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Autism and Biowearables: An interview with Matthew Goodwin at IMFAR 2017

Carol Greenburg and Matthew Goodwin at the IMFAR 2017 Press Conference [image: White woman with short platinum hair and glasses posing with a taller white man with a shaved head and goatee.] Northeastern University researcher Matthew Goodwin gave an IMFAR 2017 keynote speech about his work on “Wearable Sensor-Based Physiological and Physical Activity Biomarkers for Use in Laboratory and Naturalistic Environments to Assess Arousal and Repetitive Motor Movements in Individuals with Autism Spectrum Disorder.” Thinking Person’s Guide to Autism’s Carol Greenburg and Shannon Rosa, and Autism Women’s Network’s Corina Becker, spoke to Goodwin after the IMFAR press conference, about the real-life applications of his work, and how they can benefit autistic people. Carol Greenburg: What constitutes a behavior, insofar as it’s something that needs to be mitigated? A behavior like flapping or other “stims” may mean something different to the person who’s doing the intervention, as opposed to the autistic person themselves.…

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What the Fidget Spinners Fad Reveals About Disability Discrimination

Aiyana Bailin restlesshands42.wordpress.com Traducción al español incluida a continuación de la versión en inglés Photo © Robert Couse-Baker / Creative Commons [image: Hand holding a spinning fidget] I’m angry about the sudden popularity of fidget spinners, but probably not for the reasons you think. I’m not mad that they’re disruptive in class, or obnoxiously trendy. I’m furious because of what they reveal about societal power structures, and the pathologizing of disabled people by non-disabled persons. Autistic people (and others with developmental disabilities) have been fighting a war for decades. It’s a war against being forcibly, often brutally, conditioned to behave more like neurotypicals, no matter the cost to our own comfort, safety, and sanity. And those of us who need to stim in order to concentrate (usually by performing small, repetitive behaviors like, oh I don’t know, spinning something) have endured decades of “Quiet Hands” protocols, of being sent to…

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Highlights: Supported Decision-Making in Medical Scenarios

Highlights: Supported Decision-Making in Medical Scenarios Storify by Shannon Rosa Thu, May 18 2017 18:39:11 Edit Highlights: Supported Decision-Making in Medical Scenarios Because medical decisions often need to be made in stressful situations, involve complex information, and require weighing of significant risk, planning is important. There are many ways that people with intellectual and developmental disabilities (I/DD) can receive support to make decisions about the health care they want to receive. webex · Wed, May 17 2017 22:09:14 [image above: The Arc’s logo: An orange/yellow paint swoosh on a white background, above black text reading, “The Arc”.] The following tweets are from a webinar hosted by The Arc National’s Center for Future Planning, on supported decision making for people with intellectual and developmental disabilities, both in general, and regarding medical care. The speakers discussed how supported decision making works, why it’s a less restrictive option than guardianship, and how people…

IMFAR 2017: Mental Health Crises in Youth with Autism Spectrum Disorder

IMFAR 2017: Mental Health Crises in Youth with Autism Spectrum Disorder Storify by Shannon Rosa Sat, May 13 2017 21:08:54 Edit IMFAR 2017: Mental Health Crises in Youth with Autism Spectrum Disorder Clinical experience suggests such crises occur frequently among individuals with an Autism Spectrum Disorder (ASD). Despite the scope and impact of this issue, there is no systematic research on the measurement or management of mental health crises in individuals with ASD. Content note: Discussion of mental health issues, including suicide and other self-harm. ThinkingAutismGuide@thinkingautism Now: Mental Health Crises in #autistic youth. #IMFAR2017 Sat, May 13 2017 17:31:17 ReplyRetweetFavorite First speaker: Session chair L. Kalb: Psychometric Analysis of the Mental Health Crisis Assessment Scale in Youth with Autism Spectrum Disorder AutismWomen’sNetwork@autism_women Psychometric Analysis of the Mental Health Crisis Assessment in [Autistic] Youth #IMFAR2017 Sat, May 13 2017 17:33:36 ReplyRetweetFavorite ThinkingAutismGuide@thinkingautism What = mental health crisis? Settled on APA def:…

IMFAR 2017: ASD & Sexuality Panel

IMFAR 2017: ASD & Sexuality Panel Storify by Shannon Rosa Sun, May 14 2017 19:06:34 Edit IMFAR 2017: ASD & Sexuality Panel This much-needed session demonstrated trends and countered many myths about autistic people and sexuality, emphasized the need for more sex ed (including safety) for people of all abilities, and demonstrated that autistic people are more likely to be (or come out as) LBTQ+ than non-autistics. The first speaker was L. A. Pecora on Sexuality in ASD: The Female Profile Jon Spiers@YesWeJon Now autism and sexuality. Autistic women at higher risk of sexual victimisation and sexual abuse. #IMFAR2017 Sat, May 13 2017 21:15:46 ReplyRetweetFavorite Rachael Lucas@karamina @YesWeJon Yes, absolutely. And liable to end up in emotionally and or physically abusive relationships. #IMFAR2017 Sat, May 13 2017 21:16:57 ReplyRetweetFavorite Felicity Sedgewick@SedgewickF Talk on sexuality in women with ASD at #IMFAR2017 – can’t wait to hear about findings as this is…

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IMFAR 2017: Incorporating Autistic Intellect in Autism Research Special Interest Group

IMFAR 2017: Incorporating Autistic Intellect in Autism Research Special Interest Group (2) Storify by Shannon Rosa Fri, May 12 2017 17:14:15 Edit IMFAR 2017: Incorporating Autistic Intellect in Autism Research Special Interest Group (2) Today’s panel was a follow-up to last year’s SIG: https://storify.com/shannonrosa/bridging-the-research-gap-incoporating-autistic-in The (fabulous) #IMFAR2017 Incorporating #Autistic Intellect in Research SIG speakers: Steven Kapp, @johnrobison, Dena Gassner, @Tumbalaika. pic.twitter.com/ahi1RZXpR1 ThinkingAutismGuide@thinkingautism · Fri, May 12 2017 17:09:19 ReplyRetweetFavorite [image description for photo above: Three white men and one white woman posing for a photo in a hotel conference room.] John Elder Robison@johnrobison We are about to start our SIG session on involving autistic people in shaping research. Second year for this #IMFAR2017 session Fri, May 12 2017 14:06:40 ReplyRetweetFavorite ThinkingAutismGuide@thinkingautism Now: At the IMFAR panel on integrating #autistic intellect in #autism research: Part 2. #IMFAR2017 Fri, May 12 2017 14:18:43 ReplyRetweetFavorite ThinkingAutismGuide@thinkingautism #Autistic people need to participate in #autism…

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Why Supported Decision Making Is a Better Choice Than Conservatorship

Image © Falashad | Creative Commons   [image: Smiling white woman with crown braids hugging a person with an auburn ponytail.] Many families or guardians assume that when high-support autistic teenagers transition to adulthood, they automatically need to be legally conserved for their own protection. But that’s isn’t necessarily true. We spoke with UCSF’s Dr. Clarissa Kripke about why Supported Decision Making can be a better choice than pursuing conservatorship, and the many reasons why. —- Dr. Clarissa Kripke: When people with disabilities and their families start to think about transitioning from child to adult services, they are often encouraged to consider conservatorship.  Conservatorship is a legal process where a court appoints an individual or organization to make decisions for an adult. Courts do this after finding that the adult is unable to provide for his or her own needs for health, food, clothing, or shelter. They must be found unable…

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Autism and Suicidality: Conversations Between Researchers and Autistic People

Photo © Gayan Gunawardana | Creative Commons [image: Backlit photo of a sad ponytailed person with their head down, in profile in front of an ocean sunset.] Dr. Sarah Cassidy co-chaired a SIG (Special Interest Group) on Autism and Suicidality at IMFAR 2016, in Baltimore. We weren’t able to attend her session, but Dr. Cassidy was kind enough to take time, later that same day, to talk with TPGA editors Shannon Rosa and Carol Greenburg, autistic autism researcher Dr. Steven Kapp, and Autistic Self Advocacy Network Executive Director Julia Bascom. The following is a transcript of our conversation. —- Shannon Rosa: Tell us about what you discussed in the SIG. What has your research revealed about suicidality in autistic people? Dr. Cassidy: We’ve published two studies so far. The first study we did, which is free to access in the new Lancet (Psychiatry) journal, was a medical chart review, a…

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Autism Researchers You Should Know: Dr. Deb Karhson

Dr. Deb Karhson is a postdoc at Stanford University, where she researches biology-rooted therapeutic approaches to improving autistic quality of life. She is also the “baby sib” of an older autistic brother. We are looking forward to having Dr. Karhson as a featured researcher during this week’s #AutIMFAR chat at IMFAR, the International Meeting for Autism Research. Even better, we got to  interview her beforehand: Dr. Deb Karhson [image: Smiling Sri Lankan/Nigerian-American woman with long curly black hair pushed to one side, wearing glasses & hoop earrings.] TPGA: Tell us about your research: What is your focus? Dr. Deb Karhson: Broadly my current work is focused on biomarker discovery and drug development in for autism, which simply put means I’m looking for objective, testable, biological signatures of autism and whether candidate biomarkers can be leveraged for biotherapeutic development. And specifically, that means I’m interested in understanding the role of the…

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Why Everyone Should Read The ABCs of Autism Acceptance

Patricia George www.persnicketypatricia.ca The ABCs of Autism Acceptance [image: Book cover, with white text reading “The ABCs of Autism Acceptance” on a background of multicolored representations of letters of the Roman alphabet, above black text on a white background, reading, “by Sparrow Rose Jones.”] I’ve been an avid reader my whole life, so when I was asked to review The ABCs of Autism Acceptance by Maxfield Sparrow, and saw that it was “only” 152 pages, I thought, “this won’t take long to read, so sure, I’d love to!” 

I was wrong. This is the largest 152-page book I’ve ever read. In fact, I wrote more notes for this book than I did for a 500-plus page book I reviewed in 2015.

 The book’s title is straight-forward: Maxfield uses the Roman alphabet as a way to educate the reader about autism acceptance from an autistic person’s point of view, while interlacing…