Autistic Self Advocacy Network, SW Ohio

Blog Closed

2011-04-26T19:59:00.000-04:00

The ASAN Southwest Ohio chapter is currently inactive. As a result, there will be no further entries to this blog. If/when we have a local group in this area again, it will most likely use Meetup, which many ASAN chapters are now using.

Our chapters are expanding in many other areas. If anyone reading this post is interested in joining or starting an ASAN chapter, please contact our Chapter & Outreach Coordinator, Elesia Ashkenazy, who can be reached at eashkenaz@autisticadvocacy.org and will be happy to answer your inquiries.

True Confessions

2010-11-20T20:06:00.003-05:00

By Meg Evans.

I've been foiled at every turn by clever bloggers who have unearthed the deepest darkest secrets of my nefarious plots. My scheme for world domination is no more! Amidst the shattered wreckage of my best-laid plans, there's nothing to be done but to admit the scandalous truth:

I am Bonnie Offit.

More seriously, I have to confess that I've been neglecting both this blog and the ASAN Southwest Ohio chapter. I don't have any good excuses for it; I just got busy with other things and didn't put enough time into keeping them going. Look for more chapter activities to get underway in the new year. In the meanwhile, I'm turning on comment moderation to keep the blog free of spammers and trolls.

Happy holidays to all!

IACC Public Comment Reminder

2010-07-27T16:24:00.002-04:00

The public comment period for the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research closes this Friday, July 30, 2010, as stated in the IACC's reminder notice set forth below. The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. The Autistic Self Advocacy Network encourages public participation in the IACC's proceedings.

From: NIMH IACCPublicInquiries (NIH/NIMH)
Date: Mon, Jul 26, 2010 at 3:20 PM
Subject: The IACC RFI Closes This Week!

Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan Closes This Friday, July 30, 2010

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: http://www.acclaroresearch.com/oarc/2010rfi/. Responses will be accepted until this Friday, July 30, 2010.

NCD Appointment of Ari Ne'eman Confirmed

2010-06-23T02:06:00.002-04:00

The Autistic Self Advocacy Network would like to thank President Obama and the U.S. Senate for the nomination and confirmation of ASAN President Ari Ne'eman to serve as a member of the National Council on Disability (NCD). He will be the first Autistic person to serve as a member of NCD. An independent federal agency, NCD makes recommendations to the President and Congress on issues of importance to Americans with disabilities. To learn more about NCD, go to http://www.ncd.gov

An article about the confirmation can be found on Disability Scoop:

http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/

Disability Representation in Health Care Reform

2010-06-10T12:14:00.002-04:00

In light of the significant barriers faced by people with disabilities with regard to health care access, ASAN has signed a joint letter from cross-disability organizations calling on the U.S. Health Resources and Services Administration to include representation of the cross-disability community in designating medically underserved populations. The letter has been published on the main ASAN website and is reposted below.

June 9, 2010

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

Book Review: Aspergirls by Rudy Simone

2010-06-02T14:22:00.004-04:00

The subtitle of this book is "Empowering Females with Asperger Syndrome," and it is written in a pleasant, conversational style that mixes interview quotes with the author's observations and advice on a wide variety of issues. Rudy Simone expresses a desire to help women on the spectrum feel validated, overcome depression, and become better understood. Most of the chapters, after discussing a specific issue relevant to autistic females, end with advice for "Aspergirls" and for their parents on that issue.

After stating that a love for information is an autistic trait, Simone observes that school often can be difficult because of bullying and loneliness, and that it is important to take action when this happens. She advises dealing with stress and sensory overload as related issues, which can be improved by taking good care of oneself through exercise, a healthy diet, avoiding situations that are likely to be stressful or overloading, and self-calming activities such as rocking and spinning that help to relieve stress.

Females on the spectrum tend to internalize a lot of guilt as a result of misunderstandings, Simone writes, and to feel uncomfortable with gender roles. Puberty brings many challenges, from its physical aspects to the issues of dating and socializing, and can be an age when selective mutism is triggered by increased social anxiety.

University students may tend to push themselves too hard and try to accomplish too much at once. Simone stresses the importance of setting aside enough time to rest and decompress, as well as seeking out disability services and counseling to the extent needed. Getting a degree can make it possible to have a satisfying career in one's field of interest, rather than a stressful and low-paying job. She urges young women to get whatever help they need to make it through college and not to give up.

She identifies self-awareness as crucial in making decisions about marriage and children. Rather than drifting into a conventional family life because of social expectations, the first step should be for a woman to consider carefully what she wants and needs. Finding a compatible partner and knowing what to expect as a mother should not be taken for granted.

Rituals, blunt speech, and differences in expressing emotion often result in misunderstandings. It is not unusual for women on the spectrum to be misdiagnosed and given inappropriate medications. Simone makes clear that she is not opposed to the use of medications by those who find them helpful, but she urges careful evaluation of how well they are working and of whether the benefits outweigh the risks.

Depression involves feeling powerless, she writes, and often can be helped by getting into a better environment and learning more effective coping skills. A more pleasant environment also can help with issues of controlling one's temper. She discusses aging and health concerns, recommending natural foods and supplements while also pointing out that autistics can be very sensitive to dietary changes and that excessive amounts of supplements can cause problems.

The book has a noticeable New Age flavor, mentioning such topics as karma, blocked chi, and psychic powers. Those who enjoy such digressions will probably find it entertaining. Simone has a tendency to overgeneralize at times by discussing particular traits as if they applied uniformly to all women on the spectrum; but this style of writing helps her to build an empathetic rapport with readers who share those traits, and she is being more careful to avoid stereotyping than she has been in the past. Overall, this is an ambitious effort, touching on many different aspects of life as a woman on the autism spectrum, and providing advice that is likely to be helpful for many readers.

Research Study on Healthcare Inequities

2010-05-03T09:29:00.003-04:00

Guest post by Elesia Ashkenazy, ASAN Board Member and Portland, Oregon Chapter Coordinator.

Finally, something about Autistics done with Autistics that might actually help us out!

• Participate in research, not just about Autistics, but with Autistics!
• Have your voice included in research!
• The Gateway Project is recruiting adults over the age of 18 to participate in online studies.
• AASPIRE is conducting a new Gateway study about healthcare inequities.
• Participants may win a $25 Amazon.com gift certificate
• To learn more, visit http://www.aaspire.org/projects/healthcare1.html
• Please share this invitation to participate in research widely!

AASPIRE is currently working on a project called the Gateway Project. Our project serves as a gateway to research that is committed to inclusion, respect, accessibility, and relevance to the community of autistic adults. The Gateway Project includes a series of online studies on topics such as healthcare access and quality, online sense of community and identity, and problem solving. The project is open to individuals with and without disabilities, as well as to individuals on the autistic spectrum.

I have appended our flier for your convenience.

Regards,

Elesia Ashkenazy

ASAN, Board member & Chapter Coordinator

AASPIRE, Community Partner & Community Council Chair

Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in
research WITH autistic adults, not just ABOUT autistic adults.
The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

*encourage the inclusion of autistic adults in matters which directly affect them;

*include autistic adults as equal partners in research about autism;

*answer research questions that are considered relevant by the autistic community;

*use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the AASPIRE the Gateway Project, you can

Go to the Gateway home page at www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora@aaspireproject.org.

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

Secretary Sebelius Appoints Ari Ne'eman to IACC

2010-04-30T11:19:00.003-04:00

The Autistic Self Advocacy Network applauds HHS Secretary Kathleen Sebelius' appointment of ASAN President Ari Ne'eman to the Inter-Agency Autism Coordinating Committee (IACC). The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism. ASAN has given regular public comment at the IACC in the past and looks forward to continuing to be an active part of the IACC process. To learn more about the IACC, go to http://iacc.hhs.gov/.

A news release has been posted on the Health & Human Services website:

http://www.hhs.gov/news/press/2010pres/04/20100430a.html

Book Review: Get Out, Explore, and Have Fun!

2010-04-19T08:43:00.002-04:00

Lisa Jo Rudy, who blogs at autism.about.com, has written an informative and well-organized book full of helpful tips for getting kids on the autism spectrum involved in activities. Her book, entitled Get Out, Explore, and Have Fun! How Families of Children with Autism or Asperger Syndrome Can Get the Most out of Community Activities, begins with a thoughtful discussion of why it is so important for autistic children to be involved in their communities.

In the real world, she points out, relationships usually develop based on shared interests and experiences. Therapeutic settings with artificially planned interactions, however well intended, cannot substitute for the everyday life and relationship lessons that flow from regular participation in the community. Although therapy sessions can be helpful in teaching specific skills, too much time spent in the therapist's office can have the unintended effect of depriving an autistic child of opportunities to take part in ordinary social situations and to learn from them.

Identifying a child's strengths and interests, Rudy suggests, should be the starting point in finding activities at which a child is likely to succeed. For instance, a child who loves Thomas the Tank Engine may also enjoy train museums, scenic train rides, and model train exhibitions. Taking part in such activities can go a long way toward enabling a child to become more confident and able in social settings generally. These experiences may create a strong foundation for a lifetime of pleasant social activities with others who have similar passions, or in some cases may even lead to a related career.

The book is organized into easy-to-follow sections discussing how to get children involved in particular types of activities: sports, youth groups, museums and zoos, faith communities, the arts, camping and the natural world, special-interest clubs, and family outings. Although group leaders and others in positions of authority may not be familiar with autism, this should not deter parents from seeking opportunities for inclusion, Rudy advises. In today's world, an increasing number of programs for children have been specifically designed to be autism-friendly, while others may need only small modifications to accommodate a child's needs. Several of the book's sections end with tip sheets for activity leaders, which are designed to be copied by parents and used as a starting point for discussion of how best to integrate their child into an activity.

Inclusion is not only the right thing to do, Rudy explains; it also has direct financial benefits to community organizations struggling to attract new participants and supporters in a difficult economy. Although some program organizers may initially balk at the perceived cost or difficulty of making their activities more accessible to kids on the spectrum, they may be persuaded to support inclusion more enthusiastically by means of a detailed proposal showing the benefits to be gained. A sample grant proposal for developing an autism-friendly activity is included at the end, along with a list of useful resources for families.

Overall, the book remains clearly focused throughout on the topic of practical solutions to families' inclusion concerns. It is refreshingly free of controversial digressions or emotionally loaded language. While Rudy does not gloss over the difficulties that families may encounter, she consistently maintains an upbeat, can-do attitude and breaks down her advice into small, easily manageable steps for parents who may be feeling overwhelmed and unsure of what to do. This perceptive, well-structured book seems likely to help many families and, in encouraging the development of more autism-friendly activities, to benefit the community as a whole.

House Passes Restraint and Seclusion Bill

2010-03-04T11:32:00.004-05:00

ASAN is pleased to announce that the House of Representatives has taken action to protect students with disabilities from abuse by passing the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) by a vote of 262-153. Many thanks to all who called or visited their representatives to show support for the legislation! The statement below was prepared by the Justice for All Action Network, a coalition of disability rights groups including ASAN.

For Immediate Release:

March 4, 2010

Contact: Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145

Andrew Imparato, American Association of People with Disabilities, (202) 521-4301

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) -- The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

“The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities,” said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

“When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion,” said Durbin-Westby. “We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion."

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

Ohio Parent Survey on Autism and IEP Collaboration

2010-03-02T13:47:00.004-05:00

ASAN Southwest Ohio has received a request to post an announcement and link to a brief online survey on the topic of Autism and IEP Collaboration. In light of the wording of question #9, we would like to clarify that ASAN does not endorse or promote the view that autism has "bio-medical aspects." The survey is intended for parents and guardians who are Ohio residents, who have children on the autism spectrum, and who are active with IEP processes currently.

Autism and IEP Collaboration Survey

Please consider completing a brief online survey targeting parents and guardians and their perceptions of the collaboration process for IEPs. The survey is specifically targeted to those on the Autism Spectrum and reside in Ohio.

This survey is being conducted by a graduate student at the University of Dayton completing her M.Ed. as well as obtaining licensure as an Intervention Specialist.

Please complete the survey by following this link to the Google Docs location.

More Calls Needed on Restraint and Seclusion

2010-02-23T10:19:00.002-05:00

We are continuing to work toward passage of the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247, S. 2860) to protect students from abuse. More Senate co-sponsors are needed -- see the Action Alert below. Please call if you can!

Hello,

On behalf of APRAIS (the Alliance to Prevent Restraint, Aversive Interventions and Seclusion), the Autistic Self Advocacy Network along with other APRAIS organizations is encouraging you to contact your congressional representatives during our National Call-In Day on February 26, 2010 and tell them to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247, S. 2860).

Recently, the House Committee on Education and Labor voted H.R. 4247 out of committee with a vote of 35 to 10. Your hard work has certainly made a difference, but we need your continued efforts to advance this important legislation. Specifically, we need your assistance to get the bill moved to the floor for a full House vote and to obtain Co-sponsors for the Senate version, S. 2860.

Senator Chris Dodd (D-CT) introduced the Preventing Harmful Restraint and Seclusion in Schools Act in the Senate, but we need to increase the number of Senate Co-Sponsors and get this bill out of committee as soon as possible. Once passed, this legislation will provide students with and without disabilities vital protections against abuse in schools.

WHAT YOU CAN DO:

Ask your Congressional Representative to Co-sponsor H.R. 4247 and your Senators to Co-Sponsor S. 2860 on Friday, February 26th!!

To find out the names of your US Senators and Representative, go to http://www.congress.org/
Dial the Capitol Switchboard at 202-224-3121 and ask for the offices of your US Senators and Representative
Ask to speak to the person working on education issues
Identify yourself as a constituent and the organization that you represent (if any)

More Action Needed on Restraint & Seclusion Bill

2010-02-03T09:17:00.006-05:00

The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) is going to committee Thursday, Feb. 4th. More phone calls to representatives are needed immediately to keep strong protections for students in the legislation. There will be a live webcast from the Education and Labor Committee website at 11:00 am Eastern time.

Hello,

We have just been informed that H.R. 4247, the Preventing Harmful Restraint and Seclusion in Schools Act is going to be marked up by the House Education and Labor Committee this coming Thursday. In order to avoid amendments to the legislation that could potentially weaken the bill's ability to protect students, it is important we send a clear message to Congress to pass H.R. 4247 and to keep it strong. This is a crucial period for the legislation and we're urging all of you to call your Representatives before Thursday to tell them to co-sponsor and support the bill.

WHAT YOU CAN DO:

Call your Congressional representative to co-sponsor H.R. 4247. Encourage your friends, family, and coworkers to participate too!

To find out the names of your Representative, visit http://www.congress.org/ and type in your zip code.
The names of your Representatives will be located on the left side of the page under President & Congress.
Call the Capitol Switchboard at (202) 224-3121 and ask to speak to your representative. You can provide them with your zip code if you do not know his or her name.

Identify yourself as a constituent and the organization that you represent (if any).
If you have a restraint and seclusion story, please give them some of the details so they understand why these bills are so important.

Message:

For your Representative: “I am calling to urge (your Representative) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools. HR 4247 is being marked up this Thursday, and your support can help make sure it passes and remains strong. Currently, seventeen states have no protections whatsoever against the use of harmful restraint and seclusion in schools. HR 4247 would create a basic floor of protection and fund teacher training to protect children and keep our schools safe.”

Thank you for your efforts and please keep up the good work! Nothing About Us, Without Us!

Edit: The bill was reported favorably to the full House by a vote of 35-10. Many thanks to everyone who helped by calling their representatives about it!

Restraint & Seclusion National Call-In Day - Contact Your Members of Congress

2010-01-15T16:09:00.004-05:00

Please repost and distribute the announcement below, which explains how to contact your members of Congress on Thursday, January 21st, to ask for their support in preventing abusive restraint and seclusion in the schools.

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

• To find out the names of your US Senators and Representative, click here (link to www.congress.org)
• Ask for the offices of your US Senators and Representative
• Ask to speak to the person working on education issues
• Identify yourself as a constituent and the organization that you represent (if any)

Message: “ I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

Action Alert on Autistic Child Charged with Felony

2010-01-06T13:16:00.005-05:00

As a consequence of a school restraint incident, an 11-year old Autistic boy in Arkansas named Zakhqurey Price has been charged with felony assault. There were no serious injuries, and the incident occurred under circumstances where the use of restraint would not have been legal if recently introduced federal civil rights legislation to protect children in schools had been in effect. Please take action by contacting the school principal and superintendent to inform them of your concerns and, if you can, repost the ASAN Action Alert set forth below.

Hello,

In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now. Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. His grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

Update: The hearing has been rescheduled for April 13th. Click here for more on how you can support Zakh and his family.

Ari Ne'eman Chosen by President Obama for National Council on Disability

2009-12-17T12:08:00.005-05:00

We are pleased to announce that ASAN President Ari Ne'eman has been nominated by President Barack Obama for a position on the National Council on Disability.

The White House
Office of the Press Secretary

For Immediate Release
December 16, 2009

President Obama Announces More Key Administration Posts, 12/16/09

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

•Marie Collins Johns, Deputy Administrator, Small Business Administration
•Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
•Jonathan M. Young, Chair, National Council on Disability
•Carol Jean Reynolds, Member, National Council on Disability
•Fernando Torres-Gil, Member, National Council on Disability
•Chester Alonzo Finn, Member, National Council on Disability
•Gary Blumenthal, Member, National Council on Disability
•Sara Gelser, Member, National Council on Disability
•Ari Ne'eman, Member, National Council on Disability
•Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

http://www.whitehouse.gov/the-press-office/president-obama-announces-more-key-administration-posts-121609

Bios of the nominees are available through the above link.

Volunteers Needed to End School Abuse

2009-12-08T11:26:00.005-05:00

In a bipartisan effort to protect children from dangerous restraint and seclusion in classrooms, new federal legislation will be introduced tomorrow by U.S. Reps. George Miller (D-CA), who is the chairman of the House Education and Labor Committee, and Cathy McMorris Rodgers (R-WA) who is a member of that committee and is the Vice Chair of the House Republican Conference. Their press conference will be webcast live from the Education and Labor Committee website at http://edlabor.house.gov/ at 11:00 AM EST on Wednesday, December 9, 2009.

As shown in a report by the U.S. Government Accountability Office on the inappropriate use of restraint and seclusion in classrooms, many students, including a disproportionate number of children with disabilities, have been injured and in some cases killed by these harmful practices. The federal government has no existing policies to prevent the misuse of restraint and seclusion in schools, and many states also lack adequate regulation and oversight.

ASAN is currently looking for volunteers to help with our advocacy work supporting the passage of legislation to protect students against school abuse. To volunteer, please write to info@autisticadvocacy.org with the subject line "Restraint and seclusion" in your email.

Update, December 9: The Justice for All Action Network has issued a press release supporting the legislation.

Second update: ASAN President Ari Ne'eman was quoted in an Education Week article on the proposed legislation, stating that it "is the first of its kind, going far beyond previous efforts to protect students with disabilities."

Employment Discrimination Testimony Transcript

2009-12-01T17:48:00.002-05:00

Testimony given to the US Equal Employment Opportunity Commission and Department of Justice Civil Rights Division, Town Hall Listening Session on the ADAAA Proposed Regulations, Philadelphia, PA, 10/30/09; Stuart Ishimaru, Acting Chairman of the Equal Employment Opportunity Commission, presiding.

MR. ISHIMARU: Next we have Ari Ne’eman. We look forward to your statement and welcome.

ARI NE’EMAN: Thank you very much and thank you for the chance.

I represent the Autistic Self Advocacy Network, a group of Autistic people speaking for ourselves.

For too long, prior to the passage of the ADA Amendments Act, the approach of addressing discrimination and of viewing the difficulties that those on the autism spectrum face through the context of discrimination rather than merely through the context of impairment or charity was one that was all too often not taken in the autism world. With the passage of the ADA Amendments Act, and the promulgation of regulations implemented with a unique view to building a culture of civil rights that coincides with the growing recognition of the rights of those of us on the autism spectrum, those who desire to speak for themselves and take an active role in how we are viewed in society are trying to address the ways in which the society still poses obstacles.

We're very pleased by the regulations proposed in order to implement the ADA Amendments Act. And we have three broad suggestions in terms of how to improve them for adults and youth on the autism spectrum seeking to find and maintain, and avoid discrimination in the context of, employment.

First, we note that autism was included amongst the list of examples of impairments that will consistently meet the definition of disabilities. We would like to suggest that this be somewhat clarified to broaden the term to autism spectrum disability, rather than just simply autism, seeing as the term autism is commonly understood to refer to five diagnoses in the DSM-IV: Autistic disorder, Asperger syndrome, and others on the autism spectrum. Now, these different diagnoses have somewhat different characteristics, but they all substantially limit communicating, interacting with others and learning. As a matter of fact, in the DSM-V, the next edition, it has been proposed that these diagnoses be combined into a single autism spectrum disorder or autism spectrum disability diagnosis reflecting the fact that for more individuals, the particular autism spectrum disability diagnosis they receive is largely dependent upon what professional they visited or what region of the country they should happen to live in. We believe that clarifying the language to reflect autism spectrum disability will ensure that all autism diagnoses are covered.

Second, we also believe that in respect to the "regarded as" from the symptoms of impairment leading to adverse actions by employers, when this is brought up, that some consideration for the needs of people with invisible disabilities must be addressed in respect to the facts for people with invisible disabilities. One of the greatest difficulties is that our symptoms of impairment are extent to a lesser extent in the general population. We propose that a phrase be added in the section under actions taken based on symptoms of an impairment or based on use of mitigating measures, clarifying that an action taken on the basis of behavioral symptoms also present in the general population also constitutes an action covered under the "regarded as" prong. For example, an individual who is dismissed from a data entry job because he or she does not make eye contact with their supervisor, even if the employer is unaware of the autism spectrum disorder or disability, should still be covered under the "regarded as" prong of this definition.

Third, we also encourage that in respect to section 1630.10, discussing qualification testing and qualification tests, that particular focus be given in the example of a specific example of the ways in which personality tests are administered by many employers. As a matter of fact, a 2003 survey by Management Recruiters International found that 30% of American companies use personality tests, which often act to serve as an obstacle to the full access and the equal consideration in employment and hiring decisions for people with social communication disabilities. As such, we propose the inclusion of an example, to make this section more actionable for those of us with invisible disabilities and for those of us with communication disabilities and focusing on whether or not employees are asked questions as a condition of hiring or relating to social relationships or anxiety in social or other contexts. We feel that this will have an effect on employment discrimination in hiring and promotion for people with invisible disabilities.

Overall, we were extremely pleased by the quality of these regulations. And our community is looking forward to working with the Equal Employment Opportunity Commission and working with the broader civil rights community to help build a culture of civil rights and a culture of ADA enforcement in the autism spectrum disability community and beyond.

Thank you very much for your time and I would be glad to answer any questions.

MR. ISHIMARU: Thank you very much. Very, very helpful. Are there any questions? No? I think you were pretty clear.

MR. ISHIMARU: I actually have one. On the personality tests, do you have a feel of how often they're used and for people with autism spectrum disability issues, are they ... will they always root out people who have the disability or does it happen more often than not?

ARI NE’EMAN: Well, this is something that's a growing concern in the human resources context. And one of the issues is that the use of personality testing is growing significantly, with 30% of American companies utilizing them in one form or another. There's a tremendous amount of diversity in terms of what personality tests are being utilized, the level of science that might back them and there's actually been in the disability context and we know in the context of social communication disabilities, in large part, because of the very issues that led to the passage of the ADA ... very little consideration as to the extent to which these personality tests are focusing on job-related tasks that would be covered by a matter of business necessity. We believe the anecdotal experience of many of our members and those of us on the autism spectrum show that these tests do tend to screen out adults on the autism spectrum. Particularly, because they're being applied in contexts that do not necessarily have those particular skill sets within the essential functions of that job. It's one thing if these tests are being applied in the context of sales force determination. It's another thing to be applied in an engineering context or in a data entry job or in another type of job. So we know that these are relatively widespread and we do know that they tend to, because they are generally focused on the nature of the employee's social interaction, the nature of the employee's private life, the nature of the prospective employee, to screen out many individuals on the autism spectrum and with other social communication disabilities or with other invisible disabilities.

MR. ISHIMARU: Very good. Thank you very much. Very helpful.

ASAN has posted the transcript of this testimony on our main website, and it is also available on the EEOC website. Please feel free to repost it if you so wish.

National Town Hall run by Advancing Futures for Adults with Autism

2009-11-23T13:54:00.003-05:00

This article was written by an autistic self-advocate who attended one of the AFAA National Town Hall meetings on November 13, 2009, and describes his impressions of the event.

Nothing about us without us.

This is what I thought when first reading about the National Town Hall put on for Advancing Futures for Adults with Autism: this meeting must have the voices of autistics heard loud and clear, especially those of us who are adults and are struggling to live and survive in today's society. What an opportunity to address a part of our population that has long been overlooked!

Then I found out that the organizational chairs of the entire production were the New York Center for Autism and Autism Speaks.

Nothing about us without us.

These words again resonated inside me as I saw that Autism Speaks was playing a key role in this production, reminding me of the numerous discriminatory and prejudicial actions they have taken against people with autism (like myself) all in the name of so-called advocacy, awareness and research fundraising. Unfortunately I didn't have the numbers to protest the event and make a major impact with a boycott. I decided to register for the Town Hall – not as a way of being complicit – but as a way to gently and smoothly show the problems with Autism Speaks, their actions, their discrimination, and what people with Autism can do and what they really want.

Attending the event alone would not be enough, so I supplied myself with two fliers. One was an article listing ten misconceptions of autism by Alex Plank, a fellow person with autism and founder of the online community Wrongplanet.net. The other was a fact flier produced by ASAN (Autistic Self Advocacy Network), titled, “Why Autism Speaks Does Not Speak For Us,” which had a concise and current reference list along with its facts.

November 13th, Friday: the day of the Town Hall had finally arrived. I walked in the conference center at the satellite location to find a registration table with an Autism Speaks banner taped to the front. I picked up my name tag – they had listed me in the wrong state; I kept walking. The next person I encountered I'd met before, on a board for a resource center for persons with autism that had its space at a university. Unfortunately, this board has dissolved and the resource center closed for good. What's worse is that she is now working for Autism Speaks, and as I walked up to her, she treated me as though I were 4 years old.

“Oh Hi [Mr. E], How are YOU? (Fine) Do you REMEMBER me? (Yes) Let me take you to your table-”

At this point, I calmly went about my way and went to my table, as I became tired of the 'special' treatment.

I found my place at the table and put down my bag, proceeding to pass out my fliers. No one questioned me, nor did they question if I was a part of the staff leading the event – they happily took the fliers as if it was a part of the Town Hall. Every flier I printed up was given out; none were left over.

Once I sat back down, I looked around and watched as the participants (who were waiting for the Town Hall to start) actually read the fliers I handed to them. This may sound insignificant, but to me it made a huge impact – our message was being read! Before the conference started, I was approached by a few people who stated that they appreciated receiving the fliers, and thanked me for having the courage to bring them to the Town Hall. Only one person spoke in disapproval.

10:20 am: the National Town Hall started. A giant video screen beamed in a live feed from the University of Chicago where the actual Town Hall was centrally held. I was at one of the satellite locations, of which there were 16 total. A few speakers appeared on the screen, including two from Autism Speaks: Lisa Goring, Director of Family Services, and Peter H. Bell, Executive Vice President. Director Goring's speech focused on the topic at hand, which was advancing futures for adults with autism. Executive Vice President Bell, however, decided to tell a personal story about his family's experience with autism and how he and his wife had prepared for having a baby. I found this unnecessary and off track, and so did others, as shown in the faces and reactions of the crowds both at the Town Hall and at the satellite sites.

The program was not run by Autism Speaks (although funded and organized by it) but by AmericaSpeaks, a nonpartisan organization based in Washington, D.C. that uses technology for discussion of public issues. Daniel Clark, an Associate of AmericaSpeaks, came on stage and laid out (vaguely) how the Town Hall would work, and introduced the “Theme Team,” a group of people with laptops set up to consolidate the various data received from around the various sites and “create common themes.”

There were four different points to be voted on, but each table in each site was encouraged to discuss the issue – and at our table, we all agreed that each point's list of strategies needed some modifying. This, of course, would not happen, and was not the point of the Town Hall meeting. The longer it went on, I started to think that this was merely a showcase for Autism Speaks' national agenda for adults with autism, and all who attended were a test group who would 'streamline' the agenda strategies down for them.

I was only half right.

Before each point's list of strategies was a sentence that stated its five-year vision. The central site in Chicago, seemingly desperate to show a person with autism 'participating,' allowed an autistic to read that sentence. Overall, the event had extremely little participation by anyone on the autism spectrum. They did have a 'special' segment for a person with autism who could draw quickly and with proficiency: they asked him to draw an illustration that interpreted what the Town Hall had accomplished that day. Did we get to see any of his work? You can guess the answer: No. This token participation had the feel of a minstrel show put on by persons in the present day: tasteless, ignorant, horribly discriminatory, and wrong in every way.

The Town Hall didn't actually fit a Town Hall-type of meeting; it was more of a discuss-and-vote type of meeting. This event wasn't really devoted to developing or modifying current ideas, but rather reinforcing the current proposals and strategies that were shown to us that day. Change or direct input incorporating original and/or unique ideas was not accepted due to the fact that all content was filtered & watered down by the “Theme Team” into something deemed more “acceptable.”

Now that the Town Hall is over, what did the participants (majority 45-64 year-old white relatives of or program/service providers to a person with autism, with an income of at least $60,000/year and up) actually decide, and what will they do next?

The AFAA (Advancing Futures for Adults with Autism) wants participants to become a “fan” of them on facebook, share resources and stories on their website, spread information about AFAA through word of mouth, and participate in the discussion forums on the site (afaa-us.org). In 2010, AFAA will host an Autism Congress, which I'm sure will represent people who speak for people with autism.

As I left the conference room, nevertheless feeling empowered that people actually read the fliers I passed out, Executive Vice President Peter Bell from Autism Speaks appeared on the screen one last time, demanding 90 seconds from the audience as they began to pick up and leave. I slowly turned around to hear an admonishment cloaked in praise:

“...and for those of you who have autism who attended today, thank you.”

I stood there, shocked at the sheer hypocrisy of the statement compared with the entirety of the Town Hall. Like many autistics, I would have traded all the thank yous in the universe for equal representation and the ability to serve in positions of leadership for groups that claim to speak on our behalf.

Giving out those fliers was my first step towards getting our own voice heard.

NYC Protest on November 17

2009-11-11T12:55:00.010-05:00

For those who will be in the New York City area next week, please consider taking part in ASAN's protest rally against Autism Speaks' exclusionary, stigmatizing, and exploitative practices. Details are set forth in the following announcement by ASAN President Ari Ne'eman:

We'll be gathering at Seventh Avenue and 57th Street, 154 West 57th Street in New York City from 6 PM to 8 PM this coming Tuesday, November 17th, to hold up signs and hand out flyers to Autism Speaks sponsors going in to their New York City concert with Bruce Springsteen and Jerry Seinfeld. Come join us! Please RSVP to aneeman@autisticadvocacy.org or go to the facebook event page here: http://www.facebook.com/event.php?invites&eid=205191180125

Please distribute to your friends, contacts and listservs!

WHY ARE WE DOING THIS?

1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. 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 this is 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.

2. They use fear and stigma to try and raise money off the backs of our people. 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' advertising claims that Autistic people are stolen from our own bodies. 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.

3. 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.

Link to our Joint Letter Against Autism Speaks, signed by over 60 Disability Rights Groups: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61

Update: A news report on the protest, along with a photo slideshow, was published November 19th in the Long Island Autism Examiner.

Here is a video of an Autistic self-advocate explaining the situation to Jerry Seinfeld (first posted by Socrates at The New Republic):

Scholarships Available in Ohio

2009-11-02T10:58:00.006-05:00

The following announcement was forwarded to us by Barb Yavorcik of the Autism Society of Ohio -- thanks!

Stipends and scholarships available for STEM students with disabilities

Ohio's STEM Ability Alliance is recruiting students with disabilities who are majoring in science, technology, engineering and mathematics (STEM) degrees to participate in student learning communities, mentoring, ability advising programs and internship opportunities. Students who are enrolled in OSAA programs are also eligible to apply and compete for Choose Ohio First Scholarships, available Winter Quarter, 2010. Apply now by completing an application at http://nisonger.osu.edu/osaa/. Contact: osaa@osu.edu

Why Autism Speaks Does Not Speak for Us

2009-10-18T18:43:00.012-04:00

The article below is an updated version of a previous post on the ASAN Central Ohio blog. It may be copied for use on protest flyers and other materials.

Autism Speaks and the organizations that merged into it, including the National Alliance for Autism Research, have provided many grants to fund genetic studies and other autism-related research. In 2005, grant recipient Dr. Joseph Buxbaum predicted a prenatal test within 10 years.[1] Autism Speaks' co-founder Suzanne Wright made the organization's eugenic aims equally plain, to "eradicate autism for the sake of future generations."[2] There is a page on Autism Speaks' website supporting the efforts of James Watson and others "to identify autism susceptibility genes."[3] Watson resigned in disgrace from his position as the Chancellor of Cold Spring Harbor Laboratory after making grossly racist remarks,[4] and he has long advocated genetically enhancing children and eugenically exterminating people with cognitive disabilities, which he characterizes as "curing stupidity."[5]

Autism Speaks created a video in 2006 entitled Autism Every Day, which the producer admitted was staged to show negative images.[6] In one horrific scene, a mother described her thoughts of murdering her autistic daughter while the child was actually in the room.[7] Soon afterward, two board members of Autism Speaks said in a magazine interview that they sometimes hoped their autistic son would drown in their backyard pond.[8] Television ads by Autism Speaks have compared the odds of a child being autistic to the odds of a child being struck by lightning, [9] or killed in a car wreck, implying none too subtly that a child might as well be dead as autistic.

Two prominent figures at Autism Speaks, communications executive Alison Tepper Singer [10] and scientific advisor Dr. Eric London,[11] resigned in 2009 because they objected to the organization's complicity in perpetuating the groundless urban legend about vaccines and autism, which has led to reduced vaccination rates and tragic deaths of young children from vaccine-preventable diseases.[12] Dr. London warned bluntly in his resignation letter that "[i]f Autism Speaks' misguided stance continues, there will be more deaths…"[13]

Although Autism Speaks claims to speak for autistic people, it does not have—and never has had—even one autistic person on its board of directors or in its leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals, and others to achieve quality of life and equality of opportunity. Autism Speaks' exclusionary attitude toward people with disabilities is clearly shown in a video entitled Neighbors,[14] which suggests that autistic children will have no friends unless they are taught to suppress their autistic mannerisms by means of behavioral therapy. The underlying message is that people with disabilities cannot be accepted as they are.

Over 60 disability rights organizations have signed a joint letter[15] condemning Autism Speaks' exclusionary practices, use of fear and stereotypes as fundraising tactics, and draining funds from families and communities as shown by Autism Speaks' 2008 annual report,[16] which makes clear that only four percent of the organization's funds go toward providing services to families. Autism Speaks is notorious for high executive salaries.[17] The joint letter expressed community outrage following Autism Speaks' release of a video called I Am Autism,[18] which narrates in a spooky horror-movie tone, "I am autism... I know where you live... if you’re happily married, I will make sure that your marriage fails... I will bankrupt you... I will plot to rob you of your children and your dreams..." and numerous other offensive statements characterizing autistic people as terrible burdens and stolen children.

References:
[1] MSNBC, Feb. 23, 2005; http://www.msnbc.msn.com/id/7013251
[2] Parade Magazine, Jan. 27, 2008; http://www.parade.com//articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything
[3] http://www.autismspeaks.org/inthenews/wrights_cold_spring_harbor.php
[4] http://www.independent.co.uk/news/science/fury-at-dna-pioneers-theory-africans-are-less-intelligent-than-westerners-394898.html
[5] Sun-Herald, March 2, 2003; http://www.smh.com.au/articles/2003/03/01/1046407801233.html
[6] WireTap Magazine, July 11, 2006; http://www.alternet.org/wiretap/38631
[7] http://www.youtube.com/watch?v=C7NTfZzS9b8
[8] Town & Country Magazine, August 2006; http://www.autismspeaks.org/docs/Town_and_Country.pdf
[9] http://www.metacafe.com/watch/1086177/autism_awareness_lightning
[10] Newsweek, Jan. 19, 2009; http://www.newsweek.com/id/179998
[11] Science, July 10, 2009; http://www.sciencemag.org/cgi/content/full/325/5937/135-a?ijkey=vWdUsXAiJkdCE&keytype=ref&siteid=sci
[12] Discover Magazine, June 2009; http://discovermagazine.com/2009/jun/06-why-does-vaccine-autism-controversy-live-on
[13] http://www.autismsciencefoundation.org/ericlondon.html
[14] http://www.youtube.com/watch?v=7rVX_nSLFtg&feature=channel_page
[15] http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61
[16] http://www.autismspeaks.org/docs/Autism_Speaks_Annual_Report_2008.pdf
[17] http://www.disabilityscoop.com/2009/09/10/autism-speaks-pay/4893/
[18] http://www.youtube.com/watch?v=HDdcDlQVYtM

Autism Speaks in Columbus: Let Them Eat Cure

2009-10-12T13:35:00.010-04:00

By Meg Evans, ASAN Southwest Ohio Chapter Director.

ASAN Central Ohio/Ohio State University protested an Autism Speaks walk on the OSU campus on Sunday, October 11th, along with other disability rights advocates objecting to Autism Speaks' lack of self-advocate representation, advertising campaigns that promote fear and stereotypes, and taking funds out of local communities for cure and prevention research while providing very few services. There is a YouTube video of the protest, and more details and photos can be found on the ASAN Central Ohio blog.

I came from the Dayton area to take part in the protest, which was a drive that took me a little more than an hour, and I found several ASAN members and supporters already on the site when I arrived. The protest site was located across the street from the entrance to the parking area for the walk participants, and our group was very visible to people arriving in cars for the event, many of whom looked surprised to see us. Some walkers who arrived on foot stopped to talk with our group about our concerns and to look at our flyers. After the walk began, several people approached us to ask why we were protesting. When I explained to one walker that almost all of the donations raised would be spent by the national Autism Speaks organization on advertising and research, with only four percent being returned to communities for family services, she started nodding and told me that she had been wondering where all the money went.

Image: Protesters hand out flyers at Autism Speaks walk

In light of the widespread lack of availability of services and supports for Autistic people and our families, not only in Ohio but also in other states and throughout the world, we were not expecting anyone to dispute the need for more funding for services. At the end of the walk, however, one Autism Speaks supporter approached our group and argued that it was all right for Autism Speaks to take money out of local communities because Autistic people and our families really didn't need the money anyway. In the tone of a modern-day Marie Antoinette declaring that peasants who had no bread could eat cake, he said that as a parent he had no problem with large amounts of money being spent on cure research because Social Security disability benefits and other programs were available and because "I have a good job." Evidently it had not occurred to him that others might not be as fortunate as his family.

The irony in such an argument struck me as quite glaring indeed, coming so soon after Autism Speaks' release of the widely denounced I Am Autism video, in which a scary voice purporting to represent autism says, "Your money will fall into my hands, and I will bankrupt you for my own self-gain."

Protest in Columbus Against Autism Speaks

2009-10-10T00:29:00.003-04:00

ASAN Central Ohio/Ohio State University will be protesting an Autism Speaks walk on Sunday. This information was crossposted from the ASAN Central Ohio blog.

Please join us as we protest the Autism Speaks walk for autism this Sunday, October 11 from 8:00am to 12:00pm. We'll be meeting at the corner of Fred Taylor Drive and Borror Drive, right by the 4-H Center, and this is where we'll carry out our protest. We are actively looking for volunteers and fellow protesters. Our protest has been sparked by, among other things, Autism Speaks' recent PSA, titled "I Am Autism," which 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. Please join us (even if only for a short while) as we speak back to Autism Speaks and the discrimination that such a campaign perpetuates.

Campus map & driving directions: http://www.osu.edu/map/building.php?area=&building=191

Note on parking: The OSU Event Parking Coordinator is advising ASAN to park behind the 4H Center building in their parking lot. There are about 55-60 spaces available. Fred Taylor Drive (the road in front of the parking lot) will be blocked off at 10 a.m. to prepare for the walk, so everyone will need to be there before that time if they choose to park there. Getting dropped off near by or walking from main campus are the other options for coming later than 10am. Thanks!

Please contact us at asan.ohiostate@gmail.com with questions.

Letter to the Sponsors, Donors and Supporters of Autism Speaks

2009-10-07T10:36:00.003-04:00

This morning, the following letter from over 60 disability rights organizations was sent to numerous national sponsors of Autism Speaks. Individual signatories can show their support by signing the petition at http://www.ipetitions.com/petition/AutismSpeaks. Please feel free to distribute this to your networks.

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

The Arc of the United States

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

National Coalition for Disability Rights/ADA Watch

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 National Coalition of Mental Health Consumer/Survivor Organizations

Feminist Response in Disability Activism (FRIDA)

The ICORS Asperger’s Listserv

International:

Autistic Self-Advocacy Network-Australia

Autism Rights Group Highland (in Scotland, 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)

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 Country Independent Living Resource Center

Elementary Inclusive Education Program at Teachers College, Columbia University

Beyond Compliance Coordinating Committee at Syracuse University

Green Mountain Self-Advocates in Vermont

Advance Youth Leadership Power in Chicago, Illinois

--
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

Disability Community Condemns Autism Speaks

2009-10-07T10:26:00.006-04:00

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

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 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.

“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/

Ari Ne'eman Receives Award

2009-10-03T08:49:00.002-04:00

On Wednesday at UCP's Life Without Limits Economic Forum, which addressed the economic potential of the disability community, ASAN President Ari Ne'eman received the Expanding Horizons Award for his work advocating for rights and dignity for persons on the autism spectrum.

Topics discussed by forum participants included educating business leaders about the disability consumer market, healthcare innovations that benefit people with disabilities, and open sourced development of new accessible technologies.

Taking a Stand for Justice

2009-10-02T00:10:00.003-04:00

Bob Williams, former Commissioner of the Administration on Developmental Disabilities, U.S. Department of Health and Human Services, has written an open letter condemning Autism Speaks' hateful video "I Am Autism" and urging Bruce Springsteen to end his support for Autism Speaks and to contact the Autistic Self Advocacy Network to learn more about how to be an ally to Autistic people. The letter as shown below has been excerpted from an original longer version.

An Open Letter to the Boss:

Dear Bruce:

I am writing to strongly urge you not to perform at the Autism Speaks benefit concert in November and that you withdraw your offer to do so in protest over its horrendous video, “I Am Autism.” Watching it left me and others physically ill and deeply outraged much as a hard core porn video or one filled with racial, homophobic or other bigoted images and tirades would do. Under the supposed guise of promotion a cure of all conditions along the Autism Spectrum, the video strips children and adults on the spectrum naked of their humanity – sowing the worse of stereotypes, fears and low expectations. The message it senselessly projects is one of complete dread and utter disdain – not just of the disability but of those with it as well.

Cuarón and Mann may be masters of their craft, furthermore, they and Autism Speaks are certainly protected by the First Amendment in espousing whatever agenda they choose by whatever means they may choose. As you well know, free speech is a two way street, however. Others of us, therefore, have the same fundamental right and, yes, obligation to denounce the message that autistic people are devoid of the ability to connect – the trait that defines all of us as human.

Increasingly, we are learning just how much this theory once regarded as immutable fact is actually chockfull of holes and based in part or whole on faulty and the most discriminatory of assumptions (see, for example, “The Truth About Autism: Scientists Reconsider What They Think They Know”, Wired Magazine, 02.25.08). We are also just beginning to glimpse the scope and magnitude of the damage and injustices done over the past century or more because such flawed half “scientific” dogmas. So, the question must be asked: What possible good is done by perpetuating them?

Bruce, I have been a fan of yours since the days of Greetings from Asbury Park. As a high school student with significant cerebral palsy in the 70’s I felt alienated, castigated and incommunicado with the world much of the time. Your music became a major force in my life. In your lyrics and the sweet riffs of Clarence, I found my own voice loud, proud and strong. I recognized that far from being a weakness or the problem that my disability, my supposed speechlessness and otherness are among my greatest strengths – essential to what makes me and those like me uniquely and uncategorically human. This is something those so quick to dismiss and denigrate seem unwilling to accept. In your artistry and advocacy for human rights, one line above all others strikes me as central to your message – Walk Tall or Don’t Walk at All. Autistic people are urging you to Walk Tall with them. I urge you to do the same. Please contact Ari Ne'eman, the Founding President of the Autistic Self Advocacy Network to find out how you can join your voice in harmony with theirs to take a stand for justice. Ari can be emailed at aneeman@autisticadvocacy.org

Thank you.

Bob Williams, former Commissioner
Administration on Developmental Disabilities,
U.S. Department of Health and Human Services

Joint Letter Opposing Autism Speaks

2009-10-01T15:15:00.000-04:00

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization's latest offensive and damaging Public Service Announcement, "I am Autism". If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

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.

Regards,

National:
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
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2

International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
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

--

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org/
info@autisticadvocacy.org
732.763.5530

ASAN Protests Against Autism Speaks

2009-09-27T21:31:00.006-04:00

Yesterday ASAN-Portland held a protest at an Autism Speaks walk in response to the "I Am Autism" video, which has infuriated not only Autistic people and our friends and family members, but also disability rights activists across the world with its inexcusable depiction of Autistics as stolen children who ruin their parents' lives.

Portland TV station KOIN 6 reported on the protest as shown in this video:

The station then followed up on the story by interviewing Elesia Ashkenazy, ASAN-Portland Chapter Director. The interview was the lead story on the 11 P.M. local news. You can watch it here:

FOX 12, another local Portland station, also reported on the ASAN protest. This video, which includes a brief statement from Elesia Ashkenazy, also has been made available on YouTube:

Another protest against an Autism Speaks walk will be held in Ohio two weeks from today, on the Ohio State University campus in Columbus. It is expected to draw a larger group and more media coverage than the Portland protest. If you are available to show your support for ASAN on Sunday, October 11 starting at 8:00 AM, please contact Melanie Yergeau at asan.ohiostate@gmail.com to let ASAN-OSU know that you will be there.

News Coverage of Autism Speaks Controversy

2009-09-25T23:31:00.003-04:00

Disability Scoop has just published an article on the widespread condemnation of the "I Am Autism" video by Autism Speaks throughout the cross-disability community. Numerous advocacy organizations either have signed on to a joint letter prepared by ASAN President Ari Ne'eman or are reviewing the letter and considering doing so. The open letter—soon to be released—calls on Autism Speaks' donors, sponsors, and supporters to end their involvement with an organization that uses fear and stigma as fundraising tools and, instead, to find other groups more worthy of their support.

The article further reports on Autism Speaks' defensive response to the criticism of "I Am Autism," which the organization—only days after it presented the video to much fanfare at a highly publicized United Nations event—is now attempting to portray as just a personal expression by two fathers.

Taking Action Against "I Am Autism"

2009-09-24T11:34:00.005-04:00

ASAN is planning further action against Autism Speaks in response to its appalling "I am Autism" video. The following letter to our community from ASAN President Ari Ne'eman details some ways in which you can get involved.

Hello,

As many of you are aware, Autism Speaks sunk to a new low yesterday - even for them! The "I am Autism" campaign repeats the same tired old lies as the NYU Child Study Center's Ransom Notes ads, which our community successfully stopped in 2007, and goes even further, presenting Autistic people as useless burdens on society, on our families and on the world at large. “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,” says the video campaign. Full text is available here. As we did in response to the "Ransom Notes" ads, we are preparing a joint letter from the disability community in response to these horrific statements, which we hope to have available early next week. If you are connected to an organization that might be interested in signing on to such a letter, please e-mail info@autisticadvocacy.org immediately.

In addition, we are encouraging people to act immediately by joining ASAN in writing singer Bruce Springsteen, scheduled to participate in an Autism Speaks fundraiser in November, to end his newfound association with this organization that devalues our lives and speaks about us without us. You can contact Springsteen's publicist at mlaverty@shorefire.com or by phone at 718-522-7171.

Finally, as we mentioned in our initial press release this morning, ASAN Activists and allies are preparing to confront Autism Speaks fundraising in their own communities. If you would be willing to organize a protest in your community, whether you are a self advocate, family member or other ally, please e-mail us at info@autisticadvocacy.org. There has never been a more important time for our community to assert our voice.

Thank you and, as always, Nothing About Us, Without Us!

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org/
info@autisticadvocacy.org
732.763.5530

Autistic Community Condemns Autism Speaks

2009-09-23T11:42:00.004-04:00

ASAN issued the following press release today condemning Autism Speaks' unethical and offensive "I Am Autism" advertising campaign. Please repost and redistribute widely.

Press Contacts:

Ari Ne’eman
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org

FOR IMMEDIATE RELEASE

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign
“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“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,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN). “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive 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, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating 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 living 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,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work 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 the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”

Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html
“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks
“I am Autism Speaks
I will steal your voice and make sure you can never speak for yourself.
I will steal your parents’ money and spend it on a residence on Park Avenue.
I will use demeaning language to degrade, pity and marginalize you.
I have declared war on you.”

Emily (Parent):
http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate):
http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

Self Advocacy at Ohio State University

2009-09-22T17:04:00.002-04:00

By Melanie Yergeau, ASAN-OSU Chapter Director

On the afternoon of Monday, September 21st, the Ohio State chapter of the Autistic Self-Advocacy Network (ASAN) worked a table at the student involvement fair, a community event that boasted over 500 student and community organizations. The members of ASAN-OSU distributed informational handouts during the event, including a flyer entitled "Why Autism Speaks Does Not Speak for Us," authored by Meg Evans of ASAN-Southwest Ohio. Members also solicited signatures for a petition against the upcoming Columbus Walk for Autism Speaks and OSU President E. Gordon Gee's continued support of the walk. In keeping with themes of self-advocacy and protest, on display at the ASAN table was a poster with prominent slogans such as nothing about us without us; we're people, not puzzles; and autistic people can speak for themselves. ASAN-OSU also distributed candy in ziploc bags with ASAN labels attached.

At the event, ASAN-OSU distributed approximately 450 flyers to community members, students, faculty, and staff. The signature tally on the pledge to President Gee has reached 31, not counting ASAN-OSU members, and the chapter anticipates that this number will increase over the next week. Additionally, ASAN-OSU members held many conversations with supporters as well as non-supporters of the neurodiversity movement. For instance, one woman wearing a Walk for Autism shirt, when approached with a flyer, refused to take one and claimed that Autism Speaks needed all available support, implying that ASAN-OSU's efforts are a distraction. Additionally, many women throughout the course of the event -- most of whom were wearing pink Alpha Xi Delta t-shirts -- refused flyers, one even making fun of the ASAN name (claiming that the group misspelled "ASIAN"). Of note is that this particular sorority has chosen autism awareness -- and, more specifically, Autism Speaks -- as its local and national philanthropy project. Several other students, including a number of student athletes, engaged in similar taunts when passing by the ASAN table.

A few autistic individuals, as well as several students with autistic relatives, stopped by the table and expressed relief at ASAN's presence on campus. ASAN-OSU has also begun to develop relationships with other human rights-oriented groups through this event.

In order to continue the efforts made at the involvement fair, ASAN-OSU/Central Ohio has recently begun a new advertising campaign directed toward the Autism Speaks walk. Arrow-shaped flyers bearing slogans such as "Walk if you support eugenics" have been affixed to countless walk recruitment flyers, as can be seen in the attached images. Upcoming events include the group's first fall meeting, which will occur on Thursday, October 1st at 5:45pm at the campus Barnes & Noble. The group will also protest the autism walk on Sunday, October 11 from 8:00am to 12:30pm and is actively looking for volunteers; if you are interested, contact asan.ohiostate@gmail.com for more details. Between now and the walk, the group anticipates distributing flyers and soliciting petition signatures in heavy foot-traffic areas near campus.

Finally, a note of thanks: ASAN members in attendance at the involvement fair were Melanie Yergeau, Hillary Spears, Stephanie Ballam, Whitney Brooks, and faculty advisor Cynthia Selfe. Several other ASAN members contributed to the success of the event, creating flyers and other take-aways, and included Jeffrey Strasser, Noranne Cochran, Justin Rooney, Kristin Rohrbeck, and Natalie A. Finally, many other non-OSU ASAN members made significant contributions in terms of promotional materials and advice, including ASAN President Ari Ne'eman, ASAN-Southwest Ohio director Meg Evans, and ASAN-New England director Andrew De Carlo.

Melanie Yergeau at the ASAN-OSU table

"Walk if you support eugenics" arrow sign

"Walk if you support stereotypes" arrow sign

White House Meeting on Health Reform

2009-09-11T12:55:00.006-04:00

Advocates from the cross-disability community, including Ari Ne'eman, president of the Autistic Self Advocacy Network, recently attended a meeting at the White House with health reform staffers to discuss the proposed inclusion of a Community First Choice Medicaid State Option in the final health reform legislation. The proposal, which is intended to lay the foundation for later enactment of the Community Choice Act, is widely supported in the cross-disability community.

Dan Fisher, Andy Imparato, Ari Ne'eman, Marty Ford, Suellen Galbraith, Bob Williams, Kelly Buckland, and Mike Oxford outside the White House after the health reform meeting.

Photo by Dan Fisher

Billboard Campaign Withdrawn

2009-08-17T10:01:00.007-04:00

ASAN sent a letter to the Autism Society of York, Pennsylvania yesterday after we became aware that ASA-York was running a billboard campaign describing Autistic children as "kidnapped." We explained that such language was harmful because it could increase fear and stigma. Amy Wallace, President of ASA-York, responded promptly to our concerns and those of others in the community, agreeing to remove the billboards. (Edit: Media coverage can be found here.)

A brief message from ASAN President Ari Ne'eman appears below:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community's reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York's President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org/
info@autisticadvocacy.org
732.763.5530

Join the Disability Community Response to the NY Times

2009-08-09T22:12:00.006-04:00

Disability rights activist Stephen Drake of Not Dead Yet wrote the following joint letter, to which ASAN is a signatory, protesting the recent decision of the NY Times Magazine to print an article by Peter Singer that advocated denying health care to people with disabilities. Those who wish to sign the letter individually may do so by email as stated below:

Please read this sign-on letter and consider signing on if you agree with it. If you would like to add your signature to this letter to Gerald Marzorati, Editor of NY Times Magazine send your name and email to jfa@aapd.com by 12 noon EST Monday August 10, 2009.

I apologize for the short notice and the insufficient formatting, but please check out the original at:

http://jfactivist.typepad.com/jfactivist/2009/08/jfaan-response-to-nytimes-article-.html

From the JFA Moderator: The following letter was composed by Not Dead Yet in collaboration with the JFA Action Network with the first signers listed below. We are seeking additional signers. If you would like to add your signature to this letter to Gerald Marzorati, Editor of NY Times Magazine send your name and email to jfa@aapd.com by 12 noon EST Monday August 10, 2009.
In response to Singer rationing:

Dear Mr. Marzorati:

Was it the New York Times Magazine’s intention to assault or diminish the basic tenets of the disability community's civil rights law virtually on the eve of its 19th anniversary? The New York Times Magazine’s decision to publish Peter Singer's latest long essay entitled 'Why We Must Ration Health Care' (7/15/09) less than two weeks before the anniversary of the signing of the Americans with Disabilities Act demonstrates either deliberate malice or reckless disregard of the reality of disability as an important demographic representative of nearly 20% of the American population.

As anyone who has read ‘Why We Must Ration Health Care’ knows, Singer spoke “hypothetically” of assigning a life with quadriplegia as roughly half that of a life without any disability at all. On this “hypothetical” basis, Singer lays out a case for denying health care to people with significant disabilities on the basis that our lives have less value than the lives of nondisabled people.

This is Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.

While this is a bolder assault than we have seen from Professor Singer in the past, it’s hardly surprising. What’s surprising and deeply disturbing is that the NY Times editorial staff have sought him out as a writer on more than one occasion.

To be fair, the NY Times Magazine has published some excellent articles in the past that have covered the disability experience as more than a mere medical issue. The late Harriet McBryde Johnson had several thoughtful articles published in the NY Times Magazine describing the historical oppression directed at people with disabilities, contrasted with the wonderful opportunities that unfold if that oppression is lifted. When Harriet died, many of us were taken aback when the NY Times Magazine editors passed over Harriet’s friends and colleagues to write an end-of-year tribute in the year she died. That honor was bestowed on Professor Singer. Perhaps we should have taken that as a sign of things to come.

Reluctantly, we have to suspect that the NY Times Magazine accepted this piece because of its content, agreeing with Singer that our lives have lessened value and that we represent a drain on the collective economic and health care resources of our country. It’s hard to imagine the NY Times Magazine green-lighting an article that targeted any other group in such a way – e.g. immigrants, the poor, or other groups who have been targeted as scapegoats in the health care debates. Did the editor in charge of publishing this issue even notice that Singer used no factual information at all to support his devaluation of people with disabilities?

We have to wonder what went through the heads of the editorial staff when they thought about the reactions of readers – with or without disabilities – to the large graphic that read “__ YEARS OF A NONDISABLED LIFE IS WORTH __ YEARS OF A DISABLED LIFE.”

Contrast this with Senator Edward Kennedy’s essay on the fight for universal healthcare in the current issue of Newsweek. Talking about people with disabilities he said, in part:

Social justice is often the best economics. We can help disabled Americans who want to live in their homes instead of a nursing home. Simple things can make all the difference, like having the money to install handrails or have someone stop by and help every day.

Obviously, the definitions of justice that Senator Kennedy uses are very different from the definitions favored by Peter Singer and the NY Times Magazine.

Without using the term, Senator Kennedy is also describing the social model of disability. In the traditional medical model of disability, the “problems” of disability are all situated within the person. The medical model defines people with disabilities as having a lower “quality of life” than their nondisabled peers. In reality, most of the limitations put on people with disabilities are socially defined – and can be remediated in the same way. The Americans with Disabilities Act is built on the principles of that social model, acknowledging that disability is a natural part of life and that society has to reflect that reality in an inclusive and supportive way.

The proposed treatment – or nontreatment – of people with disabilities also violates the UN Convention on the Rights of Persons with Disabilities, which was signed by US Ambassador to the United Nations, Susan Rice. She signed the Convention on July 30th at the direction of President Obama. While the Singer essay violates the spirit and vision of the Convention in numerous ways, the most pertinent section of the document is spelled out in Article 25(f), which obligates signatories to “prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.” This is important. Article 4(d) states that countries that have signed the Convention agree to “refrain from engaging in any act or practice that is inconsistent with the present Convention.”

The American disability community, Senator Kennedy and an ever-growing majority of the international community all recognize that public policy has to embrace the inherent equality of the lives of people with disabilities – and public policy must reflect that in practice. The NY Times Magazine and Professor Singer stand opposed to the more progressive voices of social justice, inside and outside of the United States.

We, the undersigned, protest this treatment of people with disabilities within one of the most important public policy debates in our time. The New York Times Magazine 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.

The editorial staff of the New York Times Magazine needs to meet with representatives of disability advocacy groups, with the following goals:

1. The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.
2. If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.
3. Discuss training in the basics of covering disability in news stories – beyond the “human interest” and “medical” angles.
4. Cover the difference between “analysis” and “appealing to bigotry” in public policy discussions.

Urgently,

ADAPT of Montana
American Association of People with Disabilities (AAPD)
Disabilities Network of NYC
Little People of America
MetroWest Center for Independent Living
National Coalition of MH Consumer/Survivor Organizations
National Association of the Deaf
National Council on Independent Living
Not Dead Yet
The Autistic Self Advocacy Network
The Center for Self-Determination
Topeka Independent Living Resource Center

Stephen Drake
Research Analyst
Not Dead Yet
497 State St
Rochester, NY 14608-1642
585-697-1640
http://www.notdeadyet.org

ASAN Represented at White House Ceremony on Disability Rights

2009-07-27T14:28:00.001-04:00

An event celebrating the 19th anniversary of the Americans with Disabilities Act (ADA) was held at the White House on July 25, 2009. ASAN President Ari Ne'eman was one of the invited guests. At the event, President Barack Obama announced that he has instructed United Nations Ambassador Susan Rice to sign the UN Convention on the Rights of Persons with Disabilities. The President also signed a proclamation commemorating the ADA and affirming the rights of people with disabilities.

Photos from the celebration and announcement ceremony can be found on the main ASAN website.

Community Choice Act Update

2009-07-20T21:14:00.003-04:00

ASAN and many other disability rights organizations advocate the prompt passage of the Community Choice Act, which would eliminate the institutional bias in Medicaid and allow people with disabilities who need long term services and supports to live in the community. The letter below, sent to Secretary Sebelius, describes why this legislation is so urgently needed:

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius
Secretary
U.S. Department of Health & Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;

address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;

address the needs of persons who acquire disabilities earlier in life and won't qualify because they cannot secure employment;

provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit;

or meet the needs of persons with significant disabilities who would require more assistance that would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS.

It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.

Sincerely,

Bruce E. Darling
Organizer, ADAPT

Andrew J. Imparato
President and CEO, American Association of People with Disabilities

Ari Ne'eman
President, The Autistic Self Advocacy Network

Brenda Battat
Executive Director, Hearing Loss Association of America

Nancy J. Bloch
Chief Executive Officer, National Association of the Deaf

Kelly Buckland
Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD
Steering Committee Member, National Coalition of Mental Health Consumer Survivor Organizations

Chester Finn
President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability

Book Review: 22 Things a Woman Must Know if She Loves a Man with Asperger's Syndrome

2009-07-11T16:49:00.011-04:00

Author Rudy Simone, in her first foray into the world of self-help books, seeks to address what she perceives as the concerns of women who are in romantic relationships with Autistic men. The cover blurb states that Simone, who gives presentations on autism to various groups, is "drawing on research and personal experiences to inform and advise women with AS partners."

Unfortunately, the book provides very little in the way of citations to peer-reviewed studies and instead relies heavily on stereotypes and unsubstantiated claims from Maxine Aston, who wrote the foreword. Aston asserts, without any valid research to back it up, that being involved in a relationship with an Autistic person causes "Cassandra Affective Deprivation Disorder," to which Aston attributes a variety of ailments from colds to cancer. Aston's claims have been debunked extensively on many Internet sites.

Simone has publicly stated that she is herself on the spectrum, which she learned only recently. When she first began to read about autism, she said in an interview, books by Maxine Aston and Barbara Jacobs were among the first things she found. In light of Simone's lack of a research background that would have enabled her to give their books more critical scrutiny, it is not surprising that like many young Autistics starting a career, Simone was naive and made a poor choice of mentors.

One useful suggestion in 22 Things is that an Autistic person should learn "to trust and respect his own original thinking in many matters." (p. 69) It is to be hoped that Simone will take her own advice in this regard when she pursues future projects. With her friendly, upbeat, and easily understandable communication style, she has the potential to connect well with audiences in both her speaking and writing endeavors.

Disability Rights Protest

2009-06-29T22:44:00.004-04:00

ASAN members will participate in a disability rights protest occurring tomorrow, Tuesday, June 30, in Columbus, Ohio. The group will meet at Barnes & Noble (1598 N. High St.) at 9am, make a few signs and then take the bus down to the state house.

The event has been organized by Sue Hetrick and other disability advocates to protest Ohio's funding of institutions/nursing homes while cutting funding for community-based living services. More details below.

JOIN US AS….

WE PROTEST

OHIO’S FUNDING OF COSTLY INSTITUTIONS/NURSING HOMES WHILE CUTTING MORE ECONOMICAL HOME AND COMMUNITY BASED SUPPORTS AND SERVICES

WE PROTEST

OHIO’S FUNDING FOR SEGREGATION OF PEOPLE WITH DISABILITIES AND THE ELDERLY THAT DENIES CHOICE IN WHERE ONE WORKS, LIVES AND SOCIALIZES

ALL OHIOANS HAVE THE RIGHT TO BE PRODUCTIVE, CONTRIBUTING, INDEPENDENT CITIZENS AND OHIO TAXPAYERS HAVE THE RIGHT TO RESPONSIBLE USE OF PUBLIC DOLLARS

When: Tuesday, June 30
Where: Ohio Statehouse, Third Street Side, Columbus
When: 8:30AM to 5 with “primetime” from 11AM to 2PM

Who: People with Any Disability, the Elderly, families, friends, advocates, and concerned Ohio taxpayers
Bring a chair, blanket, water, lunch, sunscreen or raingear!
Be prepared for a peaceful demonstration, but one that is persistent and vocal!
This is not a RALLY it is a PROTEST!
Note: As this is a grassroots demonstration no one group or individual can or will be responsible for attendant care though attendees are usually willing to support their brothers and sisters in this fight!
Signs are permitted and encouraged however they cannot be attached to sticks or poles!
Contact: Sue Hetrick 866-575-8055

Online Community for Autistic Parents

2009-06-22T14:05:00.004-04:00

Autistic parents who are looking for information and a supportive online community may want to check out AS Parenting, a helpful website that was recently updated after a period of inactivity. The site features a blog with posts on various topics ranging from daily life with the kids to political advocacy, as well as a discussion forum.

AS Parenting is a well designed site and is easy to navigate. The administrator is a Texas mom looking to make some new friends. ASAN Southwest Ohio encourages readers of this blog to stop by and say hello!

Celebrating Autistic Pride Day

2009-06-18T23:09:00.003-04:00

Eight ASAN members, led by ASAN Central Ohio Chapter Director Melanie Yergeau, celebrated Autistic Pride Day 2009 by visiting the Ohio statehouse yesterday and meeting with two state representatives, Rep. Kevin Bacon and Rep. Ted Celeste. The group handed out flyers and briefly explained the goals and work of ASAN.

Several people shared stories about employment, education, and community living supports during the meeting with Rep. Bacon. Melanie Yergeau explained to him that ASAN is very ideologically different from Autism Speaks. Autistic culture also was discussed and compared to other disability communities, such as Deaf culture.

The meeting with Rep. Celeste began with a discussion of the social model of disability and ASAN's participation in cross-disability communities. Rep. Celeste talked about autism insurance and was knowledgeable about ABA and the issue of excluding aversives from coverage. He thanked the group for bringing this issue to his attention. ASAN plans to follow up by sending him relevant literature and studies on aversives.

ASAN's meeting with Rep. Kevin Bacon

ASAN's meeting with Rep. Ted Celeste

ASAN Responds to Dr. Tony Attwood

2009-06-15T09:32:00.001-04:00

The Autistic Self Advocacy Network recently created a petition and a statement to the community regarding the need for Dr. Tony Attwood and Dr. Isabelle Hénault to disassociate themselves from hate groups that use stereotypes and pseudoscience to incite discrimination against Autistic people in family law and relationships. We received a reply from Dr. Attwood consisting only of a form letter, sent to numerous recipients, which wholly failed to address the central issue of his and Dr. Hénault's associations with Maxine Aston and FAAAS and the ongoing harm to Autistics and others with disabilities resulting from these associations. We consider Dr. Attwood's reply grossly inadequate and have set forth a point-by-point response below, with Dr. Attwood's statements in italic formatting.

Dr. Attwood: I would like to state quite clearly that having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent. Indeed, many of the people I know with autism and Asperger’s syndrome as clients and friends are exceptionally good parents and partners. Should a separation occur between partners and a Court examine the issue of custody of children and access then in my opinion, any decisions should be made on the basis of the abilities of each parent and not simply assume that a parent with autism or Asperger’s syndrome is incapable of being a good parent.

ASAN: In addition to the possibility that an Autistic person might be assumed to be automatically incapable of being a good partner and parent, which is the most extreme danger posed by false stereotypes of family violence, these stereotypes have given rise to more subtle forms of discrimination in family law. FAAAS has explicitly urged family law courts and social workers to view Autistic partners and parents as more likely than others to be abusive. An article by Sheila Jennings Linehan on the FAAAS website, entitled Representing Cassandra in Matrimonial Law, characterizes the non-Autistic spouse as "a normal individual subjected to prolonged moral distress" who is not believed when she "accurately predicts future harm to her children." Along with Maxine Aston, the article specifically cites you, Dr. Attwood, as authority for such statements. FAAAS member Harriet Simons presents seminars for social workers in which she makes similar claims. Your continued association with FAAAS suggests that you endorse these false claims and, as such, increases the risk that Autistics and others with neurological disabilities will face discrimination within the family law system.

Dr. Attwood: The term “Cassandra Affective Deprivation Disorder” has been coined by Maxine Aston. It is not an official diagnostic category. I do know that stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression. Effective relationship counselling by a counsellor knowledgeable in the area of autism and Asperger’s syndrome can significantly improve the relationship and help alleviate the signs of depression.

ASAN: By failing to acknowledge that stress within a relationship can contribute to depression for either partner, Dr. Attwood—and by your repeated endorsements of Maxine Aston in books and interviews—you are perpetuating the false claim that being in a relationship with an Autistic partner is psychologically harmful to a non-Autistic partner. There is no scientific basis whatsoever for suggesting that depression affects only the non-Autistic partner or that it is caused by affective deprivation related to the Autistic partner's responses. Several recent research studies specifically examining the affective dimensions of empathy and alexithymia found no impairment in the affective responses of Autistic individuals. (Rogers, Dziobek, Hassenstab, Wolf, & Convit, 2007; Berthoz & Hill, 2005; Silani, Bird, Brindley, Singer, Frith, & Frith, 2008.) Rather, cognitive and linguistic differences lead to misunderstandings. Thus, a presumption that the non-Autistic partner suffers from affective deprivation is unwarranted. The Autistic Self Advocacy Network recommends that those who counsel couples with one Autistic partner should adopt a nonjudgmental approach to identifying and constructively addressing misunderstandings that have occurred.

Dr. Attwood: According to my knowledge, there is no research to suggest that people with autism and Asperger’s syndrome are likely to be violent in a relationship to any greater degree than a typical person in the general population. I do know that a significant proportion of the clients that I see in my clinical practice express to me their concern in their ability to manage their temper but we now have programs such as Cognitive Behaviour Therapy to help those with autism and Asperger’s syndrome manage feelings such as anger. Problems with anger management also occur in the ordinary population but the nature of the treatment of difficulties with anger management must include an appreciation of the different experiences and cognitive profile of someone with an Autism Spectrum Disorder.

ASAN: Research studies have established that Autistics are no more likely to commit violent acts or violent crimes than the general population (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Notwithstanding the scientific evidence, however, FAAAS has repeatedly and falsely stereotyped Autistics as likely to be violent and abusive toward family members and others. When interviewed in July 2008 for a Canwest News Service article, Karen Rodman, founder of FAAAS, asserted that Autistics often lose their temper for no reason. In a local news interview with the Cape Cod Times in February 2007, Rodman argued that Autistic students should be put into segregated schools because their presence purportedly could endanger other students. Dr. Attwood, by continuing to associate with FAAAS and by serving on its Professional Advisory Panel, you are in effect endorsing and lending your credibility to these harmful and prejudiced assertions. In this context, your discussion of clients seeking help for anger problems, who clearly are not a representative sample of the Autistic population as a whole, serves only to muddy the waters further.

Dr. Attwood: I have presented workshops for FAAAS for couples where one of the partners has a diagnosis of Asperger’s syndrome and in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship.

ASAN: In light of the clearly documented history of false stereotypes of violence and psychological harm promoted by FAAAS and other groups associated with the pseudoscientific affective deprivation concept, the Autistic Self Advocacy Network suggests that presenting couples workshops in different venues would be far more likely to result in positive and successful relationships. Dr. Attwood, we therefore reiterate our demands that you promptly disassociate yourself from Maxine Aston, FAAAS, and all similar groups and apologize to our community for the harm done by your past associations with them.

JFAAN White House Meeting

2009-06-14T11:57:00.001-04:00

Leaders of the disability rights advocacy group Justice for All Action Network (JFAAN), including ASAN President Ari Ne'eman, visited the White House recently to meet with senior administration officials regarding disability policy priorities. The issues that were addressed in the meeting included health care, community supports and services, housing, education and school abuse prevention, transportation, and employment.

The JFAAN leaders stressed the importance of working with disability rights groups and self-advocates in making policy decisions. JFAAN is currently organizing policy working groups in the areas of employment policy, health care reform, and grassroots organizing. It also holds weekly policy calls. Those who are interested in participating on the weekly calls or one of the working groups should write to jfa@aapd.com to reach organizer Sarah Peterson.

Autistic Pride Day Event

2009-06-11T15:03:00.004-04:00

The Central Ohio/Ohio State University chapter of the Autistic Self Advocacy Network is planning the following event for Autistic Pride Day 2009. Please RSVP to the email address below if you are interested!

Autistic Pride Day, Wednesday, June 17, 9:15 am-12:00pm

Event.
In recognition of Autistic Pride Day (which typically falls on June 18 of each year) members of the Central Ohio/Ohio State Autistic Self-Advocacy Network will meet with two state representatives to discuss the policy issues that are important to autistic people. We will then hold a picnic/brownbag lunch on the state house lawn. Members of the community are welcome to join us for this event.

RSVP and Contact Information.
Those interested in attending should RSVP by the afternoon of Friday, June 12. Please send an email to asan.ohiostate@gmail.com.

Itinerary.
8:45am For those uncomfortable with getting to the state house on their own: meet Hillary and Melanie at the campus Barnes & Noble. We’ll take the #2 bus down to the state house. (Bring appropriate fare—$1.50 each way.)
9:15am Everyone meet in the lobby of Riffe Tower, 77 S. High St., Columbus, OH. (For those parking, rates are $2/hour.)
9:30am Meeting with Representative Kevin Bacon
10:00am Meeting with Representative Ted Celeste
10:30am Brief tour of the State House11:00am Lunch on the state house lawn! Please bring your own lunch, in a lunch bag or backpack. (If it rains, we’ll eat inside the lobby of Riffe Tower.)12:00pm Head home, or bus back to Barnes & Noble with Hillary and Melanie.

About.
The Autistic Self-Advocacy Network (ASAN) works to advance the autistic culture movement and to improve the representation of the autistic community in public policy deliberations about autism and disability affairs. The Central Ohio chapter of ASAN seeks to provide opportunities for social and community involvement in and around the Columbus area.

Autistic Pride Day (cited from Wikipedia) is a celebration of the neurological diversity of people on the autism spectrum and is about shifting views of autism from “disease” to “difference.” Autistic pride asserts that autistic people have a unique set of characteristics that provide them many rewards and challenges, not unlike their non-autistic peers.

Students with Disabilities Survey

2009-06-09T10:28:00.005-04:00

ASAN Southwest Ohio has received a request for assistance with a survey of students with disabilities in postsecondary education. It is for a master's thesis project, and responses are needed within the week. Please consider responding if you are currently a student, or passing this link along to someone who is. More research and information about the supports and services that lead to successful transition outcomes are greatly needed.

The survey's author, Jeffrey Frinzi, can be reached at jf6709@desales.edu for further discussion. He would like to speak in more depth to those who are interested in sharing their stories.

Hello,

I am a graduate student @ DeSales University in Center Valley, PA. I am working on my master's thesis. My adviser is not requiring me to take a specific approach toward the study. Optimally, a study that investigates the phenomena of students with disabilities transitioning to college should probably employ either qualitative methods or mixed methods (quantitative and qualitative). I am not autistic and I am not a teacher, yet; therefore, I am having no success reaching students with disabilities to take my survey.

I first became familiar with the Autistic Self-Advocacy Network and all the good you have accomplished when my family attended the annual Penn Autism Network Conference a few years ago. Our autistic son is now nineteen and will be attending community college later this year. My wife and I are always reminding him that lifelong education is the key to success and to be proud of his autism. He on the other hand blames his autism and would like to erase it permanently.

It is both his attitude and the work of ASAN that inspired me to return to school at the age of 51 to pursue a master's degree in education with initial certification in special education. I want to help autistic students succeed at postsecondary education. I am currently working on my final research project entitled, "How are students who are classified as learning disabled utilizing learning supports at the postsecondary level?"

I am having a difficult time finding students to take my survey so I can gather data either because the disability services offices will not allow me access to the students or students want to erase their learning disabilities (denial). I have included the link to my survey. If you know of any learning disabled students who would be willing to take my survey you may feel free to forward my link or provide them with my email address. The survey will take only a few minutes. My hope is that a few would be willing to agree to a one on one interview to expound their answers.

I feel that autistic persons should be proud, if not accepting of their autism. But because I am not autistic, and my son is, I have been living this feeling through my son. Once I achieve my master's degree I will be more qualified to speak out about the positive power of autism. I want to help the best way that I can.

PLEASE FORWARD MY LINK TO ANY STUDENTS WITH LEARNING DISABILITIES ATTENDING POSTSECONDARY EDUCATION.

http://spreadsheets.google.com/viewform?formkey=cjFZYzJXVnU5MXNfV0RkZGRfYjR1eEE6MA

Thank you for your time in this matter and keep up the good work,

Jeffrey Frinzi

Amicus Brief Submitted to US Supreme Court

2009-06-01T10:35:00.007-04:00

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is being asked to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court's analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child's IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child's IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

Book Review: Can the World Afford Autistic Spectrum Disorder?

2009-05-28T11:23:00.000-04:00

In discussing nonverbal communication as it pertains to autism, Digby Tantam, who is a professor at the University of Sheffield in the United Kingdom, postulates that the high level of social connectedness in the modern world has made differences in nonverbal communication both more visible and more disabling. Although the book's title seems rather off-putting in light of the historical use of cost arguments to support eugenics, Tantam promptly explains that he is not referring to monetary costs but instead is giving the word 'afford' its secondary meaning of accommodation. He points out that "many adults with Asperger Syndrome are blocked from being economically productive. Often this is not because they are unwilling, or even unable, to work but because society does not create—'afford'—the opportunity for them to do so."

Tantam discusses characteristics of autism that affect nonverbal communication, such as gaze avoidance and differences of voice and gesture, and how they lead to difficulties in perceiving and interpreting social signals. He points out that communication is a two-way process and that an Autistic person not only misunderstands others as a result of these nonverbal communication issues, but also is misunderstood by others.

Drawing an analogy between our society's complex interactions and the Internet, Tantam speculates that modern humans are linked together in an ongoing web of nonverbal communication, which he calls the 'interbrain,' and that it governs social activity on a subconscious level. In his view, an Autistic person has less connections to the 'interbrain' and thus acquires less of the social information that others seem to pick up through a subliminal process, but also is likely to have more potential for independent and original thought. Because of society's strong emphasis on conformity, the potential contributions of Autistics often have been overlooked.

Much of the disability associated with autism, Tantam opines, is the result of anxiety caused by bullying and excessive social pressure to conform, rather than being an intrinsic part of autism. Observing that "the neurotypical brain is not normal in any but the statistical sense," he suggests that our society needs more "effort and thoughtfulness" in finding effective ways to include and empower its Autistic citizens.

He specifically argues against eugenic attempts to dissuade Autistics from having children, stating that "we should not want to reduce human genetic diversity in this way because society gains, rather than loses, by the neurodiversity that results."

The cover art illustrates this message by arranging blue puzzle pieces to form a plus sign, with one orange piece occupying the central position and fitting there perfectly. There's no mistaking the nonverbal meaning in that image: Autistics should not be seen as puzzling oddities or tragic missing pieces, but as valued members of society. This is a much-needed message in a world that so often struggles to accept diversity.

Huffington Post Welcomes Ari Ne'eman

2009-05-24T11:31:00.011-04:00

ASAN President Ari Ne'eman recently was invited to blog at the Huffington Post. His first article, entitled Health Care Reform and the Disability Community, discusses several issues of importance to the disability community that need to be addressed in developing health care reform plans. The first priority should be long-term services and supports, which are necessary to enable many people with disabilities to live in their communities but often are not available because of the institutional bias in Medicaid. Health care disparities are another serious problem requiring more attention and meaningful action. Discrimination has to be stopped in both insurance coverage and the provision of health care.

"With limited resources, Congress will need to make difficult decisions," the article states, "yet discriminating against people with disabilities in the provision of health care services should never be considered an acceptable option."

Readers of the Huffington Post have warmly welcomed Ari Ne'eman with comments that have been overwhelmingly positive. One reader, commenting under the nickname Flavor, complimented the article and then went on to say, "because of your article I went to the [ASAN] site and donated funds to continue for this type of info to continue to be posted for the people to see. Thanks a bunch."

ASAN thanks Flavor, all the people who took the time to read the article and comment on it, and the Huffington Post for being so supportive of our work and of disability rights advocacy!

Newsweek Profiles Ari Ne'eman, Raises Eugenics Issue

2009-05-19T12:17:00.002-04:00

In an article on ASAN President Ari Ne'eman, Newsweek reporter Claudia Kalb discusses the potential eugenic implications of genetic research on autism. This is a significant disability rights issue in light of the increasing number of genetic conditions for which prenatal tests have been developed.

ASAN does not oppose genetic research, as the article makes clear. However, ASAN has raised concerns about the lack of adequate ethical safeguards to ensure that such research is conducted for the benefit of, and always with the meaningful involvement of, the Autistic population as stakeholders. A thorough review of current and proposed genetic research is necessary to implement strong ethical standards and administrative rules to prevent such work from being conducted for eugenic purposes.

You can take part in the online discussion by following the link above and posting a comment on the article. Letters to the editor for the online magazine should be sent to webeditors@newsweek.com and, for the US print edition, letters@newsweek.com is the address.

Carol Grigg of ASPIA Responds to ASAN

2009-05-11T22:57:00.004-04:00

In a recent petition, ASAN called upon clinical psychologists Tony Attwood and Isabelle Hénault to respond to the concerns of the Autistic and cross-disability community by disassociating themselves from groups that falsely portray Autistic partners and parents as abusive, neglectful, or the cause of depression and other illnesses in their family members. The petition cited as an example the Australian support group ASPIA, which had an article on its website that suggested there was a "potential for abuse" by Autistic adults in family relationships.

Neither Dr. Attwood nor Dr. Hénault has yet shown any willingness to take meaningful action in response to our community's concerns, and we intend to continue our efforts to impress upon them the importance of ending all support for hate groups and damaging stereotypes. However, Carol Grigg, the founder of ASPIA, has written to ASAN expressing her desire to create a more balanced website and stating that she supports the rights of all people to be judged on the basis of their actions and treated equally under the law. She has removed the offending "potential for abuse" article and states that she is in the process of reviewing her links. In addition, she wrote:

I would welcome written information or links to good website resources that provide information from the perspective of Autistic adults in relation to managing relationships and parenting, with a particular focus on the communication difficulties.

ASAN places a high priority on identifying and developing resources for use by counselors and others who seek to promote a constructive and stigma-free approach to improving family relationships, recognizing the need for both partners to share responsibility for communication problems. We hope that ASPIA will work productively with us in this endeavor, and we intend to follow up with further discussion of changes and commitments that we want to see.

We would welcome specific recommendations from the Autistic community regarding helpful resources for positive family counseling and partner support, materials that may still need to be removed from the ASPIA website, and other related issues.

A Conversation about Rights

2009-05-08T12:02:00.003-04:00

On Friday, April 17th, 2009, ASAN President Ari Ne'eman delivered the following comments to the National Federation of the Blind's Disability Law Symposium. A recording of the speech is available here on mp3 and a link to the rest of the symposium materials can be found at: http://www.nfb.org/nfb/Law_Symposium.asp

The past half-century has seen a great proliferation in new kinds of conversation about rights. Once primarily relevant in the context of criminal justice and property disputes, rights-based discourses have expanded their scope throughout our society. We have civil rights, human rights, women’s rights, disability rights, immigrant rights, GLBT rights, commercial rights, social rights, privacy rights, animal rights, children’s rights, student rights, parental rights and countless more. Though we may not all agree on the extent or even legitimacy of them, it cannot be disputed that we have broadened our global conception of the role for this concept called rights in our social, legal, economic, policy and societal frameworks. And yet, at the same time as we have updated the role of rights-based conversations in our society, we remain with some very obsolete ideas about where rights come from. This holds us back.

We go out to the world and we tell them in so many ways that it is time for our rights to be realized. We talk about inclusion, we talk about integration, we talk about access, but when we are asked why, our answers are typically phrased in the language of either cost-benefit or desperate need. The one turns our civil rights struggle into a conversation on policy technicalities; the other evokes the very charity-oriented model of disability support that we have been trying to escape. Neither type of response brings the understanding and the knowledge necessary to communicate both the nature and the urgency of our priorities because both talk about rights without talking about where they derive. To legitimize our rights, we have to explain where they are from and so show that they do exist in the ways we talk about.

But where do rights derive? That is the question. The enlightenment political philosophy that our country was based on put forward the idea of a social contract, arrived at by individuals in a state of anarchy, determining to place some of their G-d-given natural rights into a central government for the purpose of securing the remaining ones. This theory carries with it much charm – it fits with our nation’s philosophy of government by the people, for the people, it recognizes and respects rights as inalienable, not temporal whims to be overridden by the first tyrant with a passing fancy. Unfortunately, it is anachronistic and also inaccurate. There has never been a state of nature and our modern ideas of rights go far beyond the negative right protections against government intervention that are all this model allows for. Our community would not be the only one left out by such a limited conception of rights, but we certainly would be one of the first and one of the worst served.

What does that leave us? Where do rights come from? The United States Declaration of Independence says that men are “endowed by their creator with certain unalienable rights”. I believe that to be true – for both men and women, it should be noted. And yet, for our purposes, this does not help us very much. Because the very reason we seek a source for rights in the first place is to help us understand what they are. Barring a theocracy tied to a particular holy text, the belief that rights are divinely inspired does not shed much light on their nature.

You, the people here gathered today, represent some of the most important leaders of a movement devoted to securing and advancing recognition of the rights of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than any other. For generations upon generations the very idea that our population was discriminated against, was deprived of rights was not even on the agenda. Disability was – and in so many senses, still is perceived – as a problem that should be solved by charity and whose persistence could be blamed only on the lack of sufficient humanitarian instincts on the part of the public and the as yet too slow progression of medical science. Disability rights were not on the agenda as far as rights crusaders were concerned – that was a province for those who ministered to the poor unfortunates of the world, the sad accidents, the there but for the grace of G-d go I angels who gave of themselves and found meaning in those tragic burdens.

Then things started to change – not so much with the world, though it is starting, slowly and not yet by any means surely, but with ourselves. We began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious for that which hath been given us. We got activated. We got interested. We got angry. We looked out on the world and found the blame for our misfortune lied not with G-d or with medical defects but with a society that was built up for centuries upon centuries without any thought to the prospect that people like us might live in it. In that moment – and we have each found it at different points in our lives – but in that moment, we saw power abused, we saw injustice – in short, we saw wrongs and so our rights were born. In that moment – that epiphany – the world changed for us, and disability rights were born.

In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.

The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones home? It is a direct outgrowth of our experiences with the British crown and it was only once we had that experience with injustice that we could properly understand what justice looked like. A quick look across history will reveal much the same thing. Our national experience with slavery imprinted us with the right to freedom from forced servitude on the basis of race. The gains of the civil rights movement were not just the result of superior organization and a superb moral cause, they were our nation’s recognition – still partial – of the legacy of lynching, segregation and racism. Anti-Semitism was driven from the country club to the conspiracy theory fringe when the knowledge of the Holocaust came into our homes. Gay rights have advanced because of public awareness of brutal hate crimes such as the torture and murder of Matthew Shepard. To quote Harvard’s Alan Dershowitz, rights come from wrongs.

Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms – the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community having been deprived something else that should justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency – it was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw the ADA as a law about charity – specifically, charity for the most severely impaired – not justice for all those who are being discriminated against.

What does the idea of rights coming from wrongs imply then, if not compensation for having been victimized? It should serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one by stealth. Even as we built tremendous political power and created civil rights laws and social welfare programs, we often did it not by making a credible claim that this is the way the world should be, but by playing on the idea that society should show “compassion” and “pity” for the disabled. This was not entirely our fault. We’re dealing with a media and, as a result, a general public that has not even begun to understand the nature and implications of disability rights. But regardless of why we are here, we still have to deal with the results of having won our legal and political victories while bypassing the social ones that should have come first. The consequence is that our movement and all the progress it has brought is still seen, in most circles, as one of charity or worse still as a stopgap until – be it by eugenics, euthanasia or medical cures – disability is no longer a part of the human experience. This is what Dr. tenBroek was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.

This knowledge places our struggle for recognition of even our victories on the civil rights front in context. Why, almost twenty years after the ADA, do we still see such extensive discrimination and lack of access in terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon and Ransom Notes and countless other examples of unethical fundraising and advertising tactics do we still see media campaigns that devalue our very personhood and cast us as less than human?

The answer is because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees part of the message. They see the demand for rights but not the wrongs from which the rights were born. They look at the individual who uses a wheelchair who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so many well-meaning souls. However, the enforcement of those laws and the implementation of those programs will never be as urgent or as meaningful a priority to them as it is for the “true” civil rights movements.

To them, this is still very much a conversation about need – not injustice. This is not a petty distinction. To have a conversation about justice is to call for a civil rights movement that all members of the human community should feel a moral obligation to join and support. To have a conversation about mere need is to call only for charity conducted mostly by those who usually do not feel that need themselves and have their own ideas about the manner in which it should be fulfilled.

I am reminded, by way of example, of an experience my group, the Autistic Self Advocacy Network, had when leading a protest against offensive advertisements depicting children with disabilities as kidnap victims posted across New York City. The campaign, called “Ransom Notes”, consisted of faux ransom notes from the disabilities that had taken the normal children that were supposedly once in the bodies of now disabled young people. We mobilized thousands of Autistic people and those with other disabilities, brought support from two dozen national and regional disability rights organizations and also garnered some support from sympathetic segments of the parent and professional community. Finally, after thousands of phone calls and e-mails, our story began to hit the media – with the UPI headline, “Ads anger parents of autistic children.”

Of course the story was accurately reported in other news sources and we did succeed in getting the ads withdrawn, but there is a certain sense of frustration over the lack of agency that is allowed our community. Even when every single one of the organizations doing press outreach and explaining our case to the public were consumer-controlled disability rights organizations, the only available paradigm that the media could place this in was one in which we were only passive onlookers as our parents fought on our behalf. Every disability group and most disability rights activists have similar stories.

And so even as we spend more money and more political will on disability issues than we ever have before, we are limited in what we can achieve because the conversation is not one about justice, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived it. It is about charity and dependency and all of those other things that infantilize and marginalize us, controlled by those who speak for us on our behalf and without our permission.

The average member of the public does not know about Buck v. Bell or the tens of thousands of Americans with disabilities or perceived to have disabilities who were involuntarily sterilized as a result of the eugenics movement. They do not know about Willowbrook or the countless Americans with disabilities who have had to live out their whole lives in institutions – much less the many Americans with disabilities who still must suffer this segregation. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. The people in charge of our futures do not understand our history. They don’t see ADAPT calling out, “We Will Ride” or “Free Our People”. They don’t see Deaf President Now at Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks fear-mongering television advertisements or Jenny McCarthy and Jim Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB and a movement like ours. The ideas about dependency run so deep, the charity and victim models are so ingrained, that the response of most reporters and members of the general public to our message is one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. Maybe this is why the disability movement has not yet had our Rodney King or Matthew Shepard moment – since the concept of disabled people as suffering is a natural, normal, expected thing in the eyes of the media and the public, suffering brought on from discrimination or abuse is simply placed into the same, “unfortunate but unavoidable” category as all disability-related misfortunes tend to be.

A perfect example of this can be found in the Supreme Court’s Alabama v. Garrett decision, where the court struck down Congress’s attempt to abrogate the sovereign immunity of the states from damages under ADA lawsuits on the grounds that there was insufficient evidence to “identify a pattern of irrational state discrimination in employment against the disabled." To a slim majority of the Justices of the Supreme Court, disability discrimination is not the result of having built infrastructures for only a portion of the population but a perfectly rational act that the equal protection clause cannot be expected to serve as a remedy for. To quote the Court, “the Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly–and perhaps hardheartedly–hold to job-qualification requirements which do not make allowance for the disabled. If special accommodations for the disabled are to be required, they have to come from positive law and not through the Equal Protection Clause.” Here, once again, disability rights are not matters of equal protection given to full citizens under the law, they are portrayed as matters of charity that good hearted people engage in.

The good news is that this does show us what our next steps should be. It explains the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to the growing Disability History movement, attempting to incorporate the history of people with disabilities and our civil rights struggle into the classroom just as the experiences of other American minority groups has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do have a history of taking control over our own lives and that there is a real and legitimate civil rights movement of, by and for people with disabilities. To quote Ed Roberts, “the greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” Showing the world those parts of our past where we have confronted the wrongs that are being committed against us and restored agency to our community is one way for us to take back our voice.

Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or Autism Speaks go to the public and claim to represent the needs and perspectives of the disability community with their calls for more pity, more segregation, more eugenics and more distance from our dream of being recognized as equal citizens in this society, they perpetrate upon us an obscenity. This obscenity nevertheless has use in that teaches us about how important to the disability rights movement it is for us to take control of our own message and our own community. We must organize not just around laws but around the public conversation on disability, confronting those corporate donors and political infrastructures that give support to these repressive, fear-mongering groups that challenge our right to live in this world. To quote Dr. tenBroek himself, “there are…large and powerful agencies abroad in the land, considerable in number and vast in influence, which remain hostile to our movement in thought, in speech, and in action. Under the guise of professionalism, [they] would perpetuate colonialism. [Their] philosophy is a throwback to the age of the silent client, before the revolution in welfare and civil rights, which converted the client into an active and vocal partner in the programming and dispensing of services. In…[their]…lofty disregard of the organized blind as the voice of those to be served, [they] betray bureaucratic bias that is…[an]…image of the blind client not as a person to be served but as a defective mechanism to be serviced.” The same could be said about many similar groups that speak about us, without us in many disability communities.

Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members and their co-workers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.

I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your time and I look forward to working with all of you to bring this hope into reality.

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530

Not Children: Tony Attwood Still Doesn't Get It

2009-05-01T22:33:00.002-04:00

Some people have the idea that adults with disabilities should be treated as if they were children. This demeaning attitude often manifests itself in claims that people with disabilities are unsuited for, or too immature for, marriage and relationships.

The Autistic Self Advocacy Network is seeking, by way of a petition to Dr. Tony Attwood, to bring attention to the harm done by prejudiced stereotypes that characterize people with disabilities in such terms. Dr. Attwood has a long history of associating with hate groups that spread such stereotypes. In May 2000, he made this statement:

"...if I'm talking to a mother who has say two children, one with Asperger's syndrome, and a husband who I suspect with Aspergers and she says I've got two children, I say well actually you've got three children in some areas..."

Well actually, no, Dr. Attwood, she doesn't; and such prejudices have no place in marital counseling for people on the spectrum, or for anyone else. When so-called support groups encourage people to treat their spouse or partner as childish and incapable because of a disability, and when psychologists suggest that the person with the disability is to blame for all of the problems in the relationship, this is wrong and it has to be stopped. Period.

In his response to ASAN's petition, which we received yesterday, Dr. Attwood continued to assert the baseless claim that "...stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression."

No, Dr. Attwood, being married to an Autistic person does not make someone sick. And our community will not tolerate this libel any longer.

Community Choice Act Needs Support

2009-04-29T11:10:00.004-04:00

The Autistic Self Advocacy Network has created the following Action Alert on Change.org to enable supporters of the Community Choice Act to quickly contact members of Congress and President Obama regarding the importance of the legislation. Please visit ASAN's Action Alert page and show your support!

Pass the Community Choice Act with Comprehensive Health Care Reform!

This action alert is designed to tell the Obama Administration and Congress that health care reform is incomplete without including long term services and supports through passage of the Community Choice Act. The Community Choice Act would reform Medicaid to increase access to community-based services and supports for all Americans. It would provide individuals with disabilities in institutions and nursing homes the option to receive community-based services and help address waiting lists by providing guaranteed access to a community-based benefit within Medicaid. It would also fix the institutional bias in Medicaid, liberating people from institutions and supporting them to live empowered lives within the community.

Petition to Tony Attwood and Isabelle Hénault

2009-04-19T00:16:00.005-04:00

The Autistic Self Advocacy Network has created a petition calling on Dr. Tony Attwood and Dr. Isabelle Hénault, two psychologists widely known for their writings and presentations in the area of Autism, to disassociate themselves from hate groups promoting the groundless and pseudoscientific concept of Cassandra Affective Deprivation Disorder and related stereotypes and libels. These groups, including FAAAS and ASPIA, falsely claim that Autistics and people with neurological disabilities are likely to be violent and to abuse their family members. These groups seek to encourage discrimination against Autistic people in family law and relationships. Such stereotypes have caused people with disabilities to be deprived of parental rights and discriminated against in divorce and child custody cases. Drs. Attwood and Hénault have been regular presenters at Cassandra-related events over the past decade and currently are members of the FAAAS Professional Advisory Panel.

Regardless of your background or interest in Autism or cross-disability issues, we hope that you will join us in signing this petition to help secure the rights of all people to be treated equally under the law. For those who are interested in e-mailing directly, tony@tonyattwood.com.au is the e-mail address for Dr. Attwood and ihenault@internet.uqam.ca is the e-mail address for Dr. Hénault. Also, here is a link to a statement by ASAN President Ari Ne'eman asking the community to sign the petition to Dr. Tony Attwood and Dr. Isabelle Hénault. Thank you for your support in ending stereotypes and discrimination.

No Myths Autism PSA: A Different Kind of Autism Awareness‏

2009-04-16T15:55:00.004-04:00

This April, the "No Myths" public service announcement offers a different kind of autism awareness—one that offers a realistic view of the autistic population, instead of stereotypes and myths. ASAN President Ari Ne'eman has issued the following statement about the PSA and encourages viewers to make others aware of it as well:

ASAN worked with the Dan Marino Foundation and Kent Creative to develop the following autism PSA. Take a look, tell us what you think and please spread the word with blogs and outreach.

Youtube link: http://www.youtube.com/watch?v=Y_dPZDcX_ck
Captioned Version: http://www.overstream.net/view.php?oid=udtvrbt0rlao

Go to http://www.nomyths.org/ to learn more. This PSA is brought to you by the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/), Kent Creative (http://www.kentcreative.com/) and the Dan Marino Foundation (http://www.danmarinofoundation.org/).

About the Public Service Announcement:

The "No Myths" PSA offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way. Ari Ne'eman, president of the Autistic Self Advocacy Network, leads a cast that includes {in order of appearance} Dena Gassner, Ben Liske, and Jacob Pratt.

The Dan Marino Foundation of Weston, FL sponsored the piece, which was filmed by Nashville-based Kent Creative. Jon Kent directed the PSA and Britt Simmons was the Director of Photography.

"No Myths" was filmed inside the Parthenon in Nashville, TN. The Nashville Parthenon, which was built in 1897, is a full-scale replica of the ancient Greek Temple. The two bronze doors, used as a symbol throughout the PSA, weigh 7.5 tons each, and are thought to be the largest pair of matching bronze doors in existence. The producers wish to thank Citation Film Support and the Filmworker's Club of Nashville for their generous support of this project.

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530

Opposing Alarmist Rhetoric

2009-04-14T09:12:00.008-04:00

ASAN Southwest Ohio sent the following statement to the Cincinnati Flying Pig Marathon regarding language used on their website to promote fundraising for autism research:

I am writing to express my concern about alarmist statements on the Cincinnati Marathon website regarding autism, which could have the effect of increasing society's unfounded fear of autistic people and inciting prejudice and discrimination. On your front page, promoting the Run/Walk for Autism, there is a comparison of autism to cancer, diabetes, and AIDS, which misleadingly causes people to view autism as a disease that their family members are at risk of catching. A reader who follows the link to the page promoting the Autism Run/Walk event will be informed that those who "haven't had a close connection with autism" are "fortunate" and that autism is a "horrible epidemic."

In fact, autism is a developmental condition, not a disease; it does not make anyone sick or kill anyone, and it cannot be acquired from contact with autistic people. Comparing autism to deadly diseases such as AIDS can cause uninformed people to shun autistic individuals out of a groundless fear that they or their family members will somehow catch autism. For the same reason, autism should not be characterized as an "epidemic," which is a term that usually refers to an outbreak of contagious disease.

For a more detailed explanation of why such language is harmful to autistic people, please read the public statement by Jim Sinclair and Susan J. Golubock asking those who are concerned about helping the autistic community to oppose the use of alarmist rhetoric about autism.

I personally have a close connection with autism, in that I am an autistic person myself and have several relatives who are also autistic. This will be my seventh year running in the Flying Pig Marathon with my husband, and I find it very offensive that your website would suggest that my existence is horrible and that those who have no close connections with families such as mine are fortunate. Please think about how you would feel if you and your family belonged to a minority group that was being described in such terms, and edit your website accordingly.

Sincerely,

Meg Evans
Autistic Self Advocacy Network, Southwest Ohio

Update: In response to our concerns, the Cincinnati Marathon has edited its front page so that its link to the event's website does not contain the cancer/AIDS analogy or any other language reposted from the event's website. The event's organizer, Janet Leiter of the Autism Society of Greater Cincinnati, can be contacted at info@autismrunwalk.com regarding the language on the event's website.

US Federal Job Opportunities

2009-04-07T09:12:00.002-04:00

Since the election of President Obama, the United States federal government has put more emphasis on expanding disability employment initiatives at the request of the new administration. Existing disability employment policy, new political interest, and stimulus spending are combining to bring about more job opportunities for people with disabilities in the federal government.

ASAN is interested in how to best facilitate access for autistic adults to these new opportunities. If you have some ideas about how the autistic community might go about doing that, please feel free to post and discuss them here.

White House Internships

2009-03-07T18:17:00.002-05:00

On Thursday, March 5th, ASAN joined representatives of several dozen advocacy organizations at a briefing at the White House on upcoming changes to the White House Internship program. The White House Office of Public Liaison is actively interested in recruiting a diverse applicant pool, including individuals with disabilities, to the White House Internship program. They have asked us to forward this to our networks and encourage autistic college students and recent college students to apply. Feel free to forward this announcement.

President Obama Launches White House Internship Program

President Obama today launched the White House Internship Program for his administration and announced that applications are currently being accepted for the summer of 2009. Those selected to participate in the program will gain valuable job experience and an inside look at the life of White House staff while building leadership skills.

“This program will mentor and cultivate young leaders of today and tomorrow and I’m proud that they will have this opportunity to serve,” said President Obama. “I look forward to working with those that are selected to participate and I want to commend all who apply for their desire to help through public service to forge a brighter future for our country.”

In addition to normal office duties, interns will supplement their learning experience by attending a weekly lecture series hosted by senior White House staff, help at White House social events, and volunteer in community service projects.

The 2009 Summer Internship program runs from May 22 to August 14, and the submission deadline is March 22, 2009.

Those interested in applying to the White House Internship Program must be:
• US Citizens
• Eighteen years of age on or before the first day of the internship.
• Enrolled in a college or university (2-4 year institution) or must have graduated from college in the past two years.

Interns will be placed in a departmental office for their internship. Below is a list of departments in the Office of the President and the Office of the Vice President where interns could be placed.

White House Department of Scheduling and Advance
The Office of Cabinet Affairs
The White House Communications Department
The White House Office of Public Liaison and Intergovernmental Affairs
The Office of the First Lady
The White House Office of Legislative Affairs (OLA)
The Office of Political Affairs
The Office of Management and Administration
The Office of White House Counsel
The Domestic Policy Council
The White House Office of Presidential Personnel
Office of the Vice President

More information on the White House Internship Program, including application instructions, can be found at: www.whitehouse.gov/about/internships

Book Review: Michelangelo the Diver

2009-02-13T15:16:00.004-05:00

Dana Commandatore, author of the children's book Michelangelo the Diver, writes in the foreword that her autistic son Michelangelo constantly inspires and challenges her to help him realize his dreams. He loves the ocean and wants to be a scuba diver when he grows up.

The book is about dreams, not about autism; but the underlying message that we all have the potential to realize our dreams is particularly relevant to families with autistic children, who must contend with social pressures that can make it hard to keep dreaming.

With bright and cheerful illustrations by Damian Elwes, the book describes a young boy's dreams of being a diver frolicking with the ocean's creatures and his discovery that dreams sometimes can come true. It is just the right length for a bedtime story, and the theme is one that can inspire both children and their parents to dream of beautiful and amazing things.

Unethical Ad Campaign Action Alert

2009-01-28T16:43:00.003-05:00

The British charity Action for Children is currently showing a television advertisement that depicts an autistic boy, "Dan," as controlled by a monster that causes him to "lash out." The ad presents a harmful and misleading view of the autistic population by suggesting that Dan's autism is monstrous, that violent behavior is characteristic of autism, and that there is a non-autistic child somewhere inside the monster who needs to be rescued.

To send letters to the charity and to British authorities protesting this unethical ad campaign, visit the Action for Children Unethical Ad Campaign Alert on ASAN's action page at Change.org. The page provides a basic letter that can be personalized to express the writer's individual views.

Update: The ad has been withdrawn, thanks to all who wrote to object.

Disability Recommendations for Obama

2009-01-16T10:18:00.002-05:00

A coalition of disability advocacy organizations, including ASAN, has presented policy recommendations to the incoming Obama administration on disability issues:

Disability Groups Send Recommendations to Obama

Dear President-elect Obama,

Congratulations on capturing the hearts, minds, and hopes of our nation! As grassroots, community-based, consumer-controlled disability organizations, which collectively represent over 50 million Americans with the full spectrum of disabilities, we look forward to working with you and your administration to make cost-effective policy changes to enhance the lives of and restore the civil liberties Americans with disabilities.

Attached you will find nine summaries of the top policy issues facing Americans with disabilities. Taking action on your commitment and these policy measures will not only benefit citizens with disabilities, our nation’s wounded warriors, and the ever-growing aging population, it will benefit all Americans and save our government millions of dollars as individuals with disabilities become full participants in society.

They include:

· Employment: Reversing the persistently high percentages of people with disabilities who are not working but are ready, willing and able to work;

· Education: Increasing access and opportunities for physical activity, and improving quality;

· Health Care: Improving access and decreasing disparities and inequities;

· Home and Community-based Services (HCBS): Promoting effective community-based services as alternatives to costly nursing homes and other institutions and increase the FMAP to states;

· Disability Research: Promoting a quality of life and participation-based research agenda;

· Civil Rights: Reinvigorating civil rights enforcement, extending access requirements to new technologies, and continuing to restore protections stripped away by hostile courts;

· Human Rights: Protecting human rights of individuals with disabilities at home and abroad;

· Emergency Preparedness, Response and Recovery Needs: Planning, coordinating, and providing resources to support people with disabilities before, during, and after a crisis; and

· Genetic Science and Technology: Promoting ethical use of new technologies.

Like you, we stand and sit on the shoulders of so many who have come before us. As our nation approaches the 20th anniversary of the Americans with Disabilities Act in 2010, we embrace the disability rights principle, “Nothing About Us, Without Us.” For too long others claimed the need to speak for us, but no other group – professionals or relatives – speak for us.

Additionally, we urge you to embrace the fundamental principles for sustainable change, which are essential elements to building healthy, resilient, empowered communities. As you move forward with deliberate speed and consideration, we urge your administration to:

· Provide oversight of federal agency public policy, regulatory, and enforcement actions, and collaborate with consumer and community-based disability organizations as partners to better serve the ever-expanding population of more than 50 million Americans with disabilities;

· Hire qualified professionals with disabilities, who have expertise in policy areas, throughout the administration, including a Special Assistant to the President on Disability Policy;

· Include individuals with disabilities in policy formation in all areas addressed by the administration, and integrate representatives of our community on all advisory boards of all major agencies;

· Provide services that serve people with disabilities across the life span, from cradle to grave, and all those with increased needs for health care, health promotion, and long-term services and community-based supports;

· Incorporate consumer-directed services and include consumers in policy development;

· Embrace the disability experience as part of culturally competent policy and diversity at all levels of planning, policy formulation, implementation, and evaluation; and

· Focus on “universal design” as a cost-effective innovative way to enhance the quality of life and level of participation of all Americans in community life and incorporate it into infrastructure changes in the economic stimulus package so we upgrade the infrastructure for all to use;

Thank you for your support of the need for the federal government to be “diligent about making sure the states enforce the rights affirmed by the Olmstead decision.” Enabling people with disabilities to live independently in their own homes and communities, rather than being forced into costly Medicaid-funded nursing homes and other institutions will ensure civil liberties, enhance the quality of life and full participation of all Americans by creating stronger, sustainable communities of inclusion and acceptance to honor the 10th Anniversary of the Olmstead decision.

As a community of individuals with disabilities, we ask for nothing more than what other Americans expect and already have. We seek inclusion. We seek a voice for the disability rights message in the change you create. As you create more jobs for Americans, include jobs for Americans with disabilities. As you improve education for America’s students, include students with disabilities. As you improve the healthcare system, include the healthcare needs of individuals with disabilities. As you restore civil rights to Americans, include the civil rights of individuals with disabilities. To paraphrase your now immortal words, – We are not a nation of disabled and non-disabled Americans. We are the United States of America.

We stand ready to work with you and look forward to an opportunity to discuss our priorities with you personally in the coming months.

Sincerely,

American Association of People with Disabilities (AAPD)

Access Living

American Disabled for Attendant Programs Today (ADAPT)

Autistic Self Advocacy Network

Boston Center for Independent Living (BCIL)

California Foundation for Independent Living Centers (CFILC)

Disability Rights Education and Defense Fund (DREDF)

Generations Ahead

Little People of America

Metro-West Center for Independent Living (MWCIL)

National Association of the Deaf (NAD)

National Coalition for Disability Rights (NCDR)

National Coalition of Mental Health Consumer Survivor Organizations

National Council on Independent Living (NCIL)

National Empowerment Center

National Federation of the Blind (NFB)

Self Advocates Becoming Empowered (SABE)

Special Olympics

Texas State Independent Living Council (TX SILC)

World Institute on Disability (WID)

For Policy Recommendations on each policy issue click links above

Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Workplace Accommodations

2009-01-10T19:56:00.005-05:00

Dayton attorney Matthew D. Stokely of the law firm Altick & Corwin recently gave a presentation on the 2008 amendments to the Americans with Disabilities Act, which will provide much more protection from disability discrimination in America's workplaces. Mr. Stokely noted that the more expansive language in the amended act will benefit workers with developmental disabilities, who filed very few charges of discrimination under the previous version of the law, and that many people are still uncertain as to the specifics of how to provide accommodations for such workers.

ASAN Southwest Ohio contacted Mr. Stokely to offer assistance in advising his employer clients on ways to provide accommodations for workers with developmental disabilities. In many instances, such a worker may need an adjustment to the workplace environment in order to be more productive and comfortable. For example, an autistic worker may be very productive in a quiet location with minimal distraction but is likely to have difficulty focusing in a busy office with a great deal of conversation and interruption. Accommodations for workers with developmental disabilities often are easy to implement, at little or no cost to the employer.

Mr. Stokely replied that he appreciated the email and would be happy to discuss such matters. In addition, he mentioned that he also represents individuals in employment discrimination matters. His contact information is listed below, for those who may be interested:

Matthew D. Stokely
Altick & Corwin Co., LPA
1700 One South Main St.
Dayton, OH 45402
937-223-1201
stokelym@altickcorwin.com

Edit: Here is a link (thanks to Dora at the Change.org autism blog) with useful suggestions for accommodation of autistic workers:
http://www.communityinclusion.org/article.php?article_id=266

Recommendations for the Obama Transition Team‏

2009-01-06T16:01:00.003-05:00

ASAN has presented recommendations to the incoming Obama administration regarding policy priorities for autism issues. A statement by ASAN President Ari Ne'eman discussing these recommendations is posted below:

Hello,

This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.

Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.
Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530

Ideas for Change

2008-12-30T11:04:00.002-05:00

ASAN Southwest Ohio would like to encourage autistic self-advocates to participate in an online competition sponsored by Change.org to present ideas for change to the new presidential administration and Congress.

Tomorrow, Wednesday the 31st of December, is the last day for voting. There are several proposed ideas that would be useful to autistic citizens, including the following:

Fully Fund Medicaid Waivers for the Developmentally Disabled
Replace No Child Left Behind With a Strong Education Policy
Independence and Services for Disabilities and Autism

You must register and sign in with a Change.org account in order to vote in the competition.

Health Insurance in Ohio

2008-12-11T16:34:00.004-05:00

In today's difficult economy, many people are finding it hard to get or keep jobs that provide health insurance. A mother recently contacted ASAN Southwest Ohio with an inquiry regarding insurance options for her autistic son, who was working part-time in a position that did not provide health insurance. He was about to turn 19 years old, which was the age cutoff for dependent coverage under the mother's health policy.

We provided information about Ohio's Medicaid health insurance program for workers with disabilities. Ohio has a buy-in program that was created to enable Ohioans with disabilities to work and still have access to Medicaid health care coverage. The program covers both part-time workers and full-time workers. Depending on a worker's income, premium payments may or may not be required.

In addition, we advised her to check with her health insurance company to find out if her policy allowed continuing coverage for adult children with disabilities after the usual age cutoff.

ASAN Teen Group

2008-11-01T09:47:00.006-04:00

ASAN has announced the formation of a new online group for autistic teenagers, to be moderated by Dora Raymaker of ASAN's Oregon chapter:

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!

Presidential Candidates' Disability Positions

2008-10-16T17:08:00.013-04:00

With the presidential election less than three weeks away, it is vital that Ohioans and other voters have accurate information concerning the candidates' positions. Accordingly, ASAN Southwest Ohio has contacted the Ohio Legal Rights Service, a state protection and advocacy agency for people with disabilities, regarding the need to correct an error in a chart prepared by the agency that compares the presidential candidates' positions on disability-related issues.

The chart incorrectly lists universal prenatal screening for autism among the Obama campaign's positions. In fact, there is no prenatal test for autism, and Sen. Obama does not advocate funding the development of such a test. The Obama campaign's position paper on autism calls for universal screening of two-year-old children.

The chart accurately identifies several significant policy differences between the candidates, including their positions on making community services available to people with disabilities. Sen. Obama is a co-sponsor of the Community Choice Act and of the Community Living Assistance, Services and Supports (CLASS) Act, whereas Sen. McCain is opposed to both.

More information regarding Sen. Obama's disability platform can be found at http://www.barackobama.com/issues/disabilities. Sen. Obama's campaign released this plan last year. No comparable position statements have been provided by Sen. McCain's campaign.

The candidates' positions were recently discussed at a Disability Forum in Athens, Ohio on October 12th. No representatives of Sen. McCain's campaign attended the event. Doug Rogers, a disability vote organizer for Sen. Obama's campaign, was present. Donna M. Jones, Sen. McCain's national coordinator for disability issues, sent an e-mail to one of the event organizers explaining that Sen. McCain's campaign does not currently have a disability policy. The e-mail, which was publicly read at the event, stated that no further information was available on when Sen. McCain's campaign might be releasing a platform discussing issues that relate to people with disabilities.

Update: The Ohio Legal Rights Service has corrected the error in its candidate positions chart.

ASAN Coalition Comments on IACC Draft Plan

2008-10-01T11:26:00.006-04:00

ASAN and other autism and disability rights organizations submitted the following joint comment yesterday to the Interagency Autism Coordinating Committee:

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
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530

Andrew Imparato
President
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd-dc.org/

Barbara Trader, MS
Executive Director
TASH
http://www.tash.org/

Sharisa Joy Kochmeister
President
Autism National Committee
http://www.autcom.org/

Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/

Compiled by ASAN Board Member Paula C. Durbin-Westby

Another IACC Reminder

2008-09-30T10:48:00.004-04:00

Today is the deadline for comments on the draft Strategic Plan prepared by the Interagency Autism Coordinating Committee (IACC) for autism research.

It is important that the IACC hear from as many of us as possible! Sullivan has prepared a quick and easy form for submitting your comments, with helpful suggestions for points of interest to autistic self-advocates and other neurodiversity supporters. If you have not yet responded, please take a few minutes to read the form and submit your suggestions for U.S. government autism research priorities. You need not include a detailed discussion in each section, if you don't have the time; what matters is to get our perspective across.

Talking Points for IACC Comments

2008-09-17T10:56:00.006-04:00

ASAN would like to remind the autistic community of the upcoming deadline for comments to the Interagency Autism Coordinating Committee (IACC). We are asking people to write and send comments to the IACC and, if possible, also post your comments on blogs, forums, lists, etc., in the autistic community. Here is a list of helpful talking points prepared to assist our advocates in putting together comments. Many thanks to Paula of ASAN Virginia for her time and effort!

Hello,

Below is a document of considerable importance. Right now, the Interagency Autism Coordinating Committee is seeking public comment on issues relating to service-delivery. In our conversations with NIMH, we've heard a considerable willingness to move closer towards our position, if supported by a sufficiently strong public comment. The deadline on this is this coming Friday, the 19th. If people would be willing to post this on their blogs and also post their personal e-mails to NIMH on their blogs, we'd appreciate the help in turning people out to this. The initial version of this that has gone out on listservs and so on did not include the contact info to send the public comments to - an error on our part - but we've added it here. People should direct their comments, stories and so on to iaccservices@mail.nih.gov by September 19th, 2008.

More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html. I'd also like to add that this is the first of two public comments in relation to the IACC that will be due this month - we'll be sending out a primer on the second call for comments on the research Strategic Plan that will be due on the 30th. I have to stress here that volume is a major priority in what we want as far as responses go - we want lots of them and from lots of people. You don't need extensive citations or anything of that nature - just send something expressing your support for quality of life, communication and similarly important research priorities. This is a top priority for us and we hope you can help us bring out our population - again, the quantity of our response will indicate to NIMH the extent to which the neurodiversity/autistic self-advocacy community should be viewed as a major stakeholder.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530

ASAN BACKGROUND AND TALKING POINTS ON IACC REQUEST FOR INFORMATION ON SUPPORTS AND SERVICES

BACKGROUND:

The Interagency Autism Coordinating Committee (IACC) has put out a Request for Information (RFI) to seek input from stakeholders (those interested in autism), including autistic individuals, about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

The RFI is due no later than Sept. 19, 2008, seven days from now. People should direct their comments to iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html.

This RFI provides an excellent opportunity for self-advocates and allies to make our voices heard. Members of the IACC are very interested in hearing from individuals on the autism spectrum. They've heard extensively from the anti-vaccine crowd, from parents, experts, researchers, and from people on the autism spectrum.

More input from autistic adults at this point, when the IACC is coming close to finalizing a budget and mission statement for the Strategic Plan, will mean more attention to the issues we consider to be most important.

The focus of this particular RFI on services and supports is an area that many autistic adults have much to say about; here is a chance to say it directly to the committee that will be allocating resources to various areas. Currently, funding is skewed toward genetic research and research into treatments and interventions.

In the time that autistic individuals have been submitting comments and testifying at IACC meetings, some positive change has been noted in the amount of funds earmarked for research into services and supports.

It is important that the IACC hear from everyone who is able to comment because part of the task of assessing importance is to determine the extent of the population that has an interest in the decisions that the IACC will make.

The IACC decides levels of funding for research into supports and services, but does not fund supports and services themselves.

TALKING POINTS
The Autistic Self Advocacy Network has developed these talking points to assist individuals in writing statements to IACC on the topic of supports and services.

The RFI lists a number of areas of concern that can be addressed. You do not have to address every topic. You can pick the ones that are the most important to you. Feel free to change the wording so that it reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up-to-date and have access to information, training, technological resources such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost-effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.

Transitions:

Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community-based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel. Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non-autistic-related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community-based participatory research can be invaluable in determining the best ways to access health and other care.

Finances:

Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one-size-fits-all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.

ASAN Urges Self-Advocates to Write Comments to the IACC

2008-09-04T09:18:00.004-04:00

The following announcement was released today by the Autistic Self Advocacy Network. We are strongly urging autistic self-advocates and our allies 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. It is not necessary to be a U.S. citizen to submit a comment.

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.

REQUEST FOR INFORMATION #1
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.

REQUEST FOR INFORMATION #2
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.

Upcoming SABE Conference in Indianapolis

2008-08-28T13:14:00.003-04:00

The annual National Self Advocacy Conference, presented by Self Advocates Becoming Empowered (SABE), will be held on September 4-7 in Indianapolis, within reasonable driving distance of the Southwest Ohio area. There is still time for those who are interested in the conference to sign up for it by visiting the SABE conference website.

SABE is a national self advocacy organization of people with disabilities. Its goals are to empower self advocates throughout the United States, to ensure that people with disabilities know their legal rights, and to replace institutions with meaningful community supports for Americans with developmental disabilities.

New Ohio Advocacy Blog

2008-08-15T14:46:00.003-04:00

The Ohio chapters of the Autistic Self Advocacy Network now have a joint blog that will focus on issues of statewide concern, as well as national and international ASAN announcements.

Our local chapters will continue to blog about local issues and to post general information of interest to our members and readers.

Click here to visit the new blog.

ASAN Public Service Announcement

2008-08-11T12:29:00.008-04:00

In response to the controversy regarding the use of offensive language in the upcoming movie Tropic Thunder, ASAN has produced a public service announcement that addresses the power of words:

For more discussion of the disability community's response to Tropic Thunder, visit Patricia E. Bauer's disability advocacy blog.

Many thanks to Christschool for creating the video.

Clearing up a few misconceptions

2008-08-03T11:09:00.002-04:00

Dayton Daily News staff writer D.L. Stewart wrote a column denouncing the offensive remarks recently directed at autistic children by a certain talk radio host who, according to Mr. Stewart, is so "cruel and tasteless" that he is not even worthy of having his name mentioned.

Mr. Stewart's willingness to speak out in defense of autistic children and to advocate the use of respectful language is most commendable. However, although the column was clearly well-intentioned, it contained a number of common misconceptions about autism, as discussed in the following letter:

Dear Mr. Stewart,

I am a member of the Southwest Ohio chapter of the Autistic Self Advocacy Network (ASAN). ASAN is an international organization that seeks to improve the representation of the autistic community in public policy discussions, to advance the autistic culture movement, and to raise awareness of civil rights issues that affect the autistic population.

I appreciate your taking the time to write a column condemning the recent hate speech against autistic children. However, I would like to clear up a few common misconceptions about autism that I noticed in the column. First of all, autism is not a disease or illness, and an autistic person should not be described as "sick." Autism is a developmental disability that is characterized by delays and/or differences in speech and communication.

While I recognize that the parent quote mentioned in your column does not necessarily reflect your personal views, please be aware that sensational phrases such as "...looked into the eyes of a child with autism and seen the heartbreaking emptiness" have the unfortunate effect of perpetuating disability prejudice. A child with a speech delay should not be presumed to lack intelligence or awareness of his surroundings; he simply hasn't learned how to talk yet.

Research has shown that about 90 percent of children on the autistic spectrum develop speech by age nine (C. Lord et al, "Trajectory of language development in autistic spectrum disorders," in Developmental Language Disorders: From Phenotypes to Etiologies, 2004). As for the small minority who do not develop speech, many learn to communicate with others through sign language and/or typing, in much the same way that a Deaf person who could not speak would communicate.

Please consider providing a correction to your article to clear up any potential misunderstandings among your readers.

Sincerely,

Meg Evans

Response to a Disappointing Series

2008-08-02T00:50:00.002-04:00

Redbook magazine recently printed a three-part series on autism describing the experiences of a mother, Nicole, who discovers that her young son is autistic. A member of ASAN Southwest Ohio wrote a letter to the editor expressing her concern about misleading statements and damaging assumptions in the articles:

Redbook Magazine
Editorial Offices
300 West 57th St.
22nd Fl.
New York, NY 10019

Dear Editor:

I am a 25-year-old autistic woman. I have closely followed your series on autism; and, to be honest, I was disappointed.

People are afraid of what they do not understand, and the way autism is portrayed worsens the panic. The isolation Nicole felt was a product of this fear, of the idea that autism is something foreign and mysterious and horrifying. Autistic people and their families are isolated much more by fear than we ever were by autism.

The article seems to say that autism has only two possible outcomes: A cure, or a tragedy. This is not true. I am autistic, and I am happy. I contribute to society. I have always loved my family, even when I wasn't good at saying it. Autism is a part of my personality; without it, I would not be myself.

We do not need to be "saved from autism"; we need what every other person needs--a chance to learn. Teach us to communicate; teach us to interact; but above all, accept us and our differences.

Yes, we think differently; we act differently; but they are differences that anyone can understand if they just take the time to listen to us. Fundamentally, we are simply human, like anyone else.

National Forum on Disability Issues

2008-07-27T18:41:00.007-04:00

The forum, organized by the American Association of People with Disabilities (AAPD) and sponsored in part by ASAN and The Autism Acceptance Project, was held at the First Church of God in Columbus, Ohio, on Saturday afternoon, July 26th. Ari Ne'eman, president of ASAN, arrived from Washington DC in the Road to Freedom disability rights bus. Bishop Timothy Clarke greeted the crowd, and Jeff Moyer provided original music. Welcoming speeches were given by Rep. Jon Husted, Ohio Speaker of the House; Tim Harrington of the Ability Center of Greater Toledo; and Andrew Imparato of AAPD.

Robert David Hall, who plays the part of Dr. Albert Robbins, the coroner on the popular television show CSI, spoke about his experiences as an actor with a disability and how hard it was for him to find roles that were not just stereotypes. He is the National Chairman of the Performers with Disabilities Caucus and seeks to bring about greater visibility of the disability community as a political constituency.

News director Mike Thompson of WOSU introduced the forum's moderator, broadcast journalist Judy Woodruff, who is currently working as a senior correspondent and political editor for the PBS program NewsHour with Jim Lehrer. A panel discussion then began, addressing the question of what is at stake for people with disabilities in this year's election.

John Hannah, Vice President of The Arc of Ohio, spoke about the need for better education and self-determination for people with developmental disabilities, calling for representation of self-advocates at the highest levels of policymaking groups and committees. Rebecca Hare, a project coordinator for the National Consortium on Leadership and Disability for Youth at the Institute for Educational Leadership, stated that "the American dream is not ADA-compliant yet" and spoke about the failure of many school districts to provide a meaningful education to students with disabilities; all too often, she said, these students receive "special diplomas" without having met state graduation requirements and are rejected by employers as a result. Cynthia Owens of the Oregon Council on Developmental Disabilities described her son's success in transitioning into the workforce, aided by SSI work incentives, and she advocated for a simpler benefit system that would be easier for recipients to navigate; with regard to the increased number of students with autism spectrum diagnoses, she stated that there should be more training for teachers and more funding for classroom aides. Paul J. Tobin, President and CEO of United Spinal Association, discussed medical care and benefits for injured veterans and the need to hire more adjudicators to clear up the claims backlog.

In response to a question from Judy Woodruff about funding constraints and disability services, the panelists agreed that these services should not be seen simply as a cost; rather, ensuring that all Americans are properly educated and productively integrated into the community would be a significant investment in the future. Mr. Tobin also pointed out that this question would not even be asked if the discussion had to do with services that were necessary for other groups of people.

Mike Strautmanis of the Democratic National Committee stated that exclusion makes everyone's lives poorer. He introduced Sen. Tom Harkin of Iowa, a long-term advocate of disability rights, who appeared as a surrogate for Sen. Barack Obama.

Sen. Harkin, who was the chief sponsor of the Americans with Disabilities Act, suggested that voters should consider not only the presidential candidates themselves but also their potential Supreme Court appointments. In the years since the passing of the ADA, Sen. Harkin explained, its original coverage was greatly constricted by Supreme Court decisions that redefined people as nondisabled—and therefore not protected from discrimination—if they could function effectively with medication or assistive technology. Although Sen. Harkin and others in the Senate are working on amendments to the ADA that will restore the original protections (the ADA Amendments Act already has passed in the House of Representatives), Sen. Harkin stated that an unfriendly Supreme Court made up of conservative activists could once again interpret the legislation to provide less coverage than Congress intended.

Sen. Harkin spoke about the importance of having a full-time advisor for disability issues, as Sen. Obama has pledged to do, in order to ensure that disability issues are not overlooked in making policy decisions.

The Community Choice Act, sponsored by Sen. Harkin and co-sponsored by Sen. Obama, was described as a means of correcting a structural bias in the Medicaid system that has the effect of forcing people into nursing homes and institutions. The CCA will provide funding for personal assistants and other supports and services necessary to allow Medicaid recipients with disabilities to live productively in the community. Sen. Harkin also noted that the CCA will help injured veterans.

Sen. Harkin stated that it is in America's economic interest to enable people with disabilities to live and work in the community and that it is also a moral imperative to do so. He also commented on the lack of accessible housing and proposed that federal housing and mortgage assistance programs should include accessibility requirements.

After a short break with more music, Sen. John McCain appeared by video from Arizona for a question-and-answer segment with Judy Woodruff. He spoke of his support for the Disability Vote Project and stated that he believes the exclusion of people with disabilities from community participation is a loss to America. After mentioning that he was a principal co-sponsor of the ADA, Sen. McCain pledged to support the ADA Amendments Act.

Sen. McCain proposed that the Veterans Administration should focus on providing specialized care for service-related conditions and that veterans should obtain their routine health care elsewhere, with a health insurance card. He suggested reducing excessive spending in other areas of government to make more funds available for veterans' health care.

Briefly discussing an Arizona program that funds home health care, Sen. McCain stated that he generally favors the idea of community choice. In response to a direct question from Judy Woodruff, however, Sen. McCain said that he does not support the Community Choice Act. He indicated that he believes it would be too expensive and the federal government has been spending too much.

Responding to Sen. Harkin's comment that the ADA Amendments Act might end up being eroded by decisions from conservative members of the Supreme Court, as the original ADA had been, Sen. McCain stated that he did not believe the Supreme Court was the problem. Rather, Sen. McCain attributed the judicial narrowing of protections under the ADA to a failure on the part of Congress to write the law in specific enough terms.

Sen. McCain also spoke about bipartisan Social Security reform.

After the question-and-answer session ended, a public service announcement "Get Out The Vote," produced by Self Advocates Becoming Empowered, was shown.

Darren Jernigan, who is a member of the Metro Nashville City Council and the Director of Government Affairs at Permobil, Inc., spoke about how much impact a small number of involved and committed citizens can have in an election. He urged those attending the forum to get out the vote, to volunteer to work on a campaign, and to contribute to a candidate.

Jim Dickson and Andrew Imparato of AAPD also spoke about the importance of the issues in this year's election to the disability community.

ASAN Southwest Ohio would like to thank AAPD, Sen. Obama's campaign, Sen. McCain's campaign, Judy Woodruff, Robert David Hall, and the other forum participants and sponsors for helping to clarify the issues facing the disability community in the upcoming election.

A video of the forum is available from AAPD.

Ad Boycott Against The Savage Nation and Talk Radio Networks‏

2008-07-24T11:58:00.004-04:00

In response to the grossly offensive statements made on the talk show The Savage Nation regarding autism, the Autistic Self Advocacy Network and other disability rights organizations are calling on the sponsors to withdraw their advertising, as announced today by ASAN President Ari Ne'eman:

Hello everyone,

As many of you have already heard, this past week talk radio personality Michael Weiner, better known on the air as Michael Savage, made several outrageous remarks in regards to autism, including, "Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket…I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot." A full transcript of his statements can be found here. Remarks like these spread ignorance about autism and threaten to return us to a previous era where parents were blamed and labeled as "refrigerator mothers" for having autistic children. Not only have Michael Weiner and Talk Radio Networks refused to retract these outrageous comments - they have added to them by claiming, unsupported by science of any kind, that the autism spectrum is an overdiagnosed medical condition. This is part of a broader pattern of statements attacking people with disabilities and our families. It requires a strong response.

As a result of this continued attack against autistic people and the broader disability community, the Autistic Self-Advocacy Network has joined with over a dozen national and regional disability rights organizations to call on the sponsors of Talk Radio Networks and the Savage Nation to pull their support. Together, we have issued a strong joint statement calling for an ad boycott. In addition, we've collected contact information for several of the major sponsors of Talk Radio Networks in order to empower our community to take further action. We urge you to use the information below to write, call and e-mail these sponsors and tell them why it is imperative they join companies like Aflac and Telesouth Communication that have already pulled their ads in response to these hateful remarks. There are over 50 million people with disabilities in the United States with approximately $200 billion in disposable income. It is time for us to make our voices heard.

Below you will find contact information for Talk Radio Networks' largest sponsors and a sample letter for you to use as a reference point in your e-mails and phone calls. We will be keeping an updated list on our website here and will post updates and changes to contact information as new information becomes available. In addition, if you would like to express your support for the disability community's joint statement on this issue, you can do so by signing our petition here. Organizations wishing to become signatories to our joint statement should contact us at info@autisticadvocacy.org. Please distribute this message to your networks and feel free to repost.

Sample Letter:

"To Whom It May Concern:

As a member of the disability community, I am outraged by the recent comments made by Talk Radio Networks' host Michael Alan Weiner, also known as Michael Savage, stating that autism is "a fraud...a racket...In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is." Not only have these comments not been retracted but Talk Radio Networks continues to stand by Michael Weiner as he continues spreading public misinformation about autism. Autism is a very real developmental disability affecting millions of Americans. Public ignorance and prejudice against people with disabilities represent one of the most significant obstacles to full access and inclusion of people with disabilities throughout society. I urge you to take immediate action and pull your financial support from Talk Radio Networks and The Savage Nation Radio Show in response to these hateful comments."

Contact Information:

ABC, Inc.:
VP Advertising/Sales Mike Shaw
Phone: 212 456-7272
mike.shaw@abc.com
VP Public Relations Kevin Brockman
Phone: 818 460-7756
Fax: 212-456-1424

Acura:
Acura Public Relations
Mike Spencer, 310-783-3165
info@acura.com

American Express:
Leslie Berland
212.640.5142
Leslie.A.Berland@aexp.com
American Express
P.O. Box 981540
El Paso, TX 79998-1540

Boca Java:
Stefanie Hochstadter
shochstadter@bocajava.com
1-888-262-2528
Boca Java
730 South Powerline Rd.
Suite D
Deerfield Beach, FL 33442

Campbell's:
Campbell Soup Company
Campbell Place
Camden, NJ 08103-1701
Phone: 800-257-8443
Phone: 800-871-0988

Citrix:
851 West Cypress Creek Road
Fort Lauderdale, FL 33309, United States
Americas PR
Jason Wyse
Americas Senior PR Manager
Phone: (786) 449-3740
Email: jason.wyse@citrix.com
Eric Armstrong
Director, Corporate Communications
Phone: (954) 267-2977
Email: eric.armstrong@citrix.com

Dish Network:
CEO Charlie Ergen: (303) 723-1010
CEO assistant: (303) 723-1005
EchoStar Satellite L.L.C.
Attn: Corporate Communications
9601 S. Meridian Blvd.
Englewood, CO 80112
press@echostar.com

Ebay:
Alan Marks
Senior Vice President Corporate Communications
Telephone: 1-408-376-7400
Fax: 1-408-369-4855
Email: info@ebay.com

General Motors:
Andrea Canabal
General Motors, Northeast Communications,
Work: +1-914-244-6059
Cellular: +1-914-391-6898
andrea.canabal@gm.com
Stockholder line: 313-667-1500

Gallo Winery:
John Segale
Gallo Winery Spokesperson
Work: 916-960-5341
Cell: 916-600-1081

Prudential:
Bob DeFillippo
Phone: 973-802-4149
bob.defillippo@prudential.com

Nestlé Purina PetCare:
Email: kschopp@purina.com
Phone: 314-982-2577
Fax: 314-982-2752

Simon & Schuster:
Michael Selleck
(800) 223-2336
info@simonsays.com

Staples, Inc:
Paul Capelli, 508-253-8530
paul.capelli@staples.com

Subway:
SUBWAY® Public Relations
(203) 877-4281
Les Winograd Ext. 1683
winograd_l@subway.com
Kevin Kane Ext. 1329
kane_k@subway.com

Volkswagen:
Keyes, Steve
Director, Press and Public Relations
Phone: 703 364 7650
Fax: 703 364 7071
Email: steve.keyes@vw.com

Thank you for your support and please distribute. Our combined activism has and will continue to help us create a world that respects, includes and supports people with disabilities throughout society. Remember, nothing about us, without us!

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

Meeting Minutes, July 2008

2008-07-20T08:43:00.003-04:00

At the meeting, we had both ASAN Southwest Ohio members and new visitors from the Columbus area who are interested in organizing an ASAN Central Ohio chapter. We talked about the lack of useful social groups for autistics in Columbus. Although there are a few groups led by professionals that focus on improving social skills, the Columbus area currently does not have social and community organizations where autistic people can just get together, chat, and network.

We discussed the efforts made by ASAN on both a national and international level to develop meaningful community organizations and to promote the involvement of autistic citizens in public policy discussions. Having an ASAN chapter in Columbus will be helpful from a political standpoint because it is the state capitol and the members of the Central Ohio chapter will be able to get involved in committees and other state government activities.

Community organizations for autistics also are important because the younger generation can benefit from the experience of older autistics, through both formal mentoring programs and informal discussions. Young people need to know that although our society often is overly rigid in expecting everyone to have certain kinds of skills, having a different set of skills does not mean that there is something wrong with a person; rather, that is diversity. Today's autistic youth need to be helped to overcome the discouragement that many of them have faced and, instead, to find encouragement.

We talked about the need for better and more inclusive programs in the schools. Sometimes autistic children are treated as if they are disruptive and a nuisance, when the real problems are lack of understanding, negative expectations, and failure to provide simple accommodations. The effect of the classroom on the child should be considered, not just the child on the class.

ASAN Southwest Ohio has offered to help with setting up a new blog for the ASAN Central Ohio chapter.

edit: The new blog is at http://asancentralohio.blogspot.com

Response to Cincinnati Radio Broadcast

2008-07-16T10:51:00.002-04:00

On July 14th, radio host Mike McConnell of the Cincinnati station WLW 700 discussed a recent incident in which a family in South Carolina was told to leave a restaurant because their four-year-old autistic child was crying loudly. Several people called in to comment on the program, including some who were obviously uninformed about autism and who suggested that autistic children did not belong in public places or in mainstream schools. Here is a link to the podcast.

ASAN Southwest Ohio sent the following letter to Mr. McConnell to express our concerns. For those who may also wish to contact Mr. McConnell about the program, midday@700wlw.com is the address where he can be reached.

Dear Mr. McConnell,

We are writing to you on behalf of the Southwest Ohio chapter of the Autistic Self Advocacy Network (ASAN). ASAN is an international organization that seeks to improve the representation of the autistic community in public policy discussions, to advance the autistic culture movement, and to raise awareness of civil rights issues that affect the autistic population.

Regarding your July 14th discussion of autistic children at restaurants, we are concerned that the tone of the comments suggested that some listeners might have thought you were advocating exclusion of autistic children from public establishments. Although we realize that this probably was not the intended message, we would appreciate it if you could issue a clarification to ensure that your listeners do not have the wrong impression.

Autism is not a static condition. Autism at age 5 does not look the same as autism at age 25 or age 50. Many autistic children outgrow their behavioral problems and become successful later in life. Autistic children, like any other young children, need opportunities for social interaction in public places so that they can learn proper behavior and become integrated into the community. Placing autistic children in restrictive and isolating environments only causes the child's social skills to deteriorate. This applies to restaurants, churches, and even mainstream education.

Also, forcibly removing someone else's autistic child from a public place is counterproductive on many levels. In addition to depriving the child of much-needed social interaction, it will increase the child's stress level and make the situation much worse. The child's feelings should be considered, in addition to the feelings of the other patrons. The child is indeed under stress, likely due to sensory overload, and a more gentle approach will help relieve some of this stress and make the situation better for everyone.

Perhaps the most dangerous thing an autistic child can learn when forcibly removed from a public place is that a stranger apparently has the right to discipline someone else's children.

Please help us to spread a message of inclusion and tolerance.

Joint Meeting of Southwest and Central Ohio Chapters

2008-07-13T09:43:00.002-04:00

The July meeting of ASAN Southwest Ohio will be a joint meeting with a Central Ohio (Columbus area) chapter that is in the process of forming. Accordingly, our meeting is being held in Springfield, which is midway between the two regions. The two groups will be getting acquainted, and we will discuss the ASAN-sponsored Presidential Forum in Columbus and other upcoming events.

The meeting will take place at 7 PM on Friday, July 18th, at the Panera Bread off of US-68 and OH-41. Its address is:

1950 N Bechtle Ave.
Springfield OH 45504

We anticipate that we will have at least three people attending from the Southwest Ohio area and at least three people from the Central Ohio area. If anyone reading this blog will be in or around Springfield on July 18th, please let us know (by sending an email to asansouthwestohio AT hotmail DOT com) if you would like to join us at the meeting.

Presidential Forum Update: Action Needed

2008-07-08T20:42:00.007-04:00

The presidential campaigns have not yet committed to their candidates' attendance at the National Forum on Disability Issues, scheduled to take place in Columbus, Ohio, on July 26, 2008. (Note that the location has been changed to the Conference & Technology Center at the First Church of God, 3480 Refugee Road, Columbus, Ohio 43232.)

Sending e-mails or otherwise contacting the campaigns will help to show that there is substantial community interest in this event. The following grassroots alert, distributed by the American Association of People with Disabilities, provides contact information. Please write to the campaigns and urge the candidates to participate in the forum in person.

ASAN and The Autism Acceptance Project are sponsors of this event.

~~~~~~~~~~GRASSROOTS ACTION ALERT~~~~~~~~~~

People with disabilities are 50 million + strong in America, 37 million of whom are voting age. Add to that figure our families, friends, caregivers, and advocates, and we're a force to be reckoned with.

On July 26, 2008, in Columbus, Ohio, the disability community wants to hear from the presidential candidates - Do they have specific policy objectives for Americans with disabilities? How will their existing policy platforms affect us? How will they include us in the new administration, if elected?

You can make sure that happens. Ask the candidates to participate in our forum. Let them feel the power of the disability vote!

WHEN: Start today! The forum isn't until July 26, and we need daily, every-day pressure on the campaigns all the way until the event.

WHAT TO DO:

1. Call, fax, email the campaigns.

Help us to create some friendly pressure on the McCain and Obama campaigns by calling, emailing, and faxing the campaign offices, urging the candidates to participate in person at The National Forum on Disability Issues on July 26, 2008 in Columbus, Ohio.

Sen. Barack Obama
Obama for America
P.O. Box 8102
Chicago, IL 60680
Call: (866) 675-2008
Fax: (312) 819-2089
Email: Alyssa Mastromonaco, amastro@barackobama.com (Chief Scheduler); Heather Higginbottom, hhigginbottom@barackobama.com (Policy Director); David Plouffe, dplouffe@barackobama.com (Campaign Manager)

Sen. John McCain
John McCain 2008
P.O. Box 16118
Arlington, VA 22215
Call: (703) 418-2008
Faxes: (703) 752-2515, (703) 413-0740
Email: Steve Schmidt, sschmidt@mccain08hq.com (day-to-day operations); Carla Eudy, ceudy@mccain08hq.com (National Scheduler); Doug Holtz-Eakin, dholtz-eakin@mccain08hq.com (Deputy Policy Director); Donna Jones, djones@mccain08hq.com (National Coordinator, Americans with Disabilities for McCain Coalition)

2. Show up with signs at their events.

We know the campaigns are likely to make stop-offs in or near where you live. If they do, go out to the rallies they hold and hold up a sign that says, "SEE YOU IN COLUMBUS, OHIO ON JULY 26!" Decorate the signs however you like, or print and paste a copy of the "Feel the Power of the Disability Vote" logo. We want the candidates and their staff to see these signs EVERYWHERE they go!

Ohio Developmental Disabilities Council Seeks Members

2008-07-02T14:53:00.006-04:00

There are two positions currently available for self-advocates on the Ohio Developmental Disabilities Council, which works with policymakers, providers, and individuals to improve services and supports for Ohio residents with developmental disabilities. Applicants should have experience serving on committees, boards, or organizations. The application deadline is August 1, 2008.

ASAN Southwest Ohio encourages qualified autistic self-advocates to apply.

The Ohio Developmental Disabilities Council (ODDC) is currently seeking applicants for membership terms beginning in October, 2008. Council membership must comply with categories listed in the federal DD Act. Openings this year will be for the following categories: a) two (2) individuals with a developmental disability, and/or b) two (2) parents or guardians of children with a developmental disability. It is possible that one (1) representative will also be selected from a non-governmental agency or private nonprofit group concerned with services for individuals with developmental disabilities.

All candidates for DD Council membership should have experience serving on committees, boards, or organizations. Such experience concerned with persons with developmental disabilities would be especially relevant. Applicants should have first-hand knowledge about developmental disabilities in Ohio.

It is very important that applicants have time to attend six meetings per year and serve on at least two committees. Each meeting of Council occurs over a two-day period.

Serving as a member of Council provides the opportunity to get involved and work in a collaborative manner with state and federal policymakers, state and local providers, and individuals with developmental disabilities and their family members. Council advocates to improve the system of supports and services for individuals with developmental disabilities and their families, and it conducts grant activities for the same purpose.

Governor Ted Strickland will appoint members for three-year terms beginning October 1, 2008 and ending September 30, 2011. Application packets are available from the ODDC office and must be completed and returned to the office by August 1, 2008. Applications may be requested:

By mail: ODDC, 8 East Long Street, Suite 1200, Columbus, Ohio 43215
By phone: (614) 466-5205 or toll-free (800) 766-7426. If you are leaving a message, please spell out your name, and give your address including zip code, and phone number.
By email by contacting Tammy.Waller@dmr.state.oh.us

Inclusive Soccer in Cincinnati

2008-06-28T10:53:00.007-04:00

ASAN Southwest Ohio recently received an e-mail from Jim Myres with information about Cincinnati TOP Soccer, an athletic program for children and young adults with special needs in Southwest Ohio. The program serves young people ages 5 through 20, and autistic youths are welcome to play on Cincinnati TOP Soccer teams.

According to the program's website, Cincinnati TOP Soccer is "part of a national soccer program created to train young people with disabilities in a caring coaching environment. The Greater Cincinnati chapter allows a child to participate in the same community sports program as their non-disabled brothers and sisters - to wear the same club uniform, play at the same fields, go to the same awards banquets, and if appropriate, play on a non-disabled team."

ASAN Southwest Ohio supports inclusion of autistic individuals and others with disabilities as fully participating members of community programs. We appreciate Mr. Myres' taking the time to let us know about Cincinnati TOP Soccer, and we hope that its teams will have an enjoyable fall season.

Autistic Adults Planning Committee Seeks Comments

2008-06-20T09:15:00.003-04:00

In response to lobbying efforts by ASAN's New Jersey chapter to create a state planning committee focused on the needs of autistic adults, the New Jersey Adults with Autism Task Force was created. ASAN is seeking comments from autistic adults, family members, professionals, and other interested parties regarding public policy on the needs of autistic adults. Comments should be sent to ASAN's national organization, as requested by Ari Ne'eman, and will be shared with the Task Force.

Hello all,

Today, I will attend the first meeting of New Jersey Adults with Autism Task Force, the nation's first state-level planning committee specifically on the needs of Autistic adults. As some of you may recall, the Autistic Self-Advocacy Network lobbied for the creation of this task force with an autistic representative. On April 2nd, I was named by Governor Jon Corzine of New Jersey to serve as one of the body's public members. We are pleased that our community's voice was heard on this issue and I look forward to serving on the Task Force in future months. Although it will only make policy recommendations for one state, this body will develop ideas that, if effective, may provide guidance for public policy on the needs of autistic adults across the globe.

As such, I am personally inviting autistic adults, family members, professionals and others who are interested in sharing their thoughts about the Task Force's mission to e-mail ASAN at info@autisticadvocacy.org with stories, recommendations and other comments that you feel will help broaden the perspectives of the Task Force's members, including myself. Please put the keyword, "AUTISTIC ADULTS" in your subject line and feel free to send your stories and/or thoughts at any point over the coming months. In your e-mail, please indicate where you are writing from, some background details about you to the extent you feel comfortable sharing them and whether or not you would be okay with your story being shared publicly. No e-mails will be posted anywhere without the prior written permission of the author. Over the next year, the Task Force will draft policy that I hope will serve as a model for meeting the needs of autistic adults now and into the future. Thank you and please feel free to distribute this message to your networks.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org/
732.763.5530

ASAN Seeks to Strengthen the Americans with Disabilities Act

2008-06-19T00:16:00.008-04:00

Several disability and civil rights organizations, including the Autistic Self Advocacy Network, currently are working with American business associations to provide greater protection against employment discrimination by amending the Americans with Disabilities Act. Details below:

Employers and Disability Advocates Push for Amendments to Landmark Americans with Disabilities Act

Employer & Disability Alliance Forms to Clarify & Secure Promise of the ADA

Washington, DC, June 18, 2008 – This afternoon, former Congressman Tony Coelho, U.S. Chamber of Commerce President Tom Donohue, LCCR Executive Vice President Nancy Zirkin and autism advocate Ari Ne'eman announced the formation of the Employer & Disability Alliance – a new collaborative effort among some of America's largest business associations and leading disability and civil rights advocates to promote the ADA Amendments Act.

"Narrow court interpretations have removed ADA protections for people Congress intended to cover – those with serious heart conditions, epilepsy, diabetes, and even cancer," said Zirkin. "Organizations in the Employer & Disability Alliance have been working around the clock with leaders in Congress to return ADA coverage – through the ADA Amendments Act – to these people and to craft an agreement that is fair to both employers and those with disabilities," said Zirkin.

"I always say that I don't know of any other group in America who wants to pay taxes – it's those of us with disabilities, because a job is our dignity and an opportunity to participate in this great American dream," said Coelho, the primary author of the original ADA. "What the ADA Amendments Act does is provide us the opportunity to work with the business community to get those jobs we want."

"I'm thrilled to be able to speak up in support of this essential restoration of civil rights law that will ensure that Americans with disabilities, like myself, will continue to enjoy protections and are included throughout society," said Ne'eman who is the founding president of the Autistic Self Advocacy Network.

The ADA Amendments Act clarifies the current requirement that impairment substantially limit a major life activity in order to be considered a disability. It also confirms for the courts that people with disabilities should not lose their civil rights protections because their condition is treatable with medication or can be addressed with the help of assistive technology. The Employer & Disability Alliance sent a letter to the Hill explaining these and other elements in more detail this morning. The full text of the letter is below.

"Some will criticize the details of the compromise, and this criticism will come from some in the employer community and some in the disability community," said Donohue. "But, in making decisions comes some heat and we are willing to take that heat to do what is necessary. Fortunately, the new proposal has been widely vetted in the business community and we look forward to working with the policymakers on Capitol Hill to move the ball forward, with the hope that this agreement can be kept largely intact."

Good Morning America neurodiversity links

2008-06-10T17:24:00.008-04:00

For those who didn't have a chance to watch the appearance of ASAN President Ari Ne'eman on today's Good Morning America segment about neurodiversity, here is a link to the video:

http://abcnews.go.com/Video/playerIndex?id=5036816

An article discussing the show, with many comments from viewers, can be found here:

http://abcnews.go.com/GMA/OnCall/story?id=5033594

In response to the show, Estée Klar-Wolfond wrote an insightful article on her blog addressing the misconceptions and outdated views of disability that often are expressed in the media:

http://joyofautism.blogspot.com/2008/06/to-diane-sawyer-equality-paradox.html

Autreat 2008

2008-06-01T17:05:00.002-04:00

The 2008 Autreat conference, to be held June 23-27 in Bradford, Pennsylvania, will feature presentations by several well-known autistic self-advocates, including Ari Ne'eman and Scott Robertson of ASAN, Alex Plank of Wrong Planet, Sola Shelly and Ronen Gil of the Autistic Community of Israel, Autreat organizer Jim Sinclair, and Autism Hub blogger Joel Smith. In addition, assistive technology specialist Barbara Stern Delsack and occupational therapist Susan J. Golubock will be discussing therapy and adult services, and Janis Oberman will address the problem of discriminatory practices in the social service system in California and elsewhere.

As described on the conference's website, Autreat is an opportunity for autistic people and those with related developmental differences, our friends, and supporters to come together, discover and explore autistic connections, and develop advocacy skills, all in an autistic-friendly environment. Family members and professionals are welcome to attend, but the structure and content of this event will be determined by the interests and sensibilities of autistic people.

Those who plan to donate to the Autreat scholarship fund or to apply for an Autreat scholarship are requested to do so as soon as possible.

ASAN Amicus Statement Helps Free Nate Tseglin

2008-05-28T00:48:00.012-04:00

Nate Tseglin, an autistic teenager in California who was taken from his family over a year ago by local authorities and put into an institution, was freed Tuesday after a court hearing at which the Autistic Self Advocacy Network submitted an amicus (friend of the court) statement. To learn more about Nate's case, visit http://www.getnatehome.com/faq.html for the details.

Here is the statement provided to the court by ASAN regarding Nate Tseglin:

The Autistic Self Advocacy Network (ASAN) is an international organization of adults and youth on the autism spectrum, including Asperger's Syndrome, working to promote the interests of the autistic self-advocate community through public policy and social change advocacy. We are writing as friends of the court to express our concern about the treatment of Nate Tseglin, a young adult with a diagnosis of Asperger's Syndrome who has been taken away from his family and placed in an institution under heavy psychotropic medication.

The right of individuals with disabilities to live in the community has been well established by the United States Supreme Court under the landmark Olmstead v. L.C. decision. The ruling requires states to shift funding from institutional placements to community living supports. Given the clear evidence that institutional settings and the indiscriminate use of psychotropic medication negatively impact the quality of life of autistic adults and youth, we are concerned by Nate's continued placement under restraint in a residential facility where he is isolated from his family, his community, and any meaningful educational or social opportunities. The overwhelming consensus of the scientific community indicates that such a placement is inappropriate, unnecessary, and counterproductive.

Scientific studies have not found that autistic persons are more likely to commit violent acts or violent crimes than non-autistic persons despite some media sensationalism of isolated cases of violence (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Autistic persons are, however, more likely to experience depression, anxiety, and low self-esteem, for which cognitive-behavior therapy (CBT) and one-on-one talk counseling are the recommended interventions (Stewart, Barnard, Pearson, Hasan, & O'Brien, 2006; Sofronoff, Attwood, & Hinton, 2005). Autistic persons also require positive support systems, frequent encouragement and praise, and living and learning environments that are compatible with their cognitive strengths, challenges, and preferences in order to achieve success in their life pursuits and gain a high quality of life (Renty & Roeyers, 2006; Plimley, 2007). Psychotropic medications should always be used with extreme caution with autistic persons as typically these medications are not specifically tested on this population in clinical studies, and psychotropic medications may cause substantial harm if used in an indiscriminate fashion.

Nate's current placement does not meet his needs and is likely to result in long-term physical and emotional damage. We urge the Court to recommend that Nate be removed from the Fairview Developmental Center and returned to the community.

Regards,

Ari Ne'eman
The Autistic Self Advocacy Network,President
1101 15th Street, NW Suite 1212
Washington, DC 20005
aneeman@autisticadvocacy.org
(732) 763-5530

Scott Michael Robertson
The Autistic Self Advocacy Network,Vice President
srobertson@autisticadvocacy.org
(973) 464-6315

References:

Barry-Walsh, J. B., & Mullen, P. E. (2004). Forensic Aspects of Asperger's Syndrome. The Journal of Forensic Psychiatry & Psychology, 15(1), 96-107.

Murrie, D. C., Warren, J. I., Kristiansson, M., & Dietz, P. E. (2002). Asperger's Syndrome in Forensic Settings. International Journal of Forensic Mental Health, 1(1), 59-70.

Plimley, L. A. (2007). A Review of Quality of Life Issues and People with Autism Spectrum Disorders. British Journal of Learning Disabilities, 35(4), 205-213.

Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10(5), 511-524.

Sofronoff, K., Attwood, T., & Hinton, S. (2005) A randomised controlled trial of a CBT intervention for anxiety in children with Asperger syndrome, Journal of Child Psychology and Psychiatry 46 (11) , 1152–1160

Stewart, M. E., Barnard, L., Pearson, J., Hasan R., & O'Brien, G. (2006) Presentation of depression in autism and Asperger syndrome: A review, Autism, 10 (1), 103-116

Schools and Behavior

2008-05-27T11:44:00.008-04:00

ASAN Southwest Ohio recently received an inquiry from a Cincinnati educator who wanted to discuss school policies regarding special needs children and behavioral issues. She wrote that she was recently assigned to work with two autistic children and that she has been doing her own research to gain a better understanding of their needs. Although she loves her job, she says, it frustrates her that the school does not seem to have an effective policy for dealing with behavioral incidents. The children she teaches have been placed in a room with five non-autistic children identified as having severe behavioral handicaps, and she feels that this placement is not helping her students. When she reports behavioral incidents, nothing is done to address the problems.

We responded by discussing the federal requirement that as to special needs children, responses to behavioral issues must be determined on an individual basis, according to each student's needs as identified in the IEP. Of course, this does not mean that teachers should deal with behavioral problems on an ad hoc basis, just making things up as they go along. Children need consistency from their teachers in addressing behavioral issues, and such consistency can be especially important for autistic children. It is therefore advisable for each special needs student to have an individual plan that identifies problematic behaviors (if any) and the appropriate responses by teachers and staff to those behaviors. When a behavioral incident is reported, the plan should be reviewed, in consultation with the parents, to determine what classroom changes and accommodations could be helpful to the child's development. Teachers who work with special needs children should receive regular continuing education to improve their understanding of behavioral differences.

We also agreed that the placement she described was not helpful for her autistic students. ASAN advocates for inclusive settings for children with developmental differences, rather than segregated placements. Inclusive education recognizes that all children have the potential to contribute to society, that their differences should be respected, and that they should receive reasonable accommodations when necessary. All children benefit from a greater understanding of the diverse ways in which humans learn and adapt to our surroundings.

ASAN Southwest Ohio welcomes inquiries from educators and others who seek to learn more about the characteristics and needs of the autistic population.

Autistic Student Abused in St. Lucie County Schools

2008-05-24T17:56:00.003-04:00

ASAN has issued the following call to action for the autistic community regarding the abuse of an autistic kindergarten student, Alex Barton, by his teacher, Wendy Portillo.

Hello,

As some of you may already be aware from news articles and blog posts on the topic, last week a Morningside Elementary Kindergarten teacher had students "vote out" of the class a 5-year old autistic student named Alex Barton. According to the news article, the teacher had each of Alex's classmates, including his sole friend in the class, state publicly what they disliked about him and then announced that they would take a vote to remove him from the class. Alex has not been back to school since and has suffered significant emotional trauma as a result of this incident. Regardless of who you are or what your connection to the autistic and autism communities might be, I think we can all agree that this is unacceptable.

We need to band together to prevent future such abuses from occurring, to ensure that this teacher is properly disciplined and to encourage this school to adopt both a strong bullying prevention policy and training on respect for all forms of diversity aimed at both teachers and students. As such, we've provided contact information below for you to write to communicate your outrage. Please be polite yet firm in your comments, pointing out the unacceptability of such actions when aimed at any student, as well as the need for this school to adopt policies to prevent this from happening in the future. This is an opportunity to drive home the message that we will not stand by while one of our own is abused. We ask that you please cc: info@autisticadvocacy.org in your e-mails to the school district so we can keep track of the strength and sources of this response. Remember: abusive messages hurt our cause - please be respectful in your comments.

Contact info:

Morningside Elementary School Principal:
Mrs. Marcia Cully
cullym@stlucie.k12.fl.us
(772) 337-6730

St. Lucie County Schools Superintendent:
Michael J. Lannon
4204 Okeechobee Road
Ft. Pierce FL 34947-5414
Phone: 772/429-3925
FAX: 772/429-3916
lannonm@stlucie.k12.fl.us

St. Lucie County School Board Chair:
Carol Hilson
772-519-0397
hilsonc@stlucie.k12.fl.us

Vice Chair:Judith Miller
772-528-4545
millerj@stlucie.k12.fl.us

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

ASAN Sponsors Presidential Forum on Disability Issues

2008-05-13T22:14:00.002-04:00

The Autistic Self Advocacy Network is a supporting co-sponsor of the National Forum on Disability Issues, to be held at Veterans Memorial in Columbus, Ohio, on July 26, 2008. This event is a nonpartisan forum on national disability policy. The presidential candidates have been invited to discuss their views on the future of disability policy in America. Members of the audience will be allowed to ask questions through a moderator.

A similar forum that was held in New Hampshire in November made history as the first presidential candidates' forum on disability issues. Seven candidates participated in that forum, five of them in person.

ASAN expresses its gratitude to Estée Klar-Wolfond of The Autism Acceptance Project for her generous assistance.

Potential Alliance

2008-05-03T10:28:00.004-04:00

We are exploring the possibility of working with the Ohio chapter of TASH to advance policy initiatives of interest to the autistic community in Ohio. This is still in the preliminary discussion stage, but seems promising so far.

TASH seeks to develop inclusive communities that allow for full participation of persons with disabilities. Its mission is to eliminate physical and social obstacles to equity, diversity, and quality of life. On many occasions, TASH has provided testimony and legislative advocacy regarding disability rights issues. It strongly advocates banning the use of aversive behavior control methods that inflict pain on children and adults with disabilities.

The Ohio chapter of TASH has indicated a particular interest in working with ASAN Southwest Ohio on matters of legislative advocacy.

Meeting Minutes, April 2008

2008-04-22T09:54:00.004-04:00

During the meeting, we identified several ways in which we could improve our connections and visibility in the community. We decided that it would be desirable to contact various people at Wright State University and in the Ohio legislature and Washington DC regarding our group. Current legislative proposals addressing autism, which we may wish to discuss with legislators and others, include Rehabilitation Services Commission funding and expanding insurance coverage for autism-related therapies. We want to stress the point that funds for therapies should be directed to known beneficial uses, such as speech therapy, and not wasted on unproven and possibly harmful alternative fad treatments.

We agreed that letter-writing campaigns would be helpful to raise the visibility of the autistic community's concerns among legislators, magazine publishers, and others who may not be aware of the civil rights issues. Redbook magazine was mentioned as an example of a publication that has printed damaging stereotyped articles. Issues to be raised in letters to Ohio legislators include providing appropriate educational services to help children learn and communicate in the ways that they are best able, improving the enforcement of laws against disability discrimination, determining the actual needs of those who receive adult services based on input from the self-advocate community, and ensuring that autism awareness efforts are realistic and not stigmatizing.

We also discussed making contact with local autism societies and support groups, which could be useful to help us become more well known in the community.