This commentary uses the framework of my attendance at Interagency Autism Coordinating Committee (IACC) meetings to discuss issues of agency, "voice," and responsible representation. Additionally, I talk about issues that are important to the autistic community and how I subvert what the IACC calls "a sense of urgency" about autism in its Core Values statement, 1 conveying urgency about quite different concerns of autistic members of society.

I

No one person or organization can claim to speak for every autistic person. For a range of reasons, this principle is particularly important to those of us in the autistic community. First, a number of mainstream autism organizations purport to represent the needs and interests of autistics without even minimal input from, or consultation with, those same autistics. Second, the autistic community is not a unitary voice but a collection of various viewpoints, interests, and needs of individuals within that community. Third, autistics communicate in a variety of ways, including non-language forms of communication, written communication, and speech. The idea of "speaking" is a site of fraught interactions between autistic self-advocates and those who use the metaphor of speech to stand in for a host of issues and concerns, sometimes quite inimical to the concerns of self-advocates. Since speech-as-talking is privileged over these other forms, the legitimacy of all autistic communicators to represent themselves or to advocate for others on the autism spectrum is repeatedly called into question. 2 With so many entities claiming to speak for autistics, I endeavor to not repeat this practice in my own advocacy work.

In my work, I try to provide the most responsible representation possible, including in my recommendations the wide range of needs and concerns of those on the autism spectrum. To speak truth to power in this case literally requires not only the capacity to communicate to IACC members but also the openness to be ready to listen to voices/writings/communication/body language/actions of as many people on the autism spectrum as possible. My primary commitment is to people on the autism spectrum, particularly those who most need practical services and supports. My secondary commitment is to family and community members, whose personal stories I try to listen to with care and respect. Likewise, while the Autistic Self Advocacy Network (ASAN) is an important voice in the autistic community and has been highlighted in this article, autistics who are not associated with ASAN have also made significant contributions to the IACC process.

II

The Interagency Autism Coordinating Committee (IACC) is mandated by Public Law 109-416, the short title of which is "The Combating Autism Act of 2006." 3 From its inception, many autistic people have taken offense at the war rhetoric in the title, with its implication of violence to bodies, in this case autistic bodies.

People who desire a cure for, or prevention of, autism often point to the short title as "proof" that autism must be combated aggressively, endorsing an "anything goes" philosophy, and eschewing anything less than the complete eradication of autism. The "combat" metaphor tends to encourage the many untested and unproven "treatments" which sometimes have resulted in devastating and even fatal outcomes for autistics and other people with disabilities. 4 Autistic people are also bullied, restrained and secluded in schools, and subjected to institutional abuse for which there is no legal remedy. 5 For these reasons, I do not use the short title in any of my writings or commentary unless clarification is needed.

According to the government website, the purpose of the Interagency Autism Coordinating Committee is to "coordinate all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD)."6 The IACC is composed of both federal agency representatives and public members, who are mandated by law, including "at least one … member…with a diagnosis of autism spectrum disorder." The committee is chaired by the director of the National Institute of Mental Health (NIMH). Other federal agency members include heads of institutes within HHS, such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) and other HHS agencies, such as the Department of Education. 7 Public members include representatives from nongovernmental autism organizations and individuals with an interest in autism. 8 Only one person on the autism spectrum has a seat on the committee. While agencies have the right to appoint a substitute if they miss meetings, public members do not; if the lone autistic member of the IACC misses a meeting, autistic people have no autistic representative and therefore no autistic vote at that time. 9

All meetings of the IACC are open to the public, with a mandatory public comment period during each meeting to allow citizens a chance to speak. People can also send in written comments. IACC subcommittee, workgroup, and town hall meetings are also accessible to the public via webinars and conference calls. 10 Autistic people have taken advantage of the public comment sessions and periodic Requests for Information (RFIs). RFIs are requests for public comment on specific issues such as "priorities for autism research, concerns surrounding services and supports," and comments on the Strategic Plan, which the IACC is charged with developing and then updating yearly. 11

The presence of members of the Autistic Self Advocacy Network and other autistic individuals has also opened up opportunities for autistic individuals to give presentations to the IACC at full committee meetings and to participate in Scientific Workshops. ASAN is the leading autism advocacy organization that draws all of its leadership from people who are on the autism spectrum. The organization focuses on advocacy in public policy initiatives and education about autism, including the acceptance of neurodiversity, the idea that autism and other neurobiological differences are a legitimate part of human variety: while autism is a neurobiological difference, it is also clearly a disability, both in the sense of the social disability model and also in the sense of very real physical or intellectual and cognitive challenges. ASAN also sponsors social/support groups for people on the autism spectrum and is directly involved in projects such as community-based participatory research.

My role at IACC meetings has sometimes been that of an autistic member of the public and sometimes as a representative of ASAN. I have attended nine IACC meetings since March 14, 2008, and have commented at each. I was an invited panelist at a recent IACC Scientific Workshop, held from September 30-October 1, 2009. I have also written comments for various Requests for Information. By my regular attendance at IACC meetings, I strive to add one more consistent autistic voice to the debate about priorities for autism research.

III

I have focused on three major issues in my IACC comments: research regarding services and supports for autistic people, including Augmentative and Alternative Communication and funding considerations; accountability in research and the inclusion of autistics as fully collaborating research partners; and ethical concerns about the use of genomic and related research.

In the area of services and supports research, I encourage shifting the funding priorities and attention of the IACC and the agencies and organizations represented on the committee away from a preoccupation with "cures" and toward a concern with the actual lived experiences and quality of life of people on the autism spectrum throughout the lifespan, especially as that quality of life is defined and determined by autistics. I also stress practical concerns facing family and community members day-to-day.

In 2008, less than 1%, about $1.6 million of the $127 million total NIMH budget, was allocated for services and supports research. This one percent, recommended by those who are considered high-level experts on autism, was supposed to cover the following: service delivery, community inclusion issues, transition issues, education, housing, transportation, health care access, and other service-related research. 12 By contrast, in 2009, $75 million was allocated to a single cure-related research initiative. The initiative funded? The use of animal models and cell research for the express purpose of curing autism. From 2008 to 2009, the funding for that objective was increased from $50 million to $75 million; 13 meanwhile, the figure of $1.6 million for services research was left unchanged, with no objections. The subject was not even raised until I spoke during the public comment period.

Some members of the IACC have defended their funding recommendations by arguing that certain research project ideas are "not scientific." In the public comment session of the December 12th IACC meeting, I argued the following:

Public Law 109-416 is not just about scientific research. The presence…of representatives [from non-research agencies] indicates that the mandate of the law is broader than scientific research, especially as it has been more narrowly defined several times during the past two IACC meetings. The suggested additions [by other IACC members] about improving safety and other aspects of service development and delivery are relevant and should be addressed by this committee.

I also recommend adding a representative of the National Institute on Disability and Rehabilitation (NIDRR), as a voting member of the committee. The NIDRR is an agency within the Department of Education that is focused on research throughout the lifespan rather than exclusively during early childhood.

After a year and a half of meetings, including at least two extra, full IACC meetings convened in order to complete the Strategic Plan in a timely fashion, the professional judgment of IACC members on the allocation of funds remained essentially the same: overwhelmingly slanted toward "curing" autism. That 46 times more funding is allocated to animal models for a dreamed-of future cure rather than to efforts that might actually assist autistic people and our families and communities now speaks volumes about priorities that, although ostensibly geared toward improving the lives of those on the autism spectrum, in actuality ignore the material aspects of those lives in favor of some distant future world in which all autistics will be "normal," or normalized, if we exist at all.

Not one of the research opportunities in the Final Strategic Plan of January 2009 specifically addresses adaptive communication technologies, an area of paramount interest to many autistics, including those of us who need part-time assistance due to communication differences and difficulties. It is disconcerting that a plan developed by a committee of purported experts on autism does not have any meaningful language devoted to assisting autistics to communicate. Communication difficulties are one of the hallmarks of autism spectrum conditions, yet those who "speak" for autistics have managed to omit one of the most basic needs of autistics, and of all human beings: the need to communicate effectively. As ASAN President Ari Ne'eman stated in his November 30, 2007 comments to the IACC, "If one-tenth of the attention and funding now focused on finding a cure was put towards the promising possibilities in assistive communication technology, many people on the autism spectrum today viewed as "low-functioning" would be communicating successfully." 14

During the IACC's February 2009 meeting, I again focused ASAN's comments on the lack of funding and attention given to Augmentative and Alternative Communication (AAC). I pointed out that IACC's Strategic Plan contains only one reference to communication, a mere mention of the Picture Exchange Communication System (PECS). I recommended funding specific research initiatives into AAC, pointing out that these technologies will allow people on the autism spectrum to use and develop language in ways that are natural to us, both for those with no or little expressive language and for those who do have expressive language but cannot always access it reliably; and argued that autistic individuals must be consulted at all stages of the research, from design to implementation to evaluation, in order to develop effective communication tools." 15

Upon the conclusion of my comments, several IACC members engaged in what was, to my knowledge, the first discussion of having a presentation on AAC, and at IACC's May 4th meeting, two individuals gave presentations on AAC. Joanne M. Cafeiro, PhD., an autism researcher, discussed her current research, which focuses on how autistic children with severe communication impairments learn language. She discussed common myths about AAC; pointed out that AAC unlocks language that an individual is unable to express, as well as promoting language development; and emphasized the need to involve members of the autistic community in researching AAC. Dora Raymaker, an AAC user and also co-director of the AASPIRE Project and ASAN Board member, gave a presentation via telephone, using AAC to communicate with IACC members. 16 Raymaker pointed out that communication is important for autistics because "communication means empowerment: it means the ability to communicate one's self-determination. Communication is necessary for self-advocacy." She also stressed something that is common knowledge among autistics who write about communication differences: communication is not necessarily speech. "For some of us, communication involves speech, but for others speech may impede or even inhibit our ability to communicate." That statement applies to Raymaker, who would not have been able to give the presentation without the use of AAC.

The AAC presentations were followed by remarks made by several autistics during the public comment session. Katie Miller, one of the ASAN members who spoke during the session, stated that "communication is a basic human right and no one should be denied that opportunity…AAC research is vastly under-funded, leaving countless Autistics unable to express their thoughts due to lack of compatible technology."She then linked the issue of communications technology with the concern about "voice," especially autistic voices not represented formally on the IACC: "While this is evidence of progress, Autistic voices should be a regular, organized, and consistent presence within the IACC, not an incidental occurrence." 17

The second issue I have focused on is accountability and the inclusion of autistics as active collaborators in research, rather than mere research subjects to be studied and then written about, often in language that many autistic people find demeaning. We must insist on being "speaking subjects," 18 with our participation and input used in meaningful ways, rather than being "spoken subjects," a position which can lead to misinterpretation of research results and to uninformed experiments. For example, recent suggestions about "eye contact training," redirecting the eye gaze of small toddlers toward eyes instead of mouths, is based on non-autistic ways of thinking and is counterintuitive to easily accessible accounts of autistics' reasons and theories for low or no eye contact. 19

One way to achieve accountability is to use a community-based participatory research (CBPR) or a participatory action research (PAR) model. The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) offers one such model. AASPIRE brings together people from three communities: the academic community, the autistic community, and the community of people who provide supports and services to autistics, to conduct research that is relevant to the needs and interests of autistic adults. One of the co-directors of AASPIRE is autistic; the other is a disparities researcher and the parent of an autistic child. ASAN is the community-based organization for AASPIRE, and members of the team participate in all aspects of the research, including development, conducting the actual studies (including recruitment), data analysis, and dissemination. AASPIRE is a comprehensive model of a research project that constructively addresses some of the ethical concerns autistics have about how research is conducted. 20

The third issue I have focused on is a concern about the nature and intent of genomic and related research. Autistic community members are concerned about the rhetoric of "elimination" and "prevention" used by prominent funding organizations, researchers, and the media. When I spoke at the IACC meeting on March 14th, 2008, I introduced myself as "an autistic citizen and taxpayer." Drawing on discourses of citizenship and patriotism and the ever-present concern with taxes, I stated that "federal research funding should not be equated with research that could be interpreted as a program of eugenics for any subpopulation of United States citizens." I intended to undermine the rhetoric I first encountered in a petition spearheaded by the organization Cure Autism Now (CAN), urging members of Congress to support the "Combating Autism Act" before it was passed. The petition used the rhetoric of "burdens on society," which was a staple of the early eugenics programs of the 1920s, and stated that "individuals with autism require a lifetime of services and interventions, all of which pose a tremendous financial and emotional drain on not just their families, but on our nation as a whole." 21

Public Law 109-416 authorizes nearly one billion dollars of taxpayer money to be appropriated for autism research over a five-year period. That money, spent by "our nation as a whole," mostly funds genetic and pharmaceutical research; it does not benefit a single individual with autism. As an autistic taxpayer, I want to see funds spent not on the chase for causes and "cures," but on research that will directly impact the lives of people on the autism spectrum in a practical and ethical way.

The autistic community's concern about eugenics is based on historical precedent. The prenatal test for Gaucher disease has led to a 91-93% selective abortion rate for Down Syndrome fetuses, and a study published in the peer-reviewed Journal of the American Medical Association in 2007 recommended against prenatal testing for Gaucher disease. 22 Comments about "eliminating" autism by spokespeople for funding organizations, coupled with negative portrayals of autism by the media, 23 fuel concerns that a prenatal test for autism will encourage potential parents to terminate the lives of fetuses that test positive for the genes that researchers now frantically race each other to discover. 24

IV

Who is permitted to represent autistics? Parents, researchers, "the taxpayer," but rarely autistics ourselves. Autistics who can use expressive language (communication by voice, keyboard, picture exchange systems, and other means) are often dismissed as "not knowing anything about autism," yet when it suits, we are also dismissed as "too vocal about autism." Autism organizations persist in promoting the figure of "the voiceless autistic," 25 implying that autistic people do not communicate at all. All people, including all autistic people, communicate, although not all communication is easily understood by others.

When I wrote, "I am an autistic citizen and taxpayer," I was keenly aware of the ways in which people on the autism spectrum are always already marginalized as non-citizens, even though some of us hold jobs, pay taxes, and communicate our concerns to policymakers. Many of the public discussions about autism research tend to "other" autistic people, just as people of color, women, and other oppressed groups have been "othered." The use of puzzle-piece logos conveys the idea that we are more puzzling than the "average" human being or that we have "missing pieces" and are not whole people. A person who is constructed as not-quite-whole suffers a sort of social death and, therefore, need not be taken seriously. If we are not fully human, we are not considered to be fully capable of real communication, no matter our persuasiveness, our intelligence, or our expertise as we are standing before a government committee talking about ethics in research.

I do not hear much from researchers themselves on the topic of "Who can speak for autistics?" Perhaps researchers generally consider themselves to be situated above that nonscientific fray. It is rarely the researcher's place to speak for the subject of research. Researchers confine themselves to speaking about the research subject. The word "subject" carries with it a long history of colonization and the need for "surveillance," a word that appears in Public Law 109-416 six times. Mandatory autism registry legislation is being introduced, often linked with "birth defect" databases, all of which will further epidemiological and other research.26 I am reminded of Foucault's discussion of surveillance during the plague in seventeenth-century France.27 Autism has clearly been added to the Panopticon of "disorderly" conditions requiring heightened disciplinary measures.

V

Despite our limited input to the committee, I am guardedly optimistic about the effect autistic input is starting to have on the IACC. When members of the autistic community confront decision makers at the moment decisions are being made, those (mostly non-autistic) decision makers must at least stop for a moment to consider what is being said and who is saying it. When some of us start showing up at Interagency Autism Coordinating Committee meetings and making recommendations, we urge a rethinking of funding and research priorities, proposing research into augmentative and assistive communication technologies so that our voices, and more of them, will be heard. Rather than acquiescing in being acted upon as passive subjects, autistics who recognize and assert our agency often baffle those whose concept of autism mirrors a recent article published during the promotion of a state autism insurance bill. The article opens with the assertion, written in somewhat archaic language, that health insurance coverage for autism-related services will save autistic children (by implication or by omission, all autistic children, and therefore all autistics, children and adults) from "lifelong dependency as wards of the state." 28

Autistic input is received, noted, and sometimes discussed by IACC members; our communications (whether by physical "voice" or other means) are important to at least some of the committee members. While autistic communications are put before the IACC in various forms, written and spoken, not all of our input will be considered important, and the more "radical" ideas, such as the avoidance of eugenics, probably will not become official parts of the Strategic Plan or other documents. Some of what we say may be re-worded, not always to our liking. On the other hand, our input is not being ignored, as evidenced by invitations to give presentations and participate in Scientific Workshops. In addition, some of our suggested changes were incorporated into the January 2009 IACC Strategic Plan for Autism Spectrum Disorder Research. For example, the statement, "It is important to consider the impact of research on the human rights, dignity, and quality of life of people with ASD from prenatal development forward," taken directly from ASAN's Coalition document, was added to the Core Values section of the IACC's Strategic Plan. 29 A second concern that was incorporated into the Strategic Plan was for a research focus on the unique strengths and abilities of individuals with ASD. Although to date no research on strengths and abilities has been funded, a precedent has been set to encourage that research. In addition, several important language changes were made to the 2010 update of the Strategic Plan, for example replacing "symptoms" with "characteristics," but only in those sections where ASAN had strong input during the Scientific Workshop. While the process of providing our input to IACC is sometimes slow and frustrating, it is already having, and hopefully will continue to have, an impact on federal priorities for autism research.

Endnotes

  1. Retrieved August 6, 2009 from http://iacc.hhs.gov/reports/2009/iacc-strategic-plan-for-autism-spectrum-disorder-research-jan26.shtml


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  2. Retrieved November 24, 2009 from http://www.cwru.edu/affil/sce/Texts_2007/Ne'eman.html. "Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum" by Ari Ne'eman.


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  3. Retrieved August 6, 2009 from http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=109_cong_public_laws&docid=f:publ416.109.pdf


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  4. "Boy with Autism Dies after Chelation Therapy." Retrieved August 6, 2009 from http://www.msnbc.msn.com/id/9074208; retrieved August 6, 2009 from http://www.aboutlawsuits.com/hyperbaric-chamber-lawsuit-filed-over-fire-4790/


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  5. "Seclusions And Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers." Retrieved July 31, 2009 from http://www.gao.gov/new.items/d09719t.pdf


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  6. Retrieved August 6, 2009 from http://iacc.hhs.gov/


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  7. Retrieved August 6, 2009 from http://iacc.hhs.gov/about/member-roster.shtml


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  8. Retrieved August 6, 2009 from http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=109_cong_public_laws&docid=f:publ416.109.pdf


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  9. Personal communication with IACC member.


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  10. Retrieved August 6, 2009 from http://iacc.hhs.gov/public-comment/


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  11. Retrieved August 6, 2009 from http://iacc.hhs.gov/public-comment/


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  12. Retrieved January 18, 2009 from http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/nih-initiatives/fy-2007-nih-asd-research-portfolio-summary-by-research-area.shtml


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  13. http://iacc.hhs.gov/events/2009/full-committee-mtg--minutes-jan14.shtml


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  14. Retrieved August 7 2009 from http://iacc.hhs.gov/events/2007/full-committee-mtg-minutes-nov30.shtml


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  15. Retrieved August 7 2009 from http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=51


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  16. Retrieved August 7 2009 from http://aaspireproject.org/presentations/iacc_2009_slides.pdf


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  17. Retrieved August 7 2009 from http://iacc.hhs.gov/events/2009/full-committee-mtg-minutes-may4.shtml


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  18. "Can the Subaltern Speak?" by Gayatri Chakravorty Spivak. Retrieved November 24, 2009 from http://www.mcgill.ca/files/crclaw-discourse/Can_the_subaltern_speak.pdf


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  19. "Eye Contact" by Jean-Paul Bovee. Retrieved November 26, 2009 from http://maapservices.org/Publications/Bovee_Eye_Contact_Article.asp


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  20. Retrieved August 6, 2009 from http://aaspireproject.org/; retrieved August 6, 2009 from http://aaspireproject.org/projects.html


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  21. Retrieved January 21, 2009 from http://www.combatautism.org/atf/cf/%7B6864EF63-6B65-4A0A-AE5D-3F0E1363F9EB%7D/Blank%20Senator%20Petition.pdf


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  22. "Carrier Screening for Gaucher Disease: More Harm Than Good?" Retrieved July 31 2009 from http://jama.ama-assn.org/cgi/reprint/298/11/1329.pdf Beutler JAMA.2007; 298: 1329-1331. Also, "Israeli Study Raises Questions about Prenatal Testing." Retrieved August 7 2009 from http://www.medicalnewstoday.com/articles/83400.php


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  23. In a recent recurrence of eugenics-like language, Peter Singer, infamous for his disregard for people with disabilities, asserts that healthcare should be rationed and uses this as an equation for decisionmaking: "If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life." Retrieved August 6, 2009 from http://www.nytimes.com/2009/07/19/magazine/19healthcare-t.html

    An incisive rebuttal by the Justice For All Action Network (JFAAN) was sent to the New York Times: "The New York Times has failed in its public responsibility to treat citizens of the United States with the simple respect we deserve by serving up people with disabilities as a drain on public resources and to legitimize the denial of medical care to those of us who need that support the most." Retrieved August 6, 2009 from http://jfactivist.typepad.com/jfactivist/2009/08/jfaan-response-to-nytimes-article-.html


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  24. "Autism research focuses on early intervention: Genetic clues sought in fight against disorder," Sue Herera. Retrieved August 6, 2009 from http://www.msnbc.msn.com/id/7013251; retrieved from http://www.parade.com/articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything


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  25. Such organizational names, listed here as part of the URL for the website of two such organizations: Autism Speaks: http://www.autismspeaks.org, The Voice of Autism: http://the-voice-of-autism.com/. For a refutation of the "voice of autism" metaphor, see http://www.autistics.org/, "the real voice of autism."


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  26. Retrieved November 28, 2009 from http://delcode.delaware.gov/title16/c002/sc03/index.shtml


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  27. Retrieved January 18, 2009, from http://cartome.org/foucault.htm. Source: Foucault, Michel Discipline & Punish: The Birth of the Prison (NY: Vintage Books 1995) pp. 195-228. Translated from the French by Alan Sheridan, 1977.


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  28. Retrieved January 21, 2009 from http://www.dailypress.com/news/opinion/dp-op_autism_0111jan11,0,5931701.story. "Here's why Virginia should mandate coverage for autism." January 11, 2009.


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  29. Retrieved November 24, 2009 from http://asansouthwestohio.blogspot.com/2008/10/asan-coalition-comments-on-iacc-draft.html. The Coalition included various organizations that represent views of the autistic and disability communities: the Autistic Self Advocacy Network (ASAN), Autism Network International (ANI), Autism National Committee, The Autism Acceptance Project (TAAP), the American Association of People with Disabilities (AAPD), and TASH.


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