Tuesday, November 18, 2008

Letter to President E. Gordon Gee

On October 12, 2008, Autism Speaks held a walk on the Ohio State University campus, and President Gee presided as the honorary chair. During his speech, Gee claimed, "It [autism] should not exist." A letter to Gee, written by an OSU student with Asperger's, follows.

12 November 2008

E. Gordon Gee, President
205 Bricker Hall
190 North Oval Mall
The Ohio State University
Columbus, OH 43210

Dear President Gee:

I am writing in regards to statements made at the Autism Speaks walk held on campus this past October 12. My name is Melanie Yergeau, and I am a second-year Ph.D. student in English. My area of focus is disability studies, and I have Asperger’s Syndrome, a form of high-functioning autism.

Ohio State has a small but burgeoning community of autistic students, and many of us were dismayed at your call to “cure” autism during the event on October 12. Though several autistics from our campus group were in attendance at the rally, I was not. As with many others on the autism spectrum, I do not feel that Autism Speaks speaks for autistic individuals. I was, however, saddened by The Lantern’s emphasis on one of your remarks at the rally, during which you claimed, “It [autism] should not exist.” Many—and I would argue most—autistics do not want to be cured. Both high- and low-functioning individuals on the spectrum understand autism as their unique way of perceiving the world (e.g., Amanda Baggs, D.J. Savarese). Autism is a part of who I am: remove the autism and you remove me.

I have waited a month to send this letter because, I admit, I am so very close to this subject. However, a non-autistic Master’s student in social work suggested that you might not realize that autistics do attend Ohio State, that more of us enter the university everyday. And in further contemplating this, I realized that perhaps you have been thrown into this autism debate without realizing that it is, indeed, a debate.

Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger’s adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.

As I read articles and listen to reports of the rally from my saddened autistic friends, I’ve noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.

I have written this letter to you personally because I would like to think that the president of the university I attend might not refer to autistics as pitiable people in need of cures and able-bodied heroes, but rather as full and contributing members of the university community. Only when we acknowledge that the conversation on autism must, of necessity, include autistics can we begin to help all those affected by autism to lead productive and fulfilling lives. It is my hope that you might not only speak as a university president on issues of autism, but as a role model for those within the autistic community.


Melanie Yergeau
Department of English
421 Denney Hall
164 W. 17th Ave
Columbus, OH 43210

CC: Brenda Brueggemann, Coordinator of the Disability Studies Program, Department of English

Saturday, November 1, 2008

ASAN Group for Autistic Teens

ASAN has created a new online group for autistic teenagers and would like to invite interested people to participate. More details below:

A new yahoo group has just been created to be open exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. It is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.

Group Rules:
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.

The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.

To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.For more information, contact list moderator Dora Raymaker at dora@aaspireproject.org.

Please pass this information along to any adolescents and teens you know who would be interested!

Wednesday, October 1, 2008

ASAN Coalition Submits Joint Comment

Together with other autism and disability rights organizations, ASAN submitted the following joint comment yesterday on the Interagency Autism Coordinating Committee's draft strategic plan:

The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008

This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum. The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC's decision-making process, research topic selection, research design and research implementation.

The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.

The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:

1. All federally-funded researchers must consider the impact that their research will have on autistic citizens' human rights, their dignity, and the quality of their lives, from prenatal life forward.

Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.

2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.

Currently (as of May 12, 2008), only 1% of NIMH's $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee's "sense of urgency" when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.

For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals' processing strengths and state-of-the-art technology should be pursued.

Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, "We know that behavioral treatments make some difference but it's a relatively small amount of difference."

Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children's' needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.

Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.

3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.

Much research and fundraising language emphasizes "costs to society" and uses the disrespectful rhetoric of "burden." The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because "portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them." We strongly agree.

Similarly, many NIH-funded researchers and staff speak of autism as "a devastating disorder." However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as "impairments," but which, in reality, are often innocuous or compensatory mechanisms.

4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.

Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: "…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results." We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.

Ari Ne'eman
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036

Andrew Imparato
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006

Barbara Trader, MS
Executive Director

Sharisa Joy Kochmeister
Autism National Committee

Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project

Compiled by ASAN Board Member Paula C. Durbin-Westby

Thursday, September 4, 2008

Comments Needed from Self-Advocates

The Autistic Self Advocacy Network is strongly urging autistic self-advocates and allies of our community to submit comments to the U.S. government regarding autism research and services, so that our voices will be heard when the funds are allocated. You can submit a comment regardless of whether you are a U.S. citizen.

The role of the Interagency Autism Coordinating Committee (IACC), created in 2006, is to help formulate the direction of future scientific research about autism in the U.S.

The IACC has indicated its willingness to hear from people on the autistic spectrum by including us in their invitation for comments, and by including an adult on the autistic spectrum on their board.

The IACC is currently asking for comments (Requests for Information) on two different topics. These requests for comments are our chance as individuals on the autistic spectrum to have our voices heard by the IACC. This is our chance to help ensure that future research about autism is scientifically sound, ethical, and of real benefit to people on the spectrum. The number of responses really matters; please respond to the requests if you are able.

Topic: Priority Questions for Supports and Services
Deadline: 19 September, 2008

The IACC would like to know what you consider to be the most important, or highest priority, research questions related to services and supports for people on the autistic spectrum. This includes any high priority questions or concerns related to education, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

This information will be used by the IACC to guide which autism research projects get funding.

To get more information about the request for information, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html

The deadline for comments is 19 September, 2008, so please make your comments prior to that date.

Topic: Comments on Draft of Strategic Plan
Deadline: 30 September, 2008

The IACC has finished drafting a plan for autism research, and is now asking for comments on that plan. The best way for you to let IACC know that you feel their draft plan could be of benefit to individuals on the spectrum is to contact the IACC with your own thoughts on the draft plan.

A summary of what is proposed in the plan is as follows:

+ Children with a higher probability for ASD will be identified by 24 months and receive appropriate assistance.
+ Discover how ASD affects development, which will lead to targeted and personalized interventions.
+ Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.
+ Interventions will be developed that are effective for reducing both core and associated difficulties, for building adaptive skills, and for preventing the disabilities associated with ASD.
+ Communities will implement high quality, evidence-based and cost-effective services and supports across the lifespan for people with ASD.
+ Advances in intervention, education and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.

To get more information about the plan, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html.

The deadline for comments is 30 September, 2008, so please make your comments prior to that date.

Friday, August 15, 2008

R Word

This video, "R Word," is a public service announcement by the Autistic Self Advocacy Network. It was produced by Christschool in response to the offensive language in the movie Tropic Thunder. ASAN is part of a coalition of more than 160 disability rights groups protesting the movie.

Monday, July 21, 2008

ASAN Central Ohio Chapter Forming

We are seeking new members who are interested in creating opportunities for social interaction and community involvement in and around the Columbus area. Our first meeting took place on Friday, July 18th, as a joint meeting with the ASAN Southwest Ohio chapter. We discussed the need for more social and community organizations run for and by autistic people in Central Ohio.

If you are interested in learning more about the Autistic Self Advocacy Network, please contact us at asancentralohio AT live DOT com. We'll be glad to answer any questions that you may have.