Ask an Aspergirl

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

Category: finding community

Footnotes from an extended hiatus 

Dear readers, it’s been a long [fucking] time since I’ve posted to this blog — even longer since I’ve written anything resembling a longform piece. But here I am, with my service dog — Marty the terrier — in my lap at Common Grounds (aka the neighborhood coffeehouse). 

Image description: Greyish black terrier wearing a service dog vest

Since we last talked I fell back down the rabbit hole that is severe depression (with some pure-O CD and generalized anxiety for company; I swear, sometimes I feel like I acquire co-occurring mental illnesses like mangy feral tomcats). But I’m still “finding ways to survive.” [1 — thanks Next to Normal for those Light lyrics].

I finally found an antidepressant combo that works — somehow,  Dr A, my psychiatrist doesn’t even entirely understand the why or how — Lithium and Lexapro (both generics — For Medicaid, and SSI, I give thanks). 

I’m still in therapy and probably always will be [thanks for hanging in there and educating yourself about (anxious and depressive) Autistic women like me, Dr H, trauma psychologist made of empathy and stubbornness].

Image: a whiteboard covered in stick figures and captions. For more of this growing therapeutic art project, see my Instagram: @askanaspergirl.

My days are simpler lately: therapy, psychiatry, pharmacy, art, poems, texts, tweets, and instagramed photos. But they are good sometimes. I’m still severely clinically depressed, but I’m here. I keep living out of sheer spite and fury, occasionally joy and borrowed hope. 

Image: plate of eggs and hashbrowns, beside sheet music

And “I don’t have to be happy at all, to be happy I’m alive.” Until next time, be kind to yourselves. Remember, you are good. This life is hard. But you are good.

Image: white woman with red hair in profile and a grey terrier wearing a service dog vest


 

With glittery bits of joy and tiny sprigs of hope, Kat.

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The song of the stars

The song of the stars is so much quieter than I remember.

In this state, I’m rarely listening for the sounds of nature. I know how to listen to silence.

How to not ask the stories she’s aren’t ready to tell.


So I often sit with stories untold. Waiting until these little girls turned women too soon — still children too — whose emotions overwhelm them.

It’s okay to be angry. It’s good to be angry. It makes sense you would be angry. I’m here. I’m listening. 

Often this dialogue is merely subtext — between sips of coffee, entering conversation — forgetting nuances — social niceties —


I talk. She listens. She talks. I listen. The unsaid screams until it’s all I can hear, but I cannot name what happened. Because I can’t know. Won’t know. Often know.

But this isn’t my story to tell. It’s hers. I fill the silence with validation. With repetitions of the obvious. Until feelings return to the face before me.


Two women sitting together in a cafe. Facing a world that often demands our smallness — no space at all; until we are nothing but our fears. Our anger. Our right to feel hurt. Be hurt. These are forgotten. 

Forced to forget the past, we lose these little girls who felt everything. That hurt until feelings stopped. A circuit broken by the violence of words.


When she begins to say the words aloud — I make space for lies, half-truths, and not yets. I know the story, but I don’t. It’s like a half-remembered melody barely heard. But I can feel the rhythm of music unfinished.


Suspecting abuse, I stay quiet — because I’m making space for her words. I begin to ask hows. Whys are best unknown. Differential diagnosing in my head. 


How bad? How long? What would even help? Do you want help? 

All of these questions echo in my mind as I listen for the harmony of silences. Nonexistent parents. No caregivers. A girl who raised herself. 

This is she. This is me. This is all of us. Making family where that word brought only pain. 


We are survivors of who knows what. Relentlessly braving what should have never been. And I am here until she is ready to join this chorus of shouting starlight.

Into skies of grey and black. Imagining the blue and purple of who we could be. Are together in the nighttime.

After Wonderland

“I’m free,” I thought to myself. After 10 days of fewer choices and disempowerment, I am returning to the regular world of normal people with fewer visible mental health problems and mental illnesses.

But I don’t feel free. I feel lost and without power. I exchanged one set of problems for another. I want to tell the uncaring folks — the too busy and too tired to care more than they are legally bound to do so — to go fuck themselves!

Anger is so much easier than sadness. Because sadness is what sent me there. I hurt until I am numb. Find my tears again in the safety of another mother’s phone call. Not changing, just listening.

I met so many women like me — there are only so many reasons why our brains give up on living and take us down with them: anxiety, depression, trauma. But did anyone tell you how brave you are? For living, for signing your fate away to a locked ward. For losing your safety and yourself to try to stay alive.

To submit yourself to an uncaring system, to learn to live with pain, to find a community of women in pain, struggling through just like you. You are brave merely for trying. For giving up your freedom to find it again. You are finding your own answers, asking what do the labels mean. Do they matter? Do I matter?

What if we are talking ourselves into nothing? I can no longer listen to bullshit words that hide the truths we are too afraid to witness. What if we are broken and that’s okay? What if we are a days missed pills away from another breakdown? I saw another patient on the bus — more lucid, more herself — her pain, her struggle, was louder than mine.

My anxiety, my depression — the pills I take to prevent an attempted murder by brain. I am so much closer to the edge than I like to realize. I am learning to trust doctors again — to insist on my words mattering, that my quiet voice and unspoken fears be heard. That my trying (sometimes failing) is brave enough.

Perhaps bravery is persistence. Another crying phone call. Sitting with the numbness — emotional bubble wrap. Being brave is accepting that existence is exhausting enough. Bravery is saying aloud, I don’t trust you, as I sit across from my psychiatrist and her sitting there listening, believing me. Being with, acknowledging and understanding, not explaining away the hurt.

My therapist thanked me when I explained how little I trusted professionals like her. She kept room for hope, while understanding my sadness. I wept and cursed; she listened. Holding space. Instilling hope. These are clinical skills. But this is also being human.

I left today’s session with unexpected hope. I described a fire that burned away my trust. But seedlings keep finding their way to the surface. Perhaps we will nurture this fragile hope — with water and time — patience and soil — compassion and sunlight —  together.

 

A love letter to the Autistic internet

“Some people will never understand the kind of superpower it takes for some people to just face the day.”

My day begins at 6:30, sometimes 7:00, with worries and unsolvable queries. With self-doubt. With wondering how I will ever get through. My cat sits on my chest as I check the text messages I’ve accumulated over the night — from friends’ tweets across time-zones. If only people understood the lengthy space between waking up and getting up. Wishing for several more hours rest. Letting my chest rise and fall with orangey tabby sitting on mountainous blankets.

Some people will never understand — but they do — to the uninitiated, they are my disability support group — but they are more than that. My not-at-all imaginary friends. Across the world. And yet only 140 characters distance from me. We are broadcasting our breakdowns, meltdowns, shutdowns. Celebrating long-fought for diagnostiversaries with cake. I’ll save a piece for you — eat a slice in your honor. This is the Internet.

As we begin #TalkingAboutIt — sharing our moments of falling apart again, sitting in yet another waiting room, for a diagnosis we have long recognized. But these #onhere understand the anger of being misunderstood. How microaggressions are larger than they appear. We survived April together. Then our Day of Mourning. We are unicorns, Loch Ness. Museum curators of our own lives. Never self-narrating zoo exhibits.

We are our own — no need to explain, #onhere. We are a 24-hour clock, a news-cycle of disability, not-fitting, ill-fitting — creating our own space to be ourselves entirely. Coming out to become ourselves. Knowing no other way, we have made our own. A safety net in cyberspace. In Autismland. There’s a Twitter for everything: disabled, academic, feminist, some faith, grad student problems, me. #onhere together.

In a space where we name our own mile-markers. Adulthood is a process. Independence is an illusion, we remind ourselves. Sometimes we even believe our own stories. In this space, we have a shared story. Created nonfictions. Known and loved — because of not in spite of — I repeat to myself. Tell others what is true. This I know. Because we are not alone, here together. Stories typed into the lines of characters before us.

Here in this place — yes, we are, fitting, belonging. Together — here in this creative space of stories.

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.

 

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.

Being in community and sitting together

Sometimes I feel like Larf the Sasquach from Ashley Spire's storybook.

Sometimes I feel like Larf the Sasquach from Ashley Spire’s storybook.

I remember how I felt reading Emily White’s book, Lonely for the first time. I felt known, like she was putting words to the aching isolation I knew all-too-well. That was during my first year of graduate school, before I’d realized I wasn’t a school psychologist.

Before I knew I was Autistic (pre-ASD diagnosis, before I’d found women like me online — via WordPress, then Twitter and Tumblr); back then, I was merely odd and disconnected for reasons unknown. But Emily White knew my story; because she was lonely like me.

I recently finished her second book, Count Me In, in which Ms. White describes how she attempted to develop a sense of community — to feel more connected and make like-minded friends. The passage that stood out to me was about how we can map our social connections:

I can close my eyes and imagine physical spaces where I feel safe — where trustworthy people who accept both me and my disability (because they are both aspects of myself) exist. These are spaces where, as my refrain goes: “I am known and loved, because of, not in spite of myself.” With these elder women and friends whose families were as unsteady as mine, I feel safe. They know my backstory and my present states. The emotional weather patterns I’m still learning to discuss in plainer language.

Over the past couple of weeks, or maybe even the last month or so, my anxiety worsened. I’ve sought out supportive people. I’ve found myself stuck in public spaces, needing strangers’ help. My memory lingers on an afternoon at the library last week when I, mid-shutdown, didn’t feel present or safe because my processing had slowed to near halt. I monologued and tried to determine what I was feeling (mostly anxious).

And so an undergrad whom I barely knew sat with me, as I tried to calm myself — to slow my breathing and find a pastry and coffee in the atrium. I remember being ashamed and grateful — into infinite loops, it seemed — the feeling burdensome and too much. But there I was being helped by a young woman kind enough to sit with me in the overwhelm — my overwhelm. I apologized a lot. She thanked me as she headed to class, and I safely walked to the bus stop. I couldn’t understand why she was grateful.

Vulnerability is terrifying. I spend much of my professional life hiding and explaining away the seemingly quirky things I do (read as: appear visibly Autistic when I stim and monologue). But when I become utterly overloaded ( >7 out of 10 on my loosely defined anxiety scale), passing is no longer an option. Unless I want to shift into the unpleasantness of uncontrollable crying and rocking that comes during my rare meltdowns. All I can do is try to steady myself. That’s enough to exhaust me.

Growing up, all I wanted was someone to sit with me and tell me what I was experiencing was real. That I would be safer soon and that it was okay to feel however I needed. I desired presence. I’m reminded of one of my favorite scenes from Lars and the Real Girl:

“This is what we do when tragedy strikes. We sit.”

I’m finding community, even in my hardest weeks. I’m grateful for friends who have learned how to be present with me when I’m struggling — for those who ask how I am and accept the honest answers. They steady me, even in overwhelm. For safe spaces and people, I give thanks.

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

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

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

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

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

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

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

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

Here.
Is.
Enough.

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

At first light

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

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

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

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

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

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

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

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

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

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

Cat story

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

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

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

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

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

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

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

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

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

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AT THE INTERSECTION OF BEAUTY, BEER, HOPE AND HEARTACHE

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