Ask an Aspergirl

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

Tag: autistic self

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.

On Being Autistic In Academia

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.

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 post 1,318 more words

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,

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.”

Expressive mediums: In crayon, poems, and imagery

Intricate tree stims I write because it helps me make sense of the world. I’ve journaled for as long as I can remember, mostly to get the sea of words from my brain to the page before me. Writing helped me see my worried thoughts; they became real, even though I couldn’t slow them down.

I remember when I first started seeing my therapist, I could only discuss thoughts and ideas. Finding feeling words that described my inner reality was much harder. Help-seeking is incredibly difficult when you’re not even sure what you’re feeling beyond bad and muddled. I could talk about the emotional experiences of fictional characters, but struggled to talk about myself. We used the third person often in those early sessions:

“Imagine you as a nine-year old girl living in those circumstances. What would she have been feeling then? Maybe you can tell me about that.”

I discovered metaphors and imagery in the midst of finding long-forgotten feeling words. I didn’t know how to verbalize my emotional states, but I could write about them. Then I’d read aloud what I’d written during my womyn’s writing circle. I started going to circle during my first semester in the PhD program. What a rough transition. I thought I’d have an easier time after switching from an applied practice program to a research-oriented program. I’d forgotten how difficult transitions can be — and so I wrote about these experiences. I talked about utterly perplexing social scenarios and traumatic events by channeling these memories into poetry and then reading those pieces aloud.

These days, I’m making sense of what it means to be a self-recognized autistic woman with co-occurring generalized anxiety and lingering grief. I’ve cobbled together mental health supports and social networks on campus and at church, and yet being who I am is exhausting sometimes. I talked with my PhD mentor last week about trying to find my fit in a department where I feel expected to pass as typical.

“Most days, you’re ‘good’ quirky. That period when your [psych] meds weren’t working properly, you were concerning quirky. You’re in a field full of weirdos — just look around. If I ever thought you couldn’t do this [finish the PhD program], I wouldn’t have suggested you apply.”

After this conversation, I decided to let myself be more autistic. If I didn’t pass particularly well anyway — quirky (read as visibly autistic) on a good day — perhaps I didn’t have to try so hard to appear typical. I’ve learned to stifle my passions because they turn into monologues. I feel odd tapping my fingers when I’m overloaded. I started bringing my Tangle (a stim toy) to class and work. I sang to myself as I shelved and stimmed. I brought my 24-pack of crayons to church.

I’ve documented this process of letting myself be autistic in a series of poems and images that I decided to call stimmy art. I drew the tree and accompanying poem during a church service in which I felt triggered. Drawing trees is a grounding experience — a series of repetitive movements that becomes a vibrant picture. I can keep adding branches and foliage until I’m ready to stop.

In these expressive mediums, I let myself be what I need in that moment. I hope to feel decreasingly self-conscious when I engage in self-care. Laura Hershey — poet and disability activist — reminds me, “Remember, you weren’t the one who made you ashamed, but you are the one who can make you proud. Just practice” (1).

  1. “You get proud by practicing,” a poem by Laura Hershey — http://www.thenthdegree.com/proudpoem.asp
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