Ask an Aspergirl

Essays and poems about Autistic experience, mental illness, & (post-) ABD life

Tag: internal narrative

Reframed narratives and Autistic experience

Cynthia Kim, an Autistic blogger and non-fiction writer, includes a passage in her book, I Think I Might Be Autistic that resonated with me:

“There are other people like me! I’m not defective. I’m not randomly weird. I’m an Aspie. One of many.”

In response, I wrote in the margins of my copy: “And this is an incredibly powerful statement, telling shame to fuck off.” (I’ve noticed that as I’ve found ways to manage the anxiety, my expletive usage has increased considerably. Part of me still feels apologetic; the rest is strangely amused.)

It’s been nearly two years since I began this process: exploring the possibility that I might be on the spectrum, not ready to call myself “Autistic” (wondering if I fit anywhere) and lingering on passages from Rudy Simone’s books and later the writings of autistic bloggers. Last summer, I wrote a series of poems exploring Autistic identity; I called them my proud poems, after Laura Hershey’s “You Get Proud By Practicing.”

These are your bits of narrative. Claim them. Embrace them. Feel them out. This is not a rejection of the self you knew — this is a renaming, an honoring.

Not weird — othered or strange — different perhaps, quirky — autistic in a way you haven’t all the way acknowledged. Every word but that one. Yes, this is a thing.

Last night at open mike, I read these words aloud. I spent the evening moving my Tangle back and forth between my fingers. Perhaps I was trying to lessen my nerves about reading in front of a crowd. It’s like Fight Club, I said to the friend siting beside me; if I attend open mike, I have to read. I realized sitting in my seat, that I would be calling myself Autistic, claiming that identity for myself in front of a crowd that size. “What if I’m wrong?” I thought. “Remind me why I’m outing myself in a public setting.”

Because this is the night of #shediditanyway, I told myself. When women share their stories with one another, maybe from the professional distance of 3rd person, but these are our narratives. You want to be part of that experience, even though you’re scared.

So I shared two proud poems, amongst the shaking of my legs and the audience before me. I’d already witnessed the tears and snaps that accompanied the other women’s poetry. They clapped. I walked back to my seat; the night continued. A friend from school hugged me afterward, telling me she loved “She Did it Anyway,” a poem that began as a shaming. In retelling that experience of shame, I wanted to find another story.

I’ve attended womyn’s writing circle these last two years as well. I started attending this group the same semester I started the PhD program, the same semester I acknowledged to myself, “I think I might be autistic.” I love the carefully worded nature of Kim’s title — how it reflected my experience of exploring my own identity. I think… I might be… It’s harder to form the words that follow because I could be wrong. And that’s still terrifying.

I’ve written so many versions of this narrative — why no one noticed my autistic traits as a child or even adolescent, then young adult (until they did), how I successfully completed undergrad, and where I made friends. Questions remain about what happens to Autistic adults like me — seemingly unicorns, whose therapists ask, “You mean Asperger’s, right,” even though it had been a year since ASD encompassed the entire spectrum.

We become incredible self-advocates — keepers of our own stories — because we have to — to be ourselves; to find a measure of self-understanding. As we learn to believe ourselves. Of course this is a thing, she replied.

My Autistic experience is a series of narratives — reframed, retold, and sometimes rewritten entirely. And the first page will state, in a voice that is growing louder, “She did it anyway.”

A weekly sharing of stories and dinner

Study group watching Christmas special I remember being really nervous the first week I went to dinner group. A friend and I were invited for pizza and game night with a couple from church who hosts these weekly gatherings. I packed my Mary Poppins bag: a large blue purse containing my Tangle (a fidget toy), poetry journal, and a book (that night: Cynthia Kim’s  I Think I Might Be Autistic). I usually bring at least one book to social gatherings — just in case. Sometimes what I’m reading becomes a point of conversation, but other times, it’s a way to recharge.

We arrived that evening to meet a couple in their 30s, a sociology PhD student and an engineer. They seemed nice enough; a mutual friend, who’s also a community pastor, had introduced us via email. At this point in the story, it’s probably important for me to note that I mostly attend church for the people. It’s a familiar point of contact I’ve had for most of my life. Their small children let me play with them, which was a welcome distraction from the unfamiliar (although friendly) setting.

As we ate pizza, we were invited to share our backstories. In a way, this sort of free form conversation felt like the intake interviews I’ve sat in before: “So what brought you here today?” And so I began telling my story, more deliberately than I do when I’m feeling overwhelmed at a coffeehouse and start talking at the nearest person. I talked about growing up in a relatively isolated environment, having trouble trusting people, and recently realizing I’m Autistic. These were the sorts of details I’d ordinarily allude to in conversation, but instead I got to say everything all at once. This is who I am; I feel safe enough to share that with you.

I’ve since attended dinner group once a week, and I’ve been grateful for this intentional community. It’s a loose knit group of grad students, seminarians, undergrads, and working people. Thursday nights are my pause button, a time when I’m closer to sharing how I’m actually feeling. I could be frustrated and uncertain, utterly exhausted, yet not be alone in that space. I can sink into the comfort of the couple’s couch with a cup of  Roobois tea and talk through the confusion of the week.

We close with a time when people can review the week’s events and ask the group for prayer. Sociology PhD student says that rituals are important for communities like ours. We share and then reflect. I join in a familiar religious practice I don’t entirely understand, perhaps to honor our myriad of experiences (or the echoes of belief I still can hear). I’ve said before that I mostly attend church for the people. Maybe dinner group is an extension of this practice, a way of sharing in others’ internal narratives using a common language.

As the semester begins next week, I’m grateful for a group that reminds me, “The longest, coldest, darkest nights can be the warmest and brightest.”

On unfamiliar spaces

“I don’t recognize this space. Perhaps if I did I could find my way through it.” These thoughts seem to be on loop lately, as I’ve reached the end of the semester with two Incompletes and a bewildering sleep deficit. It’s hard to advocate for yourself when you’re in autopilot, using the social scripts you’ve accumulated — when describing yourself as okay seems to cover a wider range of emotional states. It’s difficult to convey how overwhelmed you’ve felt, while maintaining others’ confidence in your ability to eventually complete tasks.

I’ve spent this fall semester wondering what happens to people like me — those of us who can push ourselves to manage, but ask for how long. I’m three classes, one preliminary exam, and an oral exam away from proposing my dissertation. And yet I sat in front of my PhD mentor talking through options, asking myself if I was capable of finishing my graduate program. Sleep eluded me this semester, even as I visited my old psychiatrist hoping to find a pharmaceutical remedy with minimal side effects. With the insomnia came my lingering self-doubts.

I text myself the statements I want to internalize. The kind words I need to hear when I’m frustrated with my own limitations and fearful I’m worsening the situation.

“You are doing what you can with the the resource that you have. Even though I feel stuck, I’ll find my way through.”

I’ve struggled to find time (or energy) to write this semester. I feel like I’ve been in triage mode this semester: creating new timelines when the previous ones were unmet and trying to ask for help without oversharing. I wanted to find a coherent narrative amongst my struggling through: This happened, so I did that, and that’s why things resolved. I’ve longed for a linearity that doesn’t come so easily.

Perhaps I’m creating a narrative that doesn’t exist yet.

And so she learned to imagine these things were possible, that she could manage, not in spite of, but because of.

What would you think of someone who’d been through all of that, who was where you are now?

She’d be pretty amazing.

The contextual language of autism

I’ve previously written about how my lived experiences have shaped my interest in social-emotional supports for autistic women. Because of this research background, I find myself in conversations with strangers in cafes about the etiology and outcomes of autism. We inevitably talk about the seemingly increasing rates of autism diagnosis (and review correlation vs. causation) or about their neighbor’s quirky child (playfully mocking stereotypes about autistic boys who love trains). At some point in the conversation, I mention my interest in developing useful programming for autistic women and attempt to steer the dialogue away from my background.

In these impromptu autism discussions, I consciously use identity-first language — referring to autistic adults, rather than adults with autism. This is an intentional decision that reflects my identity formation as an autistic woman — a way for me to distance myself from medicalized language of deficits and pathologization of difference. I frame autism as another way of being that is characterized by social, communicative, and behavioral traits. Sometimes I give a brief explanation of the social model of disability.

In my department, I’m expected to use person-first language when discussing disability in an academic setting, including autism. When I talk with our program coordinator, I use person-first language (e.g., young woman diagnosed with autism spectrum disorder – ASD). The identity politics of labels rarely becomes part of such discussions; person-first language is assumed to be the most respectful way to talk about disability issues.

When I began exploring the possibility that I was on the autism spectrum, I reviewed the DSM-IV criteria  and realized I met criteria for Asperger syndrome (AS). Since I didn’t have a clinical label, I said I was an Aspergirl, using Rudy Simone’s invented term from her book of the same name. It felt disingenuous to say I was an Aspie or Aspergian since I was only self-identified (or as I prefer, self-recognized) as such. In online settings and among trusted friends, I started referring to myself as an Autistic woman when I studied the DSM-5 criteria for ASD and acknowledged these traits were consistent with my experiences.

I suppose my contextually-based use of identity-first language or person-first language is a form of code-switching. My word choice changes depending on the types of listeners involved. In professional settings, I use person-first language since this practice is embedded in Special Education culture. In personal settings, I use identity-first language because autistic traits deeply influence my experience of the world. I find the language of disability utterly fascinating, especially as I’ve begun researching the social worlds of autistic women like myself.

I remember writing my Twitter bio and wondering if I was allowed to call myself Autistic. Would I be appropriating the experience of people who’d received a clinical label after days of testing and sharing their story with a stranger? Was I expecting other autistic people to judge me as I made sense of my experiences? This summer I wrote a series of poems about exploring autistic identity. These pieces felt like a series of conversations in which I was giving myself permission to call myself Autistic, if those traits resonated with me. I remember reading these lines to the women in my writing circle:

These are your bits of narrative. Claim them. Embrace them. Feel them out. This is not a rejection of the self you knew — this is a renaming, an honoring.

Not weird — othered or strange — different perhaps, quirky — autistic in a way you haven’t all the way acknowledged. Every word but that one. Yes, this is a thing.

I’m still trying to figure out how to be Autistic. I read journal articles about people like me, as I continue my graduate studies. I continue to have conversations about the autistic experience, realizing that my narrative is both shared and my own. Sometimes I feel like I’m pretending, but I’m reminded,

Pretending is something you do when you’re working through what is, imagining what could be. Acting as if — as you become the person you know you are.

Serpentine hallways and waiting rooms

As I took the elevator to the private mental health clinic, I felt vaguely terrified. The hallway of the third floor office space was serpentine, but each entryway was clearly marked. Law firms, clinics, and assorted businesses lined the walls. I arrived early, hoping to avoid getting lost on my way to the clinic.

And so there I was, approaching the closed windowed help desk — ring bell, wait, and receive yet another stack of fun forms: what I sarcastically call intake paperwork. These past few years, I’ve filled out plenty of documents about my life. Intake feels like an exercise in describing everything that is wrong with me.

Who are you and why are you here?

I wonder that too sometimes, but I suspect you’re asking for my mental health history. “Describe in two sentences what brought you here today.” I don’t know if I can do that.

I’ve managed to fit my backstory onto a two-page document. It feels more succinct than the experience itself. I’ve grown familiar with waiting rooms. I know the rhythm of my usual therapist’s office, but the clinic was new (and therefore inherently scary). Preparing for new is still difficult for me. I spent the earlier portion of the afternoon at the neighborhood cafe. Routine is steadying on these sorts of days — when I can’t predict or plan for the events that follow.

In the half-hour before my session, I noticed myself fading away. I sat firmly in my seat. My brain wandered across town, filled with anticipatory anxiety about seeing the new therapist.

You know about autism. Perhaps you can help me in my sensemaking and workarounds. But maybe you’ll tell me I’m entirely wrong — invalidating my process, invalidating me.

That was the fear. The idea that my brain found utterly terrifying — hence its running and fading. Before leaving the cafe, I informed the kindly proprietor that I was feeling horribly distant from myself. I knew I could manage; I was already returning back to myself, but the feeling was still disconcerting.

The appointment itself followed the all-too-familiar script of first sessions: “Tell me about you and why you’re seeing me.” I talked. She asked questions. I attempted to respond, but often found myself lost in the dialogue. I stimmed through much of our conversation, as I wrapped green putty around my nail beds. By the end of session, new therapist informed me that although she has a special education background, she knew as much about autism as my primary therapist does. However another clinician in the building, Dr. M., has extensive experience working with autistic clients. In the meantime, new therapist agreed to help me apply to Disability Services at school.

My research background leaves me pretty skeptical of autism professionals, but I still asked to be placed on Dr. M’s waiting list for December. Perhaps she’ll have a cancellation, but until then, I’m in another waiting room. I left the clinic feeling proud of myself for going to the appointment and wrote post-session notes to myself. If I forget to summarize such experiences, my mind tends to negatively distort the details of session.

I wish there was a definitive ending to all of this. I didn’t get to leave the office triumphantly with an autism label in my hand. I still haven’t seen a professional with an extensive autism background. I know she exists, but mostly appears to see children and adolescents. I still feel like a unicorn. These in-between spaces are hard; I know I’m autistic — my social, communicative, and behavioral traits are consistent with an autism spectrum diagnosis — but I have yet to meet a professional willing to confirm my thought process.

For now, I remain “in this created space — creative space.”

We are ourselves, with little explanation. Needing no one else to fill in our gaps. We are our own. Here anyway. Coda. Yet this space, although not enough, is a starting point. Free from labels or to label as we wish. Existing together in a shared collage of narratives.

We are here in this place. We fit. We belong. And we are enough. Together.

Autistic in academia (or how I ended up inadvertently studying myself)

“Many of us will become interested in psychology and the helping professions along the way, either because of our diagnosis or in search of it. We find we want to nurture and help others in their journeys because we know how hard it can be.” ~ Rudy Simone, Aspergirls

I am a PhD student whose primary research interest is the social experiences of autistic young women — the supports available for them and their everyday experiences. I am also an autistic woman — this is not a coincidence. In undergrad, I remember writing my freshman seminar paper on the consciousness-raising groups of second-wave feminism. These second-wave feminists spoke of how “the personal was political.” They saw how their individual experiences were reflective of community-wide issues.

For me, the personal has become academic. I first started reading about autism, specifically Asperger syndrome, because a friend of mine in undergrad had mentioned her diagnosis. Rather than be the person who asked nosy questions or said something unintentionally offensive, I decided to pick up Tony Attwood’s The Complete Guide to Asperger Syndrome. I read it cover to cover, and then began collecting blog entries and online articles in a folder on my computer. Perhaps I identified with the experiences of individuals on the spectrum, but I don’t think I realized that at the time. I just found the subject fascinating.

It wasn’t until grad school, after I was asked if I ever wondered about being on the autism spectrum, that I started to consider the possibility that I was autistic. I have a bachelor’s degree in psychology, so my first concern was that I’d somehow convinced myself that I was autistic: “What if I have psych major syndrome?” (like medical student syndrome – when med students become convinced they’ve contracted the ailments discussed in class – but for mental health conditions).  I called my friend who was a special education (SPED) graduate student while I was in undergrad.

Me: When you first met me as a freshman, did you ever wonder if I had Asperger syndrome?

SPED Friend: That thought crossed my mind, but I noticed how well you got along with the students I mentored, so it didn’t really matter.

During the spring of 2013, I read everything I could find about the experiences of autistic women, starting with Rudy Simone’s books and later finding autistic adults’ blogs. That was also my first semester in the PhD program. As I read about autistic adults’ experiences, I suppose I was weighing them against my own. I remember talking with my SPED friend and her noticing I seemed less afraid of identifying with the Asperger label.

It was a strange time because from reading the academic literature, I knew Asperger syndrome would be absorbed into the autism spectrum that summer. What would I call myself then? I settled on Aspergirl — it was safe, perhaps because it was never a clinical label. It was a portmanteau (Asperger + girl) created by another autistic woman. I kept writing for myself, while I read about the experiences of autistic young adults in my coursework.

This summer, both of my research projects concern the social-emotional experiences of autistic women. When asked how my research interests developed, I’m running out of  ways to allude to my autistic self. At most, I can mention my friends with Aspergers or how I identify with this population when I talk with fellow educational researchers. I wonder if it would be easier to be ‘out’ (of my autism closet) if I had a clinical diagnosis.

There’s one person in my department — my PhD mentor — who knows I’m autistic. She has been amazingly supportive, but sometimes I imagine what it would be like if I could openly acknowledge this part of myself.

“I am an autistic woman whose research is directly informed by her lived experiences.” Now if only I could say that aloud more often.

Polaroids sent from the past

polaroid by ed__209

polaroid of polaroid by ed__209 (via Flickr: http://goo.gl/OsKH32, Creative Commons – Attribution, Noncommercial)

As I made the phone call to my childhood pastor, I had a series of questions handwritten in the notebook sitting beside me on the plastic kitchen table:

How did our family look to you? What roles did mom and dad play — especially in context of what you knew? To what extent (if any) did you suspect familial discord — why or why not? What were your perceptions of me growing up — of our family, of mom?

I had emailed pastor the previous week, asking if he’d be willing to have a conversation about my experiences in his congregation while we attended there. I told my therapist a few weeks prior that I was dealing with familial grief as I tried to make sense of my childhood narrative. I wondered if anyone outside my family noticed that we were troubled. I’ve long since acknowledged that my parents did what they could to take care of us, but at the same time there’s a vague sadness, sometimes frustration, with that past.

I’m writing because I’ve wondered about some of my experiences back then; since we moved, I kept up with few people from that time in my life. Growing up, my family was rather insular, so since undergrad, I’ve been trying to make sense of my childhood and early adolescence.

When we began the conversation, I acknowledged my fears about making that phone call — how I didn’t want him to think I was asking him to betray my parents’ confidence, if they’d shared anything with him. I just wondered about his impressions of our family. He answered some of my questions, and I discussed my life now — finishing undergrad and beginning grad school, how I promised myself I’d see a therapist when I started college (how it helped), and connecting with like-minded women who validated my story.

I felt surprisingly safe self-disclosing and took some notes. His recollections of me were relatively consistent with my own memories of being a “quiet, shy, self-conscious” girl (who I recognize was also pretty anxious). He said I was bright and intuitive even then, and that he was proud of me. I felt affirmed by this process of further developing my internal narrative.

After the phone call ended, I messaged a friend of mine who knew about the situation — the one who encouraged me, saying, “This is so brave and cool of you. I feel like I need to tell you that you astound me with your courage on a regular basis.” I remember sitting on my floor couch reading her message before making the call — I reminded myself that I was brave in my attempts to fill in some of my childhood recollections.

Memory isn’t static. It’s dynamic. Ultimately we are the ones shaping our own narratives as we ponder details consistent with our stories and neglect those that don’t seem to fit. I’m learning to honor the emotional truth of my story, especially how it still reverberates with me now.

I feel as if I’m making a timeline of Polaroids sent from the past, but I’m waiting for the blurriness of the images to become a scene that makes sense. I long for a coherent narrative and maybe in the process, I’m arranging these images into a recognizable whole. My friend says, “It’s like you’re uncovering your story.” Maybe I’m creating it, too.

Coaching Along the Spectrum

Because nobody is an island.

The Little Explorers Activity Club CIC

Autism Friendly Holidays & Pony Rides

sleep wake hope and then

life as an autistic (former) grad student

Craig Nash

AT THE INTERSECTION OF BEAUTY, BEER, HOPE AND HEARTACHE

piper grace lynn

writer. feminist. human advocate.

recoveringmamablog

life, love, kiddos, recovery

Seeing Double, Understanding Autism

raising awareness and understanding the perspectives of children and adults on the autism spectrum

Eclectic Autistic

Days in the life of an adult on the spectrum

Let's Queer Things Up!

Talking mental health with Sam Dylan Finch.

hayle williams

If you are afraid to write it, that's a good sign. I suppose you know you're writing the truth when you're terrified. [Yrsa Daley-Ward]

distractedblog

Just another WordPress.com site