Ask an Aspergirl

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

Category: adult diagnosis

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.

Seeking narrative and secondary characters

Last week, I found myself in my therapist’s office, trying to explain why oral exams are utterly terrifying. These comps feel like a manifestation of my disabilities — the delayed auditory processing and pragmatic language impairments — not a demonstration of everything I’ve learned in the PhD program. There’s a gap between my written and oral language, between the thoughts in my head and what I’m able to express — especially when I get anxious. In these moments, I feel so lost — stuck in a space I’m only beginning to understand.

I’m learning to be visibly Autistic and slowly finding allies in my department. The professors who will acknowledge their own vulnerabilities feel safest. In these conversations of invisible disabilities, I feel less alone. We reach a point in these talks when I realize I could continue to remain at a professional distance — talking about my research, not me — instead of showing myself. It feels like a painful kind of show-and-tell. These are my struggles; I’m learning to live with them. How can you help?

The few professors I’ve told I’m autistic, those with whom I’ve shared my narrative, have been surprisingly supportive. So far, my allies consist of special education professors and a statistics professor. In these offices, I feel heard — like what I’m saying makes sense, that it is true, that the supports I’ve requested are reasonable. They are making room for me.

This past week has been a series of phone calls and meetings with helping professionals who will support me in the accommodations process for Orals. A few days ago, I had my intake interview with a student clinician at the University Assessment Center; I began the 4-6 week waiting process for an ASD evaluation. I met with the accommodations coordinator at Disability Services later that afternoon.

So how am I feeling in this flurry of scheduling and questions about how I know I’m Autistic? In between the waves of overwhelm is a sense of relief, a slow dissipation of fear. I remember sitting in the tiny conference room, with a round table, two chairs, and a whiteboard, being utterly terrified. Waiting for the phone to ring, readying myself for intake, I spread my notes and diagrams before me. This is me; this is my story; in 30 minutes, I will recall two years of manifested ASD traits. I felt I needed to defend my narrative; fearing I wouldn’t be believed, I presented a litany of evidence.

I can recite portions of that DSM-5 entry nearly from memory: when demands exceed the Autistic adults’ coping skills; this is when people like me fall apart. When we convince ourselves we are broken and wrong, developing shame as we learn to hide. Before we found there were others Iike us; we thought that we could get better, if we kept pushing ourselves.

For me, help-seeking is a recent practice. I’ve learned to send texts or show up familiar places when I’d much rather hermit. In these moments, I’m asking others to accept me in the midst of stuckness — in the shutdowns when I talk at a friend, trying to transfer the flood of words in my head to the space between us.

Self-acceptance is a strange process. I notice my quirks, the traits that make me noticeably Autistic, and feel so weird. Othered by a tendency to get lost in my thoughts and completely forget why I entered a space — forgetting about time and place entirely. Noticing shame doesn’t dispel it. But I’m learning to have these conversations that create space for myself. To check in with friends mid-monologue, to try not to apologize for who I am — my way of being in the world. It’s hard.

Sometime I don’t believe myself when I say I’m Autistic. Perhaps because I lived alone in this narrative for so long, not even able to claim it as mine. A story of finding workarounds and people like me in an ill-fitting context. To realize all of the reasons I struggled in clinical work are why I thrive in research. To let myself be odd. To stand in a crowd, amazed as the music of that evening’s concert surrounds us and the room is stimming. We move in the rhythm of that space.

I am learning to accept myself in community — to practice being proud and let others in to see my process. In the hurt of being myself, I am learning to let others support me. As I openly acknowledge that I had a shutdown earlier that day and let myself feel the surprising support that follows. I’m learning to cope, even though my circumstances are still exhausting at times. I’m passing less. I’m letting people help me. Perhaps in this interwoven narrative of why did no one notice is another strand: How to manage, even thrive now. And so, I keep practicing.

Serpentine hallways and waiting rooms

As I took the elevator to the private mental health clinic, I felt vaguely terrified. The hallway of the third floor office space was serpentine, but each entryway was clearly marked. Law firms, clinics, and assorted businesses lined the walls. I arrived early, hoping to avoid getting lost on my way to the clinic.

And so there I was, approaching the closed windowed help desk — ring bell, wait, and receive yet another stack of fun forms: what I sarcastically call intake paperwork. These past few years, I’ve filled out plenty of documents about my life. Intake feels like an exercise in describing everything that is wrong with me.

Who are you and why are you here?

I wonder that too sometimes, but I suspect you’re asking for my mental health history. “Describe in two sentences what brought you here today.” I don’t know if I can do that.

I’ve managed to fit my backstory onto a two-page document. It feels more succinct than the experience itself. I’ve grown familiar with waiting rooms. I know the rhythm of my usual therapist’s office, but the clinic was new (and therefore inherently scary). Preparing for new is still difficult for me. I spent the earlier portion of the afternoon at the neighborhood cafe. Routine is steadying on these sorts of days — when I can’t predict or plan for the events that follow.

In the half-hour before my session, I noticed myself fading away. I sat firmly in my seat. My brain wandered across town, filled with anticipatory anxiety about seeing the new therapist.

You know about autism. Perhaps you can help me in my sensemaking and workarounds. But maybe you’ll tell me I’m entirely wrong — invalidating my process, invalidating me.

That was the fear. The idea that my brain found utterly terrifying — hence its running and fading. Before leaving the cafe, I informed the kindly proprietor that I was feeling horribly distant from myself. I knew I could manage; I was already returning back to myself, but the feeling was still disconcerting.

The appointment itself followed the all-too-familiar script of first sessions: “Tell me about you and why you’re seeing me.” I talked. She asked questions. I attempted to respond, but often found myself lost in the dialogue. I stimmed through much of our conversation, as I wrapped green putty around my nail beds. By the end of session, new therapist informed me that although she has a special education background, she knew as much about autism as my primary therapist does. However another clinician in the building, Dr. M., has extensive experience working with autistic clients. In the meantime, new therapist agreed to help me apply to Disability Services at school.

My research background leaves me pretty skeptical of autism professionals, but I still asked to be placed on Dr. M’s waiting list for December. Perhaps she’ll have a cancellation, but until then, I’m in another waiting room. I left the clinic feeling proud of myself for going to the appointment and wrote post-session notes to myself. If I forget to summarize such experiences, my mind tends to negatively distort the details of session.

I wish there was a definitive ending to all of this. I didn’t get to leave the office triumphantly with an autism label in my hand. I still haven’t seen a professional with an extensive autism background. I know she exists, but mostly appears to see children and adolescents. I still feel like a unicorn. These in-between spaces are hard; I know I’m autistic — my social, communicative, and behavioral traits are consistent with an autism spectrum diagnosis — but I have yet to meet a professional willing to confirm my thought process.

For now, I remain “in this created space — creative space.”

We are ourselves, with little explanation. Needing no one else to fill in our gaps. We are our own. Here anyway. Coda. Yet this space, although not enough, is a starting point. Free from labels or to label as we wish. Existing together in a shared collage of narratives.

We are here in this place. We fit. We belong. And we are enough. Together.

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.

On labeling myself and wondering why I feel silly

Of course they are

“So that happened. I felt scattered all over the floor by the end of session:  ‘I just want someone to acknowledge that these things I’m experiencing are actually things!’ And of course they are.” <– text to a friend sent post-therapy

“In the space between weird and clinical label is a lot of self-acceptance and working through these hard moments (very real things).” <– note to self

Silly is dismissive. Silly says conciliatory things like “I’m sorry you feel that way.” And yet sometimes I feel silly when I label myself. I need to hear someone outside my own head say, “I think you’re right. The characteristics you’re describing are consistent with the experiences of an autistic person. You’re autistic.”

Last week, I finally talked with my therapist about realizing I’m an autistic woman and wondering what to do with that information.

“I hear your experiences. I know they’re real, even though I’m not here to label you. But I’m here, and we’ll talk. I want to honor your narrative and self-definitions”

“What if someone in this room could tell you who you are — because you can. I see how hard you’re working to understand yourself.”

As I described the ASD traits I’d seen in myself and how I felt like I had to prove I was autistic, my therapist noticed I was growing increasingly anxious. I looked down at my shaking hands, reminded that my body tends to know I’m anxious long before my brain does. I’ve been seeing the same therapist for long enough to know that she won’t invalidate my experiences and yet finding the words to have this conversation felt terrifying.

My sister was one of the few witnesses to my growing up since my parents were distracted by their own issues. She lovingly reminds me that I was a quirky kid who wore a lot of sweater vests and used unusually large words for my age. I wonder if my autistic girlhood went largely unnoticed.

Maybe I’m waiting for someone else to confirm these experiences — to hear my narrative and help me make sense of it. Part of me still worries that I’ve created an unnecessarily elaborate explanation for why I have trouble fitting in with others. But last session, I asked my therapist to piece together a list of clinicians who evaluate adults for ASD. I think I’m ready to see where this process goes, even though it’s scary.

I’m learning to trust my own thoughts and feelings as I find the words to describe myself. They are real and certainly not silly.

In search of a coherent narrative

But seriously legal pads are awesome

“But seriously legal pads are awesome” by Derek Schnake (CC BY-NC-SA 2.0)

I can picture myself in a series of spaces in which salient conversations happened:

Consultation room where I pondered taking anxiety medication
Steps outside the local cafe where I grieved for lost things
Office where I felt blindsided by expectations I couldn’t meet
Between two chairs where I alluded to the possibility of being an autistic woman

I suppose I’m in search of a coherent narrative. I know what happened and when, but the hows and whys are much harder to understand. When I blog or write poems about these perplexing, often emotionally fraught, scenes, I’m recreating what happened. Maybe I’m looking for patterns in the events that led up to that moment and the ones that followed.

Lately I’ve been making lists about why I think I’m autistic (or to use the DSM-5 verbiage — meet criteria for autism spectrum disorder). I’m not sure who I’m trying to convince that I’m autistic — myself perhaps or the imagined clinician who asks why no one noticed me earlier. I remember talking with my previous psychiatrist:

“So it says here [in your chart] that you’re concerned about having Asperger syndrome.” “I wouldn’t say I’m concerned,” I reply. “It just seems like a strong possibility in light of my experiences.”

“So why pursue an ASD diagnosis in your mid-20s?” I ask myself. I’m still not sure if I have a concrete answer. Perhaps so I could request workplace accommodations in the future. That sounds reasonable, right? But it’s more than that.  I’ve been trying to account for my struggles at work and social settings that remain unexplained by GAD or longstanding familial conflict.

“If you’ve managed for this long, maybe you don’t need a diagnosis.” “Depends how you define managing,” I’d counter. “I started a blog as a repository for the complicated thoughts and feelings I had about someone else labeling me — an armchair diagnosis, couched in an open question. I left my master’s program because I couldn’t adapt to its ever-changing professional environment. I thought there was something wrong with me. Now I think there’s something different about me. I would like to know what that is. I suspect it’s autism.”

I’ve been trying to talk with people in my offline life about wanting to be autistic. Mostly this has manifested as references to my previous posts sent in emails or carefully written on legal sheets (1) and forwarded links to other autistic women’s stories (2, 3). I want my close friends and mentors to understand my thought process, but it’s hard to find audible words. Instead I’m relying on written ones to serve as conversational bridges. When the words do come, they arrive in floods I can’t seem to contain.

“So what do you want to do with these questions of identity?” my therapist asked the last time we talked. At that point, I didn’t know how to answer. Maybe I still don’t, but as I talk at/with friends about this search for a coherent narrative, I’d like to explore the possibility that being autistic is part of my story.

  1. https://askanaspergirl.wordpress.com/2014/04/24/overlapping-overarching-narratives
  2. http://notesoncrazy.com/2013/07/i-think-i-need-this/
  3. http://autistwriter.wordpress.com/2012/05/04/cara/
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