There are two sentences I try not speak aloud. There are two sentences that I don’t even dare write directly down. There are two sentences that tell the story of who I am, or at least the parts of me that I carefully guard. These sentences will change the way people think of me, will make me so easy to dismiss: I know because they have so many times before. This is a story about one of those sentences.
This sentence is especially terrible to write down because I have been looking for full time employment for a long time, and I know employers will look at my online presence. I encourage them to. I want them to see how well I write, how creative I am. I am proud of the stuff that I write. I will be proud of this, even though I am terrified.
The summer before I went to college, I finally received an answer to why I was so different than everyone else: I have Asperger’s syndrome- one little speck on the Autism Spectrum.
The funny thing is, when I was a little, sweet girl my mom went to the doctor because she thought I had autism. The funny thing is, they told her that I couldn’t have autism, not this sweet little girl that knows how to talk. (this is important- it will be hilarious how they brushed her story off by the end of this post.)
When I was in high school, I cemented my first friendship after she wanted to give me a makeover. I wrote a long note to her saying how dare she try to change my (in retrospect, terrible) style. Fashion is how I /express/ myself. (the 90s were not kind to us fashion renegades.) She had no idea that the girl who never really spoke had all these words inside.
I want you to notice something about these two stories: the protagonist is a sweet little fashion forward girl. Autism is often described as “the extreme male brain.” Is it no wonder that the narrative I was telling in my childhood, the narrative of “something is wrong with me, please help”, was brushed off so easily for so long? The story of people with autism is Sheldon Cooper or Rain Man. Everyone forgets about Laura Wingfield and she is left to deteriorate in her mother’s apartment. (even the prettiest of unicorns would rather sit on the shelf with the rest of the horses.)
It makes sense, in retrospect, that I was so interested in studying Anthropology as an undergrad. I studied human culture in the same way that others would study animal biology: what is this strange, fascinating creature and how does it work? What didn’t make sense to me was how much my writing was praised: essays, response paper, the terrible fiction I wrote in the creative writing classes that I took “for funsies.”
Since I got my diagnosis, my mother and I joined the Aspergers Association of New England, or AANE. They were very helpful. One thing I learned from them was that most people on the spectrum have a special interest. Was writing mine? Did all the black composition notebooks and hours of picking apart every story (even comic strips, even the goofy copy on the back of cereal boxes) mean something? I graduated when the recession hit and all of a sudden my plans were meaningless, so I decided to find out. I applied to ONE MFA program to see what would happen. I got in. I wrote the kind of stories that I thought everyone else wanted to hear. My three mentors said “Stop that.” I stopped and I started writing the kind of stories that only I could write. I earned my MFA. (I still live with my mother but I am a published author.).
(I told a story for Testify Austin a few months ago about how the way people with disabilities are treated by “normal” people is the worst part of being disabled. I talked about how my special interest – or “thing”- is stories. Afterwords the most amazing woman took my hands and told me “I don’t think your thing is stories. I think your thing is people.” That changed my life and I keep her words close to my heart. But I haven’t told anyone, because who would agree with her? How can an Autistic person be interested the most in taking care of other people?)
There is a reason I am telling you this. There is a reason I am focusing on the storytelling part of my life. Remember AANE? I think they are wonderful. They helped me out in a time where I needed a lot of help. They helped me to find services and support groups that made me capable of small talk. I wrote my first ever published article for them (it’s terrible. my prose is terrible don’t look it up.). I taught my first ever workshop with them- a small bookbinding workshop. ( I leave these accomplishments off of my resume.)
The other night my mom said to me “I’m going to read you something just because I want to hear you rant.” (she thinks my rants are comedy gold.) This is the email from AANE that she got (emphasis mine):
“People with Asperger Syndrome often have difficulty telling a story. Narrative is used to connect with others and convey information. In this webinar, we will discuss why the development of the narrative is so difficult for people on the autism spectrum and what are some tips and strategies that can be used to help them develop this skill. ”
At first, I was like, “Lol, that’s funny you should share with them my accomplishments.” And mom was like “ok, I will.” And it was funny to me, because I never really felt like I fit in with what an autistic person is supposed to be (remember the male brain?), just like i’ve never felt like a “regular person.” Then mom wrote all my accomplishments down in a list and I was like “holy shit i’ve done a lot.” and I was like “holy shit why can’t anyone else see this? why am I living with my mom? why am I so invisible all of the time everywhere? Why am I not even a normal autistic person?”
Then I remembered this story: AANE put on an art show. I submitted some of my illustrations and they were accepted. I had them framed and they were put up for sale and priced in a way that makes sense for any other art show. I was up there with collage artists and painters and this one guy who did these really amazing paintings on the backs of photo negatives. I had a conversation with him, and he explained to me that he picked those pieces and that technique because the particular show we were in was a show for people on the Autism Spectrum. He told me how he was telling a story about what it meant for him to be a person with autism. He looked at my art and told me what he saw it in within the context of this show (I didn’t have the heart to tell him the truth. “I just make silly cartoons, man”).
Art. dance. writing. even science and math,even listing off facts from a favorite TV show. People with autism are out there telling their stories, engaging people with their narratives every day. Whether or not people listen to your story isn’t a controllable element, even if you know the “right ways” to tell a story. (even in social settings, there is no right way to communicate. Rule one of any performance, social or otherwise: there are a lot of audiences. Not every audience will be “your” audience.)
After my mom wrote the list of my accomplishments that she totally brags to everyone about all the time anyway, I asked her to add this:
“She[I] told me [my mom] to say she isn’t sharing this because she is bragging, but as Dr Shore says, if you’ve met one person with autism you’ve met one person with autism. The idea of narratives is important, but therapists and allies putting the narrative out there that “people with autism can’t tell stories” unintentionally erases people with autism who have that skill. Every individual with autism has different strengths and weaknesses.”
It’s imperfect, it’s unartful. It’s something I said when I was feeling stuff, emotionally. I was Marty McFly getting erased from the picture, desperately strumming at my guitar in hopes of changing something. What did I want from this conversation? Now that I’ve processed my emotions I can tell you this: I wanted to make sure the narratives people were already telling were not going to be erased. I wanted them to acknowledge that people with autism- not just me- were already performing their own social narratives. I wanted them to acknowledge that people with autism are communicating something, even if their narrative does not fit in with the predominate way of conversational storytelling.
Should people take this workshop? ABSOLUTELY. I am the last person to suggest that learning about how narrative connects to daily communication is a bad idea. Neurotypical people should take these kinds of workshops, too. This is an Important Skill that a lot of people lack.
But shouldn’t people who claim to know about social narratives and what they communicate also be aware of and leave space for the kinds of narratives that minorities are already using, even if those narratives are incredibly different from the dominant narrative? Shouldn’t they at least be open to the possibility that these narratives exist? (what do I know I’m just autistic.)
I sent this short narrative along, unartful and inelegant as it is, in the hopes that the people running this workshop would understand the information I was trying to convey. (spoiler alert, they didn’t. I feel like an emo kid yelling no one understands me.)
My mom included me on the email chain and I didn’t want her to. I knew that there would either be angry backlash or I would be brushed off. I knew that they would see my story and think I was saying “Look what I can do. Obviously no one needs this workshop.” I told mom to send paragraphs and paragraphs of information and she told me to cut it down to what remains. I was scared if I only included a little bit that I wouldn’t be understood. That the information i wanted to convey narratively wouldn’t be enough for me to be understood.
This is part of the email my mom sent me this morning, written by the speaker (emphasis mine):
“For this webinar I am speaking about a common problem, that has been documented. It impacts more than just telling and writing a story. We use narratives in our social interactions. It’s what we use to convey our experiences and provide other information, so weakness in this area impacts social competence. Certainly with the title “Unstory” I am exaggerating, but teaching narrative is important for many reasons.
I think people with Asperger absolutely can and do learn to tell and comprehend narratives, and if it is a special interest I have no doubt they excel. For many however, they need more targeted practice than is sometimes offered.”
Once again, I do think her workshop is worthwhile. I think people who want to brush up on their social skills and narrative skills should most definitely take it, and learn all they can from it. That’s not what this was about. It wasn’t about “look at me, I’m special” either. It was about “When you teach this workshop, will you please take into account the narratives that these people are already telling in their every day lives? Will you please make sure that their own way of communicating, their own way of looking at the world is neither erased nor presented as if it does not exist at all?”
I told my story to my mom, who wrote my story down, in the hopes of having a social interaction with the people who were writing the copy for the workshop in question. I had hoped that my story would change the language they used when talking about narratives, because I am very well aware of all the thing that narratives impact. The narrative that others tell about people with autism impacts my every day life. It’s what makes me scared to share one of my most honest narratives.
I was going to apologize for the miscommunication in an email. I was going to say what I said here. (but briefly, since it’s email). Then I realized what the problem was: they were not my audience. What I wanted to talk about was only tangentially related to their webinar. What I wanted to say has little to do with talking. I wanted to say it to everyone. I wanted everyone to change how they tell stories about other people. I want every one to take into account what they consider a good story and what they feel is easy to brush off. I want everyone to reevaluate who they are listening to and how.
Here is my very short workshop for you, a human being who is going to interact with other human beings, most of whom will have a different way of communicating. (part of this is blatantly stolen from some very smart kindergardeners I know):
no, actually listen.
Listen with your ears, your eyes, your mouth, your heart and your whole body.
They are telling you something. They might not be telling you something that fits into the narrative you know. Learn new narratives.
Conversation is a two way street. Often, without knowing, you place the burden of the conversation on the people who don’t know your rules. People with disabilities (who you will talk to in baby voice or do everything in your polite, socially appropriate way to distance yourself from, or will just ignore). People who are still learning your language (who you will do all of those things to or complain about them not speaking English.) Really old people. Really young people (baby talk is stupid,even for babies). People who, for whatever reason, have a different social narrative than what you are used to.
It’s easy to brush someone off if they “don’t know how to communicate.” Listen. They are telling a story. They are telling their story. The successful ones will learn how to communicate in your style. But so much will be lost in translation.