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The Autistic Self-Advocacy Network: A Giving Tuesday Org to Support

TPGA Editor Carol Greenburg [Image: Woman with short platinum hair, beige skin, rimless glasses; wearing a red shirt and holding a sign that reads, “I support ASAN because we’re the best experts on what we need.”] It’s Giving Tuesday. And we’re just going to quote Ari Ne’eman of The Autistic Self-Advocacy Network: “December 2nd is #GivingTuesday — a national initiative in which those who can are urged to make a contribution to a cause that matters. For those of you who can afford to do so, I’d like to ask you to make a contribution to support ASAN’s ongoing work to empower people with disabilities and our allies. If you can’t afford to make a financial contribution, consider urging your friends on social media to do so by joining our thunderclap on Facebook, Twitter or Tumblr. “Please consider making a contribution to support ASAN’s important work and help advance the…

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Voices for Vaccines: A Giving Tuesday Org to Support

We’re grateful to our friends at Voices for Vaccines for helping us bust vaccine-autism myths while supporting autistic people. We’re also grateful for their tireless work in making sure the anti-vaccine voice is not the default parent voice broadcast during conversations about immunization. Tomorrow, December 2, they are asking for our help in getting pro-vaccine voices heard by gathering 1,000 donors who are willing to put their money where their anti-disease opinion is and give to VFV as part of their Giving Tuesday drive. TPGA is happy to support Voices for Vaccines and to take these simple steps to help spread the word to 1,000 potential donors for tomorrow! Here’s how you can help: 1) Join the Facebook event and invite friends: https://www.facebook.com/events/666509686779809/ 2) Visit VFV on Giving Tuesday and donate any amount, great or small. www.voicesforvaccines.org/support 3) Share this video widely with friends, family, and colleagues: Thank you for…

Autism Parents, Self-Advocates, and Shared Concerns

Shannon Des Roches Rosa Let me tell you something that may or may not surprise you: When it comes to public discussions about autism, parent and professional voices tend to dominate, and autistic voices tend to be excluded. While that dynamic is changing, primarily due to autistic advocates’ refusal to be sidelined in stories about their own community, and in part through the many communities that encourage parents to discover, listen to, and respect the experiences of those who have lived autistic lives — autistic voices too often still get dismissed, ignored, or outright disrespected. I’m not begrudging parents of autistic kids the right to tell their own stories from parent perspectives, obviously, being that I’m one of those parents myself. But I do find it unsettling when parent stories mention autistic perspectives only to belittle or reject them, as Anne Spence did recently in her otherwise thoughtful story When…

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One Autistic Teen’s Disneyland Success Story

Shannon Des Roches Rosa www.Squidalicious.com Have you or, if you’re a parent, have your kids ever been to a Disney theme park? If so, does it hold you or yours in thrall the way it holds my teenage son? Leo has been asking to go to Disneyland nearly every day since his last visit 20 months ago, because the Land of Mouse is his very favorite place, largely thanks to its disability accommodations. But after that Happiest Place on Earth changed that disability pass system last year, I balked at going. One of Leo’s personal philosophies is Anything Different Is Bad. Really bad. So a different Disneyland experience would be Really Bad. Plus I heard nightmare accounts of vacations gone sour, endless lines, folks having meltdowns, and more (DRtC*). I didn’t think Leo deserved to have a rotten experience at a place he considered his personal Wonderland. Best to stay…

Disability: Considering Insider vs. Outsider Perspectives

Amanda Forest Vivian adeepercountry.blogspot.com This post was originally included in our 2011 Dialogues series. But we think it deserves separate attention, and are republishing it with the author’s permission.  —- This is just a theory, so be gentle. But I think a lot of problems between non-disabled people and disabled people might have to do with the fact that for most born-disabled people, their disability is ego-syntonic (integrated with their self-image). One! Ego-dystonic is an psych term for an aspect of a person that doesn’t fit their self-image. For example, if someone lost their legs in an accident, they would probably wake up the next day and see a body that didn’t seem to them like their real body. On the other hand, if someone is born without legs their disability is usually ego-syntonic, so they feel as attached to their body as anyone else.  They don’t feel the same…

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An Open Letter to Radiolab: Stop Your Dangerous Autism Reporting

Dear Robert Krulwich, Jad Abumrad, and the Radiolab team: Your autism-focused episode Juicervose has destroyed my faith in Radiolab and the integrity of its reporting. Rubbernecking about autism and autistic people is usually the realm of inexperienced journalists, but you don’t have that excuse. In fact, you have a MacArthur “genius grant” recipient on your team specifically because of your focus on “bringing new ideas to people.” So why did you choose to amplify the same hurtful, tired autism stories the media always airs? And why didn’t you show more compassion for autistic people themselves? Sure, you talked to Temple Grandin. With respect to both her and your team, every person on the planet has heard what Temple Grandin has to say about autism. Her ideas are not new ideas. And yes, you talked to Owen Suskind. It was wonderful to hear his voice and his perspectives. I am sincerely…

A Critical Response to “The Kids Who Beat Autism”

Steven Kapp, PhD I critically lectured on autism and “outcomes” like “recovery” for my UCLA Autism and Neurodiversity class the day the New York Times article The Kids Who Beat Autism came out, then saw a related statement I wrote* for the Autistic Self Advocacy Network shared widely later that same day — so I mulled over how much more attention to give the NYT story.  I finally decided to write an updated response for my students, focusing on the cited research, including Catherine Lord’s critiques of Deborah Fein, my critiques of Lord, and my critiques of the new article. I otherwise sat on the response for days but decided to share it on Facebook as a status update and then, with my friend Amy Sequenzia’s encouragement, as a public Note. Now, following several TPGA editrixes’ well-deserved vacations, I am honored to give the response wider exposure through my first…

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Busting Anti-Vaccine Myths While Supporting Autistic People

I was given the opportunity to head a “Let’s Talk About Autism” discussion for the excellent organization Voices for Vaccines, in order to help vaccine advocates understand how anti-vaccine information can be hurtful to the autistic community, and with the hope that better understanding about autism as part of pro-vaccine messaging will help spread acceptance of autistic people like my son Leo. If you missed the discussion, which was followed by a Q&A, one option is to listen to the Voices for Vaccines “Let’s Talk About Autism” recording. Or you could read the below version of the talk I gave, though the live version include some improvisation.  I’ve been writing about autism at www.Squidalicious.com since 2003, when my son Leo was first diagnosed as autistic. I’m also a founding editor at Thinking Person’s Guide to Autism, where we have a very active Facebook community, and a BlogHer contributing editor for…

“How Do You Not Have Hate in Your Heart?”

One of our autistic community members, who was frustrated with being treated dismissively by non-autistic people, asked us this question via email. Another of our autistic community members answered the question, with both thoughtfulness and strategic advice. The two then gave us permission to post their exchange. We hope readers who are not autistic will show respect by listening, learning, and asking questions if appropriate; and that those who are autistic will find (and share) their own strategies and advice. —- Question for autistic people: How do you not have hate in your heart? I got into a discussion with several people who are not on the spectrum, and was just battered from all sides by ableism, willful ignorance and ad hominem attacks. No one was interested in what I had to say. I was called selfish, stuck up, angry, and expletives I can’t repeat here. I was even told…