Ableism FUBARs and Constructive Recoveries

Shannon Des Roches Rosa, with Carol Greenburg, Patricia George, and Christine Langager The disability and empowerment-themed website The Mighty recently published a post called Introducing: Meltdown Bingo, and sparked an actual Internet meltdown. In the post (since retracted by The Mighty’s editors), a parent used the popular Bingo Card meme to detail challenging aspects of their autistic child’s meltdowns. The online backlash from autistic and disability activists was understandably swift and strong, underpinned by a history of those activists’ dissatisfaction with The Mighty coupled with dismay over yet another hijacking of autistic children’s most vulnerable and misunderstood moments justified as parenting “honesty.” But here’s the thing most backlash commentary missed or ignored: The mother who wrote the post is autistic. Anyone who clicked on the author bio for the original Meltdown Bingo post would have read the following: “Christine is an adult-diagnosed autistic mother to autistic Cameron, 8.” Also missing…

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Free Workshop in San Francisco: When Autistic Children Are Aggressive or Self-Injurious

San Francisco Bay Area Locals: Please come to a free workshop at Support for Families of Children With Disabilities, in San Francisco, on Saturday, January 9th. When Autistic Children Are Aggressive or Self-Injurious: Best Support Practices Photo © Akuiliu, on Flickr [Image: Upset-looking East Asian child] Why do some autistic children and teens become self-injurious or aggressive? How can parents and caregivers help the kids in their care get through meltdowns safely, protect the kids themselves as well as family members, and anticipate and avoid future incidents? Come hear from parents, professionals, and autistic people themselves about best practices for understanding and supporting autistic people during these kinds of crises. There will be a Q&A after the presentations. Speakers include: Dr. Clarissa Kripke from UCSF, talking about overlooked medical and health triggers, as well as meltdown support strategies. Brent White and Lindsey Anderson from Berkeley’s Ala Costa Adult Transition Program,…

Re: Autistic boy, 11, kills himself

Kit Mead kpaginatedthoughts.blogspot.com —- Re: Autistic boy, 11, kills himself I phrase it that way. I don’t phrase it the way the article did. Blaming the autism and ADHD for suicide. This was a boy who befriended a locust in a tree. His mother said he felt like the adults at his school didn’t care and could not make connections in his class. Had a gift with animals. *** Isolated and miserable, I managed to find refuge in certain places. The art room, where the art teacher encouraged me to explore with sharpies and gel pens and acrylic paints. The debate room. My 10th grade English teacher’s classroom. The scene shop, where I would frenetically sweep and clean the entire area after school. Unlike Shane Laycock, I had supportive adults in my high school. I don’t know how, considering the story told by so many of us of being shunned…

Why The New 1 in 45 Autism Numbers Shouldn’t Surprise You

Shannon Des Roches Rosa www.thinkingautismguide.com We’ve said it before, we’ll say it again: There Is No Autism Epidemic. Not even after US estimates for autism prevalence recently rose to 1 in 45. How do we know there’s no autism epidemic? Two reasons: A comprehensive survey of autism prevalence in Korea estimated a rate of 1 in 39, as reported in 2011. There’s no reason US rates should be much different, so the new numbers are likely portraying reality more accurately, rather than indicating reality is changing. Researchers have been saying for years that autism’s prevalence has mostly risen in response to changes in diagnostic criteria, rather than due to environmental triggers or other causation ideas. The role of changing diagnostic criteria in rising autism rates is particularly relevant right now, given that theme’s prominence in Steve Silberman’s award-winning, current bestseller NeuroTribes. Silberman devotes a sizable section of the book to…

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NeuroTribes and the Proper Use of ‘Neurodiversity’

Shannon Des Roches Rosa www.squidalicious.com Steve Silberman’s NeuroTribes is a large, densely packed book about autism’s past, present, and future. I found myself overwhelmed by the amount of information contained in each individual paragraph, in considering how much research and synthesis it took to create those paragraphs — and in knowing that NeuroTribes’s information matters so much, while acknowledging my kind of brain can’t possibly retain it all.  It doesn’t surprise me, then, when other people have trouble remembering every important point in NeuroTribes, because the book is an 500-page information tsunami. Due to those info overload risks, however, some of NeuroTribes’s themes need to be repeated more than once or twice for people to get them right.  One theme that needs more emphasis is NeuroTribes’ clarification about neurodiversity: The term is not limited to autistic people who communicate independently, or indeed only to autistic people.  Neurodiversity is the full…

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How We Autistics Got to Here: Reviewing Steve Silberman’s NeuroTribes

Patricia George-Zwicker www.persnicketypatricia.ca [Image: White woman with dark hair wearing black-rimmed glasses, and intently reading the book NeuroTribes.] When Shannon Rosa contacted me and asked if I’d be interested in doing a guest review for Steve Silberman’s highly anticipated book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, I excitedly and nervously said yes! Like so many others, I’ve been anxiously awaiting what I hoped would be a game changer for the Autism community and Autistic people. I’ve visited many book stores over the years in search of credible information or stories by people like me, especially stories and information from Autistic women. I often left disappointed and frustrated by the lack of history, compassion, accuracy and the almost non-existent input from actual Autistics like myself, finding instead a minefield of cures, desperation, martyr parents, male-dominated information and — said with respect — books about or by one…

Liz Feld and Autism Speaks: No, Really, You Need to Listen

Shannon Des Roches Rosa www.thinkingautismguide.com Liz Feld may be the President of Autism Speaks, but her recent A Call for Unity letter is not exactly presidential. Unless your idea of a good President is someone unable to take clues from the majority of the people they are supposed to be leading and serving. Ms. Feld’s letter is as tone-deaf and wrongheaded as then-President George W. Bush feeling insulted by Kanye West’s post-Katrina remarks that Bush “doesn’t care about Black people” — instead of asking himself why Kanye was so outraged. Feld’s letter is an equally clueless, defensive, and dismissive response to NeuroTribes author Steve Silberman’s Los Angeles Times op ed Autism Speaks Needs to Do a Lot More Listening, in which Silberman critiques Autism Speaks outright on its leadership, community outreach, and research investment practices. Feld rarely addresses Silberman’s points directly (she doesn’t even link to his article), choosing instead…

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NeuroTribes Is Finally Here: Celebrating With a Review, and a Giveaway

Shannon Des Roches Rosa  www.Squidalicious.com   Steve Silberman and Leo Rosa [image: a white man with short salt-and pepper hair, and a white teen boy with short curly brown hair, sitting on a green bench.] Steve Silberman’s long-awaited book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity arrives in bookstores today. Finally! If you have any interest in autism whatsoever, then trust me, you need this book. (No, really. We are so excited that NeuroTribes exists that we’re hosting a giveaway, details below.) I’ll be upfront with my disclosure: When Silberman described his intention to write a book that “upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently,” my family and I agreed (and were honored) to be included in the project. But I would recommend NeuroTribes regardless; I’ve been pining for an autism…

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Whither Autism Research? Observations From IMFAR 2015

Shannon Des Roches Rosa www.ThinkingAutismGuide.com twitter.com/shannonrosa TPGA has made a point of attending IMFAR, the annual International Meeting for Autism Research, since 2011. We believe it is important to go beyond learning about the current state of autism research by talking with and listening to researchers directly — and not just about current research, but about how research can better benefit autistic people, in addition to those who love, live, and work with autistic people of all ages and abilities.  Here is what we learned and observed at IMFAR 2015, which took place last month in Salt Lake City, Utah. Note that the IMFAR conference itself — with scores of presentations and hundreds of posters — is overwhelming, and we only got to see part of what was actually presented and discussed in the full conference. We also live-tweeted several sessions from the conference, and compiled that coverage at Storify.…