Monday, February 26, 2024

Changing Perceptions of Autism

I compiled some posts from here into a summary of recent studies on Autism at 3 Quarks Daily, but the word count limit there forced me to cut this bit on the history of our understanding of autism:

1908 - "The term ‘autistic’ was used to classify schizophrenic patients who were “severely withdrawn,” setting a trend to diagnose ASD as 'childhood schizophrenia' until the 1940s.
1924 - Grunya Sukhareva published reports on children she described as having “schizoid psychopathy.” Despite the name, her theory is very similar to how autism is described today.
1938 - Hans Asperger received funding from the Nazi party to research children to determine which are more worthy of life. He noticed that some children were very cognitively advanced despite isolating socially, which he named Asperger's Syndrome.

1943 - Leo Kanner noticed differences between schizophrenic patients and this group of symptoms that he named ‘Kanner Syndrome'. He started the "refrigerator mother" theory to align with the pervasive Freudian belief at the time that psychological disorders are caused by childhood trauma. Interestingly, "Kanner’s own research classified very few parents as ‘cold’, meaning that this theory was not only wrong, it was obviously wrong," and in Kanner's original paper, he specifically referred to autism as an innate disorder.
1964 - Bernard Rimland wrote Infantile Autism, and argued that autism was not the result of emotional neglect, but due to neurological and genetic issues from birth, and physicians started to treat ASD using methods more similar to those used with other biologically-based disabilities.
1965 - Ivan Lovaas published articles on using "errorless learning" to teach nonverbal children to speak, which included the use of punishers like electric shocks and withholding food. This was the precursor to ABA (applied behavioural analysis) therapy.
1967 - Bruno Bettelheim wrote The Empty Fortress, which expanded on Kanner's notion of the cold-hearted mother as the singular cause of ASD in which he compared being autistic to living in a concentration camp. From Autism Help

 "Some authority was granted to this as well because Bettelheim had himself been interned at the Dachau concentration camp during World War II. The book was immensely popular and Bettelheim became a leading public figure on Autism until his death, when it was revealed that Bettelheim plagiarized others' work and falsified his credentials. Also, three ex-patients questioned his work, characterizing him as a cruel tyrant."

1974 - Lovaas conducted conversion therapy experiments on a possible trans girl, and he gave this interview in which he said, 

"You start pretty much from scratch when you work with an autistic child. You have a person in the physical sense--they have hair, a nose, and a mouth--but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. . . . She hit herself again, and I really laid it on her. You see, by then I knew that she could inhibit it, and that she would inhibit it if she knew I would hit her. So I let her know that there was no question in my mind that I was going to kill her if she hit herself once more."
1980 - Autism was added to the DSM-III under Pervasive Developmental Disorders (PDD), which was a new class of conditions. The addition was largely due to Kanner's work.
1981 - Lorna Wing and Judith Gould diagnosed a variety of children in psychiatric hospitals and noticed the variety of behaviours being lumped under one term. They came up with the spectrum theory of autism, divided into four main types: classic autism, Heller's Syndrome, Asperger's Syndrome, and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). They also translated Asperger's work into English, and it subsequently became more known in North America.
1987 - Lovaas developed ABA or EIBI (early intensive behavioural intervention) with a heavy emphasis on eye contact and language. The punishers of the 60s were replaced with loud noises or a slap to the thigh.
1990s - Larger studies were conducted beyond psychiatric institutions, on kids in mainstream schools, and the prevalence rate increased seven times, from 0.1% to 0.7%, or from 1 in 1,000 to 1 in every 140 kids.
1994 - The DSM-IV used Wing & Gould's four categories, dividing autism into different categories.
1996 - Judy Singer coined the term "neurodiversity" to emphasize that many people on the spectrum are different rather than being something in need of fixing.
2004 - Studies identified over 100 genes related to autism, with no difference between the four types, so anyone with autism could have any combination of these genes. More recently, they found 185 specific genes. So saying there are different types of autism is true like there are different races: it's true practically speaking, but it's not biologically true. Autistic traits, like racial traits, are from many different genetic combinations.
2005 - Autism Speaks was founded to find a cure to end autism with a "Light It Up Blue" campaign.
2013 - Because of the genetics findings, the DSM-5 amalgamated all types of autism diagnoses into ASD (Autism Spectrum Disorder) with three levels based on how much assistance the person needs with daily functioning.

2015 - Alanna Rose Whitney started #WalkInRed or #RedInstead as an alternative to #LightItUpBlue, and Steve Silberman wrote NeuroTribes 

"Instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present. . . . Imagine if society had . . . denied wheelchair users access to public buildings while insisting that some day, with the help of science, everyone will be able to walk. Viewed as a form of disability that is relatively common rather than as a baffling enigma, autism is not so baffling after all. Designing appropriate forms of support and accommodation is not beyond our capabilities as a society . . . but first we have to learn to think more intelligently about people who think differently."

2019 - A meta-analysis of early interventions for ASD found that developmental approaches (intentional support in natural development) and Naturalistic Developmental Behaviour Interventions (NDBI) (teaching skills as part of the natural environment) both show far better effects than behavioural (rewards/punishment) approaches like ABA. However, from what I've seen anecdotally, current ABA practices are much closer to NDBI than anything resembling the original horrific ABA practices, but that's a controversy for another day.

On a lighter note, comedians are currently some of the best resources for what it's like to live with autism. Here's Fern Brady on using a different operating system (2 min. video), and Hannah Gadsby on being level one (7 min. video) and on being wired differently (18 min. video). Love on the Spectrum shows a wide variety of real people with ASD trying to find love. Finally, a few people have written "diagnoses" of Neurotypical behaviours (NPTD) to show people what pathologizing behaviours look like here, here, and here. And check out 9 Signs You're Probably Not Autistic.

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