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How Autism Conferences Can Better Include and Respect Autistic People

Shannon Des Roches Rosa Senior Editor, TPGA [Content note: This article discusses suicidality and ableism] The 2019 International Meeting for Autism Research in Montreal begins today, so let’s discuss how autism conferences can best help the autistic people without whom autism conferences would not exist—based on how past autism conferences have gone, what can improve, and why participatory research (involving autistic people themselves) needs to be prioritized. Last year’s INSAR 2018 conference gave me some hope for the future of autism research. I’d never before seen anything like the slide below at any INSAR conference, not since I first started attending INSAR in 2011 (when it was still “IMFAR”). This Autistica slide, with the the motto of “Long, happy, healthy lives for all autistic people” encapsulates everything I want from INSAR presenters, and autism research: Photo: Sara Luterman [image: Projected slide showing a group of human faces in profile, facing…

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AutINSAR Twitter Chat 2019: What Autistic People Need From Autism Research

What do autistic people need from autism research? What is current autism research doing right? How does research let autistic people and their families down, and why? And how can we convey these concerns to autism researchers? That is what #AutINSAR is all about: a conversation between autism researchers and autistic community members, both in person and on Twitter. We had fantastic conversations at IMFAR 2017 in San Francisco, and again at INSAR 2018 in Rotterdam, and are hoping for another fruitful discussion this year during INSAR 2019 in Montreal, Canada. AutINSAR will once again be a partnership between us and The Autistic Self Advocacy Network (ASAN), NOS Magazine, Autism Women and Nonbinary Network (AWN Network), AutChat, and We Are Like Your Child. We welcome new 2019 partners Flow Observatorium and Autistics 4 Autistics Ontario. #AutINSAR Partner Orgs: ASAN, AWN Network, NOS Magazine, TPGA,  autchat, Flow Observatorium, and Autistic 4 Autistics…

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On Autism and Social Camouflaging: An Interview With Lily Levy

Lily Levy at INSAR 2018 [image: Lily Levy, a white British woman, presenting a poster at an autism conference.] INSAR 2019, the International Meeting For Autism Research, starts in three days. Before we begin our coverage, we’d like to emphasize research and themes from last year’s conference INSAR 2018, in Rotterdam—so we can proceed with a grounded sense of how the two conference’s priorities compare and contrast, especially in terms of research that affects autistic people’s quality of life (QoL). A consistent QoL theme of INSAR 2018 was autistic camouflaging, also known as “masking” or “passing.” We spoke with Lily Levy, who led the INSAR 2018 presentation For Better or for Worse? Social Camouflaging, Mental Health and Wellbeing in Autistic Adults.  Content note: Discussion of suidicality, bullying, and trauma. Shannon Rosa of TPGA: I’m at INSAR 2018 with Lily Levy, whose group presented the poster on Social Camouflaging, Mental Health and Wellbeing…

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Are Co-occurring Conditions Part of Autism?

Photo © NASA Goddard Space Flight Center | Flickr / Creative Commons [image: Photo of two neutron stars ripping each other apart.] Maxfield Sparrow unstrangemind.com Sometimes when I’m talking with someone about autism it feels like we’re talking about two different things. For example, I’ve had countless conversations that go something like this: “You’re nothing like my child. My child has the serious kind of autism,” they might open with.  “Autism is serious stuff,” I respond. “It’s important to take it seriously.”  “No, I mean my child has the autism with digestive stuff and physical involvement. The severe autism.”  “I have intermittent gastroparesis that has sent me to the hospital multiple times. I have a connective tissue disorder that has caused pelvic organ prolapse. These things aren’t autism.” And it’s the truth: the co-occurring conditions we cope with are not autism; they are the “genetic hitchhikers” that love to travel…

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Autism and Psychiatric Medication: Caution Advised

Photo © RoseFireRising | Flickr / Creative Commons [image: Mandala made out of different colored and shaped pills, on a dark blue background.] Kit Mead kpagination.wordpress.com [Note: This post discusses anxiety, medications, and chemical restraints. It is meant to caution against overmedication and about risk factors in medication for autistic people, with the understanding that many autistic people rely on psychiatric medication for their health and well-being.] I would need more than two hands to count the psych meds I’ve been given. There are enough that I don’t remember all of them; it started in the first grade. Some were just regular ADHD meds—which I needed—not psychotropic. As years passed, others were anti-anxiety SSRIs, and then antipsychotics; many well before I’d hit the end of middle school (these include Risperdal, Paxil, and Wellbutrin). While I was not diagnosed autistic until I was 14 or 15, the logic under which these…

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INSAR 2018: Autism and Suicidality Special Interest Group (SIG)

Sarah Cassidy’s INSAR 2018 SIG on autism and suicidality brought ~60 autistic people and autism researchers and professionals to discuss research on, and factors underlying and mitigating, suicidality in autistic people—as well as next steps for researchers. The statements and images below are from our original Twitter Moment compilation/report on this SIG. We then heard back that Twitter feeds can be difficult to parse and access for some, so we’ve created this version as well, edited for readability. Uncredited statements are from the Thinking Person’s Guide to Autism Twitter feed. —- Jon Spiers: Morning session on suicide and autism starting now at INSAR 2018 – a top priority for Autistica and Mental Health in Autism. At INSAR 2014, Sarah Cassidy was the only poster on suicidality. Now there is an entire INSAR 2018 track on autism, suicidality, and bullying. At IMFAR (INSAR) 2016, the SIG goal was to identify priority topic areas.…

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#AutINSAR 2018: What Do Autistic People Want from Autism Research?

Some of the onsite #AutINSAR participants, left to right: Jon Adams, Sara Luterman, Donna Bish, Andrew Colombo-Dougovito, Lily Levy, Laura Crane, Mel Bovis, Carol Greenburg, Georgina Perez Liz, and Shannon Rosa. Not pictured: Jelle van Dijk Photo by Josie Blagrave.  [Image description: Neurodiverse adults smiling and posing together] The #AutINSAR chat was an in-person and online Twitter discussion about autism research priorities, with the conversation taking place directly between autistic and/or autism researchers on May 11, 2018, at #INSAR2018, the International Society for Autism Research conference in Rotterdam, Netherlands. Many thanks to participants, and partners NOS Magazine, Autistic Self Advocacy Network, Autistic Women and Nonbinary Network, autchat, and We Are Like Your Child. We discussed the following questions: Q1: What should be the top three priorities for autism research?  Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?  Q3: What kind of technology research do you think would most improve #ActuallyAutistic…

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Encountering the Limits of My Professional Autism “Expertise”

Anonymous Photo © Carissa Rogers | Flickr/Creative Commons [image: Adult and two children, silhouetted against a lake and colorful pink sunset.] I started working with autistic children in the mid-nineties, as a volunteer in a magnet school. The experience was influential, and I went on to become a psychologist, getting a PhD focused on autism research. Since then I’ve been working in academia for almost a decade, and have published numerous papers reporting on novel autism studies. I’ve built a reputation in my sub-field within autism research and am, I’d like to think, fairly well-regarded professionally. All of this was established well before I had children. Earlier this year, following about a 12-month process plus a longer period of discussion between myself and my partner, my daughter Penny was diagnosed with autism. In many ways nothing has changed—Penny is still Penny, my work is my work. In other ways, of…