Ask an Aspergirl

Pondering popular culture, generalized anxiety, and being Autistic

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.”

A weekly sharing of stories and dinner

Study group watching Christmas special I remember being really nervous the first week I went to dinner group. A friend and I were invited for pizza and game night with a couple from church who hosts these weekly gatherings. I packed my Mary Poppins bag: a large blue purse containing my Tangle (a fidget toy), poetry journal, and a book (that night: Cynthia Kim’s  I Think I Might Be Autistic). I usually bring at least one book to social gatherings — just in case. Sometimes what I’m reading becomes a point of conversation, but other times, it’s a way to recharge.

We arrived that evening to meet a couple in their 30s, a sociology PhD student and an engineer. They seemed nice enough; a mutual friend, who’s also a community pastor, had introduced us via email. At this point in the story, it’s probably important for me to note that I mostly attend church for the people. It’s a familiar point of contact I’ve had for most of my life. Their small children let me play with them, which was a welcome distraction from the unfamiliar (although friendly) setting.

As we ate pizza, we were invited to share our backstories. In a way, this sort of free form conversation felt like the intake interviews I’ve sat in before: “So what brought you here today?” And so I began telling my story, more deliberately than I do when I’m feeling overwhelmed at a coffeehouse and start talking at the nearest person. I talked about growing up in a relatively isolated environment, having trouble trusting people, and recently realizing I’m Autistic. These were the sorts of details I’d ordinarily allude to in conversation, but instead I got to say everything all at once. This is who I am; I feel safe enough to share that with you.

I’ve since attended dinner group once a week, and I’ve been grateful for this intentional community. It’s a loose knit group of grad students, seminarians, undergrads, and working people. Thursday nights are my pause button, a time when I’m closer to sharing how I’m actually feeling. I could be frustrated and uncertain, utterly exhausted, yet not be alone in that space. I can sink into the comfort of the couple’s couch with a cup of  Roobois tea and talk through the confusion of the week.

We close with a time when people can review the week’s events and ask the group for prayer. Sociology PhD student says that rituals are important for communities like ours. We share and then reflect. I join in a familiar religious practice I don’t entirely understand, perhaps to honor our myriad of experiences (or the echoes of belief I still can hear). I’ve said before that I mostly attend church for the people. Maybe dinner group is an extension of this practice, a way of sharing in others’ internal narratives using a common language.

As the semester begins next week, I’m grateful for a group that reminds me, “The longest, coldest, darkest nights can be the warmest and brightest.”

On unfamiliar spaces

“I don’t recognize this space. Perhaps if I did I could find my way through it.” These thoughts seem to be on loop lately, as I’ve reached the end of the semester with two Incompletes and a bewildering sleep deficit. It’s hard to advocate for yourself when you’re in autopilot, using the social scripts you’ve accumulated — when describing yourself as okay seems to cover a wider range of emotional states. It’s difficult to convey how overwhelmed you’ve felt, while maintaining others’ confidence in your ability to eventually complete tasks.

I’ve spent this fall semester wondering what happens to people like me — those of us who can push ourselves to manage, but ask for how long. I’m three classes, one preliminary exam, and an oral exam away from proposing my dissertation. And yet I sat in front of my PhD mentor talking through options, asking myself if I was capable of finishing my graduate program. Sleep eluded me this semester, even as I visited my old psychiatrist hoping to find a pharmaceutical remedy with minimal side effects. With the insomnia came my lingering self-doubts.

I text myself the statements I want to internalize. The kind words I need to hear when I’m frustrated with my own limitations and fearful I’m worsening the situation.

“You are doing what you can with the the resource that you have. Even though I feel stuck, I’ll find my way through.”

I’ve struggled to find time (or energy) to write this semester. I feel like I’ve been in triage mode this semester: creating new timelines when the previous ones were unmet and trying to ask for help without oversharing. I wanted to find a coherent narrative amongst my struggling through: This happened, so I did that, and that’s why things resolved. I’ve longed for a linearity that doesn’t come so easily.

Perhaps I’m creating a narrative that doesn’t exist yet.

And so she learned to imagine these things were possible, that she could manage, not in spite of, but because of.

What would you think of someone who’d been through all of that, who was where you are now?

She’d be pretty amazing.

The small madnesses of ritual

We keep coming back to this place — in these small madnesses of continuing on. I find myself yet again in your office trying to find words for the slowing of thoughts. These broken routines and rituals — 2 bus rides there and back, away from the comforting back and forth of books. Perhaps I romanticize the past in these small madnesses.

In the continuing on, sitting here when my brain feels much further away — across from you. We engage in this mechanistic dialogue. What are your options? In the uncertainties of meds, the weariness of pushing self. The wishing you had an opinion you could openly share — knowing you can’t tell me what to do; wishing you would. Between A and B is a series of interconnected diagonals.

And so we sit — what are your options? I don’t know. Tell me? I wish I could make this dissipate. For you I would. But I’ve been in this chair long enough to know I can’t. This hurts — a place of familiar indecision. Here’s where I was and here I sit today — feeling stuck. Wishing we were getting somewhere — three weeks ago was a series of readings and papers — following the syllabi, not knowing how to fill in the in-between.

I know this feeling well — that I will be spent and broken. And only this stuckness will remain. You needed to do something concrete. I understand. Adulting is terrifying at times. I have to make this better or fear the falling apart — familiar fear quickened by lack of space to cope. Not alone in this, but you know yourself. I wonder sometimes; as I try to separate myself from the needs of others.

I am exploring perhaps — in this fixed place. Are you finding yourself in corners, longing not to be? No, that remains the same. I sit across from you wanting to feel better, be better — not knowing how. I verbalize these long sublimated fears — wanting to disconfirm them. Not knowing how.

Your claims of support and being with feel real enough — in this routine sharing of muddled thoughts and feelings, I doubt myself yet again. Wanting to convey this experience lingering in my brain space — this is hard. I know. She wishes for a well-worn path. In normalizing this weariness, does the isolation lessen? Fears and doubts shared aloud.

Hoping to see you in 3 weeks as things keep getting done — seeing resolution. She continues on toward the door — down the hallway back to campus. Perhaps that’s enough, she thought. Letting these hopes sustain her in the weariness of in-between.

An internalized sense of wrong

Before our session ended, I left my therapist a copy of “She did it anyway” because I wanted her to understand how it felt to fall apart in front of a friend. Maybe I wanted her to see how hard grad school had been for me lately — the weariness and isolation that comes from pushing yourself to do tasks you remain unsure you’re capable of accomplishing. I’d forgotten how often I referred to shame in that poem, until she brought up the topic during my next session.

Let’s talk about shame, she said. Because although you were actively shamed by a professor who didn’t understand how your disability impacts your schoolwork, this is not the first time you’ve felt this way. You and shame have a history together. For some people, an internalized sense of wrong becomes part of their identity. Maybe that’s where your autistic traits and the experience of shame overlap.

I feel like I’m constantly developing workarounds to mitigate the tasks I cannot do the typical way. To avoid the notice and unnecessary questions of others, I’ve learned to hide this process. It seems that visible disability and quirkiness are merely different perceptions of the same experience. I am struggling, but how others interpret this behavior seems to depend on my value to the person. Do they notice my strengths amongst disability? Do they ask how they can help, rather than imply I’m not trying hard enough?

Back to shame I suppose. It’s a topic I avoid thinking about much, even as I live with the experience of it. I remember when Brene Brown’s TED talks were often mentioned in the department. Okay, I acknowledge that I experience shame; now what?

For me, internalized ableism — the sense that I should be able to do things I struggle with, and if I can’t, then I don’t belong — is a source of shame. It’s hard for me to ask for help because doing so requires me to acknowledge my confusion and seeming inability to meet the requirements of my role.

If I can’t develop a timeline for finishing tasks, maybe I shouldn’t be in grad school. Why can’t I consistently meet deadlines? What is wrong with me? That’s what I’m really asking, regardless of how I phrase it.

I’m learning to ask for help. A few weeks ago I found myself crying in a friend’s cubicle, realizing I didn’t have to explain the extent to which I was struggling because my body was showing her. I tried writing down why I was so upset, and she waited out the tears until I could explain what I needed.  She listened and helped me make a task list. I emailed the task list to my PhD advisor to keep me accountable. She continues to remind me of my competencies as a grad student in the midst of my struggles.

And so we learn to speak truth to shame. This is what I know — and even when I don’t, this is where shame cannot speak to my experience. Because shame is wrong about me. So I keep writing and doing, even when the act of trying feels like pretending.

Relatable narratives at work

Being Autistic working at a Developmental Disabilities Clinic is a strangely meta- experience. I see children and adolescents in the waiting room whose bodies move like mine.  Their parents sit beside them, waiting be seen by the student therapists who work in our office space.

Just watch. We’ll be okay. I wish I could tell you that, parent waiting outside in that little room with chairs and magazines. But you’re not like my child — or even teenager — they might say.

Yes, you’re partially right. I have circuitous verbal language, my own way of being in the world — lengthy task lists, but I’ve visited the land where your kid lives. I can pass as quirky, but not typical — until I freeze and appear utterly confused and incapable. I stand there watching. Knowing I should ask for help. Piecing together my words into a somewhat coherent whole.

Last week was a series of new experiences — first week at my new graduate assistantship (GA) as well as the start of the fall semester. I’m only taking two classes, but I’m doing remedial work for one of my statistics classes (another story for another day — if told at all).  I thrive in the midst of routine, perhaps because the overarching structure makes sense to me. If I miss cues, the routine provides a externalized reminders of the tasks ahead.

My cubicle is often covered in a series of sticky noted task lists. I tend to get lost when projects involve more than 2-3 steps and a larger supply list. I’m still learning my way around the office, but at least I know  where the stapler is and how the copier works. I wondered how I’d handle transitioning into this clerical position. I remember being excited to find a graduate assistantship in my field, but not ready to leave the familiarity of the library.

I’ve felt self-conscious stimming at work; I tap my fingers together. I keep wondering if my on-site supervisor notices all of the stereotypically autistic things I do. I have trouble processing verbal instructions, so I write directions for most projects I’m given. I’ve become accustomed to bringing my Tangle to work, worn as a bracelet twisted around my wrist or stowed in my purse. I stick my music player in my pocket when I find myself in worry loops and need distraction. I’m essentially providing my own accommodations at work since I lack a paper diagnosis and have accumulated coping skills.

As part of my GA, I do office work for my PhD advisor one morning per week. We rarely talk about how I identify as Autistic, but sometime ago we had a conversation about labels, which she seems to view as a means of obtaining supports. When I was first hired, she mentioned helping me create a weekly schedule for work, so I could develop a routine. She seems to understand my need for structure and clearly explained tasks.

When I need help in either of these work settings, I’ve learned to state the problem and describe how my supervisor could help. I have trouble generalizing, so I realized I either need lots of examples or plenty of time to ask questions. In a work setting, I worry this trait makes me appear overly dependent on others. I return with questions or clarifications until I can make sense of the task. I feel silly sometimes, but I’m practicing help-seeking, rather than sitting with my confusion.

Working at these sites I’m reminded of the interconnected nature of support services for developmental disabilities. When I searched for adult autism services I looked outside my college town because I knew most of the local service coordinators and community people. These are the families of autistic youth and school professionals with whom I interact. I know I can’t keep these worlds completely separate, but I needed space for my lived experience as an Autistic adult.

I wanted to avoid appearing as if I was appropriating the experience of the local autism community. Maybe I still wonder if this identity is mine. I remain ‘out’ as Autistic with my close friends and grounding people, but at work I’m just seemingly quirky.

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