The Pioneers podcast convenes the world social change makers to share their knowledge, challenge our assumptions, and offer practical solutions for a more equitable future. The Pioneers podcast is hosted by HeartShare Human Services, a non-profit supporting and empowering marginalized New Yorkers since 1914.

Today, we would like to talk about educational support for those on the spectrum with Cara Ryan. Cara Ryan is a Ph.D. student in cultural anthropology at New York University. At NYU’s Moses Center for students with disabilities, she worked to provide equal educational opportunities for students with disabilities. Along with her colleagues, she developed the NYU Connections ASD program, an optional year-long program offering one-on-one and group support for NYU students on the autism spectrum.

HeartShareNY: Welcome, Cara.

Cara Ryan: Thank you so much for having me today.

HeartShareNY: Absolutely. I’m definitely curious to see how you developed this program.

Cara Ryan: Absolutely. I would love to just tell you a little bit more about the program and, along with that, how we got started with it.

HeartShareNY: Sure. Can we start with you describing the scope of your work when you were at the Moses Center?

Cara Ryan: Absolutely. When I was in the Moses Center, and I left in August because as you mentioned I’m a Ph.D. student in cultural anthropology now at NYU, but I was previously at the Moses Center for five years and while there I was a senior disability specialist. I worked with students with disabilities at NYU and what the Moses Center does is provide accommodations to students. Those accommodations help facilitate and make possible equal educational opportunities for students with disabilities. We worked with undergraduates and graduate students in providing all sorts of different kinds of accommodations. Those sometimes included academic accommodations. Maybe extra time on exams, or different types of technology the students might need or securing sign language interpreters. Sometimes they were housing accommodations. Making sure a student who might, for instance, need a single room for whatever reason had access to that, or if they needed a wheelchair accessible room, working on that. So that’s what I did at the Moses Center and while there I, along with some of my colleagues, created the NYU Connections ASD program and I’d love to tell you a little bit about that if that’s okay.

HeartShareNY: Yeah. Please do.

Cara Ryan: So, the NYU Connections ASD program is a free program for NYU students on the spectrum and the program is run through NYU’s Moses Center for students with disabilities. Also, we work very collaboratively and quite closely with NYU Steinhardt School for Culture, Education, and Human Development. The program is in its second year right now. We started 2016-2017 and now it’s 2017-2018. It’s open to any NYU student on the autism spectrum and, as you mentioned in my bio, the program is unique we think because it combines weekly one-hour individual meetings with a staff member from the Moses Center and, at least, bi-monthly group meetings. It’s very exciting. We currently have 25 students participating in the program and the last two we had 16. It’s been, we think, a successful program because we have all the students continuing in the program and we’ve had several new students join.

HeartShareNY: That’s wonderful. How many students are involved now in the program?

Cara Ryan: 25. We anticipate that we’ll probably be growing each year, which is exciting, and we have several students who are freshmen. That’s really exciting. We’re open to undergraduates and graduates but of course, it’s awesome. If you’re a freshman and you’ve come to NYU, this might be a program that can really help you in the transition to college, which is difficult for everybody.

HeartShareNY: Absolutely. Was it difficult to identify students who would be eligible for this program? Were they self-identifying? Did you have to do some kind of recruitment to sort of open up the dialogue and let these students know it’s okay to have extra support? How did the enrollment in the program sort of happen?

Cara Ryan: Yeah, that’s a great question. So, what we did was we let all students who were registered with the Moses Center who were already receiving accommodations, we let them know about the program and we said, “Hey, if you want to join this you are welcome to join it. If you are on the autism spectrum you’re welcome to join this program.” There are students on the spectrum at NYU who are not receiving any other accommodations and so we’re not affiliated with the Moses Center because maybe, the standard types of accommodations that the Moses Center provides, maybe those students don’t need extra time on exams. Maybe they needed some additional support. So what we did is to make sure that our academic advisors knew, and all of the different schools knew, about this program. To be totally honest with you I thought, “Okay, maybe five to ten students will sign up the first year.” We were really surprised and happy that we had seventeen students sign up and now, to have 25, I think it really shows that there’s a great need for this program and that there’s growing acceptance.

HeartShareNY: Certainly, and it seems as though you created the NYU Connections ASD program because there was a gap in the services that were provided. What are the rationale that you have for creating this program? How is it different from what the Center was already providing?

Cara Ryan: Absolutely. We started the program because we saw some really incredibly talented students on the spectrum struggling at NYU. They were often not struggling because they weren’t capable of doing their coursework. They were often struggling, quite frankly, with a lack of understanding from the larger NYU community about autism, or they were struggling with the transition to college, or challenges with communicating with professors or TA’s, or maybe in a roommate situation or a living situation. We thought we really need to create something that’s tailored specifically for students on the spectrum and that’s why we came up with it. When we were doing research to find out… We’re having more students on the spectrum each year attend NYU and that’s great. We’re also seeing students struggle. So what’s going on here? We did a little bit of research and we found out that students with ASD across the country are going to college at steadily increasing rates, which is great, but currently 32 percent of students on the spectrum go to college and unfortunately only 39% of those students actually complete their degrees. To us, that’s just not acceptable. We want to keep these amazing students at NYU. We really feel like NYU really truly benefits so much by having these students and so that’s why I wanted to create the program.

HeartShareNY: Absolutely. I’d actually like to understand a little bit more about the one-on-one and the group support that you provide. What would be an example of that?

Cara Ryan: Sure. So in the one-on-one meetings, what we do is, we go over four kinds of key areas each week. We always make sure that meetings aren’t the exact same time. It’s always the same person that somebody’s meeting with and it’s always the same kind of set of topics that people go over. That’s academics. So that’s the first thing. That might be like, “Hey, I know you had that test coming up, how did that go? I know you had wanted to talk to a professor about a letter of recommendation for a graduate school program you were thinking about, how did that go? You want to kind of talk about that. Then the second thing would be campus life. So we might chat about, “What’s going on campus this week that you might be interested in? Is there a club that you–I know you had thought about that– ave you considered joining it? Then, also, social life. So what’s going on with social life? Then the fourth thing would be daily living. That could be, an example of that might be, if you’re on campus we might say, “How’s it going with that roommate who is always leaving dirty dishes in the sink? Were you able to have a conversation with her about that? How’d that go?” Or it might be, “Hey I know you’re commuting, your a commuter student and you have a far commute, how’s that going? I know you have 8 a.m. classes, what’s going on with that? If you’ve had a hard time getting to some of those classes, are you communicating with your professor about that?” So that’s what the one-on-one meetings are really about and then the group meetings, they’re really about fostering a sense of community and belonging. We had informal conversations with a lot of students on the spectrum who said that they often didn’t really feel like they had a place, or they didn’t really feel like they had a community or a sense of belonging. That’s what the group meetings are really about and sometimes they’re just casual fun. Eat pizza, hang out, chat, maybe play games, and sometimes they’re about bringing in experts or cool resources from both within the NYU community. For instance, we’ll have somebody from the Wasserman Center, which is our Career Development Center, come in and give kind of a presentation to students about how does the Wasserman Center work. How do you go ahead and write a resume, how do you go about using the Wasserman’s amazing systems to find internships and jobs, how do you set up appointments at the Wasserman Center to go over interviewing? Sometimes what I think is really cool, is that we bring in, oftentimes, self-advocates from the autism community to come in and talk to students. So we had, for instance, Jesse Saperstein come in. He’s a best-selling author on the spectrum and also a public speaker, a motivational speaker. So we had him come in and have him give a public talk to the entire NYU community but then also, have dinner with our students. They had a chance to chat with him. I should say that the group meetings, as well as the individual meetings, they’re happening on both the Washington Square campus, which is located in Manhattan, and also the Tandon campus, which is our engineering school located in downtown Brooklyn.

HeartShareNY: It sounds like you are providing or the program, rather, is providing multifaceted holistic support to those students. Have you seen a change in how those students are able to sustain themselves in their programs, because you were talking about how difficult it is to complete their degree program or their certificate program, how has that changed now that all of these supports are in place?

Cara Ryan: Well assessment to us is really important. We just finished up our first year last year and we’re ongoing in the second year. We informally are tracking in most students all the time and we’re hearing really positive responses. Then at the end of last year, so at the end of the first year, we had professor Kristie Koenig, who’s the chair of the occupational therapy department at NYU at Steinhardt, who’s been one of the founders of this program. We’ve worked really collaboratively with her. She held focus groups with students to find out, “Why did you stay in this program all year? What were you getting out of it? What did you like about it and what can we do to make the program better?” Students really said things like they really enjoyed having a place to just check in with somebody once a week. They really liked the group meetings. In fact last year, the one complaint about group meetings was that they didn’t occur enough. We were doing them once a month so we decided, okay, we really need to do them at least bi-monthly. The program is sort of evolving and we’re working really hard to make sure that it’s a sustainable program at NYU. Last year we had said it’s a one-year program but we actually decided the students who were part of it last year, if they want to continue being part of it, they’re welcome to continue being part of it. Almost every single student stayed. So to me, that really shows that the program is beneficial to students. Students who are saying, “I want to stay in the program.” I think that’s kind of evidence that it’s a really worthwhile thing for students.

HeartShareNY: Certainly. That sounds like a very positive response and I’m glad that it was so helpful to them. On the administrative side, or just in the tradition of what university life is like, what were the challenges that you faced bringing these supports to students?

Cara Ryan: That’s a really good question. I’d say it’s always hard to kind of start a new program and to make sure that you have institutional support, but I really have to say that NYU really has provided that support. NYU’s really committed to diversity and to us. People from the Moses Center, people like me, people like Christy Koenig from Steiner, we’ve always said, “Diversity includes neurodiversity.” I think, fortunately, that’s a message that’s really gotten through to the NYU community but of course, there’s always challenges in terms of, “How do we actually go about organizing this program? What’s the best way to go through? How do we advertise the program? How do we grow the program? If we had 17 students one year and we have 25 the next, how do we sustain that?” Those are just ongoing things that we’re just continually working through. I think one way we’ve been able to be successful like that is through collaborations throughout the university. So it’s not a program that could exist solely in the Moses Center and it’s really not a program that could exist solely in Steinhardt. It really needs to be a collaborative process. I think that’s one thing that’s really been beneficial.

HeartShareNY: Yeah. It sounds like you face those obstacles with grace and the program sounds very successful so congratulations on spearheading that. I’d like to talk a little bit about what you’re doing now. What’s the scope of your research in the doctoral program? I’m not sure if it’s related at all to disability studies, or anything like that, but what are you up to now?

Cara Ryan: Yeah it is. I am so interested in disability. Very much so. I’m interested in disability and in looking at disability, not from kind of a deficit understanding of what disability is. I’m really looking at it from disability as a form of human difference. So to me anthropology, cultural anthropology, is a really good discipline to do that. NYU’s anthropology department has a long history of some really amazing folks there being really interested in disability and doing really incredible things. So I’m working with them and I am very much interested in autism. Interested in autism through the lifespan and really looking at adults on the autism spectrum, and the communities that adults on the spectrum form for themselves, and how they support each other. That’s something that I’m looking at, sort of deformation of adult autistic communities.

HeartShareNY: That sounds like a very worthwhile endeavor and if you ever want to partner with HeartShare on that, I mean we do have an expansive developmental disabilities services part of our organization, so I’d be happy to talk offline about that. It sounds like your research would really help how we develop communities among our program participants. It sounds wonderful.

Cara Ryan: Thank you, and the work of HeartShare is so amazing. I mean I’d love to talk more about that.

HeartShareNY: All right. That’s great. I’ll put that on my to-do list. What could our listeners do to enact social change? I know that there are many levels to that, it could either be maybe students that don’t have disabilities that are on campus, it could be maybe university administrators who haven’t implemented such a program yet, what can we do to create a more inclusive higher education setting for students with disabilities and for students on the spectrum?

Cara Ryan: Great question. Well, I would say get educated about autism and really, to do that, I recommend to your listeners that you learn about autism directly from autistic people. There are some really amazing organizations out there you could check out. ASAN, which is the autistic self-advocacy Network, if you’re particularly interested in autism and college life, ASAN has a handbook that’s available on their website called, “Navigating College,” which is written by people on the spectrum who’ve graduated from college talking about their experiences. I would say that there are a lot of portrayals of autism popping up in popular media right now more than ever and some of those portrayals are better than others, but I would really urge your listeners to not think that one portrayal that you see is definitely an accurate portrayal of autism. Especially if the portrayal is not done by a character who’s actually on the spectrum themselves, which is a problem that happens frequently. There’s a saying in the autism community that if you’ve met one person with autism, you’ve met one person with autism, which is just a hopeful reminder that people on the autism spectrum are just as unique and diverse as neurotypical people. So ask questions. Is your school, or your college, or your child’s school, or your child’s college, is it inclusive? That’s not just people on the spectrum but for people with all sorts of disabilities. Is your workplace inclusive and accessible? If not, then asking questions and finding out why not and what you can do to make it accessible.

HeartShareNY: That sounds like a lot of great advice. I hope that our listeners can pick one of those and sort of run with it. That all sounds wonderful. If we want to learn more, how can we find you or your work? I suspect that folks might be interested in how you develop the ASAN program, perhaps in your research. How can we reach you?

Cara Ryan: Absolutely. People are welcome to email me. My email is public. It’s on the NYU website. It’s cara.ryan@nyu.edu. I don’t work at the Moses Center anymore so I should say I have transitioned into the Anthropology program. You might want to speak with the Moses Center and they are a lovely group of people. I can give you the phone number for the Moses Center, which is (212) 998-4980. They also have an email address, which is mosescfd@nyu.edu.

HeartShareNY: Wonderful. That sounds great. Is there anything else that you like to add before we go?

Cara Ryan: I think I would just kind of like to end by just saying that really, the benefits of increasing neurodiversity for universities, and for employers, and just society in general, is it’s really tremendous. Research on ASD and the rise of the neurodiversity movement, which has really let them live primarily by autistic adults, has really completely, I think, upended the way that ASD is being understood. As I mentioned before, every person on the spectrum is unique. I think it’s important to remember that many people with ASD often have incredible strengths in a wide variety of areas. For instance, research shows that people with ASD often excel in areas such as system thinking and possess incredibly detailed oriented ways of processing information. Yes, of course, there can be challenges for people on the spectrum such as the difficulty with transitioning to college and additionally, people on the spectrum are often subject to bias and discrimination from a society who’s still largely ignorant about autism. I really think that all of those challenges can be supported. Thank you so much for having me. I really appreciate it.