Jenny Mai Phan is an Asian American autistic autism researcher, an Interagency Autism Coordinating Committee (IACC) member, and the mother of four children, two of whom are autistic.
Parents should tell their children they are autistic in ways that help them understand and feel good about who they are.
Our senior editor Shannon Rosa was invited to participate in the 2021 UC Davis Neurodiversity Summit, on a panel debating the role of the Neurodiversity Movement in supporting and including autistic people with intellectual and communication disabilities.
“I have no doubt that the individual researchers I have encountered are well-meaning and sincere in their desire to positively impact the world. However, there appears to be a total lack of awareness of current reproductive medicine practices’ bias against neurodivergent people, never mind the implications.”
What if the headlines had read, “Autism doesn’t have to be a problem if children are understood and supported”?
For the most part, autistic people and our families do not want funds to be used on genetic research, and would prefer them to be used to focus on services and societal interventions that can impact the wellbeing, quality of life, and mental health of autistic people across the lifespan.
Photo © Thomas Haynie | Flickr / Creative Commons [image: Scrabble tiles spelling out the word “Research.”] Ann Memmott annsautism.blogspot.com I wondered whether a recent major international autism conference had discussed ethics as a topic this year. I found one discussion. Well, that’s better than none, for a three day conference about our lives. Here’s part of that research team’s paper. It’s called “Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature” and was written in 2021 by Bottema-Beutel, and Crowley for a journal called Frontiers in Psychology. “Result: Of the 180 studies that met inclusion criteria, we found that 84% had at least one author with …a conflict of interest, but that they were disclosed as conflicts of interest in only 2% of studies…Five of the eight journals we examined had policies requiring disclose of conflicts of interest related to employment; clear violations were evidence in four of…
AutINSAR is a conversation between autistic people and/or autism researchers about needed autism research directions, priorities, oversights, course corrections, and goals.
“When an academic writes accurately about aspects of autistic lived experience in their research, some people grumble. “All they needed to do was ask me and I would have told them,” some will say.”