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The State of Autism Research: TPGA Takeaways From IMFAR 2016

Shannon Des Roches Rosa with Carol Greenburg Your faithful TPGA editors spent most of last week in Baltimore, Maryland at IMFAR, the International Meeting for Autism Research. We gleaned as much as we could from the 2000 scientists, professionals, autistic people, and family members from all over the world who spent three full days talking about the most current findings and trends in autism research. But we didn’t cover everything or meet everyone we wanted to, because doing so is not physically possibly without a Time Turner. (If you ever want to experience abject FOMO — fear of missing out — by all means, go to IMFAR.) Overview Ninety-nine percent of the researchers at IMFAR are the nicest, most well-meaning scientists one could ever meet, which makes for a friendly atmosphere. We were happy to see significant progress on some research fronts: only a single presentation about vaccines, and it…

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Sometimes Accommodations Aren’t Enough: Autism and Anxiety

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, John Elder Robison talks about why accommodation is important, yet may not be enough to help autistic people like him with co-occuring conditions such as anxiety. John Elder Robison jerobison.blogspot.com With April being Autism month, the folks at TPGA asked me to write about accommodations. How about anxiety, Shannon asked? Foolishly, I agreed. After thinking about the topic for hours, till smoke dribbled from my ears, I cannot conceive of any accommodation I could request around my anxiety. Photo © John Elder Robison [Image: Close up of water running over a rock in a stream.] For me, anxiety is one of the most disabling aspects of autism, and it’s with me — at least at a low level — most all the time. I am almost…

Switched On: A Frank Conversation With Author John Elder Robison

[image: Book cover, with the title, “Switched On: A Memoir of Brain Change and Emotional Awakening”] The new book Switched On is author John Elder Robison’s deeply personal account of seismic shifts in his emotional, social, and perceptual responses to other people, the world, and his own memories — due to participating in brain research on Transcranial Magnetic Stimulation (TMS) and autism. I spoke with Mr. Robison about his hopes in choosing this journey, its costs in terms of his own health and happiness, his autism advocacy, and the risk of frantic parents assuming his story means they need to use TMS on their autistic kids. Thinking Person’s Guide to Autism: Are you concerned that people might see Switched On as an argument for “normalization” treatments for autistic people? Even though you are careful to emphasize that “we cannot know the future, or the potential, of anyone,” even though you…

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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.…

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John Robison at IMFAR: On Autism Rights, Ethics, & Priorities

John Elder Robison was a discussant for the Autism Social, Legal, and Ethical Research Special Interest Group at the 2014 International Meeting for Autism Research (IMFAR). He ended up taking the group to task, stating that the autism science community is headed for disaster if it does not change course on several factors – and noting for context the larger size of the US autistic community in proportion to other minority groups such as Jewish or Native American communities. Mr. Robison asserted that autistic people need to be the ones providing oversight and governance for autism research. He condemned the use of words like “cure.” He pointed out that researchers’ explicit or implicit efforts to eradicate autistic people is a formula for disaster and needs to stop. And he affirmed that memoirs and narratives written by autistic people are more trustworthy than writing about autism by nonautistics. Many thanks to…

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Raising Cubby: An Interview With John Elder Robison

[image: Excerpts from the cover of Raising Cubby: A white background with black block text reading “John Elder Robison” atop larger red block text reading “Raising Cubby” atop smaller black block text reading, “A father and son’s adventures with Asperger’s, Trains, Tractors, and High Explosives”. On the right is a toy motorcycle with two riders, including a child in a sidecar.] John Elder Robison’s book Raising Cubby is a must-read for unabashed geeks and parents alike. His wry and affectionate memoir describes, in part, what it’s like to be a late-diagnosed “Aspergian” raising a son who, it turns out, is also Autistic. But the book’s strongest themes are Mr. Robison’s obvious delight in parenting, and his determination to help Cubby thrive (which he has) despite friction with the educational, and later legal, systems. We spoke with Mr. Robison about various elements of Raising Cubby, as well as his next steps…

Person First: An Evolution in Thinking

Jess at Diary of a Mom www.adiaryofamom.wordpress.com If you were to sit down and read my blog Diary of a Mom from its inception back in 2008, I’m sure  you’d notice some pretty dramatic changes. Many of the words I use and the way I use them have changed. And the change in verbiage is reflective of a change — an evolution really — in my understanding of autism. When Brooke was first diagnosed, I bristled at the word ‘autistic’ when it was assigned to her in conversation. I actually found it offensive. “Person first!” I would shout in my head as I calmly responded, “my daughter HAS autism,” emphatically yet (theoretically) politely ‘correcting’ the perceived gaffe. And then, somewhere along the line, I read THIS: Jim Sinclair’s Why I Dislike ‘Person First’ Language. And something shifted. I had never considered the words nor what they represented from the inside…

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John Elder Robison and Autism Acceptance Month

We’re featuring “Slice of Life” conversations with Autistics of all ages — kids through adults — throughout April’s Autism Acceptance Month Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label. We are the people in each other’s neighborhoods, and the more we know about each other — the more visible autistic people and children are — the more common autism acceptance will be. That is our hope.  Today we’re talking with John Elder Robison, author of the books Look Me in the Eye and Be Different, as well as the mastermind behind Ace Frehley’s light up guitar (and so hero to anyone who ever owned a KISS lunchbox). What is your name? John Elder Robison Do you have a website? www.johnrobison.com and www.robisonservice.com. What would you…

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Heeding Autism’s Aesop

Earlier this year we interviewed John Elder Robison, but today TPGA editor Carol Greenburg gives her unique perspective as she reviews Mr. Robison’s new book, Be Different. -The Editors Anyone who has ever tapped on the window of, but cannot open the door to the world of normalcy (wherever that is) owes it to themselves to buy Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachersby the luminously wise John Elder Robison, author of Look Me in the Eye, a 2007 memoir that well earned its place on the New York Times bestseller list. I’m on the autism spectrum, myself. Like Mr. Robison I was diagnosed in my forties, which means I was born long before Aspergers was generally recognized as a diagnosis, too early for effective intervention. For me Be Different, the follow-up to Mr Robison’s ground-breaking memoir Look Me in the…

At the Dog Park

T.C. www.ihavethings.blogspot.com I vacillate on the autism thing, and how it applies to N. I use it around the school, because it is a strap, a grabbing-on point, a way for people to understand my son and–very much more to the point–to justify putting forth time, effort, and especially money to help him. I use it because doctors and therapists have used it to describe him. I use it because it’s the primary disability listed on his IEP. But there are so many ways in which he doesn’t seem, to me, to fit on the spectrum part of the spectrum. I describe him, often, as the triangular peg who not only doesn’t fit in the round hole, but doesn’t look all that much like the square peg, either. And yet. And yet, professionals of all stripes see him on a regular basis, and talk to me about him with concern…