Thread by @thinkingautism

Getting ready to listen to Bryna Siegel on @KQEDForum, re: autism & the new prevalence rate.

Fun fact: I had lunch with Dr. Siegel & two autistic friends a few years ago. She talked about some of her theories for her new book. They both told her she was wrong. She ignored them.

@KQEDForum So even though Dr. Siegel has had “more than 40 years of clinical experience” with autism, if she ignores autistic insights, her opinion on autism is flawed.

@KQEDForum “Diagnosing for dollars” is absurd. We know from research that, if anything, #autism is under diagnosed, especially in girls, people of color, kids from low SES scenarios. Yes, there is always a small % of diagnostic error, but that is a dangerous misdirection.

@KQEDForum Dr. Siegel is misrepresenting what inclusion means. It does NOT mean sticking #autistic kids in regular classrooms with no support. It means ensuring that they are included in their peers' educational community, however that works. Research is clear that inclusion is valuable.

@KQEDForum Dr. Siegel is belittling campaigns that spread awareness of autism traits like auditory sensitivity. As if it’s not useful to have concerns screened.

What a horrible, harmful person—who has no problem using the R-word on a public radio station BTW. My God.

@KQEDForum No, Krasny, #autistic people don’t “live in their own world.” They live in the same world as everyone else, with a different and generally misunderstood experience. Non-autistic people need to work harder to understand and support autistic people’s experiences and abilities.

@KQEDForum It is really, really harmful to describe #autistic people as being a younger mental age than their legit age. My son is 18, with commensurate life experience. He has intellectual and communication disability. He needs tailored curriculum, not kindergarten curriculum.

@KQEDForum Krasny seems to not entirely refute the vaccine-autism connection (!). Thankfully Siegel is at least pushing back on that nonsense. Vaccines have nothing to do with autism, research is really clear on this. Also mercury poisoning and #autism traits have very little overlap.

@KQEDForum When it comes to genetic inheritance & autism, this area is indeed under-researched—we know anecdotally that many many families find autistic families members in the tree after their kids are diagnosed. And in many cases, those epiphanies are welcome and explain so much.

@KQEDForum It is arrogant of Dr. Siegel to dismiss this comment as "politically correct." We track the research, work with the researchers, and attend @AutismINSAR annuall. It is much more likely that Siegel is out of the loop with current information.

@KQEDForum @AutismINSAR Also, it is never too late to teach communication skills to autistic people, and the focus on expressive language can be harmful. The real issue it that we don’t understand/support autistic communication diversity, as I wrote @spectrum: spectrumnews.org/opinion/viewpo…

@KQEDForum @AutismINSAR @Spectrum How about instead of fearing disability/autism we help parents understand that disability and autism have always been here (per @stevesilberman’s #NeuroTribes) and we prepare parents better for supporting #autistic kids of varying abilities? Please? Doom-and-gloom helps no one.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman Yes, medications are overprescribed for autistic people, especially as chemical restraints (see @audreyqq’s AfterEffect podcast for chilling details). However the real issue is that autistic traits are often misunderstood, especially distress, and medicated instead of supported.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq OK, @KQEDForum, Siegel is the worst. The absolute worst. Autistic communities are a thing, like empathy, sensory, processing. My son’s life would be a very different and much poorer experience had we not listened to autistic experiences. To dismiss the “high functioning” is bunk.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq Correction: Autistic “commonalities.” I am mistyping because I am so angry about the sheer volume and diversity of dangerous and outdated misinformation (misquoting studies etc.) that Siegel is being allowed to share on @KQEDforum.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq Here’s the thing about ABA. Autistic people have been really really clear that it is traumatizing. Again, #NeuroTribes goes into the history of Lovaas (Siegel’s mentor btw, that should have been mentioned). Parents like it bc it promised a “real child” instead of an autistic 1.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq Stopped clock being right twice a day: Siegel is right in that we need to focus on, and support, #autistic people’s happiness and interests and abilities.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq Removing Asperger’s from the DSM may have irritated Siegel, but what many don’t know is that #ActuallyAutistic people were in the DSM working group that brought about the autism diagnosis consolidation. I think their opinion on autism traits & experience matters more than hers.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq There is an entire chapter of @SteveSilberman’s #NeuroTribes about my high-support non-speaking #autistic son, and my experience as a mom supporting him, and how much #ActuallyAutistic mentors have meant to us. What an arrogant, ignorant, dismissive person.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq Anyhow, @KQEDForum, thank you for including some of my comments, as well as those of @ejwillingham & @stevesilberman. Please take @JHMarble & @EricMGarcia up o their offers to help you find & vet useful autism media resources.

@KQEDForum @AutismINSAR @Spectrum @stevesilberman @audreyqq @ejwillingham @JHMarble @EricMGarcia I also wrote about some of the problems with media coverage of autism for @ESTBLSHMNT: medium.com/the-establishm…