Ask an Aspergirl

Pondering popular culture, generalized anxiety, and being Autistic

How to poem slowly

Write a few lines on a scrap of paper — stop writing from the exhaustion of the day. Feel bad about your lack of writing and the ensuing self-deprecation. Damn it self. Practice self-compassion again — feel badly — write about not writing — wonder why you’re not writing. Stop writing because all that comes from you is slowed and stuck and your hand is cramping.

Keep writing. However slowly.

Because your words matter. Remember why you write. Create a hashtag if needed. Listen to the words around you. Before the shit was hope and fluidity — where fear dwells is the blankest page. Then blaming yourself — myself — for the exhaustion of late.

Keep writing — for these words might resonate with others. They speak words of lived truth. What we are learning to say aloud. Of autistic truth and fear of finding the right words — of self-censorship — of tweeting these fears into the void of the internet, hoping for a response — waiting for the words to come and finding the dialogue we missed entirely.

Of how to poem slowly and live, sitting around a table of witnesses to our stories. Herstories we share aloud. The deepest fears longing for expression. She keeps writing as spent emotions become verse. Scrawlings on a page that are enough. And so is she.

Poem slowly, so that these longings may coexist together. That we may know we are real. Here and out there — in these spaces of ill-fit and utter comfort.

We make up words in the safety of here — as thoughts of shame and guilt, perseveration and self-doubt turn into hope. In conversations of building and living, coexisting in spaces of acceptance.

We write, so that we are not alone — that I am not alone — in these thought loops and self-effacing litanies. That we might believe the encouragements and self-affirmations of others — because they are true and they matter.

Poeming is a process — a self-created verb to guide us through blank spaces. In fear and doubt, there was a poem and in longing for elsewhere was an expression of being. I long because there is a place calling me.

Through poetry I might arrive there.

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…

Metaphors for self-compassion: The imaginary figures eating my cereal

I reach for elaborate metaphors to describe emotional experiences I’m trying to understand. Shame becomes a monster, crouched by my shoulders. Anxiety is the neighbor who somehow wandered into my house and insists on eating my cereal, while sitting comfortably on my couch, refusing to leave. Self-criticism becomes an enormous iron machine fueled by the thoughtless words of others and my own self doubt. Metaphors help me to fill the gap between the hurt of these experiences and my lack of words to describe just how badly I feel then.

I’m practicing not judging myself when I’m being self-critical and thus ashamed of myself — into infinite loops. My therapist calls this practice, self-compassion — to look at myself like I would a friend that’s struggling or a fictional character whose frustrations mirror my own. It’s easier to be less judgmental towards people who aren’t me. Self-compassion is noticing the strength of my own history — the resilience I’ve shown as I’ve managed the anxiety and learned to care for myself emotionally.

This is hard, and it hurts. Yes, it does. I suppose that’s how the growth process works. But it will come to hurt less as you practice accepting this current experience — even when it hurts, especially when it hurts. Because fighting against it and assuming you’ve done something wrong to encounter these frustrations hurts worse.

This is where I become increasingly self-critical. Because even mindfulness is a difficult practice. To see and acknowledge without judging myself. To be there in the hurt without blaming myself for causing it. I realize it’s easier sometimes for me to blame myself because at least then, I have some (perceived) measure of control. But that’s not true. I am not to blame for the worrisome nature of the period between written exams and oral exams — certainly not for the ambiguities of dissertation proposals and post-grad queries.

Often I feel like I should be doing more, assuming that would quell my anxieties. But I’m learning to recognize what I’ve done, the growth I’ve already experienced. This is so hard, but I keep practicing. Working through meta-shame (shaming oneself about feeling ashamed) is a lengthy process.

I’ve been having a hard time lately — with sleep and with seeing past the stresses of graduate school hurdles. This underlying fear that I am not enough, that I’ve failed to anticipate some trait in myself that will be my undoing is so difficult to shake. Sometimes I borrow the hopes of others: the reminders from my PhD mentor saying that I’m a good writer who can finish this program.

Perhaps hope is replaying that imaginary tape — the one stating, I will eventually be okay, until I come to believe it. To imagine a thriving space that hasn’t arrived, where a future version of myself is both making and finding her fit. It’s imagining how I’ll be enough and valuing the unique vantage point I have as an Autistic woman researching autistic experiences.

For now, self-criticism and shame are my neighbors. They sit on my metaphorical couch, while they make pointless comments about the television programing and complain my cereal is stale. I get off the couch to pour my own breakfast, learning to coexist with this unwelcome company. We glance at one another as my day continues.

Being patient with myself is a process.

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.

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