Ask an Aspergirl

Pondering popular culture, generalized anxiety, and being Autistic

To be believed…

If you were to be believed, if you told the stories that remain unshared, what would you say?

My parents fought; that’s the easy way to tell this story, but that isn’t true. Not really, and the loss I feel in that telling hurts, desperately and violently. And I ask myself why I’m lying. For them? For me? For all of us not ready? Because I’m not ready.

For that face

that follows the telling.

I am believed, but scattered too — as unspoken things come to light — always too soon. I’m not ready and neither are you — never will be for this litany of sorrows. No substance to blame, a simpler before to predate an angry after. Only a sadness described: “My dad wasn’t a nice man; I wanted to be better,” he said. “I can’t.”

This hurts to speak, to write, to be. I know. The pressure of heart and mind reaches my pen, my hand, my being. My side is pain. Tension in the telling. I am here and there in the telling. My dad yelled. I hid.

In science fiction and tessering narratives. In families not as sad. In stories I could recognize. I tessered to — traveled away from here. To an unfamiliar better; but that room of spackled ceiling and little girls hiding — one distant, the other all-too-present — remains, and they hurt.

I tell you — sitting across from me —

“All families have problems.”

“Not like this.”

I want to shake them, but instead I nod. “I guess so.” This hurts; I know. I try to speak again — of never knowing safety, then having to patchwork it together in a dwelling that is solely mine, with only the company of an orangey tabby.

You are safe; you are here — a repetition I hope to believe, need to believe. Sometimes do and it hurts. “Excruciatingly so?” The woman across from me, the sage, inquires. I am here and there simultaneously.

My thumb and forefingers cramp, in the memory of being misunderstood. Where is belief without mutual understanding, a shared pain? I wish you did — but you don’t. How could you? You want to believe me, but don’t know how.

So we sit with a coffee or two between us, as I share this lengthier tale.

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

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

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

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

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

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

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

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


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

At first light

I resist its presence — covering my head, resenting the blackout curtains for doing such a poor job. I hide from a day approaching — resisting its start until the alarm.

This was before. I don’t know if I’ve reached an after, but I’m trying. Coming to a place of steadying myself, as I hear the voices of those who prop me up — give me copies of their own well-worn encouragers. An okay to follow the uncertainty of not yet, a newly arranged furniture set, an office setting filled with my words, my worries — created ideas of what I wish was — where I travel to in my mind of days far too long.

But she says I’m doing better — I’m relieved and surprised — in the lighted windowbox where my truths are spoken, there is pain and memory. Of what has been for far too long. A grief of familial origins — of not feeling safe until these steadying years. To realize this has been a coordinated effort, I feel cared for, loved, mothered — feels strange to say that in this created space — outside the piece of theatre, one act at a time– where I am forced to sustain myself.

Under these lights, I am home. Cared for, caring — as I sink just a little deeper into the couch, tangle between my fingers, I plan for thriving, to explain the hurt I cannot name aloud until now — but so many sentences I have written.

Urged along by my fellow women autists, artists, writers, creators of this space that is hyperreal and just close enough. Lights travel through fiber optic cables, bounce off cell towers, and bring me home. We listen, creating space for us, for me.

She pencils me in for a week from today — I sink into the couch outside — not yet ready to leave this sacred space — to push myself into the blaring sun. A wooden box is clasped between my fingers. I slow myself, only to rock back and forth, ever so slightly in my seat as I type and plan and live here. Being for a while.

There is safety in not yet — a list made — a listening ear to tell me when you know — when you have — because I believe you . Managing is hard to describe, thriving even more, but witnesses were here. To see, to describe, to be in this place.

“Known and loved because of, not in spite of” — into echolalic time and space — into place unknown. There I am — as words I know well enough leap from my mouth, as I tell you who I’ve been, unknown audience, because this is me — stripped of context or motivation. But my passion remains.

In subtext of women like me, as I avoid these pronoun shifts, but my fingers dance and my voice races, knowing my tablet could be my voice, if my words escape me. To assist; to augment, but I will remain here in this place.

Fitting, belonging, exactly as I am — all of me being myself, cloaked in a cape of words.

Cat story

So whatever happened to you getting a cat?” she asked after hearing how isolated I’d become this summer. I suppose I gave up in the idea. Maybe I talked myself out of it after my car met its demise a few summers ago. The pet deposit was nearly a month’s rent. I was worried how I would get to the vet if the cat got sick. Adopting a cat felt completely unrealistic and unsustainable — another “not yet” in a series of post-graduate maybes.

But when I got home, I decided to call my landlord’s office, just to see how expensive the pet deposit would be. I left room for hope and perhaps another point of connection. “People are still important,” she reminded me, “but having a cat could help you feel more connected — less in your own head.” I was surprised to hear that the deposit would be waived because my therapist had written a letter of support for me to get a cat as an emotional support animal.

I texted a friend of mine (because I’m also trying to reconnect with friends in their own busyness). We met for tacos and toward the end of our meal, I apprehensively brought up the idea of adopting a cat.

I’ve learned to feel guilty for the pleasures I allow myself. Maybe that’s because I’ve mostly lived in survival mode — to take up less space and want fewer things. To grow up needing little because I learned the cost of things early in life. To hint rather than ask directly for things I wanted. I justify the small purchases I make — the decaf lattes are accompanied by social interaction; I get a cheap meal to leave the house when I’m lost in my thoughts.

Adopting a cat seemed impossible, given the current circumstances of my life. I worried I wouldn’t be able to care for the cat if it became ill. That my budget would be stretched too thinly. And yet I followed up on this notion. I left room for joy, thinking of sustainability in emotional, rather than just economic terms. I asked a friend for help in navigating the adoption process. I allowed myself to connect with someone who didn’t see my need (or me) as a burden.

I visited the shelter I volunteered at a few years ago, when I’d visited the possibility of adopting a cat. I brought a list of names from the online listings, but those cats didn’t seem like a match. Then I met TC, a two-year-old tabby who seemed rather affectionate. I asked my friend who came to guide me through the process what she thought. She agreed that he was mellow and would help me calm myself.

Last Friday, I took home TC after the adoption application had been approved earlier that week. Once I gave myself permission to look into getting a cat, the idea didn’t seem like such an impossibility. “Your mental health isn’t a luxury,” I reminded myself. “I’m capable of caring for a cat; being with a companion animal will get me out of own head.” I made lists, consulted with friends, and researched cat care.

I’m finding my own rhythm lately — texting friends to spend time together and being more intentional about conversations in community spaces. I’m taking care of myself even when it’s hard. Coming home to a fluffy orange companion helps with this process. I’m making room for joy.

imageImage description: Sleeping orange and white colored cat rests his head on the leg of person wearing grey shorts. Both sit on a blue patterned couch.

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.

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