Ask an Aspergirl

Pondering popular culture, generalized anxiety, and being Autistic

In the first sips of coffee

Until she walked out the door, the day had barely started — it was on pause in the darkness of her apartment; coffee mug left beside a screen of other people’s lives. In this cave-like space, the world remains at bay, email unchecked, lights low — eggs remembered via the light above.

She sits somewhere between worry and doing — alarm reminding her to “take her damn meds” rings loudly. Dose charted, day continues. Behind a screen of retweets and favorites, a series of hashtags, is a collection of stories; what #TraumaMeans, #OverloadMeans. Stories of not-entirely-strangers who know more about their lives than their neighbors do.

Until she walked out the door, into them sunlight, only now remains. Though future and past attempt to creep in — fears of support networks fading, the uncompleted deadlines, and the uncontrollable in-between. But this was now — in the first sips of coffee, in the barely awake, trying not to plan the day away.

She sits with the lives of people she’s never met — in sentence-long summaries revealing more than an hour of conversation. What would it be like to not talk around, to state directly? To live with, to exist beside this lingering fear of what might be? What might be is too close and too far away. She is here in-between.

Before she steps through the morning, she is here — bite to fork, fork to mouth. Rising for more coffee, to return to a seated position — wishing she could stay here; waiting for the day to begin.

Before anything happens, there is worry. As if it appeared rather than was self-created. She is worry. In the waiting for what might be, in the hope of continuing to try, imagining a what could be, will be, in the terrifying not yet. The being with these fears of leaving and being left. Of wondering what then and finding herself here in the wondering.

In the conversations with herself of “Is this supposed to be what I’m doing.” Yet I am here now. Not entirely sure where I’m going, but stepping forward, only to look back. You are here — like those signs in the mall orienting you to a dizzying space. In preparation for what’s to come, I want to experience now — to anticipate a will be for women like me and then create it.

This living in-between is the hardest space. The fear of not enough until it is tolerable. To be in this space of not knowing and fearing is exhausting. To talk through worry loops and the few knowns.

You are here. Waiting for a later being slowly created for women like you, for you, by you, and this work is disorienting. Not knowing how you fit, into a space of learned recognition. This is now. In cups of coffee and brief encouragements between the blank spaces. This is hope living between the known and will be.

This is enough — to sit with these lingering fears and coming acceptance. Knowing feels impossible, as I anticipate a murky hope.

Creating mental flowcharts and colorful maps for disclosing disability

I remember making a color-coded map of whom I could trust in my department and sharing it with my advisor. It was scrawled in pen, categorized into red (unsafe or ineffective), orange (unhelpful or neutral), and green (safe to disclose) areas. She responded positively, saying that my map was accurately drawn and surprisingly descriptive. We talked about how I’d managed to identify safe people — those with whom I felt comfortable sharing my backstory.

I don’t like passing. It requires energy that already feels depleted. It makes me feel like I’m contributing to ableist attitudes, the implicit assumptions that people like me don’t exist in PhD programs or conduct developmental disability research. Nevertheless, passing feels like safety; I avoid the gaze of people who refuse to acknowledge both my strengths and impairments, those who still believe in the high functioning vs. low functioning dichotomy.

I’ve grown familiar with creating another kind of narrative: A vaguely described chronic health condition that distracts from my graduate studies (read as: The overlap between generalized anxiety and autism, when my social filter collapses and my executive dysfunction is apparent).

My earliest forms of disclosure were elaborate metaphors describing enough anxiety to power a small city. I waited for the visible discomfort or displays of acceptance that followed these conversations. Later I learned to listen for personal narratives of disability — those who alluded to lived experiences with mental health conditions or those whose stories contained gaps, maybe paragraphs they assumed others would find overwhelming.

I suppose I’ve created mental flowcharts for disclosure as a kind of sensemaking process. A way to manage the fear of coming out to others about being Autistic, when I sometimes doubt myself. I’m reminded of Nattily’s post about wanting to be autistic — how that response would be odd for individuals without spectrum traits.

Finding patterns and labeling things are inherently comforting acts for me. To say, this is who I am, who I’ve always been, why I struggle to do seemingly easy tasks and excel at seemingly difficult ones. This is my narrative.

This Monday afternoon and Tuesday morning, I meet with the autism specialist in town, the lady who did my screening a few months ago during our consultation. I need her to see the Autistic traits that will impair my performance duing Oral Exams, but also brought me to academia. I need her to recognize my gifts and struggles, to document the extent of my need for accommodations. I need the autism specialist to see me.

A friend of mine invited me to submit an article about Autism Acceptance Month for her community newsletter. I tried writing from an academic perspective, to maintain a sense of professional distance, but couldn’t seem to find the words. Then I shifted into my own account of being Autistic in academia and found my narrative — in preface written and poetry shared.

Voldemorty things: On giving up shame for Lent

Lenten season ended yesterday. This year, I gave up shame (or more specifically, internalized ableism – the self-imposed rules for not appearing disabled and feeling badly for needing help, the stories we hear about what #HighFunctioningMeans). This practice felt like praying for patience — an invitation to a universe ready to provide plenty of opportunities to be patient. I’m learning to recognize these acts of self-shaming, and resultantly have experienced meta-shame (being ashamed of shame — wishing I could just get over myself already).

My grandmother died in early February. I’ve alluded to familial grief before — the loss of abstractions I needed: safety, calm at home, routines, and people to help me label my feelings. I’ve cobbled together support systems of mental health professionals, prescribing clinicians, and a chaplain lady. Grandmother was remarkable and helped me find a security I barely knew before living with my grandparents as a high school freshman. She mothered me — another Mrs. W in a longer narrative of women who cared for me emotionally when traditional figures couldn’t.

The Friday before spring break, I found myself sitting on the floor of the School of Education, trying to calm myself (with the help of an undergrad I’d just met and proceeded to talk to/at her) and to remember what breathing deeply felt like. She was pre-med and remarkably good at staying calm when I was visibly anxious. It felt like hours; she decided to skip class to sit with me. I was apologetic. She kept reminding me that it was okay. I was okay.

Since then I’ve tried two sets of anxiety medication: First clonazepam + generic Wellbutrin, then tapered off when my therapist (Dr. W.) remembered the former led to depressive symptoms a few summers ago. The bupropion seemed to make me ragey — at ableist f-cks and people who heightened my shame.

In response, Dr. W introduced me to the psychiatric nurse practitioner (NP H.) on campus, who wrote me a prescription for buspirone (generic Buspar, a 2-3X per day anxiolytic). I left NP H’s office with a script and detailed instructions for titrating my anxiety meds. A kind undergrad passing by health services helped me reset my medication alarms. I felt simultaneously apologetic and grateful.

I’ve taken the therapeutic dose of meds for the last week-and-a-half. The buspirone seems to be helping (she said hesitantly for fear it might attack like every med before it). I’m starting to feel better — calmer, spending fewer afternoons on floors, remembering to pack my meds case and stim toys (Tangles, coloring books, notebooks, and crayons).

I’ve learned to let other people take care of me over the past few months. These experiences are terrifying. “I gave up shame for Lent” has been my refrain since this season began. Even when my supervisors at work couldn’t acknowledge that my inability to pass explained my recently poor job performance.

I gave up shame for Lent. I needed to choose myself, every bit of self-care I could practice, over perfect performance at work. I was late, overly talkative, but still very much myself — more so than usual, and people began to worry. I’ve passed well — quirky, rather than Autistic. I’m saddened and angry that passing is survival for people like me.

I wish people were more patient when I’m visibly struggling. I wanted to curse at my performance review — on giving others their time and space. What about me? My needs for time and space are ignored too, I wanted to declare. Ableist f-cks were the words I suppressed. Aloud, I spoke of getting better: I am X; I’ve tried Y; how can you help via Z. I appeared contrite — apologizing for my atypically expressed grief, Autistic social norms, and the scatteredness of anxieties. I apologized for me, for being unable to hide my struggles. Sorry, not sorry.

I’m learning to slow down to feel better, even at the expense of missed deadlines and confused looks from others. This is what managing looks like: Stimming and grounding, making meds notes to share with NP H., and talking about mental health like it’s the weather. Self-care is acknowledging my own kind of normal and letting trusted people into this narrative. My meds alarm goes off three times a day and I feel ripples of shame at my feet. I am anxious enough for meds. My friend reminds me, “Pill shaming is yet another form of internalized ableism.” I believe her.

These are the #VoldemortyThings, what shall not be named for fear of the conversations and looks that will follow. The not understanding because they have never experienced these kinds of normal. My normal. I’m grateful for those who know how to hold space for the things we would rather leave unnamed.

The baristas who listen well by nodding and saying the reassurances I am waiting to internalize. The friends who take me home after I’ve had a meltdown at the cafe. The proprietors who ask me to categorize their tea box. These are “the nuances and anomalies, the things I assume only accessorize my day.” This is how I’m coping well enough. #ThisIsWhy

On Being Autistic In Academia

askanaspergirl:

I almost never reblog things, but Stella has amazing advice for Autistic grad students such as myself. So much coping tech and normalizing — helps so much.

Originally posted on Conditionally Accepted:

AutismIn this guest blog post, Stella S. (a pseudonym) shares her experiences as an autistic academic, and offers advice for other autistic scholars (and everyone else) on communication, networking, and navigating academia while being visibly different.

The Impact Of Being Autistic In Academia

I’m autistic.

There, I said it in an academic space for the first time and even though I am writing under a pseudonym, it feels good. I was diagnosed later in life, after I became a PhD researcher (which I still am). Just because it took longer for me to know does not mean that you should call me “high-functioning” or “mild” or any other word that is supposed to make you feel better about my autism. I only identify as “autistic,” thank you very much.

I don’t personally know anyone in academia who is openly autistic. Due to this, I find it hard sometimes to make…

View original 1,318 more words

Songs of disconnection and reconnection

Dear calves, you move me place-to-place — steadying me as I feel like shaking, am shaking, as body is here — brain across town. You linger with me as I hop and tap. Learning to remain here — pieces of me sustaining oneself.

Body and brain in disconnect, we find ourselves here — in the in-between. I fade, you see. Blonde eyelashes to block out the noise of outside — inside. Too close and too far away at the same time — trying to prevent an imminent shutdown. Letting it happen.

I wrap my arms around my diaphragm, trying to remember how to breathe, then sing instead. Keeping time in 4/4, 8/8, 16ths with my boots — shoes touch earth. Remembering how to ground.

Fading and remaining here — feeling in-between the tangles — finding myself here again. In the fear. In the death grip of pen to paper, I describe what I think happens when I fade away — both too far and too close.

Self-acceptance is letting myself go — practicing in the in-between. Letting myself just be there. In the fading being. Fitting. Belonging. Remembering to breathe, slowly and deeply.

You are here in this place. I am here in this place, she reassured herself.

It’s a mild form of dissociation, she said. I don’t lose time, so much as fade away in fear — to lose control is terrifying. To let body and mind part from utter exhaustion, to accept the fading feels like a loss.

Not me, yet me entirely; in this fear, I remain drawn back in rhythm and scripted dialogues — of a future calmer. Then now, of going on and then stopping entirely — pausing because she has no other option but to wait with a body betrayed — as her knees shake and mind runs.

She is here. Waiting with her breath — voice beside her.

The only way out of this is acceptance. Going through and eventually arriving at a place between utter exhaustion and latent calm.

Seeking narrative and secondary characters

Last week, I found myself in my therapist’s office, trying to explain why oral exams are utterly terrifying. These comps feel like a manifestation of my disabilities — the delayed auditory processing and pragmatic language impairments — not a demonstration of everything I’ve learned in the PhD program. There’s a gap between my written and oral language, between the thoughts in my head and what I’m able to express — especially when I get anxious. In these moments, I feel so lost — stuck in a space I’m only beginning to understand.

I’m learning to be visibly Autistic and slowly finding allies in my department. The professors who will acknowledge their own vulnerabilities feel safest. In these conversations of invisible disabilities, I feel less alone. We reach a point in these talks when I realize I could continue to remain at a professional distance — talking about my research, not me — instead of showing myself. It feels like a painful kind of show-and-tell. These are my struggles; I’m learning to live with them. How can you help?

The few professors I’ve told I’m autistic, those with whom I’ve shared my narrative, have been surprisingly supportive. So far, my allies consist of special education professors and a statistics professor. In these offices, I feel heard — like what I’m saying makes sense, that it is true, that the supports I’ve requested are reasonable. They are making room for me.

This past week has been a series of phone calls and meetings with helping professionals who will support me in the accommodations process for Orals. A few days ago, I had my intake interview with a student clinician at the University Assessment Center; I began the 4-6 week waiting process for an ASD evaluation. I met with the accommodations coordinator at Disability Services later that afternoon.

So how am I feeling in this flurry of scheduling and questions about how I know I’m Autistic? In between the waves of overwhelm is a sense of relief, a slow dissipation of fear. I remember sitting in the tiny conference room, with a round table, two chairs, and a whiteboard, being utterly terrified. Waiting for the phone to ring, readying myself for intake, I spread my notes and diagrams before me. This is me; this is my story; in 30 minutes, I will recall two years of manifested ASD traits. I felt I needed to defend my narrative; fearing I wouldn’t be believed, I presented a litany of evidence.

I can recite portions of that DSM-5 entry nearly from memory: when demands exceed the Autistic adults’ coping skills; this is when people like me fall apart. When we convince ourselves we are broken and wrong, developing shame as we learn to hide. Before we found there were others Iike us; we thought that we could get better, if we kept pushing ourselves.

For me, help-seeking is a recent practice. I’ve learned to send texts or show up familiar places when I’d much rather hermit. In these moments, I’m asking others to accept me in the midst of stuckness — in the shutdowns when I talk at a friend, trying to transfer the flood of words in my head to the space between us.

Self-acceptance is a strange process. I notice my quirks, the traits that make me noticeably Autistic, and feel so weird. Othered by a tendency to get lost in my thoughts and completely forget why I entered a space — forgetting about time and place entirely. Noticing shame doesn’t dispel it. But I’m learning to have these conversations that create space for myself. To check in with friends mid-monologue, to try not to apologize for who I am — my way of being in the world. It’s hard.

Sometime I don’t believe myself when I say I’m Autistic. Perhaps because I lived alone in this narrative for so long, not even able to claim it as mine. A story of finding workarounds and people like me in an ill-fitting context. To realize all of the reasons I struggled in clinical work are why I thrive in research. To let myself be odd. To stand in a crowd, amazed as the music of that evening’s concert surrounds us and the room is stimming. We move in the rhythm of that space.

I am learning to accept myself in community — to practice being proud and let others in to see my process. In the hurt of being myself, I am learning to let others support me. As I openly acknowledge that I had a shutdown earlier that day and let myself feel the surprising support that follows. I’m learning to cope, even though my circumstances are still exhausting at times. I’m passing less. I’m letting people help me. Perhaps in this interwoven narrative of why did no one notice is another strand: How to manage, even thrive now. And so, I keep practicing.

Professionalism and passing: When hiding is difficult

The personal is academic for me. My graduate studies are directly informed by my Autistic experience; as I shift pronouns between sentences: persons with autism, Autistic adults, those with pragmatic language impairments and executive dysfunction — just like me is what I want to say. But being completely out as an Autistic graduate student (who will eventually look for a position as an academic) seems unlikely.

It doesn’t help that Autistic behaviors are perceived as unprofessional. I tangle underneath desks at meetings. I use they and you pronouns, but rarely I when talking with professors about my fellow autistics. It feels too vulnerable to acknowledge these personal connections, and yet I both live and work in the Autistic community.

These past few weeks it has been so much harder to hide my Autistic traits. To pass as quirky rather than visibly disabled feels like an impossible task; but maybe I don’t want to pass. I’ve felt so unsteady in the midst of grief — that even if I wanted to pass, I couldn’t. I can see overload, both sensory and emotional, coming more easily.

On Tuesday, I felt so distant from myself — as if my brain was attempting to leave my body to deal with the sads of that day. I assume this is some form of mild dissociation, a sort of mind-body disconnect that happens when I’m feeling utterly overwhelmed. It happens less frequently since I’ve learned grounding techniques and discovered stimming, but when it does, I’m still scared. That uncontrollable feeling is awful.

I remember sitting in front of my tablet at the local cafe and noticing my breathing had become shallow. I was in-between. Body in seat; brain across town. I knew what was happening, but knew I couldn’t stop that distant feeling. At best I could slow it down. As I wrapped my arms around my diaphragm, I attempted to breathe deeply again. I returned to the proprietor for a cup of chamomile tea, panicked in the midst of this frustratingly familiar state.

I haven’t had a full-blown shutdown in a while, I said. But this makes sense, considering that emotional processing takes a significant amount of energy for Autistic adults. This grief is so recent and visceral. I sat for some time with a lunch slowly eaten. I realized I wasn’t going to class that day. I approached the proprietor and asked her how I could talk with my professor, who was expecting a fully functioning grad student to appear before her, not an overloaded autistic adult.

She gave me a two-sentence social script to email my professor. She reassured me of how she had seen me grown in the two years I’ve visited her cafe. She reminded me how well I was coping. I remembered her previous community work and reminded myself that witnessing people falling apart was probably a familiar sight from those years. I told myself it was okay; that she wanted to help me.

I kept breathing and remained in the cafe until the proprietor closed the doors for the afternoon. I checked in with my advisor, who knows I’m both Autistic and clinically anxious. She continues to remind me that she notices my strengths and my impairments. Sometimes she explains me to relevant parties when I’ve run out of words.

I remember telling my therapist later this week, at this point, it would be difficult to doubt that I am Autistic. I am stubbornly choosing not to pass in public settings, especially if doing so requires me to prioritize others’ comfort over my wellbeing. My stimming and monologuing can be incredibly othering, but there is nothing wrong with these self-soothing acts. I’m learning to accept that sometimes I can’t hide; that it’s okay to appear visibly Autistic, even if I feel strange taking care of myself.

Earlier you called yourself wonderfully odd, she said. Yes, I suppose I did, I said. I’m moving toward a space of self-acceptance, hoping I can create a climate of acceptance in academia for young women like me. I stubbornly remain in special education research knowing that self-advocacy is a full-time job along with the school work. I feel like I need to defend my narrative, that I am a 25-year-old PhD student who is knowledgeable about developmental disability, who recognized herself by living and working in this field.

I believe this narrative and as I continue to examine my assessment options, seek academic supports, and find allies in my department; perhaps this story grows richer. I tell my story to understand it, lessening my own isolation, while also realizing I’m not alone in it,

Food is medicine, a poetic narrative

I can picture us sitting around that table, standing in the kitchen, sitting on the couch. They say food is medicine, but who are they — have they seen us? Met us?

I can’t visit him — hurts too much is what he didn’t say; would never say — wish he’d say. Because then we would know. And yet we have responsibility for those untold stories, unspoken stories. Why haven’t you said anything before?

We don’t know how to talk about these little tragedies — the pain of never telling — when food becomes poisoned by your words. It would become medicine much later; after lapping trees and feeding cattle; gathering cornstalks. Discarded. Repurposed.

Like you were, but would never say — left only with your words — the streams of your anger. We had to assume. In your transparent pain revealed in anger. It came to the surface easily. In cars, closed off spaces, in rooms. We don’t talk about this is what they’d never say.

Until she did.

Slowly.

It hurts.

This forgetting to breathe between words. Pen scrawling, ripping, gashing, gnawing. Still here, I wonder? Trauma does that. You doubt yourself, your words. The experiences that follow. Maybe it never happened at all.

This hurts. I know.

To talk about, to embody the she who was far away — not feeling, only thinking. A kind of distance that is terrifying. She was here. Heard as stories from long ago drip out, pour out. From that kitchen. 3 hours south of pain. He couldn’t visit, so you do.

Where food is medicine and people are kind; until they yell and you walk away slowly — mind half a mile away.

Distant.

What to do with this space. With us? Tiny bodies living through a storm. A barrage of words. Felt intentions that remain unheard, unseen, unspoken? I wish you could tell me what was wrong — with you? With us.

We remain here as echoes narrate a form we never knew. Of bits of tape and glue, promises you could never keep. You hurt too much.

Violently.

Terrifyingly.

Alone and stark — with only your words. You distance yourself from your own pain. Unsure of how you look or feel now. At this present moment screaming in her face. Do you see that man in you — you embody your own pain. Showing me what you’ve lost. I wish you could redirect this anger at its source. Why are you so afraid?

A rabid dog — hiding from its executioners — snarling, quivering. You hurt. I know — but I can’t care.

They shoot rabid dogs before they bite. Take them to the middle of nowhere before they’re gone.

Lost.

Alone.

Terrified.

But utterly dangerous.

And so they drove you to the edge of town. A small mercy. To be left alone, to hurt, without hurting. This is a desolate space. She leaves you here and walks away — her steps echo as they hit the ground.

You hurt.

I know.

But I must walk away and leave you here. Alone — in the not — and distance of what was. Wishing for what could be, but never was.

You left her here too. In a mire of longing — a sadness of imaginary could be’s.

Never was.

In the silence

following you

raging

screaming voice.

That echoes across a decade. In the what still hurts to speak.

And yet she does.

Slowly.

Painfully.

Willfully.

Stubbornly.

Until she is hoarse and waits for voice to return. She will be; is; for her and the hers that came before. Who hid in that shelter as the bombs came down.

Feeling alien

The past few days, I’ve been rereading Rudy Simone’s collection of interviews with autistic women, Aspergirls. I remember reading Simone’s book for the first time and taking copious notes; these women whose stories were contained in these pages sounded like me. I didn’t feel so alien, and as I continued to immerse myself in its narrative, I felt known.

In returning to Aspergirls, I noticed something else: These women were working through the shame of being themselves in a world ill-equipped for people like them. To recognize one is autistic in one’s 20s (or later) is a jarring experience, but it can also be incredibly comforting: I’m not wrong; I’m different and that’s okay. But it’s difficult to shake the internalized sense of wrong that comes with struggling to fit into an allistic world.

Let’s talk more about shame, she said. This seems to be an ongoing narrative I’ve been working through. If I can see shame at its sources I can begin to dispel it. But shame is tricky; sometimes I’m ashamed of the shame I experience about my own limitations: the missing social cues, getting lost in a task sequence, and trouble following verbal directions. These are everyday reminders that the autistic experience can be exhausting, even with all of the workarounds I’ve developed. Then I feel othered and odd all over again.

The alien nature of Autistic experience is a commonly used metaphor in our community. I recently checked out A Field Guide to Earthlings, a help guide designed to explain allistic (non-autistic) social behavior to autistic people. One of the early forums for autistics was Wrong Planet, yet another reference to that alien feeling — the not belonging here.

I remember writing a notecard for myself: “You are here in this place; you fit; you belong.” For me, the experience of feeling alien was accompanied by a sense of shame: “I don’t know how to fit; maybe I am alone in this.” Shame breeds isolation, especially when it’s accompanied by a sense of generalized anxiety. These lingering fears — of being yourself, of being visibly Autistic and perhaps being othered in the process — can make you hide. You script and avoid talking about yourself because that’s too awkward. You fear being misunderstood because it’s a familiar narrative (and it hurts).

I am an Autistic woman with an undergrad degree in psychology, working toward her PhD in a special education related field. I recognized these traits in myself about two years ago, which means I’ve managed these programs of study using a large number of workarounds — the rituals and routines that help me remain a (mostly) functional adult. I feel like a magician sometimes, with these slights of hand designed to make me appear typical or at least the more socially acceptable quirky.

This process is exhausting, even though I’ve given up on the idea of passing (unless the situation leaves me with no other option). I want to be visibly Autistic when I can: to stim in public, monologue without fear of boring my conversational partner — to be myself. But even as I practice being proud, part me is still terrified. Of what you might ask? That my self-made organizational supports will fall apart and so will I.

And this is the point where my therapist would ask, what would happen if you did? I’d attempt to develop yet another contingency plan; well I suppose I could… And that would be… I’d imagine the okay that would follow. We would talk about how well I was coping. This is fine, but I’m still tired of needing elaborate diagrams to complete final essays in a timely manner — tired of completely forgetting why I walked into a room.

To know how much work it takes to live a functional adult life with my Autistic brain — a neurotype that struggles to fit itself into an allistic world — is tiring. And in this exhaustion, I feel wrong, even though I’ve struggled to thrive among all of these things. Part of me wonders if I just worked harder I could be better. That’s the internalized ableism talking.

Yes, you have executive dysfunction and social disability, but just stop being that way, it says. Stop shaming yourself. Why do you do that anyway?

These are the self-critical parts of myself with whom I dialogue. But I can’t quell the shame on my own because internalized ableism doesn’t begin with me. It is reinforced by faulty expectations and misunderstandings of what it is to have a disability. I’m learning to ask for help as I question this narrative — of what it is to be functional, independent, or even an adult. I’m changing these mile markers.

I have a whiteboard with multicolored notes reminding me of activities of daily living, appointments, and upcoming coursework. There’s a column for the support people in my life, who encourage me to manage the anxiety and socialize even when it’s intimidating (to be around people, when I’d rather hermit). I have a desk at work I cover with sticky notes. I’ve learned to write all auditory directions down, so I can remember them. Part of me is ashamed of these actions because they remind me of my struggles, but they help me anyway.

The Autistic Internet reminds me that I’m not alone in these fears of being myself or the frustrations of still needing workarounds to get through the day. With each Twitter post or blog entry I read, I’m reminded that I’m creating my own kind of normal — a relatively predictable, fulfilling existence — and reminding myself that will be enough.

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.”

TARDISTIC

Bigger On The Inside

Laura Left

She was last seen here.

Conditionally Accepted

a space for scholars on the margins of academia

unpuzzled

Completely Autistic

sxswfury

SXSW is a festival in Austin. Warning contains: hipsters, tech, swag, pedicabs, unwarranted enthusiasm, unknown bands, and fury. #sxsw2015 !

Cracked Mirror in Shalott

MH, DD, ASD, and Disability Advocacy

Left Brain Right Brain

Autism Science, News and Opinions since 2003.

Stylishly Impaired

Well-Equipped Crips: disability, pop culture, fashion, technology

cognitive content

a comic about random things

People

Not Puzzles

rootless introspection

Musings of a rootless living being. (I know hard to guess from the title, right?)

The Belle Jar

"Let me live, love and say it well in good sentences." - Sylvia Plath

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