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KenG
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12 Nov 2011, 4:46 pm

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Volume 1.5 October 2011

From the Board

We're very pleased with how much ASAN has grown over the past year and with the community's interest in our events and projects. This is an exciting time for us! From our upcoming 5-Year Anniversary Celebration in DC to the December launch of our
symposium at Harvard Law School on Ethical, Legal and Social Issues in Autism research -- along with our ongoing involvement in community based participatory research initiatives such as the AASPIRE Healthcare Toolkit on which ASAN Staff Member Dora Raymaker is one of the principal researchers, we're continuing to expand our horizons as we seek more ways to serve our community.

To keep our supporters better informed, we plan to publish the ASAN Newsletter on a monthly schedule, starting with this issue. We look forward to connecting in greater depth with our readers; and as always, if you have questions or would like to submit artwork, poetry, or other creative material, please contact our newsletter staff. Those who are interested in volunteering as staff writers or editors are welcome too!

We look forward to this opportunity to be in touch more often, and we hope you'll let us know if you have suggestions on how we can further improve the ASAN Newsletter. Our editorial staff, under the leadership of Melody Latimer, our Communications Coordinator, have been working hard to keep the public informed about our activities and are always glad to get feedback.

INVITATION: ASAN Ethics Symposium

On December 10th, ASAN will be holding a symposium on Ethical, Legal and Social Implications of Autism Research at Harvard Law School. The event, conducted in conjunction with the Harvard Law School Project on Disability and the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, is funded by the Administration on Developmental Disabilities.

Topics covered will include prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals, enhancing the effectiveness and inclusivity of Institutional Review Boards, setting diagnostic criteria, and balancing competing concerns of safety and self-determination. Participants will include equal numbers of researchers and self-advocates.

The event will be from 9 AM - 3:30 PM. If you woul like to attend, please RSVP to [email protected].

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Art by Chelsea Boon

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(c) Chelsea Boon

Autistics Speaking Day

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Reminder!
Autistics Speaking Day
November 1, 2011

#ASDay Mission:
To raising Autism awareness and battling negative stereotypes about Autism. To advocate for the inclusion of Autistic people in the community. To offer a forum to broadcast their voices, and to help the messages of Autistic people and non-Autistic allies reach the ears of as many people as possible.

To have your blog included on the list of contributing, please fill out this form.

Like us on Facebook:
http://www.facebook.com/pages/Autistics ... 2960394619

Follow us on Twitter:
http://twitter.com/#!/AutisticsSpeak

Chapter Spotlight

Growth at the national level has helped with growth in chapters as well. Over the past few months, ASAN has added several new chapters including:

ASAN-Syracuse
Syracuse University
Syracuse, NY 13210

ASAN-Seattle
http://www.meetup.com/ASAN-Seattle/

ASAN-Tri-Cities, WA

ASAN-Michigan
http://asanmichigan.blogspot.com

ASAN-Rhode Island
http://www.facebook.com/pages/ASAN-Rhod ... 0387794540

If you are interested in these chapters, please contact their chapter leaders. If you are interested in starting a chapter of your own, please contact Elesia Ashkenazy, Chapter and Outreach Coordinator, for more information.

Navigating College Released

Over the last year, ASAN has been compiling an exciting project that, after months of hard work, has now been published. Our Navigating College guide is a must read for incoming and current Autistic college students. The contributing authors of our guide are all Autistic, and they have composed over 130 pages of invaluable reading material. Nothing About Us Without Us! This document is sure to answer many questions not only for those of us on the spectrum, but also for parents, service providers, and university personnel. We're excited to be releasing this thorough guide that explores a wide variety of topics

With a stellar introduction from Jim Sinclair, who offers excellent advice regarding laws, rights, and responsibilities under the ADA and Section 504, the Navigating College guide kicks off with a bang. Perhaps you've been wondering what laws are on your side when you leave high school and you're no longer covered by IDEA. Or maybe you would like a handy resource that can point you to websites that cover postsecondary education for students with developmental and/or intellectual disabilities. Jim shares years of experience in an easy-to-follow format that is simple to reference.

Looking for accounts from students on the spectrum who have first hand experience as well as tips and wisdom to share? We can help. Navigating College's chapters are all written from the perspective of current or recent autistic college students. Readers can peruse articles tackling topics such as transitioning into higher education, or self-accommodation and sensory regulation. In our Independent Living section, readers will discover firsthand information about living both on and off campus while navigating the unique challenges of being away from home. Our Health and Safety section delves into mental health, wellness, and general safety. Under Self-Advocacy, the difficult issue of ableism awareness is explored. Following that, advocacy and disclosure are covered as crucial subjects for students who wish to learn about and promote acceptance, accommodation, and accessibility. With illustrations throughout and intriguing discussions of complex issues like sexuality, relationships and dorm life, this resource hopes to document the totality of the college experience, both inside and outside the classroom. We're proud of our team of contributors and think every college and university could benefit from their expertise.

To obtain a copy of this important resource, visit the UNH Institute on Disability's Bookstore. You can also download a copy at http://www.NavigatingCollege.org. Don't miss out on this comprehensive document. Help ASAN spread the word by e-mailing those you feel this information could be useful to. Thank you!

Elesia Ashkenazy
National Chapter and Outreach Coordinator

ASAN Protests Autism Speaks in Ohio and California

by Lydia Brown

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On Sunday, October 9, ASAN chapters in Central Ohio and Sacramento protested the Autism Speaks Walk Now for Autism events, with fifteen Autistic individuals and cross-disability allies protesting at the Ohio State campus and five individuals protesting in Sacramento. Protesters at both events emphasized the disparities in Autism Speaks finances. Of just over $10 million given in grants in 2010, Autism Speaks gave barely $50,000 to family services, with the rest of the grants going to research, the bulk of which is research seeking a "cure" for autism rather than applied research that seeks to improve problems facing Autistic people now. Other criticisms cited last year's over $2.5 million spent in salaries for its top-level officers and directors alone (and over $13 million in salaries total), and Autism Speaks's consistent failure to ensure meaningful representation of Autistic people in their leadership either locally or nationally.

At both protests, protesters elicited both positive and negative reactions from walkers. Some walkers swore at protesters, gave middle fingers, or insulted them directly. On the other hand, other walkers took pamphlets about ASAN from the protesters and engaged in dialogue about why Autism Speaks doesn't represent Autistic people.

ASAN hopes to bring attention to the gulf between the objectives of Autism Speaks as an organization and the objectives of the people who participate in its walks in the hopes of helping Autistic people. While Autism Speaks promotes a eugenic agenda that ultimately seeks to eradicate autism through a "cure," some of the walkers stated that they were more concerned with helping Autistic people rather than curing autism. One of the purposes of the protests at Autism Speaks's Walk Now for Autism events is to disseminate information about ASAN and to spread the message that there are organizations in the community that not only give voice to Autistic representatives of the community, but which are actively working on the local basis to promote individual and community resources.

OSU Autism Speaks ProtestWe have continued our protests of Autism Speaks to bring attention to the lack of focus on the needs of Autistic adults in regards to housing, employment, and community inclusion, among other issues -- a lack of focus that Autism Speaks's near-exclusive focus on children's issues serves only to emphasize, further minimizing the voices of Autistic people in determining the allocation of funds raised to help Autistic people. With continued and increased visibility, perhaps the paradigm will shift to allow greater recognition of Autistic advocates' voices in the national conversation about Autistic people.

[youtube]http://www.youtube.com/watch?v=-vj3TxVRbbY[/youtube]

Parent -- Self-Advocate Relations | Where are We?

by Kathryn Bjornstad

A series of dialogues between autistic adults and the non-autistic parents of autistic children has been making a stir on all sides of the autism community. It started when Zoe Gross, an autistic blogger, criticized Rob Russel-Hudson's blog post about ableism in a movie. Rob argued that comments discriminating against the developmentally disabled are harmful because of their impact on the parents of disabled children. Zoe responded that it was inappropriate for him to not include the negative impact of ableist slurs on disabled children. Neither of them was happy with the outcome of the argument, so they agreed to engage in a set of dialogues between non-autistic parents, autistic parents, and other autistic adults at The Thinking Person's Guide to Autism. The dialogues included ten letters between 8 people, six of whom were autistic people. They discussed long-standing problems between non-autistic parents and autistic adults and the feelings of alienation that many autistic adults feel when they try to communicate with non-autistic parents. The dialogues have been the subject of much discussion since, but there is still work to be done.

Julia Bascom, an autistic adult, says that when she tried to speak to the parents of autistic children before, she "did not feel listened to." She adds, "I felt that people were incredibly hostile and/or disingenuous to anyone who wanted to be anything besides a cheerleader or a self-narrating zoo exhibit." She felt that her attempts to explain her position to parents of autistic children were characterized negatively and that she was criticized for pointing out their privilege. "Autistic people are trained for years to identify and communicate our needs," Julia says. "We should be listened to when we can manage to do so."

When asked whose voice he thinks should be most prominent in conversations about autism, Corbin Kramer, who was the subject of abuse for his About.com blog -- which has since been removed, responded, "I think the advocate's voice since it's normally shut out or invaildated in dialogues." He feels "jaded" due to his failed attempts to have discussions with parents, but still hopes that parents and self-advocates can one day work together.

Paula C. Durbin-Westby, an autistic adult and the mother of an autistic child, says that she is treated respectfully by the autistic community, but "non-Autistic parents tend to treat me as a non-parent, and as a 'self-advocate' with a limited role to play." Autistic people treat her both as an autistic person and a parent, but her relationship with non-autistic parents is more complicated. "With the non-autistic groups, it is uncomfortably evident that I am 'not exactly one of them.'"

Zoe Gross, the autistic adult whose argument with a non-disabled parent brought about the Dialogues, is mostly happy with the way they turned out. "I know that there are a lot of people who were exposed to ideas like self-advocacy and privilege for the first time, which I think is a great result," Zoe says. "I see some people recapping the Dialogues as though frustration and hurt feelings was all that happened, and it really wasn't. I think there were a lot of people who learned from it, including me."

As for the importance of autistic voices, Zoe says, "Autistic people know what it's like to be on the spectrum, and no one else can have that firsthand experience. And I'm not saying that non-autistic people should, like, take our word as law on every issue or anything, but there doesn't seem to be a lot of respect for the fact that we're speaking from experience. I think we are the real autism experts."

Advocacy Alerts

ASAN Opposes Medicaid Cuts

The Congressional supercommittee is considering making a deal to cut Medicaid services to people with disabilities and low income Americans. The National Council on Aging along with over 100 organizations including the Autistic Self Advocacy Network are demanding Medicaid Long Term Services and Supports not be cut! Ads will run in newspapers on Oct. 31 and Nov. 1, including in Arizona Republic, Lansing State Journal, Annapolis Capital Gazette, The Olympian, Columbus Dispatch, Nevada Appeal, Boston Globe, and Helena Independent Record.

Have your voice heard! Contact Congress! Let the supercommittee know how you or someone you know depend on these services for survival.

Call 1-888-885-1750!

ACTION ALERT: Help LPA Oppose Repeal of Florida Ban on Dwarf Tossing

Little People of America (LPA) has announced an advocacy campaign to oppose Florida House Bill 4063. Introduced on October 3, 2011, Florida HB 4063 would lift a long standing ban on dwarf tossing. This barbaric, de-humanizing practice was banned in 1989.

The practice not only puts the person engaged in this activity to be injured but allows the dwarf community to be dehumanized by suggestions that people with dwarfism are objects.

"The ban protects the health and welfare of the community," says Leah Smith, Vice President of Public Relations for Little People of America, which serves alongside ASAN in the National Disability Leadership Alliance (NDLA).

Ask Florida's House of Representatives to Withdraw this bill! Sign the LPA petition.

Youth Power! New York Supports Elimination of IEP Diploma

ASAN joins Youth Power! in supporting the proposed regulations by the New York State Education Department phasing out the use of the "IEP Diploma," which is a designation that a student has completed his or her individualized education plan, but which carries no legal or academic status especially when seeking employment.

Under these new regulations, a large number of students who would previously have been on a track to receive the useless IEP Diploma will now be on a track to receive a typical high school diploma that they can use to seek employment or possible post-secondary education.

Please write to the New York State Education Department to express your support for these regulations.

News and Updates

ASAN-Freddie Mac Intern Program

The Autistic Self Advocacy Network is partnering with Freddie Mac to create a more inclusive workplace. Freddie Mac will offer 2-3 paid intern positions in 2012 for recent college graduates on the autism spectrum.

ASAN will be providing Freddie Mac with employer training on accommodation needs and recruiting qualified applicants.

We are currently looking for resumes from recent college graduates on the autism spectrum with the following qualifications:

* Degree or background in mathematics, computer science, statistics, economics, or information technologies
* Experience with statistic modeling software (SAS, SPSS, Stata, R, or SPlus)
* A strong work ethic
* A willingness to work in a collaborative fashion to craft a job description
* Located in the DC Metro area or willingness to relocate

Please send your resume to [email protected]

IACC Call for Nominations

The Office of Autism Research and Coordination (OARC) is conducting, in partnership with The Department of Health and Human Services, the nomination process for the Interagency Autism Coordinating Committee (IACC). Nominations of new public members as well as current members are encouraged.

Those eligible include leaders of major autism spectrum disorder research, advocacy and service organizations, parents or guardians of individuals on the autism spectrum, individuals on the autism spectrum, providers, educators, researchers and other individuals with professional or personal experience with ASD.

Nominations are due by November 30, 2011. For more information and to nominate, please see visit the call for nominations here.

2011 TASH Conference

November 30 - December 3, 2011
Hilton Atlanta
Atlanta, Georgia

The TASH Conference brings together professionals and advocates from every corner of the disability community to learn, share and grow. TASH is one of the oldest progressive disability rights organizations out there and a great place for people from across the ID/DD community to come together. The TASH Conference includes:

* 200+ workshops, sessions and presentations on the latest research, best practices and in-depth discussions
* Networking opportunities for self-advocates, professionals, students and family members to connect with peers and experts
* World-renown speakers leading today's movement for equity, opportunity and inclusion for people with disabilities
* Face-to-face connections with self-advocates, families and professionals in a vibrant, welcoming environment.


2012 Annual Conference on Independent Living

Call for Workshop Proposals


Celebrate NCIL's 30th anniversary at the Annual Conference on Independent Living!

The National Council on Independent Living seeks workshops for the 2012 Annual Conference on the following issues:

* History of NCIL and the Independent Living Movement
* Addressing the Challenges Before Us
* Keeping CILs Going in Today's Atmosphere
* New Leadership - Youth and Diversity
* Best Practices and Innovation in the Core IL Services

As well, NCIL encourages topics based on popular requests from the 2011 conference:

* Access to housing
* Transportation programs and advocacy
* Social media and technology to support Independent Living

Apply by December 2, 2011 to be considered.

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The Autistic Self-Advocacy Network (ASAN) is a non-profit organization run by and for Autistic people, fighting for disability rights in the world of autism. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community.

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_________________
AUsome Conference -- Autistic-run conference in Ireland
https://konfidentkidz.ie/seo/autism-tra ... onference/
AUTSCAPE -- Autistic-run conference and retreat in the UK
http://www.autscape.org/