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What I Want People to Know This Autistic History Month

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November is Autistic History Month — an event that is tailored to celebrate autistic history, culture and community, by sharing personal histories, art and creative writing about autism. Being recently diagnosed with autism myself, I thought I’d kick off the month by sharing a short history of autism, giving a quick rundown of what autism is, and sharing some thoughts on how autism applies to me.

First, a short history of autism:

1910 — The term “autismus” (or “autism”) is coined by Swiss psychologist Eugen Bleuer, referring to a subset of schizophrenic behavior. “Autós” is the Greek word for “self,” and Bleuer used it to describe patients who withdrew from others and focused solely on their own inner world.

1940s — Leo Kanner and Hans Asperger are both researching children with a similar condition — the former in the US in 1943, the latter in Germany in 1944. Kanner studied a group of nonverbal boys with more severe autistic traits, while Asperger’s “little professors” were more verbal (and thus seemed more intelligent), but had limited interest in socializing. Asperger considered his condition separate from “early infantile autism” (which is what Kanner’s diagnosis was ultimately called).

1967 — Bruno Bettelheim blames autism on cold parenting, leading to the (long since disproven) “refrigerator mother” theory, that autism was caused by uncaring parents.

1977 — Research conducted on twins shows that autism is genetic and caused by differences in the brain that occur during early development.

1980s — Autism is added to the third Diagnostic and Statistical Manual of Mental Disorders, or DSM-III, as a separate diagnosis from schizophrenia, with which it was previously paired. Autism is first added as “infantile autism” in 1980, then added again as “autistic disorder” in 1987.

1991 — The United States recognizes autism as a Special Education category for the first time, allowing schools to provide Special Education services to autistic students.

1994 — Asperger’s syndrome is added to the DSM-IV.

2013 — The DSM-5 (no longer numbered with Roman numerals) drops Asperger’s syndrome, pervasive developmental disorder, and other subsets of autism — putting everyone under the umbrella of autism spectrum disorder.

And here we are now, in 2017.

Of course, autistic people existed before the 1940s. We just didn’t know what autism was back then. Autistic people were the “deaf and dumb,” not responding when spoken to and declared “mute.” They were institutionalized or sent away from their families. There were reports, reaching as far as back as the 1700s, of “feral” children found abandoned in the woods — nonverbal but able to hear, uninterested in other people, and very set in their own ways.

Even up until the 1990s, many kids whose autism was characterized as severe were institutionalized. (This was what was recommended to Daryl Hannah’s mother when she was diagnosed with autism in the late 1960s/early 70s.) Others either suffered in silence without a diagnosis, or were misdiagnosed with bipolar disorder or schizophrenia, unaware that a difference in their brain structure was causing their difficulties.

Simply put, autism is a neurodevelopmental disorder that often affects social communication, causes restrictive and repetitive behavior (including intense fixations), and either increases or decreases certain sensory experiences. Also, autistic people tend to be very clumsy.

Over the years, I’ve learned to deal with my social and communication difficulties, typically by copying the behaviors and speech patterns of others. My obsessions aren’t super odd, compared to my peers (except for maybe my love of dinosaurs), and I can deal with most unexpected situations as they arise (saving the resultant burning out and crying for later, when I’m alone). I can also handle my clumsiness and motor awkwardness. I have personally accepted that sometimes, I’m just going to run into things, and that’s OK.

Hands down, I would have to say the worst part of my autistic experience these days is how my sensory sensitivities have increased with age. Things that used to only annoy me, like bright lights and loud noises and the textures of certain clothes, have slowly become more unbearable as time goes on. These feelings are amplified even further when I’m tired or don’t feel well. Since I can remember when these things didn’t bother me as much, I sometimes get frustrated when I get overwhelmed by sensory stimuli.

Other autistic adults have noticed this same pattern, with some complaining online about how unfair it is that, as they get older and work out various strategies to help with their social and communication issues, they suddenly have to deal with the inconvenience of heightened sensory input. As more research is done on the experiences of adults with autism, I would love to learn more about the ways the autistic brain changes over time.

So far, my life with an ASD diagnosis is pretty much the same as it was before, but it also feels, at times, completely different. I’m still doing my job and living my life, but every now and then, I stop and reflect on my diagnosis. I find myself wondering what I should do with this new information about myself. Who do I tell? How much do I tell them? Is it better to be proactive and disclose my condition before issues arise? Or would it come across as just an excuse if I waited to share my diagnosis until it absolutely needed to be shared?

As you can tell, there are still many issues people on the spectrum have to deal with. As Autistic History Month continues through November, I hope more people will take the time to consider what life is like for someone with autism.

To start, here is a video by Carly Fleischmann that simulates exactly how overwhelming and exhausting autism can be. I have started sharing it with some of my friends and co-workers, who have found the video to be very enlightening.

You can learn more about Autistic History Month at their official website.

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Thinkstock photo by Kot63.

Originally published: November 6, 2017
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