This isn’t so much a blog post as a paper. There are footnotes and citations. Bear with me.
Have you had this experience? Someone in a group discussion notes that April is Autism Awareness Month. Then someone else says, “Oh, remember Rain Man? I watched it again recently! Isn’t that a great movie?” And then everyone has a lovely chat about movies. Unfortunately, this kind of response is what gamers call an Epic Fail. Let’s walk into April with some better awareness.
So, what is autism? What isn’t it?
Photo Credit: Nina from Australia, Rain, Rain, Go Away (CC BY 2.0) via Wikimedia Commons
What it is
Autism is a set of neurological characteristics found in as many as 1 in 50 people [2,3] that can lead to difficulties with social interactions, repetitive behaviors, or intense engagement in special interests. Not necessarily all these things. (So, you know 100 people? Well, you likely know a couple of autistic people.)
Nobody knows what “causes”  autism, although probably there are combinations of genes that are more likely to yield autistic characteristics. (It may run in families, like other polygenic characteristics, such as height.) Autism presents on a spectrum, so its current designation is Autism Spectrum Disorder (ASD)…though many autistic people will counter, “there’s nothing disordered about me!”
What it isn’t
Autism has absolutely nothing to do with vaccines—that absurd idea was generated by publication of fraudulent research, a real-world hoax that has harmed untold numbers of people [5,6,7]
Autism is not Rain Man. Dustin Hoffman did his best, and the film made a positive difference at the time, but that was over thirty years ago. The movie is now woefully out of date, and most autistic people find it discomfiting, stereotyping autism, families of autistics, and the way the world perceives them.
Autism is not sociopathy/psychopathy/other-mispercepathy. The number of mysteries or thrillers or police procedurals in which the murderer/terrorist/stalker is a shifty-eyed, unempathetic, twitchy weirdo whose speech patterns and movements and sometimes specific labelling code them as “autistic” make my hair curl. No, the autistic people of the world are not spying on you, plotting the perfect murder, or designing weapons of terror. Instead, as a class, they are the kindest people you know.
Autism is not the strange child. The vast majority of autistics are adults. Autism doesn’t go away when you grow up. Why don’t you notice? Those whose difficulties with the world are great still live in relative isolation. As for the rest, they’re “masking.” This isn’t a lighthearted improv exercise. It is a progressive modification of behavior—often unconscious, in ways learned over many years—to appear more like you, because they’re pretty sure you won’t accept them otherwise. (So, maybe this should be Autism Acceptance Month.)
Masking isn’t perfect; you probably think of your autistic friends as ‘the little-bit odd one’ or the ‘cute, quirky one.’ You may not see them around as much as your other friends—because keeping up masking is hard work. The older an autistic person is, the better they can be at masking—but then, it’s harder for them to change that. Also, be aware that if you realize a friend is autistic, it doesn’t help to tell them to stop masking. It’s a difficult process, and they’ll let you know when they’re ready.
Photo Credit: Dietmar Rabbich (CC BY 4.0) via Wikimedia Commons
Unfortunately, old movies like Rain Man leave the impression that all autistic people are weird geniuses, can’t take care of themselves, and suffer extreme difficulties with life. Yes, some are in that boat (and a rare few are even geniuses). It’s important to be sure everyone’s properly supported in life—can we simply agree to support autistic people with needs just as we support neurotypical (NT) people with serious life issues?
A few thoughts to keep in mind, no matter what type of neurons you’re thinking with:
Autistic people are, as a group, extremely honest. This presents complications—because most autistic people don’t react in conversation in quite the exact way that neurotypicals expect. For instance, if someone doesn’t look you in the eye all the time—a favorite behavior of NT’s—they’re perceived as “dishonest”. That’s unfortunate…which is why ambitious autistic adults work hard to make eye contact, even though it may be enormously stressful to do so.
Autistic people are empathetic—and have all the same emotions you do. They may express their emotions a little differently, but that doesn’t mean they don’t have the exact same feelings you experience. Your autistic friends may even be more likely to notice how you’re feeling and to empathize with you, because they are observing you and working to figure you out, all the time. So they’re not just in possession of that deep, humanizing characteristic, they’re actively working at it, every day.
This doesn’t mean that autistic people are all perfect, wonderful, nice, diligent, hardworking, or what-have-you and are somehow better than neurotypical people. Everyone has shortcomings—and autistics don’t need to become the next perfectionist minority. It’s just that the stereotypes (weird, twitchy, untrustworthy) are contradictory.
If you’re reading this, you’re probably part of the reading/writing community. Here’s another thought for you.
Well. Ummmm. YOU might be autistic. Nobody wants to think of themselves as “different,” but writers—whether they’ve gone the publishing route or not—draw heavily from a well of “difference.” Lots of us grew up feeling like we were “on the fringe” or “the odd one out.” We dive deep into the special interests that drive our work. We can go on and on and on about a character or a situation or a plot point—whether in a story we wrote or in one of our favorites. Heck, some of us can sit down and hammer out 50,000, 100,000, a million words. That’s hardly what nonwriters would call “typical.”
If you’ve secretly, quietly wondered if there’s something you don’t know about yourself that maybe you should, here is one easily-accessible book to read: Cynthia Kim’s Nerdy, Shy, and Socially Inappropriate is a clever, affecting story of one woman’s journey of self-discovery. Some terminology it uses, unfortunately, became outdated the year after publication, with the elimination (for very good reasons) of the problematic term Asperger’s [8,9], but the self-realization content still holds up.
Ready to raise awareness a little (or a lot) more?
Below are a couple of helpful, easy-to-access resources. You can find deeper reading by continuing to the Notes and Citations section.
Ask Autistic Adults is my current favorite website for quickly-accessed on-point information on what grown-up autistic people feel you should know: labels, appropriate language, effective support, fake/abusive “therapies,” and more.
The Thinking Person’s Guide to Autism is a web-based organization that provides a broad array of resources and connections to useful information for autistic people and their allies.
To catch up on the current zeitgeist in the autistic community, try the hashtag #actuallyautistic. To some extent, outsiders have tried to co-opt it, but the hashtag has withstood that pretty well so far.
Now, have a very happy Autism Awareness Month, everybody!
Below the blue umbrella: Notes and Citations
Photo Credit: Tom Mrazek, An Umbrella In the Dark, (CC BY 2.0) via Wikimedia Commons
Yes, lots of notes and cites. Because a blog post needs to be brief, but the topic is complex!
- No one person speaks for all people in any marginalized group. I make no claims that my perspective, or those of the autistic individuals I’ve cited here, is more worthy than that of any other member of the broadly-defined autism community. This essay cannot be perfect, but I will update it as necessary, and I welcome honest, fact-based critique.
- “U.S. Autism Rates Up 10 Percent in New CDC Report” Bloomberg School of Health. Johns Hopkins. 26 March 2020. (Accessed 29 March 2022) https://publichealth.jhu.edu/2020/us-autism-rates-up-10-percent-in-new-cdc-report#:~:text=Researchers%20at%20the%20Johns%20Hopkins,2016%20(or%201.85%20percent).
- “Rising rates” of autism do not reflect changes in the incidence of autism; rather, reports like the Johns Hopkins article reflect how wider application of diagnosis reveals that more people are autistic than was thought previously. This article in particular highlights a progression over time, as researchers began attending to this data and improving their diagnostic techniques. I linked to this article because it is quite readable and provides links to the academic papers and data, for those who are interested. The choice of a headline in a public-facing news presentation can be misleading—remember to read more than headlines.
- Autistic people, by and large, dislike using “cause” to describe the mechanisms underlying autism. It makes it sound like a disease, something you can “cure,” and that detracts from attending to what can truly help autistic people thrive in a largely non-autistic society, understanding what “therapies” are harmful bunk, and listening to what autistics think. However, it’s the term that’s easiest for a casual reader follow in the context of a (supposedly) brief article like this one. As a reminder, this is a note to a sentence stating clearly that the mechanics are still unknown.
- “Wakefield’s article linking MMR vaccine and autism was fraudulent” British Medical Journal (BMJ). 6 January 2011. BMJ 2011;342:c7452. https://www.bmj.com/content/342/bmj.c7452
- Wakefield’s horrific piece of hoaxery was published in the Lancet in January of 1998, and its awful effects have flowed into every corner of our medical landscape—even influencing vaccine resistance during the current pandemic. By the time the journal retracted the piece, the damage was done and the evil thought-virus of ‘vaccines are scary’ had spread too far to eradicate it.
- Eggerston, Laura. “Lancet retracts 12-year-old article linking autism to MMR vaccines” Canadian Medical Association Journal (CMAJ). 9 March 2010. Accessed via National Institutes of Health, 29 March 2022. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2831678/
- Hans Asperger, the man after whom the so-called “high-functioning” side of the autism spectrum was (temporarily) named, is now known to have been a eugenicist, Nazi-assisting child-hurter, and all-around guy-you-wouldn’t-invite-round-to-dinner. The article below  is an accessible read and includes references.
- Juntti, Melaina. “It’s Time to Stop Calling Autism ‘Asperger’s’” Fatherly. 9 December 2021. https://www.fatherly.com/health-science/aspergers-vs-autism-and-hans-asperger/
- Lutterman, Sara. “The biggest autism advocacy group is still failing too many autistic people” Washington Post. 14 February 2020. https://www.washingtonpost.com/outlook/2020/02/14/biggest-autism-advocacy-group-is-still-failing-too-many-autistic-people/
- I’m not going to glorify this page with a detailed citation. This cite is here to prove that the organization supports this kind of treatment. https://www.autismspeaks.org/applied-behavior-analysis/
- Ira. “Why ABA Therapy Is Harmful to Autistic People” Autistic Science Person. Accessed 29 March 2022. https://autisticscienceperson.com/why-aba-therapy-is-harmful-to-autistic-people/
- Sequenzia, Amy. “Is Autism Speaks a Hate Group?” Autistic Women and Nonbinary Network. 19 August 2014. https://awnnetwork.org/is-autism-speaks-a-hate-group/
- Ne’eman, Ari. “Autism and the Disability Community: The Politics of Neurodiversity, Causation, and Cure” 1 February 2017 (Initially presented at Emory University in 2013). Autistic Self Advocacy Network (ASAN). Accessed 29 March 2022. https://autisticadvocacy.org/2017/02/autism-and-the-disability-community-the-politics-of-neurodiversity-causation-and-cure/