Ask an Aspergirl

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

Tag: self-doubt

Path made by walking

This path made by walking can be utterly terrifying. She says I’m a pioneer, but my brain jumps to the Oregon Trail game I played at the library. So many lost in the journey.

This path is undefined — how do I describe what I want — what I only recently discovered — when I still have trouble saying these words in a public setting. Standing out brought me here — unable to hide what I could not do. I forged a new path, not sure where I was going, but better than here.

A pioneer without a map — looking for a destination in the land of I don’t know — trying to deconstruct that statement — to feel in all of the thinking.

What if you were that person — the one described in a narrative of resourcefulness and bravery?

I don’t feel brave. But I am here. A character in search of a narrator. Could you just tell me what to do? Impose a setting upon me where I can live in peace.

This in-between is scary. Is there safety in not knowing — trying to define myself with adjectives I’m learning to apply. To see myself in motion. No one is a static character. I want to find my own script — to place words over this blank page of what next.

When I can only feel pressure to be sure of what now — this path made by walking is continuing on. By faith, she… these old words buried in that growing up space.

This path is here — in the uncertain places she walks, trying to hear her own voice in the noise of what she fears is already known. I walk a path undefined — with tiny, uncertain steps, becoming what I don’t know yet.

I don’t recognize this path, but I will. I live in not yet — an unforged will be is coming. I keep walking slowly into this becoming.

Sometimes feelings are hard.

This is me sitting in the waiting room, moving my Tangle back and forth as Aloe Blacc plays from my headphones, then switching to sketching a tree in my poetry notebook. I stim and intentionally breathe. The psychiatrist is running late and I’m already nervous about seeing this new clinician. I got a phone call the previous week that my former nurse practitioner was no longer seeing patients. And so I sit there, waiting to be called back, tired and anxious.

I suppose worn isn’t an emotional state, but when I’m feeling utterly exhausted, describing my feelings becomes increasingly difficult. These experiences are too abstract. Dialogues about internal states become like a parlor game — describe the external cues and guess the feeling. I notice my shallow breathing and feeling distant, and then conclude I’m probably anxious.

But how anxious or for how long have I felt this way? I don’t know. Those questions are harder to answer. Sitting across from this unfamiliar clinician, I feel like I should have an answer. I try to come prepared for meetings like this — with notes on legal sheets of meds taken and how my body felt (tired mostly — but that feels so vague). In these moments I feel complicated, wishing I could see the histories taken by previous clinicians, those attempting to describe my mental state. I have trouble trusting myself — my report of what happened and what is happening.

I’m afraid my descriptions of my internal states — of myself — will be inadequate. That they will result in a treatment that only sets me further back. I fear being misunderstood — that my words will fail to say what I need, what would help. I rely on someone outside myself to interpret this narrative — to see the patterns I’m trying to describe. My tiredness is a frustrating distraction from the present moment. I don’t feel enough.

I suppose that’s an ongoing theme in my narrative. These not enough feelings that linger. Not enough sleep, not enough words, not enough support, not enough direction, and not enough time. That my actions will leave a space for failure. I find as I get closer to dissertation, these fears of completion grow stronger. What happens if what I present is rejected? What if I meet these requirements and I still feel stuck? These questions don’t feel like they’re going anywhere.

I wish I knew where these questions were coming from. I can only ponder. I know safety is an unfamiliar feeling for me — that internalized sense of resolution never arrived. It was outside my frame of reference growing up; I feel like I’ve been trying to create that sense of security ever since.

This is usually the part of my blog posts where I’ve reached a conclusion or at least a stopping point. I have a harder time just writing into the ambiguity. Perhaps that’s my wound — the kind my writing group facilitator encourages us to write into. To say, I don’t know, and sit with these words is so hard. In these moments, I feel lacking. I am a rough draft — both in-progress and good enough. And so I keep writing…

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.

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.

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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