Lee Burdette Williams
Colleges are only obligated legally to provide access, not success, right. And so think about the students and the parents of those students who are coming out of that environment where everything has been about how to help my child, or how to help me be successful. And now I’m on a college campus. And you’re saying that all you really have to do for me is provide me the kind of fair and equitable access to these opportunities, and then I’m on my own. And so you know, that that idea of of the cliff is really just crucial. And so we see a lot of students crash and burn in their first year, because they are so unprepared for it.

Heather Shea
Hello and welcome to Student Affairs NOW the online learning community for Student Affairs educators. I’m your host Heather Shea. Today we are discussing how we can better meet the needs of autistic and neurodivergent students on college campuses. I am joined by several scholars and practitioners and the executive director of the college Autism Network. Before I introduce my guests, today, I’m going to share a little bit more about our podcast and today’s sponsors. Student Affairs NOW is a premier podcast and learning community for 1000s of us who work in alongside or adjacent to the field of higher education and student affairs. We hope you find these conversations make a contribution to the field and are restorative to our profession. We release new episodes every week on Wednesdays, and you can find us at studentaffairsnow.com on YouTube, or anywhere you listen to podcasts. Today’s episode is sponsored by Symplicity. A true partner Symplicity supports all aspects of student life with technology platforms that empower institutions to make data driven decisions. And this episode is also sponsored by Vector Solutions formerly EverFi, the trusted partner for 2000 Plus colleges and universities. Vector Solutions is a standard of care for student safety while being an inclusion host. Stay tuned to the end of the podcast for more information about the sponsors. So as I mentioned, I’m your host, Heather Shea joining from the ancestral homelands of the three fires confederacy of Ojibwe, Ottawa, and Potawatomi peoples, otherwise known as East Lansing, Michigan, and home to the campus of Michigan State University where I work. This university resides on land seated in the 1819 Treaty of Saginaw and as a land grant institution, we feel like we have an even deeper responsibility to complicate and explore the relationship between our institution and the land. I am so excited about this episode today and so grateful for the four folks who have joined me to talk a little bit more and share their knowledge about autistic and neurodivergent students. And so I’m going to have each of you kind of share a little bit about yourselves and how your work intersects with this topic. And I’m going to start with John, welcome, John.

John Caldora
Thank you, Heather. Hi, everyone. My name is John Caldora. I use he him pronouns. I am a disability accommodations consultant with the Disability Resource Center at the University of Kentucky, here in Lexington, Kentucky. So, being a DRC consultant involves wearing many hats, but the hats that most relate to this episode are I coordinate our neurodiversity outreach efforts called the neurodiverse educational and social initiative or NESSE like the Loch Ness Monster. That’s our mascot blog. I love it. And I also am the primary accommodations consultant for our autistic college students. And last but definitely not least, I myself am autistic. So that’s kind of what brought me into this space today.

Heather Shea
Thank you so much for being here. John. I’m so grateful for your time. Lee, I should have started with you because you were the one who invited all of these folks. So thank you so much for bringing us together.

Lee Burdette Williams
It is my pleasure. These are wonderful people that I love being with. So my name is Lee Burdette Williams and I am I use she her pronouns. And I am a longtime student affairs professional, kind of grew up in the traditional sense of student activities to a Dean of Students role to Vice President’s role, and then kind of took a sideways move. That landed me here as the director of the College Autism Network, which is a nonprofit organization that supports training, research and advocacy efforts focused on the experiences of autistic and other neurodivergent college students. We help connect campus based and independent programs with one another. We help colleges and universities build their internal capacity for supporting autistic students through professional development. And we have a strong research focus that you’ll hear about a bit today. And my three co panelists, Emily, John, and Brett are all active members of CAN as we call the college Autism Network.

Heather Shea
And we’re going to post the link to your website in our show notes today so we can make sure folks can access that and and look at all of the amazing resources that you all provide. And thank you so much for being here for bringing together this group. Brett, welcome to the podcast.

Brett Ranon Nachman
Thank you, Heather. Glad to be here. Glad to be with my colleagues and friends as well. It’s nice to see everybody. My name is Brett Ranon Nachman I am. He him, his pronouns. I’m an assistant professor of adult and lifelong learning at the University of Arkansas. And I’m also director of research for the College Autism Network. So I’ve been part of the CAN leadership team for almost six years now. It’s been a journey. It’s hard to believe and all of us were recently in Nashville for our college autism summits. It’s great, great to reconnect, and I am an autistic self advocate. Much of my research focuses on autism and higher education, as well as disability more broadly. And it’s really important to be able to shed light on the experiences of autistic college students and other stakeholders on campus who can help elevate and honor the experiences of autistic college students. So pleasure to be here today.

Heather Shea
Thanks so much, Brett. It’s great to have you here as well. Yes, you all were together. So this is like a part two to your time together last week. Emily, welcome.

Emily Raclaw
Hi. I’m Emily Raclaw, she her hers. I’m the director of on Your Marq at Marquette University in the very cold. Wisconsin right now, our program serves autistic and all forms of neurodivergent students who are enrolled at Marquette University. I’m also a licensed professional counselor and a Certified Rehabilitation Counselor as a week ago, and a former special education teacher and a vocational rehabilitation counselor. I’m also an ADHDer.

Heather Shea
awesome. So grateful for all of you bringing your experiences and wisdom and perspectives. So just a few months ago, I hosted a broader conversation about reframing disability. And so this episode kind of builds upon that topic, we’ll link it in the show notes as well. But we’re really looking at specifically delving into the research, training and advocacy for students on the autism spectrum and other neurodivergent college students. So I think we should probably start where we often start with some definitions, what is the language that we’re using how and we know that that’s always evolving? So Lee, can you define autism? Why is it a spectrum? And what does neuro divergent mean? And what’s included in that umbrella term as well?

Lee Burdette Williams
Sure. Yeah, that’s a whole podcast in itself. Let me give you the kind of the short version of one way to define autism is that it’s a constellation of characteristics that are hardwired and brain based, that influence social, cognitive and communication behaviors through particular ways. And, you know, we can talk about some what some of those specific characteristics are. But I think those will come up through our conversation. And it’s considered a spectrum because people demonstrate these characteristics in in varying degrees. The term neuro divergent refers to an individual whose cognitive learning and social characteristics diverge from the majority of people who are sometimes referred to as neurotypical. And so when we say that a community or organization is neurodiverse, or that neurodiversity is a value within that organization, what it means is that all sorts of learning and thinking approaches are represented, including those of neurodivergent and neurotypical people. Autism is one type of neurodivergence, but there are others. You know, Emily mentioned, ADHD. There are sort of varying degrees of varying definitions of neurodivergent, but it’s really anybody who sort of diverges from what is considered kind of typical. I hope that sort of is a good Cliff’s Notes version people often say, people often confused neurodiverse in neurodivergent and say a person is neuro diverse, but the way that we try to distinguish it is that communities or environments where neurodiverse people are neurodivergent.

Heather Shea
Gotcha, gotcha, that makes more sense. So I’m really in recognizing that often, you know, this is a hidden, this is hidden, right? We don’t necessarily know until a student discloses or shares their, their status as a student on the autism spectrum or a neurodivergent. So when we think about diff Finding, you know, part of the complexity, I think, is the fact that it’s not. It’s not always evident when we engage. And we’re going to unpack this in a lot of different ways today. But if you from your perspective, you know, how do we better adjust our understanding so that we can be more inclusive? When we talk about students with disabilities? Is it a disability? Is? Is it included in that? And how should we be thinking about that in terms of inclusion? Yeah, that’s

Lee Burdette Williams
such a great question. It’s such an important issue that’s being talked about a lot. Disability versus identity. What that means. So one thing that I whether I can think about it is, there are plenty of people who would if, if tested, right, like if evaluated would meet the definition, the clinical definition or diagnosis of autism. And they live and they learn, and they work, and they have families, and they function in really positive ways every day. And so that, so that’s not a disability, right? It’s just a difference. Where I think it crosses the line into disability is when the characteristics of autism are an impediment to someone being able to pursue their dreams, their goals, or are disruptive to others who are trying to pursue their dreams or their goals. So on a college campus, we have plenty of students who would meet the definition of autism, and they don’t get accommodations, or they have minimal accommodations, and they do find, and maybe they’re quirky, maybe people know that something is unusual about them. But it’s not a disabling set of characteristics. But if that student is unable to achieve what they are trying to achieve, because of those characteristics, then it melt moves into the realm of disability. And then I think our focus really shifts to figuring out how to accommodate that student to help them be successful. I think you know what the principles design for learning are a really good place to start when we talk about this, if we can design a learning experiences that reflect an assumption that everyone in the classroom or residence hall is neurotypical, then you’re going to leave a lot of students behind, not just your autistic students. But if you adjust the environment, to meet the needs of those students who have formal diagnoses of autism, you’re actually going to improve the experience of everyone in the class, because you’re creating the most universally supportive environment.

Heather Shea
That’s really powerful. I work in DEI spaces, and we often talk about centering the needs of our most marginalized students. And that then benefits everyone. That so that that really resonates for me. Emily, I’m going to turn to you because I am really curious about if there’s any data on how many students we’re talking about on our college and university campuses, how has that population grown and changed over time, as campuses have frankly, addressed, you know, services maybe more effectively? And then a little bit about their identities and how intersectionality also plays into some of their college experiences.

Emily Raclaw
Yeah, so likely said, there’s so many people on college campuses that either aren’t registered with the office of disability services, or they haven’t been tested, that would qualify. So I feel like numbers are grossly underrepresented. So I’m not a researcher. And I say that a lot. So the number is actually quite difficult to quantify. So when I started my program, the researchers who gave me the data set, it was about one in every for every 100 college students entering college was likely on the spectrum. And I don’t really again, I’ll take corrections on that. And that was in 2019. Now, as we know, years have gone by and autism rates have increased based on diagnostic criteria and access to diagnoses. So I anticipate those numbers are actually going to start growing over time, not just because of these programs, but because we are people who exist, and are turning 18 and are qualified and are able to do college. So I guess that’s a non answer, but that’s the answer to the question to that part of the question. And in terms of intersectionality, I can speak for my program specifically. Right now we’re hovering in about 30% of our population that also identifies as LGBTQ+, and I suspect that similar to other programs around the nation. And because of that actually built in additional layers of support additional communities to belong to. And just kind of additional people who are who get it that maybe are excluded from populations are excluded from activities are excluded from places and from what I’ve seen from students as not being a member of those communities as that it actually creates a bigger network and a bigger core of belonging that wouldn’t maybe otherwise exist. And I think we’re also seeing a shift. Brett is leading a research project called Project pieces that I’m sure he’ll talk about later that I am blessed enough to be part of, where it’s really trying to identify people who are marginalized in the Autistic community in terms of identities, whether that’s LGBTQ+, race, ethnicity, income background, and we’re hoping to kind of get a better idea of what it really looks like out there.

Heather Shea
That’s, that’s fascinating. I also have the opportunity to work in our LGBT services office on campus in the gender and sexuality Campus Center. And so I’m now thinking about, like, how that space really is a as a space that maybe we should be spending a little bit more time considering the neuro? Absolutely.

Heather Shea
I love it. Yeah. Thank you, you brought that for me. So John, we talked a bit about accommodations, and I am really interested in academic challenges, and opportunities, right, that we see with autistic neurodivergent students. Can you talk a little bit about what some of the biggest challenges are? And then what are some of the accommodations that either you provide or your campus or that generally are available for students to promote their success?

John Caldora
Sure, so something I’ll just expand upon that Lee and Emily briefly touched on is, first of all, it is difficult in parts of the United States to get a diagnosis of autism. And we especially also see that there is a link where historically disenfranchised groups, just because of access to health care issues, also are experiencing that even more. So sometimes, when students come to us, they will not have documentation of an autism diagnosis. Instead, they will have documentation of some other co occurring disability. For example, depression, anxiety, combined with autism are very common. So we can start by giving them accommodations for depression, anxiety, which also covers a lot of what autism affects as well. So the issues vary a lot from student to student, I would say typically, though, if we’re specifically looking at autism as a diagnosis, we see a lot of issues in the more social parts of a student’s academic experience. So group projects or being called on in class, or being able to present to a large group. And so you know, usually when I’m meeting with a student who, who has a diagnosis of autism, I will, you know, go through those areas with them. Have you had any issues presenting in front of the group? If you’re called on in class, does that produce a fight or flight response? As well as you know, also addressing things like, Okay, what happens if a student gets overstimulated, because a lot of how autism impacts students is how they perceive the world around them. So if you know you’re sitting in a room, and you can hear the fluorescent lights buzzing, and the professor is shouting into a microphone, they don’t meet in the, in a relatively small lecture hall and, you know, you have all of these different sensory inputs pushing on you. Sometimes you need to be able to leave the classroom and make up any work that you missed. While you know you take a minute and center yourself. So that’s another accommodation that we see as well. I do think you know that autism does have strengths a lot of our students do come in, you know, having done fairly well in high school or very well in high school. But then, you know, you do run into that, what I’ll call the high school to college clipped, you know, there’s a big gap in expectations. And so, you know, students who might have developed all of these coping skills and resiliency skills, which are great in high school, they run into additional challenges here. So, you know, we refer them to, we have integrated success coaches on our campus who serve as academic coaches as well who can help them develop those skills. Another example is if they’re registered with the Kentucky Office of Vocational Rehab, we have a partnership with them to provide that. And then another resource that students may want to consider or going to a college or university with a dedicated autism support program, whether it’s a smaller one, like here at UK that covers a few specific areas, or it’s a more comprehensive program like On your Marq at Marquette.

Heather Shea
I would other folks add to what John shared. Thank you.

Emily Raclaw
Yeah. When John mentioned that clip, like that was like, yes, that’s exactly a lot of what we see, especially that first year of, oh, well, when I did this in high school. I’m like, yeah, so about that. That’s not gonna work here. And just being. Well, I had these coping skills, I’m like, okay, but to new environment, new challenges you’re facing, like John was saying, it’s the classroom environments themselves. And at universities, it’s just very different than how they were in high school. So these coping mechanisms that worked well, when they were with these groups of people, theoretically, that they’ve known for a very long time to now this giant group of people, they might not work.

Lee Burdette Williams
It’s also, there’s a profound shift in philosophy, because of the federal legislation that governs what’s expected, and the obligations of high schools and the obligations of college, right. And so in high school, the focus, you know, coming out of the is really about success, what do we have to do to help the student be successful, and so high schools will go to tremendous lengths to help students be successful. Colleges are only obligated legally to provide access, not success, right. And so think about the students and the parents of those students who are coming out of that environment where everything has been about how to help my child, or how to help me be successful. And now I’m on a college campus. And you’re saying that all you really have to do for me is provide me the kind of fair and equitable access to these opportunities, and then I’m on my own. And so you know, that that idea of of the cliff is really just crucial. And so we see a lot of students crash and burn in their first year, because they are so unprepared for it. And, and we’re not they need a different runway, than we have provided. But we have over promised too many of them a level of support that we are not going to provide. And that’s a, that’s an Admissions and Enrollment issue that could talk about and another time. But yeah, I mean, it’s just really heartbreaking. And you know, and as both Emily and John have said, students who would meet the clinical criteria for autism, if they’ve gotten to college, like good on them, they have overcome a lot of challenges. And they deserve our, our support and our kudos because the world was not made for these students, and they have figured out what they’ve had to figure out to get this far.

Brett Ranon Nachman
And to kind of piggyback off of those points, too, I think, and we can continue to, I think, explore and interrogate the issue of so many folks who are, who hold a lot of power and who are neurotypical wielding, they’re not necessarily wielding their influence to support autistic noted, divergent folks. So from the standpoint of a lot of the onus, as I think my colleagues have been alluding to, is put on the student to navigate these structures, as Lee said, we’re not built for them. And consequently, I think it reinforces this paradigm, this messaging, that of, of problem or challenge, when instead, we really need to lean more into the strengths and opportunities. It sounds very foundational, and trite, even, but the use of language, I think, really makes a big difference. So when we’re talking about, you know, academic challenges, I think a lot of it is not necessarily by virtue of the student who often is very capable and adept. And in a certain area of expertise. That’s something we know in the autism community, there’s strong hyper interests and areas in which folks really excelled. But if the classes themselves are not designed in a manner, to showcase that, and to lean into variations and assignments, where folks can channel that passion and knowledge in unique ways, then then the student is compromised. And so that’s an imaginable shift into some of those practical solutions. But I my real thinking is, you know, to Lee’s point, you know, if folks, you know, make it to to like anybody, not just autistic student, but any students if you help, if you meet the threshold to get into college, there’s an opportunity and it’s consequently, our opportunity as faculty, staff, practitioners, researchers to really figure out all the different channels to leverage those strengths and possibilities as much as we can.

Heather Shea
I could not agree more. I feel like it’s an opportunity, but it’s our responsibility. We’ve admitted the student and said they can get in here. Do we not have a responsibility to address the structural, you know, obstacles for their success at our institutional level? Right? Yeah,

John Caldora
yeah, I think to build off of that Heather and like Brett said, is also a, you know, a lot of these structural issues are large, but a lot of them are also, you know, relatively smaller things that we can address. I regularly give a presentation to our staff and faculty about supporting neurodivergent students here at UK and, and I tell them throughout the presentation, the advice I’m giving you doesn’t just apply to our neurodivergent students, it applies to all of our students, things such as giving context about, and background about what we are teaching and about our policies and procedures, all the way to just communicating information through multiple methods and media. So a lot of it is stuff, you know, that would benefit all of our students, not just our autistic or neurodivergent students.

Heather Shea
Thank you so much. So let’s move into emotional and social needs and support so that campuses can also provide in the in that regard. Lee, do you want to kick us off in that? In that part?

Lee Burdette Williams
Yeah, um, you know, the social and emotional needs that neuro, divergent or autistic students bring are really similar to the needs that neurotypical students bring to campus. They want to be respected and understood, and acknowledged for the contributions that they can make to the community. Our students want to feel a sense of belonging. And so always, she forced us to ask what are we doing to help students, especially those who’ve been marginalized feel like they belong and matter to our communities. Most autistic students want to make friends, you know, they want to be successful, and they want to be able to pursue their passions, how they go about seeking those things may look different from neurotypical approaches. And that’s where a better understanding of common autistic characteristics is key. You know, if someone in your community speaks a language different than the majority, you don’t blame and ostracize them, right, you really do two things, you learn to speak their language. And you encourage them to become more proficient in the majority language, and somewhere in between communication improves. And the community itself becomes more supportive of all types of diversity. I often make the distinction between what I call large a accommodations and small a commendations. And the large a accommodations are like this sort of, you know, extended time on tests and distraction free environment. And those are those are combinations that a disability services office can put in place. But the small a accommodations are really about creating environments, where the broadest group of people can succeed and feel that sense of belonging. So, you know, let’s talk about orientation activities for for a moment. Because I think orientation is like, it’s hell week, for a lot of students who have sensory sensitivity. And I, you know, I look back on my own career as being someone who was responsible for orientation programs. And really, I just, I just want to cry because I feel like I was so insensitive, you know, to ask students who have sensory sensitivity to be in loud places, boisterous places, play fair, it’s a great thing, unless you have a sensitivity to noise or bright lights, the human knot really bad idea for anybody who does not feel comfortable being touched. But we do these things all the time. And again, we’re trying to meet the needs of the majority, the neurotypical and all these neurodivergent students are standing on the sidelines saying, Oh, my God, like, what am I doing here? I’ve got to get out of here. This place is crazy. So, you know, how do we create environments that are supportive? You know, how do we create quiet spaces? How do we create smaller social opportunities so that these students have have that runway, right, where they can really take their time getting comfortable in the ways that maybe in high school they took for granted?

Heather Shea
Thank goodness COVID ended the human knot at least on my campus

Emily Raclaw
right Hey, goodbye. Humans get rid of awkward. You know those icebreakers that are awkward for everyone that no one likes? Yeah, no,

Heather Shea
exactly neighbor, right? Like, yeah,

John Caldora
I always suggest do the name action alliteration one, I’m Jedi John. Simple, you’ll learn my name, and it’s something everyone can be comfortable with.

Emily Raclaw
I never remember that forever. Now, John.

Brett Ranon Nachman
Call you not the rest of the podcast?

Heather Shea
I love it. I love it. Well, why would other folks add about this social and emotional kind of the connectivity and the ability to find places and spaces of belonging? Like I really liked that component that you add idli?

Emily Raclaw
Well, something I did in developing my program. First is I included mental health support for my students, which I think is a huge piece because as we were saying, navigating those social landscapes, navigating those really awkward, everybody meet everybody how college that first two weeks is like summer camp and just kind of having those supports built in. And then something else I did really was really important is that I wanted my program to be part of the campus. So it wasn’t just on the second floor of Coughlin hall here at Marquette, where we live, being fully integrated into campus by meeting with the President meeting with Provost meeting with VPs. Meeting with all the departments that we’re going to have high touch with my students, so tutoring Writing Center, obviously housing, even our police department just in case because apparently like to do fire drills in the middle of the night and not tell me ahead of time, so I can let my students know, to remember to check to check the stairwells, because my students might be hiding there. But just so everyone’s aware of what can we do to make things more inclusive? What can we do to make it more welcoming? What are we whatever you what’s our real goal? Like Lee said about the foreign language, I’m thinking about international students or students who don’t come from typical American culture, right? And how that’s also a change in the universities do a really good job of addressing that. So we should be considering what are we doing to level the playing field overall?

Heather Shea
Yeah, I’m thinking about Google Translate, and all the language like that that idea of translation is so powerful, and your your point that you just made Emily about what we do for international students, absolutely spot on.

John Caldora
And that’s sort of when we built the program here at UK, what we were addressing as well was, we had a lot of supports already, we wanted to address specifically that sense of belonging. And so when we built Nesse, that is what we were programming to we we decided to go with a model that does not charge students additional fees, because we wanted to make the barriers access as low as possible. We also don’t require a diagnosis to participate, as well, what what we specifically program to is basically, a survival skills guide for surviving a neurotypical college campus. Excuse me, while also, you know, providing that space where students can hang out with one another and belong with one another, and not have to worry about, you know, masking their autism or masking their neurodivergence, but give them a space where they can decompress and be themselves. And so that’s kind of what that that is where we decided to start here at UK with building that.

Brett Ranon Nachman
Also mentioned to in terms of relating to the social needs, I think, recognizing that, and this was talked about earlier in terms of folks wanting community and friends. And that may work in different ways among folks in the Autistic community. I think really leaning into extracurriculars and campus organizations and other spaces can be really viable from the standpoint of providing a structure, often more deliberate way of engaging with peers who share the same passions, right? Like really focusing on the strengths and how to leverage them. Well, you know, if I love filmmaking, and can participate in the filmmaking club, and meet other people who share the same interest as me, as an autistic person, okay, there’s a conversation piece, right? Likely, we’re going to find some points of connection and maybe there would be divergence in terms of what ultimately is the best Disney movie of all time. Clearly, I may have my own opinions as the person the top five and my top five for me, but at the person with all the Disney stuff in the background, but ultimately, those extracurriculars are so vital in terms of creating those outlets for finding friends for me, I, you know, started community college, it was all the extracurriculars that I wouldn’t have ever anticipated being so prominent in my in my education that ultimately served as the mechanism for making friends based on loving the environment or, or the news or student leadership or other things. So mind you, we have to recognize that Not everybody in the autism community feels comfortable in certain social situations and, and certain spaces may be sensory overload or intimidating or have certain nuances that are hard to make sense of. But I think we need to continue to think of how we also re envision those outlets to create points of connection collaboration community. And it’s hard to make friends in general, it’s certainly harder to make friends as you get older. But those campus organizations and events can be viable avenues. And it doesn’t require as much initiative on the student, especially if there’s structured things unfolding in those spaces.

Emily Raclaw
I want to talk one more time. So like, as Brett was saying, I think one of our crucial partnerships was with student life. Those student organizations have been awesome. We have an event every most Wednesdays with Thursday, Friday, Saturday nights, called late my late night Marquette that has activities for students do from like 9pm to like, way past my bedtime. And what we did like partnering with them and saying, Okay, how are you advertising? They’re like, Oh, it’s trivia. Okay, but what’s the topic what’s to be expected and kind of making sure that all those avenues especially like, those, those communities that are supposed to be communities on campuses are also accessible?

Heather Shea
I love the student involvement push that’s, that is my kind of an engaged, engaged college students and their connections are the ways that we can find those places of belonging. And that thank you for that. I think the social and emotional pieces really is really key. I am really curious about the the research and all of the recent studies. And Emily, you kind of alluded to a project you’re working on with Brett, Brett, can you provide some overview and then anything that we can reference in our links today will which will be useful tools for our college and university partners to use to inform their work?

Brett Ranon Nachman
Absolutely, well, modern line, the research is emergent, it’s minimal. So when I started grad school, seven years ago, you know, there were only a handful of journal articles that really focused on autistic college students or autism in higher education. And that’s really a reflection of well, you know, until the past decade, we weren’t seeing, we weren’t recognizing the prominence of autistic college students on our campuses, by virtue at the time not as many programs existing and certainly, the autism support programs that that John and Emily were referring to. We’re seeing many more of them now. And so consequently, there’s a more visible presence on our campus campuses, for call for autistic college students. But what the research had told us at the time, is, well, if you were looking at any studies from 10 years ago, or so you wouldn’t see many participants being autistic college students. So it’d be a lot of communicating about, right. So parents perspectives, maybe staff or faculty perspective as admins, but administrative perspectives, focused in on the high school high schoolers intending to go to college and those transitions and all of that having value of no doubt. And we need to have a holistic picture of these various perspectives. But without the autistic, called student perspective, being elevated in the research, it really inhibits our full understanding of the we’re talking about the academic, emotional, social challenges and opportunities. Well, who better to learn about it than from the autistic college students themselves. And gradually, we’re seeing more of that we’re seeing more of a focus on not just the academic part that gets a lot of attention, and the accommodations and relationships with Disability Services, we need to attend to that, of course, but it’s also, as I mentioned, more of that holistic, right, how are how are students making friends on college campuses? In what ways? Are they able to find majors that capitalize on their interest? What are their employment pathways? What, in what ways are their college experiences setting them up for that, or gradually, we’re seeing more research that is more holistic in nature, but another challenge to and, and this was discussed briefly earlier, but we’re not really always attending to the intersectionality of autistic called students, folks who identify as women and non binary people of color, international students, low income students, LGBTQ plus, and we know there’s a lot of, as Emily talked about earlier with their program that that provenance of autistic LGBTQ folks and so that’s been that’s been unfortunate that a lot of the research has not been able to unveil that and that’s not always by virtue of the researcher not trying but in terms of trying to gather those perspectives but certain structures and and experiences eliminate those those opportunities from unfolding. And so the kind of the space that I’ve captured in here’s over recent years with my work, it’s been one to outline what research does exist, what’s the landscape, but but also to produce empirical work that really elevates autistic college students perspectives, my dissertation was on that, and I’m starting to produce some journal articles related to that, that are intended to serve a variety of different stakeholders. And so really excited and proud of that, but also making it much larger scale. So Emily referred to project pieces, which is an acronym that stands for post secondary education, artistic college students experiences of success, because we see, like all of us are connected to artistic college students in a variety of ways. But how do they define success? Right? As higher education folks, we might view success in traditional ways, right? Are you? Are you graduating in a quote unquote, reasonable amount of time? Are you getting good grades? But it’s We know, for all students, it’s a lot more than that, right?

Brett Ranon Nachman
It’s, are you able to make friends? Are you taking care of your wellness and mental health? Are you participating in activities? Are you feeling a sense of pride in yourself in your identities in your intersectional? identities? Outside of and in concert with autism? Are you finding a job? Or are you connecting with folks? So what we’ve designed is a survey that is kind of a nationwide surveys for undergraduate artistic called students eventually retire, we’d like to expand it. And it’s really vast and trying to really enable them to define what is success for you? What factors contribute to success? In what ways could colleges be redesigned in ways that really favor the different skills and opportunities that you bring to the table, and we’re really hoping to continue to gather more insights on that. And this will be a longitudinal survey where we’ll follow students over the years as well. But all that to say, with the research, the landscape is expanding, thankfully, there are more folks in the space, there are more autistic researchers in the space, not as many that I’ve seen quite quite in the United States, just among the circles that I occupy a lot of folks overseas as well, who are producing great work and, and I am seeing in just the past year or two a lot more folks who are autistic scholars, not all of them are from higher ed programs or backgrounds like me, but from other fields that who are lending really valuable insights into what autism looks like across different disciplines, across other identities. And, most importantly, really recognizing that we have an important this is an important time for us to use our platforms in our spaces for good and to work in concert with our neurotypical colleagues to produce work that is holistic, that is strengths based in nature, that changes the paradigm and ultimately is pragmatic, right, I could produce a lot of different research studies, but if it wasn’t aimed to actually be implemented, if we’re not talking with our communicating with our practitioner colleagues, then it’s all for naught. Right? It’s we’re just talking in silos, a lot of the work that I’ve seen and and that I’ve engaged with, it’s not always in high red circles, right? It’s autistic folks. And autistic scholarship being produced for autism journals, disability journals, other disciplines as well, that all has merit. I’ve contributed to those spaces as well, what we need to do more of is publishing and higher ed and Student Affairs journals. And that’s where, from a disciplinary standpoint, that’s where I’m biased, and I want to be, and I am in those spaces, where we really need to be communicating with the practitioners at our colleges and universities, so they know what tools they can implement. Because otherwise, we’re, you know, we’re talking in circles, we need to be communicating across different spaces. And that’s what I really valued with what Emily was talking about a few minutes ago in terms of their program, working with student life and really making sure that these are collaborative relationships. Change doesn’t happen in a silo. It happens across a network. So and all of this research extends to cause autism network and we produce monthly webinars, where we have presenters talking about their research. We have a listserv, where we’ve, over the past five years, we’ve dealt with more than 600 people on our called Autism Network virtual Association scholars listserv, which I’ve done, very proud of, and it allows folks to share word about their research studies, get participants get insights, share scholarship, it’s a burgeoning space. It’s a space that totally thrills me and more importantly, where we collectively are the pioneers. We are going to change the conversation about autism and higher education. So Let’s do the good work. Yes, there’s the chair from.

Lee Burdette Williams
Like, when we started the college autism Summit, this was our sixth one. You know, one of the key goals was giving space for practitioners and researchers to talk to one another, and really influence each other’s work, because that wasn’t happening. But here’s the thing, I think this is really important to understand kind of contextually why we’re so excited about Project pieces. And it’s because, as Brett said that the the research has been kind of piecemeal, as, as the Autism Awareness movement has really caught on, there’s a lot more interest among graduate students in doing their research project, or a thesis or dissertation around an autistic population. So what happens is about once a week, I get a request, someone has found me through Can I get a request from someone who says, I’m a master student, or I’m a doctoral student, and I’m doing my dissertation on autistic students success in college. And I wonder if I need to interview autistic students? Can you send out this invitation to participate in my survey, or do one of my interviews? Now, I could put this invitation on the listserv. And then Emily and John and about 140 Other people will get this invitation another, another researcher, wants to interview my autistic students. And now it’s added to my workload, because I’ve got to recruit them. And honestly, they don’t want to do it. Because they’ve got other things that they’re sick of talking about being autistic. And, you know, I mean, these requests are, you know, they’re sincere, they’re important, but they are, it’s a flood. And so, you know, what I tell these researchers is, well, if you can incentivize it with like a gift card or payment, you might be able to get this get a critical mass. But the problem is until they get a critical mass, you can’t get this research funded, and isn’t big enough, the sample size is big enough. So project pieces is really about trying to create a critical mass as a database, something like an iPads or like the leadership study database, where you have 1000s of people already in the database, and then those researchers can tap that database to get a lot of really useful information and not go through this. I’m a researcher, I need people to interview Could you ask the program directors so they could ask their students? Because that gets old? As you know, Emily? And John, I’m sure can tell you. Stop asking me lately. So I don’t I don’t send them on anymore. I feel bad. Yeah.

Brett Ranon Nachman
Yeah. Although I’ll just add to because I appreciate you mentioning, at least in terms of what the hopes are of project pieces, we want to create something that is broadly accessible so that folks can can glean on these insights so that we’re able to track some students from year to year. So we know what their pathways are. That’s a big challenge in the community college world that I’m also engaged with is we don’t always know students pathways from community college and thereafter. So this will hopefully illuminate those trajectories as well. And I’ll and I’ll continue to say like, I mean, I’m, I’m one of those researchers to where I am tapping people and asking for, like, Can you can you participate spread the word we there’s value in that there’s, there’s merit, particularly based on the the nuances of particular inquiries that cannot necessarily always be addressed in broad context. But that is the goal with Project pieces, because it is very encompassing a variety of different domains, that it will enable a lot of researchers to be able to tap into that, but it’s going to take time and building that infrastructure. So we’re at the the nascent said that we’ve gotten national funding, we are offering $25 gift cards to eligible participants. And we’re very, we’re very excited. I’m also really proud that it’s a team consisting of researchers, practitioners, and self advocates. So it’s been very much where we’re relying on each other’s strengths and unique perspectives across different disciplines to sell. That’s the promotional piece, that all all conclude at this juncture. But we feel that the research landscape is changing. It’s happening very rapidly. And ultimately, it just comes down to getting in the hands of folks who need and should check out this work because until you have that exposure, there’s never going to be acceptance. So we need to we need to lean into that more.

Heather Shea
Yeah, I absolutely agree. And I’m so grateful for you sharing that overview because I think this is the piece, right? Like we need to be able to give no pun intended. This is the piece that we need to be able to give practitioners and faculty and graduate students and improving their kind of under broad understanding. I want to turn before we get to that question about what advice we would give, I do want to ask a bit about self advocacy, because we’ve mentioned that a couple of times, and I think about college students in general, right, like understanding leaving home missing supportive parents and guardians, and then maybe being at greater risk of being intentionally harmed. So how can we promote that self advocacy and help seeking behaviors among our autistic and neurodivergent students? John, I’m gonna have you kick us off on that one.

John Caldora
Sure. So first of all, recommendation for the audience, to review the journal article test at Al’s framework of self advocacy for students with disabilities. Very good overview of sort of this laddered level of how do you become a self advocate through college, because college is really that last big safety net where you have, where you have people like student affairs professionals who are there to look out for you and support you. Now, we can build out that safety net a bit more with neurodiversity friendly employers can really does a lot of good work with that. But ultimately, you it’s important, you know, to explain to students, and sometimes also, you have to explain to their parents that you are at the end of that point where you know, where you will have these supports. And so you need to be able to advocate for yourself in your field, with your employers in your daily life. And so that’s why, you know, I push that, but I think also, you know, there is, there is also a need to develop help seeking behavior. I am an autistic person who went through college, and now runs an autism support program. And so there are more and more of us, and one of the areas that we’re realizing, you know, we have to take another look at is how we is how we educate about developing interpersonal relationships, and interpersonal romantic relationships. Because we have to move from we’ve moved over the past couple of years from like a compliance model, like a don’t do this to not commit a Title IX violation, to more of a bystander intervention model. But you know, as the emerging research is showing, we need to move past that towards also a more affirming model, because we have a lot of survivors of sexual misconduct and sexual violence, who are autistic or members to the autism spectrum, particularly among historically marginalized identities, which we also need to work into that as well. So I think that, you know, the is what keeps me up at night, it’s that the other thing that keeps me up at night is those co occurring disabilities, a lot of which are mental health based. So we do have, you know, students who may have more may have used up a lot more resiliency skills, and a lot more of that resiliency bandwidth than other students who may find themselves in crisis more. And that’s where it’s important, you know, not just to build that community of students, but also build supports. For those students. Our autism support program didn’t actually start in our Disability Resource Center, it started in our case management office, because we were noticing that we had students that we were seeing quite a few of our autistic students who were coming in and, you know, experiencing mental health crises that we then do postvention for and try to support them, but they were missing that sense of belonging. And so that’s kind of where that started. And when I moved over into disability services that kind of brought over with me, because, you know, we have funding that we can actually devote to, to students with disabilities that’s earmarked for that. But you know, that’s one of the reasons why we started this program. But I think overall, you know, just keeping an extra eye on the students is really, if I can give you, you know, one, one thing you can do to promote this today is just check in more with these students, and check in with how they’re doing.

Heather Shea
That’s really powerful. Brett, what would you add?

Brett Ranon Nachman
Yeah, I would offer lots of snaps to what John said. And I think it’s an iterative process, self advocacy. If you’re looking at it from the student lens, it does not necessarily happen overnight. And I think that requires practitioners across all different parts of Campus to recognize that folks entry points in terms of embracing not only embracing their autism identity and experience, but also being able to find ways to attain the needs that that they have attained the supports that they need to be successful. It, it takes time. I know for myself, it did too. And I think everybody’s journey is different. I kind of laughed, I chuckled a little bit when John mentioned the test at all article, because I use that as the theoretical framework for a journal article that will be debuting very shortly, in the Journal of First Year Experience in students in transition, it’s on self advocacy, it’s a piece of my dissertation. So I feel very tethered to, to that, and really recognizing that there’s a lot of different stages that students go through. And consequently, there are a variety of different considerations that practitioners should have, including the notion of navigating those relationships with parents who are often very well intentioned, if assuming they’re involved in their children’s lives. But perhaps overstep boundaries or aren’t sure of, of in what ways they can engage or communicate. And unfortunately, that positions a lot more effort or work prior to student’s college years to be able to learn how to advocate for themselves by the time they get to college. Right. And this applies to not just autistic college students, but all I can think of first year students and how there’s a lot of uncertainty and not knowing how to navigate things. And it’s not necessarily about pointing blame, it’s more of create trying to figure out mechanisms, so that students feel more self assured about themselves, whatever identities they hold autism or not, but figuring out how to ask for help, knowing that it’s okay to ask for help when it comes down to is that self recognition, and being able to figure out the right mechanism to be able to get supports. collaborative problem solving is a tool that a lot of autism support programs utilize, and is incorporating other spaces, it’s all about figuring out how to navigate things with the student, it gives them a sense of agency in the process. I think certainly in terms of self advocacy, it comes down to students being aware of different avenues they can engage with, to, to learn about their autism identity, if they if they’re interested in that, right. So there’s the Autistic Self Advocacy Network, which is has very huge reach in our autism community. And being patient with oneself that you know what, for me, autism is salient. And because it defines me personally and a heck of a lot professionally, too. But that didn’t happen overnight. It wasn’t until the end of my community college experience that I was open about my autism and then actively explored that and then channeled into my research in grad school. For a lot of folks it you know, their trajectories may be vastly different depending on diagnoses and other identities and how stigmas may play a role. So, self advocacy is, is something that I think we need to elevate more broadly on our college campuses to support all of our students. And when it comes to autistic students who may have perhaps a need an additional layer of support, and in terms of like, you know, having a guide like from to know, like where certain places are on campus and or to have some provide an introduction, because maybe I feel anxious in new situations, but maybe figuring out phrases or tools that I can turn to that are a little bit more comfortable. It’s a whole wide assortment of different components that we need to be accounting for. So I realized I’m perhaps a bit verbose here, but I want to illustrate that the the onus falls on the student to advocate for themselves, but it shouldn’t be words just on them. It’s a whole different, it’s a whole network of different supports to be able to honor that experience.

Heather Shea
That was great. That was absolutely fabulous. And I consider this I mean, I do think that this is an example of something that that resonates. I have a 17 year old who is getting ready to go to college. And like as you were saying that I was like, Oh my gosh, am I building the skills that they need to be able to advocate for themselves? And I work in this field, right, like that’s the other part of this. So I would love to, to finish with advice and some resources or other kinds of things we should be kind of thinking about. And Lee, you mentioned there’s a isn’t Netflix or Amazon or show that we should all be watching it during as we were thinking about this, this conversation earlier. So tell us a little bit about advice to give to practitioners, faculty, grad students, etc.

Lee Burdette Williams
Yeah well, it’s so interesting that over the last few years, the number of sort of coded, or obviously autistic characters have emerged on TV, and they’ve kind of come from being supporting roles to being center. And so at the college autism summit last week, we our closing speaker was the creator, Jason Katims and the cast of the Amazon series as we see it. And just, it’s a really terrific show. It’s one season eight episodes, maybe there’ll be a second season, I don’t know. But a great bit of homework for anybody who wants to just kind of learn what some of the challenges are, that are faced by autistic young adults, watch these eight episodes, and you will learn a lot the actors themselves are autistic, and it was really just an honor to hear from them about how they kind of made sense of being autistic and playing someone who’s autistic and, and kind of reconciling those characteristics. But, you know, more broadly, my advice is, is you know, and I think what, what gives me some hope is just that, you know, student affairs, we have always led higher education in areas of diversity and inclusion, right. So from supporting women in higher ed, BIPOC students, LGBTQ students, have, it’s always been Student Affairs at the helm, leading our institutions in and we can do that with neuro diversity too. So I can’t stress enough the importance of outreach and training and education to create a truly autism friendly campus environment. You know, so one resource that that I like to pitch is our CAN consultants collective, you know, a group of people, these three are, are among them, who are available to work with campuses to help help do training for faculty, staff, and students, because it’s a vulnerable population, as Brett said, and we have to figure out how to meet autistic students more than halfway. And we do that through really understanding autism, what it looks like, what it is, what it isn’t, and what sorts of interactions are the most effective. So you can find more about the consultants collected on our website. I’ll stop there.

Heather Shea
I love it. I love it. We are out of time. And I so I’d love to hear in our final thoughts from each of you. Any other resources that you would want to share? And then any particular thoughts that you have for this episode? You know, our podcast is called Student Affairs NOW. So what are you thinking, pondering, questioning, excited about traveling now? And then if you would like to share how people can connect with you? That would be great, too. So Lee, I’ll have you kick us off for the final thoughts and, and, and then move on to the rest of you.

Lee Burdette Williams
Yeah, you know, I think a lot of campuses up to about 120, sort of formally designated autism support programs that are campus based. Sometimes they have good connections with Student Affairs, sometimes they’re very isolated from student affairs. Those are critical partnerships. So if you have a program like that on your campus, reach out to them and say, How can we partnered to really support all of our students really create a neuro diverse environment. And I think, if you don’t have one of those programs, that’s, that’s okay. You still have people who want to learn you have a lot of people with personal experience with autism. And start creating a training initiative on your campus. You know, do webinars, bring in a consultant, do a book group, do a TV watching group, you know, student affairs, we’re good at this. Like, we do this really well. And we just need to do it with the students in mind.

Heather Shea
Thank you so much, Lee. Brett, tell us a bit about what your final thoughts are, as you’re kind of thinking about this episode today.

Brett Ranon Nachman
Yeah, I think the thought that continues to resonate in my mind is the the notion of collaboration and where we are communicating with one another about these issues. I often say within my work that I feel very deep sense of responsibility to my community, to my work to be able to illuminate new perspectives to work with folks who have complementary areas of expertise so that the autistic college student experience is more prominent in our minds. But ultimately, this is everyone’s responsibility. It’s not just it’s not just those of us whose work is deeply connected to autism. And that’s why I really always appreciate like what Lisa said earlier and what all of us were communicating about is that the, the strategies that we we may employ that are useful for our autistic and our version called students are going to be effective, often for everybody. There’s going to be further nuances and things to attempt to do With the autism community, but if we look at it from a more holistic and Representative standpoint, I think that can be very helpful. I would say I want the takeaway to be that lightly. You know, student affairs practitioners are very adaptive and being just resourceful and, and in making connections and drawing on their, their tools and expertise to be able to provide good experiences for for students. And I think we need to lean into that further in, in thinking across campus spaces, working with autism programs, should they exist, if they don’t exist, working with Disability Service Offices, but also meeting events and opportunities for autistic students to be elevated more saliently on college campus? Right? A panel, right? We don’t want to create things that are tokenised or ways that marginal further marginalize or don’t honor the experience, don’t we need to work in collaboration with our autistic campus partners, students, faculty, if there are any out autistic faculty on your campus, like while they and if they’re interested in being able to share their experiences, I think that’s something to lean into. Same with our practitioner colleagues. I think that’s I tend to be long winded. But that’s all say for now. Feel free to connect with me. And if you want to follow me on Twitter, it’s bnachmanreports. And definitely follow all of us I call it Autism Network, we we’d love to engage with you and a variety of different ways. I love participating in our study, please project pieces. Look, look at the show notes for more information.

Heather Shea
For sure, for sure. Emily, what are your final thoughts? What would you like to leave folks with?

Emily Raclaw
So personally, my brain makes it about me. And I was thinking, what am I? So the students are in my program, I know that they’re having a good experience on campus, but also my programs that compulsory if you’re autistic or neurodivergent. So what am I doing from imagining I have a campus that doesn’t have a program. So what am I doing to ensure that those partnerships that just because they’re cool with me, and the students on the list, are it ever is it actually happened for all is it happening across campus? And I think, for me, like, that’s my next step. And thank you from that perspective for people whose campuses don’t have programs. What are you doing? Because students are there? Whether you have a program or not, they’re autistic and neurodivergent students on your campus? What are you doing to make sure that they’re having an amazing experience, just like all the other students on your campus? Oh, and you can find me on LinkedIn. Emily Raclaw.

Heather Shea
Awesome. Thank you so much. That was that was a great, that was a great summary, because I do think it is everybody’s responsibility. John, it’s your your last what, what would you like to leave us with?

John Caldora
I think just first and foremost, students need to be need to be, you know, at the at the center of this conversation. We describe our program as us as staff led but student directed, we discuss what students want to learn about and that is what we program towards. And so we make sure you know that the students definitely have a voice in how our program operates, how it expands. And I think you know, whatever you’re doing on your campus, you need to talk to your students first because they are the ones that are going to know what your individual campus needs are. If you want to get a hold of me, you can reach me at John.caldora@uky.edu. Or via Twitter. I’m at John CalDora, or through the CAN consultants collective that Lee mentioned earlier.

Heather Shea
Awesome. I am so grateful to all of you for your time today. Thank you so much for sharing your contributions to the conversation and to Student Affairs NOW. Also sending a heartfelt appreciation to our dedicated behind the scenes producer Nat Ambrosey. Thanks Nat for making us look and sound amazing. If you are listening today and you’re not already receiving our weekly newsletter, please visit our website at Student Affairs now.com. Scroll to the bottom of the homepage and add your name to our MailChimp list. And while you’re there, you can check out our archives. If you found this conversation to be helpful please share on social media with your colleagues or students if you’re a faculty member, and subscribe it really helps us build these conversations and reach more folks. So thanks again also to our sponsors. So our first sponsor is Vector Solutions, formerly EverFi. How will your institution rise to reach today’s socially conscious generation these students report commitments to safety well being and inclusion as important as academic rigor when selecting a college, and it’s time to reimagine the work of student affairs as an investment, not an expense. For over 20 years Vector Solutions, which now includes the campus Prevention Network, or formerly EverFi has been the partner of choice for 2000 Plus colleges, universities and national organizations. With nine efficacy studies behind our courses you can trust and have full confidence that you’re using the standard of care for student safety, wellbeing and inclusion, transform the future of your institution and community you serve. Learn more at vectorsolutions.com/studentaffairsnow. Our second sponsor for today is Symplicity. Symplicity is the global leader in student services technology platforms with state of the art technology that empowers institutions to make data driven decisions specific to their goals. A true partner to the institution Symplicity supports all aspects of student life including, but not limited to, Career Services and developments, Student Conduct and well being student success and accessibility services. To learn more, visit Symplicity, or symplicity.com. Or connect with them on Facebook, Twitter, or LinkedIn. If you could take a moment and visit our website and click on sponsors link to learn more that would be amazing. Again, I’m Heather Shea thanks to all of our listeners and everybody who is watching and and listening. Make it a great week everyone.

Websites:

www.CollegeAutismNetwork.org 

Project PEACES study info: https://collegeautismnetwork.org/home/research/peaces/ 

Article citations: 

Test, D. W., Fowler, C. H., Wood, W. M., Brewer, D. M., & Eddy, S. (2005). A conceptual framework of self-advocacy for students with disabilities. Remedial and Special education, 26(1), 43-54