November 10, 2009
Thank you for this opportunity to comment on updating the IACC Strategic Plan. I am representing the Autistic Self Advocacy Network.
My comments on October 23 focused on ethical issues, concerns about the appropriateness of early intervention and associated research, permissions for acquisition of biological materials, and the IACC’s recommended budget being skewed severely in favor of research into “causes and prevention” rather than practical and appropriate interventions, such as improvements in educational interventions, services and supports.
I have had an opportunity, through the IACC Scientific Workshop Panel process, to make some language changes and suggestions that should apply throughout the Strategic Plan. Since I was on Panel 1, “When Should I Be Concerned?” I will use that section of the 2009 Strategic Plan as an example of changes ASAN would like to see incorporated throughout the entire 2010 Plan:
Many of these changes reflect either more accurate and useful terminology or more respectful language that does not introduce an undertone of disrespect, fatalism, or excess pathologizing of autism.
Anywhere the term “high risk” is used to characterize the likelihood of siblings also being on the autism spectrum, the language should be changed to just that: “high likelihood” rather than “high risk.”
“Abnormal” should be changed to “atypical,” as we have done for the Panel 1 final document.
Anywhere interventions are mentioned, the use of the qualifier “appropriate” should be inserted, addressing our community’s concerns about “intervention for the sake of intervention,” and especially in the light of the obvious disregard of and dismissal of autistic input into the research process to date.
Rather than “early warning signs,” we strongly suggest “early indicators,” which is more scientifically accurate and does not introduce negative value judgments into identifying indicators of autism or atypical development.
Instead of “symptoms,” “characteristics” and “conditions” are more appropriate, since autism is not a disease process but a neurobiological difference.
The use of the term, and concept of “severity,” is questionable for several reasons. First, “severity” is often contextual, over both time and other things like situation and location. What is being looked at when using the “severity” criterion is how “observable” the autistic characteristic is. Whether or not a characteristic is observable and to what degree does not necessarily correlate with other aspects of the person. Again, the focus needs to be on improving the quality of life and not on reducing autistic traits. For this reason we prefer the term “variability,” which indicates that both abilities and disabilities can be present in the same person, and that abilities and disabilities can change over time, whether permanently, or temporarily, in the presence of other factors, such as external environment. “Variability” refers to variability of autistic traits. Where the concept of “severity” is used it must be tempered with research into autistic strengths and also neutral, but autistic, characteristics.
I have made another language change, from “pathology” to “differences in neurobiology and cognition,” which is more specific and avoids the concept that all autistic differences are pathological. Many of them are not.
I have rewritten the first section of the Strategic Plan, with its three sub-questions, to read:
“When Should I Be Concerned?”
-“What are the Early Indicators of ASD?” (rather than “What are the early warning signs?”)
-“Are there typical characteristics that are part of an ASD diagnosis?” (I left that the same, since you already used “characteristics”, which is the preferred term.)
-How much variation is there in characteristics and pattern of abilities and disabilities (over time and depending on context)?”
In addition, undue focus should not be placed on “losing symptoms” of autism, without qualifying language indicating that the “loss” could be due to learning of skills, and certainly should not indicate, at this early stage in research, that these research subjects have become non-autistic. Especially in the light of reports that many of the subjects still retained co-occurring symptoms often found in autistics, such as OCD, anxiety, ADHD, etc., the public should not be encouraged to think that “loss of autistic symptoms” is “loss of autism.” I have changed the sentence in Panel 1’s draft to: “Finally, evidence is emerging that some children ‘lose’ explicit characteristics of ASD although it is not clear whether that loss of autistic characteristics is permanent throughout the lifespan, or whether it reflects “learning skills” rather than “losing characteristics.”
I have reformulated one of the Research Opportunities to: “Inclusion of bioethical and other ethical considerations into the diagnosis and screening process, including but not limited to consideration of the implications of genetic testing and detection of maternal antibodies. Maternal antibodies is an emerging area of concern for us which is reflected nowhere in the current Plan or suggested revisions.
NIMH and other grant-making institutions should not fund research that uses or promotes the use of restraints, aversives, and seclusion. There is a growing movement in society away from the use of these draconian measures, reflected in current legislative efforts to ban their use. Restraints, aversives and seclusion are used disproportionately against people with disabilities, including autism and other developmental, intellectual, and behavioral disabilities. In no case should researchers applying for grants to study restraints and aversives, either to further their use or to legitimize that use, be allowed access to federal funds, including funds from private/federal partnerships. Research that promotes restraint reduction and elimination should be funded as a high priority in order to keep autistic and people with other disabilities safe.
Research into communication differences must be given higher priority than it was given in the 2009 Strategic Plan. A mere mention of Picture Exchange Communication Systems is not enough, given that PECS does not work for everyone on the spectrum, nor does it address the needs of people who need communications technology and/or systems part-time, as a supplement to speech and/or writing, or the need for systems that are flexible enough to accommodate a wide variety of changing communication needs. It also does not necessarily address the needs of people who use non-language-based communication and/or non-symbol-based systems. Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.
Finally, in order to accomplish the goal of achieving the best possible outcome for all people on the autism spectrum, autistic adults should be consulted and should participate in all levels and tasks of research on autism. Autistic adults with a perspective that focuses away from questionable cures and “elimination” of autism should be given a seat on the Interagency Autism Coordinating Committee. Nothing About Us Without Us.
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network
Wednesday, November 11, 2009
IACC Comments, October 23, 2009
Thank you for permitting me to address this meeting of the Interagency Autism Coordinating Committee. I am representing the Autistic Self Advocacy Network.
I appreciate having had the opportunity to represent ASAN at the recent Scientific Workshop. The meeting offered many opportunities to make changes as the Strategic Plan is updated for 2010.
Inclusion of an objective to study ethical issues related to “the assessment and communication of genetic, environmental, and clinical risk for autism” was one of the recommendations from Panel 1, the panel I participated in. This objective does not go far enough in that it only addresses assessment and communication of risk. It does not address other ethical issues which we believe to be important. Therefore we strongly urge an objective that would address ethical, legal, and social issues related to all aspects of research, not just the communication of risk, although that is a critical area, given recent developments in identifying prenatal risk factors.
Another area for concern about ethics is early intervention, as interventions are initiated at earlier and earlier ages . Ideas about what early interventions will work are generally based on assumptions of non-autistic people about what “the reasons for autistic behaviors” might be, with little to no input from autistic adults, who can inform and guide research.
A concerted effort is being made to increase acquisition of biological materials, such as skin fibroblasts, brains, and other tissue types. There is an ethical concern with collecting biologic samples from young children, who are not capable of giving permission. Potentially, children might not want to contribute biological material, if one of the purposes was for developing a prenatal test aimed at selecting people like themselves out of the gene pool. Although there are many reasons for collection of biological materials, this concern must be addressed. People on the autism spectrum who can communicate,* and people with other disabilities such as Down Syndrome, and their families, have advocated against, and continue to advocate against, such an aim.
In general, recommendations of many of the panelists to include adults in many sections of the Strategic Plan are a step in the right direction.
Although the IACC does not fund research, presumably it has some influence on research priorities, or it would not bother to come up with budget recommendations. Here are some figures from the 2009 Strategic Plan.
Recommended budget for diagnosis and assessment: $133,600,000
For biology and risk factor research, $179,000,000. For causes and prevention, $216,400,000 [almost 28% of the IACC recommended budget]. Treatment and intervention gets $190,100,000.
For “Where Can I Turn For Services?” Where, indeed? Not to the IACC recommended budget, which suggests a grand total of $25,330,000 [3.27%]. If research were really funded at the levels recommended by the IACC, that question becomes even more anxiety-provoking for autistics and our families. We will certainly need to turn to avenues other than the IACC for answers to questions about needed services and supports. Research into causes, biomarkers, prevention, etc. will not help people who are alive today and need evidence-based information about services and supports.
Recent research and initiatives in the United Kingdom can provide a model for services-oriented research and also research into adult issues. The National Health Service has released a study of autistic adults, indicating that prevalence of autism in adults in the UK is one in a hundred, similar to the recent figure here of 1 in 91 children. Interestingly, the NHS report avoids alarmist rhetoric and talk of “an epidemic of autism.” In addition, initiatives such as the “Don’t Write Me Off” employment campaign and “Supporting people with autism through adulthood” can make a real difference in the lives of autistics, especially and young people who are transitioning out of school settings. Sadly, the United States is falling behind on crucial issues related to services and lifespan issues and is failing autistic adults, families and communities.
Currently the Strategic Plan does not address communication differences and disabilities at all. This is a surprising omission, since one of the criteria for an autism diagnosis is communication disability. Although panel 4, on treatments and interventions, mentioned communication as an emerging tool, specific mention of communication research should be incorporated into the 2010 Strategic Plan.
*[Note: The comment "people on the spectrum who can communicate is NOT intended to mean that there are autistic people who cannot communicate. Everyone communicates. It's an error I wish I had caught before I delivered the comments, but I am posting the comments as I delivered them.]
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network
Tuesday, October 20, 2009
Washington DC: ASAN and Allies Protest Autism Speaks, October 31 2009
ASAN and Allies Protest Autism Speaks in Washington, D. C. on October 31, 2009
Join The Autistic Self Advocacy Network and allies as we protest Autism Speaks at their “Walk for Autism” on Saturday, October 31 at the National Mall in Washington DC.
Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against autistic people as a fundraising tool does real damage to people with disabilities and to the cause of disability rights.
We protest the agenda of Autism Speaks and the organizations that have merged into it, including Cure Autism Now and the National Alliance for Autism Research. Comments by co-founder Suzanne Wright include a call to “eradicate autism for the sake of future generations,” ignoring autistics who are here now and our families and communities. Although Autism Speaks is capable of addressing the very real needs of autistic children and adults, and our families and communities, it chooses not to.
An analysis of Autism Speaks 2008 financial report reveals that only 4% of Autism Speaks’ total funding is spent on family services. 65% is spent on research in areas that focus on “curing” autism. Another 28% is spent on “awareness” and fundraising. The “awareness” component does almost nothing to educate people about autism itself and is mostly geared toward raising funds for “curing” autism. Pages on Autism Speaks’ website support James Watson, who was dismissed from Cold Spring Harbor Laboratory after making grossly racist remarks, and Autism Speaks has funded Dr. Joseph Buxbaum, who asserted that a prenatal test would soon be available, indicating what sort of “cure” might be expected.
The literature in the “Participant Guide” that is used specifically for fundraising for the Autism Speaks “Walk for Autism” walks includes such language as “shocking,” “terrifying,” and the coupling of cancer and AIDS statistics with autism statistics. This rhetoric is offensive and misleading, adding to the stigma autistics and other people with disabilities must face from society.
Autism Speaks' recent PSA, titled “I Am Autism,” presents autistic individuals as kidnap victims, burdens, and inhuman. In the video, autism is presented as a soul-stealing entity that ruins marriages, causes bankruptcy, triggers embarrassment, and erodes morality.
This latest example of using fear, pity and stigma to raise money is in line with Autism Speaks past fundraising videos, which have presented being autistic as akin to being in a fatal car accident, being struck by lightning and other situations resulting in death. The walks are held in order to fund a mega-million operation (over $22 million this year raised from “Autism Walks” alone), which includes annual salaries that go as high as $600,000 a year for top executives. All the efforts in Washington DC have raised almost enough to pay the salary of one top-level executive in the organization: $461,918.
Autism Speaks does not give any consideration to the damage its alarmist rhetoric causes to autistic people and our families and friends. Although claiming to “speak” for autistics, autistic self-advocates are not represented at any level in the organization.
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.
We will carry out our protest at the Old Folklife Festival Site, between Constitution Avenue and Madison Drive, in between 14th and 15th Streets. We will assemble there between 8 a.m. and 8:30 a.m. The closest Metro stations to the protest site are Smithsonian and Federal Triangle.
Please RSVP to the address below so we will know how many people are coming. Metro transportation information is below the ASAN addresses.
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network
pdurbinwestby@autisticadvocacy.org
http://www.autisticadvocacy.org/
--
Metro accessibility information:
http://www.wmata.com/accessibility/metrorail.cfm
http://www.wmata.com/rail/maps/find_station.cfm#c30
Join The Autistic Self Advocacy Network and allies as we protest Autism Speaks at their “Walk for Autism” on Saturday, October 31 at the National Mall in Washington DC.
Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against autistic people as a fundraising tool does real damage to people with disabilities and to the cause of disability rights.
We protest the agenda of Autism Speaks and the organizations that have merged into it, including Cure Autism Now and the National Alliance for Autism Research. Comments by co-founder Suzanne Wright include a call to “eradicate autism for the sake of future generations,” ignoring autistics who are here now and our families and communities. Although Autism Speaks is capable of addressing the very real needs of autistic children and adults, and our families and communities, it chooses not to.
An analysis of Autism Speaks 2008 financial report reveals that only 4% of Autism Speaks’ total funding is spent on family services. 65% is spent on research in areas that focus on “curing” autism. Another 28% is spent on “awareness” and fundraising. The “awareness” component does almost nothing to educate people about autism itself and is mostly geared toward raising funds for “curing” autism. Pages on Autism Speaks’ website support James Watson, who was dismissed from Cold Spring Harbor Laboratory after making grossly racist remarks, and Autism Speaks has funded Dr. Joseph Buxbaum, who asserted that a prenatal test would soon be available, indicating what sort of “cure” might be expected.
The literature in the “Participant Guide” that is used specifically for fundraising for the Autism Speaks “Walk for Autism” walks includes such language as “shocking,” “terrifying,” and the coupling of cancer and AIDS statistics with autism statistics. This rhetoric is offensive and misleading, adding to the stigma autistics and other people with disabilities must face from society.
Autism Speaks' recent PSA, titled “I Am Autism,” presents autistic individuals as kidnap victims, burdens, and inhuman. In the video, autism is presented as a soul-stealing entity that ruins marriages, causes bankruptcy, triggers embarrassment, and erodes morality.
This latest example of using fear, pity and stigma to raise money is in line with Autism Speaks past fundraising videos, which have presented being autistic as akin to being in a fatal car accident, being struck by lightning and other situations resulting in death. The walks are held in order to fund a mega-million operation (over $22 million this year raised from “Autism Walks” alone), which includes annual salaries that go as high as $600,000 a year for top executives. All the efforts in Washington DC have raised almost enough to pay the salary of one top-level executive in the organization: $461,918.
Autism Speaks does not give any consideration to the damage its alarmist rhetoric causes to autistic people and our families and friends. Although claiming to “speak” for autistics, autistic self-advocates are not represented at any level in the organization.
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.
We will carry out our protest at the Old Folklife Festival Site, between Constitution Avenue and Madison Drive, in between 14th and 15th Streets. We will assemble there between 8 a.m. and 8:30 a.m. The closest Metro stations to the protest site are Smithsonian and Federal Triangle.
Please RSVP to the address below so we will know how many people are coming. Metro transportation information is below the ASAN addresses.
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network
pdurbinwestby@autisticadvocacy.org
http://www.autisticadvocacy.org/
--
Metro accessibility information:
http://www.wmata.com/accessibility/metrorail.cfm
http://www.wmata.com/rail/maps/find_station.cfm#c30
Thursday, October 15, 2009
ASAN protests Autism Speaks in Boston, October 18
In light of Autism Speaks' draining funds from local communities, lacking representation of autistic people in leadership positions, and repeatedly using inaccurate and stigmatizing language, the New England chapter of the Autistic Self Advocacy Network (ASAN) is planning to protest the Autism Speaks walk in East Boston MA on Sunday, Oct. 18, 2009. The walk will take place at Suffolk Downs, 111 Waldemar Ave., East Boston MA 02128. Protesting begins at 8.45am, registration opens 9am, walk starts 10.30am. Over 60 national, international, and local disability rights organizations have signed onto a joint letter issued by ASAN condemning lack of representation, exploitative and unethical practices by Autism Speaks. The letter and accompanying press release are posted on the ASAN website: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61 http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=60 The Boston protest comes on the heels of a successful ASAN protest at an Autism Speaks walk in Columbus OH on Sunday, Oct. 11, following distribution of flyers by ASAN members at a student involvement fair at Ohio State University. Links below: http://asansouthwestohio.blogspot.com/2009/10/autism-speaks-in-columbus-let-them-eat.html http://asancentralohio.blogspot.com/2009/10/autistic-community-protests-autism.html http://www.youtube.com/watch?v=sUBfyfjIccA http://autisticselfadvocacynetwork-ohio.blogspot.com/2009/09/asan-osu-involvement-fair-activism.html ASAN also protested in Portland OR at an Autism Speaks walk on Saturday, Sept. 26. Local TV stations reported on the protest: http://www.youtube.com/watch?v=jYeZVQu5H3A http://www.youtube.com/watch?v=JxIPqE3DYG4 http://www.youtube.com/watch?v=74I5IdzzAPA If you are interested in attending the protest in Boston, please contact asannewengland AT hotmail DOT com.
Wednesday, October 7, 2009
Press Release: Disability Community Condemns Autism Speaks
For Immediate Release
Contact: Ari Ne’eman, President
Wednesday, October 7th, 2009
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or info@autisticadvocacy.org
Disability Community Condemns Autism Speaks
Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization
Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (attached) will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization. The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”.
The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.
ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.
“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….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,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.
Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related).
The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:
a) Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death
b) The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries
c) The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership
“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.
The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.
“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”
“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”
The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.
“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”
About ASAN
The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens.
For more information, visit http://www.autisticadvocacy.org/.
Contact: Ari Ne’eman, President
Wednesday, October 7th, 2009
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or info@autisticadvocacy.org
Disability Community Condemns Autism Speaks
Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization
Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (attached) will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization. The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”.
The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.
ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.
“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….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,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.
Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related).
The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:
a) Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death
b) The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries
c) The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership
“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.
The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.
“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”
“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”
The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.
“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”
About ASAN
The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens.
For more information, visit http://www.autisticadvocacy.org/.
"I Am Autism" video: Disability Community Responds to Autism Speaks
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 fundraising 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 fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising 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 fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising 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.
National and International Organizations:
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 (DREDF)
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
The Autism National Committee
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
The Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2
The Center for Self-Determination
Disability Rights Advocates
Kids As Self-Advocates (KASA)
Service Dog Central
MHONA International
The National Empowerment Center
Disabled Youth Collective (DYP)
The Arc of the United States
The National Coalition of Mental Health Consumer/Survivor Organizations
Feminist Response in Disability Activism (FRIDA)
The ICORS Asperger’s Listserv
ADA Watch/National Coalition on Disability Rights
The Asperger’s Women Association (AWA)
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland in Scotland, the United Kingdom
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom
The London Autistic Rights Movement (LARM) in the United Kingdom
The Aspergers Network in the United Kingdom
Local, State, and Regional Organizations:
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
The Disability Activists Work Group (DAWG) in Oregon
APSE-Oklahoma
North Carolina Disability Action Network
Access Living of Metropolitan Chicago in Chicago, Illinois
Topeka Independent Living Resource Center in Topeka, Kansas
Disabilityworks in Chicago, Illinois
Ardinger Consultants & Associates in Maryland
Statewide Parent Advocacy Network of New Jersey
Wisconsin Family Assistance Center for Education, Training and Support
Aspergers Young Adults of North Alabama (AYANA)
Access to Independence of Cortland County, Cortland, New York
Youth Power, New York
The New York Association on Independent Living
Self-Advocates As Leaders (SAAL) in Oregon
Green County Independent Living center in Oklahoma
The Beyond Compliance Coordinating Committee at Syracuse University in New York
Wednesday, September 23, 2009
I Am Autism Video: (Autism Speaks Gets It Wrong Again)
Reminiscent of the failed Ransom Notes campaign, the latest video in the Autism Speaks arsenal uses a disembodied “voice of autism” that uses threat tactics, aimed at parents of autistic children.
“Voice” of autism: The “voice” speaks in a creepy, gloating, clipped tone, accompanied by the type of music reserved for scary movie scenes, saying repeatedly “I will” do (something particularly nasty) to “you,” the parent of a child on the autism spectrum.
The litany of threats listed by the “voice” give an air of criminality to “autism.” Some of the threats include robbery, pain, and “relishing desperation.” “You ignored me… and that was a mistake,” threatens the voice.
“I am autism. I have no interest in right or wrong.” “I know no morality.” How dare Autism Speaks say that we have no interest in right or wrong? Yes, I know the creators of this video would say “It is autism that is speaking, not autistic people.” Think again: You cannot separate autism from the autistic individual; you impute immorality to us by pretending to speak “our” language. It’s offensive and it is damaging to us.
“Voices” of parents: The second half of the film is the “voices” of parents and others who are “fighting back.” A list of people who will fight against “autism” follows. “Parents, grandparents, schoolteachers, pediatricians, friends”, etc. Everyone but anyone on the spectrum.
“We speak the only language that matters,” the voices of the “autism community” assert. The “community” envisioned here is a monolithic community of fighters-against-autism and not the real-life community of parents (including autistic parents), families, and communities, many of whom are disgusted by Autism Speaks’ dehumanizing tactics.
The voices of real autistic people, and of families who do not subscribe to the personification of autism, and therefore their family members, as something sinister and criminal, clearly do not matter to Autism Speaks.
United Nations: Near the end of this section we hear repeated by many voices: “We are the United Nations.” It’s pretty clear that Autism Speaks is trying to gain a foothold in creeping out people in other countries.
The United Nations, by showing this film, violates its own principles in the UN Convention on the Rights of Persons with Disabilities:
“As a change of perceptions is essential to improve the situation of persons with disabilities, ratifying countries are to combat stereotypes and prejudices and promote awareness of the capabilities of persons with disabilities (Article 8).”
Finally, a voice of a parent/autism community member asks: “Autism, are you listening?”
Yes we autistics and our families and friends are. We are listening to myths, negative stereotypes, the co-opting of our very real and human voices, being made, ironically enough, to say things that we would not say, threaten people in ways that we would not threaten them, and participate in our own stigmatization. And we will not rest until this sort of Ransom Notes-esque “autism awareness” campaign is thoroughly discredited.
“Voice” of autism: The “voice” speaks in a creepy, gloating, clipped tone, accompanied by the type of music reserved for scary movie scenes, saying repeatedly “I will” do (something particularly nasty) to “you,” the parent of a child on the autism spectrum.
The litany of threats listed by the “voice” give an air of criminality to “autism.” Some of the threats include robbery, pain, and “relishing desperation.” “You ignored me… and that was a mistake,” threatens the voice.
“I am autism. I have no interest in right or wrong.” “I know no morality.” How dare Autism Speaks say that we have no interest in right or wrong? Yes, I know the creators of this video would say “It is autism that is speaking, not autistic people.” Think again: You cannot separate autism from the autistic individual; you impute immorality to us by pretending to speak “our” language. It’s offensive and it is damaging to us.
“Voices” of parents: The second half of the film is the “voices” of parents and others who are “fighting back.” A list of people who will fight against “autism” follows. “Parents, grandparents, schoolteachers, pediatricians, friends”, etc. Everyone but anyone on the spectrum.
“We speak the only language that matters,” the voices of the “autism community” assert. The “community” envisioned here is a monolithic community of fighters-against-autism and not the real-life community of parents (including autistic parents), families, and communities, many of whom are disgusted by Autism Speaks’ dehumanizing tactics.
The voices of real autistic people, and of families who do not subscribe to the personification of autism, and therefore their family members, as something sinister and criminal, clearly do not matter to Autism Speaks.
United Nations: Near the end of this section we hear repeated by many voices: “We are the United Nations.” It’s pretty clear that Autism Speaks is trying to gain a foothold in creeping out people in other countries.
The United Nations, by showing this film, violates its own principles in the UN Convention on the Rights of Persons with Disabilities:
“As a change of perceptions is essential to improve the situation of persons with disabilities, ratifying countries are to combat stereotypes and prejudices and promote awareness of the capabilities of persons with disabilities (Article 8).”
Finally, a voice of a parent/autism community member asks: “Autism, are you listening?”
Yes we autistics and our families and friends are. We are listening to myths, negative stereotypes, the co-opting of our very real and human voices, being made, ironically enough, to say things that we would not say, threaten people in ways that we would not threaten them, and participate in our own stigmatization. And we will not rest until this sort of Ransom Notes-esque “autism awareness” campaign is thoroughly discredited.
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