Tag: research

lilylevy-8271910
Disability

On Autism and Social Camouflaging: An Interview With Lily Levy

Posted on by

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…

13991417699_444a06c884-4437736
Disability

Are Co-occurring Conditions Part of Autism?

Posted on by

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…

4220757244_c4af2f2261-9630431
Disability

Autism and Psychiatric Medication: Caution Advised

Posted on by

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…

dc-rq-ox4aaidil-9942991
Disability

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

Posted on by

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.…

img_4423-1576316
Disability

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

Posted on by

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…

3924163886_7bc4e163b6_b-2083106
Disability

Encountering the Limits of My Professional Autism “Expertise”

Posted on by

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…

img_1913-1555058
Disability

IMFAR: Now With More Autistic Priorities! TPGA’s 2017 Conference Report

Posted on by

Shannon Des Roches Rosa  Senior Editor, TPGA Welcome to IMFAR 2017! [image: three white autistic folks: Corina Becker, Steven Kapp, & Carol Greenburg, posing by the “Welcome to IMFAR 2017” sign.] We have been reporting from IMFAR, the annual International Meeting for Autism Research, since 2011. This year we provided general live coverage via Twitter, with select roundups including the Press Conference, and highlights from sessions such as Autism and Aging, Understanding Barriers to Autism Diagnoses for Children from Racial/Ethnic Minority Groups in the U.S., Mental Health Crises in Autistic Youth, and Autism and Sexuality. We also co-hosted the #AutIMFAR chat with autistic and autism research community members. While the research presented at IMFAR continues to be varied in scope, and is still too disproportionately skewed towards prenatal, infant, and early childhood findings, our takeaway is that the 2017 meeting in San Francisco had the biggest increase in neurodiversity-oriented content and attendees we’ve seen so far.…

Disability

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

Posted on by

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:…