Having Words with Autism

John J. Ordover www.sohodigart.com In this country we like to fight things, whether it’s the Fight Against Poverty or the Fight Against Drugs or even the Fight Against Gentrification, we sure do like to fight. We fight cancer, we fight child abuse, we give out soup to fight hunger, we fight, and fight, and, as on The Simpsons, we fight fight fight fight fight! So, is it wrong to say we are fighting autism when we stand up for those on the spectrum? My wife, who has an Asperger’s diagnosis, says it is. Others agree; others disagree, as a Google search for the term “fight autism” brings back over half-a-million listings. Here’s the word on why this phrasing issue is important to me and to others trying to raise money to help people on the spectrum: At 6pm on February 16th, 2012, at 6pm, at The SoHo Gallery for Digital…

Tired (of Autism Misrepresentation)

Lydia Brown autistichoya.blogspot.com From the editors: We hope that even veteran autism parenting advocates and self-advocates will consider this post part of their neurodiversity education, along with Todd Drezner’s recent HuffPo article Nickels, Dimes and ‘High-Functioning’ Autism — and that it leads to productive reflection and discussion. From the author: Trigger warning: This is mostly about ableism and a response to other, very triggering things, as well as including lots of direct quotes of ableist stuff. An accessible audio recording: Tired – Autistic Hoya by autistichoya I’m tired of being misrepresented. I’m tired of seeing the principles of self-advocacy misrepresented. And I’m tired of seeing the autism rights movement misrepresented. Let me be clear. I’m not talking about allies, or about people who were just thrust into Autismland and don’t yet know much, if anything, about the constant conflicts that erupt here. This isn’t about you. This is about people…

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How to Support the New Thinking Person’s Guide to Autism Book

The Thinking Person’s Guide to Autism community is growing rapidly; it’s no surprise we keep getting requests about how to support our new book. Thank you, community! We appreciate every last effort to spread desperately needed positive, evidence-based autism information and advice via our book — whether you buy a book for a neighbor, an autism grandparent, the family of a child with a new diagnosis, an adult friend who may find it insightful — or buy a box of books to hand out at the next meeting you attend. There are many ways to help get the word out about the TPGA book, several of which do not require spending money. Some ideas: Post a review on Amazon.com. Tell the rest of the world why our book matters, and why it helps! Ask your library to purchase a copy of the book. The more requests a library gets, the…

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Reflecting on My Future Self

Jennifer Byde Myerswww.jennyalice.com Grocery shopping this morning,  a mom and her son passed by me in the floral department. She is probably in her 50’s because her son looked about 10 years older than mine… and yes, her boy plays for our team: Autism. Right down to the 6 foot 2 inches of young man flapping his hands next to the strawberries and “oooo–Wheeeeing” in the dairy section. I could tell before the stims though, it’s amazing how quickly I can spot a person with autism who’s in the same part of the spectrum as Jack. When I see another family with a special needs child, I always try to smile — at the child, or the parent, hopefully both, to show that, even though I don’t have a stamp on my forehead or my son in tow, I understand a little bit about their life. I always hope that…

Being the Change We Want

(Or, A Good Dose of Humility Never Hurts) Kim Wombles www.kwomblescountering.blogspot.com I’ll have been involved in the online autism community for three years this March. I’d say the community has changed, but I’m thinking it’s more that I changed over the years. People still bicker about the same kinds of things (some of the people are the same ones who’ve been at it for years), and the divides seem to be more entrenched than ever before, if you go looking in those places. I try to avoid that, now. Sometimes, when I make the round of blogs, of bloggers posting their deepest feelings, only to be roundly attacked by others, I want to respond, to get into the middle of things. Most of the time, though, now, I don’t. I shrug and move on. I ask myself first what possible good could come out of my investment. It isn’t that…

How Autism Parents Can Listen to Self-Advocates

Shannon Des Roches Rosa www.squidalicious.com Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. –Winston Churchill You’d think we parents of kids with special needs — righteous avengers that we so often are — would be extra-invested in listening to the self-advocates who share our children’s experiences, who in many cases used to be our children. You’d think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I’d written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You’d think that, knowing how many times even well-meaning people have dismissed my son’s needs or spoken to him as though he was an obedient puppy, I’d understand how self-advocates might have very little patience for parents…

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Interview: Seth Mnookin on Championing Smart, Compassionate Vaccine Information

Seth Mnookin’s book The Panic Virus: A True Story of Medicine, Science, and Fear is a smart, compassionate, detailed history of  vaccine misinformation and distrust. It’s being re-released in paperback tomorrow, with a new cover, a more direct subtitle, and a new afterword. TPGA editor Shannon Rosa talked with Seth last year about the motivation and goals behind The Panic Virus; she spoke with him again last week about his book’s intended audience; the critical and oft-misconstrued distinctions between vaccine court rulings and scientific proof; the frequently misunderstood role of vaccine reporting and compensation programs like VAERS and NVICP; and how pediatricians, OB/GYNs, and parents themselves can all contribute towards improved — and best — vaccine information practices. —- How are you feeling about the impact your book has had, with respect to your original goals? Are you reaching the folks you hope to reach? People who are aware of…