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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.
— K. Tilden Frost (@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.