Thursday, August 30, 2012

Autistic Hoya: How Autism Speaks Must Change

How Autism Speaks Must Change | Jul 3rd 2012
To those who find my criticism of Autism Speaks too harsh, and to those who insist or are resigned into accepting that Autism Speaks will always exist and must change rather than disappear, if Autism Speaks were to make an absolute sea change, I would accept it under the following terms and no less:

1.) Adopt a community-based participatory research model for all grant review. Specifically, at least 55% of all scientific advisory boards and grant review panels must be comprised of Autistic people (who can sometimes also be parents, professionals, or researchers), while the remaining members may be non-Autistic family members, professionals, and researchers. Furthermore, these boards and panels must have actual decision-making power.

2.) Autistic people must be meaningfully represented and included throughout the organization's leadership. Specifically, the national Board, all local or regional Board, and all advisory councils must meaningfully include Autistic people as at least one-third of the members or appointees at a basic minimum, with the targeted number at 55% representation. Those members must have equal decision-making power as non-Autistic members. Furthermore, Autism Speaks must hire competent and qualified Autistic people at all levels of the organization, from entry-level positions to the top ranking executive positions, without regard to communications differences, and these people must not be tokens, but must have legitimate decision-making power. Additionally, Autism Speaks may choose to create a supplementary advisory committee comprised entirely of Autistic people, provided that that body has meaningful decision-making power.

3.) Research priorities must shift toward the needs and desires of Autistic people. Specifically, funds set aside for research must be allocated toward research on topics such as integrated and inclusive education, integrated and supported employment, supported and independent living, access to healthcare, sensory integration issues and therapies or coping mechanisms, augmentative and alternative communication, discrimination in employment and housing, postsecondary and workforce preparation and outcomes, person-centered and individual-directed transition planning, and abuse of Autistic people by caretakers and service providers. Furthermore, research that focuses on identifying the etiology or specific genetic causation of autism, environmental "risk" factors, development of a prenatal screening, or recovery or cure should not be pursued as this is not research that will benefit the millions of Autistic people alive now, many of whom do not want to be cured, including many Autistics with very significant disabilities. Research that focuses on improving quality of life and removing barriers to access should become the only priority.

4.) Materials produced by the organization must only provide accurate, positive, and objective information. Specifically, any fundraising campaigns, public service announcements, informational sheets, or other materials must focus on acceptance and understanding of Autistic people instead of framing our lives as tragedy or pity narratives. Materials must move away from exclusively deficit-based language, fear-mongering statistical comparisons or analogies, or otherwise dehumanizing or othering language. Additionally, Autistic people must be consulted and meaningfully included throughout the development of any fundraising, promotional, or informational materials. Furthermore, Autism Speaks must apologize for previous dehumanizing and offensive language in organization-sponsored public materials, including the rhetoric used in "Autism Every Day," "I Am Autism," and the constant comparisons of the likelihood of being Autistic to the likelihood of a child dying in a car crash, being struck by lightning, or having cancer, diabetes, or AIDS. Additionally, Autism Speaks must repudiate all remarks that appear to lend credence to the debunked vaccine-causation myth.

5.) Advocacy priorities must shift to those accepted and pursued by mainstream disability, disability rights, and self-advocacy organizations. Specifically, advocacy must focus on establishing policies and practices at both the national and local levels that promote equal access and opportunity for Autistic people in education, employment, housing, healthcare, and civic and community life, which is often achieved by varying levels of supports and services appropriate to each individual. Regardless of whether Autism Speaks takes a more "activist" role in this sense, funding allocated toward advocacy must be reviewed and approved by Autistic people. Furthermore, Autism Speaks ought to be supporting measures to end segregated eucation, restraint and seclusion, aversive punishments, inequity or inaccessibility in healthcare, sheltered workshops, or institutionalization.

6.) Autism Speaks must undertake an effort to reform its finances and budget. Specifically, executives and employees must be paid fair wages commiserate with their qualifications and duties, and with consideration that the organization is a non-profit, not a private corporation. As few funds as possible should be allocated toward fundraising, as the majority of funds ought to directly support and benefit Autistic people.

7.) The organization must partner and collaborate with national and local cross-disability and disability organizations in order to promote research, programming, and advocacy that align with the priorities of Autistic people, as expressed by such established organizations as TASH, the Autistic Self Advocacy Network, and the Autism National Committee. Furthermore, the organization must make all effort to educate its employees, members, and volunteers as to both the changed priorities and practices, and the reasoning behind them.

Until all of these things happen, I will never be able to withdraw my indictment of the organization. I am willing to talk to whomever will listen, but I will not forget the repeat offenses that Autism Speaks has accumulated. Autism Speaks has the opportunity to make a sea change in its philosophies, policies, and practices, but a partial reformation will be no reformation.

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