EPISODE 29: FTW! New study reveals how autistic college students define success - how students describe progress beyond grades

Data recently collected from over 400 college students on the spectrum shows that most feel protecting their mental health is often as important as getting good grades and graduating. The typical college goals are not so surprising, according to Professor Brett Ranon Nachman, an autism self-advocate and education researcher at the University of Arkansas. "But the findings about prioritizing mental health, finding friends, and avoiding burnout are significant. Students are saying success is important but not at the expense of their mental health." In the first wave of the study, Nachman's team, led by Dr. Brad Cox at Michigan State University, has collected data from students on the spectrum at over 100 colleges and universities around the country. It’s one of the largest data sets provided by students on the spectrum to date. But it's not just academic. The team plans to use the data to help colleges and faculty understand what autistic students are looking for in their college experiences and how to help autistic students find success. One goal, Nachman says, is to help universities see the growing number of students with autism on campus as an opportunity, not an issue.

Transcript

SPEAKER_02 0:08

Now that I'm genuinely enjoying my social life at Hamilton, I'm more incentivized to actually be social.

SPEAKER_00 0:15

Having autism isn't something that should prevent people from having a successful college experience. It takes work.

SPEAKER_01 0:23

Join clubs, find groups, find your people, find ways to fit in, see a peer mentor, see somebody who can help you get involved on campus.

SPEAKER_07 0:32

There were a lot of black children on the spectrum who were also deaf. She's not the first one.

SPEAKER_08 0:36

I researched all of the majors and I eliminated the ones that sounded not interesting to me. So then I changed it to chemical engineering to work with chemistry. Then I took an environmental science class and I'm like, I think environmental issues are really important, and I'm really passionate about sustainability and stuff. So then I changed it to finally environmental engineering.

SPEAKER_04 0:56

Especially in a college town like OutdoorDash. Like, just go out and get the food. That's good exercise.

SPEAKER_03 1:08

Hey everyone! Thanks for joining us on this episode of Autism Goes to College, the podcast for students on the spectrum and for everyone who supports us. Navigating college is always a challenge, so here are the hacks, insights, and great ideas you've been looking for to make college work for you. We're a small group of self-advocates. We're all in college or recently graduated, and you can do this too.

SPEAKER_09 1:36

Hey everyone. Eric Linthorse directed the film, and it premiered at the Newport Beach Film Festival in 2019, and was also selected to screen at South by Southwest EDU in 2020, which of course happened online. At the end of this episode, I'll give you some details about where you can see the film today. And it's all at our website, autismgoes to college.org. So, with screenings limited since the pandemic began, the team wanted to open up the conversation and created this podcast. The first five episodes featured the stars of the film, talking in more depth about their college experiences and what they are up to now. And since then, we've talked to students on the spectrum all over the map, sharing all kinds of experiences, working towards degrees and certificates around the country, plus a college counselor, parent perspectives, and admissions officers. Every month we drop a new episode. Here's what's also new: there's a resource center on our website with dozens of outtakes of important stuff that didn't quite make it into the film, all of the podcast episodes, and blogs from experts and from student advisors from the film. Fun fact: this project was recognized as best of the internet in 2022 by the Webby Awards Anthem Awards, winning gold for diversity, equity, and inclusion. And we keep making it better. This podcast is here for us to share and open up the conversation and include more insights from self-advocates on the spectrum. Same with the Resource Center. So reach out if you'd like to get involved or have ideas for us. Let us know what would make it more meaningful and valuable, or what you'd like to contribute. And thanks for listening. We do hope to hear from you. Now. Our guest today, Dr. Brett Nockman, is a self-advocate who began his college trajectory as a student in community college in Scottsdale, Arizona. And now he's a professor of adult and lifelong learning at the University of Arkansas, looking at how college students on the spectrum are finding and even defining success. For listeners to this podcast who know that I'm a PhD student with similar research interests, including autistic identity development, it will be clear as to why I am so excited to be having and sharing this conversation with you. What success looks like for college students on the spectrum is a question that only the students themselves can answer. And that is exactly the kind of data that my guest has been collecting and publishing about. Brett has written more than 20 peer-reviewed journal articles and received multiple national awards and fellowships. The most recent grant is an incredibly prestigious Spencer Award for his role as a co-principal investigator on a national study of college student success that we'll be talking about on this episode. Brett's research also focuses on community college access and equity issues and LGBTQ campus climate. He serves as the director of research for the College Autism Network, a nonprofit centered on serving autistic college students via advocacy research and training. Thank you so much for joining me in this conversation, Brett.

SPEAKER_05 5:16

Thanks for having me, Catherine.

SPEAKER_09 5:17

So you are an academic researcher looking to answer questions about how autistic students are finding success in college and even how they think about what success in college might look like or might represent for them. Can you start off by explaining how you got interested in exploring those questions in research?

SPEAKER_06 5:38

Yeah, my interest, my professional interests related to autism and higher education very much stem from my personal experiences as someone who has navigated higher education for the past 15 years almost as an autistic person, starting when I began my community college student journey when I was 17, up until uh graduating with my doctorate a few years ago, and now the more recently, the past couple of years, as a tenure track faculty member at the University of Arkansas. As an undergraduate and graduate student, I was constantly trying to make sense of how do I make the most of my college experience. So I looked at that from the standpoint of where I wanted to go professionally. At first, it was in journalism. And then in graduate school, I pursued a and obtained a degree in uh educational leadership and policy analysis. But it was when I was an undergrad that was a really formative time for me because I was uh very much keeping my autism diagnosis to myself in my community college years. I don't think there was nearly the level of autism awareness or acceptance uh back then as there is today. But I was an active campus leader, leading student organizations. And when I was invited to serve as our community college student commencement speaker, I used that as an opportunity to disclose my autism and talk about my experience. You know, people had seen me always around campus and putting on events, developing programming, but nobody really knew the challenges that I faced by virtue of not necessarily my autism, but rather how society engaged with me as an autistic person, but not necessarily always knowing it. And and it was a really formative moment for me. There was a lot of pride associated with it, and it ultimately propelled a professional direction. So by the time I was exploring graduate school, I realized all the activities I most enjoyed really stemmed from being engaged in academia. So when I started graduate school, it was to primarily uh engage in research related to community college transfer students, and that's and that's still an active part of my uh research agenda. But I realized to produce the best possible work, I needed to fully own all the different parts of my identities and experiences, and that's where I wanted to really more deeply explore autism in in higher education, the experiences of autistic college students. Um when I started about eight years ago, there wasn't much research about autism and higher education. It was very limited, focusing a lot on faculty and staff perceptions, not so much the student experience. And so that's where I felt like there was an opportunity for me to contribute to the conversation as an autistic autism higher education researcher who wants to bridge the gap between research and practice and also make sure that autistic individuals' perspectives and insights and strengths and skills really take center stage.

SPEAKER_09 8:46

You alluded to the gaps in the research when you started eight years ago. What was the literature out there when you began?

SPEAKER_06 8:57

Great question. Uh so as I think back to a lot of the research from before 2015 when I started graduate school, what I saw was for one, there wasn't much research stemming from folks like me who study higher education as a field, which is very different than if you're approaching it from a sociological lens or a psychological lens. A lot of the research was really prioritizing parents' perspectives, sometimes staff and faculty here and there, a lot on high school and transition age students, but not so much in the way of research studies that actually featured autistic college student participants. Not to say it was non-existent, but it was rather hard to find. Additionally, more so then than now, the language could sometimes be a bit more deficit-based in nature and not, again, accounting for that holistic perspective of the autistic college student experience.

SPEAKER_09 10:01

So, with relatively little published, how did you know what the most important thing to start was? It seems like you could have done anything, and a novel contribution still would have been novel.

SPEAKER_06 10:15

For me, a great starting point was community colleges because that's that's what I came to graduate school to do. But in thinking about how do I integrate autism, I actually what started this whole journey was reaching out to at the time she was at the University of Wisconsin, the faculty member, Dr. Kirsten Brown, who had published some work on autism in higher education. And so I saw that she was at my same university and thinking, oh my gosh, this could be a perfect opportunity to engage with someone who has similar priorities. And uh we ended up collaborating within a matter of months, and our first paper was on how community college websites portray autism. So this was an opportunity to view data as not just human data, but also what are the narratives that we're conveying about autism on websites, which are such important mechanisms for individuals to learn about what a university or college can offer. So we engaged in an analysis of nearly a hundred community college websites. So everything from disability service pages to syllabi to uh events and other statements. And what we found was that there was a lot of omission of autism and a lot of othering of autism, and those two words surfaced in the title of our article. So that was a starting point, and from there it was some independent inquiries, but also collaborating with other folks who shared similar interests. So I engaged in a systematic literature review with Dr. Brad Cox. Uh, at the time he was at Florida State, now he's at Michigan State, and he's my primary collaborator on the Autistic College Student Success work. I engaged with Dr. Ryan Miller and folks in our understandings of the intersection of autism and LGBTQ individuals. Um, and one of those pieces involved narratives from eight students who belong to those shared communities.

SPEAKER_09 12:14

That's incredible. You have a big study of autistic college students that is in early stages. Can you tell me a little bit about that methodology? Are you getting a lot of respondents?

SPEAKER_06 12:27

Absolutely. So this project really stemmed from the fact that we've seen a lot of important and really good research on autistic college students, but most of it to date has been very small scale in that often studies, and including some of my own and my dissertation work, limited to individual programs or colleges. What we haven't seen so far is a very vast national data set of autistic college students. So what we're really interested in is giving students the opportunity of sharing what matters to them and without any preconceived notions, right? Success for one person might be getting good grades, another person it might be building a community of friends, another could be uh having an internship. And so our study explores just that how do autistic college students define their success, what factors contribute to their success, and ultimately what could better support their success. And we'll use all of this information to help guide practice, to guide folks in not only our discipline, but in autism research and other interdisciplinary spaces. We launched the study in fall 2022. We had a very favorable response of about 430 participants across more than a hundred colleges and universities in the United States, which, for context, is actually among the largest studies in the States on autistic college students. And we've we obtained various grants, including a Spencer Foundation large research grant, to support this work. So that means over the next three years at least, we will be able to gather new information about autistic college students' experiences and follow up with students from year to year so we can find out to what extent their ideas of success may change over time by virtue of new situations emerging. So our study involves a survey, and then folks are also eligible to indicate interest in participating in an interview or a photo elicitation activity where they would uh submit pictures that are illustrative of success for them based on some prompts time so that it's not just us on the research team who has access to it, but also as this becomes larger, uh enable other folks to have the opportunity to pose specific questions that matter to them, and hopefully we would have data that we could share with them that will uh help them toward that end.

SPEAKER_09 15:04

That's incredible. Um how do you ask survey respondents to identify themselves? And then how are you verifying their responses to make sure that there's integrity in the data set?

SPEAKER_06 15:19

Uh at the beginning of the survey, we ask individuals about their autism diagnosis. So we'll ask, you know, what is your diagnosis? So is it a formal diagnosis? Is it a self-diagnosis? Are you in the process of being diagnosed? All of those factors account for yes, you you would be able to take the survey. So we have a number of different measures on our end to try to verify the legitimacy of the data. Um, and part of that also goes back to their consistency and how they're answering questions and also making sense of some of their uh open-ended responses as well.

SPEAKER_09 15:57

Absolutely. I like that you're focused on how students understand their own success. What are some of the responses about success? Is it academic success, more social success, very personal success?

SPEAKER_06 16:15

So, what you just named there were actually three major domains of success that we're seeing surface in our responses. Um, so the academic piece, um, the social piece, which we would uh put under the umbrella of community, and then the personal part, which has a lot of different dimensions. Uh, we also have a domain that we call identity. Um, so understanding the individual, but also uh from the lens of the social identities that they carry with them, autism and other salient identities in their lives. And you're right, uh success is can be any or all of the above. Uh we also are accounting for students' mental health. We're seeing a lot of conversation around burnout and and stress and dealing with uh anxiety and depression, to be sure. Employment, too, folks with career intent and wanting to capitalize on their passions that will serve them in professional roles during and beyond college. Um, success is very varied, uh, it's very contextual, uh, and it's often not limited to one domain. So in our survey, we'll ask questions related to those open-ended questions in terms of definitions of success, contributors to success, and what would support your success. We pose those open-ended questions prior to asking a series of scales uh with items about specific items that relate to, like where people rate how important is this to your success, et cetera. We do those open-ended questions first because we don't want students or or participants to come up with the expectation, oh, I've already seen these keywords, so I must write about that, right? We want it to be very natural, but sometimes students are really emphasizing the value of their academic performance because of societal expectations and even their own expectations that, oh, getting good grades, graduating, that all matters. But sometimes with the caveat of like, I don't want to compromise my mental health in order to be academically successful. So we'll see nuances related to that surface in the findings as well. Ultimately, what I'm gleaning from our wave one data, as we call, which is all the data from fall 2022, last year, at the time of recording this, it's we're actually in the middle of wave two. What we're seeing is that it's all over the board in terms of how students define success and what could help their success. And we find it really viable to uh try to capture as many of those stories as possible by virtue of some materials that we're creating. We have fast facts on our College Autism Network website, which aim to just distill some of the data and having presentations about some of our findings, and ultimately we'll be developing journal articles and materials directly to support some of the key stakeholders as part of this work, including parents and faculty, staff, students themselves. So all that's in the works, and we want to be able to tell those full stories.

SPEAKER_09 19:17

Considering that you are in the midst of getting a second wave of participants, I'm wondering if you could say a little bit more about recruitment. I'm sure some people that listen to this conversation will want to know how they could contribute their insights to either this project or other related work.

SPEAKER_06 19:35

Absolutely. Yeah, we'll be collecting data through uh mid-December 2023. Um, and again, to be eligible, you have to identify as autistic. You have to be an undergraduate college student, and you have to be in the United States. That just establishes kind of the scope and boundaries for our study. And yes, we would welcome people to participate.

SPEAKER_09 19:59

So, your research, you talked about having both scales and more open-ended narrative or or image-based questions. I'm wondering if you could talk more about the framework you're using to draw out at your participants and where that came from.

SPEAKER_06 20:18

So, the framework question is kind of interesting. We're certainly inspired in many ways by this theory that has been around for a number of decades in higher education spaces called the IEO model. So that's inputs, environments, and outcomes. And so the notion of valuing outcomes and what that might be for different students. But mind you, that framework, as valuable as it is for many of us, was designed decades ago and not necessarily with neurodivergent voices. So, what we actually have in concert with kind of keeping that as a lens for us, we actually developed our own framework, which in many ways is a reflection of the literature on autism in higher education, but also more inductively stems from what we've seen in our first year of data collection of what students are mentioning as domains of their success. And so we came up with IPACE. IPACE stands for identity, psychology, academics, community, and employment, which, as I mentioned, are the five major spheres of not only autistic students' lives, but all students in many ways. We certainly recognize those as very salient in the initial Wave One findings, where we can sometimes see where, for instance, a faculty member can be a great support for a student. Do you view that as an academic piece of support, or if you are you viewing that under the community umbrella? An argument could be made for either. But ultimately, IPACE is our framework that is really enabling us to appreciate the holistic, autistic college student experience.

SPEAKER_09 21:54

Have there been surprising findings that have surfaced thus far if you're at Liberty? To share them?

SPEAKER_06 22:01

Yeah. Well, I can share a little bit from the not only in terms of the content, but I think it's also worth noting from a demography standpoint in terms of who's part of our sample. So we we alluded to earlier that many folks in the autism community are also in the queer and or trans communities, and and vice versa. A very strong proportion of our sample from wave one identifies as queer and or trans. A more encompassing term, if you will, would be the queer spectrum. I, if I'm, if memory serves me right, I think about three-quarters of our participants uh were in that space or have those those shared identities, which is, I think, very important for folks to recognize because there's a lot of very fascinating nuance regarding masking and coming out and making sense of priorities in life by virtue of those more non-apparent identities. And what we're also seeing is that students, autistic students, sometimes but not always, see autism as a disability. And a lot of that is contextual and based on their own level of autistic pride and comfort with themselves. Demographically, we're also seeing many folks who are community college students. I think we are a little bit surprised that there wasn't as many in our wave one, but we're also uh exploring those who identify as community college transfer students. A lot of prior research indicates that a high proportion of autistic learners in higher education go through community college at some point, much like myself. And that's very true. We're trying to interrupt the narrative, and I think our our sample uh communicates this to some extent is that the autistic undergraduate college student experience is not just that of a white cisgender male. It's rather someone who may have a variety of privileged and or minoritized identities in tandem. From a content standpoint, one of the surprising findings that I recognized so far is that friends account for by far the most significant type of helpful support that students are mentioning, more than other people and stakeholders, more than even certain resources. And mind you, that's that's reflective of wave one, and we'll see what happens with this current wave. But um, that's been really enlightening. It's it really reaffirms this notion of that autistic folks seek social relationships, but they're not, there are not always the structures that make it easy to facilitate them. But students often lean into that. Many students have indicated the value of roommates if they're in a campus housing situation or being part of uh a student organization, folks in those spaces, among others, as being really helpful and helping them feel successful.

SPEAKER_09 24:51

And how do you anticipate the inquiry changing over the next couple of years as student responses come in? Or is it difficult to say uh what students may come up with that will change your directions?

SPEAKER_06 25:04

Yeah, that's an excellent question. Uh, I think I imagine over time we're going to have the opportunity to really uh deconstruct the data, um, hone in on some of those domains more individually, because certainly there's increased attention toward autistic folks becoming employed. And so even if not everybody communicates that always as a measure of success, we still want to uh identify what roles our students are having on our survey. We ask about their professional experiences and what types of positions they're in or hope to be in. We we think that's a really um unexplored area. We're seeing some great work in a variety of autism scholarship around uh autistic graduates uh employment and their pathways. I think of the work of Jonathan Vincent and others in the UK among other folks, and we know that this is an endeavor that is going to grow over time, but also requires the support of um people all across the United States because we we're not only doing this to contribute to the scholarship, which is helpful, and people read journal articles here and there. We we want to inform real change. And and when does real change happen on college campuses? It's when you have data. That's what's that's what often makes a difference. And importantly, perspectives that are are directly from the autism community. So it's really thoughtful and authentic.

SPEAKER_09 26:27

I'm glad you brought up the critical role faculty play. As a faculty member yourself, I'm wondering if you can talk a little bit about faculty training and faculty needs around understanding this. We recently had another faculty guest on the podcast, and he talked about how there are some trainings, but at least on his campus, they're totally optional and you have to seek it out.

SPEAKER_06 26:50

For sure. I think many more college campuses are seeing the merits of a professional development on this front, and that's a pure reflection of that. Colleges are experiencing this influx of autistic learners, some who are formally diagnosed and others who may end up revealing at some point in their journey or obtaining an autism diagnosis at some point in their student experience. And many faculty are simply unaware of how to engage with autistic learners and knowing how to support their success, which connects back to this inquiry. And I'm one to always want to believe that faculty have good intentions, but may not always know what to do. And I think it is good if colleges invest in professional development. At College Autism Network, we have this group called the Consultants Collective, which involve practitioners, a few researchers like myself and others who, many of whom are neurodivergent or autistic themselves, who provide services to lead campuses in discussions around autism and neurodiversity and inclusive teaching and training. And we want to try to push the conversation on being more proactive and thinking. So we see a push for increased and consistent faculty development. It's easier said than done, and campuses need to demonstrate that investment that responsibility should not fall to the student to have to teach everybody else about what autism is. It needs to stem from the institution making a concerted effort. We hope to be part of that conversation and already are. In fall 2023, I had five different presentations at different colleges this semester where I was communicating about uh how to support your autistic students and discussing this work related to autism and higher education. And the work shouldn't just fall on folks like me who are uh engaging in research around this. It should be autistic self-advocates who are willingly and and being honored for their time and labor and efforts and insights to share their perspectives, right? Panels, panels on campus are so much better when you're learning from the students themselves, but they need to be rewarded and honored for their efforts, not in a tokenistic way, but rather in a manner where they feel like that they are actually shaping the discourse.

SPEAKER_09 29:13

And as we know, funding uh in higher ed and in anything that's funded by federal grants flows to where we can make a database case that there is something that can be improved. So if your data set on autistic students' understanding of their own success does what we would expect it to, funding will flow to increasing success once we understand the problem.

SPEAKER_06 29:38

We hope so. We're building that foundation and it's a shared effort. So Dr. Brad Cox and I are uh spearheading this effort with our wonderful team members, but this is a community effort. This is through the collaborations of our the program directors of these autism programs around the country. It's through disability cultural centers, disability service offices, faculty who are interested in this, and most importantly, our student colleagues, the ones who are sharing their stories and who are passing the word along, because we know at the end of the day that the best work happens when we're all in all cooperating and we're when we're all having a shared purpose. And and we feel like that what serves our community, being in the autism community, could actually have really valuable takeaways and ramifications for for other stakeholders. I mean, we're we're really in a fascinating time, Catherine, where we're seeing so many self-advocates' experiences have uh a larger stage. And so it's important that we leverage them those those opportunities to do good work.

SPEAKER_09 30:44

I I could not agree more, and I'm very excited to see universal design and other principles that benefit both neurodivergent students but all learners be better supported in higher ed. It was so good to talk to you, Brett, about your research. Thank you for coming on the podcast.

SPEAKER_05 31:03

Thanks for having me, Catherine.

SPEAKER_09 31:05

So that is our show for today. Thank you so much for listening, for following us on Instagram and Facebook, and thank you especially for adding your reviews on Apple Podcast. Our show is very specifically for students on the spectrum navigating college, and we appreciate your appreciation for Autism Goes to College. Now, as promised from the top, here are the ways to see the film. The documentary film Autism Goes to College is currently available through many channels, but the easiest way to see it today is to rent it on Vimeo On Demand, which you can access from your Apple TV or most other smart TVs by going to the Vimeo On Demand app. You can find a link on our website at www.autismgoes to college.org. The film is also available for educational use and for live and hybrid screening events. All the relevant info and links can be found on our website. Don't forget, please follow us on Instagram to stay current and consider joining our vibrant community on Facebook. Thank you for listening.

SPEAKER_03 32:21

Hey, thanks for listening to Autism Goes to College. We'd love to hear from you about what you'd like to hear more about. You can find us on Instagram and Twitter at Autism Goes to College. Hit us up with your thoughts. Tell us what's going on in your campus and in your college life. To see the documentary film or set up a screening, check us out at our website at AutismGoesTocollege.org.