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Autism and Self-Injury: Talking With Dr. Rachel Moseley at INSAR 2019

Dr. Rachel Moseley and Carol Greenburg [image: Photos of two smiling white women wearing glasses posing together. Left, Rachel Moseley has shoulder-length light brown hair. Right, Carol Greenburg’s hair is in a platinum bob.] Content note: This interview discusses self-injury and suicidal behavior. Oftentimes the most rewarding findings at INSAR, the annual meeting for the International Society for Autism Research, emerge during the pre-conference sessions. We went to the 2019 pre-conference on autism and mental health and were impressed by Dr. Rachel Moseley’s presentation on self-injury in autistic people without intellectual disability—and are grateful that Dr. Moseley was able to make time to talk with TPGA editors Carol Greenburg and Shannon Rosa about her research. Shannon Rosa: Dr. Moseley, can you first tell us a little bit about yourself, and your background and affiliations? Dr. Moseley: I’m a researcher at Bournemouth University. I did all my studying and my PhD…

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Autism And The Gut Microbiome: An Interview With Dr. Ruth Ann Luna

Dr. Ruth Ann Luna and Shannon Rosa. Photo © TPGA [image: A Latina woman with long dark brown hair, and a white woman with chin-length fluffy red hair and glasses, smiling and posing together.] Our editors Carol Greenburg and Shannon Rosa spoke with Dr. Ruth Ann Luna about her research on autistic kids and their incredibly diverse gut microbiomes during INSAR 2019, How her research is not about “special diets for autism,” how GI issues are co-occurring conditions and not a core trait of autism, how there’s no one universal single bacteria that is associated with autism, how GI profiles are ofter family- rather than neurotype-specific, and how this research may translate into real world supports for autistic people. —- Shannon Rosa: Thank you so much for being here. Can you tell us a little bit about your background and what brought you into this area of autism and gut microbiome research?…

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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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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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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…