Ask an Aspergirl

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

Category: autistic in academia

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.

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.

Creating mental flowcharts and colorful maps for disclosing disability

I remember making a color-coded map of whom I could trust in my department and sharing it with my advisor. It was scrawled in pen, categorized into red (unsafe or ineffective), orange (unhelpful or neutral), and green (safe to disclose) areas. She responded positively, saying that my map was accurately drawn and surprisingly descriptive. We talked about how I’d managed to identify safe people — those with whom I felt comfortable sharing my backstory.

I don’t like passing. It requires energy that already feels depleted. It makes me feel like I’m contributing to ableist attitudes, the implicit assumptions that people like me don’t exist in PhD programs or conduct developmental disability research. Nevertheless, passing feels like safety; I avoid the gaze of people who refuse to acknowledge both my strengths and impairments, those who still believe in the high functioning vs. low functioning dichotomy.

I’ve grown familiar with creating another kind of narrative: A vaguely described chronic health condition that distracts from my graduate studies (read as: The overlap between generalized anxiety and autism, when my social filter collapses and my executive dysfunction is apparent).

My earliest forms of disclosure were elaborate metaphors describing enough anxiety to power a small city. I waited for the visible discomfort or displays of acceptance that followed these conversations. Later I learned to listen for personal narratives of disability — those who alluded to lived experiences with mental health conditions or those whose stories contained gaps, maybe paragraphs they assumed others would find overwhelming.

I suppose I’ve created mental flowcharts for disclosure as a kind of sensemaking process. A way to manage the fear of coming out to others about being Autistic, when I sometimes doubt myself. I’m reminded of Nattily’s post about wanting to be autistic — how that response would be odd for individuals without spectrum traits.

Finding patterns and labeling things are inherently comforting acts for me. To say, this is who I am, who I’ve always been, why I struggle to do seemingly easy tasks and excel at seemingly difficult ones. This is my narrative.

This Monday afternoon and Tuesday morning, I meet with the autism specialist in town, the lady who did my screening a few months ago during our consultation. I need her to see the Autistic traits that will impair my performance duing Oral Exams, but also brought me to academia. I need her to recognize my gifts and struggles, to document the extent of my need for accommodations. I need the autism specialist to see me.

A friend of mine invited me to submit an article about Autism Acceptance Month for her community newsletter. I tried writing from an academic perspective, to maintain a sense of professional distance, but couldn’t seem to find the words. Then I shifted into my own account of being Autistic in academia and found my narrative — in preface written and poetry shared.

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

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,

An internalized sense of wrong

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

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

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

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

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

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

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

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

Relatable narratives at work

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

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

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

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

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

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

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

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

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

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

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

Autistic in academia (or how I ended up inadvertently studying myself)

“Many of us will become interested in psychology and the helping professions along the way, either because of our diagnosis or in search of it. We find we want to nurture and help others in their journeys because we know how hard it can be.” ~ Rudy Simone, Aspergirls

I am a PhD student whose primary research interest is the social experiences of autistic young women — the supports available for them and their everyday experiences. I am also an autistic woman — this is not a coincidence. In undergrad, I remember writing my freshman seminar paper on the consciousness-raising groups of second-wave feminism. These second-wave feminists spoke of how “the personal was political.” They saw how their individual experiences were reflective of community-wide issues.

For me, the personal has become academic. I first started reading about autism, specifically Asperger syndrome, because a friend of mine in undergrad had mentioned her diagnosis. Rather than be the person who asked nosy questions or said something unintentionally offensive, I decided to pick up Tony Attwood’s The Complete Guide to Asperger Syndrome. I read it cover to cover, and then began collecting blog entries and online articles in a folder on my computer. Perhaps I identified with the experiences of individuals on the spectrum, but I don’t think I realized that at the time. I just found the subject fascinating.

It wasn’t until grad school, after I was asked if I ever wondered about being on the autism spectrum, that I started to consider the possibility that I was autistic. I have a bachelor’s degree in psychology, so my first concern was that I’d somehow convinced myself that I was autistic: “What if I have psych major syndrome?” (like medical student syndrome – when med students become convinced they’ve contracted the ailments discussed in class – but for mental health conditions).  I called my friend who was a special education (SPED) graduate student while I was in undergrad.

Me: When you first met me as a freshman, did you ever wonder if I had Asperger syndrome?

SPED Friend: That thought crossed my mind, but I noticed how well you got along with the students I mentored, so it didn’t really matter.

During the spring of 2013, I read everything I could find about the experiences of autistic women, starting with Rudy Simone’s books and later finding autistic adults’ blogs. That was also my first semester in the PhD program. As I read about autistic adults’ experiences, I suppose I was weighing them against my own. I remember talking with my SPED friend and her noticing I seemed less afraid of identifying with the Asperger label.

It was a strange time because from reading the academic literature, I knew Asperger syndrome would be absorbed into the autism spectrum that summer. What would I call myself then? I settled on Aspergirl — it was safe, perhaps because it was never a clinical label. It was a portmanteau (Asperger + girl) created by another autistic woman. I kept writing for myself, while I read about the experiences of autistic young adults in my coursework.

This summer, both of my research projects concern the social-emotional experiences of autistic women. When asked how my research interests developed, I’m running out of  ways to allude to my autistic self. At most, I can mention my friends with Aspergers or how I identify with this population when I talk with fellow educational researchers. I wonder if it would be easier to be ‘out’ (of my autism closet) if I had a clinical diagnosis.

There’s one person in my department — my PhD mentor — who knows I’m autistic. She has been amazingly supportive, but sometimes I imagine what it would be like if I could openly acknowledge this part of myself.

“I am an autistic woman whose research is directly informed by her lived experiences.” Now if only I could say that aloud more often.

Coaching Along the Spectrum

Because nobody is an island.

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Autism Friendly Holidays & Pony Rides

sleep wake hope and then

life as an autistic (former) grad student

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AT THE INTERSECTION OF BEAUTY, BEER, HOPE AND HEARTACHE

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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]

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