This video is part of a larger presentation given by Tessa Watkins called “Unmasking Autism” for Dan Miller’s Mental Health & Disability Summit. The original presentation was given in-person in front of a live audience on May 23, 2022. Unfortunately, it was not recorded during the event so Tessa decided to record parts of it at home on May 3, 2023, so the information could be available to everyone.
Video Transcription
It was only 115 years ago when Swiss Psychiatrist and Eugenicist, Paul Eugene Bleuler, first coined the word “Autism” to describe a subset of his long-term psychiatric patients that seemed to be disconnected from the world and preferred their own company. I guess you could say autistic people are just highly introverted schizophrenics.
Funny story, I actually remember when I was 14, I was at the school library looking up the definition of “schizoid personality disorder” and thought I might be one because I checked every single one of those boxes. I never pursued a diagnosis then because I was a kid and didn’t have any adults in my life that would take this kind of suggestion seriously. They’d fob me off saying I’m too young or that I don’t “look” like I would be. And because I was a kid and already trained to be a people pleaser, I took their word for it and that was the end of that.
[click] It was only 80 years ago that child psychiatrist, Leo Kanner, studied autistic children, particularly focusing on those that exhibit “classic autism” which are the autistics that would be comorbid with an intellectual disability. His focus was trying to make these children behave like same-aged peers.
[click] 79 years ago, the more famous psychiatrist and eugenicist, Hans Asperger, worked separately from Kanner, but instead he focused on those that were able to follow adult-led instruction and contribute to work because without him, all autistic children would have been sent to be forcibly sterilized or euthanized because he was working in Nazi-era Vienna. Once again, however, his focus was more about making these kids look indistinguishable from their peers so they could avoid the fate that awaited autistic kids during this time.
[click] Interestingly enough, his work was largely unknown until British psychiatrist Lorna Wing described it in English 42 years ago.
[click] It only started becoming popular after Asperger’s work was fully translated into English 32 years ago by German-British developmental psychologist Uta Frifth.
[click] Asperger’s Syndrome was officially added into the DMS-4 just 29 years ago but was removed when the DSM-5 came out 10 years ago. They removed it because clinicians applied the diagnostic criteria inconsistently, it was like nobody knew the difference between Asperger’s and Autism so they decided to make it the same.
[click] It was also removed when the ICD-11 came out 4 years ago, so at this point, Asperger’s Syndrome is not a clinical term anymore, however the U.S probably won’t adopt the new terminology for probably another decade.
[click] But before I get ahead of myself, I also want to mention that it was around 73 years ago that scientists started looking into the cause of autism, and the first theory to come out was the Refrigerator Mother theory from Holocaust survivor, con-artist, and child abuser, Bruno Bettelheim. This is important because Bettelheim’s theory was based on some of Kanner’s work that was misinterpreted. While Kanner mentioned that parents may have been cold, it was for the purpose that autism may have been hereditary since some of the mothers may have been expressing autistic hypoempathy. Instead, Bettleheim’s takeaway was that autism was the result of mothers who were cold and unemotional, thus denying their children of appropriate human connection.
[click] His theory was challenged by the Bernard Rimland, a psychologist and parent of an autistic kid, when he published his book 59 years ago and also by Kanner 54 years ago. At this point, the scientific community no longer believes this theory, however, this has sparked such an incredibly huge response from parents to the point where we now have the “Autism Mom” typecast, the mother of an autistic child who feels like they need to prove their love so much that they’ve taken on their child’s disability as their own identity. So we don’t talk about Bruno.
[click] 58 years ago, Dr. Ole Ivar Lovaas got into the game. Much like the previous white guys I mentioned, his research focused on making autistic children pretend they aren’t autistic by using fear and anxiety as motivators for his authoritarian approach. Lovaas specialized in self-mutilative children, especially the ones that didn’t respond to positive reinforcement and was one of the first to use electric shock treatment in addition to physical abuse to induce fear in the children who weren’t afraid of him. Lovaas’ work led him to founding the autism treatment called Applied Behavior Analysis which is still used today.
[click] 25 years ago, scientists started looking for causes of autism again, but this time they thought it might be the MMR vaccine. Now, numerous studies have debunked this, but the largest study that finally confirmed that there was no connection was published 8 years ago.
[click] While debunking that, it was 17 years ago that scientists started to think autism is caused by a neurological disorder that is influenced by both environmental and genetic factors. There’s actually a lot of organizations that are studying the genome trying to find the ‘tism so that they can develop either a gene therapy to remove it, essentially “curing” autism, or at least screen for autistic babies in the womb. An example is the partnership between Autism Speaks and Google with their MSSNG project.
The hard truth is that parents don’t want disabled children. Since Down’s Syndrome can be screened during pregnancy, 90% of pregnancies where the babies were diagnosed in Britain were terminated. That’s up to 98% in Denmark and almost 100% in Iceland. A study as recent as last month came out with results showing they can screen for autism using a fetal MRI, so it’s not from a lack of trying that we haven’t done it yet.
The point of this history lesson is to show you that the study of autism has been so focused on eradicating or “curing” us and it’s not ancient history, it’s still happening. Masking is something autistic people like myself learn to do because we can sense that the world does not want us. It never did.
References
- Dr. Ananya Mandal, MD, “Autism History” (Feb. 26, 2019). News-Medical. AZoNetwork.
- “Bruno Bettelheim” (Mar. 9, 2022). Encyclopedia Britannica.
- Sean Cohmer, “Early Infantile Autism and the Refrigerator Mother Theory (1943-1970)” (Aug. 19, 2014). The Embryo Project Encyclopedia.
- Jennifer LeGare, N.P., “Link between autism and vaccination debunked” (Mar. 24, 2022). Mayo Clinic.
- J.B. Barahona-Correa and Carlos N. Filipe, “A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis” (Jan. 26, 2016). Frontiers in Psychology. National Library of Medicine.
- Adam McCrimmon, “What happened to Asperger’s syndrome?” (Mar. 8, 2018). The Conversation US, Inc.
- Green summer background photo by Dmytro Tolokonov on Unsplash
