The term ‘profound autism’ is not particularly useful, as “many autistic people who do not have the characteristics the authors focus on have significant support needs, and support needs can be radically different across different domains, social contexts, and time.”
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.
“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.
Non-autistic people harbor assumptions about autistic people, whether they’re aware of them or not. And those biases can get in the way of autistic people being included both socially and professionally. We talked with Desi Jones, a Doctoral Student at the University of Texas at Dallas, whose recent paper Effects of autism acceptance training on explicit and implicit biases toward autism examines how autistic acceptance efforts both succeed and fail in addressing stereotypes about autism, and what this means. We also discussed her work on structural racism in autism research, and how institutions can do better by their autism researchers of color—and why that doesn’t merely mean recruiting more POC. Photo courtesy Desi Jones [image: Desi Jones, a smiling Black woman with curly shoulder length purple-tinged hair.] TPGA: Can you tell us about your background, and what drew you to autism research? Desi Jones: I double majored in Neuroscience and Psychology…
When we are far more willing to believe in the capacity for communication of animals and aliens than we are in that of nonspeaking and intellectually disabled autistic people, and extend our research and creativity towards mutual understanding, no, I have to reject the assertion that “Some autistic people just can’t communicate.”
Conflicts of Interest in Early Autism Intervention Research: A Conversation with Dr. Kristen Bottema-Beutel
Photo courtesy Dr. Bottema-Beutel [image: Formal photo of Dr. Bottema-Beutel, a smiling white woman with medium-length side parted brown hair.] Advocates of early autism interventions often claim such approaches are “evidence based,” whereas critics have long pointed out individual flaws in cited studies. We were glad to learn about Dr. Kristen Bottema-Beutel’s analysis of general conflicts of interest in early autism research, and talk with her about how her findings complicate assertions about being early autism interventions being evidence based, and what else she and her team discovered. —- Thinking Person’s Guide to Autism: Can you tell us why you decided to pursue this analysis of conflicts of interest (COIs) in early autism intervention research? Bottema-Beutel: The short answer is that I’ve been following Michelle Dawson on Twitter (her handle is @autismcrisis). Michelle is an autistic researcher who has been sounding the alarm on undisclosed COIs for more than a decade—before I…
Ann Memmott annsautism.blogspot.com In the recent Lancet article The gut microbiome in neurological disorders by Cryan et al, confused researchers have mistaken reducing stomach pain for curing autism (yet again). Now, autism researchers, when was the last time you had a hurty tum? How was your behaviour? Having an ‘aha!’ moment now? Thank you. If you want a hint of the joys within the Lancet paper: it references Tomova et al’s 2015 paper Gastrointestinal microbiota in children with autism in Slovakia, which involves nine autistic children ages 2-9, in an unblinded study (meaning they knew which kids got the probiotic supplement) and parent reports of “behaviour.” Apparently after the treatment autistic children showed less “challenging behaviour” which led to the the supposition that “…appropriate… microbiota is required for normal social development.” The problem is that autism isn’t a behaviour, any more than being Deaf is a “behaviour.” The cited quest to…