Denver University Communications Discussion Question

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JACOB ABRAHAM
(Dis)engaging with Asperger’s
An Autoethnographic Approach to Neurodiveristy and Interpersonal Relationships
ABSTRACT I examine an interpersonal relationship that propelled my further understanding
and eventual diagnosis of Asperger’s Syndrome. Using autoethnography, I seek to understand
emotions, identity, and interpersonal relationships better by narrating key moments in the
relationships, interactions with a mental health professional, and reflexive analysis. My work interrogates how accessible a research method autoethnography is for someone with Asperger’s.
I use my experiences to share with readers what it is like to live with having trouble roletaking and reading and enacting neurotypical displays of emotion. KEYWORDS Asperger’s
Syndrome; Autoethnography; Neurodiversity; Interpersonal relationships; Reflexivity
I’m in my car on the long drive down I–, making my way from Tampa, FL to
Miami, FL. Winter break signals a momentary departure from the stresses of
being a graduate student. The sounds of Dave Matthews Band, my incessant
musical preference, cuts out as my cellphone rings through the car’s sound system. My mother’s voice comes through the speakers:
“We’re going to the design district tonight. The place is called Michael’s
Genuine Food & Drink. Put on something nice!”
“So, something genuine? Like leather?” I mock the restaurant’s name.
“No, jerk. Janet and Rachel don’t want to see your ass in leather or in jeans
and a pink tank top. Also Rachel has a nice job in New York and is down on
vacation, so don’t be too much of a pest.”
My mother knows me too well.
***
The everyday experiences of someone with Asperger’s Syndrome (AS) are
accompanied by excessive self-scrutiny and protection mechanisms against
the ever-present woes of being among those “particularly at risk for behavior
and emotional problems, especially depression and anxiety.”
Departures in Critical Qualitative Research, Vol. , Number , pp. –. ISSN -, electronic ISSN
-. ©  by the Regents of the University of California. All rights reserved. Request permission
to photocopy or reproduce article content at the University of California Press’s Reprints and
Permissions web page, http://www.ucpress.edu/journals.php?p=reprints. DOI: https://doi.org/
./dcqr.....
52
However, discourse regarding Asperger’s Syndrome took a drastic shift when
the American Psychiatric Association released the fifth edition of the Diagnostic
and Statistical Manual of Mental Disorders (DSM–) in February . The
revised version of the DSM eliminated the AS diagnosis, instead including
it within the broader autism disorder spectrum, igniting discussion about how
an AS identity is socially and/or medically constructed.
This modification exacerbates an ongoing struggle between those living with
Asperger’s and the medical community. For many, AS is not a disability; rather, it
is a welcomed marker of neurodiversity; an accepted, if not prideful, delineation
of difference. Although Asperger’s does not always bring with it the potentially
harmful consequences of stigma, those with AS typically face constant concerns
regarding missed social cues, potential emotional outbursts, and socially unacceptable speech, among other behaviors. This constant self-scrutiny is similar to
what Michael A. Peters describes as “anxieties of knowing.” Peters writes about
the academic’s existential dread of “reading, writing, speaking, thinking and
learning.” I extend this idea to show how knowledge that stems from reading,
writing, speaking, thinking, and (most significantly) learning influences the self.
***
The dining area at Michael’s Genuine Food & Drink, or MGFD as insiders refer to it, is an open two-story room with two sets of floor-to-ceiling windows,
large Rubik’s® Cube-shaped lighting fixtures, and a wait staff who always make
sure your drink is filled, water or wine.
My mother’s friend Janet and her daughter, Rachel, have stepped out for
their second cigarette; this provides an opportunity to disguise how poorly my
small bladder is keeping up with all the water I have been drinking nervously.
“How many times are you going to go to the bathroom?” my mother asks, as
I set my napkin down and slide my chair back from the thick wooden tabletop.
We are only two courses into the meal and this is my second trip to the
bathroom.
“As many times as they take a cigarette break,” I snap back, offering her a
wink and cherubic smirk so she knows my tone is only teasing. I rise from my
chair and slip around the red spiral staircase—already adorned with holiday
trimmings—past the oyster bar, and around the corner where the bathrooms
are located. The hallway is dark and poorly lit with a single, moody, yellow bulb.
There is a short line for the two bathrooms and I notice neither has a posted
gender sign. How progressive, I mumble to myself, aloud.
Once relieved, I put the lid down. That is what you are supposed to do, right,
put the lid down? It is a gender-neutral bathroom. I should make sure the space
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53
is clean for whoever might use it next. A men’s room urinal requires no such
courtesy, no courteous wiping down the seat or putting the lid down. Surprisingly, Rachel is the next person in line as I step out of the bathroom. Must have
finished her cigarette. Good thing I made sure the bathroom was clean. I give myself a mental pat on the back.
“It’s all yours. . .” I trail off as I notice the way she has swept her dark blonde
hair over to the right side of her head. I make note of how the dim, brown light
from the hallway’s yellow bulb makes the layers of different hair lengths more
obvious. This is not the first time I have made note of hair. Twice through our
first two courses, Rachel had brushed her mother’s hair out of an impending
dive into the salad as Janet excitedly leaned forward into her story about why
her living room has no furniture.
I make it back to the table and note someone folded my napkin and set it on
my chair while I was gone. Rachel follows not far behind me.
***
The aim of this story is to share my struggles developing relationships, romantic
and familial, and doing autoethnography, with and without an Asperger’s
Syndrome diagnosis. The work is in every sense a bricolage, a pastiche, inspired
by Carol Rambo Ronai’s “layered account.” I tell my story by patching together
pieces of personal narrative, reflections on memories, and theoretical scholarship. Like Ronai, I use asterisks to note shifts in voice and/or time. I recognize
autoethnography as a turn toward the production of “meaningful, accessible,
and evocative research grounded in personal experience.” I share this experience (of difference).
Autoethnography enables me to examine myself as both subject and object.
It expands upon Arthur P. Bochner’s call: “a healthy does of narrative is an
antidote to the essentializing proclivities of social theorists.” I write this
story to bring Asperger’s out of the DSM–, out of medicine’s essentializing/
pathologizing voice, and into the voice of the self. The story is a personal account of one life with AS. It is not meant to be a metaphor for everyone with
AS; rather, it is an example of the introspection one person with AS can offer to
others. This is an attempt to answer the call for more individuals with AS to
relate “their communication and ‘self’ awareness understanding to how they
manage social situations.”
***
“Can you believe he’s gone to the bathroom twice already?” my mother announces, thus prompting a conversation about what we agree is an unconfirmed, unscientific theory of “breaking the seal.” By coordinating with their
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cigarette breaks I was hoping to keep my small bladder disguised. But one
moment of mockery was not enough; my mother felt no need to stop this needling festival.
“So Jacob’s going to Texas this weekend to get laid.” My mother grins at her
free-spirited remark. I notice Rachel lean back in her chair.
I made plans a few weeks earlier to visit a friend in Texas. I was unsure if the
trip was a good idea, but had gone ahead and booked it anyways.
“Pam!” Janet chides my mother. “I said the trip was a bad idea.”
“I don’t really want to go anymore. I feel like I’m making a cross-country
booty call, and I feel like a moron,” I frantically spit out as our next course arrives.
Yes! Food. Food will occupy our mouths with something other than discussing my looming trip. I am pleased the food serves its purpose, blocking any
more words from coming out as ingredients go in.
After dinner, we wait for the valet to bring my mother’s car around, standing
in awkward silence as I stare at my feet to prevent myself from staring at Rachel.
She really is attractive. Janet’s phone rings. It is her husband calling, but more
importantly, a chance for me to be funny.
“Can I answer it for you?” I say, eagerly.
Rachel shoots my mother a confused look as Janet passes me her phone with
a fascinated inquisitiveness about what I might do. She must trust me.
“Janet’s phone. How can I help you?”
“Yes, she’s here, just a moment, please.”
“What a fucking goofball!” my mother says to Rachel. Janet laughs into her
phone as she explains.
I did good. Pleased with myself, the corner of my mouth is pulled towards my
left ear, forming a clever smirk.
As we get in the car, I tip the valet for my mother.
“I knew you’d like her,” my mother announces. “She’s just like the camp
counselors you used to come home chattering about when you were little, the
cute blonde ones.”
***
Despite my attempt at passionate, reflexive scholarship, given this work’s focus
on a perceived stigma, I must be wary of doing self-harm. As Sophie Tamas
writes, “I am thus grappling with the ethics of the autoethnographic voice.”
The potential of a transition from self-diagnosed to diagnosed reifies the concern of “being pitied or perceived as less capable.” Accepting and confirming
a label also has consequences because “the power to define a concept, in this
case, a health issue, is the power to legitimate and control the health issue,
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55
including. . . the power to make policy and treatment decisions.” I reclaim
some control as I write, but I also concede some as you read.
***
The next morning my mother texts me Rachel’s number. I want to see Rachel
again. I cannot stop thinking about how much I want to cancel my trip to
Texas. I want to talk to Rachel. I want to learn more about her.
I want to text her.
But what would I text her? If not for my mother dragging me to dinner, I
would never have spoken to her, would never have had the confidence to start
a conversation without feeling awkward or fearing I had broken some social
convention I am yet to learn how to perform properly.
As I wait for my pot of coffee to brew, I pull out my phone. Just do it, just
text her! Use logic; invite her somewhere. What is the worst that happens? She declines? Rejection is a feeling you know how to manage.
I stare at the screen for a minute before I begin: “Rachel, it was a pleasure
meeting you last night. . . . If you’ve got nothing planned this evening I’m free
for drinks or a meal if you’re interested. —Jacob.”
I get situated at the table out on the back patio at my father’s house, where I
am staying. I pull my phone back out to check my email, coffee in hand. I have
invaded the dog’s space. The patio is usually his, and to remind me of this he
plops himself down on top of my feet—as if to tell me he’s going to lie in his
usual spot regardless of where my feet are resting.
The phone beeps and vibrates in my hand. Rachel texts back. Success! I look
down at the puppy sitting on my feet, “Hudson!” I boom. He ignores me.
I shove him off my feet and force him to recognize my excitement: “She invited
me to join her and some friends for dinner!”
***
The divide between socially or medically constructed identities creates a noteworthy dichotomy for researchers as positionality shifts depending on whether or not
AS exists and whether it is considered a disability. I hope to trouble the distinctions as I collage together my recollections, captured interactions, reflections, and
analyses. I write in much the same way I think, relying on the linear nature of the
narrative I weave myriad voices through the story. Len Barton notes that disability studies is concerned with “issues of social justice, equity and citizenship which
inevitably necessitates addressing political issues and. . . ideological barriers to participation.” This work questions the potential barriers of both everyday living
and conducting autoethnography with AS. This essay addresses the (dis)abled
and (dis)engaged participation in everyday society and research.
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A person can reject a diagnosis of disability for a diagnosis of difference. In
making this decision, the disempowered can write their own narratives by framing Asperger’s as difference rather than disability. I write my own narrative as
evidence of difference. I write this entire piece as an attempt to fill in some of
the gaps.
***
A day later I am sitting in Ft. Lauderdale International Airport waiting to board
a plane to Texas. This trip is about to become the worst long-distance booty call
of my life, but I am too stubborn to cancel. I made plans, a commitment; I refuse to not follow through. I sit in the terminal texting not the person I am
about to visit. Instead, I am texting Rachel.
I would much rather be staying in Florida, hanging out with Rachel. We
have known each other for only two days, but she has already told me we are
going to become best friends. Last night we went to dinner with some of her
friends, and the two of us ended up sitting on her parents’ back patio drinking
from midnight till  a.m. But I take her too literally. I take most things too literally. The conversation is simple. She suggests music I should download and
listen to during my impending eight hours of travel. I joke about having to purchase cheap purple headphones from the nearby convenience store. She tells me
to listen to Counting Crows.
Rachel asks me about being a graduate student, and I offer to send her some
of my work from past semesters. There is something disarming about Rachel.
I find myself saying things I would not say to most people, revealing details
I usually keep to myself. It is probably her sweeping confidence that I cannot
resist. She claims to be excited to read my work, so I send something personal,
something revealing about my identity, something honest; I email her a course
paper about my suspicion of having Asperger’s Syndrome.
“You should write me something,” she texts, as I board my flight.
I take her request seriously.
***
Fortunately, all is not lost, because “if abstract rules specific to a social situation
are presented, or if social information is given in an explicit manner, adults with
AS can perform in a social situation more appropriately.” Furthermore, individuals with AS may pass as neurotypical or mask through the development of
coping skills.
***
Two weeks later I am back in school. I cannot stop listening to Counting
Crows; Dave Matthews Band has become an afterthought. Rachel and I have
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been texting nonstop, till  a.m. most nights, when I end up falling asleep midtext. A few days into the semester, Rachel texts me about the paper I sent her:
“So do you really have Asperger’s?”
I am unsure about answering her question. At this point in time my “diagnosis” is informal. My sister, a certified applied behavioral analyst whose job is
predominantly working with autistic clients, has told me I have AS. She is, technically, not qualified to diagnose anyone; but she is among several others to suggest I might have AS. And as an inquisitive and diligent student, I have done my
share of reading.
I give Rachel my elevator speech about my sister’s and others’ informal diagnoses. I tell her about some of the reading I have done.
“You should see someone to find out.”
I have thought about seeing a professional on more than one occasion, but I
always side against it. I don’t need someone to tell me who I am.
***
My suspicions regarding an Asperger’s diagnosis are common. Kristen F. Linton
suggests that people with AS are likely accurate in identifying a self-diagnosis;
however, the community itself faces concerns regarding marginalization.
Recognition of AS may alleviate some concerns in the sense that many with AS
are able to reject the stigma, instead, being proud of their difference. But, the
ongoing discussion regarding the DSM– creates a hierarchy within the autistic
disorder spectrum between high- and low-functioning individuals. The stigmas
associated with autism may not distinguish between high- or low-functioning,
and for some that poses a risk to their identity.
Many members of online AS communities believe couching the diagnosis as
a part of the autism disorder spectrum is a move to encourage “curing” Asperger’s. Such a “cure movement” threatens those with AS, as if a cure can or should
be sought, or as if something needs curing. Furthermore, the exclusion of AS
from the DSM– concerns those who now feel their identity is being erased,
their uniqueness disqualified.
The conversation regarding a cure further threatens to confound notions
of coping or masking. What happens to those of us able to mimic appropriate
behavior effectively? Are we cured? Are those of us who seek help no longer
worthy of receiving assistance? In what ways might the focus on a cure and an
erased label of identity put AS identifying individuals at risk?
***
Hearing Rachel say I should see someone makes me think differently. Her commanding tone, even through text messages, makes me reconsider.
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“I just don’t want to confirm something that exists in some diagnostic book;
it might make me feel damaged or broken. I know I’m not, but there’s just
something about the label that as much as I’d like to think having it won’t hurt,
I’m worried it will. It’s so much easier to just keep it informal.” I keep my
thoughts orderly and logical. “Maybe I’ll set something up for after I come see
you in NY.”
***
A diagnosis operates as demarcation of difference, bringing with it some evaluative baggage. While a diagnosis exists as a tool through which individuals can
construct their identity, that tool is in many ways out of their own hands. Thus,
self-knowledge can be in conflict with institutionalized knowledge and the perceptions of others. For instance, Sarah M. Parsloe and Austin S. Babrow write
that although an AS diagnosis can lead to self-defeatism, a diagnosis may also
provide neurodiverse individuals a causal explanation for previously inexplicable
inabilities. It is important to note these explanations of self, empowering or
defeatist, enabling or disconcerting, are fleeting and fluid. In one moment AS
might be attributed when I uncover a serious logical flaw while editing my own
writing but in the immediate next moment be equally responsible for crippling
insecurity when I have no idea how to respond to a text message. In this way,
AS operates as an explanatory scaffolding, but not one that necessarily absolves
existential anguish.
However, I suspect that in my case the power of diagnosis, compared to preemptive self-diagnosis, can be seen as negligible. With or without diagnosis, life
does not cease to occur. Before being formally or informally diagnosed, there are
still trepidations and inconveniences in everyday experiences, and a (formal or
informal) diagnosis does not alleviate those experiences. Furthermore, diagnosis
does not unlock any nuanced benefits that come from alternative ability; it is an
instructive framework. I overtly resist biomedical discourse, one that Sarah M.
Parsloe suggests frames disability as deviance. While Parsloe articulates how diagnosis also operates as a communally empowering discourse, I alternatively
conceptualize the diagnosis as a mere adjective that holistically encapsulates certain traits I know I posses. Any subsequent self-evaluation extends from the
lived consequences of those personal traits—as opposed to AS, the umbrella label that incorporates those characteristics. It is not terminology that measures
who I am; it is my performance of self through actions, choices, and reflections.
***
“Yea, but don’t you just want to know?” she remarks, having no idea how
confusing the idea of knowing is to me. “I think it would be good for you.” She
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disregards my concerns about the consequences of knowing; there is nothing at
stake for her identity.
“I guess,” I respond as I reach for my laptop from the other side of the sofa
and Google Asperger’s.
***
While working on writing these stories about my desire for a romantic relationship with Rachel, I arrived at the decision to meet once a month with a mental
health professional (MHP), who specializes in Asperger’s Syndrome. He knows
of my ongoing research efforts. I have given him copies of in-progress drafts of
this work. We discuss the dynamics of a formal and informal AS diagnosis, the
narrative chronicling of my everyday experiences relating to teaching, being a
student, family member, roommate, and friend, among other interpersonal
relational descriptions of myself. Working with my MHP allows me to understand myself more, allows me to practice identifying expectations of empathy,
appropriate displays of emotion, the politics of masking and coping, and managing emotional difficulties.
***
I spend the next half hour searching for MHPs in the area. I come across one
clinician’s biography on Psychology Today’s website who describes his treatment
method as eclectic. I like that word: eclectic. He also takes my insurance, which
is a bonus. My search ends there; this is the guy, either him or no one.
I text my parents, my mother first. “I’m thinking of seeing someone to find
out if I have Asperger’s.”
“. . . Okay, love you this much.” Clearly, my mother lacks concern. She adds
the “OK” hand-sign emoticon, which I understand, sarcastically means she loves
me only as much as the distance between her thumb and index finger. “I’ve always known you were crazy anyways,” she adds, joking with me.
My father will expect reasons and logic, I text him next: “So in new Jacob life
news I’ve decided I’m going to get tested for Asperger’s. . . . I think it’ll be useful
for my research and eventual dissertation.”
He responds: “WTF?”
I am taken aback by his reaction.
There is a stark contrast between my parents’ responses. I assume my mother
calls me crazy in an endearing way, but the acronym my father responds with
lacks the same jovial nature. I suspect he has long since forgotten that some five
years ago he was the first person ever to suggest I might have AS. I recall the
moment distinctly. He was visiting me for my birthday during my senior year
of college, and we were sitting in my car. He was filling me in on my sister’s new
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internship at a clinic for Autistic children. I remember his words as we made a
right turn out of my apartment complex, “I wonder if you’re on their spectrum.
Asperger’s at least. You’ve always been kind of different.”
Within ten minutes my father calls to discuss my text. What I have not told
my parents is that at this point I have not actually committed to the process yet.
I have not scheduled an appointment. I have not talked with any of my school
advisors. I have only spoken to Rachel and done some reading. But I play off the
conversation as if this is inevitable. I wonder why he is perturbed by my idea.
Perhaps he is holding on to the hope that I am capable of normalcy.
***
The potential power of a (formal) diagnosis is revealed in my father’s response. Although a diagnosis does not fundamentally change what I am, perceptually it has the potential to change who I am. If my father’s feedback is
indicative of the biomedical model’s diagnosis-as-deviance, my identity is
spoiled. Parsloe suggests pathologizing according to characteristics casts personal traits in a negative light, yet many people with AS work to discursively
strip diagnoses of their stigmatizing potential. I am forced to wonder how
my father, through his text message, rewrites my identity. Am I taken aback
as a function of how I perceive my father understands his son’s identity, or do
I question my own conception of self in light of a possible diagnosis? Either
way, the potential for AS and neurodiversity to be framed in a positive light is
momentarily jeopardized.
***
I have two and a half weeks till my meeting with the MHP. I know what to
expect. In elementary and high school I was sent to psychiatrists intermittently.
I hated the meetings every other week, meetings I hid from my peers, meetings
I felt were punishment for outbursts of emotion and fights with my parents that
I considered justified behaviors. I wonder what the experience will be like as an
adult, as someone who has grown critical of psychiatry, of labeling people crazy,
disordered, impaired.
“I have my meeting for the week after I come to see you,” I text Rachel.
“I’m glad,” she responds shortly.
***
Remember, Asperger’s Syndrome is a “neurodevelopmental condition within
the autistic spectrum characterized by impaired communication, difficulties in
social interaction, repetitive behaviors, and narrow interests.” Other characteristics include impaired perspective-taking and obsessive over-thinking; the frequent need for explicit instructions for social interaction, inappropriate facial
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expressions, lack of eye contact, difficulty changing subjects, and inappropriate
interrupting; and the tendency to take on an instructional, sometimes patronizing or overly formal and pedantic tone. I know these traits, I carry them
with(in) me, they are me.
***
It is  a.m. and I stare out across a dark Manhattan skyline. Cigarette smoke has
settled on every surface of Rachel’s Upper East Side apartment. I do not know
which direction I am looking, but I know it is not the view I want. After a night
of drinking I have only slept three hours, but somehow she is the one who
claims to have insomnia. I blame her for my sleeplessness. But it is not her fault
so much as it is her rule: no touching her while she sleeps.
I respect clear rules.
I am cold. I could warm myself up by putting on my sweats, but staying cold
seems like a good self-righteous punishment for a crime I cannot quite conceptualize at the moment.
Only half an hour ago I stirred out of sleep and noticed my arm was under
her pillow; she had rolled a quarter turn in my direction and begun snoring. My
arm does not belong there. Seeing as this is the first time we’ve slept in the same
bed, I am new to her physical sleeping habits. In that moment I am worried
about waking her, worried my arm has offset some balance. I slowly depress my
elbow into the mattress, creating a void between her pillow and the mattress.
I slip my arm away. Her snoring stops; I have done good. I like when I have
done good.
I wonder, will I ever be good enough for her to finally come around? Will I
ever make enough money? Love enough? Know music well enough?
I choose to sit here and write. I choose not to wake Rachel with touch. Perhaps a good start to being enough. One day I hope to prove her wrong, to show
her she can be touched while sleeping. If I succeed, she will never admit it. She is
just too stubborn, but she will appreciate it.
I should go back to bed, but the bed has become a site of self-torture. My
mind will torment me as an internal battle wages over whether to hold her or
leave her. I am sure it is too soon to prove her wrong.
Getting kicked out of the bed would be more torturous.
I will ask her to read this in the morning. She will. She told me last night I
need a copyeditor, and that, for me, means I have to let her read this. I try not to
let her impending reading change how I write. I want her to read my honest
voice, to edit my shitty draft, but still hear how I feel and read how I think.
I want to be understood.
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I sit here staring at a white screen and a black-and-yellow Manhattan skyline.
My feet feel frozen to the wooden floor, but my body is unwilling to surrender
to sleep. I could surrender to her, but I still live hoping Rachel is only yet to admit that I am what she wants. It may be cold here, outside her bedroom, but I
am patient.
After about an hour of agonizing in fear of waking Rachel, I slipped out of
bed to shower, a relatively uneventful event. I cleaned some hair away from the
drain for her, or for myself, since I hate shower water pooling at my feet.
Now I think about waking Rachel the same way we went to sleep, but I am
not sure I have permission. Last night, without words and with her back to me
she slipped the covers down and pulled her hair away from her neck. I asked,
“You want me to scratch your back?”
“Ye a. . .” she mumbled, nearly inaudible.
But now that it is morning, I do not dare encroach. I learned this pattern: as
the day goes on Rachel shifts from sterile friendship to more open and uninhibited. I like her at all hours.
I like how her cigarette breaks make for perfect bathroom breaks. I like that
she is stubborn and knows it. I like that she gets my need for directions and clarification. I like that she claims to like my writing. I like when she fails to hide
when she finds me funny. I like that she will pour a glass of wine across the floor
of a bar to prove a point, and then feel bad about it after, point proven nonetheless. I like that when we walk down the streets of Manhattan she grabs my
elbow, causing our shoulders to perpetually bounce into each other as we slip
down sidewalks made narrow by the day’s trash, left curbside for the next day’s
pick up.
***
I am concerned about my ability to reflect with empathy. Asperger’s Syndrome
is often defined by reduced empathic ability. I lack a conventional in-tunedness
with my emotions. I face struggles expressing emotion conventionally, often
experiencing difficulties with managing anger or disguising my facial-affect at
inopportune times. Therefore, I wonder how I might, as Carolyn Ellis asks, enact sociological introspection as a technique for understanding the complexity
of the lived experience of emotions essential to conducting autoethnography.
How does someone empathetically impaired, or out of tune with emotions,
conduct autoethnography? Empathy and emotion are not insignificant to someone with AS; rather, those with AS may lack a typical ability to conceptualize and
operationalize the characteristics. Can attempting to engage in autoethnography
then be considered a coping strategy? Is thinking of one’s lived experience as the
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“data” of research, as a narrative to reflect upon, a means of embracing an empathy-reminder? Despite Ashwin Kumar’s argument that those living with AS may
have difficulty understanding the beliefs, knowledge, intentions, and perceptions
of others, is the narration of life a way to encourage reflexivity?
Bochner offers what he calls a standard of ethical self-consciousness:
to show concern for how other people who are part of the teller’s story
are portrayed, for the kind of person one becomes in telling one’s story, and
to provide a space for the listener’s becoming, and for the moral
commitments and convictions that underlie the story.
Is a perpetual awareness of an impaired theory of mind enough to engage or
meet Bochner’s standard? If autoethnography is reliant on theory of mind, of
recognition of the other, where is the space for people who struggle with thinking as the Other, let alone embodying the Other, to participate? I read my own
story. I reflect on the way I narrate my interactions with others; but given my
alternative perception can I ever meet Bochner’s standard? In some ways I am
afforded an opportunity when so many of my conversations rely on text messaging, text messages that I, for any number of reasons, choose to retain.
***
During my last day in New York, Rachel has gone to work. We are in the middle of a heated texting conversation. While drunk on Friday night, apparently I
said the wrong things to her friends about me liking her.
“I’m not pissed off. I just am disappointed.”
I had cautioned Rachel that I am not great with social interactions, but she
has never had to experience the consequences until now. I do not always know
what I am allowed to say, what is private (unless specified), or when to give a
pre-planned collegial remark. It’s not my fault that I was left alone with strangers.
“Then you say: we r friends!” The texts stream in at a rate uncommon for
Rachel. I roll over in bed and pull the covers up over my shoulders. I should have
used her smoke break to go to the bathroom.
When introduced to her friends I revealed too much, made it sound like our
relationship had serious potential. In retrospect I know why I did that—wishful
thinking, really. It is not that I do not know where things stand. I know too
well. It is that I read what I want into interactions. I force idealism and romanticism into places I know it does not belong because I want it to be there. It is a
habit I cannot seem to break, and only notice once it is too late.
I try to think of how she feels or what she needs. I begin texting apologies
profusely and take full responsibility. “I told you it was only a matter of time
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till I pisse dyou off. . . . I’m sorry, Rachel. I’ll do my best not to fuck [up] again.
I wish I could do better, I really do.” It is a good thing I have yet to eat anything,
or it would be finding its way back up from my stomach. I should just go take a
warm shower and get out to Brooklyn for the day. I have plans to meet up with
a friend for lunch, and I was already nervous enough about navigating the subway, having only done it on my own twice. Now I have to worry about upsetting Rachel and how she will be when we have dinner tonight.
***
How does the telling of my own perspective, my own struggles, provide meaningful insight when my access to the Other is conventionally impaired? Bochner
notes:
I almost always make a judgment about the author’s emotional credibility,
vulnerability, and honesty. I expect the author to dig at his or her actions and
underneath them, displaying the self on the page, taking a measure of
life’s limitations, of the cultural scripts that resist transformation, of
contradictory feelings, ambivalence, and layers of subjectivity, squeezing
comedy out of life’s tragedies.
I can dig, as Bochner asks, but in what ways do my stories account for an “emotional credibility, vulnerability, and honesty?” Is my own perception of my
narration as honest and credible enough to be honest and credible for others?
Autoethnography requires meta-communication, meta-communication that
relies on recognition of communicative patterns. That I can do! An indicating
factor of AS is repetitiveness in actions and communication, similar to behaviors often associated with Obsessive Compulsive Disorder. Maxine Aston notes:
“Having AS does not mean someone cannot communicate, to socially interact,
or empathise, it just means it will be more difficult.” In this way autoethnography becomes essential as a coping strategy; it brings meta-communication to a
space where it is needed. Is the value in this work the insight it provides for the
neurotypical reader? Is its value in the sharing of the constant tensions and anxieties of someone living with Asperger’s Syndrome?
***
I sit in the car clutching the steering wheel with my hands. Contrary to usual,
Terry Gross and National Public Radio’s Fresh Air fails to keep me calm. I am
running behind schedule to get to my first appointment with the MHP. I hate
being late. With five minutes until my appointment, I call the office and confirm that I am on my way. While on the phone, one block away, I turn right
instead of left. I squeeze the steering wheel harder.
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I hate being lost, I hate being late, and now I am lost and late to an appointment confirming that I am fucked up.
I call the office again to tell them I am not cancelling, just a little turned
around.
I make it to the office and institutionalize my tardiness, signing in at
: p.m., twelve minutes late. I wonder whether the other people in the
waiting room can sense my discomfort. Do they judge me for being late? I
judge myself for being late. Can they see the frantic anger and self-loathing
on my face? I am handed some first-timer paperwork and I go sit down
amongst the others. Running late might be for the best. Otherwise I am sure
I would begin inappropriately people-watching, looking for any signs that
might give away their reasons for being here too.
There is something about healthcare waiting rooms that bothers me. I remember when I was little and used to go to a pediatrician where the waiting
room was divided into “sick” and “healthy” zones. It is a more complicated
space than the waiting room at an auto-body shop. You never look over at another person wondering, I bet he just needs a refill of his wiper fluids. That woman’s transmission must be totally shot. I wonder how long he’s been dealing with
that broken rear axle.
My name is called. I am brought to a new counter where the woman behind
the glass confirms my health insurance information, takes my picture, and
explains the appointment cancellation policy. It all seems so bureaucratic and
distant. There is another woman back here, too. She is having a conversation
reassuring the little dog hanging out of her purse they are not at the veterinarian’s office. I find it funny that she is the one to reassure what I assume is an
emotional support animal. I assume we are here to feel more human; instead
I feel like a stray pet dropped off at the pound. I wonder if I am here because
I am convinced Rachel does not find me worthy.
I am sent back to the waiting room. I pull out my laptop to do some reading
for class and try to keep to myself. I think about the book in my bag, David
Finch’s The Journal of Best Practices. It is the book that inspired me to write
that class paper I shared with Rachel about a month ago. I have not texted
her today. We have not spoken much since I got back from visiting her in
New York. It has been a week.
I think about why I am sitting in this waiting room: who am I sitting
here for?
Me, or her?
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I wonder if Rachel knows how hard it is to live in my head, constantly rummaging through thoughts about screwing up, about what other people might be
thinking about me, about how I can somehow be proactively helpful and kind
to balance out whatever rudeness will inevitably follow. I want her to know
what my being different is like.
Will she ever care that I am here?
I get an idea as I glance down at my laptop: I should send Rachel a copy of
Finch’s book. Maybe she will read it; maybe she will understand me better.
I continue to let myself run through hopeful maybes: maybe then she will
like me. I get caught up in all the hope, letting all the maybes fill the void
I know better than to hope Rachel ever will. I still go to amazon.com and
order the book. She does not like surprises, but I remind myself not to tell
her I sent her a gift.
The door in the far corner of the room opens and a sprightly man in glasses
and a sport coat announces my name. His face is familiar only because his picture was on the website I used when researching MHPs. I put away my laptop
and head towards him. We swap names as I walk through the doorway into a
new hallway and exchange conversational pleasantries as I follow him to his
office.
We stop just outside his office door. I step in first. I scan the square room.
There is a desk pushed up against one wall opposite a sofa and two chairs
situated along the wall near the door. I set down my bag on one chair and
occupy the other, avoiding the sofa that reminds me of Freudian psychotherapy. I judge the MHP for the fake plant lodged in the corner between
the sofa and the wall.
While I sat in the waiting room, the MHP quickly reviewed my first-time
patient forms and gained a glimpse of my identity. He asks why I sought out
today’s session. I share with him my curiosity regarding Asperger’s. I show him
the copy of Finch’s book I brought with me. I feel the need to clarify: “I am not
married, it is a story of self-improvement and reflexivity.”
“How long have you thought you had Asperger’s?” the MHP asks. I share
with him my elevator-speech version of the suspicion, roughly the same elevator
speech I offered Rachel a month prior. I explain my sister’s line of work, my
father’s speculation, and the essay I wrote after reading Finch’s book. He gives
me an inquisitive look and asks how I feel about making eye contact with people. I know this is a dead giveaway test of my knowledge, as a stereotypical
diagnostic point for Asperger’s Syndrome is unease with eye contact.
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“I hate making eye contact, but I have learned how to create the illusion of
making eye contact with people. I teach public speaking so I need to be good at
eye contact.” He gives me another, even more inquisitive look. Have I done or
said something wrong? I wonder if he is able to tell that I have been staring mostly
at the knot of his tie, visually interrogating the hound’s-tooth pattern of his sport
coat, and frequently glancing over at the what-should-be-forsaken fake plant.
Our conversation continues for nearly  minutes as he asks about my family, work, and social life. As our conversation winds down, he asks what my
goals are with this and any possible future sessions: “You seem pretty self-aware,
and no worse off than any of us, really.” Apparently I am good at masking my
discomfort.
“I do not really have a goal. For full disclosure, I am looking to just find out
more about myself and I am writing about this experience. I am hoping it in some
way becomes part of my dissertation. My plan is to write about the dynamics of
self-disclosure regarding mental health and how it might relate to my teaching
and research. I guess I just want to understand better who I am and if I really do
have Asperger’s, and what that might mean. . .” I trail off, worrying I have said too
much, as if there is even a right amount or right thing to be said in this instance.
“Well here’s the thing,” he says, surprisingly upbeat for a phrase that normally
leads to bad news, “after one session I am not going to diagnose you with anything. And I do not think it would behoove us to put you through $ of tests
that your insurance will not pay for.” I appreciate his candor. He continues “I
don’t know if you knew this, but the newest version of the DSM got rid of Asperger’s. . . which is not to say the signs of the Syndrome are not still possessed by
all sorts of people, it is just kind of reorganized given its nature as a spectrum disorder. You seem to know enough about it and you are clearly a very cerebral and
analytical person. You’re smart enough and know enough. If you think you have
it, you probably do, but I’m not willing to say anything definitive at this point.”
I respect his honest clarification. “If you’re looking for someone to keep talking
to about all of this in your journey of self-discovery I’m all for helping.”
I remind him I will not use his name in the writing I plan to do. He is
welcoming of my intentions. I set up another appointment, a month away. We
shake hands. I continue to make eye contact with his left cheek.
As I step out of the office I check my phone. There is a text message from my
mother:
“So, what do you have?”
***
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The things we neglect to say are perhaps the most meaningful. Words unspoken
can be fears unresolved, risks not chanced, scars still healing. Or perhaps it is a
function of things we cannot say during synchronous communication. Might
the words not said be a disengagement coping strategy? Is silence an attempt to
disengage, an attempt to reorient “thoughts and emotions away from the
stressor such as through avoidance, denial or distraction”? Or is it just a discomfort with synchronous communication? What happens when we say the
wrong things?
***
I have to
care for me,
judge me,
listen to those who love me.
A diagnosis is not a conviction,
it is not to be
solved,
overcome,
or vindictive.
The self is managed,
it is frustrating,
it is inconsistent.
And it does not have to be anything else. Unless. . .
you want it to be different.
JACOB A BRAHAM is a PhD candidate in the Department of Communication Studies at the University
of South Florida. A previous version of this essay was presented at the 2016 Southern States Communication Association Annual Conference. Correspondence to: Jacob Abraham, Department of Communication Studies, University of South Florida, 4202 E. Fowler Avenue, CIS 1040, Tampa,
FL 33620, USA. Email: jgabraha@mail.usf.edu.
NOTES
. Angela S. Khor et al., “Coping, Daily Hassles and Behavior and Emotional Problems
in Adolescents with High-Functioning Autism/Asperger’s Disorder,” Journal of Autism
and Developmental Disorders , no.  (): .
. Heather J. Carmack, “Social and Tertiary Health Identities as Argument in the DSM–V
Asperger’s/Autism Debate,” Western Journal of Communication , no.  (): .
. Jessica L. H. Spillers, Leonard M. Sensui, and Kristen F. Linton, “Concerns about
Identity and Services among People with Autism and Asperger’s Regarding DSM–
Changes,” Journal of Social Work in Disability & Rehabilitation , no.  (): .
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. Kristen F. Linton, “Clinical Diagnoses Exacerbate Stigma and Improve SelfDiscovery According to People with Autism,” Social Work in Mental Health , no. 
(): .
. Michael A. Peters, “Anxieties of Knowing: Academic Pathologies, Critical
Philosophy and the Culture of the Academic Self,” Linguistic and Philosophical
Investigations  (): .
. Ibid.
. Carol Rambo Ronai, “Multiple Reflections of Child Sex Abuse: An Argument for a
Layered Account,” Journal of Contemporary Ethnography , no.  (): .
. Ibid., .
. Carolyn, Ellis, Tony E. Adams, and Arthur P. Bochner, “Autoethnography: An
Overview,” Historical Social Research / Historische Sozialforschung , no.  (): .
. Arthur P. Bochner, “It’s about Time: Narrative and the Divided Self,” Qualitative
Inquiry , no.  (): .
. Paul Hughes, “An Autoethnographic Approach to Understanding Asperger’s
Syndrome: A Personal Exploration of Self-identity through Reflexive Narratives,”
British Journal of Learning Disabilities , no.  (): .
. Sophie Tamas, “Writing and Righting Trauma: Troubling the Autoethnographic
Voice,” Forum: Qualitative Social Research , no.  (): .
. Joyce Davidson and Victoria L. Henderson, “‘Coming Out’ on the Spectrum:
Autism, Identity and Disclosure,” Social & Cultural Geography , no.  (): .
. Carmack, “Social and Tertiary Health Identities as Argument in the DSM–V
Asperger’s/Autism Debate,” .
. Len Barton, “Emancipatory Research and Disabled People: Some Observations and
Questions,” Educational Review , no.  (): .
. Carmack, “Social and Tertiary Health Identities as Argument in the DSM–V
Asperger’s/Autism Debate,” .
. Alisa G. Woods, Esmaeil Mahdavi, and Jeanne P. Ryan, “Treating Clients with
Asperger’s Syndrome and Autism,” Child Adolescent Psychiatry and Mental Health ,
no.  (): .
. Khor et al., “Coping, Daily Hassles and Behavior and Emotional Problems in
Adolescents with High-Functioning Autism/Asperger’s Disorder,” .
. Linton, “Clinical Diagnoses Exacerbate Stigma and Improve Self-Discovery
According to People with Autism,” .
. Ibid., .
. Spillers, Sensui, and Linton, “Concerns about Identity and Services among People
with Autism and Asperger’s Regarding DSM– Changes,” .
. Ibid.
. Carmack, “Social and Tertiary Health Identities as Argument in the DSM–V
Asperger’s/Autism Debate,” .
. Sarah M. Parsloe and Austin S. Babrow, “Removal of Asperger’s Syndrome from
the DSM V: Community Response to Uncertainty,” Health Communication , no. 
(): .
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. Sarah M. Parsloe, “Discourses of Disability, Narratives of Community: Reclaiming an
Autistic Identity Online,” Journal of Applied Communication Research , no.  (): .
. Ibid., –.
. Woods, Mahdavi, and Ryan, “Treating Clients with Asperger’s Syndrome and
Autism,” .
. Roy Richard Grinker and Kyungjin Cho, “Border Children: Interpreting Autism
Spectrum Disorder in South Korea,” Ethos , no.  (): .
. Parsloe, “Discourses of Disability, Narratives of Community,” .
. Ilaria Minio-Paluello et al., “Absence of Embodied Empathy during Pain
Observation in Asperger Syndrome,” Biological Psychiatry , no.  (): .
. Ibid.
. Ashwin Kumar, “Key Factors Associated with Asperger’s Syndrome and Implications
for Effective Teaching to Enhance Student Participation and Engagement,” International
Journal of Human Sciences , no.  (): –.
. Woods, Mahdavi, and Ryan, “Treating Clients with Asperger’s Syndrome and
Autism,” .
. Minio-Paluello et al., “Absence of Embodied Empathy during Pain Observation in
Asperger Syndrome,” .
. Carolyn Ellis, “Sociological Introspection and Emotional Experience,” Symbolic
Interaction , no.  (): .
. Minio-Paluello et al., “Absence of Embodied Empathy during Pain Observation in
Asperger Syndrome,” .
. Woods, Mahdavi, and Ryan, “Treating Clients with Asperger’s Syndrome and
Autism,” .
. Kumar, “Key Factors Associated with Asperger’s Syndrome and Implications for
Effective Teaching to Enhance Student Participation and Engagement,” .
. Arthur P. Bochner, “Criteria against Ourselves,” Qualitative Inquiry , no. 
(): .
. Ibid., .
. Ibid.
. Maxine Aston, “Asperger Syndrome in the Bedroom,” Sexual and Relationship
Therapy , no.  (): .
. David Finch, The Journal of Best Practices: A Memoir of Marriage, Asperger
Syndrome, and One Man’s Quest to Be a Better Husband (New York: Scribner, ).
. Khor et al., “Coping, Daily Hassles and Behavior and Emotional Problems in
Adolescents with High-Functioning Autism/Asperger’s Disorder,” .
. Penny Benford and P. J. Standen, “The Internet: A Comfortable Communication
Medium for People with Asperger Syndrome (AS) and High Functioning Autism
(HFA)?” Journal of Assistive Technologies , no.  (): .
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