Ask an Aspergirl

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

Tag: labels

What’s in a name (or diagnostic label: 299.00 and 300.02)

Hi my name is… like those plainly typed paper badges where I scrawl myself into that adhesive space. Hi, my name is pen name — hi, my name is disability — expecting to be corrected for identifying with myself; that isn’t proper.

But names are identity and backstory and narrative — the interconnected tissue of my being. When I stop pretending to be anyone but myself, I am named. I’ve given myself a series of labels — not the sticky kind — the ones that come with diagnostic codes and insurance billings.

I’ve had names bequeathed upon me — quirky, autistic, wordy, enough, creative, becoming, herself, myself. But to name myself enough, and then to repeat it, feels powerful. To claim enough space for myself — identities that were mine only out of recognition, then declaration.

Perhaps a name is a story — my story — the one that begins in a cramped room with two chairs and I. Where I felt inadequate, incomplete, lacking. Missing pieces of a puzzle I had not discovered. Then throwing away the unrecognizable picture on the box. Recreating images in cut-up paper and magic markers. We start in the middle, only to find myself in loop — in between — but further from the beginning.

These words — the ones I share in illuminating dialogues — are magic. I recognize the space your child occupies. I can name it because I live a few blocks down. With a map covered in landmarks and identifying places. I don’t know what they are thinking and feeling, but I can share the value of my own story and marvel in the recognition.

To know, or feel rather, that the most painful spaces matter — where I occupy and never leave — with the figures I never invited. I am a guide, but also a traveler. We become in a space we’ve walked lengthy times, but never named or fully recognized. I am… and so are you… and in that is a community I never expected to find… where both you and I belong; a wavelength undiscovered.

Where time stretches into narrative space into naming and being; experiencing and reliving; where identities and persons blend together into place unknown. Where we find ourselves together.

Here.
Is.
Enough.

In this space of now and not yet, we name ourselves and live these experiences. Merely being here now; in recognition of selves, we story on.

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.

On labeling myself and wondering why I feel silly

Of course they are

“So that happened. I felt scattered all over the floor by the end of session:  ‘I just want someone to acknowledge that these things I’m experiencing are actually things!’ And of course they are.” <– text to a friend sent post-therapy

“In the space between weird and clinical label is a lot of self-acceptance and working through these hard moments (very real things).” <– note to self

Silly is dismissive. Silly says conciliatory things like “I’m sorry you feel that way.” And yet sometimes I feel silly when I label myself. I need to hear someone outside my own head say, “I think you’re right. The characteristics you’re describing are consistent with the experiences of an autistic person. You’re autistic.”

Last week, I finally talked with my therapist about realizing I’m an autistic woman and wondering what to do with that information.

“I hear your experiences. I know they’re real, even though I’m not here to label you. But I’m here, and we’ll talk. I want to honor your narrative and self-definitions”

“What if someone in this room could tell you who you are — because you can. I see how hard you’re working to understand yourself.”

As I described the ASD traits I’d seen in myself and how I felt like I had to prove I was autistic, my therapist noticed I was growing increasingly anxious. I looked down at my shaking hands, reminded that my body tends to know I’m anxious long before my brain does. I’ve been seeing the same therapist for long enough to know that she won’t invalidate my experiences and yet finding the words to have this conversation felt terrifying.

My sister was one of the few witnesses to my growing up since my parents were distracted by their own issues. She lovingly reminds me that I was a quirky kid who wore a lot of sweater vests and used unusually large words for my age. I wonder if my autistic girlhood went largely unnoticed.

Maybe I’m waiting for someone else to confirm these experiences — to hear my narrative and help me make sense of it. Part of me still worries that I’ve created an unnecessarily elaborate explanation for why I have trouble fitting in with others. But last session, I asked my therapist to piece together a list of clinicians who evaluate adults for ASD. I think I’m ready to see where this process goes, even though it’s scary.

I’m learning to trust my own thoughts and feelings as I find the words to describe myself. They are real and certainly not silly.

In search of a coherent narrative

But seriously legal pads are awesome

“But seriously legal pads are awesome” by Derek Schnake (CC BY-NC-SA 2.0)

I can picture myself in a series of spaces in which salient conversations happened:

Consultation room where I pondered taking anxiety medication
Steps outside the local cafe where I grieved for lost things
Office where I felt blindsided by expectations I couldn’t meet
Between two chairs where I alluded to the possibility of being an autistic woman

I suppose I’m in search of a coherent narrative. I know what happened and when, but the hows and whys are much harder to understand. When I blog or write poems about these perplexing, often emotionally fraught, scenes, I’m recreating what happened. Maybe I’m looking for patterns in the events that led up to that moment and the ones that followed.

Lately I’ve been making lists about why I think I’m autistic (or to use the DSM-5 verbiage — meet criteria for autism spectrum disorder). I’m not sure who I’m trying to convince that I’m autistic — myself perhaps or the imagined clinician who asks why no one noticed me earlier. I remember talking with my previous psychiatrist:

“So it says here [in your chart] that you’re concerned about having Asperger syndrome.” “I wouldn’t say I’m concerned,” I reply. “It just seems like a strong possibility in light of my experiences.”

“So why pursue an ASD diagnosis in your mid-20s?” I ask myself. I’m still not sure if I have a concrete answer. Perhaps so I could request workplace accommodations in the future. That sounds reasonable, right? But it’s more than that.  I’ve been trying to account for my struggles at work and social settings that remain unexplained by GAD or longstanding familial conflict.

“If you’ve managed for this long, maybe you don’t need a diagnosis.” “Depends how you define managing,” I’d counter. “I started a blog as a repository for the complicated thoughts and feelings I had about someone else labeling me — an armchair diagnosis, couched in an open question. I left my master’s program because I couldn’t adapt to its ever-changing professional environment. I thought there was something wrong with me. Now I think there’s something different about me. I would like to know what that is. I suspect it’s autism.”

I’ve been trying to talk with people in my offline life about wanting to be autistic. Mostly this has manifested as references to my previous posts sent in emails or carefully written on legal sheets (1) and forwarded links to other autistic women’s stories (2, 3). I want my close friends and mentors to understand my thought process, but it’s hard to find audible words. Instead I’m relying on written ones to serve as conversational bridges. When the words do come, they arrive in floods I can’t seem to contain.

“So what do you want to do with these questions of identity?” my therapist asked the last time we talked. At that point, I didn’t know how to answer. Maybe I still don’t, but as I talk at/with friends about this search for a coherent narrative, I’d like to explore the possibility that being autistic is part of my story.

  1. https://askanaspergirl.wordpress.com/2014/04/24/overlapping-overarching-narratives
  2. http://notesoncrazy.com/2013/07/i-think-i-need-this/
  3. http://autistwriter.wordpress.com/2012/05/04/cara/

Overlapping, overarching narratives

I’ve been trying to have this conversation with my therapist for a while now: “Do you think I’m autistic? I remember when the possibility first entered my mind, it was because someone else brought it up.” “Do you think you’re on the spectrum?” “I don’t know,” I replied and then spent that spring semester researching the possibility. I called a friend from undergrad whose background was in special education.

“The question is not whether you have autism or are on the autism spectrum, but how you understand yourself and find a place that’s the best fit for you.”

I remember her saying to take all the time I needed with that process and not feel pressured to place myself in any sort of box. She mentioned how I didn’t sound so scared anymore about the possibility of being autistic. As I read books and essays about autistic women’s experiences, they resonated with my own. I made a series of Venn diagrams and journaled as I attempted to make sense of how these overarching narratives fit together.

It's in the overlap

I remember looking for the right words to describe myself — “Aspergirl, quirky, or socially different.” I didn’t want to call myself autistic if I didn’t meet the diagnostic criteria (which at that point would have been under DSM-IV, although I knew Aspergers would be absorbed into the autism spectrum that summer). Aspergirl was a self-identifier that seemed consistent with my experiences of not quite fitting and missing social nuances. It was a label noting difference, not deficit.

I’ve lived in this overarching narrative — that I was an Aspergirl (probably autistic young woman – but only self-identified) — for the last year or so. I found a community of like-minded women who shared their lives through blog entries and tweets. And yet part of me wonders if I’m actually autistic — maybe I’m just anxious, so I feel awkward in social situations and miss others’ cues because I can’t see past myself.

Imagined conversation:

“Do you think I’m autistic? You’d mentioned when I first started seeing you that my social confusion could just be due to my anxiety, but why does that identity resonate with me?”

“I can’t tell you who you are. We could talk about autistic traits, and you’re familiar with the diagnostic criteria. But I think you’re trying to figure out what being autistic means — to you, your experience, who you’ll be, in the becoming.”

I’m reminded of those Venn diagrams covered with notes about my interpersonal history and longstanding observations. It’s in the overlap where things make sense — familial trauma, Aspergirl self, and generalized anxiety intermingle on a sheet of notebook paper.

“I felt like someone had to call me that for it to be so — to claim that identity [as a poet]. I have the authority to claim that identity for myself.” ~ writing group facilitator on labeling oneself

“If you want to further explore the possibility that you’re on the autism spectrum, there’s a clinic nearby campus where I can refer you — but I also don’t want you to feel limited by a label. Remember this is a sacred space where you’re free to determine who you are.”

So for now, this is where I am, pondering these overlapping, overarching narratives, knowing that identity isn’t static.

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