Ask an Aspergirl

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

Category: Aspergirl self

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.

Intuitive responses and self-consciousness

in·tu·i·tive (adjective)

/inˈt(y)o͞oitiv/

  1. using or based on what one feels to be true even without conscious reasoning; instinctive.

Synonyms: instinctive, instinctual; innate, inborn, inherent, natural, congenital; unconscious, subconscious,right-brained, involuntary, visceral [1]

Sometimes I have trouble picking up on social nuances: I may overlook when someone wants to switch topics or needs to leave because I’m monologuing. I’ll run through mental flowcharts in my head when I’m figuring out whether a statement seems relevant (or for that matter socially appropriate — will they judge me if I say _____ ). Maybe I’m afraid of saying the wrong thing; maybe I have no idea what to say. I use scripted dialogue in unfamiliar social settings and then inevitably lapse into pop culture references — maybe I need footnotes.

My mom says as a kid when I was having trouble with a task, I said, “It’s hard for me,” rather than “I can’t do it.” Maybe that’s why I’ve developed workaround for dealing with social confusion. I make sense of social situations by looking for patterns, developing analogs, and creating rules. I impose structure on ambiguous scenarios; I ask for examples and further explanation when I can. Sometimes I’ll ask close friends or my therapist for a script when I’m at a loss for words.

I’ve deliberately learned to manage my anxiety levels. Maybe some kids naturally learn to calm themselves as stressful situations resolve, but growing up, I lived with uncertainties. My body knew I was anxious before my brain did. I could feel my anxieties in my shoulders, but couldn’t identity the accompanying emotional experience. I knew I worried a lot, but I wasn’t sure how to lessen the radio static.

There’s a self-consciousness that comes with knowing that some aspects of one’s being don’t come intuitively. I’ll wonder if I’m the only person who talks with herself in 2nd person to self-soothe: “This scary, but you’ll manage. You can do this because ____. You know that. I’m proud of you for doing ______.” I’ll realize I’ve created elaborate social rules in an attempt to understand how to behave in novel situations.

Maybe engaging in tasks that feel intuitive can be a form of self-care. My self-care consists of comforting rituals and routines (Aspergirl R&R, as Rudy Simone would say): My apartment sometimes serves as my hide cave. It’s quiet and dark; after a long day of managing anxieties and others’ expectations, I’ll crash in front of my computer to read blogs or watch Walking Dead. I take the bus to the local cafe a few days a week because the people there are kind and the pie is delicious. I’m learning to sleep when I’m tired and seek quiet when I desperately need it.

I’m asking myself, “What do I need at this moment?” Sometimes my responses include realizations that I need help, but have no idea how to ask for it. Help-seeking makes me feel vulnerable and burdensome. I feel strange talking myself through anxiety-provoking situations or taking frequent breaks when addressing stressful tasks. “But other people don’t have to do this!” I muse frustratedly.

Maybe they do — a friend reminded me, “You’re judging your insides based on other people’s outsides.” I’m listening to my needs and seeking feedback from trusted people. I wonder if  I’ll become kinder to myself in the process.

  1. Definition from Google (used “define: word” function) – https://www.google.com/#q=define:+intuitive

Cultivating safe spaces

Community hugIt’s been a little over a year since the blog began, or rather I began the blog. I’ve moved from jotting thoughts (and sometimes prayers) in well-hidden notebooks — thrown behind bookstacks or on high shelves — to sharing my poetry at open mikes. It has been quite the year.

When I considered the possibility I could be an Aspergirl — wondering what that meant, then gradually embracing that part of myself: I met fellow Aspergirl bloggers through reading and commenting in their online spaces. I’m feeling increasingly connected to other people whose stories are relatable.

When I began to read these bits of my narrative aloud — honoring my backstory and meeting like-minded women:  I became a regular at the neighborhood coffeehouse (barista friend says I’m  “earl grey latte girl”) and the local cafe with the good listening proprietor. I’m gradually unveiling my narrative in these spaces — “This is me and what I’m experiencing.”  I found a community of women writers through a flyer posted at that coffeehouse.

This has been a year of cultivating safe spaces and becoming (not finding) myself. I’m practicing self-disclosure and measured vulnerability: “right place, right time, right person” considerations in mind. This has been a year of coming back to myself as I’ve been learning to remain present, even as I’m waiting for waves of anxiety to pass — I’m learning to sit with them.

A little over a year ago, my chaplain friend suggested I start a blog. “Why don’t you call it, Ask an Aspergirl,” she said. I was a bit skeptical at first: “So I’m telling strangers on the internet about the worrisome and confusing things I’m experiencing? That seems weird.” And yet, I remembered telling my therapist, the previous semester, how I had few social supports, so she introduced me to chaplain friend and suggested I volunteer at the animal shelter. I’d been experimenting with social connections — maybe I could muddle through my thoughts via blogging — “It’s like curated journaling,” I thought.

I was sitting at the local cafe, waiting for a friend joining me for lunch, and remarked to the proprietor, “I have people now; when did this happen?” It was a wonderful feeling, but also unfamiliar. I know how to linger at a well-lit desk with a book and share thoughts with someone in line. It’s harder to maintain relationships. I forget people want me around until they say those exact words.

So dear readers, I’m reminded of a statement the cafe proprietor made as I think about my finding community this year: “You’d be surprised that most people you meet are lovely, if you give them a chance.” I’m glad we could have this conversation together.

Slipping away and finding one’s way back

Stimming and Grounding

Comparing and contrasting how people use and perceive these techniques

Sometimes I feel like I’m slipping away when my worries overwhelm me. My brain is still sitting in my seat, but my mind feels distant —  maybe it’s mild dissociation — I don’t lose time, but I don’t feel present either. I attempted to describe this experience when I wrote Enough:

It’s like a wave, the story often starts, I sit in it, it passes eventually, never entirely overwhelming me — but disconcerting nonetheless.

Prior to entering therapy, I had trouble identifying this experience. I noticed during dance aerobics classes, sometimes my mind seemed elsewhere, and I would lose track of my steps. I’d get stuck in worry loops, then will myself back to the present moment (“You’ll fall over if you try to worry and move simultaneously”). In class, I made lists of ways to manage worrisome situations, so I could return my attention to the lecture. I still create lists in the margins of my notebooks; sometimes I draw trees, but these days my jottings also include unfinished poems and recalled affirmations.

My therapist noticed I became distant when we talked about painful topics. She taught me grounding techniques when my worries seemed overwhelming, and I felt as if I was slipping away. To ground yourself, you focus on novel, sensory stimuli — what’s in your surroundings that you can see and touch (1). Therapist lady handed me a rock  (from one of those small office fountains), and I traced its crevices with my fingers as I described what it felt like. I came back gradually, and we learned to help me return to the present moment.

As I learned to remain present, even when I felt ridiculously anxious, I noticed that I stim. I wondered why this was happening; I didn’t know I stimmed and yet I found myself clapping happily in response to good news or tapping my fingers together when I was feeling anxious. I still practice grounding when my anxiety heightens: I rub my fingers against textured surfaces or place my hands near my diaphram to feel my breathing. For me, stimming and grounding serve similar functions — they help me self-soothe and/or respond to evocative scenarios.

According to the editors of The Stimming Checklist,  “Often the cause of a stim is some need for self-regulation, or a way to feel in control of ourselves and our experiences” (2). Some people stim to regulate their emotional or sensory experiences. I stim to manage my anxieties (e.g., tapping slightly or rubbing my fingers together) and sometimes when I’m distracted by background noise. I find my own rhythm by tapping my fingers or toes, so that I can focus on present tasks.

We all stim sometimes — if we remember stimming includes those small movements that get us through the day — tapping pencils or feet, fidgeting with jewelery, clicking pens, twirling hair, and doodling during lectures are some examples. The Stimming Checklist has an array of stims that people submitted (3). There are stims for a variety of emotional states and scenarios. Anabellistic (on her YouTube channel, MainJelly) created a video of subtle stims people could do in a classroom to stay engaged (4). We stim because it works.

So why talk about stimming and grounding in the same blog post, you might ask, dear readers. I think there are a lot of similarities between stimming and grounding (as shown in the Venn diagram I made – penchant for charts continues), but the social contexts in which these behaviors occur differ. I intentionally learned to ground when I was feeling overwhelmed; stimming seemingly happened to me — and yet, both techniques are useful. If I look weird plopping down in the middle of things to slowly breathe or tapping my fingers as I walk somewhere, that’s okay.

  1. Automatic Reactions and Grounding Techniques — http://joyproject.org/overcoming/grounding.html
  2. So What IS Stimming? Definition from The Stimming Checklist — http://what-is-stimming.org/so-what-is-stimming/
  3. The Stimming Checklist — http://what-is-stimming.org/
  4. Way-To-Stim Wednesday: Classroom (from MainJelly’s YouTube channel) — http://youtu.be/hAsOTE29i80
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