 I'd like to introduce today's speakers. First is Kristin Okamoto. Kristin is a first year PhD candidate in the School of Communication Studies. She earned her MA from UNC Charlotte just this past May. Her research interests are located at the intersection of health, sport, and rhetorical studies. And specifically, she is interested in the ways in which sport may foster community in order to promote social change. And our other speaker today is Sarah Tarslow. Sarah is also a first year PhD candidate in the School of Communications. She earned her MA in communication studies from San Diego State. Her research interests are on health, identity, and disability with a specific focus on contested diagnoses. And her research projects have investigated how professional and family caregivers, the media, and diagnosed individuals make sense of autism and how the discourses surrounding autism spectrum disorders impact individuals who directly experience them. So welcome both Sarah and Kristin. Thank you so much for that introduction, Kelly. And we are thrilled to be here today. Again, my name's Kristin Okamoto. And I just earned my master's degree this past May from the University of North Carolina at Charlotte. And my research focuses on the way in which sport can foster social change. So a lot of the research that we'll be talking to you about today comes from our thesis work that we both did in our respective programs. The title of my thesis was Running Alone Together and Look at the Embodied Experiences of Running Works Athletes. That's a little bit about myself. Now let's take an interview yourself. All right. Good morning. Good afternoon. I'd like to, again, reiterate the thanks to the committee who selected us. My name, again, is Sarah Karstlow. I got my master's degree from San Diego State. And my research has centered all around Asperger's syndrome and autism up to this point and how their identities have been negotiated, both from themselves and also in the media. And also the people who surround them, their support networks as well. And so my thesis was entitled From Aspergers to Aspies, Reclaiming, Reframing, Renegotiating, A Stigmatized Identity. A long title, so I even forget it myself. But even Kristen and I have touched on a lot of research regarding stigmatized populations. All of our research is centered around that. And so we thought that presenting together would be a great way of talking about the issues that ethnographic researchers like us have with dealing with people who face stigma. And so we have lots of challenges we had in our research. And for our presentation today, we wanna discuss some of those challenges and how we handle them in the three areas. So getting ready to do our research, that background research process. In the field, what happened when we actually went out and talked with and interacted with these people. And then finally, in the reflection process and actually writing out this research and figure out how to represent the people that we were doing our research about. And wait. So the title of our presentation today is Tales from the Field. So I'd like to start out by introducing our fields and what that meant to both of our research. And in both of our cases, our fields were quite different. I participated with a running group called Running Works. It's based out of my hometown in Charlotte, North Carolina. And it's a running group that organized to aid the homeless population within that community. So they organized around this idea that sport can foster change, specifically within the community of persons without homes. So these men and women, they meet twice a week to go on runs. And after each run, they'll meet kind of into a debriefing session about different challenges that they're facing in their own lives and certain topics such as resume assistance perhaps or job opportunities that are within the community. Those are the types of issues that would be discussed during this type of debriefing session. And then beyond that, there's the different goals of working towards the completion of different races, 5K races. I'll talk about later. We actually had a participant that completed an ultramarathon not too long ago, which is an accomplishment for anybody. So that's kind of the basic premise of the group. I was actually in the field. I went on group runs with these individuals. And so I was kind of on the ground, so to speak. Sarah had a different type of field and she'll explain that to you and how it differed a little bit from my experiences. So Kristen was very much on the ground, literally running with the participants. My participants were online. So I had an online community. It was called ASPIS Central. It still is, still existing. And it's a community for people who have Asperger's syndrome. So they call themselves ASPIS. This is the culture they've created and this name for themselves. So they're people who have Asperger's syndrome and also autism, high functioning autism. So I want to take an opportunity to describe what autism is. According to the research literature, there are three things that qualify you to be given up, the diagnosis of autism. So the first is that you may have communication issues. So a lot of times people will have a delayed speech development. It may take them a while to start speaking. Many of them do. Many of the low functioning autism people never actually end up speaking. But many of my participants were actually very verbose. And so the second thing that you could have was behavioral issues. And so you'll hear me talking about stimming. This is self-stimulation. People with autism tend to have difficulties handling a lot of the sensory details that we have in our daily lives. So things like loud sounds and smells and touch. So they'll do things like stimming. So if you've heard about autism, the typical one is hand-lapping or rubbing, things like that to help them calm down. So they have these behavioral things that go on as well. And the third thing, the third description, is social issues. And these are the things that are really interesting to me. So difficulty in understanding every day things that we take for granted. What does it mean when I ask you, how are you doing? Are you actually supposed to tell me exactly how you're doing? That's a social norm that we are used to. But people with Asperger's syndrome and autism, these kinds of social norms, these everyday occurrences aren't intuitive. They have to learn them over and over again. They also find it difficult to understand facial expressions, understand a lot of the nonverbal things that we just internalize naturally. So that's the big clinical definition, a really quick rundown of it. But my participants came to this community because they suffered from these things in their daily lives. And they also came to this community because they were proud of their identity as somebody with Asperger's syndrome. So in this community, they would talk about, do I have it? Some people were self-diagnosing on it. Some people were looking for some examples of how to cope with it in their daily lives, some advice they have for people. And then a lot of them just came together as people that they could hang out with. They could identify with. This was a culture and a community. So it was really interesting, although not quite on the ground like Kristen was. It was a great way to see people across the world dealing with and loving, sometimes being on the spectrum. So for both Sarah and I, we chose to do ethnographically inspired research. So I'd like to talk a little bit about what exactly that means and why we chose this particular methodology to explore and learn about these particular issues persons living without homes and also persons living with Asperger's syndrome. So I have a couple of definitions of ethnography that we wanted to share with you today. So the first quote up here highlights the fact that ethnography is highly particular and hauntingly personal. And for each of us, we became quite close to many of our participants. So ethnography allowed us to look into their lives that we wouldn't have been able to obtain otherwise perhaps through other means of investigation, such as through only interviews because you only are able to interact with that person maybe at one particular point in time or perhaps through surveys where you are able to get another type of data. But for each of us, we decided to employ ethnographic methods so that we could get this personal look inside of their lives and understand what exactly it meant to live without a home or to be a person who is living with Asperger's syndrome. That's kind of why we chose ethnography, how we came to it. Ethnography also privileges the use of narrative and with this and what a lot of what we'll be sharing with you today is based on our field notes. So it's our certain reflections that we wrote to ourselves throughout our time in the field will actually share some of those with you about our experiences of what it was like as we went through our research process. So that's kind of a hallmark of ethnographic research is this type of reflexivity in the form of field notes in the form of memos to ourselves, just different kind of aha eureka moments that we had throughout our experience. And that's what ethnography enabled us to accomplish and that's why we chose that particular methodology. Ethnography, like I said, it allowed us to kind of peek into the window, get a glimpse into what it might be like to live without a home or with Asperger's syndrome. And there was a particular salient moment for me in my research. When one participant spoke about lack of privacy living in a homeless shelter that really resonated with me. And I noted this in my field notes and I would like to share that with you. I said, he, Michael, described how he sometimes goes into the restroom stalls in the shelter in order to obtain privacy. He described how you can never go anywhere and just be alone in the shelters and emphasize the fact that there is always someone there. There's never any time to collect your thoughts. At times, he lamented, he just sits there and watches feet go by and listens to see if anyone even realizes that he's gone. This statement made the house members in the room visibly uncomfortable. Gases shifted downward and bodies shifted in their seats as those with homes began to process this information. For several moments, there was silence. Justin, a volunteer with the organization who did happen to have a home, took ownership of this pause by acknowledging that lack of privacy is something that people who are not homeless do not often think about. I began to think about my normal day and my everyday lives. I thought about the fact that when I left running works that day, I would be able to go home and take a shower and choose to be alone if I wanted to be. Perhaps running, I note, is a way for persons without homes to find this needed peace, this type of inner peace. So this type of reflection that was afforded to us by ethnography allowed me to get at these nuanced understandings of what it means to work without a home in the form of just not having privacy, not having a space to go to, to call your own, to be alone. I think often we take that for granted as just okay, I need to shut the world out for a couple of minutes and collect my thoughts, be by myself, but that's not a privilege that a person without a home has because they collectively share their space with many other people. Ethnography, for me, was a really important way to access a population that is often really misunderstood and often times the description of autism is so nebulous. It's hard to understand what it would be like to live with a diagnosis and with that perspective. And so I wanted to find a way to make that come clear in my thesis. So what I did was I took interview data from all my participants. What is it like, your day to day living? Give me some stories. And I put them together in one big story. It's a hybrid story, capturing all the voices of my participants together. And it really helped me to give an idea of what would be like and that helped me to process things. So I have a story, it's called a search for soup and understanding. And it's from the first person perspective as if you have Asperger's syndrome. Shaps of sickly fluorescent light stab at my aiming eyeballs. Even filtered through my sunglasses and muffled by iPod headphones, the grocery store seems too bright, too noisy, too crowded. My heart beats a familiar trapped and bird cage rhythm against my ribs. I feel a strong urge to run to my car and escape this throng of neurotypicals, us. And their incessant chatter, their overlap laughter. No, I eat soup, I will not leave here without it. My right thumb makes soothing circles on my left palm, hidden from judging eyes in the darkness that my hoodies front a pocket. I tried to stop stimming behaviors for a while, tired of concerned looks given by disapproving strangers. The results were disastrous, migraines, nausea, meltdowns. I began lying on overly potent mixtures of vodka and cranberry to have a more soothing form of socially accepted behavior. After a few bad experiences, I thought, what's so bad about a little hand rubbing? I make a turn down the first aisle and walk straight into a smell ambush overripe peaches, red onions, fresh basil. I flash back to the mornings when my dad used to come in from delivering newspapers, smelling like the cold, fresh air. He couldn't understand why I would throw tantrums when he walked by, the scent rolling off his clothes and lodging painfully in the back of my throat. I tamped down on my current valve of nausea and doggedly continued my quest to pursue. Gloria, it's so good to see you, how's Johnny? The woman's voice starls me and I flinch as she pushes past me to join Gloria at the shelf next to the baby food. Always finally sleeping through the night, Gloria yells. This is a neurotypical phenomenon I will never understand. This obsession with talking about other people, the talking can go on for so long and so often I find the subject matter boring. Who cares what Starlet is currently sleeping with somebody else's husband or who won some tedious sports match or cheated at a bike riding by drugging themselves? I mean, why bother inlessly discussing these things? I remember my grandmother telling me that I was selfish and that I didn't care about anyone else. That hurt just because my facial expressions don't shift like they should or I can't quite figure out what the appropriate length of eye contact should be or I lose interest in this illogical chatter doesn't mean that I don't care. Once my mother hugged me, we found out that my grandfather died. She touched me so lightly that it tickled and I laughed. My parents asked me if I had any feelings at all. Of course I do. In fact, I often care so intensely that I find it hard to function. But seriously, how long can I talk about a baby's regular sleeping pattern? And yet, should I begin to describe and discuss my interests? They glaze look in their eyes and wander off. My therapist tells me that to work on branching out my obsessions, but I find them much more beautiful. I experience intense joy every day at the smallest of discoveries. The tracery of veins and leaf, for instance, or clouds in the sky. I turn away from these obnoxious women and pluck a peach from the display table, focusing on each tiny hair. Jamie, the voice calls from behind me, I turn with a vague sense of dread, hoping it's someone I can easily identify. I have what my therapist calls face blindness. When I was a child, I thought everybody saw the world as I did. People's faces typically represent a hen's egg, with two holes for eyes and a hole that opens and closes intermittently for a mouth when they talk or they eat. I have to memorize a person's other features, such as their hair color or the sound of their voice to figure out who they are. As a child, I used to get quite annoyed. I was convinced everybody else had some sort of secret signal system that I didn't know. Today I'm in luck. This face is framed by tight, ginger-colored spirals falling in unruly waves across a freckled forehead. Erin, my neighbor. How are you, she gushes. I pause, trying to figure out whether she means how are you, tell me about your life, or she wants me to say, fine, how are you? The response that I've learned is customary. It seems to me that every neurotypical I meet uses some sort of filter system so that they can, that what they say, only very vaguely articulates what they actually mean. They pick out on emotional and facial cues from others with ease and react to unwritten rules that I don't know. Over the years, I've expected, however, that I should smile. So I push the edges of my lips upward into the semblance of a smile and chance of cautious I'm doing a right. Now, thoroughly exhausted, I hustle to the soup aisle, snag several cans and swipe them through the self-jacket and prepare you to my car. A silver jaguar pulls up and a woman jumps out. What are you doing here? You can't be here, she yells, gesticulating wildly. I stand still in other confusion as the woman repeats, what are you doing here? I've wanted some soup, I hear myself reply. You can't park here, you must move your car immediately. I feel trapped in a waking nightmare. Who is this person? What the hell is she talking about? Why is she bugging me? I wheel on my heels, do the ass be hunched in shoulder's thing and begin to unload my cart. You are in a handicapped parking spot. You must move your vehicle now, woman says. Touching me on the shoulder, my mask melts. Take your hand off me, don't you ever touch me. This is my car and my handicapped apartments. I can park where I want to. I'm sorry, ma'am, the woman sputters, taking a step backwards. Your face looks so radiant. I couldn't tell, you have a disability. You look fine. I do, don't I, I mutter to myself, turning back to my bags. And that is the problem. I am normal and not normal. I'm capable of following the rules, but I chafe against the constraints. Neuro-typicals seem to imagine that everyone with autism is somehow a tragedy, leaving care all their lives. Not realizing that many of us fly under the radar and quietly get on with it. We have marriages, families, jobs and mortgages, just the same as anybody else. And just the same as anybody else. Along for a place where I am understood, accepted and made to feel ahead. So, a long story. But a way that ethnography can help us to capture the daily experiences of somebody who has a perspective that we don't. And so that was my goal with this story. So part of getting started, and one of the first things as a researcher that you typically do is to look at prior research and see what's been done in the past. For Sarah and I, the literature review was much more than just looking in books to see what theories were out there, what other folks had already accomplished in the research. It was building a deeper appreciation for our particular populations with whom we interacted. For myself, I was a member of the running community prior to coming to the research, which is kind of what drew me to this particular study with involving runners. But for myself, I needed to use the literature review as a way to probe deeper into what it meant to live without a home. So that's kind of the purpose of the literature review for me in my research was to understand homelessness and all of its nuanced capacities. There's lots of different definitions regarding homelessness. And I took the opportunity, I looked at the literature review as a way to gain a deeper appreciation for the homeless situation versus just kind of as an obligation. Right, if any of us have written research papers in the past, we kind of look at the literature review sometimes as just something that you have to get through. But Sarah and I approached it as a way to build upon what had already been done and a way to gain an appreciation of the certain populations that were under study. So, and I also wanted to explore the different intersections between sport and marginalization. So I focused on that in my literature review as well, what ways that sport can help to foster this type of social change as well. And I'd like to share a story into kind of embracing what it means to again live without a home. And this comes from one of my participants who shared with me what it's like to go to sleep and then wake up in a shelter. He says, usually check-in time is no later than eight o'clock in the evening. If you don't check-in by eight o'clock, then you're pretty much as so well for the night. But I usually check in a little earlier before that because they serve dinner at the shelters as well. They serve dinner from six o'clock to seven o'clock in the evening. I'm usually there sometime between six and seven. Lights out is usually sometime around 10 or 10 30. They'll have cigarette breaks in between. I usually wake up sometime between five and six o'clock in the morning. That's when they turn the lights on, start yelling and screaming. I guess that's what they have to do. They start banging pots and pans. Wake up, time to get up. And this particular interview struck me. I can't imagine being woken up to the cocky of banging pots and pans in the morning. And it's this information that I couldn't find but I needed that appreciation of what's been done to kind of acknowledge what still needed to be done. What work still needed to be done. And for me, it was privileging the stories of these individuals in ways that had not been accomplished before by just examining kind of different psychological aspects of homelessness or different economic aspects. I wanted to understand the lived experiences. And that's what the literature helped me to identify. Also the fact that homelessness is something that is constructed through our communication. That is the way that we talk about communication shapes the way that we come to understand it. There's communication sellers for Sarah and I. That's important. Also, through the literature review, I learned about other organizations that also strive to privilege the communication aspects of the persons without homes community. In particular, there are street newspapers in which homeless men and women sell newspapers in order to earn a living. And there's been a lot of studies within our field regarding street newspapers. There's also a similar group that you might have been familiar with. It started in Philadelphia called Back on My Feet. And we've actually had another PhD student here at Ohio University who studied the Back on My Feet organization. And the Runny Works organization, with whom I interacted, was actually modeled off of this particular organization that's based out of the Philadelphia in which runners are gathered from this homeless community in order to foster change and instill kind of hope and discipline and a sense of community. Throughout my research, so interestingly enough, I found that Runny Works served to offer those without homes and alternatives type of culture, right? So I asked, is homelessness a culture? It certainly is, especially through interactions with the shelter, things like that. But I often found that most members spoke of their identities as runners rather than as someone who was homeless. So the Runny Works organization offered members this alternative identity as a runner versus someone who was without a home. So this served to empower the men and women who interacted and offered them agency over their own lives by offering them this alternative identity as opposed to the one that has been so often stigmatized. And for me, my research was a source of inspiration. So I came to this research through two articles that really hit home for me. And the first was a New York Times article by Amy Harmon. And it was called Autistic and Seeking a Place in the World. And it was about, Amy Harmon actually followed the journey of this man who was 21, just graduating from high school, trying to find a job. And she followed him over an entire year and traced out the impact of autism on his life. And so that article really spoke to me. And I wanted to learn more about this community. And a second article was by Bagatell. And the article was called Orchestrating Voices, Autism, Identity, and the Power of Discourse. And it opened my eyes to the idea that people with Asperger's Syndrome can often find a community like the one I study online that helps them to embrace there. And they really like the infrastructure of this culture they have. It's not no longer a diagnosis, but something they can latch on to. But then when they felt that they tried to function in a neurotypical world, our world of normal people, they find it difficult to do that. And so there's this constant back and forth between trying to embrace one identity and function a world that doesn't understand it. So that's the kind of thing that my literature review revealed to me. And I found that autism really can be considered a culture. So they have a part of their culture as naming what it is they are. So they call themselves Aspies. And they'll call us neurotypicals. The idea that there is no normal and abnormal. There's a spectrum of difference. And so that's the idea of neurodiversity, that we need to value how people think that people with Asperger's Syndrome are simply thinking a different way that also adds value to society is not just a broken thing that we have to fix, that we have to cure. And I also found that the culture has heroes. They have people like you may have heard of Temple Grand and she's one of the biggest folks people for people on this spectrum, the autism spectrum. My participants loved John Elder Robinson who wrote a lot of books from the perspective of someone with an Asperger's Syndrome. So these were heroes they could hold up as folks people for them. But they also had some heroes that they would claim, people in history. They would say, oh, Darwin must have asked autism because he was so obsessed with what he researched. So they would claim people like Bill Gates, they believe that he has autism or Asperger's Syndrome. And so they'll claim these people in history that did awesome things and they kind of embrace them into their culture. And oftentimes they'll embrace characters in popular culture as well that may be maybe part of their culture, such as Sheldon Cooper from the Big Bang Theory if you're familiar with him. Or Bones from, you know, Tumpin's Brennan from Bones. And so they may embrace these characters even though they haven't been said, no one has said that they have Asperger's Syndrome, they may embrace them. But some people say these are characters who have accomplishments who do things that we can never reach. So there is this, this is a culture as much as it is a diagnosis. So as we're moving on to our research we had to figure out how to gain access to these communities which was not always as easy as maybe some other communities. We realized that as researchers it's just as much about the participants being willing to embrace us as it is about our willingness to research them. So we had to think about issues, ethical issues and also practical issues of reaching out to our participants, gaining their consent. So I came to my project much by chance. I had mentioned earlier that I was already a member of the running community. I was pretty active within the running community in my hometown. So I actually found out about this new organization through an email list that I was already a part of. Got an email one day and explained this organization that was organizing to aid the homeless population through running. I thought to myself, interesting, I run. Why don't I show up and see what I can do to help? So this helped me. The fact that I was already a runner and had ties within that community helped me to negotiate my access into this organization. However, even with my relative kind of insider access I still faced moments of much self doubt and uncertainty as I approached my project. So this is my, I recount this in my field notes, this experience on my first day with the organization. I said I pull into the parking lot of a local homeless, local homeless outreach center where I have read that a new running group is to meet. I struggled to find the parking space. The lot is full and spaces are cramped. I managed to squeeze my car between two large conversion fans and pull into a spot beside a lunch line that was beginning to form. I am all too aware of the attention that is focused on me in that moment as I maneuver my vehicle through the parking lot. My vehicle, for me, becomes a conspicuous symbol of my difference. I get out of the car, taking my purse with me. I did not feel comfortable leaving it in the car. I am nervous because I do not know anyone. I don't have any real ties to this organization. I feel out of place. I walk up and meet Kelly, an apparent leader within the organization. Without missing a beat, she immediately hands me flyers to begin recruiting for our runs. I am immediately accepted and put to work. So even though I had knowledge of the running community, I still had to negotiate access within and among this particular organization and also its constituent members that comprise this organization as well. And for me, accessing this population, I had to take a few things into account. And so I was posting on these sites and making sure the moderators allowed me to be there. And I had to remember that this is a population who has a lot of distrust of researchers. Oftentimes, researchers are associated with tricks, the docs, the PhDs who diagnose them and misdiagnose them. They don't always have a happy relationship with research, and they don't want to feel like bugs under a microscope. So I had to find a way of framing it as wanting to tell their story as a way of getting into that community and getting people to talk to me. So that was one thing I had to take into account. And the other was the very real fact that not everybody in the community was equally comfortable with talking. Right, so there were some issues there. So I decided I would use Skype and try to use video, but some people aren't comfortable with that. So I used the chat function. Some people would talk by phone, and some people would talk by email. So I had to make sure I was accommodating for my participants to be able to reach out to them. So I have a story here about my first encounter with my first participant who happened to become my informant, and we would become, and still are, really good friends. So here's what my first intimate experience was like. Skype finally connects. I'm looking at the pixelated image of a round-faced man in his early 30s. His heavy jaws set in a neutral half-smile. By the dim light of the white-walled rooms where he sits, I can see his large eyes are vivid blue. Tuffs of light-brown hair drape across his forehead, something black and red checkered is settled around his shoulders. I wonder if it's a bathroom. The image reminds me that it's midnight in Texas, calling from, even though it's only 10 o'clock here, in San Diego. Hi Nick, I say, I find I am suddenly nervous. I have been talking easily for the last hour using Skype's chat function, working through the interview questions I had prepared. Now I'm self-conscious about my own appearance, a 23-year-old female graduate student who often looks much younger, wearing an overly eager smile. I ask a few questions in the name of small talk. He answers amicably in short one or two sentence phrases as he blinks and looks upward or turns to the side. If I feel awkward, I think. I wonder how he feels. By reading his and others' posts on the online community, Aspie Central, I've learned how difficult social interactions like this can be for people with Asperger's syndrome. The knowledge gives me an added appreciation for Nick, who has chosen to open up to a complete stranger about his life as an Aspie. Small talk, beaters out. I clicked in the Skype call and sit in front of my computer. Thank you for everything Nick has told me and what else I have to learn. So using Skype, using phone calls, using email was a way to reach out to a population who may have been really sequestered, may have not wanted to reach out to me or researcher. So that was one of the issues we had with gaming. So as we collected our literature to review and beginning our research, we also identified that in working with these marginalized populations, oftentimes the research that's been done has framed marginalized groups in terms of kind of a problem centered approach, right? What can we do to fix this problem? In Sarah's case, they didn't view them, they didn't view themselves as having a problem to begin with. So that's kind of the wrong approach starting out with. And in my case with the homeless community, it was framed in terms of a population in need of assistance and need of aid. So for both of those cultures, there are many misconceptions that may guide or even misguide the researcher's time in the field. In my own case regarding the homeless population, many times those without homes were framed as victims of their own circumstances. So the literature tended to focus on issues of substance abuse, low socioeconomic status, and so on and so forth. So this presented homelessness as a type of deficit. So the homeless body was seen as lacking, something that was lacking. And it led to notions of stigma, right? Which leads us to think about homeless persons as being unmotivated and in need of our help. So I asked in my interview schedule, one of the questions I would ask is, what do you think are some of the misconceptions that people have about homelessness? And one of my participants responded like this. They said, what I think people need to know about homelessness is that just because somebody's homeless doesn't mean they're a bad person. I mean, homeless people are going through quite a few issues, housing and trying to find work. I mean, it's probably a little more difficult for homeless people to find housing and to find work. But just because you're homeless, we're all human beings. We should all be treated equally. And this is one of, in my interview, is that it directly addressed these issues of how we identify people as problems versus people as people as being human, just like human lives. For me, a lot of the research was focused on the negative impacts of asperger syndrome and autism which are very real. So things like being able to get a job, all of the sometimes the psychological impacts that having autism can be associated with really intense depression. These are all really negative things that impact people with autism. But my participants made it clear to me that not everything is bad news, that there are some positive things about being on the spectrum. And this was something I hadn't been thinking about when I had gone into my research. So this is an excerpt from a conversation with Nick. My participant, his hero is John Elder Robinson, this guy who wrote all sorts of books from the spectrum, from the perspective of being an Aspie. And he goes to a talk by his hero and former school. He's really excited about it, so talking to him about it and I ask him what Robinson said. And he says, Robinson talked about how hard it is for people growing up on the spectrum to not be equipped to express the pain of their social affairs, which is something I could relate to. Something about how Nick writes this resonates with me. I suddenly see the image of a young boy sitting in the corner of the playground watching a game of football that goes on without it. A big thing that he was talking about was peer groups or children on the spectrum who continues. I would have liked to have had something like that growing up. The pencil icon appears again. I think we need more stories about people on the spectrum that aren't just told and doomed and boring types. His words pull me out of my current negative confusings. Robinson was talking about how Asperger's syndrome can be an advantage as well as a disability. His social isolation as a child was balanced out by the fact that it gave him the time to obsessively devote himself to learning about electronics, which later enabled him to do things like working as an engineer for KISS and Pink Floyd. Oh my goodness, I think, have I been perpetuating doom and gloom stories? I wrote a very brief short story about someone on the spectrum. I could probably pull it up if you'd like to read it, Nick writes. I'd love to, I respond, and wait as a file uploads to Skype. A click introduces me to Joel, an office worker who absorbs his co-worker's gossip with mild amusement, sometimes accepts their offers to socialize, most times not, and goes home to settle contentedly among his books. In fact, Joel doesn't sound very different from me, the graduate student. Where I wonder, does neurotypical end and ask me to eat it? So I started out by, no, there's all this terrible things that they're having to deal with, but I realized that it's not all so bad. And talking with Nick really helped reinforce that. And it's something I want to show in my thesis. So more often than not, researchers like us come to our field as outsiders. We are those researchers standing out the windows, window shopping with our faces pressed against the glass. We're not part of the group and we never will be, but I'll never know what it's like to have Asperger's syndrome. Kristen may not know, hopefully, what it's like to live without a home. But we all had turning, we both had turning moments in our research that allowed us to recognize that our participants were allowing us in to their community. That we were no longer being relegated to the windows, but we had been invited in by the door. And so those were really powerful for moments for us during our research process. So once you're in the field, and that's for ethnographic researcher must negotiate gaining access within and among the particular populations that they wished to interact with. So this comes about usually through deep involvement with participants within my research, just showing up consistently being a constant presence in the lives of these men and women helped me to gain their acceptance. Because one thing within the homeless community that they don't see a lot of, unfortunately, is consistency. They don't see a lot of the same people day to day, people come in and out of their lives, but showing up on a regular basis helped me to earn their trust and to earn their acceptance. So for the ethnographic researcher, we have an even higher moral obligation to our participants since we're dealing in the currency of human lives. So one particularly meaningful experience to me kind of a turning point in my research, when I kind of knew I was accepted as a member of this organization came when we went on a group run. This was the first time that we had left the facility where we normally meet and went on a run to a local greenway, which required us to all pile into a van to travel to this destination. So I wrote about this in my field notes. I said, typically our group runs would take place on site. I would meet at a designated location and venture out into the city for a run. Today, however, was different. On this particular spring day, the sky was blue and the humidity was low, a rarity for a southern city. The leaders of Running Works decided to venture offsite for the first time. We set out for a nearby greenway. There were 19 people crammed into a 12 passenger van. That's the picture that you see here on top of lots of laps and things like that. People were seated anywhere they could make room. A safety concern, I'm sure. I was seated on my flap and feeling more than a little self-conscious. One of the leaders, Meredith, was curled up in a ball between the front two seats, holding on tightly as we whipped through the city streets of Charlotte. There was a palpable tension in the van as we were all just becoming acquainted with one another. Suddenly, one member dares to break the silence and begins singing along loudly to an Ellie Furtado song on the radio. The whole van erupts and laughter. Community begins to form. I write in my field notes, quote, today the line between volunteer and member became less noticeable. In that moment, I saw a group of runners, not a group of homeless individuals. So in the field community can spring forth kind of from the most mundane experiences when we might least expect it. As a researcher, we must prepare ourselves for these moments of deep vulnerability and uncertainty as well. For me, I was not on the ground in the field, but I found a way to connect with my neighbor, just Ben Nick, and it actually wasn't me. There was a moment where I was sitting at my computer grading student papers and a ping popped up on Skype and it was Nick, hello, how are you? And I was freaked out. I was like, can I talk to this person? This is, I don't have an interview question ready. This is not, is this okay, is this ethical? And I decided to talk back to him. And after that moment, we talked back and forth. We had about seven and a half hours of conversation over the course of my thesis and we still talk to this day with posts on my Facebook all the time. And so there was this moment where we became more and then a researcher and a participant, we became two people who had some really interesting interests in common. He loves opera, so do I talk a lot about that. And also about cats, which are autistic spirit animals apparently. So there was this bond that was more than the researcher and the participant. And it became really important as I went forward in my research. So after you're in the field, you gain acceptance and you've collected your observations and your interviews. You've logged multiple hours in the field. You've developed relationships with these participants. Now what? You're left sitting at your computer screen looking at that ominous white page before you. What do you do? You're left sitting on that page. So we, Sarah and I were both faced with kind of moral and ethical decisions that we had to make in the writing of our research, especially since we both dealt with marginalized populations. So we had to face questions of how to most ethically represent our participants. And for both Sarah and I, this involved a choice to use person first language. I, for example, made the strategic decision in the writing up of my work to, instead of using the word homeless, I chose to use the word person about home and I agreed with it PWH throughout. So it put the person first rather than their situation or condition as a strategic decision that I made. I also utilized kind of this in vivo language that is the language that the members use to talk about themselves. In my research, the members of the community organization that I was serving referred to the members as neighbors and then they often referred to themselves as neighbors. So I also adopted that language as well and I write up in order to kind of de-emphasize the difference of these individuals. Yeah, and for me, I was using, ASPE, I was using mirror typical, I was using all the words they used to describe their own culture and their perspective. And another thing that was really important to me was member checks. The idea that I wanted to give what I'm writing back to the people I'm researching to make sure that I'm not running all over in their experiences saying things that they would not endorse, would not understand and doesn't resonate with them. And so I made sure to send back to my good friends did lots of work on it with me and some of my other participants as well. And so I got feedback like, I feel like you weren't running rough shot over our personal experiences, it was right on. I wanted to be used on a larger scale to help people understand themselves. And so that was really important to me to get that confirmation. I didn't want to be misrepresenting people. So that goes into our next section, which is the responsibility of the researcher. All the ethical issues that come up with when you are the ambassador for another culture, for another group of people. How do we have to deal with that in our write up? For me, one of the biggest ethical situations that I ran into was the fact that the population with whom I was interacting is very transient in nature. So sometimes I would see a member only once and then never speak to him or her again. So this kind of, I was faced with the decision, well how do I use this information about an interview that I literally would do on the run running with someone, information that they would give me about their lives, information that they would give me about particular struggles that they were going through. How do I represent that? I didn't get them to formally consign to consent form or anything like that. So how do I represent that? So a lot of times I had to make the decision to write this up in the form of my own reflection and my sealed notes, versus attributing that directly to them in an interview type setting. So I wouldn't post a name to it, I would just say a member in a conversation with a participant, I know that. And then list that information. So this kind of led me to question kind of what is off limits? What is the difference between the field? Where does the field end and how we begin, right? So what are the distinctions? And for me the line was very blurry, right? Because I had kind of this continuous interaction with my participants. And also another ethical implication that I ran into was the acknowledging of my own privilege within my work, the fact that I did occupy a certain position of authority of a certain race, gender, class, et cetera. So there were times when I came face to face with my privilege in my research. And as an ethnographic researcher, we need to acknowledge this positionality and become even more important when we're dealing with marginalized populations. So I recounted one of these particular moments in my field notes. I said, it was an awkward feeling when one of the members asked me what I was doing for the summer. But this time I was in graduate school and I was on summer break. I told him I don't have a job, any comments and laughs. What are you gonna do all day? Sit around and watch the prices right and eat cookies all day? That was an awkward moment. I was faced directly with my privilege, the fact that I could choose how I spent my free time. For a lot of people it wasn't a choice. In July, from a field in July, I also noted today I show up late. I was ironically running late because I was getting food ready for dinner. I had to get food into a marinade. I began thinking about the irony of that. The fact that I'm thinking about what I'm going to eat for dinner tonight before I go to running works. And then another time I noted that there was a palpable energy in the room as members hurried between rooms to change clothes to go out on our run. They were getting fit for shoes and organizing their belongings. I feeling like an outsider felt the need to step up and help out. I turned to one of the founders and inadvertently blurted out, I don't want to be a bum and just sit here, what can I do to help out? As my words just hung there for what seemed like hours, I found myself wanting to disappear and hope that no one noticed the words that I just uttered. I felt shame and embarrassment. So these are moments when I seriously had to reflect upon my own positionality and my own privilege within my research. And for me, the ethical issue is remembering that the research doesn't just impact people once it's published, that the process of doing research directly impacts the people that I'm interviewing. And I came face to face with this when I interviewed my participant, Paul, who during the course of our interview told me that he had been considering suicide a month earlier. And I was freaking out. And I had a conversation with him and he decided to send me his diary entries from this time of his life. So here is an excerpt from one of them. Speaking to people anonymously isn't enough. Eventually I will need to talk with people who know who I am. I have already started this step. On January 29th, I spoke through Skype face to face with a graduate student who goes to another school. She was the first person off of Aspie Central that I have told about my Asperger syndrome, my OCD, my depression, or my schizophrenia. And more importantly, she was the first person, other than myself, to know about my suicide plans. For my next step, I spoke with someone at my school's wellness center. That wellness center has a counseling service and I met with the counselor on February 14th. As of today, I've been alive for 21 years. In those years, I've learned so much about the world and so much about myself. I have learned that I'm not at all like everybody else and that that doesn't make me a human. So I was really happy to read this dire entry. But it made me realize that the impact I could have by being a step in this person's process of being able to understand who they are and to accept it in a way that is healthier for them. That's something that we do directly as researchers, not just in the publication of that research. So after you write up the research, then you're then left with the question of what does it mean for research to be complete? Or is it ever complete? For both Sarah and I, our process of co-learning with our participants is actually still ongoing. We both still maintain strong relationships with many of our participants through various outlets, such as social media, mostly, and email. For my field in particular with running works, many of the members have gone on, fortunately to secure employment opportunities. These are actual photos of members doing their various jobs on their first day of work. They've completed several marathons. They actually, there was a marathon in my hometown this past weekend. Several of them completed a marathon. One member completed an ultra marathon as well. The members also have kind of formed these informal networks with one another outside of running works. So they often tell me that these informal networks, since they know these people within the organization, will hang out with each other at the shelters, and it's a way for them to stay away from what they call the negative energy of the shelter and maintain a positive attitude. So they form these informal groups that they can then use as support systems for one another. They also are involved in outside volunteering opportunities. So for example, they'll man aid stations at different races where they give water to different people. And this is interesting to me because it helps to reframe the body as something that's active, right? Typically we think of somebody who is without a home as somebody who's in need of aid. But instead, in this case, they're the ones who are giving aid to other people. So that's really neat to see that type of outreach. And I still talk with Nick via Facebook. And he tells me a lot of the updates that are happening in the community. For instance, the diagnostic manual has changed since May of this year. And so Asperger's syndrome is no longer a diagnosis. And so I'm kind of tracing the impact that this has on a community of people who have a culture surrounding Asperger's syndrome. He also showed me an article from his hero, John Elder Robinson, who has just left Autism Speaks and has talked about how he doesn't feel his voice is being heard in the organization. So understanding where the disconnect is. He has a new avenue that hopefully I'll be able to research. So I know what we have been going on. So if you have any questions, I hope that you enjoyed our speech today. And thank you so much for coming.