jessphoto1-7694247

Grieving While Autistic

Jess Hudgins sawfishladyblog.wordpress.com Content note: This essay discusses death, disordered eating, and suicidality. The Beginning  On January 11th 2021, at 10:20pm, my father died. My heightened sensitivity to sensory input decided to record all of it, so very many things I don’t want to remember. The smell of sanitized plastic, the warmth of his skin against my cheek fading away, the way I held on to him until hospital security dragged me out screaming.  I would like to draw you a picture of that day. I would like to explain in the vivid details that for better or worse I can’t forget. I would like to tell you exactly what it feels like to have someone call a time of death for your father who can’t possibly be dead, except he is. Instead I’ll describe the bright white light of the moon that was streaming into my bed room the…

ahi9ot7frdcspsfiw74jqq-2138481

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…

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…

lilylevy-8271910

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…

8543759703_0a5bcb5972-6766405

When Autistic People Have Epilepsy

Photo © Ivo Dimitrov | Flickr / Creative Commons [image: Illustration of a human brain, in profile, made of colorful cogs in various sizes and shapes.] Maxfield Sparrow unstrangemind.com [Content note: This post discusses suicidality, mental health, and death.] In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure. I can’t know what it is like to have epilepsy or…

dc-rq-ox4aaidil-9942991

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.…

3987097743_0fe9019bd7_n-8668880

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…

15155593064_5893793be2_n-4199946

The Effects of Stigmatizing Language on Suicidal Autistics

M. Kelter theinvisiblestrings.com Photo by Boudewijn Berends, used under a Creative Commons license [image: head and shoulders of a person wearing glasses backlit by partially-lighted fog and clouds.] When it comes to online discussions about autism issues, I regularly interact with two realms. The first realm is one we’re all familiar with: the day-to-day articles and conversations and debates that take place regarding a wide range of spectrum issues. Causation, research, personal stories, opinions … just the usual autism topics that you come across as you scroll around blogs, and Twitter, and Facebook. The second realm consists of an invisible community. It’s made up of people who are absorbing every discussion, every debate, every article … yet they are not participating, not sharing their own ideas. They’re just there, quietly and attentively taking it all in. This second group is made up of suicidal autistics. This is not just an…