Ask an Aspergirl

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

Tag: shame

Dear shame, an open letter to April

Dear shame,

I’ve written you a lot of open letters lately. But today I declare in a soft, yet confident voice, get thee behind me. Shush. Fuck that. No more. You persist, but I ignore. You mock a generation of women like me — too much, not enough. Too late for you to be yourself. But wait. Listen to those who talk back to shame in its illusive forms. Who dare to declare themselves good enough, in-progress always, works of art.

No more, we shouted together. Retelling our stories into being; believing the contagion of voices. I believe her. I believe we. I believe in us. In community. In life. Here together. Fitting, belonging. Becoming until our seams are worn and our fabric tattered. We are here together. Being. Belonging. Together — ourselves.

Until our poetry becomes a chorus of voices and signs and symbols never before experienced. Heard. Understood. Hear. In this place. Fit. Belong. Linger in this hyper-reality. A 1-act play. This is an invitation, to be here in this present moment sharing truths we needed as little girls hiding in their rooms until the howling stopped. Until the violence paused. Not ended. We mourn together, until mourning comes with tears of piss and vinegar.

No longer alone. Here in this place. Together. Fitting. Belonging. Becoming what we never believed. We are anomalous survivors, you and I. Unicorns and Nessie. The less than 1 percent of folks, these women like us. Flapping with joy. Soundlessly clapping. Hands back and forth, bracelets jingling. Our tapping fingers sing in eighth notes. We join a symphony of voices.

Your own. My own. Computer generated, voiced, signed into being. We are here now, for one another what we always needed. Ourselves. A community of stories.

 

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On tessering

“How are you?” It’s a question that begins most of my conversations these days; I’m never quite sure how to answer. Most of the time, it seems like an acknowledgement of the other person’s existence, not an inquiry about our deeper feelings.

This is not the time for me to unpack my emotional states or the worries I’ve tried to quell all day: How I can’t seem to shake the idea that something is wrong with me and my subsequent actions are making me feel worse. How I often wonder if I’m missing something. When I fear I’m not enough.

This is merely a time for social niceties. When I respond with “okay” or if pressed further, with “managing.” Managing what exactly? The world around me? My own anxieties? Because both tasks seem daunting.

What if I’m tessering? But that response would require greater context. I would like to look outside of this exhaustion and fears that I’ll always feel this way — to see a kind of hope, a will be that hasn’t arrived yet. In A Wrinkle in Time, tessering is a more efficient form of travel between time and space, but the in-between still hurts. That’s where I am now.

“What if you stopped contingency planning?” she asked. What would it be like to just be here? “I don’t know,” I responded. Because this is the space I’ve inhabited for as long as I can remember. I don’t know how to be in the present without looking further ahead and subsequently worrying about how things could fall apart (because of me). Self-doubt is vicious.

Some of this is ableism. I’ve internalized the norms of a society that doesn’t recognize disabled experience as a way of being in the world. So when I’m utterly exhausted, it must be my fault, and I should have coped better (forgetting how much harder it is for me to steady myself).  There are fewer models for graduate students like me. I’ve mostly learned to self-accommodate; I create structure when I can (wishing more was in my control) and seek help in coping with my anxiety. I take meds; I attend therapy. But I’m still tired.

I recognize that this weariness is normative among graduate students, but it seems to hit me harder than others. I’ve reached the end of yet another exhausting semester where I’ve pushed myself to keep writing and breathed my way through shutdowns. When I’ve just stopped because my processing was too slow to continue working. When I feel lacking as a grad student. When I fear for what’s next for someone like me. For me.

I keep an ongoing mental list of the things I’ve managed to do while anxious and/or exhausted. Sometimes reviewing this list helps. In the middle of things, there isn’t an endpoint, a definitive will be if I follow these steps. I’m tessering because I’m not completely certain of my destination. I hope for what will be in the midst of not knowing.

I feel pressured during these holidays to gather myself back together. To rest intentionally and then return to school ready to write (and ignore my feelings). There must be an in-between, but the “how things got better” narrative dominates. I’m afraid to admit when I’m still struggling. What if my academic supporters lose patience with me?

Perhaps more graduate students like me are struggling to balance self-care and productivity? Maybe even wondering why they’re still pursuing a goal that feels so abstract? Are we hiding out of shame and self-preservation?

For me, sometimes hope means worrying about the future. Because that action assumes I’ll find my way through now. Sometimes the best I can do is to acknowledge both realities: that I don’t know how my exhaustion will resolve, but a future where I’ve cared for myself and completed my PhD exists. Maybe I’m even earning a sustainable income in a context I enjoy. Maybe.

I imagine myself looking at a door to a world parallel to my own. Where what will be exists and hope lives. I stand in its entryway as I remind myself, “You are doing the best you can with the resources that you have. That’s enough. And so are you.”

These spirits are absence.

The spirit of grief lingers with me, through time and space, not easily described or grasped. It aches, sometimes desperately and violently, until I can feel no more. We live together in a space barely explored. Where words are deprived of their meaning. When the violence of metaphor barely explains what it is like to live here in this.

Anxious, trouble, troubled, but only after the fact. In the excruciating now — would be too much for her to handle. I would be too much in overwhelm. Fearing she would encroach upon my space — my anxiety — to handle. To throw pills and magic words at an illusory condition. To will myself here and have my mind wander anyway. To accept myself as I am. But you need me to be better — but that’s not myself.

I have so many metaphors to describe these lingering spirits of worry and overwhelm — as they loop and surpass I and then. I lose myself in imagery, trying to describe what outsiders cannot feel. These ghosts of what was and is. How I grieve for what never was. As I become myself, the violence of words plagues me — as anger and unintended cruelty visit me in yet another form.

A brain against itself cannot stand; but it can breathe, sit, be with the moments I wish away; on floors of clean, well-lit spaces, as I wonder if I’ll always be here. Clinical language cannot describe this viscera. It just is. I sit with my worries and unsteadiness until I safely return. Sometimes after the flood of words and the torment of shame relents.

I sit here waiting and hope is here too; a ghost of memory reminds me why I cannot pray to far away or up close. I was abandoned unto this. So here we sit with a community of ideas and bodies. Of an after this, when we live here.

Grief is like a boomerang, distant storm clouds that shake bodies into memory, into being together in the inexplicable nothing. In the why would God; why do we still believe in anything; when it breaks so easily. My words go into air as I grieve for an idea that becomes being. Here in this place; fitting; belonging.

I was talking to a ghost. A paternal who never was; could never be, as grief cycled through generations of men and abandoned us here in the echoing silences — between the floods of angry words. Here we are after the storm. It is too quiet. Can’t they hear the distant thunder? See the cracked earth? The dead leaves — crumpled under feet as earthworms turn to soil.

In the post-conflict of grief, I sit and sing and be with a figure I’ve never known well — a jello-molded god of what was not. Can I be disappointed in non-existent, maybe is imaginings? Is it easier to find a ghost than to implicate absence? I’m angry with an idea, but today we sit with a grief I share, but never knew myself.

You hurt, I cry. As you speak of a kind man I never knew. I wish I did. Mine leaves me vaguely written well-wishes. Any more contact beyond these ghosts would hurt me too much.

Sometimes i don’t believe my own phantom pains. Wondering what could have been, if they, if I… But these what might be’s are only ghosts. And I am here with aching grief — inserting hope into a pain I am only beginning to explore. These wounds are deeper than I know.

I wait to be minimized. For a proclaimation of not enough pain to count. But ghosts don’t care. They linger and remember the was and is. As I hope for what will be after the violence of memory.

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.

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.

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

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.”

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.

Coaching Along the Spectrum

Because nobody is an island.

The Little Explorers Activity Club CIC

Horse Riding for All Abilities

sleep wake hope and then

life as an autistic (former) grad student

17TH AND DUTTON

AT THE INTERSECTION OF BEAUTY, BEER, HOPE AND HEARTACHE

piper grace lynn

writer. feminist. human advocate.

recoveringmamablog

life, love, kiddos, recovery

Paula Sanchez

Writings from autistic motherhood

Seeing Double, Understanding Autism

raising awareness and understanding the perspectives of children and adults on the autism spectrum

Eclectic Autistic

Days in the life of an adult on the spectrum

Let's Queer Things Up!

Queer/trans identity. mental health. cats.

hayle williams

If you are afraid to write it, that's a good sign. I suppose you know you're writing the truth when you're terrified. [Yrsa Daley-Ward]

distractedblog

Just another WordPress.com site