 7:00 am
Tahitiii wrote:
I'm still looking for an Aspie version of Malcolm X
I would perfer an aspie version of Martin Luther King.As Carley pointed out in his letter, some members of Autism Speaks were offended by that video and they may pull their support, however I doubt that any will do so because of an appeal from Ari Ne'eman. I am no fan of Autism Speaks and they are not going to get any of my money, but that does not mean that I will stop listening to Bruce Springsteen music if he gives them any of his or stop watching football games because the NFL supports them.
To the best of my knowledge Autism Speaks never claimed to speak for autistic people; they claim to speak for autism itself as though they are giving voice to what they consider to be a disease. I agree with what Alex has written on the bottom of every page on this site: Asperger's (and by extention, the rest of the spectrum) is not a disease, I disagree with Ari who calls it a disability; it is offically classified as a disorder and I don't even like calling it that, I perfer anomaly.
on behalf of Ari wrote:
Very little money donated to Autism Speaks goes toward helping Autistic people and families
The same could be said of ASAN. Other than protesting every Autism Speaks fundraiser they can get people to, all I see them doing is advocating that the government should do it. This may be playing into Autism Speaks hands for even people who don't have autistic children might fear their taxes being raised in order to help those who do.
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NobelCynic (on WP)
My given name is Kenneth
06 Oct 2009, 6:19 pm
This is infuriating, I can't stand the way NT's treat us. So much talk of disease, this isn't a disease it's not very different from being normal. The hate that slithers around the world is part of the cycle of life; it's actually quite refreshing. That smells like....Brimstone.
06 May 2012, 2:50 am
A very interesting history. My diagnosis, at 43, has left me at a disadvantage when it comes to knowing groups that support autism. I'm aspie, and am strong on patterns, so when I started to see Autism Speaks lauding Eric Cantor of Virgina, a million warning bells went off in my head.
I'm glad you have trust that things will be alright when the DSM 5 comes out. I've made it this far only through adopting a very cautious and cynical attitude toward the APA, which diagnosed me with most of the things in the DSM IV before a team of real neurodiagnosticians and a specialist in Asperger Syndrome took a look at me.
I've been following their proposed guidelines pretty closely, and they have been left extremely vague. I suspect, based on the number generated by their own studies, that they just want to narrow the diagnosis to take pressure off of the medical and services side of things. Imagine, you're only ASD if you're blond with a mole on your cheek. That sort of redefinition. Since the current method of testing is plenty accurate, and is time-tested, coming with terms that the general public has already heard of, at least, this whole thing makes me very suspicious. Even one of the doctors that developed the original DSM is not happy with this new edition.
It's really the, "let's wait and see," attitude that makes me crazy. Let's see: The road up ahead doesn't look quite right, but let's wait and see. Oh, it seems there was a cliff at the end of it. Oh well, too late to do anything about it now.
I have people in my family that work in health, and are taking this to the legistature of the state, but the have a vested interest in tossing ASD people off the medicaid roles. My suggestion has been an injunction. Once someone stops the thing, and it becomes a legal fight, suddenly the spotlight of the media hits it, and it can be changed. So far, the media would rather report on how big the moon looks at perigee. Yes, very pretty, but not helpful.
Sorry if I come across as cynical, but my travels through the fine system our government has set up for us has resembled something like a trip through the gears of Big Ben, and a maze of mirrors and razor blades.
BTW, if there is a spell checker on this blog, I don't seem to see the link. Spelling has always caused me trouble.
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