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The Problem With Autistic Communication Is Non-Autistic People: A Conversation With Dr. Catherine Crompton

Dr. Catherine Crompton is doing ground-breaking research on autistic social dynamics and communication, so we were thrilled to interview Dr. Crompton about her work on Information Transfer between Autistic and Neurotypical People during INSAR 2019. We were fascinated (and gratified) to learn about her findings that when there are communication disconnects between the two groups, it tends to be a mutual hiccup rather than an autistic-specific problem. Shannon Rosa of Thinking Person’s Guide to Autism (TPGA): I’m speaking with Dr. Catherine Crompton from the University of Edinburgh. Catherine is working on a project that examines whether performance on cultural transmission tasks varies, depending on the diagnostic status of the social partner, which basically, if you want to summarize that in layman’s terms? Dr. Crompton: It means that we’re looking at how autistic people interact with other people, whether that is different, depending on whether the person they’re interacting with is also…

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Parenting Kids With Disabilities: How to Get Through Tough Times

Shannon Des Roches Rosa www.squidalicious.com Content note: This article discusses abuse and murder. Photo © Steve Silberman [image: a white woman, standing behind a white teen boy with brown curly short hair. He is looking at the camera. Her arms are over his shoulder, his arms are up and tickling under her chin.] When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children’s fault. We need to handle their privacy with delicacy. And we shouldn’t accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity. But we do need to talk, because our parenting gig is not like other parenting gigs.…

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Autism Is Not “Behavioral”

Cal Montgomery Photo © Teresa Alexander-Arab | Flickr / Creative Commons [Image: A green buoy on the surface of a body of water on a sunny day.] Autism is not behavioral. Atypical behavior is not autism. It is a consequence of autism. It is surface markers by which what is underneath may be suspected, diagnosed, and investigated. Altering behavior doesn’t alter autism. Everything we recognize has surface markers. Fear, for instance, may look like a cold sweat, breathing hard, and dilated pupils, but that is not what fear is. ABA, the most popular monopoly for interacting with autistics, denies the “underneath.” It says that the surface markers are all that matter. It is profoundly dehumanizing. It is also a worldview that is almost impossible to maintain. When you call autism a behavioral disorder—and I am not touching the “disorder” part right here but I also do not accept it—you are focusing…

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INSAR 2019: Yet Useful Research and Autistic Representation Persisted

Shannon Rosa Senior Editor The TPGA team attends INSAR, the annual meeting of the International Society for Autism Research, annually and has done so for eight years. We participate as journalists covering important autism research for our community, and also from our combined personal investments as parents of high-support autistic teens, autistic self-advocates, and autism professionals.  I found INSAR 2019 to be the most progressive annual INSAR meeting since I first started attending in 2011, going by TPGA’s priorities of spotlighting research addressing the health and well being of existing autistic people, centering improved autistic quality of life as an optimal outcome, and increasing and acknowledging participation of autistic people themselves. I also appreciate seeing an increasing emphasis on autistic people and their families’ day-to-day under-recognized concerns, including co-occurring conditions like GI issues and sleep disturbances, practical considerations of transitions to adulthood, suicidality and other mental health matters, physical activity,…

INSAR 2019: Gender, Sexuality, and Romantic Relationships

Today’s INSAR 2019 Special Interest Group (SIG) on Gender, Sexuality, and Romantic Relationships was led by Laura Graham Holmes and Jeroen Dewinter, and co-led by Anna van der Miesen. Essentially, relationships and sexuality are central to everyone’s health and well-being. But there isn’t enough useful research and materials available fo autistic people of all ages and abilities, their families, and healthcare professionals, and many have expressed the need for research and guidance. So that’s what the SIG leaders and the participants in this well-attended session talked about. Any errors or omissions in the highlights below are on us. SIG participants Sara L, Dori Z, Jac dH, and Christina N, in discussion [image: Four people of varying gender identities and neurotypes, talking at a conference table.] Last year’s Gender, Sexuality, and Romantic Relationships INSAR SIG was about determining the most important issues for the autistic community, in terms of gender and…

INSAR 2019: Learning How to Prevent Suicide in Partnership with Autistic People and Their Allies

Yesterday we attended the INSAR 2019 panel Where Do We Go from Here? Learning How to Prevent Suicide in Partnership with Autistic People and Their Allies, led by Sarah Cassidy from Nottingham University who has been doing this for four years now. Here is what the speakers had to say. (Any errors or omissions are on us.) The most important panel of the #INSAR2019 conference, chaired by @Sarah_NottsUni who is leading innovative and potentially life-saving research to understand and help prevent suicide in autistic people. pic.twitter.com/oSoQetMQI5 — Alexandra Forshaw (@myautisticdance) May 3, 2019 More than 10K stakeholders worldwide have identified the top 10 priorities, with equal representation of #autistic people: What increased barriers do autistic people experience when seeking help which may put them at greater risk of dying by suicide? What are the risk and protective factors for suicide in autism across the lifespan? To what extent are autistic people…

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INSAR 2019: #Autism and Related Disorders in the Context of Humanitarian Emergencies

Shannon Rosa Senior Editor [Note: This report is based on @thinkingautism live-tweeted coverage, and as such may contain errors or omissions.] Report from the INSAR 2019 Special Interest Group (SIG) Autism and Related Disorders in the Context of Humanitarian Emergencies. SIG summary: “UN figures estimate 48 million children are impacted by humanitarian emergencies, including armed conflict and natural disasters. Within this population, children with autism and developmental disorders are extremely vulnerable to poor short and long term outcomes. There is increased awareness of the vulnerability of these children but limited research based knowledge on how to best address their needs. We aim to launch a platform for communication and collaboration between autism researchers and key stake holders in the humanitarian setting to address this gap.” First up was Doctors without Borders and SIG leader Ramzi Nasir, a developmental pediatrician who worked in conflict zones. He asked: Can we use remote consultations…

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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…