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Witnesses for Congressional hearing on autism announced

28 Nov

Thursday the US House Committee on Oversight & Government Reform will hold a hearing on autism: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism.

The witness list has been made public on the committee’s website:

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Co-Founder
Autism Speaks

Mr. Scott Badesch
President
Autism Society

Mr. Mark Blaxill
Board Members
SafeMinds

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne’eman
President
Autistic Self Advocacy Network

Thank Mitsubishi for supporting an Autism Campus Inclusion Leadership Program

19 Jun

In February I posted an email from the Autistic Self Advocacy Network describing their program for this summer:

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

That program was supported by the Mitsubishi Electric America Foundation (MEAF). If you feel grateful for their support of this program, you can contact some of the executives of the Foundation.

Katsuya Takamiya, President and CEO:
http://tinyurl.com/786gdcg

Kevin R. Webb, Director, MEAF:

Mitsubishi Electric Public Relations:

I can’t take credit for finding those links. That credit goes to the “Canary Party”. Never heard of them? Well, they are an offshoot of groups like SafeMinds and others. The sort who are behind the blog, Age of Autism.

No, they didn’t collect those links in order to thank the Foundation for their efforts. They wanted their membership to complain. They have a webpage (Mitsubishi Funds Group that Opposes Preventing or Curing Autism). Their discussion is rather long, but the main points are copied below. (The original has formatting problems which they don’t seem to want to fix.)

Despite the many worthwhile autism charities desperately in need of funding, Mitsubishi Electric America Foundation (MEAF) has chosen to fund one that:
1) opposes all efforts to cure or prevent autism, denies an increase in autism prevalence and now seeks to promote this form of “activism” among college students nationwide.
2) blatantly violates MEAF’s own stated guideline: “We do not fund organizations or programs connected with a controversial social or political issue.” MEAF is funding a “neurodiversity” initiative by ASAN (Autism Self Advocacy Network) – highy controversial in the autism community. According to ASAN, “The training is meant to prepare students to engage in self-advocacy and pro-neurodiversity activism on their college campuses.”
3) promotes “self-diagnosis” of autism, causing students who may have the disorder to not qualify for college disability support services and national testing service accommodations, thus diminishing, not “enhancing” chances for academic success and future employment. “Self-diagnosis” (without medical confirmation) of any disability, disease or disorder is an irresponsible practice and should not receive corporate funding.
4) does not promote “full inclusion of people with disabilities alongside their peers without disabilities,” as called for in Mitsubishi guidelines, but promotes segregation of people with disabilities in extracurricular activities.

Yes, the “canary party”, a group devoted to promoting the failed “mercury in vaccines caused an autism epidemic” idea is claiming that ASAN is “highly controversial”. A group spreading fear of vaccines is pointing fingers claiming someone else is “irresponsible”.

Take the time. Click on the links. Let the good people at Mitsubishi know that people appreciate their support.

Join ASAN Seattle in Protesting the Judge Rotenberg Center at the ABAI Convention!

24 May

The Autistic Self Advocacy Network (ASAN) is organizing a protest against the Judge Rotenberg Center.

On Sunday, May 27th, the Association for Behavior Analysis International (ABAI) is holding their annual convention in the city of Seattle, Washington. As they have many times in the past, ABAI is allowing the Judge Rotenberg Center (JRC) to exhibit at their convention this year.
The Judge Rotenberg Center’s use of contingent electric shock, food deprivation, mechanical restraint and other “aversives” have been called out as abusive on multiple occations. In 2010, their practices were  declared torture by the United Nations, which then asked the US government to intervene.  Recent civil litigation has led to renewed media attention from sources ranging from the Boston Globe to Anderson Cooper’s television shows. The United States Department of Justice has targeted the Judge Rotenberg Center in an ongoing investigation of their abusive practices. For decades, disability rights advocates have worked towards one simple goal: shut the Judge Rotenberg Center down.

Still, ABAI hasn’t gotten the message: the Judge Rotenberg Center’s use of torture in the name of treatment should never be given a platform. ABAI needs to disavow the Judge Rotenberg Center and other facilities which use abusive treatments.

The Autistic Self Advocacy Network’s Seattle chapter is mobilizing to tell ABAI that when it comes to the torture of disabled children and adults, the time has come for them to pick a side, condemn the Judge Rotenberg Center and stop giving them a platform.

When: Sunday, May 27th, 2012 at 12 NOON PDT

Where: Washington Convention & Trade Center Downtown

800 Convention Place, Seattle, WA 98101-2350

RSVP on Facebook

With pending legislation in New York and Massachusetts, we are closer now than ever before to ending the Judge Rotenberg Center’s torture of our people. Please show up to the protest and invite others to attend with you.

Places like the Judge Rotenberg Center count on the world not caring about people with disabilities to survive. They count on on society’s unwillingness to open its eyes and see Americans with disabilities as equal citizens deserving of equal rights. This Sunday, let’s prove how wrong they are. Let’s make sure our voices are heard.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://autisticadvocacy.org/

ASAN’s Ethical, Legal and Social Implications of Autism Research Symposium Goes Live

10 Apr

The Autistic Self Advocacy Network (ASAN) hosted a symposium on the Ethical, Legal and Social Implications of Autism Research recently. They are now making it available online. See the message below:

Dear Friends:

This week, the media reported that over $1 billion has been spent over the course of the last decade on autism research funding. During a time of constant budget cuts and increasing fiscal pressures on government, this is an astonishing sum. What have we purchased for this investment? How successful has the autism research agenda been in making the American dream a reality for Autistic people and our families? Has our society discussed the ethical, legal and social consequences of how autism research findings may be used? We think these questions are worth asking, and with your help, we think it is past time to get more people involved in the discussion.

Last December, the Autistic Self Advocacy Network joined with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics to hold a symposium on the Ethical, Legal and Social Implications (ELSI) of Autism Research. Supported by a grant from the Administration on Developmental Disabilities, the ASAN ELSI Symposium served as the launching point for a robust conversation about changing the way our society approaches autism research. From our partnership with federal research funders to get self-advocates on grant review panels to growing attention to ethical issues on topics like prenatal testing, self-determination in service-provision and more, the need to introduce values into our national autism research dialogue remains stronger than ever.

Over the course of the month of April, we will be releasing captioned videos of December’s ELSI Symposium. The first is already available on our YouTube channel. You can help us get the word out by watching it alone or with your friends and colleagues, sharing it on facebook and twitter, and starting to talk about these things in your own community. The time has come for our voices to be heard.

Nothing About Us, Without Us!
Ari Ne’eman
President
Autistic Self Advocacy Network

Call for Applicants: Leadership Training for Autistic College Students

28 Feb

This announcement from the Autistic Self Advocacy Network (ASAN).

What is the Autism Campus Inclusion (ACI) Summer Institute? The ACI Summer Institute is a week-long training for Autistic college students. The training is meant to prepare students to engage in self-advocacy and pro-neurodiversity activism on their college campuses.

Who is eligible for the ACI Summer Institute? Any current Autistic college student in the United States is eligible to attend. Students should have at least one more year remaining in college. Because of the support we are receiving from our partners, we are offering this institute at no cost to the students chosen for the program, including travel accommodations, room and board. The institute will take place August 12th through August 17th in Baltimore, MD.

What will participants learn at the ACI Summer Institute? With curriculum based on our collaboration with the Daniel Jordan Fiddle Foundation in the Empowering Disabled Leaders handbook and materials produced and developed with the help of University of New Hampshire’s Institute on Disability, the participants will learn how to engage in activism and advocacy activities on their college campuses.

Applications are due by March 30, 2012 with accepted applicants being contacted in May 2012. If you feel you would like to participate, please fill out the application and submit it with your responses to the essay questions and your resume to Melody Latimer at mlatimer@autisticadvocacy.org . All questions should also be directed to Melody.

We look forward to hearing from you.

Sincerely,

Melody Latimer
Director of Community Engagement
The Autistic Self Advocacy Network

APPLY NOW!

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

20 Feb

I received the notice below recently from the Autistic Self Advocacy Network (ASAN).

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

Please disregard the prior email sent out. Due to a small technical issue, the link to apply does not work. This issue has been resolved and we apologize to any inconvenience. Thank you.

– The Autistic Self Advocacy Network Communication Committee

The Autistic Self Advocacy Network with the help of the Mitsubishi Electric American Foundation is launching a new program for Autistic college students. In August 2012, ASAN will be inviting 13-18 Autistic students to participate in the Autism Campus Inclusion leadership training.

Drawing from the powerful Navigating College handbook and the Empowering Autistic Leaders booklet scheduled for release in early 2012, participants will learn valuable skills to effect systems change in their individual campuses and increase their own skills in self-advocacy and self-help.

This is an exciting move forward for ASAN and we hope it can be an exciting move forward for you. If you are a current college undergraduate student who identifies on the Autism Spectrum, including Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified, with a strong interest in the Disability Rights and Autistic Rights movements, we invite you to apply for this leadership training. Applicants must be currently enrolled in a higher education institute or college in the United States (including the District of Columbia), with at least one year left after completion of the leadership training.

If you have any more questions or comments, please direct them to Melody Latimer at mlatimer@autisticadvocacy.org

We look forward to hearing from you.

Thank you for your advocacy,

The Autistic Self Advocacy Network

APPLY NOW

With special thanks to…

Joint ASAN-Autism Society Statement on DSM 5

31 Jan

Below is a joint statement by the Autistic Self Advocacy Network and the Autism Society of America on the DSM-5.

Dear Friend,

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5:

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5’s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5’s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5’s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Sincerely,
Ari Ne’eman
President of
Autistic Self Advocacy Network
aneeman@autisticadvocacy.org

Scott Badesch
President of
Autism Society
sbadesch@autism-society.org

Autistic Advocacy Group Condemns Presidential Appointment of Anti-Vaccine Activist Peter Bell

12 Jan

Peter Bell of Autism Speaks has been appointed to the President’s Committee for People with Intellectual Disabilities. As I read about the appointment I felt that there would be some reaction. Perhaps even a strong reaction. And, as you will see, I was correct. The Autistic Self Advocacy Network (ASAN) has issued a press release condemning the appointment.

Here is the press release:

FOR IMMEDIATE RELEASE

PRESS CONTACT:
Melody Latimer
Autistic Self Advocacy Network
Phone: 202-630-7477
mlatimer@autisticadvocacy.org

AUTISTIC ADVOCACY GROUP CONDEMNS PRESIDENTIAL APPOINTMENT OF ANTI-VACCINE ACTIVIST PETER BELL

Recent appointee Peter Bell has a long history of supporting fringe, anti-vaccine positions widely discredited in the scientific community

Washington, DC – January 12, 2012 – The Autistic Self Advocacy Network, the nation’s leading advocacy group run by and for Autistic adults, today expressed concern and disappointment over President Obama’s announcement Tuesday of his intent to appoint anti-vaccine activist Peter H. Bell as a member of the President’s Committee for People with Intellectual Disabilities.

“Bell’s appointment shows such contrast to the forward motion the Obama administration has shown in the areas of autism and disability as a whole,” said Melody Latimer, ASAN Director of Community Engagement and an autistic parent of autistic children herself.

Bell, Executive Vice President of Programs at Autism Speaks, has a long history of supporting anti-vaccination related causes, dating back to his time as President and CEO of Cure Autism Now, which merged with Autism Speaks in 2007. Despite wide ranging scientific evidence to the contrary, Bell and others in the anti-vaccine movement have long maintained the existence of a link, a position viewed as irresponsible by many public health advocates.

“The link between Autism and vaccines has long been discredited, and so an appointment placing an anti-vaccine leader in a position to influence a greater audience and re-open the issue is disappointing and ill-advised. We respect and appreciate the Obama Administration’s commitment to autism issues, but hope they will vet their appointees more carefully going forward,” Latimer noted.

Autism Speaks, Bell’s employer, has a checkered and controversial history. In 2009, Autism Speaks lashed out at the Department of Health and Human Services for refusing to incorporate research objectives connecting autism to vaccines in the Inter-Agency Autism Coordinating Committee’s Strategic Plan for Autism Research. In response to Autism Speaks’ disconnect from mainstream science on this question, several senior executives resigned from the organization in protest.

Autism Speaks has also been viewed with substantial controversy by Autistic people themselves, in large part due to the organization’s failure to meaningfully include individuals with the disability on their board of directors or in more than token roles in their senior leadership. Other criticisms of the organization include the low percentage of funds Autism Speaks invests in services, abnormally high executive salaries and what many have interpreted as deeply offensive advertising utilizing fear and pity to raise money. In 2009, the organization debuted its much-ridiculed video “I Am Autism” at the United Nations in New York City, presenting autism as an anthropomorphic force aiming to steal children. After widespread protests from Autistic adults across the country and criticisms from other disability organizations, Autism Speaks eventually pulled the promotional film.

The Autistic Self Advocacy Network (ASAN) is the nation’s leading advocacy organization run entirely by and for Autistic adults and youth. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. The organization’s activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of Autistic cultural activities and other opportunities for Autistic people to engage with others on the spectrum.

Happy Holidays from the Autistic Self Advocacy Network

22 Dec

Below is an email I received from the Autistic Self Advocacy Network. Their end-of-year letter:

As we approach the end of the year, many of you will be getting ready to spend the holiday season with your families. As you do, we hope you’ll take a moment to remember all that we’ve accomplished together this year.

From our Navigating College handbook to our Symposium with Harvard Law School on Ethical, Legal and Social Issues in Autism Research, this has been an exciting year for the Autistic Self Advocacy Network. We celebrated our fifth anniversary, engaged in advocacy on critical issues like stopping the Judge Rotenberg Center’s abuse of children, fighting for more public support on critical topics like transition supports, true community integration, stopping restraint and seclusion and more.

In addition, our programming has helped build a stronger voice for the Autistic community in many sectors of American life. In our Keeping the Promise report, we partnered with other national self-advocacy groups to help define community living resulting in a document now being used by advocates and policymakers nationwide. Through our participation in the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), we are breaking new ground by ensuring the participation of Autistic voices in the research process. What’s more, 2012 promises to bring even more progress.

In 2012, our new internship program with Freddie Mac will result in new job opportunities for Autistic adults. Our forthcoming Autism Campus Inclusion initiative will help train the next generation of Autistic leaders and build a network of Autistic-run organizations on college campuses across the country. Not to mention our continued advocacy and activism to ensure that wherever autism is being discussed, we have a voice at the table – together.

Will you help support our work to keep the self-advocate voice front and center in 2012? Please consider an end of year donation to the Autistic Self Advocacy Network. With your help, the momentum we have begun this year can continue and build real and lasting change for our shared community. All donations are tax-deductible.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network

PS. If you are unable or uncomfortable making donations online, donations can be sent to

The Autistic Self Advocacy Network
PO Box 66122 NW
Washington, DC 20035

ASAN Seeks Autistic People as Federal Grant Reviewers

12 Dec

The Autistic Self Advocacy Network (ASAN) is looking for Autistics to assist in reviewing grant applications for federally funded research. This follows their Symposium on Ethical, Legal, and Social Implications of Autism Research

The announcement is below:

The Autistic Self Advocacy Network’s Symposium on Ethical, Legal, and Social Implications of Autism Research, funded by the Administration on Developmental Disabilities, was a huge success. The symposium video will be made available in the coming weeks with captioning. We’d like to thank our co-sponsors, the Harvard Law Project on Disability, the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics and the UNESCO Bioethics Chair, American Unit for helping to make this event possible.

Our conversation was broad and wide ranging. Perhaps the most interesting characteristic of the Symposium was the people that came to the table. Our participants – split evenly between self-advocates and researchers – identified a wide number of ways to help advance the inclusion of Autistic people ourselves in the research process. From Community Based Participatory Research processes to greater inclusion of Autistic adults on IRBs and Grant Review panels, a number of actionable next steps emerged from our discussion. ASAN will be following up on this through a series of targeted policy briefs and collaboration with our federal partners to make those ideas reality.

One of the key issues to emerge out of our conversation in Cambridge was the inclusion of Autistic people and other people with disabilities as grant reviewers on federally funded grants. In response to our symposium, several key federal funders have offered to work with ASAN to identify Autistic adults and other people with disabilities interested in serving on forthcoming federal grant review panels.

As a result, we’re issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume. Resumes can be sent to info@autisticadvocacy.org with the Subject line GRANT REVIEW.