Ask an Aspergirl

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

Tag: managing

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.

In the first sips of coffee

Until she walked out the door, the day had barely started — it was on pause in the darkness of her apartment; coffee mug left beside a screen of other people’s lives. In this cave-like space, the world remains at bay, email unchecked, lights low — eggs remembered via the light above.

She sits somewhere between worry and doing — alarm reminding her to “take her damn meds” rings loudly. Dose charted, day continues. Behind a screen of retweets and favorites, a series of hashtags, is a collection of stories; what #TraumaMeans, #OverloadMeans. Stories of not-entirely-strangers who know more about their lives than their neighbors do.

Until she walked out the door, into them sunlight, only now remains. Though future and past attempt to creep in — fears of support networks fading, the uncompleted deadlines, and the uncontrollable in-between. But this was now — in the first sips of coffee, in the barely awake, trying not to plan the day away.

She sits with the lives of people she’s never met — in sentence-long summaries revealing more than an hour of conversation. What would it be like to not talk around, to state directly? To live with, to exist beside this lingering fear of what might be? What might be is too close and too far away. She is here in-between.

Before she steps through the morning, she is here — bite to fork, fork to mouth. Rising for more coffee, to return to a seated position — wishing she could stay here; waiting for the day to begin.

Before anything happens, there is worry. As if it appeared rather than was self-created. She is worry. In the waiting for what might be, in the hope of continuing to try, imagining a what could be, will be, in the terrifying not yet. The being with these fears of leaving and being left. Of wondering what then and finding herself here in the wondering.

In the conversations with herself of “Is this supposed to be what I’m doing.” Yet I am here now. Not entirely sure where I’m going, but stepping forward, only to look back. You are here — like those signs in the mall orienting you to a dizzying space. In preparation for what’s to come, I want to experience now — to anticipate a will be for women like me and then create it.

This living in-between is the hardest space. The fear of not enough until it is tolerable. To be in this space of not knowing and fearing is exhausting. To talk through worry loops and the few knowns.

You are here. Waiting for a later being slowly created for women like you, for you, by you, and this work is disorienting. Not knowing how you fit, into a space of learned recognition. This is now. In cups of coffee and brief encouragements between the blank spaces. This is hope living between the known and will be.

This is enough — to sit with these lingering fears and coming acceptance. Knowing feels impossible, as I anticipate a murky hope.

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

On Being Autistic In Academia

I almost never reblog things, but Stella has amazing advice for Autistic grad students such as myself. So much coping tech and normalizing — helps so much.

Conditionally Accepted

AutismIn this guest blog post, Stella S. (a pseudonym) shares her experiences as an autistic academic, and offers advice for other autistic scholars (and everyone else) on communication, networking, and navigating academia while being visibly different.

The Impact Of Being Autistic In Academia

I’m autistic.

There, I said it in an academic space for the first time and even though I am writing under a pseudonym, it feels good. I was diagnosed later in life, after I became a PhD researcher (which I still am). Just because it took longer for me to know does not mean that you should call me “high-functioning” or “mild” or any other word that is supposed to make you feel better about my autism. I only identify as “autistic,” thank you very much.

I don’t personally know anyone in academia who is openly autistic. Due to this, I find it hard sometimes to make…

View original post 1,318 more words

Songs of disconnection and reconnection

Dear calves, you move me place-to-place — steadying me as I feel like shaking, am shaking, as body is here — brain across town. You linger with me as I hop and tap. Learning to remain here — pieces of me sustaining oneself.

Body and brain in disconnect, we find ourselves here — in the in-between. I fade, you see. Blonde eyelashes to block out the noise of outside — inside. Too close and too far away at the same time — trying to prevent an imminent shutdown. Letting it happen.

I wrap my arms around my diaphragm, trying to remember how to breathe, then sing instead. Keeping time in 4/4, 8/8, 16ths with my boots — shoes touch earth. Remembering how to ground.

Fading and remaining here — feeling in-between the tangles — finding myself here again. In the fear. In the death grip of pen to paper, I describe what I think happens when I fade away — both too far and too close.

Self-acceptance is letting myself go — practicing in the in-between. Letting myself just be there. In the fading being. Fitting. Belonging. Remembering to breathe, slowly and deeply.

You are here in this place. I am here in this place, she reassured herself.

It’s a mild form of dissociation, she said. I don’t lose time, so much as fade away in fear — to lose control is terrifying. To let body and mind part from utter exhaustion, to accept the fading feels like a loss.

Not me, yet me entirely; in this fear, I remain drawn back in rhythm and scripted dialogues — of a future calmer. Then now, of going on and then stopping entirely — pausing because she has no other option but to wait with a body betrayed — as her knees shake and mind runs.

She is here. Waiting with her breath — voice beside her.

The only way out of this is acceptance. Going through and eventually arriving at a place between utter exhaustion and latent calm.

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,

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.

Managing is an illusory concept.

Sitting in church, I wrote a poem about what it’s felt like lately living with generalized anxiety disorder (GAD). My refrain remains that GAD can be exhausting, but for me, it’s a manageable mental health condition characterized by chronic — sometimes functionally impairing — worry. It is an anxiety disorder I experience as an excess of thoughts that refuse to leave.

Of course, today would be the waves passage. I’ve lived in this metaphor for such a long time. At times, it is utterly exhausting, but to verbalize it is liberating. Yes, this is a thing. In all of the pain and shame of living in the fear and worry loops.

When you fear the waves will overwhelm and pull you under. These waves don’t just lap at my feet, not anymore. I cannot tell if these anxieties have lessened or worsened — maybe both. And so I live in this coping, managing, becoming. Surprisingly well.

For the past month, I’ve worked on preliminary exams — the take-home, 5 essays in one kind. I submitted the entire packet of essays via email to my PhD advisor, along with a note describing its contents. July was an utterly exhausting month, but if I’m completely honest with myself, the GAD has been unrelenting for some time. Like many people diagnosed with GAD, I can’t remember a time when I wasn’t worried about something.

I’ve grown familiar with heightened anxieties as stressors increase. When finals week approaches or I have a major project due, I feel completely scattered and lost. My thoughts feel as if they will overwhelm me. My brain goes to the place where my social filter goes to die. Perhaps because whatever self-regulatory skills I’ve learned over the years have been forgotten. Instead I focus on coping with the present moment, so I can escape the inevitable worry loops that arise.

I imagine managing as an act that will somehow make the GAD easier to ignore. Really though, I’m learning to get through these days. I make task lists and daily schedules during particularly stressful times in the semester. I talk to myself as if I’m a preschooler, rather than a PhD student in her mid-20s. In these moments, I try to remember that I’m struggling and whatever I need to do to return to a steadier emotional state is okay. This is managing.

Details and gist: The interplay between cognitive reasoning and emotional reasoning

When I think about people I know well, I picture the first page of a script — the part listing their preferences and backstory. I’ve noticed that although I’m not particularly intuitive about people, I can make sense of them using intrapersonal details. Maybe that’s why I like television commentary. Television writers know how to analyze characters and scenarios in ways that make sense to their readers [1].

My memory for intrapersonal details helps me maintain relationships. I’ve read about the dichotomy that autistics can experience between cognitive empathy and emotional empathy. Although we have trouble figuring out what someone might be thinking or feeling based on nonverbal cues, we can make sense of their experience using reasoning skills. I’ve learned to think of back-and-forth interactions as a logic puzzle: Based on what I know about this person, what could I say next?

Using cognitive reasoning to fill in gaps in emotional reasoning is probably a workaround I developed to ease myself into social situations. I don’t know what to say, so I imagine myself entering the dialogue before I initiate conversation. As a kid, I tapped adults on the shoulder to get their attention and asked questions before the time for asking questions arrived. I suppose after receiving negative feedback for these social behaviors, I learned coping strategies for this lack of social intuition.

The only problem with these sorts of workarounds is the inevitable reluctance to enter conversations that accompanies my process. Trying to find my place in groups feels like a game of conversational tetherball. I don’t know how to begin speaking without inadvertently interrupting the current speaker.

My memory for details at the expense of gist can be scary when I’m trying to navigate potentially unsafe situations. A few weeks ago, a seemingly creepy guy at the library hugged me without prior warning (certainly didn’t ask for my consent). I didn’t recognize how disturbing his behavior appeared until he was already encroaching on my space. I missed the prior cues that he didn’t respect others’ boundaries.

I’m learning to avoid blaming myself when I miss these sorts of nonverbal cues. Yes, maybe I could have seen the signals earlier and avoided a scary scenario, but it wasn’t my fault that happened. Sometimes I love my detail-oriented nature. I remember people’s backstories in vivid detail, as if they were characters in a rich narrative.

When I talk with people who have been through familial trauma, I know what to say to them (and what not to say): Partially because I have shared experience, but also because I can see their narrative as a concept map — how their present and past intersect. This skill helps me listen and accept what they’re saying without needless questioning.

As frustrating as it can be to miss the forest for the trees, I’m “practicing being proud” of my memory for details [2]. My passion for information (and probably my path to graduate studies) comes from the same place that leads to missing gist. I can acknowledge and accept both of these parts of myself.

  1. http://www.avclub.com/tv/in-treatment/
  2. http://www.thenthdegree.com/proudpoem.asp

Expressive mediums: In crayon, poems, and imagery

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

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

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

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

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

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

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

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

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

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