Ask an Aspergirl

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

Tag: backstory

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.

Food is medicine, a poetic narrative

I can picture us sitting around that table, standing in the kitchen, sitting on the couch. They say food is medicine, but who are they — have they seen us? Met us?

I can’t visit him — hurts too much is what he didn’t say; would never say — wish he’d say. Because then we would know. And yet we have responsibility for those untold stories, unspoken stories. Why haven’t you said anything before?

We don’t know how to talk about these little tragedies — the pain of never telling — when food becomes poisoned by your words. It would become medicine much later; after lapping trees and feeding cattle; gathering cornstalks. Discarded. Repurposed.

Like you were, but would never say — left only with your words — the streams of your anger. We had to assume. In your transparent pain revealed in anger. It came to the surface easily. In cars, closed off spaces, in rooms. We don’t talk about this is what they’d never say.

Until she did.

Slowly.

It hurts.

This forgetting to breathe between words. Pen scrawling, ripping, gashing, gnawing. Still here, I wonder? Trauma does that. You doubt yourself, your words. The experiences that follow. Maybe it never happened at all.

This hurts. I know.

To talk about, to embody the she who was far away — not feeling, only thinking. A kind of distance that is terrifying. She was here. Heard as stories from long ago drip out, pour out. From that kitchen. 3 hours south of pain. He couldn’t visit, so you do.

Where food is medicine and people are kind; until they yell and you walk away slowly — mind half a mile away.

Distant.

What to do with this space. With us? Tiny bodies living through a storm. A barrage of words. Felt intentions that remain unheard, unseen, unspoken? I wish you could tell me what was wrong — with you? With us.

We remain here as echoes narrate a form we never knew. Of bits of tape and glue, promises you could never keep. You hurt too much.

Violently.

Terrifyingly.

Alone and stark — with only your words. You distance yourself from your own pain. Unsure of how you look or feel now. At this present moment screaming in her face. Do you see that man in you — you embody your own pain. Showing me what you’ve lost. I wish you could redirect this anger at its source. Why are you so afraid?

A rabid dog — hiding from its executioners — snarling, quivering. You hurt. I know — but I can’t care.

They shoot rabid dogs before they bite. Take them to the middle of nowhere before they’re gone.

Lost.

Alone.

Terrified.

But utterly dangerous.

And so they drove you to the edge of town. A small mercy. To be left alone, to hurt, without hurting. This is a desolate space. She leaves you here and walks away — her steps echo as they hit the ground.

You hurt.

I know.

But I must walk away and leave you here. Alone — in the not — and distance of what was. Wishing for what could be, but never was.

You left her here too. In a mire of longing — a sadness of imaginary could be’s.

Never was.

In the silence

following you

raging

screaming voice.

That echoes across a decade. In the what still hurts to speak.

And yet she does.

Slowly.

Painfully.

Willfully.

Stubbornly.

Until she is hoarse and waits for voice to return. She will be; is; for her and the hers that came before. Who hid in that shelter as the bombs came down.

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.

Overlapping, overarching narratives

I’ve been trying to have this conversation with my therapist for a while now: “Do you think I’m autistic? I remember when the possibility first entered my mind, it was because someone else brought it up.” “Do you think you’re on the spectrum?” “I don’t know,” I replied and then spent that spring semester researching the possibility. I called a friend from undergrad whose background was in special education.

“The question is not whether you have autism or are on the autism spectrum, but how you understand yourself and find a place that’s the best fit for you.”

I remember her saying to take all the time I needed with that process and not feel pressured to place myself in any sort of box. She mentioned how I didn’t sound so scared anymore about the possibility of being autistic. As I read books and essays about autistic women’s experiences, they resonated with my own. I made a series of Venn diagrams and journaled as I attempted to make sense of how these overarching narratives fit together.

It's in the overlap

I remember looking for the right words to describe myself — “Aspergirl, quirky, or socially different.” I didn’t want to call myself autistic if I didn’t meet the diagnostic criteria (which at that point would have been under DSM-IV, although I knew Aspergers would be absorbed into the autism spectrum that summer). Aspergirl was a self-identifier that seemed consistent with my experiences of not quite fitting and missing social nuances. It was a label noting difference, not deficit.

I’ve lived in this overarching narrative — that I was an Aspergirl (probably autistic young woman – but only self-identified) — for the last year or so. I found a community of like-minded women who shared their lives through blog entries and tweets. And yet part of me wonders if I’m actually autistic — maybe I’m just anxious, so I feel awkward in social situations and miss others’ cues because I can’t see past myself.

Imagined conversation:

“Do you think I’m autistic? You’d mentioned when I first started seeing you that my social confusion could just be due to my anxiety, but why does that identity resonate with me?”

“I can’t tell you who you are. We could talk about autistic traits, and you’re familiar with the diagnostic criteria. But I think you’re trying to figure out what being autistic means — to you, your experience, who you’ll be, in the becoming.”

I’m reminded of those Venn diagrams covered with notes about my interpersonal history and longstanding observations. It’s in the overlap where things make sense — familial trauma, Aspergirl self, and generalized anxiety intermingle on a sheet of notebook paper.

“I felt like someone had to call me that for it to be so — to claim that identity [as a poet]. I have the authority to claim that identity for myself.” ~ writing group facilitator on labeling oneself

“If you want to further explore the possibility that you’re on the autism spectrum, there’s a clinic nearby campus where I can refer you — but I also don’t want you to feel limited by a label. Remember this is a sacred space where you’re free to determine who you are.”

So for now, this is where I am, pondering these overlapping, overarching narratives, knowing that identity isn’t static.

Womyn’s Herstory Month

remind me everything is okayMarch is Womyn’s Herstory Month. The lady who facilitates my writing circle challenged us to “write one daily, poem, story, reflection, song, blog, memoir, tribute, or manifesto about womyn.” I’ve done so via the Tumblr as I’ve pondered my experiences as a woman and the mentors I’ve had. I’ve thought about how sharing our stories can be a way of reassuring others that it will be okay.

There are times when I get tired of explaining myself — why particular stressors are so anxiety inducing or why parts of my familial history still evoke a dull ache. It’s so validating when I begin to tell my story and I’m met with the mutual understanding that comes from a shared lived experience.

“You get it, don’t you? I’m not exactly sure why, but I suspect you have a story like mine. I don’t presume that you want to share it with me, but it helps that you’re listening. That you ask fewer questions because you know what it’s like to feel complicated, even though that’s no fault of your own. I wish you didn’t have to get it, but I’m glad you do.”

Sometimes storytelling happens in the car at the end of the day, when your social filters have stopped working or you’re just so exhausted, you let them come down. Other times, you hear that pause in their story — you have it too. The parts of your life you also avoid sharing in polite conversation. You don’t really want to hear about that do you? But then you tell your story and they recognize your experience in their own. Stories are powerful.

When I find a friend, who gets it — really gets it — she becomes the person I finally feel safe enough to text or message via social media platform when things don’t feel okay. When I’m sitting in a waiting room terrified to see the chaplain fellow because I still find men intimidating. When I’ve just ended a phone call and need someone to help me process that interchange. When the waves of anxiety hit so hard I feel like I’m falling apart — again. When I need to acknowledge that I’m hurting (“so many sads”). These are the women who will support me in these moments; they don’t need me to be anyone other than myself.

Sharing one’s story makes it feel real. I think that was the hardest part of growing up in a home where my closest confidant was my journal. I feared that if I couldn’t describe the experience, it didn’t exist. Even into college, I wrote notes to myself (and prayers) trying to figure out what I was thinking (and sometimes feeling — those words seemed hardest to find).

I’ve shared my backstory in bits and pieces over the years. I suppose I first began this process in undergrad, when I walked around the track surrounding the man-made lake and talked with close friends. “So I’ve been going to therapy and it’s been helping.” The first poem I ever wrote in writing circle included these lines: “Cacophony is the sound I hear from my room, as I sit huddled over a book, again — weekly, monthly, it feels like forever; as we sit with the door closed and the lights on.” I learned to share the words I’d written on the page before me. My notebook was a conduit for further conversation.

So this March, I’ll keep writing, while I remember that “I deserve to take up space, even when I have no words to say, because I matter.” Let us continue to intently listen to the stories of our fellow women and create spaces where we feel loved and supported.

Polaroids sent from the past

polaroid by ed__209

polaroid of polaroid by ed__209 (via Flickr: http://goo.gl/OsKH32, Creative Commons – Attribution, Noncommercial)

As I made the phone call to my childhood pastor, I had a series of questions handwritten in the notebook sitting beside me on the plastic kitchen table:

How did our family look to you? What roles did mom and dad play — especially in context of what you knew? To what extent (if any) did you suspect familial discord — why or why not? What were your perceptions of me growing up — of our family, of mom?

I had emailed pastor the previous week, asking if he’d be willing to have a conversation about my experiences in his congregation while we attended there. I told my therapist a few weeks prior that I was dealing with familial grief as I tried to make sense of my childhood narrative. I wondered if anyone outside my family noticed that we were troubled. I’ve long since acknowledged that my parents did what they could to take care of us, but at the same time there’s a vague sadness, sometimes frustration, with that past.

I’m writing because I’ve wondered about some of my experiences back then; since we moved, I kept up with few people from that time in my life. Growing up, my family was rather insular, so since undergrad, I’ve been trying to make sense of my childhood and early adolescence.

When we began the conversation, I acknowledged my fears about making that phone call — how I didn’t want him to think I was asking him to betray my parents’ confidence, if they’d shared anything with him. I just wondered about his impressions of our family. He answered some of my questions, and I discussed my life now — finishing undergrad and beginning grad school, how I promised myself I’d see a therapist when I started college (how it helped), and connecting with like-minded women who validated my story.

I felt surprisingly safe self-disclosing and took some notes. His recollections of me were relatively consistent with my own memories of being a “quiet, shy, self-conscious” girl (who I recognize was also pretty anxious). He said I was bright and intuitive even then, and that he was proud of me. I felt affirmed by this process of further developing my internal narrative.

After the phone call ended, I messaged a friend of mine who knew about the situation — the one who encouraged me, saying, “This is so brave and cool of you. I feel like I need to tell you that you astound me with your courage on a regular basis.” I remember sitting on my floor couch reading her message before making the call — I reminded myself that I was brave in my attempts to fill in some of my childhood recollections.

Memory isn’t static. It’s dynamic. Ultimately we are the ones shaping our own narratives as we ponder details consistent with our stories and neglect those that don’t seem to fit. I’m learning to honor the emotional truth of my story, especially how it still reverberates with me now.

I feel as if I’m making a timeline of Polaroids sent from the past, but I’m waiting for the blurriness of the images to become a scene that makes sense. I long for a coherent narrative and maybe in the process, I’m arranging these images into a recognizable whole. My friend says, “It’s like you’re uncovering your story.” Maybe I’m creating it, too.

Resilience: Book review and further ponderings

resilient lady on book coverTherapist lady: “While you’ve got your notebook out, there’s a book I think you might find to be useful — Resilience: The Science of Mastering Life’s Greatest Challenges by Southwick and Charney.”

Aspergirl: “You’re going to have to spell that.” *Writes memo to self in pocket-sized purple notebook (also filled with jottings and poems).*

Dear readers, as I’ve previously discussed in Backstories, I’ve experienced periods of emotional isolation and attempted to make sense of my own internal narrative. In the space between a couch and chair, I’ve talked through how I see the world because of events in my past and how my sometimes irrational, yet emotionally valid, thinking shapes my current perceptions of the world.

I’m slowly learning to set better boundaries with people who’ve hurt me in the past and remembering to spend time recharging after problematic social  interactions. As I often remind myself during these times, this isn’t easy, but I do believe that this is doable. You will get through this, slowly but surely (and then you will practice intentional self-care — read as marathon Community episodes with tea).

My therapist sometimes gives me homework assignments to do in the weeks between our sessions. The funny thing is that she’s relatively non-directive, so usually her suggestions come in the form of “might help if you…” or “I wonder if you could…” and I tend to at least try what she’s mentioned. Reading Southwick and Charney’s book about the neuroscience and social science research concerning resilience seemed like a worthwhile use of my time (1).

In the book, resilience is defined as “the ability to bounce back after encountering difficulty” (p. 6). Southwick and Charney cite Harvard psychologist George Vaillant who uses a vivid metaphor to describe resilient individuals: They are a “twig with a fresh, green living core. When twisted out of shape, such as a twig bends, but does not break; instead it springs back and continues growing.” I remember relating to that description because it resonated with me — I’ve been learning to listen to my backstory, while I appreciate how I’m endured both in spite of and because of it. I suppose I’m resilient.

I finished reading Resilience today. It’s the kind of book that I needed to read in small doses, sort of like one would practice creative writing or mindfulness meditation. I found it to be incredibly useful, partly because it helped me to develop some context for my narrative, and also because it informed my future self-care (so when I’m feeling _____, I could ____). In the book’s final chapter, after telling resilient people’s stories and explaining  the brain’s responses to painful events, Southwick and Charney list 10 resilience factors for individuals (p. 171). These factors are listed below and described in more detail in the preceding chapters:

Fostering optimism; facing fear; solidifying moral compass; practicing religion and spirituality; attracting and giving social support; imitating resilient role models; physical training; mental and emotional training; enhancing cognitive and emotional flexibility; and finding meaning, purpose, and growth

The illustration on the book’s cover reminds me of the young woman that Natalie Merchant describes in her song, “Wonder” — “With love, with patience, and with faith; she’ll make her way”  (2).

  1. Resilience: The Science of Mastering Life’s Greatest Challenges by Steven Southwick and Dennis Charney
  2. Natalie Merchant’s music video for “Wonder” (It’s basically a huge sing along, and I love it.): http://youtu.be/6zpYFAzhAZY

A year ago tomorrow

My practicum supervisor asked me, “Do you ever wonder if you’re on the [autism] spectrum?” and mentioned she saw me struggling to keep up with the demands of my field placement. I remember feeling blindsided by that line of inquiry and later calling a friend who works with autistic adults as I tried to make sense of things. She listened well and then responded in a way that I found just reassuring enough to get me through the weeks of uncertainty that followed:

This is an opportunity for self-exploration, maybe even a  freeing experience.  This can be one more way of making the world work for you, a process of finding where you can best use your gifts, but don’t look too far ahead. Maybe try illustrating your thoughts. Let me tell you a secret, “No one knows what’s going on, and some act better than others.” Ask yourself, what does [Aspergirl] need to get through ___________?

My friend reminded me that things would be okay, and they were eventually, but it was an emotionally exhausting few months. I was incredibly grateful that I’d started seeing my therapist earlier that month, so I had someone  with whom I could talk and cry things through. For every time I expressed how broken and odd I felt, therapist lady continued to remind me that I was doing okay, all things considered:  “I would be more surprised if you weren’t feeling like this considering all you’re going through.” It was good to have a safe person then, in the midst of how messy life seemed.

I made a list of all the people I’d cried in front of that week — my field supervisor, practicum supervisor, research mentor, and my therapist — and noticed that I was gradually learning to be emotionally vulnerable with people I trusted. When I reach my anxiety threshold, I tend to begin talking with whomever is around, so I tried to surround myself with safe people. I started seeing my chaplain friend around that time as well, which helped since she was someone who listened intently with no expectations for what role I should play in the conversation. I still find that terribly comforting when I’m having a long week.

I remember walking with my practicum supervisor, just outside of the classroom where we met, after she approached me about applying to the Ph.D. program. No one else in my program knew that I was planning on leaving at that point, so she discretely discussed the next steps in that process with me. I sent the emails, wrote the application essays, updated my CV, and met the program chair. Switching programs seemed possible, but scary (change is hard, dear readers).

I’ll fast forward to a year ago tomorrow. It was a Friday, the day I got the email: “I wanted you to know that your transfer has been accepted into the Ph.D. program.” I was sitting on my floor couch and was so excited that I ended up texting the various people who’d supported me during that ridiculously long fall. I still have their responses saved on my phone. I reread them when I’m feeling completely and utterly anxious about grad school.

Ten Going to Hug YouThank you friends who sat with me — via email, texts, phone calls, and even in-person — as I tried to figure out what I was doing with my life and for reminding me that things would be okay regardless — because they were, eventually.

Deep roots

Poem pieced together from a series of text messages about pondering one’s spiritual background — reminds me of those word magnets stuck to my refrigerator:

These roots are deep and yet I wonder if I’m fading from faith — as I remain in the grey, not so afraid of it anymore. I’m a person of some faith, agnostic to liberal Christian depending on the day, post-evangelical, whatever… but whatever I was or am or will be, I am okay.

Although I still pray, it’s in the same way that I talk with fictional characters, so I find myself questioning the narrative. Must we feel shitty about ourselves — to be saved from what? Ourselves? At some point, I realized I’ve had entire monologues with god, never expecting things to change (just externalizing my grief).

Pondering a scene of how Christianity spread so quickly, “Black-and-white thinking in which god is good and man is evil” — because the grey is scary. We do what we’ve known, makes sense I suppose. I’ll pray, then talk myself through things — 1st to 2nd person doesn’t feel that different…

Bishop Spong thinks people started praying when they became conscious of self — someone to talk with even if they may be imaginary. Talking about religion is almost like a 2nd language steeped in culture and yet I think I’m getting a taste of what it’s like to live amongst the subculture; as I witness “people getting their praise on,” I feel like an outsider.

I don’t really fit within the typical church culture anymore. It’s a strange feeling — foreign, yet utterly unsurprising.

Coaching Along the Spectrum

Because nobody is an island.

The Little Explorers Activity Club CIC

Autism Friendly Holidays & Pony Rides

sleep wake hope and then

life as an autistic (former) grad student

Craig Nash

AT THE INTERSECTION OF BEAUTY, BEER, HOPE AND HEARTACHE

piper grace lynn

writer. feminist. human advocate.

recoveringmamablog

life, love, kiddos, recovery

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!

Talking mental health with Sam Dylan Finch.

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