An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers.

Abstract

Autism in AdulthoodAhead of Print Free AccessAn Expert Roundtable Discussion on Experiences of Autistic Autism ResearchersModerator: Patrick Dwyer, Participants: Sara M. Acevedo, Heather M. Brown, Jordan Grapel, Sandra C. Jones, Brett Ranon Nachman, Dora M. Raymaker, and Zachary J. WilliamsModerator: Patrick DwyerAddress correspondence to: Patrick Dwyer, MA, Center for Mind and Brain, University of California at Davis, 267 Cousteau PI, Davis, CA 95618, USA E-mail Address: patricksrdwyer@gmail.comhttps://orcid.org/0000-0003-1779-5252Center for Mind and Brain, University of California at Davis, Davis, California, USA.Department of Psychology, University of California at Davis, Davis, California, USA.Search for more papers by this author, Participants: Sara M. Acevedohttps://orcid.org/0000-0001-6729-3432Department of Disability Studies, Miami University, Miami, Ohio, USA.Search for more papers by this author, Heather M. Brownhttps://orcid.org/0000-0002-5290-0057Department of Educational Psychology, University of Alberta, Alberta, Canada.Search for more papers by this author, Jordan Grapelhttps://orcid.org/0000-0002-6633-8309Duke Center for Autism and Brain Development, Duke University, Durham, North Carolina, USA.Search for more papers by this author, Sandra C. Joneshttps://orcid.org/0000-0002-0258-3348Department of Engagement, Australian Catholic University, Melbourne, Australia.Search for more papers by this author, Brett Ranon Nachmanhttps://orcid.org/0000-0003-3066-0598Belk Center for Community College Leadership and Research, North Carolina State University, Raleigh, North Carolina, USA.Search for more papers by this author, Dora M. Raymakerhttps://orcid.org/0000-0001-8237-6041Department of Social Work, Portland State University, Portland, Oregon, USA.Department of Research and Education, Portland State University, Portland, Oregon, USA.Search for more papers by this author, and Zachary J. Williamshttps://orcid.org/0000-0001-7646-423XMedical Scientist Training Program, Vanderbilt University School of Medicine, Nashville, Tennessee, USA.Department of Hearing and Speech Sciences, Vanderbilt University Medical Center, Nashville, Tennessee, USA.Vanderbilt Brain Institute, Vanderbilt University, Nashville, Tennessee, USA.Frist Center for Autism and Innovation, Vanderbilt University, Nashville, Tennessee, USA.Search for more papers by this authorPublished Online:20 Aug 2021https://doi.org/10.1089/aut.2021.29019.rtbAboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack Citations Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail IntroductionHistorically, few autism researchers have been openly autistic. Indeed, the institutions, practices, and culture of autism research have largely been shaped by nonautistic people. Insofar as nonautistic people may struggle to understand autistic perspectives and communicate effectively with autistic people, as suggested by the concept of the double empathy problem1 and by empirical research,2–4 this could have serious repercussions for the quality and relevance of autism research. Fortunately, a growing number of openly autistic scholars have begun to make their presence known in the autism field.5 For example, autistic researchers are visible in the Participatory Autism Research Collective, in the International Society for Autism Research (INSAR) Autistic Researchers Committee, in social media groups for autistic researchers, and via the #AutisticsinAcademia hashtag, and through numerous other initiatives and organizations, including this journal. Although these autistic autism researchers might be well positioned to act as a countervailing force against the double empathy problem, being autistic in a field shaped and dominated by nonautistic people could also be a source of challenges and tensions. Unfortunately, no academic articles focusing on autistic scholars in autism research currently exist in the literature, which could impede efforts to promote the success of autistic autism researchers. This roundtable discussion provides an initial exploration of this important topic.This discussion focuses specifically on autistic scholars—such as graduate students, postdoctoral fellows, and faculty—who are conducting autism and disability research. We chose this focus to allow a more in-depth discussion. As such, this roundtable does not focus on the involvement of autistic people in autism research as community partners or coresearchers. Although the involvement of autistic community members in research teams is an important topic for the field, it has been discussed in other publications.6–11 Furthermore, while the accessibility of university-based clinical programs (e.g., medical, education, social work, and clinical psychology) does affect the representation of autistic people in occupations that are responsible for providing important services and supports to autistic individuals, this is a distinct and separate topic from autism research. Finally, this roundtable does not explore experiences of autistic people conducting research in fields unrelated to autism. It is possible that being an autistic researcher in nonautism fields may be associated with some tensions and challenges that meaningfully differ from tensions facing autistic autism researchers.Mr. Patrick Dwyer: Today, we have brought together a group of autistic scholars to highlight the contributions that autistic autism researchers are increasingly making to autism research, to discuss the challenges and tensions that autistic autism researchers still face, and to explore and suggest changes that might address those tensions and ensure that autistic people can thrive as autism researchers.We strove to ensure that this panel would include a diversity of perspectives. Our panelists are autistic researchers who conduct a variety of different types of autism and disability research, including basic science, applied research, and humanities scholarship. Our expert panelists also come from a variety of career stages, from graduate students through senior faculty. Furthermore, several of our expert panelists not only have personal lived experience of being autistic in academia, but also have experience conducting research regarding, or engaging in service or advocacy on behalf of, the emerging community of autistic people in academia.We will begin our discussion by asking each of the participants in our discussion to introduce themselves.I am an autistic PhD candidate at UC Davis, where I primarily focus on researching sensory processing, attention, and hyperfocus in autism. I also do some research regarding other topics, such as neurodiversity and education. I am one of two Co-chairs of the INSAR Autistic Researchers Committee. Finally, I facilitate a UC Davis peer support community for neurodivergent students, and the membership of that group includes both undergraduate and graduate students.Dr. Sara M. Acevedo: I am an assistant professor of disability studies at Miami University, where I have been on the tenure line for close to 3 years. I am a linguist, anthropologist, and disability studies scholar by training. My work is situated at the productive intersection of spatial politics, self-governance, and transgressive discourse—neurodivergent grassroots organizing is a central topic in my research. I use critical qualitative methods and collaborative/emancipatory research; I identify as a scholar–activist.Dr. Heather M. Brown: I am an associate professor in the department of educational sychology at the University of Alberta in Edmonton, Alberta, Canada, where I try to help current and future educators understand how to best support neurodivergent students in the regular classroom. My research aims to uncover strategies to support the academic achievement and overall well-being of autistic children, youth, and adults.Mr. Jordan Grapel: I am currently a clinical research specialist on the neuroscience team for the Duke Center of Autism and Brain Development. I run most for our electroencephalography (EEG) and eye-tracking sessions for a number of different studies that all generally try to identify biomarkers for autism.Dr. Sandra C. Jones: I am the pro vice-chancellor, engagement, at Australian Catholic University in Australia. My research focuses on autism acceptance and inclusion, primarily the experiences of autistic adults in education, employment, and engagement with the community.Dr. Brett Ranon Nachman: I am a postdoctoral research scholar at the Belk Center for Community College Leadership and Research at North Carolina State University. I am the director of research for the College Autism Network as well. I am studying higher education, and one of my main areas of focus entails uncovering the experiences and perceptions of autistic college students. Each year I work with my colleagues in developing the College Autism Summit that invites autistic self-advocates, practitioners and scholars, educators, and community members as we address issues facing research and practice related to autistic college students.Dr. Dora M. Raymaker: I am a systems scientist and research assistant professor at Portland State University's Regional Research Institute for Human Services, in the School of Social Work. I am also the co-director of a community-based participatory research group, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE; aaspire.org). I conduct applied services and intervention research. My current focus is on improving employment outcomes for autistic people in skilled settings, including research.Mr. Zachary J. Williams: I am an MD/PhD candidate in neuroscience and hearing and speech sciences at Vanderbilt University in Nashville. My research focuses on measuring and predicting the health and well-being of autistic adults, with a specific focus on mental health symptoms and sensory differences. I also serve as the secretary of the INSAR Autistic Researchers Committee and as a member of the Autism Intervention Research Network on Physical Health (AIR-P) Autistic Researcher Review Board, and also a consultant for Roche.Mr. Dwyer: Thank you all. Let us move on to the questions. First, how has your autistic identity impacted your research? What led you to pursue autism research? Are there other identities intersecting with autism that have affected your research?Dr. Acevedo: Yes. I cannot speak of my autistic identity without simultaneously drawing attention to the fact that I am a Mestiza woman, an immigrant—I was born and raised in Colombia, South America—and someone who lives with chronic illness. I have written at length about the compounding impact that my gendered and racialized identities have as they intersect with my disabilities. I center lived experience and situated knowledges12 in my research—in other words, there is no view from nowhere or decontextualized research method that I think has as much impact as embodied knowing does, at least when it comes to social justice and sustainable transformation. Others will of course beg to differ.Dr. Brown: I first truly learned about autism as an elementary school teacher in the Canadian educational system. There had been a little boy with autism in my grade 2 class and I soon began to wonder whether my grade-2-self would have looked and acted much as he did. At the same time, I was also a relatively new mother of my own neurodivergent son. After doing a great deal of reading, talking to therapists, and getting a formal diagnosis, I made the difficult decision to leave the classroom and return to grad school. Given my love of psychology and learning along with my new understanding of my autistic traits and aptitudes, I wanted to explore whether scientific research and academia would be work environment within which I could thrive. And, in many ways, it has been a really good fit. Lastly, although there have been many systemic barriers in my life, I also want to acknowledge that I have had a great deal of privilege to be where I am today.Mr. Grapel: I would say that out of my many identities, autism has definitely been the one that has been the most impactful on the course of my life. I am also a cis half-White Jewish male, so I like to call myself the worst dancer on the planet. But I was not told about my autism diagnosis until I was about 15 years, and I did not think much of it until a few weeks later, when a club that I was in basically lied to me and tried to have meetings without my knowing, and that was one of the worst days of my life. I basically realized that everything that happened there boiled down to a lack of understanding between both them and me about social protocol: me not understanding social protocol and them not understanding how to deal with me. That experience made me want to help other socially awkward kids with Asperger's, like me, not have to deal with that in the future, and that is why I am here.Dr. Jones: I first began working in autism research before I was diagnosed, but after both of my sons were diagnosed. I had always been interested in the area, but for a long time I stayed away from actively researching autism, because I bought into the prevailing mythology that people instill in you: my personal connection to the topic would make my research less objective and, therefore, less valid. I certainly do not hold that view now, but at the time I took that on board. I took my first tentative steps as an autism researcher after my children were in their teens, because I was just so frustrated with the issues they experienced and the very scientific and ableist body of literature that was available. I started with researching the media representation of autism, then the experiences of autistic adolescents and their families, and this grew to become a much broader body of research. It was not until my formal diagnosis that I began to identify specifically as an autism researcher rather than a researcher who does some autism-related projects among other things.Dr. Nachman: In my research endeavors, I always recognize the privileges that I carry as a White cisgender male whose societal status as a recent PhD positions me in a powerful role, so my perspective as an autistic person is truly one of many, and I feel it is my responsibility to broaden conceptualizations of who belongs to this very diverse and rich community. Being gay adds another dimension to my work, and that has enabled me to uncover the nuances of “coming out” within both the LGBTQ and autism communities. I grew to study autism in higher education and later to do work related to LGBTQ+ campus climates as a reflection of my desire to be more connected to communities in which I belong, which I did not do much during my youth. My research aims to elevate autistic college students' perspectives that have long been absent from higher education scholarship until more recently, so I consider it a duty to carry my viewpoints of the world alongside those of autistic participants to the forefront of stakeholders' attention, especially because there are sadly very few autistic voices in higher education research engaging in such inquiry.Dr. Raymaker: I started out on the activist side. Before I had a disability identity, I go back to the old gay rights stuff in the ’80s. That is where my activism started. Later I got much more involved in the autistic rights community. I was doing science before then—my graduate work was originally going to be in computational intelligence. Then I started AASPIRE, and I realized that my science could be activism, and I have never looked back. I see community-engaged research as a way of shifting the system.13,14 I see it as a form of activism. I see elevating community voices in science and ensuring “nothing about us without us” in science as a part of all of that. I also think that the pragmatic nature of services interventions could have an impact on people's lives today in terms of advancing justice agendas.Mr. Williams: I think my foray into autism research was almost an accident. I had decided on the path of going into psychology and neuroscience when I was starting out in college, and then as I started to define the scope of what I wanted to do for research, I just found some of these opportunities in the autism research community at Yale. I was drawn to the topic because of the personal connection, and I really never looked back. I think it has been something that has driven me: as with the rest of you, I definitely feel like my work is both impactful on a scientific scale and to really truly improve the well-being of other autistic people. And I would like to think that by combining a scientific career with the community priorities, that will eventually lead to a generally increased health and well-being for many autistic adults—and children, for that matter.Mr. Dwyer: Thank you so much for providing those thoughtful reflections, which I especially appreciate because I realize one's identity is inherently a more personal topic than most academic discussions. Zack, your last reflection also provides a perfect bridge into our next question: what value do you feel autistic researchers bring to your area of autism research?Dr. Acevedo: As someone who uses critical pedagogy to decenter dominant epistemologies in the classroom, it has been rewarding to use autoethnography to document how autistic embodiment, which Yergeau15 describes as “cunning” while astutely reclaiming the term, can truly transform a learning space and a community of learners. Autistic “motioning” (another of Yergeau's terms), which I describe as a form of “neurosomatic expression,” interrupts expectations of linearity and disrupts the focus on productivism that characterizes neoliberal education (as an exchangeable good—“what can this degree buy me?”). This of course comes at a cost for gendered and racialized faculty like myself.Mr. Grapel: In general, I think that the obvious benefit that autistic researchers have to autism research is just more actual lived experience with autism and consequently being able to understand, instead of viewing autism from the outside looking in. This lived experience can, as Zack was saying, help us figure out how the research that we are doing can help autistic people fit more easily into and be more helpful citizens in the communities we live in. It creates more of a chance to genuinely contribute to improving quality of life for autistic people. How will what we are studying actually improve our lives in the ways that we see as being valuable? Because what the general world considers important for living life is not necessarily what we want out of life.Dr. Nachman: My autistic identity enables me to conduct research with a strong attention to detail and with enhanced consideration toward alternative ways of processing and relaying information, as well as to empathize with participants and colleagues through having certain lived experiences that may resonate in a system cultivating trust. The beauty in the autism community is its vast diversity in viewing, processing, and relaying new knowledge about the world. Autistic researchers are necessary in higher education scholarship because they provide a distinct stance on issues facing marginalized communities, particularly in relation to helping scholars further disentangle often singular understandings of disability. Through more of us having a more salient role in academia, we can interrogate neurotypical norms, offer a platform for individuals whose perspectives have far too long been overlooked, and provide mentorship for the next generation of autistic scholars.Dr. Jones: I think that autistic researchers bring a variety of strengths to any area of research, not just autism research. All of the autistic researchers I know are extremely focused on, and very passionate about, their areas of research. They want to know everything there is to know about the topic; they are committed to doing the most comprehensive and high-quality research; they have terrific attention to detail; they are perfectionists. They bring lots and lots of strengths and value. In relation to autism research specifically, I think they also bring a breadth of knowledge about autism that is not found in books, and an insight into areas that are under-researched or poorly researched. They also have a genuine awareness and acceptance of the fact that every autistic person is different, and that everyone has strengths to contribute, not just challenges to be addressed. Unlike many nonautistic researchers doing autism research, they have a commitment to truly inclusive autism research that sees autistic people as collaborators, not just as test subjects.Dr. Raymaker: Everybody has made some really great points, but I particularly agree with what Sandra just said. I would also add that I think autistic researchers are able to develop better and more effective research designs because we understand the relevant access needs and community priorities. I think that leads to better data collection, better samples, and better research questions. Because of the insights we bring with us, we are in a position to do better research.Mr. Williams: Like Dora, I think that most of the points that I would have made have already been made by everyone else, though I do think one thing that is particularly worthwhile is the ability of autistic people to, in many cases, become the researchers themselves rather than simply being community partners. Yes, having lived experience is good and certainly contributes to the research endeavor, but I actually think that the most valuable lived experience is that which is combined with a traditional education in a given field. That can allow us to then question some of the norms in those fields and use new language to actually move the fields forward toward a set of questions and principles that are more in line with the autistic perspective, as it were.Dr. Brown: I really agree with what Zack just said: the idea that autistic researchers have, much like our indigenous colleagues, a foot in both worlds. We understand the values and the traditions of our disciplines and we understand the lived experience of being autistic. Living as an autistic neurodivergent brain in a world dominated by neurotypical brains is often difficult. Our intense interests, our ways of thinking, and our behavior are often interpreted under a neurotypical lens, which at best means that our behavior is misinterpreted and it often leads to psychological harm.16 Thus, my autistic brain enhances the quality of my research, because I am much less likely to misinterpret the intentions behind the behaviors of my participants.Dr. Acevedo: Perhaps we can all agree that autistic people embody resistance just by virtue of existing? Staying alive in a world that has tried to erase us from the human pool is truly revolutionary. That is precisely why our role is invaluable in reclaiming and actualizing our own stories so that we may decenter the epistemic monopoly that nonautistic professionals have historically held over our embodiminds17 experiences.Mr. Dwyer: Thank you all for describing those numerous different ways in which our presence could enhance the field of autism research. Sara, your last comment about our survival in a world dominated by nonautistic people also provides a perfect bridge into our next question: do you think that there are tensions or conflicting expectations and goals that can particularly affect autistic researchers, especially given that the autism research field has been predominantly shaped and inhabited by nonautistic researchers?Dr. Acevedo: I am often asked for resources about—and I quote—“ASD” in various spaces. This is of course unpaid labor that comes with added microaggressions that begin, but do not end, with wording and terminology choices. My responses, depending on context and on how comfortable or safe I find myself in those situations, often touch on our community's language uses and choices. I make it a point to explain that generally, although not always, neurodivergent activists and scholars tend to refrain from using the language of disorder. It does not really align with our views, ideologies, or cultural approaches to neurodiversity, which is considered an integral part of the human experience. As a bonus, my comments always include a list of sources to encourage independent research that does not bank on the intellectual and affective labor of an oppressed group. I guide people to survey literature coming from either critical autism studies or critical disability studies, if they wish to truly learn from our own process of knowledge production and overall cultural kinship systems. Mind you, the topic of autism, theorized by autistic scholars—which is fairly new due to the monopoly of the medical and therapeutic establishment over our lived experiences and ways of knowing.Mr. Dwyer: Thank you. I suspect that many people here have similar experiences of being asked to provide our insights as additional unpaid labor. I certainly have, and yes, I am seeing several of our panelists nodding in agreement.Mr. Williams: As someone who primarily works in the biomedical field and in a clinical program, I think I do encounter a lot of the medical model, and I am probably a bit more tolerant of it than many of autistic people. I do think generally that it is very interesting to see how researchers over the past several years who have listened to the social justice movements of autistic people have tried to incorporate neurodiversity principles into what is still relatively a medical model-heavy field. Indeed, I really think that we are in a point of transition right now in many of the more psychological brain sciences. On the one hand, many people are still engaged in traditional research, that is, “Let's look at cause, prevention, cure,” but I also think many more people have now shifted toward asking, “Okay, what are the actual outcomes that matter?” developmental milestones, quality of life, etc. In some ways the tensions between these two different research agendas seem to reflect differences in the goals of many younger early career professionals versus the goals of older established professionals.Mr. Grapel: I agree with a lot of what Zack said. I am definitely noticing much more of a shift away from a cure and more toward effective treatment. For example, one thing that I really love about my laboratory is that I have not personally experienced a lot of tension in terms of cure versus where we practically go from here, because I feel like many people are starting to understand that the idea of a cure is problematic. What would “cure” actually mean? What are we curing? So the goal is not necessarily about trying to get rid of the autism. It is about figuring out what things about autism are actually problematic for executive functioning and daily living, and how to train and teach the skills necessary to live without sacrificing the things that make your autism an advantage.I will also say, and this might be a slightly unpopular opinion: I have never been a huge fan of the way that some people tend to focus on identity and specific language. I can see its value in terms of people and how they view themselves and how they talk to each other, but as an autistic person in a research laboratory, there have been occasions where I have been asked how I feel about a certain language that is used, like person first versus identity first versus all the other different ways we could write about autism in the article. Every time that question comes up, it kind of bugs me because I get that we are trying to be respectful, but it seems like it is detracting from the research we could be doing to actually improve people's lives. It feels like that kind of stuff can come later. But I do not know. I am sure that there are people who disagree with me.Mr. Williams: Jordan, I tend to feel the same way. I have definitely seen some people dismiss entire articles because of their use of language rather than their scientific merit, and that bothers me.Dr. Acevedo: My view is that language is a technology of power that works to create compliance and homogeneity. Everyday language use is not exempt from the logic of normative social arrangements built on multiple exclusions. Discourses that sustain said arrangements manifest through practices and policies that affect our lives in very tangible ways. I am very interested in challenging the idea that language is not as important an issue to address.Mr. Dwyer: I think it is definitely okay for us to disagree and have friendly controversy and debates between ideas.Dr. Brown: I agree! There are important points on both sides.Dr. Acevedo: Yes, absolutely! And the fact that we do not agree about everything reflects our plurality as autistic people and as researchers.Mr. Grapel: I would not say that language is not important. I would just say it is not the most important thing, especially when we are talking about research that can affect people's lives.Dr. Acevedo: Materially speaking, language affects people's lives, though. To clarify, I did not mean to suggest you said it does not affect people's lives, but rather that it is a common argument that people express by saying we have “bigger fish to fry,” and I simply disagree with the idea that language orbits outside other systems of oppression.Mr. Grapel: Yes, but I would argue that effective research has a larger impact in people's lives, and I would personally rather see an article with an outdated term make it to publication than see an article be killed because of the language when it has got strong merit and can help people right now. I have seen articles stalled for that very reason and it is infuriating to me.Dr. Acevedo: I respectfully agree to disagree.Mr. Gr