tag:blogger.com,1999:blog-77601640687482307862024-03-14T05:08:29.060-04:00Autistic Self Advocacy Network, SW Ohioasansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.comBlogger115125tag:blogger.com,1999:blog-7760164068748230786.post-84788931321208706062011-04-26T19:59:00.000-04:002012-06-14T21:37:20.534-04:00Blog ClosedThe 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.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-40251118469038883432010-11-20T20:06:00.003-05:002010-11-20T20:16:55.315-05:00True Confessions<em>By Meg Evans.</em><br /><br />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:<br /><br /><a href="http://lizditz.typepad.com/i_speak_of_dreams/2010/11/so-wrong-it-is-funny-jb-handley-claims-sullivan-is-bonnie-offit.html">I am Bonnie Offit.</a><br /><br />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.<br /><br />Happy holidays to all!asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com1tag:blogger.com,1999:blog-7760164068748230786.post-38407034519422654512010-07-27T16:24:00.002-04:002010-07-27T16:27:38.140-04:00IACC Public Comment Reminder<em>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.<br /></em><br /><br /><br />From: NIMH IACCPublicInquiries (NIH/NIMH) <iaccpublicinquiries@mail.nih.gov><br />Date: Mon, Jul 26, 2010 at 3:20 PM<br />Subject: The IACC RFI Closes This Week!<br /><br /><br /><br />Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan Closes This Friday, July 30, 2010<br /><br />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.<br /><br />If you would like to respond to the RFI, please go to: <a href="http://www.acclaroresearch.com/oarc/2010rfi/">http://www.acclaroresearch.com/oarc/2010rfi/</a>. Responses will be accepted until this Friday, July 30, 2010.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-655880410166972632010-06-23T02:06:00.002-04:002010-06-23T02:09:32.808-04:00NCD Appointment of Ari Ne'eman ConfirmedThe 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 <a href="http://www.ncd.gov">http://www.ncd.gov</a><br /><br />An article about the confirmation can be found on Disability Scoop:<br /><br /><a href="http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/">http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/</a>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-42291507641460318682010-06-10T12:14:00.002-04:002010-06-10T12:19:20.628-04:00Disability Representation in Health Care Reform<em>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 </em><a href="http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=116"><em>on the main ASAN website</em></a><em> and is reposted below.</em><br /><br /><br /><br />June 9, 2010<br /><br /><br />To:<br /><br />Kathleen Sebelius<br />Secretary<br />Health and Human Services<br /><br />Mary Wakefield<br />Administrator<br />Health Resources and Services Administration<br /><br />Pam Hyde, JD<br />Administrator<br />Substance Abuse and Mental Health Administration<br /><br /><br />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.<br /><br />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).<br /><br />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)<br /><br />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)<br /><br />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.”<br /><br />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.<br /><br />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.<br /><br />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.)<br /><br /><br />Sincerely<br /><br />Access Living<br />ADAPT<br />ADAPT Montana<br />Alpha-1 Association<br />Alpha-1 Foundation<br />American Association of People With Disabilities<br />American Association on Health and Disability<br />Amputee Coalition of America<br />American Medical Rehabilitation Providers Association<br />American Network of Community Options and Resources<br />American Speech-Language-Hearing Association<br />The Arc of the United States<br />Association of Maternal & Child Health Programs<br />Autistic Self-Advocacy Network<br />Bazelon Center for Mental Health Law<br />Brain Injury Association of America<br />Bronx Independent Living Services<br />California Foundation Independent Living Centers<br />Center for Disability Rights (Rochester)<br />Center for Independence of the Disabled, NY.<br />Center for Self-Determination<br />Center for Women's Health Research at UNC<br />CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder<br />COPD Foundation<br />Council for Exceptional Children<br />Disability Health Coalition<br />The Disability Network<br />Easter Seals<br />The Epilepsy Foundation<br />First Signs<br />Hearing Loss Association of America<br />Life Skills Institute and Life Skills, Inc<br />Little People of America<br />Mental Health America<br />National Association of County Behavioral Health and Developmental Disability Directors<br />National Association of Head Injury Administrators<br />National Association of Councils on Developmental Disabilities<br />Khmer Health Advocates, Inc.<br />National Coalition for Mental Health Recovery<br />National Council on Independent Living (NCIL)<br />National Down Syndrome Society<br />National Organization of Nurses with Disabilities<br />National Association of Private Special Education Centers<br />National Association of the Deaf<br />National Center for Environmental Health Strategies, Inc.<br />National Multiple Sclerosis Society<br />National Spinal Cord Injury Association<br />New York Association of Psychiatric Rehabilitation Services<br />Not Dead Yet<br />Physician-Parent Caregivers<br />Regional Center for Independent Living (Rochester, NY)<br />Rochester ADAPT<br />Spina Bifida Association<br />Statewide Independent Living Council of GA, Inc.<br />Stop CMV - The CMV Action Network<br />Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine<br />TASH<br />Tourette Syndrome Association<br />Tuberous Sclerosis Alliance<br />Master of Public Health Program, Tufts University School of Medicine<br />United Cerebral Palsy<br />United Spinal Association<br />Center on Independent Living, University of Kansas<br /><br /><br />References:<br />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<br />Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646<br />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.<br />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.<br />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.<br />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:<br />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.<br />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.<br />Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC<br />Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.<br />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<br />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.<br />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<br />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 2000asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-62172566920799626482010-06-02T14:22:00.004-04:002010-06-03T08:37:05.953-04:00Book Review: Aspergirls by Rudy SimoneThe 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com2tag:blogger.com,1999:blog-7760164068748230786.post-41596900852627766812010-05-03T09:29:00.003-04:002010-05-04T16:57:02.056-04:00Research Study on Healthcare Inequities<div align="left"><em>Guest post by Elesia Ashkenazy, ASAN Board Member and Portland, Oregon Chapter Coordinator.</em><br /><br /><br />Finally, something about Autistics done with Autistics that might actually help us out!<br /><br />• Participate in research, not just about Autistics, but with Autistics!<br />• Have your voice included in research!<br />• The Gateway Project is recruiting adults over the age of 18 to participate in online studies.<br />• AASPIRE is conducting a new Gateway study about healthcare inequities.<br />• Participants may win a $25 Amazon.com gift certificate<br />• To learn more, visit http://www.aaspire.org/projects/healthcare1.html<br />• Please share this invitation to participate in research widely!<br /><br /><br />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.<br /><br />I have appended our flier for your convenience.<br /><br />Regards,<br /><br />Elesia Ashkenazy<br /><br />ASAN, Board member & Chapter Coordinator<br /><br />AASPIRE, Community Partner & Community Council Chair<br /><br /><br /><br /><strong>Be Included in Autism Research</strong><br /></div><div align="left">The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in<br />research WITH autistic adults, not just ABOUT autistic adults.<br />The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to<br /><br />*encourage the inclusion of autistic adults in matters which directly affect them;<br /><br />*include autistic adults as equal partners in research about autism;<br /><br />*answer research questions that are considered relevant by the autistic community;<br /><br />*use research findings to effect positive change for people on the autistic spectrum.<br /><br />The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.<br /><br />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.<br /><br />To participate in the AASPIRE Gateway Project:<br /><br />1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.<br /><br />2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.<br /><br />3. You will be notified by email when new studies for which you are eligible become available.<br /><br />Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.<br /><br />If you would like to learn more about AASPIRE or the AASPIRE the Gateway Project, you can<br /><br />Go to the Gateway home page at <a href="http://www.aaspire.org/gateway">www.aaspire.org/gateway</a>.<br /><br />Send an email to Dora Raymaker at <a href="mailto:dora@aaspireproject.org">dora@aaspireproject.org</a>.<br /><br />Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.<br /><br /><br />OHSU IRB # 3762; UW IRB# SE-2008-0749<br />Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University<br />Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison<br />Katherine McDonald, PhD, Portland State University<br />Dora Raymaker, Autistic Self-Advocacy Network </div>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-73938965336333472232010-04-30T11:19:00.003-04:002010-04-30T11:26:41.191-04:00Secretary Sebelius Appoints Ari Ne'eman to IACCThe 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 <a href="http://iacc.hhs.gov/">http://iacc.hhs.gov/</a>.<br /><br />A news release has been posted on the Health & Human Services website:<br /><br /><a href="http://www.hhs.gov/news/press/2010pres/04/20100430a.html">http://www.hhs.gov/news/press/2010pres/04/20100430a.html</a>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-76452326312454642452010-04-19T08:43:00.002-04:002010-04-19T08:47:19.354-04:00Book Review: Get Out, Explore, and Have Fun!Lisa Jo Rudy, who blogs at <a href="http://www.autism.about.com/">autism.about.com</a>, 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 <em>Get Out, Explore, and Have Fun! How Families of Children with Autism or Asperger Syndrome Can Get the Most out of Community Activities</em>, begins with a thoughtful discussion of why it is so important for autistic children to be involved in their communities.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com3tag:blogger.com,1999:blog-7760164068748230786.post-82989531216531524582010-03-04T11:32:00.004-05:002010-03-04T11:42:35.743-05:00House Passes Restraint and Seclusion Bill<em>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.</em><br /><br /><br /><br /><strong>For Immediate Release:<br /><br />March 4, 2010</strong><br /><br /><br />Contact: Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145<br /><br />Andrew Imparato, American Association of People with Disabilities, (202) 521-4301<br /><br /><br /><u>Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation</u><br /><br /><em>Legislation that protects students with disabilities a key item on Coalition Agenda</em><br /><br /><br />(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.<br /><br />“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.<br /><br />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.<br /><br />“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."<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /><br /><strong>About the Justice for All Action Network</strong><br /><br /><strong>Mission:</strong> 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.<br /><br />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.<br /><br /><strong>Steering Committee Members:</strong> 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.<br /><br /><strong>For more information</strong>, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, <a href="mailto:pdurbinwestby@autisticadvocacy.org">pdurbinwestby@autisticadvocacy.org</a>; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, <a href="mailto:aimparato@aapd.com">aimparato@aapd.com</a>.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-90612528683099276702010-03-02T13:47:00.004-05:002010-03-02T14:05:55.253-05:00Ohio Parent Survey on Autism and IEP Collaboration<em>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.</em><br /><br /><br />Autism and IEP Collaboration Survey<br /><br />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.<br /><br />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.<br /><br />Please complete the survey by <a href="http://spreadsheets.google.com/viewform?hl=en&formkey=dHUzWXZQYXZQV3FnQ1BXQzdET1liWHc6MA">following this link</a> to the Google Docs location.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-68774995754325269542010-02-23T10:19:00.002-05:002010-02-23T10:22:16.158-05:00More Calls Needed on Restraint and Seclusion<em>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!</em><br /><br /><br />Hello,<br /><br />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).<br /><br />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.<br /><br />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.<br /><br />WHAT YOU CAN DO:<br /><br />Ask your Congressional Representative to Co-sponsor H.R. 4247 and your Senators to Co-Sponsor S. 2860 on Friday, February 26th!!<br /><br /><br />To find out the names of your US Senators and Representative, go to <a href="http://www.congress.org/">http://www.congress.org/</a><br />Dial the Capitol Switchboard at 202-224-3121 and ask for the offices of your US Senators and Representative<br />Ask to speak to the person working on education issues<br />Identify yourself as a constituent and the organization that you represent (if any)asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com1tag:blogger.com,1999:blog-7760164068748230786.post-23857465340722417932010-02-03T09:17:00.006-05:002010-02-23T10:22:45.157-05:00More Action Needed on Restraint & Seclusion Bill<em>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 <a href="http://edlabor.house.gov/markups/2010/02/preventing-harmful-restraint-a.shtml">Education and Labor Committee website</a> at 11:00 am Eastern time.</em><br /><br /><br />Hello,<br /><br />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.<br /><br /><br />WHAT YOU CAN DO:<br /><br /><br />Call your Congressional representative to co-sponsor H.R. 4247. Encourage your friends, family, and coworkers to participate too!<br /><br />To find out the names of your Representative, visit http://www.congress.org/ and type in your zip code.<br />The names of your Representatives will be located on the left side of the page under President & Congress.<br />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.<br /><br />Identify yourself as a constituent and the organization that you represent (if any).<br />If you have a restraint and seclusion story, please give them some of the details so they understand why these bills are so important.<br /><br />Message:<br /><br />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.”<br /><br />Thank you for your efforts and please keep up the good work! Nothing About Us, Without Us!<br /><br /><br /><strong>Edit:</strong> 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!asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com1tag:blogger.com,1999:blog-7760164068748230786.post-33323811230829290652010-01-15T16:09:00.004-05:002010-01-15T16:18:09.689-05:00Restraint & Seclusion National Call-In Day - Contact Your Members of Congress<em>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.<br /></em><br /><br />Dear Friends, Advocates and Community Members,<br /><br />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.<br /><br />WHAT YOU CAN DO:<br /><br />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.<br /><br />• To find out the names of your US Senators and Representative, click here (link to <a href="http://www.congress.org/">www.congress.org</a>)<br />• Ask for the offices of your US Senators and Representative<br />• Ask to speak to the person working on education issues<br />• Identify yourself as a constituent and the organization that you represent (if any)<br /><br />Message: “ I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”<br /><br />Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”<br /><br />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 <a href="mailto:info@autisticadvocacy.org">info@autisticadvocacy.org</a> for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit <a href="http://www.tash.org/aprais">www.tash.org/aprais</a> to learn more.<br /><br />Regards,<br />The Autistic Self Advocacy Network and the APRAIS Coalitionasansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-15388042479312419642010-01-06T13:16:00.005-05:002010-01-15T16:20:39.945-05:00Action Alert on Autistic Child Charged with Felony<em>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.</em><br /><br /><br />Hello,<br /><br />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.<br /><br />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:<br /><br /><br />School Principal:<br />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)<br />Phone: 479-646-0834<br />E-mail: psiebenm@fortsmithschools.org<br /><br /><br />School Superintendent:<br />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)<br />E-mail: bgooden@fortsmithschools.org<br />School Board Office: 1-479-785-2501 Ext. 1201<br /><br /><br />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:<br /><br />-Drop the charges against Zakhqurey Price<br /><br />-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<br /><br />-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.<br /><br /><br />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!<br /><br /><br /><strong>Update:</strong> The hearing has been rescheduled for April 13th. Click <a href="http://thezakhappeal.com/">here</a> for more on how you can support Zakh and his family.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-2786628999071836422009-12-17T12:08:00.005-05:002009-12-17T12:17:13.057-05:00Ari Ne'eman Chosen by President Obama for National Council on Disability<em>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. </em><br /><br /><br /><div align="center">The White House<br />Office of the Press Secretary<br /><br />For Immediate Release<br />December 16, 2009</div><br /><br /><strong>President Obama Announces More Key Administration Posts, 12/16/09</strong><br /><br />WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:<br /><br />•Marie Collins Johns, Deputy Administrator, Small Business Administration<br />•Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation<br />•Jonathan M. Young, Chair, National Council on Disability<br />•Carol Jean Reynolds, Member, National Council on Disability<br />•Fernando Torres-Gil, Member, National Council on Disability<br />•Chester Alonzo Finn, Member, National Council on Disability<br />•Gary Blumenthal, Member, National Council on Disability<br />•Sara Gelser, Member, National Council on Disability<br />•Ari Ne'eman, Member, National Council on Disability<br />•Dongwoo Joseph "Joe" Pak, Member, National Council on Disability<br /><br />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.”<br /><br /><a href="http://www.whitehouse.gov/the-press-office/president-obama-announces-more-key-administration-posts-121609">http://www.whitehouse.gov/the-press-office/president-obama-announces-more-key-administration-posts-121609</a><br /><br />Bios of the nominees are available through the above link.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com2tag:blogger.com,1999:blog-7760164068748230786.post-14845692989704588122009-12-08T11:26:00.005-05:002009-12-10T10:54:27.588-05:00Volunteers Needed to End School AbuseIn 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 <a href="http://edlabor.house.gov/">http://edlabor.house.gov/</a> at 11:00 AM EST on Wednesday, December 9, 2009.<br /><br />As shown in a <a href="http://edlabor.house.gov/documents/111/pdf/testimony/20090519GregKutzTestimony.pdf">report by the U.S. Government Accountability Office</a> 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.<br /><br />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 <a href="mailto:info@autisticadvocacy.org">info@autisticadvocacy.org</a> with the subject line "Restraint and seclusion" in your email.<br /><br /><br /><strong>Update, December 9:</strong> The Justice for All Action Network has issued a <a href="http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=66">press release</a> supporting the legislation.<br /><br /><strong>Second update:</strong> ASAN President Ari Ne'eman was quoted in an <a href="http://blogs.edweek.org/edweek/speced/2009/12/proposed_federal_law_would_reg.html">Education Week article</a> on the proposed legislation, stating that it "is the first of its kind, going far beyond previous efforts to protect students with disabilities."asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com2tag:blogger.com,1999:blog-7760164068748230786.post-42093058850451585622009-12-01T17:48:00.002-05:002009-12-01T17:53:43.558-05:00Employment Discrimination Testimony Transcript<em>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.</em><br /><br /><br />MR. ISHIMARU: Next we have Ari Ne’eman. We look forward to your statement and welcome.<br /><br />ARI NE’EMAN: Thank you very much and thank you for the chance.<br /><br />I represent the Autistic Self Advocacy Network, a group of Autistic people speaking for ourselves.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Thank you very much for your time and I would be glad to answer any questions.<br /><br />MR. ISHIMARU: Thank you very much. Very, very helpful. Are there any questions? No? I think you were pretty clear.<br /><br />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?<br /><br />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.<br /><br />MR. ISHIMARU: Very good. Thank you very much. Very helpful.<br /><br /><br /><em>ASAN has posted the transcript of this testimony </em><a href="http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=65"><em>on our main website</em></a><em>, and it is also available on the </em><a href="http://www.eeoc.gov/eeoc/events/transcript-phil.cfm"><em>EEOC website</em></a><em>. Please feel free to repost it if you so wish.</em>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com7tag:blogger.com,1999:blog-7760164068748230786.post-31215792242585942382009-11-23T13:54:00.003-05:002009-11-23T14:30:04.359-05:00National Town Hall run by Advancing Futures for Adults with AutismThis 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.<br /><br /><br /><em>Nothing about us without us.</em><br /><br />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!<br /><br />Then I found out that the organizational chairs of the entire production were the New York Center for Autism and Autism Speaks.<br /><br /><em>Nothing about us without us.</em><br /><br />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.<br /><br />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.<br /><br />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.<br /><br />“Oh Hi [Mr. E], How are YOU? (Fine) Do you REMEMBER me? (Yes) Let me take you to your table-”<br /><br />At this point, I calmly went about my way and went to my table, as I became tired of the 'special' treatment.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.”<br /><br />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.<br /><br />I was only half right.<br /><br />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.<br /><br />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.”<br /><br />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?<br /><br />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.<br /><br />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:<br /><br />“...and for those of you who have autism who attended today, thank you.”<br /><br />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.<br /><br />Giving out those fliers was my first step towards getting our own voice heard.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com2tag:blogger.com,1999:blog-7760164068748230786.post-80039923031721281792009-11-11T12:55:00.010-05:002009-11-20T11:06:14.401-05:00NYC Protest on November 17<em>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:</em><br /><br /><br />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 <a href="mailto:aneeman@autisticadvocacy.org">aneeman@autisticadvocacy.org</a> or go to the facebook event page here: <a href="http://www.facebook.com/event.php?invites&eid=205191180125">http://www.facebook.com/event.php?invites&eid=205191180125</a><br /><br />Please distribute to your friends, contacts and listservs!<br /><br />WHY ARE WE DOING THIS?<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Link to our Joint Letter Against Autism Speaks, signed by over 60 Disability Rights Groups: <a href="http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61">http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61</a><br /><br /><strong></strong><br /><strong>Update:</strong> A news report on the protest, along with a photo slideshow, was published November 19th in the <a href="http://www.examiner.com/examiner/x-21742-Long-Island-Autism-Examiner~y2009m11d19-ASAN-protest-against-Autism-Speaks-is-highly-successful">Long Island Autism Examiner</a>.<br /><br />Here is a video of an Autistic self-advocate explaining the situation to Jerry Seinfeld (first posted by Socrates at <a href="http://the-newrepublic.blogspot.com/2009/11/i-am-autism-seinfeld-confronted.html">The New Republic</a>):<br /><br /><object width="348" height="216"><param name="movie" value="http://www.youtube.com/v/iH2otGcEfYU&hl=en_US&fs=1&rel=0&border=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/iH2otGcEfYU&hl=en_US&fs=1&rel=0&border=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="348" height="216"></embed></object>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com6tag:blogger.com,1999:blog-7760164068748230786.post-20685472693034624562009-11-02T10:58:00.006-05:002009-11-02T11:04:47.515-05:00Scholarships Available in Ohio<em>The following announcement was forwarded to us by Barb Yavorcik of the Autism Society of Ohio -- thanks!</em><br /><span style="font-size:85%;"></span><br /><h3><span style="COLOR: rgb(1,1,1)">Stipends and scholarships available for STEM students with disabilities</span></h3><p class="ecxMsoNormal">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 <a title="http://nisonger.osu.edu/osaa/" href="http://nisonger.osu.edu/osaa/" target="_blank"><span style="color:#0068cf;">http://nisonger.osu.edu/osaa/</span></a>. Contact: <span style="color:#0068cf;"><a href="mailto:osaa@osu.edu">osaa@osu.edu</a></span></p>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com2tag:blogger.com,1999:blog-7760164068748230786.post-86866192651082128442009-10-18T18:43:00.013-04:002012-03-17T09:55:20.043-04:00Why Autism Speaks Does Not Speak for Us<span style="font-style: italic;">The article below is an updated version of a previous <a href="http://asancentralohio.blogspot.com/2009/08/why-autism-speaks-does-not-speak-for-us.html">post on the ASAN Central Ohio blog</a>. It may be copied for use on protest flyers and other materials.</span><br /><br /><br />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.<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#1">[1]</a> Autism Speaks' co-founder Suzanne Wright made the organization's eugenic aims equally plain, to "eradicate autism for the sake of future generations."<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#2">[2]</a> There is a page on Autism Speaks' website supporting the efforts of James Watson and others "to identify autism susceptibility genes."<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#3">[3]</a> Watson resigned in disgrace from his position as the Chancellor of Cold Spring Harbor Laboratory after making grossly racist remarks,<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#4">[4]</a> and he has long advocated genetically enhancing children and eugenically exterminating people with cognitive disabilities, which he characterizes as "curing stupidity."<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#5">[5]</a><br /><br />Autism Speaks created a video in 2006 entitled Autism Every Day, which the producer admitted was staged to show negative images.<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#6">[6]</a> In one horrific scene, a mother described her thoughts of murdering her autistic daughter while the child was actually in the room.<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#7">[7]</a> 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.<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#8">[8]</a> Television ads by Autism Speaks have compared the odds of a child being autistic to the odds of a child being struck by lightning, <a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#9">[9]</a> or killed in a car wreck, implying none too subtly that a child might as well be dead as autistic.<br /><br />Two prominent figures at Autism Speaks, communications executive Alison Tepper Singer <a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#10">[10]</a> and scientific advisor Dr. Eric London,<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#11">[11]</a> 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.<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#12">[12]</a> Dr. London warned bluntly in his resignation letter that "[i]f Autism Speaks' misguided stance continues, there will be more deaths…"<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#13">[13]</a><br /><br />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,<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#14">[14]</a> 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.<br /><br />Over 60 disability rights organizations have signed a joint letter<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#15">[15]</a> 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,<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#16">[16]</a> 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.<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#17">[17]</a> The joint letter expressed community outrage following Autism Speaks' release of a video called I Am Autism,<a href="http://asansouthwestohio.blogspot.com/2009/10/why-autism-speaks-does-not-speak-for-us.html#18">[18]</a> 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.<br /><br /><span style="font-weight: bold;">References:</span><br /><a name="1"></a>[1] MSNBC, Feb. 23, 2005; <a href="http://www.msnbc.msn.com/id/7013251" target="_blank">http://www.msnbc.msn.com/id/7013251</a><br /><a name="2"></a>[2] Parade Magazine, Jan. 27, 2008; <a href="http://www.parade.com//articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything" target="_blank">http://www.parade.com//articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything</a><br /><a name="3"></a>[3] <a href="http://www.autismspeaks.org/inthenews/wrights_cold_spring_harbor.php" target="_blank">http://www.autismspeaks.org/inthenews/wrights_cold_spring_harbor.php</a><br /><a name="4"></a>[4] <a href="http://www.independent.co.uk/news/science/fury-at-dna-pioneers-theory-africans-are-less-intelligent-than-westerners-394898.html" target="_blank">http://www.independent.co.uk/news/science/fury-at-dna-pioneers-theory-africans-are-less-intelligent-than-westerners-394898.html</a><br /><a name="5"></a>[5] Sun-Herald, March 2, 2003; <a href="http://www.smh.com.au/articles/2003/03/01/1046407801233.html" target="_blank">http://www.smh.com.au/articles/2003/03/01/1046407801233.html</a><br /><a name="6"></a>[6] WireTap Magazine, July 11, 2006; <a href="http://www.alternet.org/wiretap/38631" target="_blank">http://www.alternet.org/wiretap/38631<br /></a><a name="7"></a>[7] <a href="http://www.youtube.com/watch?v=C7NTfZzS9b8" target="_blank">http://www.youtube.com/watch?v=C7NTfZzS9b8</a><br /><a name="8"></a>[8] Town & Country Magazine, August 2006; <a href="http://www.autismspeaks.org/docs/Town_and_Country.pdf" target="_blank">http://www.autismspeaks.org/docs/Town_and_Country.pdf</a><br /><a name="9"></a>[9] <a href="http://www.metacafe.com/watch/1086177/autism_awareness_lightning" target="_blank">http://www.metacafe.com/watch/1086177/autism_awareness_lightning</a><br /><a name="10"></a>[10] Newsweek, Jan. 19, 2009; <a href="http://www.newsweek.com/id/179998" target="_blank">http://www.newsweek.com/id/179998</a><br /><a name="11"></a>[11] Science, July 10, 2009; <a href="http://www.sciencemag.org/cgi/content/full/325/5937/135-a?ijkey=vWdUsXAiJkdCE&keytype=ref&siteid=sci" target="_blank">http://www.sciencemag.org/cgi/content/full/325/5937/135-a?ijkey=vWdUsXAiJkdCE&keytype=ref&siteid=sci</a><br /><a name="12"></a>[12] Discover Magazine, June 2009; <a href="http://discovermagazine.com/2009/jun/06-why-does-vaccine-autism-controversy-live-on" target="_blank">http://discovermagazine.com/2009/jun/06-why-does-vaccine-autism-controversy-live-on</a><br /><a name="13"></a>[13] <a href="http://www.autismsciencefoundation.org/ericlondon.html" target="_blank">http://www.autismsciencefoundation.org/ericlondon.html</a><br /><a name="14"></a>[14] <a href="http://www.youtube.com/watch?v=7rVX_nSLFtg&feature=channel_page" target="_blank">http://www.youtube.com/watch?v=7rVX_nSLFtg&feature=channel_page</a><br /><a name="15"></a>[15] <a href="http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61" target="_blank">http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61</a><br /><a name="16"></a>[16] <a href="http://www.autismspeaks.org/docs/Autism_Speaks_Annual_Report_2008.pdf" target="_blank">http://www.autismspeaks.org/docs/Autism_Speaks_Annual_Report_2008.pdf</a><br /><a name="17"></a>[17] <a href="http://www.disabilityscoop.com/2009/09/10/autism-speaks-pay/4893/" target="_blank">http://www.disabilityscoop.com/2009/09/10/autism-speaks-pay/4893/</a><br /><a name="18"></a>[18] <a href="http://www.time.com/time/health/article/0,8599,1935959,00.html">http://www.time.com/time/health/article/0,8599,1935959,00.html</a>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com2tag:blogger.com,1999:blog-7760164068748230786.post-74437821040994763802009-10-12T13:35:00.010-04:002009-10-12T15:06:33.676-04:00Autism Speaks in Columbus: Let Them Eat Cure<p><em>By Meg Evans, ASAN Southwest Ohio Chapter Director.</em></p><p>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 <a href="http://www.youtube.com/watch?v=sUBfyfjIccA">YouTube video</a> of the protest, and more details and photos can be found on the <a href="http://asancentralohio.blogspot.com/2009/10/autistic-community-protests-autism.html">ASAN Central Ohio blog</a>.<br /><br />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.<br /><br /><br /><img src="http://i265.photobucket.com/albums/ii202/asansouthwestohio/ASAN_OSU_protest.gif" /><br /><em><span style="font-size:85%;">Image: Protesters hand out flyers at Autism Speaks walk<br /></span></em><br /><br />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.<br /><br />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."</p>asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com4tag:blogger.com,1999:blog-7760164068748230786.post-68087505779323048942009-10-10T00:29:00.003-04:002009-10-10T00:34:20.971-04:00Protest in Columbus Against Autism Speaks<em>ASAN Central Ohio/Ohio State University will be protesting an Autism Speaks walk on Sunday. This information was crossposted from the </em><a href="http://asancentralohio.blogspot.com/2009/10/protest-against-autism-speaks-walk-for.html"><em>ASAN Central Ohio blog</em></a><em>.</em><br /><br />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.<br /><br /><strong>Campus map & driving directions:</strong> <a style="COLOR: rgb(85,136,170); TEXT-DECORATION: none" href="http://www.osu.edu/map/building.php?area=&building=191" target="_blank">http://www.osu.edu/map/building.php?area=&building=191</a><br /><br /><strong>Note on parking:</strong> 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!<br /><br />Please contact us at <a style="COLOR: rgb(85,136,170); TEXT-DECORATION: none" href="mailto:asan.ohiostate@gmail.com">asan.ohiostate@gmail.com</a> with questions.asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0tag:blogger.com,1999:blog-7760164068748230786.post-77913107206820048232009-10-07T10:36:00.003-04:002009-10-07T10:41:32.863-04:00Letter to the Sponsors, Donors and Supporters of Autism Speaks<i>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 <a href="http://www.ipetitions.com/petition/AutismSpeaks">http://www.ipetitions.com/petition/AutismSpeaks</a>. Please feel free to distribute this to your networks. </i><br /><br /><br />To the Sponsors, Donors and Supporters of Autism Speaks:<br /><br />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>“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."</i><br /><br />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.<br /><br />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.<br /><br /><b>Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum:</b> 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.<br /><br /><b>Very little money donated to Autism Speaks goes toward helping Autistic people and families:</b> 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.<br /><br /><b>Autism Speaks excludes the people it pretends to represent:</b> 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.<br /><br />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.<br /><br />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.<br /><br /><b>National and International Organizations:</b><br /><br /><br /><br />The Autistic Self Advocacy Network<br /><br />Self-Advocates Becoming Empowered (SABE)<br /><br />The National Council on Independent Living (NCIL)<br /><br />ADAPT<br /><br />TASH<br /><br />The Arc of the United States<br /><br />Disability Rights and Education Defense Fund (DREDF)<br /><br />The National Youth Leadership Network (NYLN)<br /><br />Autism Network International (ANI)<br /><br />The Autism National Committee<br /><br />Little People of America (LPA)<br /><br />Not Dead Yet<br /><br />The Bazelon Center for Mental Health Law<br /><br />National Coalition for Disability Rights/ADA Watch<br /><br />The Autistic Spectrum Partnership In Research and Education (AASPIRE)<br /><br />Mothers From Hell 2<br /><br />The Center for Self-Determination<br /><br />Disability Rights Advocates<br /><br />Kids As Self-Advocates (KASA)<br /><br />Service Dog Central<br /><br />MHONA International<br /><br />The National Empowerment Center<br /><br />Disabled Youth Collective (DYP)<br /><br />The National Coalition of Mental Health Consumer/Survivor Organizations<br /><br />Feminist Response in Disability Activism (FRIDA)<br /><br />The ICORS Asperger’s Listserv<br /><br /><br /><br /><b>International:</b><br /><br /><br /><br />Autistic Self-Advocacy Network-Australia<br /><br />Autism Rights Group Highland (in Scotland, United Kingdom)<br /><br />The Autistic Community of Israel<br /><br />Autreach IT in the United Kingdom<br /><br />The Southwest Autistic Rights Movement (SWARM) in the United Kingdom<br /><br />The London Autistic Rights Movement (LARM)<br /><br />The Aspergers Network in the United Kingdom<br /><br /><br /><br /><b>Local, State, and Regional Organizations:</b><br /><br /><br /><br />ADAPT-Montana<br /><br />The Center for Disability Rights in Rochester, NY<br /><br />The Regional Center for Independent Living in Rochester, NY<br /><br />The Michigan Disability Rights Coalition<br /><br />The Institute for Disability Access in Austin, Texas<br /><br />The Maryland Coalition for Inclusive Education<br /><br />The Paraquad Center for Independent Living in St. Louis, Missouri<br /><br />The Lonesome Doves in Pennsylvania<br /><br />TASH-New England<br /><br />Together Enhancing Autism Awareness in Mississippi (TEAAM)<br /><br />Wesleyan Students for Disability Rights at Wesleyan University in Connecticut<br /><br />Tangram in Indianapolis, Indiana<br /><br />The Disability Activists Work Group (DAWG) in Oregon<br /><br />APSE-Oklahoma<br /><br />North Carolina Disability Action Network<br /><br />Access Living of Metropolitan Chicago in Chicago, Illinois<br /><br />Topeka Independent Living Resource Center in Topeka, Kansas<br /><br />Disabilityworks in Chicago, Illinois<br /><br />Ardinger Consultants & Associates in Maryland<br /><br />Statewide Parent Advocacy Network of New Jersey<br /><br />Wisconsin Family Assistance Center for Education, Training and Support<br /><br />Aspergers Young Adults of North Alabama (AYANA)<br /><br />Access to Independence of Cortland County, Cortland, New York<br /><br />Youth Power, New York<br /><br />The New York Association on Independent Living<br /><br />Self-Advocates As Leaders (SAAL) in Oregon<br /><br />Green Country Independent Living Resource Center<br /><br />Elementary Inclusive Education Program at Teachers College, Columbia University<br /><br />Beyond Compliance Coordinating Committee at Syracuse University<br /><br />Green Mountain Self-Advocates in Vermont<br /><br />Advance Youth Leadership Power in Chicago, Illinois<br /><br /><br /><br />--<br />Ari Ne'eman<br />President<br />The Autistic Self Advocacy Network<br />http://www.autisticadvocacy.org<br />info@autisticadvocacy.org<br />732.763.5530asansouthwestohiohttp://www.blogger.com/profile/10866989362877838707noreply@blogger.com0