The History of Autism – Part 3/3

With scientists and society collectively wanting a cure for autism, several unfortunate attempts at “fixing” autistic children were made. In the beginning of the 21st, something called “Applied Behavioral Analysis” or ABA became a much more popular treatment for autistic children, but for the longest time, it did more harm than good. The “therapy” would involve children being taught how to act “non-autistic” through both positive and negative reinforcement (such as shouting, taking away toys, or even electric shock). By forcing children to mask and punishing their natural inclinations, it is estimated that around 50% of ABA autistic patients suffered PTSD as a result (Kupferstein).

Some newer versions of ABA involve more helpful and less traumatic approaches, such as teaching the child social skills in a way that is comfortable for them, and allowing them to express themselves in their normal, autistic way. However, there are still many clinics that have not adopted this new approach.

In response to ABA and the overall ignorance of mainstream society, autistics and their allies created the “Neurodiversity Movement,” an advocacy group attempting to normalize autism and disassemble misinformation. The group helps spread new research that suggests that autism is simply a “neurotype,” as I have described before. One of the main enemies of autism activists is an organization you have probably heard of: Autism Speaks.

Autism Speaks was founded in 2005 after one man’s grandchild had been diagnosed with autism. In response, he created an organization which would go on to fund a potential “cure” for autism, ineffective and abusive programs like ABA, and even research which sought to prove that vaccines cause ASD. They have also put out many advertisements over the years illustrating how autism is “plaguing our children” and makes autistic people out to be dangerous and psychopathic. If you don’t believe me, a simple Google search of “Autism Speaks ads” will show you what I am referring to. Here is one example:

 

Another thing autistic advocates have been trying to disassemble is the idea that there are “worse” or “better” types of autism, since most recent science on ASD has shown that genetically, and neurologically, there are no differences between those 4 categories of autism. Even though the evidence was clear enough that the DSM eventually combined all 4 autistic types into one, many people still use outdated and inaccurate terms such as “high functioning” and “Asperger’s,” as I have discussed before. These terms are not only incorrect, but come from a literal Nazi scientist, and frankly, anyone who chooses to identify themselves or their children with that man is an enigma to me.

Speaking of enigmas, my last point in my summary of autistic history will be about the puzzle piece, a symbol originally created to represent how autistic people are enigmas to neurotypical people, are usually children or child-like, and cannot fit into the puzzle that is the rest of society. That symbol was meant to make us seem like the puzzle piece that doesn’t quite fit, and with its colorful, childlike design, was also meant to infantilize us. Now that you are aware of the history of autism, perhaps you understand why it is important that autistics and neurotypicals both distance themselves from all of that ignorance and mistreatment we used to, and still do, experience. Instead of the puzzle piece, I urge you to use the infinity symbol, which represents the spectrum and infinite possibilities of those with ASD. For most people, it’s just a shape, but for those of us who are affected by the discrimination of the people who created that shape for us, it means so much more.

History Scope’s video:

http://https://www.youtube.com/watch?v=Zx62-79XXno

youtube.com/watch?v=Zx62-79XXno

https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/

Kupferstein’s study on the effects of ABA on autistic individuals:

https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html

The History of Autism – Part 2/3

For the longest time, autism was thought to be something quite rare, and thanks to Leo Kanner, many also thought it only affected children. In 1981, however, psychologist Lorna Wing went looking for support for her autistic daughter, quickly realizing that there were virtually no options available. She discovered that in order to get the government to fund assistance for autistic children, she must prove to the world that autism is actually much more common than previously thought. After reading about autistic traits as much as possible and having foreign works translated into English, Wing realized that autism was actually a spectrum, with every individual having different autistic traits to different degrees. Now labelling the condition as “Autism Spectrum Disorder,” Wing presented her findings to the scientific community who eventually decided to separate autism into 4 main categories: Classic Autism (those who have repetitive behavior and social difficulties), Heller’s Syndrome (those who’s autistic traits show up later than usual), Asperger Syndrome (those with social difficulties, nonverbal communication, and repetitive behaviors and interests), and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified….. basically, everyone else on the spectrum).

One main issue with all of the research that was done up until this point was that only children in psychiatric institutions were studied. In the 90s, a study in the UK finally looked at other children attending mainstream schools, now finding that around 0.71% (not 0.1% as previously believed) of children were most likely on the spectrum. Knowing that autism was actually somewhat common, society and the scientific community became increasingly aware of the fact that autism was not a horrible disability, and in fact was just another way to be human. We will continue to discuss further research into the prevalence of autism, but here is a good visual demonstrating how the idea of autism being “rare” has changed over time. No, this does not mean that more and more autistic people are being born. As History Scope points out, “Pluto wasn’t discovered until 1930, but I’m pretty sure it was there the whole fucking time.” The same logic can be applied to autism. Just because many autistic people were not yet being diagnosed does not mean they did not exist.

One of the most offensive and inaccurate ideas to be spread during this time of emerging autistic research was the notion that autistic people had social differences due to a lack of empathy. In reality, autistic people on average actually might have more empathy than others, causing them to become overwhelmed. However, the truth about this would not be recognized for quite some time.

Once the media began discussing ASD in various way, this and many other incorrect stereotypes were further perpetuated. Some media portrayed autistic people as stupid, others as genius, some as childish, and many as simple nuisances to others, not to mention the crazy idea that only white men happen to be autistic. With society becoming convinced of the “tragedy” of autism, most people thought it would be best to look for a “cure.”

In my next entry, you will see the continuation of the history of autism as it makes many important transformations in the 21st century.

 

History Scope’s video:

youtube.com/watch?v=Zx62-79XXno

 

 

The History of Autism – Part 1/3

Considering how misunderstood and stigmatized it still is today, it probably will not surprise you to hear that the whole history of ASD is very unpleasant. However, our society has come a long way since the beginnings of what we now call “autism,” and the key to continuing this progress is being fully aware of the previous struggles and notions surrounding the community.

For this post I have done a lot of research, and everything I talk about can be found in one of the links I will provide. My favorite source comes from the YouTube video I have put below, and I highly suggest watching it if you are interested in learning more. Because of how much information there is on this topic, I will be writing a few entries about it, that way those who do not want to read a whole 1851-word blog entry don’t have to… lol.

So, the first time autism was officially identified was in 1908 in reference to patients with schizophrenia who were also very withdrawn, which continued to be the use of the term into the 1940s. It was basically believed that autistic people were actually schizophrenic because they did not seem interested in the outside world. This could definitely be seen as a similarity between the two conditions, but it took a while for scientists to find out that both had very different reasons for their social aversions.

However, autism was directly studied in 1924 by Grunya Sukhareva, a child psychologist who originally also believed that these autistic individuals must have something similar to schizophrenia, but went on later in her career to find a theory about ASD that is very similar to how scientists view the topic today. Her work, unfortunately, would not be looked at by anyone outside of the Soviet Union until 2013 when it was finally translated into English. Some speculate that the reason her work took so long to become recognized was also due to the fact that, as a woman, she would not be taken seriously until society was ready. As a result, progress in the autistic community would not yet come for many more decades.

Then, in the 1940s the Nazi regime, in order to decide who should or should not be allowed to reproduce and live in their eventual “perfect” human society, funded research that would help child psychologists essentially separate the “good” autistics from the “bad” autistics. One of these psychologists was Hans Asperger who was given the job of sending the “impure” children to be killed. Those who still seemed autistic yet were better at language and had a higher IQ were then given the term “autistic psychopathy,” which later transformed into “Asperger Syndrome.” This term did not become accepted in the scientific community, however, until the 1980s since much of the research funded by the Nazi government was ignored and buried.

As the first scientist in the Western World to study autism, Leo Kanner is another important researcher who would actually have his work reviewed and recognized by the scientific community in 1943. Coming to a similar conclusion as Asperger, he saw that autistic children were very distinct from those with schizophrenia, and he gave them the label of “Kanner Syndrome.” These children, he noted, were not interested in the rest of society, had certain repetitive movements, and would become overwhelmed easily. As he became more well-known throughout the world, many young patients would be sent to him to be studied and potentially diagnosed. Over many years, he discovered many other key symptoms of autism, such as strict routines, social difficulties, sensory problems, high IQ, and good memory. However, Kanner’s diagnostic criteria was so narrow that he predicted that around 1 in 1,000 people were autistic. In reality, the number is closer to 1 in 68, meaning that a lot of children would be misdiagnosed in his clinic. Additionally, he incorrectly concluded that autism was probably caused by something called “refrigerator moms,” a term that refers to “cold” parenting by the child’s mother. This idea would continue to be accepted by society and scientists until the 1960s.

This will be the end of my part 1 of ASD history. If you are interested in hearing more, don’t hesitate to take a look at my other 2  entries from today.

 

History Scope’s video:

http://https://www.youtube.com/watch?v=Zx62-79XXno

youtube.com/watch?v=Zx62-79XXno

ASD Passion Blog – Introduction

ASD, or Autism Spectrum Disorder, is a condition in which the brain of an affected individual is “wired” differently, leading to challenges in several areas of life. Communication, cognitive patterns, emotional processing, and personality traits are some examples of categories in which autistic people experience these differences, or as some might view them, “deficits.” However, as I will discuss in depth later, these “deficits” are only seen as such because they are the minority. In an opposite world where 99% of people have an autistic brain, I can promise that those with non-autistic brains would instead be seen as the ones with certain “deficits.” Basically, most experts nowadays see autism as simply a different type of brain, or neurotype, instead of a disorder. Thus, many advocates now call it Autism Spectrum Condition in an attempt to de-pathologize it.

Whatever you want to call it, autism is something that I have only recently come across with my own diagnosis. I mean, I had certainly heard of autism before, but my impression of the condition was beyond uneducated. Most of what I knew came from classmates and stereotypical autistic characters on TV, which, as I’m sure you can imagine, was not quite accurate.

Once I discovered I might be on the spectrum, I did what I usually do with new and mysterious information: research. I indulged in YouTube videos, scientific publications, and personal blog posts on ASD, all of which opened me up to the controversial and fascinating world of autism. I knew my previous ideas about the topic might be outdated, but what surprised me was how outdated and ignorant much of the media still was.

I expected most of the information I found on ASD to follow a similar pattern I discovered growing up with other topics. For instance, homophobia was something popular and widespread in my hometown, but I found quite the opposite in most places online. With autism, however, the ignorance surrounding autism in real life seemed unfortunately much more prevalent online as well, which I will discuss further in several posts.

Now, truly understanding the lack of awareness and acceptance of people with ASD, I want my passion blog for this semester to focus on those exact issues. I will be discussing information about ASD in general, exploring the experiences of specific people with ASD, and especially addressing controversies about the condition. While I know that only a handful of people may read this blog, it still motivates me to know that even one person will learn from my work and use it to continue the progress of autism acceptance.