CW: This post discusses historical and contemporary medical treatments for autism and mental illness patients that range from unpleasant to downright abusive and may be triggering for some readers.
I confess, out of all the WtKM posts thus far, this one has benefited from the most research. It’s also been the hardest to write.
I started researching historical treatments for autism around 2016, for a book I’m currently querying. It was a difficult subject matter to research, no only because of the disturbing information I uncovered, but because the word autism didn’t even exist until 1911, and it didn’t come to define the condition we know today until the 1940s, making it nearly impossible to find accurate records.
But let me back up a little.
First of all, let’s start with the basics:
At heart, autism is a sensory processing and communication disorder. Autistic people are wired differently. Often things like loud noises, bright lights, or certain textures can be overwhelming. Additionally, they may have difficulty expressing themselves verbally, or understanding other people, especially when it comes to facial expressions and body language.
There are literally dozens of potential symptoms, and they all exist on a spectrum, which means every autistic person can have a symptom–say, difficulty recognizing faces or facial expressions–to a different degree. That symptom can also have a different severity level depending on the day, as it could be influenced by things like stress, sensory overload, how much sleep the person got the night before, or a million other little things that neurotypical (aka “normal”) people take for granted. Or, they might not have that symptom at all.
Some autistics are great at public speaking, are super gregarious, or are writers. Others are completely nonverbal.
[I know that most of my readers are neurotypical, so for the sake of this blog, I will be using the labels of “high functioning” and “low functioning” autism, though both of these are really misnomers. However, even in the autistic community I haven’t seen anyone agree on any kind of alternative terminology. I’m sorry if you find it offensive; as this is a blog and space is limited, I do have to simplify things somewhat.]
So, now that we have that covered, I’m going to give you a short list of myths about autism, dispel them, and then we can move on to the actual history.
- it is caused by genetics, not vaccines, though the exact genetic marker has yet to be identified.
- autism is not a mental illness, though it often has many comorbid conditions (which means someone with autism also frequently has anxiety, depression, or another condition).
- autism (or Autism Spectrum Disorders, ASD, according to the DSM-V) does not make a person inherently selfish, violent, or mean. Autistic people frequently have difficulty understanding social cues, reading facial expressions, or understanding a neurotypical person’s response to a situation, which can make them appear rude or unfeeling, but 98% of the time they don’t mean any harm and are just trying to understand a situation better.
- all autistics are not Sheldon Cooper. Some have super high IQs, others do not. Some are great at math and science, others are great at reading and language. They can have learning disabilities (remember those comorbid conditions?), average intelligence, or be geniuses.
Okay. Now for that history.
While the word autism wasn’t used until 1911, we do know that the condition itself likely existed for hundreds of years. A trained eye looking at records of historical figures can spot many people with so-called high functioning ASD traits. The fact of the matter is, if you have enough money, most people are willing to write off anything as being “eccentric,” no matter what time period you live in. Here is a short list of historical figures who may have been on the spectrum, before the spectrum had a name, and another longer list. Having researched both Tesla and Leonardo, I would say there is a very high likelihood that both of them had ASD. These would be examples of “high functioning” autism, or people who can generally go about in society without other noticing any major difficulties.
“Low functioning” autistic patients would be noticed in society. They might be nonverbal. They might not make eye contact. They might have one or more of a hundred ticks or obsessive behaviors that would give them away. If their families were not able to care for them or adapt to their needs, then they would probably end up in an asylum. These asylum patients would be the ones who got the attention and got a diagnosis and treatment, however incorrect or misguided it might be.
So, what was autism called before 1911? Basically, it would have been lumped in with numerous other disorders and labeled “mental retardation.” In 1877, Dr. John Langdon Down (aka the first person to describe Down’s Syndrome, for which the condition was named) began using the phrase “idiot savant” to describe patients who were typically nonverbal (“dumb,” in Victorian parlance) but possessed great skill in one specific area–usually music is the area we think of today, but could also refer to artistic or mathematical talents.
Down’s research included classifying his “mentally retarded” patients into categories: disabilities acquired at birth, those who were born normal but had an accident or illness that caused the disability, or the catch-all group with the leftovers: the developmental group. Based on his descriptions, this group was likely made up primarily of “low functioning” autistics.
The diagnostic criteria pre-1920 for anything related to developmental disabilities or mental illness wasn’t great. Most patients just got lumped in together. The doctors would describe their conditions, but most of the time they didn’t have a specific name for the individual disorder or condition. The goal was to make the symptoms go away.
In the past 5 years or so, the diagnostic community has been turned on its head as doctors have begun to realize that women with ASD routinely go undiagnosed. If you’ve read my earlier posts, then you know that conditions that target primarily women usually don’t get the research dollars “men’s” diseases do. And if you’re a woman today, then you probably know how common it is for friends, family, doctors, nurses and psychiatrists to dismiss any complaints or symptoms we bring up.
A Victorian woman was expected to be sociable, manage a household efficiently, be beautiful, and show the world how wonderful her husband was through her own skills. While many people on the “high functioning” end of the spectrum are very organized, that organization can fall to pieces if there’s the slightest change in plans. Many others–even under the “high functioning” label–have something called executive dysfunction, which makes it difficult to prioritize tasks, among other things. So for example, a woman who doesn’t personally care how she looks–despite society’s expectations–might have difficulty remembering to brush her hair every morning. The sensory issues could turn a beautiful walking dress into a torture device, between starched necklines, corsets, wool stockings, multiple petticoats, and high heeled boots.
It’s a sad fact that if a man is not skilled at social graces, it’s more easily written off than with women.
In the asylum & beyond
Treatments varied from facility to facility. And as I said, ASD didn’t exist on paper yet, so it was lumped in with a lot of other conditions. Depending on the severity of the condition and what specific traits were present on a given day, the treatment could fluctuate wildly, ranging from essentially a work house situation with vocational training to some of the darkest horror movie scenes Hollywood has to offer, including:
- cold water baths
- “miracle” diets, like the ones mentioned in my post about diabetes
- electroshock therapy
- behavioral training
Just to name a few.
In most cases, the treatment was worse than the condition. Autism itself is not a life threatening disorder. But some of the treatments used could and did cause the death of the patient. Often, they were considered “cured” when they shut down completely from the abuse, stopped fighting, and retreated entirely inward.
In fact, many of those treatments continued well into the 1900s, with electroshock therapy continuing into the 1970s. As recently as last year some parents of autistic children thought they could “cure” them by giving their children diluted bleach. Instead, they striped their children’s stomach and intestinal lining, causing internal bleeding, and severe psychological trauma. I hope every single one of them was brought up on charges.
[Okay. I need a deep breath after that. And maybe a shot of something, because seriously, people who give their kids bleach…]
Moving on to the early 1900s, and the first use of the word “autism.” It was coined by a Swiss doctor named Eugen Bleuler to describe schizophrenic patients who lived within their own mental world. One of his students took the description one step further, adding autistics have “…a lack of connectedness or unity with people and thus created a disturbance in the structure of the self.”
It wasn’t until the 1940s that it became a separate diagnosis–and came to mean something completely different. In 1943-1944 Dr. Hans Asperger was studying Early Infantile Autism at a German hospital. While his research really took our understanding of ASD forward by leaps and bounds, it is unfortunate that one of the reasons he learned as much as he did was because he experimented on his patients at the behest of Nazi Germany, so most of his patients died horrible, painful deaths.
[Now would be a good time for another shot, if you are so inclined.]
Throughout the 1960s and 1970s a variety of therapies and pharmaceutical treatments were attempted, with limited success. The 1980s and 90s saw the rise of behavioral therapies, such as forcing autistic students to make eye contact and behave as a “normal” child, and punishing them for noncompliance.
[If you think I’m glossing over the past hundred or so years of autism history, it’s because it makes me so angry and sick I have a hard time writing about it. See my sources below for more information.]
Which brings us up to today, antivaxers, and giving children bleach.
Today if you ask most autistics what they want, it’s simple understanding. The majority I have spoken to don’t consider it to be a disorder or disease, just a difference. They aren’t asking for a cure, just a little understanding and some patience from the people around them.
So, no. Autism won’t kill you. Not even in the 1800s. But abuse from family, medical practitioners, and society certainly could.
Update 4/4/19: Since publishing this post, I’ve been made aware of Grunya Efimovna Sukhareva, a Russian doctor who characterized autism twenty years before Asperger. For more information on her contributions, click here.
Like what you see? Check out #MHMon: The Relief of Diagnosis