If you’re autistic, “Autism Awareness Month” is a special kind of hell.
(CN: this article frequently references ableism as it specifically relates to disability and autism.)
In a month that is theoretically about raising awareness of issues that affect me, my kids, and my community, I am invisible. There are very real issues affecting the autistic community: abusive therapies and “cures,” culture-wide sympathy with caregiver murders, and the total lack of acknowledgment that autistic kids eventually become autistic adults and have specific and individual support needs, to give some of the many, many examples.
But instead of focusing on those issues, Autism Awareness is focused on questions like whether autism is caused by vaccines (it isn’t), whether or not there’s an autism “epidemic” (there’s not), and whether or not Applied Behavior Analysis (ABA) is abusive (it is). Instead of focusing on us—actually autistic people—this month is about those around us. Our siblings, our parents, the poor neurotypicals who have to deal with us day to day.
For just a minute, think how it would feel to have every day of a month directed towards telling you that your life is a tragedy. If you can’t see how much that would hurt, I want you to think about what the word empathy means before I hear it misused for the 60th time since April started.
Autism awareness is useless to me and to my community. What we need is acceptance. Acceptance of autistic adults as authorities on their own neurology, acceptance of what autistic people define as the major needs of their community, and acceptance of autistic people as fully realized individuals, despite the fact that we may not act exactly like you.
A couple of quick notes:
- Throughout this article, I am using identity first language (autistic person) instead of person-first language (person with autism) because the vast majority of autistic people prefer IFL. I am also specifically not saying ASD, or autism spectrum disorder, because many autistic people feel that the term “disorder” unnecessarily pathologizes our neurology, which has existed for—at the bare minimum—centuries.
- It’s also important to note that autistic people are certainly not the only marginalized group where the majority disregards the group’s needs in favor of what they believe the group needs.
Autism Awareness Plays out in Specific Ways
I need you to understand the absurdity that is April and Autism Awareness in my world. I have a child who is medically diagnosed and has an IEP. This means that her classroom teacher and the teachers who provide in-school services are fully aware of her diagnosis. I am a very loud advocate for her needs in school, and I am also open about my own diagnosis. Autism is just a word in our world, and I work hard to make sure that there is no shame attached to it.
On Monday, I got our usual weekly email from the classroom teacher, informing parents of what is happening during the week. To my surprise and immediate anxiety, I found out that the school is dedicating a day to Autism Awareness.
The teacher noted that the kids were invited to wear red to school that day—I breathed a small sigh of relief because at least they weren’t being invited to “light it up blue”—and that they would be reading a book to discuss what autism is. I stopped feeling relieved.
See, most books about autistic kids are ableist and perpetuate negative stereotypes about autism and autistic people. They are written from the point of view of a neurotypical person, usually a sibling or parent or schoolmate. They focus on all the ways an autistic child—it’s always a child—are different from the neurotypical storyteller. They often perpetuate flat-out lies (we’re unable to empathize, we don’t have real feelings, we can’t understand sarcasm or non-literal statements, or we’re unable to form friendships).
The teacher shared the title of the book the class would be reading, and I immediately took to Google. I read the Amazon preview pages and began to cry. The book was every bit as awful as it could be. Written from the point of view of a neurotypical sibling, it described all the ways the autistic sibling was different from birth. It talked about how the sibling never said “I love you” without mentioning that behavior is communication. It talked about how the sibling didn’t use a lot of verbal speech without addressing how AAC can be beneficial for those with a variety of disabilities. It talked about how the sibling had “tantrums” without explaining the difference between a tantrum and a meltdown, or explaining how a meltdown is the way the sensory system can reset in the face of a sensory onslaught.
I frantically emailed the teacher, with whom I have a very good—one might say friendly, if one were inclined to snark—relationship. I said things like “This book contains all the negative concepts about autism that I have worked so hard to keep away from my daughter,” and “the person who wrote this book is considered harmful and abusive by autistic advocates,” and finished with “Please don’t do this.” I offered to come in and talk to the class about autism instead, offered to find video clips, offered to do absolutely anything to stop this.
The teacher was, thank God, receptive to my—well, calling it “requests” is just putting a nice veneer over “begging,” let’s be honest. She asked me if there were other books I could suggest, perhaps ones I had at home that were age appropriate that I could send in with my daughter.
Here’s the problem: I couldn’t actually think of a single one. So I did what I always do when I need book recommendations: I took to Twitter.
#ActuallyAutistic #AutisticAcceptance Are there *any* picture books about autism that don't suck? I'm frantically trying to find something for my kid's 1st grade class to read that isn't the shit they have planned. PLEASE RT.
— Kay is on Patreon (@KTildenFrost) April 3, 2018
More than 100 retweets later, all of Twitter came up with three books. Three. Two that are good books about autistic kids (Why Johnny Doesn’t Flap and I Love Being My Own Autistic Self) and one that I have described as “not actively harmful” (We’re Amazing 1-2-3, which is the Sesame Street book featuring Elmo, Abby, and Julia the autistic Muppet). It’s a decent book about a certain type of autistic kid, so it doesn’t specifically create the kind of pain that other books do; it also doesn’t allow for different kinds of autistic experiences. The kind of autistic kid that is represented by Julia doesn’t represent my daughter, but the book does seem to say that she is representative of autistic people as a whole.
So I ordered all three of those books, paying for one-day shipping where it was available, and they will be going to school with my daughter on Autism Awareness Day. I will cross my fingers and hope that nothing is said that hurts either of my daughters too badly. I will hope that I can undo any damage done by whatever happens.
This is what awareness instead of acceptance means. It means that I’m terrified that my kids will hear horrible, dehumanizing things said about themselves, their mother, and our closest friends. It means that I had long conversations with my kids about their choices if they hear things that hurt them. It means that, tears in my eyes, I told my kids that if they hear things about themselves or their family that don’t feel true, or that hurt, then those things are lies. It means that I reminded my 7-year-old that she could tell someone they were being a bully and get help from an adult. It means that I told my 10-year-old that I would stand by her no matter what happened, up to and including her yelling at the principal. That is, after all, her idea of the ultimate rebellion.
Awareness instead of acceptance means that charities which spend more money on salaries than they do on actual work get focus while charities that actually work to help autistic people are ignored. (Autism Speaks is the Susan G. Komen of autism organizations.) Awareness instead of acceptance means that autistic people get shunted aside in favor of parents who claim to be experts on us. Awareness instead of acceptance means that I spend a month hearing about how I should be cured, about how parents would rather have a dead child than a child like me, and that whenever I confront these ideas, I’m told I’m not one of “those” autistics.
And as autistic advocates work to get #AutismAcceptance trending on Twitter instead of #AutismAwareness, I can’t help thinking about Elvis Costello singing about peace, love, and understanding.
Would it be so very hard to dig deep into your famous neurotypical empathy and offer my autistic siblings and my autistic kids and my autistic self some understanding?
Looking for Understanding
There is no faster way to divide a community of autistic people than to, well, mention the show Community. Personally, I find the show to be the most autistic piece of media I’ve ever seen. What that means is that the show understands the same thing I do: the world is governed by arbitrary rules that aren’t clearly defined and that make absolutely no sense, but that you must follow them or face intense negative consequences that aren’t going to be explained for you.
I would argue that absolutely every character in Community’s Study Group is an example of what it’s like to be an undiagnosed autistic person. This is particularly poignant as Dan Harmon, the show’s creator, came to realize that he is autistic during the writing of the show. But that’s a separate conversation.
The character of Abed is stated to have Asperger’s in the first episode of the show, and he is the one who sharply divides autistic people. I am hugely pro-Abed. He feels like the person I am when I am completely and totally unfiltered. I am aware of social conventions, I have carefully studied what neurotypical body language and vocal intonations mean, and I can absolutely interpret those things if I need to. I find it both exhausting and irritating to do. I am so deeply passionate about certain topics that I instinctively relate absolutely everything back to them.
Abed is all of these things, and he doesn’t apologize for them. Occasionally, Abed reflects back to the group that their expectations of him are based on a total misunderstanding of who he is, yet he consciously chooses to go along with those expectations in order to maintain the Group’s friendship.
For example, in episode 1.17 “Physical Education,” the Study Group goes to great lengths to try and get Abed a girlfriend. Their plan fails, and they expect Abed to be so brokenhearted that he “can’t get out of bed.” Instead, when Abed comes to Study Group perfectly content, he says he’s really sad for the Group; he knows how important it was to them that he get this girl. Britta says to Abed that the Group just wants him to be happy. Abed replies:
Everybody wants me to be happy. Everybody wants to help me. But usually when they find out they can’t, they get frustrated and stop talking to me.
When I’ve been friends with neurotypical people, my experience is like Abed’s. People want me to diversify my interests into stuff I don’t particularly care about. They want me to make more friends, try new foods, experience new things. They want me to go places that are sensory nightmares. They think this will make me a happier person.
People fail to see that I already am a happy person. I am intensely passionate about a handful of things, and it’s okay with me that I maintain a barely casual interest in other things. I am deeply protective of my sensory needs because when I either accidentally overtax myself or consciously choose to enter an intense sensory environment, recovery takes days. I have a few very close friends who I would do virtually anything for, and I’m fine with that. Everything about me is big, intense, and I love being like this. I am happy, and more importantly, I am content.
The Study Group is aware of Abed; they directly reference Asperger’s in the first episode, and then frequently almost say the word (because that’s network television for you). They accept Abed; they sometimes find him annoying to be around, but they like having him in the Group, so they put up with the times he’s, well, autistic.
Abed misses or ignores certain social cues. He inflects his language like an autistic person; the inflection isn’t as big and dramatic as neurotypical people tend to use, which means that you need to attend to his words and pay attention to his context to understand what is being said. He speaks rapidly, something I often see in my autistic friends as our words struggle to keep up with our brains. And he rarely recreates the body language typically associated with interpersonal communication.
The Group doesn’t understand Abed. When they see a chance to change him, they take it, despite it being clear that Abed is perfectly content the way he is. Even though Jeff, the ostensible leader of the group, repeatedly tells them not to do this. Jeff seems aware of Abed’s comfort level, and the invasiveness involved in an unwanted and unwarranted intervention.
One of the most incredible moments of “Physical Education” is when Abed shows the Study Group what “on” looks like. “On” is what many autistic people call it when we turn on all the different things we use to pass. We inflect and modulate our voices more noticeably, we use more exaggerated facial expressions than are natural for us, we move our bodies in specific ways that we have been taught or learned communicate subtext and make us easier to understand. We specifically and carefully use constructed personas to allow ourselves to pass as neurotypical; after all, this is often the stated goal of autism “treatment.”
Being on—passing—is exhausting and often painful, but (many of us) can do it. For myself, I often compare “on” to being almost (but not quite) fluent in a foreign language. I understand most of the incoming communication, but I miss words and have to guess based on context or ask for clarification. I can speak fairly well, but have to reach for the words and make sure my grammar is correct. Being “on” for me is a very conscious process. If you’ve ever spent time in a foreign country when you’re not quite comfortable in the local language, you know how very tiring this process is.
(TW for the following clip: Pierce is casually Islamophobic. Throughout the show he is portrayed as casually racist, misogynist, and homophobic in various ways; the show consistently points out that his beliefs are inappropriate and incorrect.)
Danny Pudi does an amazing job of showing how this can be done like a party trick, flipping from “on” to “off” and then back to “on.” I’ve done this party trick too, either with neurotypical people who I’m more relaxed around, or to laugh about the differences between “on” and “natural” with my autistic friends. It is generally found to be distinctly creepy—because it is. When I’m “on,” I’m acting. Abed addresses this by pointing out that he’s doing Don Draper from Mad Men when they want him to be seductive; when he does Jeff, he uses “10% Dick Van Dyke, 20% Sam Malone, 40% Zach Braff from Scrubs, 30% Hilary Swank in Boys Don’t Cry.”
Britta (whose social experiences on screen reflect my own, whether the actress does this intentionally or not, this is absolutely a portrayal of what it can be like to be an autistic AFAB person navigating the world) is the only one who mentions that this is creepy, while the others find Abed’s performance to be various levels of sexy and appropriate. Even Britta encourages Abed to use the Jeff persona to try and get the girl. They don’t understand who Abed is or what he needs, even though Abed is perfectly aware that the Study Group will be upset that their plan failed.
Abed has more understanding of the others around him than they do of him. Frankly, this is how my world has always been. I understand neurotypical people just fine, especially their emotional reactions to various situations; it’s me and those like me who are rarely understood.
This April, don’t bother with awareness. See if you can go beyond acceptance. Try some understanding.
18 thoughts on “I Don’t Need or Want Your Autism Awareness”
Oh gosh, I love that show so much. Clips just remind me how there was nothing else like it. And I see what you mean about Britta, now that you mention it.
This is the thing that is so confusing to me lately, because the ways autism is diagnosed have changed since I was a child. Nowadays I would probably be diagnosed. As a teen it was just, “Oh, look, you’re one of those people who has ‘shadow symptoms’ of autism without having a full-blown disorder,” which, like, we were reading literature to help my brother, who himself ended up diagnosed, not with autism, but “Pervasive Developmental Disorder–Not Otherwise Specified.” Now, the one thing I HAVE been officially diagnosed with is ADHD, and in those communities it’s been coming up that some people are considering THAT as perhaps actually being On the Spectrum, too.
…but what it really means is I looked at the time and I was supposed to leave for work five minutes ago, so I can’t finish this comment right now. Perhaps I’ll return!
I’m having trouble logging in to comment from my work computer, but for some reason it works thru GeekMom editor.
Kay, thank you for this eye-opening post! I have been very encouraged by the efforts in recent years to bring autism into the mainstream; to make society simply accept that there is diversity in our population and this is part of that diversity that we need to value. My oldest son (age 15) has indicated in the past that he has to do the “on” and “off” thing, which didn’t make sense to me at first (it’s not as difficult for me in social situations). But then my husband mentioned that he also has to mentally really prepare himself for social settings and that’s he’s exhausted after interacting with people for too long.
I know I’m one of the ones who needed to hear this message: I need to adjust my mindset from “awareness” to “acceptance”.
Thank you for reading <3
It was the bathroom thing in Football Feminism & You that sold me on the Britta thing. The way she completely doesn't understand the subtext of what's going on, never has, and desperately wants to. Shirley finally explains it to her, and it goes SO FAR against the grain, but she wants the connection, so she does it.
Thank you for writing and posting such a beautiful and intensely personal article. I deeply appreciate the reminder that not everyone’s happiness looks like our own individual definition of the term and that’s beautiful. As an intensely introverted person, I tire of those around me telling me that I’ll be happier if I “get out more” or “network more often”. I AM happy in my home with my pets.
How very boring the world would be if we were all the same. I also appreciate the reminder to take a close look at “awareness” books to see from what perspective they are written and what the actual community addressed feels about the book.
Thank you for reading it!
Thank you for writing this!
Thank you for a much needed, eye-opening look at autism. Even though my 13 yr old son is an Aspie, having some things explained from the adult perspective is helpful to me as a parent. I wholeheartedly agree that the emphasis now should be on understanding and acceptance. Historically, I get where the “awareness” campaign was originally helpful, but that goal has been met and the focus needs to shift.Thank you for bringing this concept to the surface; it will be my new normal.
I’m so glad it meant something to you, Susan, and thank you for taking it on board.
I Like the book All My Many Stripes by Shaina Rudolph and Danielle Royer. I try to take it with a grain of salt that while an autistic child may not be everything described, I can see bits of different people represented (kind of like in Community). I often suggest the book The Reason I Jump. By Naoki Higashida. For adults who want more insight.
The Reason I Jump is a great read for adults; I also recommend Neurotribes as well as Julia Bascom and Sparrow Rose Jones (whose name is now Max Sparrow, though he has not changed his name on his previously published books).
All My Many Stripes is actually one of the books I’ve read and rejected over the years. It uses the “with autism” language that I’m trying to denormalize with my kids, and I’m pretty concerned about any books that use anthropromorphized animals to represent disabled kids or to discuss prejudice. The “it’s just another way of being special” language is really minimizing; as much as I’m an autistic self-advocate who is furious with people who say I need to be cured, autism isn’t all roses, you know? I really prefer and use much more neutral language: it’s just a word to describe a part of me.
Thank you for this explanation. As someone who has had breast cancer, I have a similar dread of October when people “help” me in ways they have decided to do so. I will definitely be working on being more aware of what others need during this and all months.
Yes! I didn’t want to speak for a group I do not belong to, but I’ve heard that in October as well from other folks who’ve had breast cancer. I’m glad this was a good read for you.
Thank you very much for the article, as the parent of an autistic child, I really appreciated the perspective you have on Autism Awareness Month. My son also noticed and didn’t like the “D” in ASD and so we immediately stopped using that term in any context.
Although I’m not affiliated in any way, I am still hesitant, but I wondered if you would be interested in charitable organizations that seem to “get it” in regards to Autism and the difference between awareness and acceptance? There’s an organization based out of Toronto that is using games as a way to connect with Autistic children, as well as others with special needs.
Greg, I love that you heard and respected your son’s feelings about the D. Thank you for that, from a neurosib.
Thank you for being cautious. Yes, I would love to hear about the charity in question. It’s always good to know about those who are doing good work. Would you drop me an email at ktildenfrost at gmail dot com?
I’m not familiar with any of the television references you made–my visual and auditory challenges make it incredibly difficult for me to get meaning from television and movies. But I disagree entirely with your introductory theses. There is absolutely an autism epidemic. I’m autistic and my perspective is very different from yours. https://www.madinamerica.com/2018/04/neurodiversity-dead-now-what/
Thank you for sharing this — and I thank K for her original post, too. I want to be clear that both your perspectives, contrary as they seem, have been very helpful to me, and in fact it’s the combination of the two that is most enlightening. K has made me more sure that, yeah, I’m just neurodivergent, and I’m allowed to be; but your post, Twilah, put into words the things that were confusing and bothering me about the #actuallyautistic movement, particularly that it’s fine and dandy being an awkward nerd who’s easily overstimulated, but there are other people having a much worse time of it. One of the reasons I’ve never felt comfortable calling myself autistic, although I clearly would qualify under the current definition, is that my brother is far less capable of navigating the world than I am, and even he is better off than, say, my friend’s barely verbal daughter, who was born premature so yeah there’s environmental impact there, and she’s better off still than some. You can accept and celebrate your differences but still acknowledge that it WOULD be nice to find better therapies and yes, cures for some of the aspects of your differences. I’m highly sensitive, but I also suffer from chronic depression. Initially I was afraid antidepressants would stop me from being, well, me, in all my highly sensitive glory, but there’s a big difference between “easily moved” and “catatonic with hopelessness.” I think we should be allowed to both accept our tendencies toward overstimulation and social awkwardness AND want a “cure” for the more difficult experiences.
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