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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…

How ASAN Helped Issy Stapleton Get Justice

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse. TPGA: How did ASAN get involved with the Stapleton case? SC: ASAN generally issues statements after individual incidents of violence that come to our attention, often statements concerning media coverage. But with the Stapleton case, since I’m a lawyer and I started at ASAN one month after the attempt on Issy’s life, we really wanted to see if we could influence the trajectory of the case, not just the…

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Dr. Jonine Biesman: Avoiding Crises Through Respectful Parenting

Photo of Dr. Biesman from theAAPN.org [Image description: Woman w/beige skin, long curly dark hair, & brown eyes, smiling widely, directly at the camera.] Dr. Jonine Biesman specializes in working with neurodiverse children and adolescents, as well as with their parents and larger family system. She is a training leader and interventionist in DIR/Floortime. We talked with Dr. Biesman about best practices for parents who need help understanding and parenting kids with aggressive or self-injurious behaviors, about presuming competence in children who need communication support, and about the potentially dangerous costs of parent-enforced compliance. Here’s what she had to say: [Best practices] doesn’t just apply to autism. With any child, whatever age, whatever person, who’s having a hard time, the first step really is understanding. What is that behavior really representing, what is it a manifestation of, and what’s really being communicated. As soon as anyone’s needs are better met,…

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…

DIR/Floortime: From Research to Practice

We were recently invited to attend the Floortime Coalition of California’s Fourth Annual DIR/Floortime® Conference: From Research to Practice, in Lafayette, California, and thought our community members might be interested in what the conference speakers had to say. (We are sharing rather than endorsing DIR-specific information.) For those unfamiliar with The DIR® Model, or Developmental, Individual-Differences, Relationship-based Model: it is “an interdisciplinary framework for assessment and intervention developed by Drs. Stanley Greenspan and Serena Wieder. It is used to guide parents and professionals in designing a program tailored to each child’s unique strengths and challenges and support developmental progress.” We live-tweeted most of the conference speakers’ talks, and collated those tweets into Storify posts for easier reading. We’ve pulled out a quote from each speaker to give a sense of their presentation. There is so much potentially useful information in these talks about rethinking parents’ roles, parent/child & therapist/client relationships,…

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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…