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Autism Rights Watch Grieves for the Families after Newtown, CT Shootings

16 Dec

Autism Rights Watch has offered a statement of support for the families and communities of Newtown Connecticut:

Autism Rights Watch Grieves for the Families after Newtown, CT Shootings

ARW starts with:

Autism Rights Watch grieves for the families of the Sandy Hook Elementary School and the community of Newtown, CT. We are devastated. Our wishes and condolences go to the many families affected. Our thoughts also go to the first responders who faced this horrific scene.

The full statement can be found at the link above, but let me pull one more paragraph. It is very difficult to address a side issue to such a horrific event, but AWR, like other autism orgs who have offered similar messages, does so with respect, informing the media of the need to include autism accurately:

The search for answers should not be a search for a scapegoat. Autism is no excuse or explanation to evil. Being “autistic”, “odd”, “awkward”, “camera shy”, a “nerd” and “uncomfortable with others” does not cause a person to become a mass murderer. Autistic persons are more likely to be victims, rather than perpetrators of violence. Autism Rights Watch urges the public and the media outlets not to stigmatize the autistic persons and their families. They already are facing segregation and prejudices on a daily basis.

Autism Rights Watch bills itself thus:

Note: Autism Rights Watch is an independent non-partisan, non-sectarian international non-profit organization dedicated to the rights and the inclusion of the persons on the autism spectrum and with other special needs. Our 501c3 status is pending. ARW is an American based NGO with significant activities in France and in Florida. It participates as an NGO to the informal network against school segregation at the Council of Europe.

Media inquiries shall be directed to contact@autismrightswatch.org

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By Matt Carey
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By Matt Carey

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat

15 Dec

Autistic Adult Rachel Cohen-Rottenberg has written about the Newtown shooting at Sandy Hook Elementary in:

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat
December 15th, 2012 by Rachel Cohen-Rottenberg

Yesterday morning in Newtown, Connecticut, a young man murdered 20 children at the Sandy Hook Elementary School, along with six adults, having already killed his own mother. When I saw the news, I broke down and cried. All I could say, over and over, was Why would anyone kill little children? How could anyone do such evil?

Given the speculation that the killer was autistic, it is important that autistic voices be heard, autism community voices be heard.

The full article at When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat

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By Matt Carey

AWN’s Appeal to Media Sources Covering Newtown, CT

15 Dec

The Autism Women’s Network (AWN) ha issued an appeal to media sources covering the Newtown shooting story.

AWN’s Appeal to Media Sources Covering Newtown, CT
There is no evidence linking planned criminal violence to autism.
With the tragic events unfolding regarding the recent school shooting at Sandy Hook Elementary, we here at Autism Women’s Network send our heartfelt condolences to all the families. It is unimaginable what they are going through at this time. The loss of so many innocent lives is unspeakable and heartbreaking.

With a few media sources reporting that the shooter is on the autism spectrum, we want to make an appeal that reporters and news outlets tread carefully in this regard. First, nothing has been confirmed about any possible diagnosis the shooter may have had.

Secondly, there is zero evidence linking planned crimes to autism. It cannot be stressed enough that autistic people, as well as all people with disabilities, are more likely to become victims of violence and crime rather than the perpetrators of such: Crime Victims with Developmental Disabilities.

Please remember that attempts to link a population of people to a particular crime is stigmatizing and damaging. The lasting affects cause incomparable harm and hurts autistic people. We appeal to all media and news agencies to use great care in reporting the facts as well as how the facts are framed. We ask that you practice responsibility in your media coverage. Any insinuation that autism is the cause of planned criminal violence is wholly inaccurate, as there is no evidence to support this assumption.

At this time, our attention is focused on those who lost their lives and their families. We extend our deepest sympathies and continued thoughts of comfort.

Respectfully,

AWN Board of Directors: Sharon daVanport, President — Corina Becker, Vice President — Mara Fritts, Secretary & Treasurer — Lori Berkowitz, Director of Web Development

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By Matt Carey

UJA Adult with ASD Survey: the time is now to let yourself be heard

11 Dec

IAN, the Interactive Autism Network, the UJA Federation of New York and the Autism Science Foundation are working together to gather data on ASD Adults using an online survey.

Below is the text of the introduction page. I don’t see anything limiting this to U.S. participants. If you want to see action on issues of importance to ASD adults, this will be a good step.

Welcome to IAN registration and the UJA Adult with ASD Survey.

We will be asking you to complete the following:

1) IAN Registration: Complete demographic and autism spectrum diagnosis questions to register with the Interactive Autism Network (IAN) – the world’s largest online autism research project. By registering with IAN you will have the opportunity to participate in adult-focused surveys (like the UJA Adult with ASD Survey) and will also learn about other studies hoping to invite adults with ASD to participate. We still know very little about the situation or needs of adults with ASD, and IAN hopes to change this by making adult-focused ASD research easier for participants and researchers alike.

We know privacy is important to you. The IAN privacy policy begins on page 5 of the consent document which appears here and will also be available when you view the consent question in a few minutes.

You will need Adobe Reader to open and/or print the research consent document. If you don’t have Adobe Reader, you can get it here: http://get.adobe.com/reader/

2) Consent: After answering the demographic and diagnosis questions, you will be asked to consent to participate in the IAN Research project. Click “yes” or “no” to provide your consent (or not) as you choose. (If you click “no” we will not keep the information you shared in the earlier demographic/diagnosis section.)

3) UJA Adult with ASD Survey: After you consent to participate in IAN, the UJA Adult with ASD Survey will begin. Simply answer the questions to the best of your ability. We thank you for your time and your input.

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By Matt Carey

Have a response to the congressional hearing? Let it be heard

30 Nov

Yesterday the U.S. House Commitee on Oversight and Government Reform held a hearing on autism. One can see it in the videos below. The Fist videos are from the government panelists Coleen Boyle Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention and Alan Guttmacher, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health. The third video has the public panelists Bob Wright, Co-Founder Autism Speaks, Mr. Scott Badesch President Autism Society,
Mr. Mark Blaxill, Board Member SafeMinds, 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 (testimony) President Autistic Self Advocacy Network.

For the third video, here are the rough times for the start of the opening statements:

Bob Wright: 4:10
Scott Badesch: 10:00
Mark Blaxill: 16:00
Bradley McGarry:21:00
Michael John Carley: 26:00
Ari Ne’eman: 33:30

Discussions of the hearing can be found at Congressional Autism Hearing Recap (Thinking Person’s Guide to Autism) and Live blogging the autism hearing Autism hearing, round two (Autism News Beat).

If you have a response to the hearing you would like to make, they are accepting public comments for 7 days after the hearing (if I understood the Chairman correctly). One way you can is by sending a fax, using this form.

ASAN President Ari Ne’eman on C-SPAN’s Washington Journal Tomorrow (Saturday) at 9:15 AM

30 Nov

CSPAN will be hosting a program discussing autism with Autistic Self Advocacy Network (ASAN) president Ari Ne’eman tomorrow. Below is the email I received from ASAN:

ASAN President Ari Ne’eman on C-SPAN’s Washington Journal
Tomorrow at 9:15 AM

Yesterday was a historic day for the Autistic self-advocacy movement. For the first time, we had representation at a congressional hearing on autism. Although much of yesterday’s House Committee on Oversight and Government Affairs hearing focused on the same tired old questions on causation and cure, but thanks to your efforts, we had a seat at the table to offer another perspective for the first time.

Tomorrow, we’ll have a chance to continue having our voices heard. C-SPAN’s influential morning call-in program Washington Journal has invited ASAN President Ari Ne’eman to come on the show tomorrow morning from 9:15-10 AM to discuss federal disability policy, autism acceptance and the neurodiversity movement. And we want you to be a part of it.

To participate, you can call-in, email or tweet. C-SPAN has specifically urged Autistic people to participate, and has provided a dedicated call in line to help make sure we get on the air.

Call-In Numbers:
Democrats: (202) 585-3880
Republicans: (202) 585-3881
Independents: (202) 585-3882
Autistic People: (202) 585-3883
Email: journal@c-span.org
Twitter: http://twitter.com/cspanwj

Please follow us as we also livetweet from @autselfadvocacy with hashtag #AutismOnCSPAN.

I assume that times are Eastern Standard.

California Police Ignored, Mishandled Sex Assaults Reported by Disabled

30 Nov

This story from The Daily Beast: California Police Ignored, Mishandled Sex Assaults Reported by Disabled. Obviously potentially a trigger.

We’ve discussed sexual assaults in group homes in California in the past few years. Police made some of those cases priorities. The Daily Beast story discusses cases where there is a lack of even basic OK investigation:

Patients at California’s board-and-care centers for the developmentally disabled have accused caretakers of molestation and rape 36 times during the past four years, but police assigned to protect them did not complete even the simplest tasks associated with investigating the alleged crimes, records and interviews show.

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

Action Alert: Call today to support The Convention on the Rights of Persons with Disabilities!

27 Nov

The action alert below is from The Arc:

Action Alert: Call today to support The Convention on the Rights of Persons with Disabilities!
Take Action!

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being brought to the U.S. Senate floor this week. We are nearing a vote, as Senate Majority Leader Harry Reid (D-NV) indicated he will bring the treaty up to begin debate during Executive Session within the next few days.  The Arc has been working with numerous other disability advocacy groups to garner support for ratifying the treaty, which will promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.  This vote is the culmination of months of advocacy work by advocates like you and we need your help to ensure ratification.

It is important for you to contact your Senators today and let them know that you support CRPD. We need every U.S. Senator to be contacted and to know that the disability community is leading the charge for U.S. ratification of this international disability treaty. Our voice matters.

Get your friends, family, and work colleagues to make calls and use social media today to show support! Click on the “take action” link at the top of the page to get started.

You can find phone and email contact information for your Senators here, and Twitter IDs for your Senators here (Tweet using #CRPD #UNCRPD).

Tell your Senators:

I am a person with a disability (I am a family member/friend/supporter of a person with a disability) and I want to see the Senator vote in support of the CRPD this year!

The CRPD will not cost the Federal Government any additional funds.

The CRPD has been reviewed by both Republican and Democratic Attorneys General and by past Counsel to Presidents.  They confirm that it does not threaten the sovereignty of the U.S. nor does it require any new legislation to comply with the treaty. 

This treaty is good for American business and for the world.  It will allow us to bring our knowledge of making a society accessible to the whole world.

MOST IMPORTANTLY – This treaty is very important to the U.S. disability community! Following U.S. ratification of the treaty, U.S. leadership will help raise accessibility around the world, directly helping Americans with disabilities who live, work, or travel abroad.  

Sample Tweet : @(SenatorID) Vote to support the #CRPD #UNCRPD!  This is a #disability issue and we say vote YES!

Sample Twitpic: https://twitter.com/USICD/status/259376999901044736/photo/1

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By Matt Carey

A rare opportunity: a congressional autism hearing

23 Nov

A hearing is scheduled for next week by the a committee of the U.S. House of representatives: the Committee on Oversight & Government Refiorm. The Committee’s hearing is entitled:

1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism

This gives a rare opportunity to contact a member of congress when autism is on the agenda. There are many ways to do so. Consider taking the time to let people known what you think is important.

The Committee has a webpage and the Minority party (currently the Democrats) maintain a separate page. Neither site has an electronic method for feedback that I can see.

However, feedback is possible via phone and fax: Phone: (202) 225-5074 Fax: (202) 225-3974.

I have set up a webpage where you can fax the committee.

Comments can be left on the committee main  Facebook page
Minority party (Democrats) Facebook page

The committee webpage lists @darellissa (the chairman) as their Twitter handle.

In addition, the Autistic Self Advocacy Network has a Facebook event and will be gathering a group to attend the hearing.

At A Diary of a Mom, it has been suggested that one cont acre the Chair, Darrell Issa directly through his website.

The committee members are listed here and one should feel free to contact them, especially if you are in their district.

If you are able to attend, the hearing is Nov. 29 2:00 pm in 2154 Rayburn House Office Building.

To be clear, this is a committee hearing from a lame duck congress. No legislation is being considered at present. There will be some science, much politics and, I expect, more than a little theater (although I admit where politics ends and theater begins is not well defined).

Word is that the hearing will include government and non government members in two panels.

Alan Guttmacher, NIH NICHD
Coleen Boyle, CDC

And
Bob Wright, Autism Speaks
Scott Badesch, Autism Society
Mark Blaxill, Safe Minds
Rebecca Landa, Center for Autism and Related Disorders Kennedy Krieger Institute

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