Tuesday, December 30, 2008
Tomorrow, Wednesday the 31st of December, is the last day for voting. There are several proposed ideas that would be useful to autistic citizens, including the following:
Fully Fund Medicaid Waivers for the Developmentally Disabled
Replace No Child Left Behind With a Strong Education Policy
Independence and Services for Disabilities and Autism
You must register and sign in with a Change.org account in order to vote in the competition.
Thursday, December 11, 2008
We provided information about Ohio's Medicaid health insurance program for workers with disabilities. Ohio has a buy-in program that was created to enable Ohioans with disabilities to work and still have access to Medicaid health care coverage. The program covers both part-time workers and full-time workers. Depending on a worker's income, premium payments may or may not be required.
In addition, we advised her to check with her health insurance company to find out if her policy allowed continuing coverage for adult children with disabilities after the usual age cutoff.
Saturday, November 1, 2008
A new yahoo group has just been created to be open exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. It is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.
The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.
To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.
For more information, contact list moderator Dora Raymaker at firstname.lastname@example.org.
Please pass this information along to any adolescents and teens you know who would be interested!
Thursday, October 16, 2008
The chart incorrectly lists universal prenatal screening for autism among the Obama campaign's positions. In fact, there is no prenatal test for autism, and Sen. Obama does not advocate funding the development of such a test. The Obama campaign's position paper on autism calls for universal screening of two-year-old children.
The chart accurately identifies several significant policy differences between the candidates, including their positions on making community services available to people with disabilities. Sen. Obama is a co-sponsor of the Community Choice Act and of the Community Living Assistance, Services and Supports (CLASS) Act, whereas Sen. McCain is opposed to both.
More information regarding Sen. Obama's disability platform can be found at http://www.barackobama.com/issues/disabilities. Sen. Obama's campaign released this plan last year. No comparable position statements have been provided by Sen. McCain's campaign.
The candidates' positions were recently discussed at a Disability Forum in Athens, Ohio on October 12th. No representatives of Sen. McCain's campaign attended the event. Doug Rogers, a disability vote organizer for Sen. Obama's campaign, was present. Donna M. Jones, Sen. McCain's national coordinator for disability issues, sent an e-mail to one of the event organizers explaining that Sen. McCain's campaign does not currently have a disability policy. The e-mail, which was publicly read at the event, stated that no further information was available on when Sen. McCain's campaign might be releasing a platform discussing issues that relate to people with disabilities.
Update: The Ohio Legal Rights Service has corrected the error in its candidate positions chart.
Wednesday, October 1, 2008
The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum. The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC's decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens' human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH's $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee's "sense of urgency" when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals' processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, "We know that behavioral treatments make some difference but it's a relatively small amount of difference."
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children's' needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes "costs to society" and uses the disrespectful rhetoric of "burden." The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because "portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them." We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as "a devastating disorder." However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as "impairments," but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: "…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results." We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
Barbara Trader, MS
Sharisa Joy Kochmeister
Autism National Committee
The Autism Acceptance Project
Compiled by ASAN Board Member Paula C. Durbin-Westby
Tuesday, September 30, 2008
It is important that the IACC hear from as many of us as possible! Sullivan has prepared a quick and easy form for submitting your comments, with helpful suggestions for points of interest to autistic self-advocates and other neurodiversity supporters. If you have not yet responded, please take a few minutes to read the form and submit your suggestions for U.S. government autism research priorities. You need not include a detailed discussion in each section, if you don't have the time; what matters is to get our perspective across.
Wednesday, September 17, 2008
ASAN would like to remind the autistic community of the upcoming deadline for comments to the Interagency Autism Coordinating Committee (IACC). We are asking people to write and send comments to the IACC and, if possible, also post your comments on blogs, forums, lists, etc., in the autistic community. Here is a list of helpful talking points prepared to assist our advocates in putting together comments. Many thanks to Paula of ASAN Virginia for her time and effort!
Below is a document of considerable importance. Right now, the Interagency Autism Coordinating Committee is seeking public comment on issues relating to service-delivery. In our conversations with NIMH, we've heard a considerable willingness to move closer towards our position, if supported by a sufficiently strong public comment. The deadline on this is this coming Friday, the 19th. If people would be willing to post this on their blogs and also post their personal e-mails to NIMH on their blogs, we'd appreciate the help in turning people out to this. The initial version of this that has gone out on listservs and so on did not include the contact info to send the public comments to - an error on our part - but we've added it here. People should direct their comments, stories and so on to email@example.com by September 19th, 2008.
More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html. I'd also like to add that this is the first of two public comments in relation to the IACC that will be due this month - we'll be sending out a primer on the second call for comments on the research Strategic Plan that will be due on the 30th. I have to stress here that volume is a major priority in what we want as far as responses go - we want lots of them and from lots of people. You don't need extensive citations or anything of that nature - just send something expressing your support for quality of life, communication and similarly important research priorities. This is a top priority for us and we hope you can help us bring out our population - again, the quantity of our response will indicate to NIMH the extent to which the neurodiversity/autistic self-advocacy community should be viewed as a major stakeholder.
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
ASAN BACKGROUND AND TALKING POINTS ON IACC REQUEST FOR INFORMATION ON SUPPORTS AND SERVICES
The Interagency Autism Coordinating Committee (IACC) has put out a Request for Information (RFI) to seek input from stakeholders (those interested in autism), including autistic individuals, about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.
The RFI is due no later than Sept. 19, 2008, seven days from now. People should direct their comments to firstname.lastname@example.org by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html.
This RFI provides an excellent opportunity for self-advocates and allies to make our voices heard. Members of the IACC are very interested in hearing from individuals on the autism spectrum. They've heard extensively from the anti-vaccine crowd, from parents, experts, researchers, and from people on the autism spectrum.
More input from autistic adults at this point, when the IACC is coming close to finalizing a budget and mission statement for the Strategic Plan, will mean more attention to the issues we consider to be most important.
The focus of this particular RFI on services and supports is an area that many autistic adults have much to say about; here is a chance to say it directly to the committee that will be allocating resources to various areas. Currently, funding is skewed toward genetic research and research into treatments and interventions.
In the time that autistic individuals have been submitting comments and testifying at IACC meetings, some positive change has been noted in the amount of funds earmarked for research into services and supports.
It is important that the IACC hear from everyone who is able to comment because part of the task of assessing importance is to determine the extent of the population that has an interest in the decisions that the IACC will make.
The IACC decides levels of funding for research into supports and services, but does not fund supports and services themselves.
The Autistic Self Advocacy Network has developed these talking points to assist individuals in writing statements to IACC on the topic of supports and services.
The RFI lists a number of areas of concern that can be addressed. You do not have to address every topic. You can pick the ones that are the most important to you. Feel free to change the wording so that it reflects your most important priorities.
Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up-to-date and have access to information, training, technological resources such as AAC, and other resources.
Health and medical services (including dental):
Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.
Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost-effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.
Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.
Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.
Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community-based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.
Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel. Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.
Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non-autistic-related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community-based participatory research can be invaluable in determining the best ways to access health and other care.
Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.
Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one-size-fits-all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.
Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.
Thursday, September 4, 2008
The role of the Interagency Autism Coordinating Committee (IACC), created in 2006, is to help formulate the direction of future scientific research about autism in the U.S.
The IACC has indicated its willingness to hear from people on the autistic spectrum by including us in their invitation for comments, and by including an adult on the autistic spectrum on their board.
The IACC is currently asking for comments (Requests for Information) on two different topics. These requests for comments are our chance as individuals on the autistic spectrum to have our voices heard by the IACC. This is our chance to help ensure that future research about autism is scientifically sound, ethical, and of real benefit to people on the spectrum. The number of responses really matters; please respond to the requests if you are able.
REQUEST FOR INFORMATION #1
Topic: Priority Questions for Supports and Services
Deadline: 19 September, 2008
The IACC would like to know what you consider to be the most important, or highest priority, research questions related to services and supports for people on the autistic spectrum. This includes any high priority questions or concerns related to education, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
This information will be used by the IACC to guide which autism research projects get funding.
To get more information about the request for information, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html
The deadline for comments is 19 September, 2008, so please make your comments prior to that date.
REQUEST FOR INFORMATION #2
Topic: Comments on Draft of Strategic Plan
Deadline: 30 September, 2008
The IACC has finished drafting a plan for autism research, and is now asking for comments on that plan. The best way for you to let IACC know that you feel their draft plan could be of benefit to individuals on the spectrum is to contact the IACC with your own thoughts on the draft plan.
A summary of what is proposed in the plan is as follows:
+ Children with a higher probability for ASD will be identified by 24 months and receive appropriate assistance.
+ Discover how ASD affects development, which will lead to targeted and personalized interventions.
+ Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.
+ Interventions will be developed that are effective for reducing both core and associated difficulties, for building adaptive skills, and for preventing the disabilities associated with ASD.
+ Communities will implement high quality, evidence-based and cost-effective services and supports across the lifespan for people with ASD.
+ Advances in intervention, education and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.
To get more information about the plan, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html.
The deadline for comments is 30 September, 2008, so please make your comments prior to that date.
Thursday, August 28, 2008
SABE is a national self advocacy organization of people with disabilities. Its goals are to empower self advocates throughout the United States, to ensure that people with disabilities know their legal rights, and to replace institutions with meaningful community supports for Americans with developmental disabilities.
Friday, August 15, 2008
Our local chapters will continue to blog about local issues and to post general information of interest to our members and readers.
Click here to visit the new blog.
Monday, August 11, 2008
For more discussion of the disability community's response to Tropic Thunder, visit Patricia E. Bauer's disability advocacy blog.
Many thanks to Christschool for creating the video.
Sunday, August 3, 2008
Mr. Stewart's willingness to speak out in defense of autistic children and to advocate the use of respectful language is most commendable. However, although the column was clearly well-intentioned, it contained a number of common misconceptions about autism, as discussed in the following letter:
Dear Mr. Stewart,
I am a member of the Southwest Ohio chapter of the Autistic Self Advocacy Network (ASAN). ASAN is an international organization that seeks to improve the representation of the autistic community in public policy discussions, to advance the autistic culture movement, and to raise awareness of civil rights issues that affect the autistic population.
I appreciate your taking the time to write a column condemning the recent hate speech against autistic children. However, I would like to clear up a few common misconceptions about autism that I noticed in the column. First of all, autism is not a disease or illness, and an autistic person should not be described as "sick." Autism is a developmental disability that is characterized by delays and/or differences in speech and communication.
While I recognize that the parent quote mentioned in your column does not necessarily reflect your personal views, please be aware that sensational phrases such as "...looked into the eyes of a child with autism and seen the heartbreaking emptiness" have the unfortunate effect of perpetuating disability prejudice. A child with a speech delay should not be presumed to lack intelligence or awareness of his surroundings; he simply hasn't learned how to talk yet.
Research has shown that about 90 percent of children on the autistic spectrum develop speech by age nine (C. Lord et al, "Trajectory of language development in autistic spectrum disorders," in Developmental Language Disorders: From Phenotypes to Etiologies, 2004). As for the small minority who do not develop speech, many learn to communicate with others through sign language and/or typing, in much the same way that a Deaf person who could not speak would communicate.
Please consider providing a correction to your article to clear up any potential misunderstandings among your readers.
Saturday, August 2, 2008
300 West 57th St.
New York, NY 10019
I am a 25-year-old autistic woman. I have closely followed your series on autism; and, to be honest, I was disappointed.
People are afraid of what they do not understand, and the way autism is portrayed worsens the panic. The isolation Nicole felt was a product of this fear, of the idea that autism is something foreign and mysterious and horrifying. Autistic people and their families are isolated much more by fear than we ever were by autism.
The article seems to say that autism has only two possible outcomes: A cure, or a tragedy. This is not true. I am autistic, and I am happy. I contribute to society. I have always loved my family, even when I wasn't good at saying it. Autism is a part of my personality; without it, I would not be myself.
We do not need to be "saved from autism"; we need what every other person needs--a chance to learn. Teach us to communicate; teach us to interact; but above all, accept us and our differences.
Yes, we think differently; we act differently; but they are differences that anyone can understand if they just take the time to listen to us. Fundamentally, we are simply human, like anyone else.
Sunday, July 27, 2008
Robert David Hall, who plays the part of Dr. Albert Robbins, the coroner on the popular television show CSI, spoke about his experiences as an actor with a disability and how hard it was for him to find roles that were not just stereotypes. He is the National Chairman of the Performers with Disabilities Caucus and seeks to bring about greater visibility of the disability community as a political constituency.
News director Mike Thompson of WOSU introduced the forum's moderator, broadcast journalist Judy Woodruff, who is currently working as a senior correspondent and political editor for the PBS program NewsHour with Jim Lehrer. A panel discussion then began, addressing the question of what is at stake for people with disabilities in this year's election.
John Hannah, Vice President of The Arc of Ohio, spoke about the need for better education and self-determination for people with developmental disabilities, calling for representation of self-advocates at the highest levels of policymaking groups and committees. Rebecca Hare, a project coordinator for the National Consortium on Leadership and Disability for Youth at the Institute for Educational Leadership, stated that "the American dream is not ADA-compliant yet" and spoke about the failure of many school districts to provide a meaningful education to students with disabilities; all too often, she said, these students receive "special diplomas" without having met state graduation requirements and are rejected by employers as a result. Cynthia Owens of the Oregon Council on Developmental Disabilities described her son's success in transitioning into the workforce, aided by SSI work incentives, and she advocated for a simpler benefit system that would be easier for recipients to navigate; with regard to the increased number of students with autism spectrum diagnoses, she stated that there should be more training for teachers and more funding for classroom aides. Paul J. Tobin, President and CEO of United Spinal Association, discussed medical care and benefits for injured veterans and the need to hire more adjudicators to clear up the claims backlog.
In response to a question from Judy Woodruff about funding constraints and disability services, the panelists agreed that these services should not be seen simply as a cost; rather, ensuring that all Americans are properly educated and productively integrated into the community would be a significant investment in the future. Mr. Tobin also pointed out that this question would not even be asked if the discussion had to do with services that were necessary for other groups of people.
Mike Strautmanis of the Democratic National Committee stated that exclusion makes everyone's lives poorer. He introduced Sen. Tom Harkin of Iowa, a long-term advocate of disability rights, who appeared as a surrogate for Sen. Barack Obama.
Sen. Harkin, who was the chief sponsor of the Americans with Disabilities Act, suggested that voters should consider not only the presidential candidates themselves but also their potential Supreme Court appointments. In the years since the passing of the ADA, Sen. Harkin explained, its original coverage was greatly constricted by Supreme Court decisions that redefined people as nondisabled—and therefore not protected from discrimination—if they could function effectively with medication or assistive technology. Although Sen. Harkin and others in the Senate are working on amendments to the ADA that will restore the original protections (the ADA Amendments Act already has passed in the House of Representatives), Sen. Harkin stated that an unfriendly Supreme Court made up of conservative activists could once again interpret the legislation to provide less coverage than Congress intended.
Sen. Harkin spoke about the importance of having a full-time advisor for disability issues, as Sen. Obama has pledged to do, in order to ensure that disability issues are not overlooked in making policy decisions.
The Community Choice Act, sponsored by Sen. Harkin and co-sponsored by Sen. Obama, was described as a means of correcting a structural bias in the Medicaid system that has the effect of forcing people into nursing homes and institutions. The CCA will provide funding for personal assistants and other supports and services necessary to allow Medicaid recipients with disabilities to live productively in the community. Sen. Harkin also noted that the CCA will help injured veterans.
Sen. Harkin stated that it is in America's economic interest to enable people with disabilities to live and work in the community and that it is also a moral imperative to do so. He also commented on the lack of accessible housing and proposed that federal housing and mortgage assistance programs should include accessibility requirements.
After a short break with more music, Sen. John McCain appeared by video from Arizona for a question-and-answer segment with Judy Woodruff. He spoke of his support for the Disability Vote Project and stated that he believes the exclusion of people with disabilities from community participation is a loss to America. After mentioning that he was a principal co-sponsor of the ADA, Sen. McCain pledged to support the ADA Amendments Act.
Sen. McCain proposed that the Veterans Administration should focus on providing specialized care for service-related conditions and that veterans should obtain their routine health care elsewhere, with a health insurance card. He suggested reducing excessive spending in other areas of government to make more funds available for veterans' health care.
Briefly discussing an Arizona program that funds home health care, Sen. McCain stated that he generally favors the idea of community choice. In response to a direct question from Judy Woodruff, however, Sen. McCain said that he does not support the Community Choice Act. He indicated that he believes it would be too expensive and the federal government has been spending too much.
Responding to Sen. Harkin's comment that the ADA Amendments Act might end up being eroded by decisions from conservative members of the Supreme Court, as the original ADA had been, Sen. McCain stated that he did not believe the Supreme Court was the problem. Rather, Sen. McCain attributed the judicial narrowing of protections under the ADA to a failure on the part of Congress to write the law in specific enough terms.
Sen. McCain also spoke about bipartisan Social Security reform.
After the question-and-answer session ended, a public service announcement "Get Out The Vote," produced by Self Advocates Becoming Empowered, was shown.
Darren Jernigan, who is a member of the Metro Nashville City Council and the Director of Government Affairs at Permobil, Inc., spoke about how much impact a small number of involved and committed citizens can have in an election. He urged those attending the forum to get out the vote, to volunteer to work on a campaign, and to contribute to a candidate.
Jim Dickson and Andrew Imparato of AAPD also spoke about the importance of the issues in this year's election to the disability community.
ASAN Southwest Ohio would like to thank AAPD, Sen. Obama's campaign, Sen. McCain's campaign, Judy Woodruff, Robert David Hall, and the other forum participants and sponsors for helping to clarify the issues facing the disability community in the upcoming election.
A video of the forum is available from AAPD.
Thursday, July 24, 2008
As many of you have already heard, this past week talk radio personality Michael Weiner, better known on the air as Michael Savage, made several outrageous remarks in regards to autism, including, "Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket…I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot." A full transcript of his statements can be found here. Remarks like these spread ignorance about autism and threaten to return us to a previous era where parents were blamed and labeled as "refrigerator mothers" for having autistic children. Not only have Michael Weiner and Talk Radio Networks refused to retract these outrageous comments - they have added to them by claiming, unsupported by science of any kind, that the autism spectrum is an overdiagnosed medical condition. This is part of a broader pattern of statements attacking people with disabilities and our families. It requires a strong response.
As a result of this continued attack against autistic people and the broader disability community, the Autistic Self-Advocacy Network has joined with over a dozen national and regional disability rights organizations to call on the sponsors of Talk Radio Networks and the Savage Nation to pull their support. Together, we have issued a strong joint statement calling for an ad boycott. In addition, we've collected contact information for several of the major sponsors of Talk Radio Networks in order to empower our community to take further action. We urge you to use the information below to write, call and e-mail these sponsors and tell them why it is imperative they join companies like Aflac and Telesouth Communication that have already pulled their ads in response to these hateful remarks. There are over 50 million people with disabilities in the United States with approximately $200 billion in disposable income. It is time for us to make our voices heard.
Below you will find contact information for Talk Radio Networks' largest sponsors and a sample letter for you to use as a reference point in your e-mails and phone calls. We will be keeping an updated list on our website here and will post updates and changes to contact information as new information becomes available. In addition, if you would like to express your support for the disability community's joint statement on this issue, you can do so by signing our petition here. Organizations wishing to become signatories to our joint statement should contact us at email@example.com. Please distribute this message to your networks and feel free to repost.
"To Whom It May Concern:
As a member of the disability community, I am outraged by the recent comments made by Talk Radio Networks' host Michael Alan Weiner, also known as Michael Savage, stating that autism is "a fraud...a racket...In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is." Not only have these comments not been retracted but Talk Radio Networks continues to stand by Michael Weiner as he continues spreading public misinformation about autism. Autism is a very real developmental disability affecting millions of Americans. Public ignorance and prejudice against people with disabilities represent one of the most significant obstacles to full access and inclusion of people with disabilities throughout society. I urge you to take immediate action and pull your financial support from Talk Radio Networks and The Savage Nation Radio Show in response to these hateful comments."
VP Advertising/Sales Mike Shaw
Phone: 212 456-7272
VP Public Relations Kevin Brockman
Phone: 818 460-7756
Acura Public Relations
Mike Spencer, 310-783-3165
P.O. Box 981540
El Paso, TX 79998-1540
730 South Powerline Rd.
Deerfield Beach, FL 33442
Campbell Soup Company
Camden, NJ 08103-1701
851 West Cypress Creek Road
Fort Lauderdale, FL 33309, United States
Americas Senior PR Manager
Phone: (786) 449-3740
Director, Corporate Communications
Phone: (954) 267-2977
CEO Charlie Ergen: (303) 723-1010
CEO assistant: (303) 723-1005
EchoStar Satellite L.L.C.
Attn: Corporate Communications
9601 S. Meridian Blvd.
Englewood, CO 80112
Senior Vice President Corporate Communications
General Motors, Northeast Communications,
Stockholder line: 313-667-1500
Gallo Winery Spokesperson
Nestlé Purina PetCare:
Simon & Schuster:
Paul Capelli, 508-253-8530
SUBWAY® Public Relations
Les Winograd Ext. 1683
Kevin Kane Ext. 1329
Director, Press and Public Relations
Phone: 703 364 7650
Fax: 703 364 7071
Thank you for your support and please distribute. Our combined activism has and will continue to help us create a world that respects, includes and supports people with disabilities throughout society. Remember, nothing about us, without us!
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
Sunday, July 20, 2008
We discussed the efforts made by ASAN on both a national and international level to develop meaningful community organizations and to promote the involvement of autistic citizens in public policy discussions. Having an ASAN chapter in Columbus will be helpful from a political standpoint because it is the state capitol and the members of the Central Ohio chapter will be able to get involved in committees and other state government activities.
Community organizations for autistics also are important because the younger generation can benefit from the experience of older autistics, through both formal mentoring programs and informal discussions. Young people need to know that although our society often is overly rigid in expecting everyone to have certain kinds of skills, having a different set of skills does not mean that there is something wrong with a person; rather, that is diversity. Today's autistic youth need to be helped to overcome the discouragement that many of them have faced and, instead, to find encouragement.
We talked about the need for better and more inclusive programs in the schools. Sometimes autistic children are treated as if they are disruptive and a nuisance, when the real problems are lack of understanding, negative expectations, and failure to provide simple accommodations. The effect of the classroom on the child should be considered, not just the child on the class.
ASAN Southwest Ohio has offered to help with setting up a new blog for the ASAN Central Ohio chapter.
edit: The new blog is at http://asancentralohio.blogspot.com
Wednesday, July 16, 2008
ASAN Southwest Ohio sent the following letter to Mr. McConnell to express our concerns. For those who may also wish to contact Mr. McConnell about the program, firstname.lastname@example.org is the address where he can be reached.
Dear Mr. McConnell,
We are writing to you on behalf of the Southwest Ohio chapter of the Autistic Self Advocacy Network (ASAN). ASAN is an international organization that seeks to improve the representation of the autistic community in public policy discussions, to advance the autistic culture movement, and to raise awareness of civil rights issues that affect the autistic population.
Regarding your July 14th discussion of autistic children at restaurants, we are concerned that the tone of the comments suggested that some listeners might have thought you were advocating exclusion of autistic children from public establishments. Although we realize that this probably was not the intended message, we would appreciate it if you could issue a clarification to ensure that your listeners do not have the wrong impression.
Autism is not a static condition. Autism at age 5 does not look the same as autism at age 25 or age 50. Many autistic children outgrow their behavioral problems and become successful later in life. Autistic children, like any other young children, need opportunities for social interaction in public places so that they can learn proper behavior and become integrated into the community. Placing autistic children in restrictive and isolating environments only causes the child's social skills to deteriorate. This applies to restaurants, churches, and even mainstream education.
Also, forcibly removing someone else's autistic child from a public place is counterproductive on many levels. In addition to depriving the child of much-needed social interaction, it will increase the child's stress level and make the situation much worse. The child's feelings should be considered, in addition to the feelings of the other patrons. The child is indeed under stress, likely due to sensory overload, and a more gentle approach will help relieve some of this stress and make the situation better for everyone.
Perhaps the most dangerous thing an autistic child can learn when forcibly removed from a public place is that a stranger apparently has the right to discipline someone else's children.
Please help us to spread a message of inclusion and tolerance.
Sunday, July 13, 2008
The meeting will take place at 7 PM on Friday, July 18th, at the Panera Bread off of US-68 and OH-41. Its address is:
1950 N Bechtle Ave.
Springfield OH 45504
We anticipate that we will have at least three people attending from the Southwest Ohio area and at least three people from the Central Ohio area. If anyone reading this blog will be in or around Springfield on July 18th, please let us know (by sending an email to asansouthwestohio AT hotmail DOT com) if you would like to join us at the meeting.
Tuesday, July 8, 2008
Sending e-mails or otherwise contacting the campaigns will help to show that there is substantial community interest in this event. The following grassroots alert, distributed by the American Association of People with Disabilities, provides contact information. Please write to the campaigns and urge the candidates to participate in the forum in person.
ASAN and The Autism Acceptance Project are sponsors of this event.
~~~~~~~~~~GRASSROOTS ACTION ALERT~~~~~~~~~~
People with disabilities are 50 million + strong in America, 37 million of whom are voting age. Add to that figure our families, friends, caregivers, and advocates, and we're a force to be reckoned with.
On July 26, 2008, in Columbus, Ohio, the disability community wants to hear from the presidential candidates - Do they have specific policy objectives for Americans with disabilities? How will their existing policy platforms affect us? How will they include us in the new administration, if elected?
You can make sure that happens. Ask the candidates to participate in our forum. Let them feel the power of the disability vote!
WHEN: Start today! The forum isn't until July 26, and we need daily, every-day pressure on the campaigns all the way until the event.
WHAT TO DO:
1. Call, fax, email the campaigns.
Help us to create some friendly pressure on the McCain and Obama campaigns by calling, emailing, and faxing the campaign offices, urging the candidates to participate in person at The National Forum on Disability Issues on July 26, 2008 in Columbus, Ohio.
Sen. Barack Obama
Obama for America
P.O. Box 8102
Chicago, IL 60680
Call: (866) 675-2008
Fax: (312) 819-2089
Email: Alyssa Mastromonaco, email@example.com (Chief Scheduler); Heather Higginbottom, firstname.lastname@example.org (Policy Director); David Plouffe, email@example.com (Campaign Manager)
Sen. John McCain
John McCain 2008
P.O. Box 16118
Arlington, VA 22215
Call: (703) 418-2008
Faxes: (703) 752-2515, (703) 413-0740
Email: Steve Schmidt, firstname.lastname@example.org (day-to-day operations); Carla Eudy, email@example.com (National Scheduler); Doug Holtz-Eakin, firstname.lastname@example.org (Deputy Policy Director); Donna Jones, email@example.com (National Coordinator, Americans with Disabilities for McCain Coalition)
2. Show up with signs at their events.
We know the campaigns are likely to make stop-offs in or near where you live. If they do, go out to the rallies they hold and hold up a sign that says, "SEE YOU IN COLUMBUS, OHIO ON JULY 26!" Decorate the signs however you like, or print and paste a copy of the "Feel the Power of the Disability Vote" logo. We want the candidates and their staff to see these signs EVERYWHERE they go!
Wednesday, July 2, 2008
ASAN Southwest Ohio encourages qualified autistic self-advocates to apply.
The Ohio Developmental Disabilities Council (ODDC) is currently seeking applicants for membership terms beginning in October, 2008. Council membership must comply with categories listed in the federal DD Act. Openings this year will be for the following categories: a) two (2) individuals with a developmental disability, and/or b) two (2) parents or guardians of children with a developmental disability. It is possible that one (1) representative will also be selected from a non-governmental agency or private nonprofit group concerned with services for individuals with developmental disabilities.
All candidates for DD Council membership should have experience serving on committees, boards, or organizations. Such experience concerned with persons with developmental disabilities would be especially relevant. Applicants should have first-hand knowledge about developmental disabilities in Ohio.
It is very important that applicants have time to attend six meetings per year and serve on at least two committees. Each meeting of Council occurs over a two-day period.
Serving as a member of Council provides the opportunity to get involved and work in a collaborative manner with state and federal policymakers, state and local providers, and individuals with developmental disabilities and their family members. Council advocates to improve the system of supports and services for individuals with developmental disabilities and their families, and it conducts grant activities for the same purpose.
Governor Ted Strickland will appoint members for three-year terms beginning October 1, 2008 and ending September 30, 2011. Application packets are available from the ODDC office and must be completed and returned to the office by August 1, 2008. Applications may be requested:
By mail: ODDC, 8 East Long Street, Suite 1200, Columbus, Ohio 43215
By phone: (614) 466-5205 or toll-free (800) 766-7426. If you are leaving a message, please spell out your name, and give your address including zip code, and phone number.
By email by contacting Tammy.Waller@dmr.state.oh.us
Saturday, June 28, 2008
According to the program's website, Cincinnati TOP Soccer is "part of a national soccer program created to train young people with disabilities in a caring coaching environment. The Greater Cincinnati chapter allows a child to participate in the same community sports program as their non-disabled brothers and sisters - to wear the same club uniform, play at the same fields, go to the same awards banquets, and if appropriate, play on a non-disabled team."
ASAN Southwest Ohio supports inclusion of autistic individuals and others with disabilities as fully participating members of community programs. We appreciate Mr. Myres' taking the time to let us know about Cincinnati TOP Soccer, and we hope that its teams will have an enjoyable fall season.
Friday, June 20, 2008
Today, I will attend the first meeting of New Jersey Adults with Autism Task Force, the nation's first state-level planning committee specifically on the needs of Autistic adults. As some of you may recall, the Autistic Self-Advocacy Network lobbied for the creation of this task force with an autistic representative. On April 2nd, I was named by Governor Jon Corzine of New Jersey to serve as one of the body's public members. We are pleased that our community's voice was heard on this issue and I look forward to serving on the Task Force in future months. Although it will only make policy recommendations for one state, this body will develop ideas that, if effective, may provide guidance for public policy on the needs of autistic adults across the globe.
As such, I am personally inviting autistic adults, family members, professionals and others who are interested in sharing their thoughts about the Task Force's mission to e-mail ASAN at firstname.lastname@example.org with stories, recommendations and other comments that you feel will help broaden the perspectives of the Task Force's members, including myself. Please put the keyword, "AUTISTIC ADULTS" in your subject line and feel free to send your stories and/or thoughts at any point over the coming months. In your e-mail, please indicate where you are writing from, some background details about you to the extent you feel comfortable sharing them and whether or not you would be okay with your story being shared publicly. No e-mails will be posted anywhere without the prior written permission of the author. Over the next year, the Task Force will draft policy that I hope will serve as a model for meeting the needs of autistic adults now and into the future. Thank you and please feel free to distribute this message to your networks.
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
Thursday, June 19, 2008
Employer & Disability Alliance Forms to Clarify & Secure Promise of the ADA
Washington, DC, June 18, 2008 – This afternoon, former Congressman Tony Coelho, U.S. Chamber of Commerce President Tom Donohue, LCCR Executive Vice President Nancy Zirkin and autism advocate Ari Ne'eman announced the formation of the Employer & Disability Alliance – a new collaborative effort among some of America's largest business associations and leading disability and civil rights advocates to promote the ADA Amendments Act.
"Narrow court interpretations have removed ADA protections for people Congress intended to cover – those with serious heart conditions, epilepsy, diabetes, and even cancer," said Zirkin. "Organizations in the Employer & Disability Alliance have been working around the clock with leaders in Congress to return ADA coverage – through the ADA Amendments Act – to these people and to craft an agreement that is fair to both employers and those with disabilities," said Zirkin.
"I always say that I don't know of any other group in America who wants to pay taxes – it's those of us with disabilities, because a job is our dignity and an opportunity to participate in this great American dream," said Coelho, the primary author of the original ADA. "What the ADA Amendments Act does is provide us the opportunity to work with the business community to get those jobs we want."
"I'm thrilled to be able to speak up in support of this essential restoration of civil rights law that will ensure that Americans with disabilities, like myself, will continue to enjoy protections and are included throughout society," said Ne'eman who is the founding president of the Autistic Self Advocacy Network.
The ADA Amendments Act clarifies the current requirement that impairment substantially limit a major life activity in order to be considered a disability. It also confirms for the courts that people with disabilities should not lose their civil rights protections because their condition is treatable with medication or can be addressed with the help of assistive technology. The Employer & Disability Alliance sent a letter to the Hill explaining these and other elements in more detail this morning. The full text of the letter is below.
"Some will criticize the details of the compromise, and this criticism will come from some in the employer community and some in the disability community," said Donohue. "But, in making decisions comes some heat and we are willing to take that heat to do what is necessary. Fortunately, the new proposal has been widely vetted in the business community and we look forward to working with the policymakers on Capitol Hill to move the ball forward, with the hope that this agreement can be kept largely intact."
Tuesday, June 10, 2008
An article discussing the show, with many comments from viewers, can be found here:
In response to the show, Estée Klar-Wolfond wrote an insightful article on her blog addressing the misconceptions and outdated views of disability that often are expressed in the media:
Sunday, June 1, 2008
As described on the conference's website, Autreat is an opportunity for autistic people and those with related developmental differences, our friends, and supporters to come together, discover and explore autistic connections, and develop advocacy skills, all in an autistic-friendly environment. Family members and professionals are welcome to attend, but the structure and content of this event will be determined by the interests and sensibilities of autistic people.
Those who plan to donate to the Autreat scholarship fund or to apply for an Autreat scholarship are requested to do so as soon as possible.
Wednesday, May 28, 2008
Here is the statement provided to the court by ASAN regarding Nate Tseglin:
The Autistic Self Advocacy Network (ASAN) is an international organization of adults and youth on the autism spectrum, including Asperger's Syndrome, working to promote the interests of the autistic self-advocate community through public policy and social change advocacy. We are writing as friends of the court to express our concern about the treatment of Nate Tseglin, a young adult with a diagnosis of Asperger's Syndrome who has been taken away from his family and placed in an institution under heavy psychotropic medication.
The right of individuals with disabilities to live in the community has been well established by the United States Supreme Court under the landmark Olmstead v. L.C. decision. The ruling requires states to shift funding from institutional placements to community living supports. Given the clear evidence that institutional settings and the indiscriminate use of psychotropic medication negatively impact the quality of life of autistic adults and youth, we are concerned by Nate's continued placement under restraint in a residential facility where he is isolated from his family, his community, and any meaningful educational or social opportunities. The overwhelming consensus of the scientific community indicates that such a placement is inappropriate, unnecessary, and counterproductive.
Scientific studies have not found that autistic persons are more likely to commit violent acts or violent crimes than non-autistic persons despite some media sensationalism of isolated cases of violence (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Autistic persons are, however, more likely to experience depression, anxiety, and low self-esteem, for which cognitive-behavior therapy (CBT) and one-on-one talk counseling are the recommended interventions (Stewart, Barnard, Pearson, Hasan, & O'Brien, 2006; Sofronoff, Attwood, & Hinton, 2005). Autistic persons also require positive support systems, frequent encouragement and praise, and living and learning environments that are compatible with their cognitive strengths, challenges, and preferences in order to achieve success in their life pursuits and gain a high quality of life (Renty & Roeyers, 2006; Plimley, 2007). Psychotropic medications should always be used with extreme caution with autistic persons as typically these medications are not specifically tested on this population in clinical studies, and psychotropic medications may cause substantial harm if used in an indiscriminate fashion.
Nate's current placement does not meet his needs and is likely to result in long-term physical and emotional damage. We urge the Court to recommend that Nate be removed from the Fairview Developmental Center and returned to the community.
The Autistic Self Advocacy Network,President
1101 15th Street, NW Suite 1212
Washington, DC 20005
Scott Michael Robertson
The Autistic Self Advocacy Network,Vice President
Barry-Walsh, J. B., & Mullen, P. E. (2004). Forensic Aspects of Asperger's Syndrome. The Journal of Forensic Psychiatry & Psychology, 15(1), 96-107.
Murrie, D. C., Warren, J. I., Kristiansson, M., & Dietz, P. E. (2002). Asperger's Syndrome in Forensic Settings. International Journal of Forensic Mental Health, 1(1), 59-70.
Plimley, L. A. (2007). A Review of Quality of Life Issues and People with Autism Spectrum Disorders. British Journal of Learning Disabilities, 35(4), 205-213.
Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10(5), 511-524.
Sofronoff, K., Attwood, T., & Hinton, S. (2005) A randomised controlled trial of a CBT intervention for anxiety in children with Asperger syndrome, Journal of Child Psychology and Psychiatry 46 (11) , 1152–1160
Stewart, M. E., Barnard, L., Pearson, J., Hasan R., & O'Brien, G. (2006) Presentation of depression in autism and Asperger syndrome: A review, Autism, 10 (1), 103-116
Tuesday, May 27, 2008
We responded by discussing the federal requirement that as to special needs children, responses to behavioral issues must be determined on an individual basis, according to each student's needs as identified in the IEP. Of course, this does not mean that teachers should deal with behavioral problems on an ad hoc basis, just making things up as they go along. Children need consistency from their teachers in addressing behavioral issues, and such consistency can be especially important for autistic children. It is therefore advisable for each special needs student to have an individual plan that identifies problematic behaviors (if any) and the appropriate responses by teachers and staff to those behaviors. When a behavioral incident is reported, the plan should be reviewed, in consultation with the parents, to determine what classroom changes and accommodations could be helpful to the child's development. Teachers who work with special needs children should receive regular continuing education to improve their understanding of behavioral differences.
We also agreed that the placement she described was not helpful for her autistic students. ASAN advocates for inclusive settings for children with developmental differences, rather than segregated placements. Inclusive education recognizes that all children have the potential to contribute to society, that their differences should be respected, and that they should receive reasonable accommodations when necessary. All children benefit from a greater understanding of the diverse ways in which humans learn and adapt to our surroundings.
ASAN Southwest Ohio welcomes inquiries from educators and others who seek to learn more about the characteristics and needs of the autistic population.
Saturday, May 24, 2008
As some of you may already be aware from news articles and blog posts on the topic, last week a Morningside Elementary Kindergarten teacher had students "vote out" of the class a 5-year old autistic student named Alex Barton. According to the news article, the teacher had each of Alex's classmates, including his sole friend in the class, state publicly what they disliked about him and then announced that they would take a vote to remove him from the class. Alex has not been back to school since and has suffered significant emotional trauma as a result of this incident. Regardless of who you are or what your connection to the autistic and autism communities might be, I think we can all agree that this is unacceptable.
We need to band together to prevent future such abuses from occurring, to ensure that this teacher is properly disciplined and to encourage this school to adopt both a strong bullying prevention policy and training on respect for all forms of diversity aimed at both teachers and students. As such, we've provided contact information below for you to write to communicate your outrage. Please be polite yet firm in your comments, pointing out the unacceptability of such actions when aimed at any student, as well as the need for this school to adopt policies to prevent this from happening in the future. This is an opportunity to drive home the message that we will not stand by while one of our own is abused. We ask that you please cc: email@example.com in your e-mails to the school district so we can keep track of the strength and sources of this response. Remember: abusive messages hurt our cause - please be respectful in your comments.
Morningside Elementary School Principal:
Mrs. Marcia Cully
St. Lucie County Schools Superintendent:
Michael J. Lannon
4204 Okeechobee Road
Ft. Pierce FL 34947-5414
St. Lucie County School Board Chair:
Vice Chair:Judith Miller
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
Tuesday, May 13, 2008
A similar forum that was held in New Hampshire in November made history as the first presidential candidates' forum on disability issues. Seven candidates participated in that forum, five of them in person.
ASAN expresses its gratitude to Estée Klar-Wolfond of The Autism Acceptance Project for her generous assistance.
Saturday, May 3, 2008
TASH seeks to develop inclusive communities that allow for full participation of persons with disabilities. Its mission is to eliminate physical and social obstacles to equity, diversity, and quality of life. On many occasions, TASH has provided testimony and legislative advocacy regarding disability rights issues. It strongly advocates banning the use of aversive behavior control methods that inflict pain on children and adults with disabilities.
The Ohio chapter of TASH has indicated a particular interest in working with ASAN Southwest Ohio on matters of legislative advocacy.
Tuesday, April 22, 2008
We agreed that letter-writing campaigns would be helpful to raise the visibility of the autistic community's concerns among legislators, magazine publishers, and others who may not be aware of the civil rights issues. Redbook magazine was mentioned as an example of a publication that has printed damaging stereotyped articles. Issues to be raised in letters to Ohio legislators include providing appropriate educational services to help children learn and communicate in the ways that they are best able, improving the enforcement of laws against disability discrimination, determining the actual needs of those who receive adult services based on input from the self-advocate community, and ensuring that autism awareness efforts are realistic and not stigmatizing.
We also discussed making contact with local autism societies and support groups, which could be useful to help us become more well known in the community.
Tuesday, April 15, 2008
So far, we have four people who have confirmed that they are planning to attend the meeting. If anyone reading this blog will be in or around Dayton on April 21st, please let us know (by sending an email to asansouthwestohio AT hotmail DOT com) if you would like to join us.
We'll be getting acquainted and discussing policy initiatives in Ohio. We look forward to seeing everyone there!
Friday, April 11, 2008
The report, which provides recommendations for improving state services for Ohio residents with developmental disabilities, featured the following excerpt from ASAN's comment as the introduction to a section entitled Specialized Needs, which discusses autism spectrum conditions and the need for coordinated community efforts to meet needs that may be inadequately served under the current infrastructure:
"Autistic individuals are a historically underserved population whose needs may not be fully met by the traditional developmental disability infrastructure. Moreover, K-12 personnel, university administrators and staff, and disability services personnel should possess a working knowledge of autism spectrum disorders and should receive autism-related training whenever necessary."
The report acknowledged that there is a critical need for specialized programs and services, recommended regional partnerships with service providers to assist individuals with specialized needs, and specifically mentioned the need to develop programs and services for people diagnosed with Asperger Syndrome who might not currently be part of the agency's programs.
Wednesday, April 2, 2008
Thank you for this opportunity to address the first meeting of the Florida Autism Task Force on today, the first World Autism Day. My name is Ari Ne'eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.
The autism spectrum is broad, diverse and subject to many stereotypes. Just as we work to combat generalizations about racial, religious, national or other minorities, it is only right to avoid a stereotyped view of autism. There are speaking and nonspeaking people on the autism spectrum; people currently capable of living independently and holding competitive employment and those with more significant support needs before those goals are conceivable to them. There are those of us who have held diagnoses since childhood and those of us who were identified later in life, serving to correct an inaccurate previous diagnosis that had placed us in the wrong educational or service-delivery infrastructure. To claim, as some continue to do, that we on the autism spectrum are all incapable of speaking for ourselves is an ignorant and damaging falsehood. Equally harmful is the idea that autistic people are all geniuses or savants, with Rain Man-esque abilities. As someone with an autism spectrum diagnosis myself, I hope to address some of these misconceptions, explain a bit more about our community and inform those assembled here today about the public policy priorities – and concerns – of the autistic self-advocacy movement. In doing so, I hope to communicate to you that, contrary to the unfortunate paradigm that has pervaded the media discourse about us, autism is not a tragedy. We are, as with any other minority, a community with unique needs, strengths, challenges and aspirations that are often distinct from the parent or professional voices that speak about us, without us. The true tragedy is the persistent discrimination, abuse and lack of access that continues to govern society's approach to us. On this, the first ever World Autism Day, we assert that it is this prejudice – not autism itself – that we have a true interest in combating, in the interest of ensuring for every person the rights of communication, inclusion, self-determination and respect.
I was diagnosed on the autism spectrum, specifically Asperger's Syndrome, at age 12. Growing up, I spent time in both inclusive and segregated educational placements. My own negative experiences with segregated educational environments led me to become an advocate for my own educational inclusion and later for the inclusion of other students with disabilities. These experiences motivated me to found the Autistic Self Advocacy Network, an international grassroots advocacy organization of adults and youth on the autism spectrum. ASAN's work has involved me in a number of areas of public policymaking that are important to people on the autism spectrum, some of which I will outline here.
In determining how best to develop a system that provides for the educational, service-delivery and other needs for individuals on the autism spectrum, it is imperative that self-advocates be recognized as the central stakeholder in this discussion. I'm happy to see Florida creating an Autism Task Force to identify what needs to be done in the areas of education, services, supports and research, however I am saddened that the task force did not provide for representation from people on the autism spectrum ourselves. During my time in Florida, I will be working to create a chapter of the Autistic Self Advocacy Network. I encourage the members of the Task Force to communicate with us in their deliberations. Future policymaking bodies relating to the autism spectrum and disability issues more generally must include self-advocates. We know our own needs best and no policymaking process can be legitimate without including those who it purports to serve. Nothing About Us, Without Us!
One of the key areas of unmet need for the autistic community – the community of those of us actually on the autism spectrum, as opposed to the parents and professionals who make up the frequently discussed autism community – is in the area of diagnosis. As many of you familiar with the autism field are aware, we have been seeing a steady increase in the reported incidence of the autism spectrum, with the most recent update pointing to an incidence of 1 in 150 from a previous 1 in 166. The reason for this increase in reported incidence is not an "autism epidemic" or any other causation theory that seeks to promote the false idea of autism as a contagion or a force that "steals" an otherwise normal child. This disease-oriented model is not supported by either science or our own experiences. What we are seeing is an increase in awareness of the autism spectrum, resulting in more accurate diagnosis identifying individuals who previously were placed within the mental retardation, mental illness, learning disability or other educational and service-delivery infrastructure. This is a situation that I myself experienced, having been diagnosed on the autism spectrum after having an inaccurate ADD diagnosis for years prior. It is also something that is experienced by many other adults and youth on the autism spectrum in a far more damaging fashion, as a result of the frequent institutionalization and presumption of cognitive inability that far too many autistics continue to suffer from today.
The rapid increase in autism spectrum diagnoses has accompanied repeated broadening of the diagnostic criteria for the autism spectrum, incorporating more information about the diverse manifestations of our neurological type. In addition, the past few decades have resulted in a decrease in the stigmatization of parents of autistic children, as a result of the medical community moving away from the odious and damaging inaccuracy that autism is the result of "refrigerator mothers". This, combined with increased services and supports available for the autism spectrum, has resulted in more autism spectrum diagnoses. These increasing numbers, however, fail to take into account the substantial number of individuals on the autism spectrum who, as a result of a lack of health care access and/or professionals trained in the diagnosis of adults as well as problems with inaccurate diagnostic criteria, are unable to find the resources to acquire the diagnosis that would accurately describe their characteristics and enable them to qualify for services. It is necessary that we increase the availability of accurate information relating to the autism spectrum in reference to adults and youth.
There remains a shocking lack of awareness for the needs – and even the very existence – of autistic adults. In many circles, it is assumed that autism is something relevant only to children and as a result legislation and policymaking has been focused mostly on early childhood. However, there is a large population of adults and adolescents on the spectrum with needs that are not being met. In areas like employment accommodations and other aspects of disability service-delivery, adults on the spectrum are frequently unable to access the supports that are currently available, due to a lack of knowledge of our particular needs. Many of us, as is the case for others with less obvious, "invisible" disabilities, face pervasive employment discrimination as a result of communication difficulties. Vocational Rehabilitation agencies in many states are unaware of how to address these issues, due to the fact that while many of us have the skills for competitive employment, difficulties with transportation, the interview process and the social aspects of the workplace can often interfere with holding a job. It is important not only to educate the general public about autism, but also disability service-delivery professionals who are too often unfamiliar with our population.
Many adults on the autism spectrum continue to suffer in institutions, despite the Supreme Court decision of Olmstead v. L.C., promising community living options for adults with disabilities. In my work on New Jersey's Olmstead Implementation and Planning Advisory Council and with ASAN chapters across the country, I have seen a consistent lack of knowledge of the unique needs of adults on the spectrum when planning community living options. Many of us have difficulties with certain kinds of sensory environments – a lack of awareness of these issues on the part of those planning and implementing the transition into the community can result in problems with the de-institutionalization process. These and other aspects of community living show the need for significant representation of self-advocates in the policymaking process, to ensure both the legitimacy of the process and the creation of the most effective possible public policy strategies.
Autism training for law enforcement (as well as other emergency personnel) remains a key issue. Many of us possess significant difficulties with communication, particularly in high-stress and anxiety-provoking situations. What happens when a person who cannot speak out loud when under stress is approached by a police officer and asked for personal information? What about when a person fails to understand instructions given to stop or engages in an activity that is interpreted as aggressive? There have been numerous incidents of serious injury and even death as a result of a lack of knowledge on the part of law enforcement personnel about autism and other disabilities. This must be rectified and has been the source of legislation in a variety of states across the country. High-quality training for law enforcement and other emergency personnel does exist and it should be utilized in every locale.
For many adolescents on the spectrum and our families preparing to transition out of the school is a process with little guidance or support. When I was preparing to leave high school, my school did not provide sufficient information on the college applications process because it was assumed that as a special education student, my options were limited. While it is certainly the case that not every student on the spectrum – or every student generally – will be able to attend university, more of us are having that opportunity. It is necessary to see more of a focus on college transition for students on the autism spectrum in both high schools and universities. One of the areas that is frequently ignored in this process is that of "soft skills" related to day to day living. Many of ASAN's parent members frequently are told that issues relating to life skills are not the obligation of school districts, despite the fact that this type of education is just as necessary for students to succeed as the more traditional forms of academics. The communication and executive functioning difficulties that those of us on the spectrum face compound the traditional difficulties that new college students face. In fact, these issues – as well as the matter of transition more generally – are relevant for all students on the spectrum, whether or not college is a possibility. For a successful transition to a post-secondary environment of any kind, basic life skills need to be understood. It is essential that steps be taken to incorporate these elements into the school curriculum in an inclusive fashion.
In a broader sense, educational needs for students on the spectrum must be given additional focus. There has already been a productive discussion on the issue of early childhood educational methodologies. It is important to keep in mind that any educational intervention should be aimed at the acquisition of skills, not trying to enforce an arbitrary standard of normalcy. Efforts should not be aimed at the undesirable and impossible goal of trying to make autistic individuals non-autistic. Instead, education should be aimed at addressing the significant disabilities many of us face with the goal of improving quality of life. We also have to ensure that are educational methods avoid utilizing abusive and dangerous techniques in the name of treatment. The use of aversive interventions, the application of pain as a means of behavior modification, should be considered unacceptable in any society that aspires to be termed civilized. As a result of aversives and abusive restraint practices, many students and adults in institutions are injured or even killed each year. This must stop. We need a full ban on the use of aversives and non-emergency restraint as well as an end to out-of-state placements that put students in facilities that utilize these barbaric methods.
We also have to face up to the persistent problem of bullying and its negative effect on the mental health of all students. Students on the autism spectrum are particularly vulnerable to bullies due to the social literacy issues we tend to have. When I was in school, bullying was one of the reasons I spent a period of time away from my home school. This is a common situation for students on the spectrum and represents a grave obstacle to our legal right of a "free and appropriate public education in the least restrictive environment". I know that the success that I have achieved today would not have been possible had I not returned to an inclusive school setting where I learnt more about how to successfully adapt to the world around me. Yet, as a result of bullying, many students face serious emotional or physical injury if they remain in their home schools. This also must be stopped. Florida remains one of a handful of states without true anti-bullying legislation. I urge the legislators and activists here today to address this problem.
Finally, I turn to the more controversial area of research. Here, the autistic self-advocate community holds strong views that may clash with those of some of the interest groups assembled today. The persistent focus on both causation and cure in the autism research agenda has left promising areas of research ignored would could positively impact the quality of life for those of us on the spectrum. Despite extremely encouraging possibilities in the realm of Assistive and Augmentative Communication (AAC) technology for many individuals on the autism spectrum, research in this area is given little to no funding. The development of best practices in service-delivery and education is too often ignored. Mental health needs, restraint reduction, health care access, transition, adult supports and a variety of other educational and service/support needs could all benefit from more research into best practices and effective methodologies. Yet quality of life-oriented research in general is underfunded. If we spent one-tenth of the money and attention we currently lavish on the idea of an autism cure on communication technologies, countless nonspeaking autistic people would be able to communicate today. The fact that we have not pursued promising avenues of research into communication possibilities should be a source of great concern to us as a society.
There are also concerns that we have about the type of research that is being funded. The autism spectrum represents a natural and legitimate part of human genetic diversity. As a result, efforts to identify genes associated with autism with the goal of developing a prenatal test, enabling the possibility of selective abortion, should be met with opposition from all those concerned about the issue of disability rights. Given the fact that 90% of fetuses that test positive for Down Syndrome are aborted and there exists a similar social stigma against the autism spectrum, I urge both private foundations and government research institutions to re-orient their funding away from research with eugenic applications. While we have no position about the broad issue of abortion, the issue of eugenics is of great concern to us.
Thank you for your time. If we as a society seek to fulfill the values we espouse, we must take practical steps to establish ourselves as a culture that respects neurological diversity in the same way that history has shown us to respect racial, religious, national and other forms of diversity. We on the autism spectrum can make significant contributions to the world around us and, with the right supports, services and education, we can and should be active and participating members of society. By pursuing the goals of inclusion, respect and access, we can make that a reality. I'd like to end with a quote from Jim Sinclair, the founder of Autism Network International (ANI), the first autistic self-advocate organization and a group from which much of the growing autistic culture developed from. ""The tragedy is not that we're here, but that your world has no place for us to be." Today, on the first World Autism Day, I encourage all of us to think about what we can do to change that unfortunate reality and pursue a policy of autism acceptance, now and into the future.