Autism In College: Advice and Resources for Parent and Children with Autism Entering Higher Education

Transcript:

Mya Thomas: All right, welcome to the Parent Partner! My name is Mya, and this is an initiative that I started about a year ago, just to equip parents who have children with autism with direct guidance, supportive community and with relevant knowledge to be able to get through each moment and learn through that moment while celebrating each achievement. This month, while I was working on my physician assistant program applications, I was thinking back to like the last time that I had applied to, you know, programs, which was college applications. And while I was thinking about that experience, I was thinking about all of the different people that kind of helped me with my experience down to my parents, friends, mentors, teachers, and how that ultimately helped me get into my dream school. The summer is a really heavy and important time I know for anyone who's either applying to college or just waiting out the fall. I mean, waiting out the summer until fall comes to enter college. I wanted to focus on the expectations of higher education and how parents who have children with ASD can support their child through these transitions. I want to give the floor to Dr. Brett Nachman, who's on the podcast today. And I wanted to thank you for coming on and let you have this chance to introduce yourself and talk about why you started researching in this field. 

Dr. Brett Nachman: Thanks for having me, Maya. I'm an assistant professor of higher education at the University of Pittsburgh University, and a lot of my work and research focuses on supporting autistic college students with a real acute focus, at least right now, on leveraging their success in college and helping students achieve those measures of success depending on what they define as success for them. My kind of entrance into this space stems from that I'm autistic. I navigated the college entry process like many folks. Now, 16 years ago, and at the time, there weren't as many clear supports out there in the wider landscape for autistic individuals. And mind you, everybody's entrance points drastically vary depending on if they're self-diagnosed or formally diagnosed, what resources they have available to them. I did not necessarily seek out or receive accommodations based on how my autism presented itself. But for me, I was at a point where in my early college years in community college where I didn't really communicate about my autism, I very much kept it tied to the chest, and then when I graduated from community college and was our student commencement speaker, I actually used that as a broad platform for talking about autism, how it affected my experiences and ultimately providing a larger conversation on the challenges that we overcome and the successes we aim to achieve in our pursuits of a college education. So long story short, I was pursuing and got an associate's in journalism and mass communication. My bachelor's was in the same disciplines as I had transferred to Arizona State University. I enjoyed much of the work that I handled at that point, but what I most enjoyed was actually being embedded in academia, being a teaching assistant and writing tutor and a variety of other roles [like] student organization leader. And I was thinking: “well, how can I really embed myself in academia in a more substantive way beyond this point?” I looked into graduate programs for higher education, so those are your student affairs professionals, your academic researchers who study education, and that seemed like the most viable pathway for me, and I ultimately jumped into a doctoral program. While my initial interests were strictly in community college transfer, which was illustrative of my experience, I realized that I perhaps had the most meaningful opportunity, and my most meaningful opportunity could actually be in looking into autistic college students. There hadn't been much research a decade ago on this front, certainly not in my discipline. Over the past 10 years, my research, my leadership, and my service has largely been in the world of autism and higher education. I've been on the leadership team of the College Autism Network, which is a nonprofit organization for the past seven [to] eight years. And I'm happy to talk about much of my research, which is within this landscape. Autism is not only deeply tethered to my personal identities, but also how I navigate life and navigate my profession. And ultimately, a lot of folks, when they hear my name or read about me, autism is very closely tethered. I'll say I'm not just a one-trick pony and I'm not just limited to autism. I do work in other spaces too, to be sure, but it's a space that is deeply important to me in terms of supporting other autistic individuals in academia, particularly autistic college students, and more importantly, playing the role I can in elevating experiences for autistic individuals who are often absent from any conversations. I carry with me a lot of privilege as a white, middle class, cisgender man. And often many of your typical examples or common examples of autism in the media have often been reflective of the identities I just mentioned. But we know that the autism community is a real rich tapestry of folks, folks who are women, people of color, non-binary, LGBTQ+, and additional minoritized identities. So whatever role I can have in complementing and further echoing other additional individuals' perspectives, that's super important to me.

Mya Thomas: Yeah, thank you for that. I really like how, you know, you yourself have autism and you decided to really delve into the research and into the experiences of autistic students. In one of my previous podcasts, I was talking about how research is like ruled by neurotypical people and like sometimes research on autism can kind of even overlook some things that are really important to them just because the researching community doesn't have enough people who are of the community to be a part of it. I think this is really important work you're doing and I also really love how you mentioned that in the past like especially when you were in college, and even like honestly like when I was like in high school/ early college, I feel like there wasn't much conversation surrounding Autism Spectrum Disorder and how it presents in academia and further education beyond high school. So I think this is really important work that you're doing. And I kind of wanted to gear this to the parents just because this is mainly who will be watching this. Hopefully there's some about-to-be college students who have autism watching as well. But I just want to kind of keep that in mind for parents who are worried about the rigor of college. I feel like I always say this, like, especially when I was in college, like every year, I feel like the kids get smarter. Like every time a new class comes in, I’m like: “whoa, like I wasn't doing that as a freshman”. And I wasn't like doing this, but like every class cultivates a new sort of like, I don't know, drive and education, but I feel like it also just makes school become more rigorous. I feel like with more knowledge that we have and with things like that. So I feel like parents now especially are probably thinking like college is so rigorous and like even for me college was very hard. I wanted to know if there were any college programs that accommodate college students with autism spectrum disorder and kind of help them with their specific needs.

Dr. Brett Nachman: Yeah, absolutely. In fact, there are well over a hundred of what my colleagues and I call “autism specific support programs” or ASPs around the country. Many years ago, myself and Katie McDermott and other folks in the College Autism Network developed a really comprehensive list of programs that specifically serve autistic college students that are based in higher education themselves, right? They're based in colleges and universities. Our colleagues and I, we literally went through every single college, university, and website to ascertain, at the time, what was the most extensive list. And ultimately, Katie and to some extent me, we've been updating this recurrently to reflect what is the current landscape. Some programs close, others open, some expand their mission to have a broader neurodiversity focus. Essentially, the way we kind of view these autism-specific college support programs is that they're primarily or specifically designed for autistic college students. Students are enrolled in college, and they're taking credits. This is not the same as, for instance, like programs that are college adjacent. These are for students who are enrolled at a college or university. And what's awesome about these programs is they're very varied. Many of them have an emphasis on mentorship and support, sometimes it's from other students or staff members, but some have credit bearing courses that focus on topics like self-advocacy and career preparation, navigating different social situations. There are, like I said, there are a number of programs around the country, more than 100. If you go on the College of Autism website and look under our resources, there's a hyperlink for it, and I can share that with you if you want to put it in the show notes. But ultimately, folks view it as like a database, and you can filter it based on the region of the country, specific services that they offer, etc. And it's, mind you, it's not absolutely comprehensive, but it's pretty comprehensive and covering the landscape and parents and prospective students and other folks use it as a tool to see what's out there and figure out, hey, is it worth enrolling in these programs? Some programs carry with them a cost, so not all of them are free and that's where it's up to the families to determine if the services are worth it. But many students who participate in these programs, especially if it's based on their own volition and not necessarily just their parents pushing them to take it, may find a lot of merit in engaging in programming and also finding community and friendships with other students. It's an opportunity for self-reflection. Not all programs are created equally, but they can be very fruitful and furthering students in terms of their sense of self-worth, their identity development, and also their academic and professional pathways in tandem.

Mya Thomas Yeah, thank you for that. I didn't know that the College Autism Network had a comprehensive list that was always like changing and like keeping up to date with all of these resources. So I think that'll be really helpful, especially for parents who are kind of helping their child navigate through this time where it's like, you know, there's so much organization that comes into applying for colleges. I remember like I'm like so type B, and like my mom was, you know, making me make a list of like all of the colleges and like different spreadsheets and the costs and the deadlines. I was like, “oh!” I just couldn't keep up with it. I was like I couldn’t care less, so I think this is really great to have it all in one space, just so that they can keep up with the changes that are going on through each program, see which ones are expanding, which ones are  specific to autism and whether or not they want one that's like specific to autism or like, you know, just neurodiversity in general, if that's helpful. I think this is really a great resource, especially for parents who are going through this for the very first time, [like] first gen and other marginalized communities as well. It's a really beautiful resource. And I feel like in addition to just getting accustomed to a new academic setting, choosing which ones are like the best for your child is really important. I was wondering, like, especially from your personal experience and like entering the college space with autism spectrum disorder, do you think that, you know, do you have a specific preference for like community college or living on campus? I know there's probably pros and cons to both experiences, like  coming down to cost or like, you know, developing independence and different things. But I was wondering if you had a preference and like, which one do you think is better? Not that there's a better option, but like, what would you recommend in terms of living situations for children with or incoming students with autism?

Dr. Brett Nachman:  Yeah, it's highly situational, right? So, you're absolutely right about cost. Community colleges are often a more viable bet for any student, but it's going to come down to access. And we know that many students and families live in isolated areas, rural areas, areas where there are not a plethora of higher education institutional options. So that may often influence what you pursue and where you go and what you have the opportunity to pursue, not only based on cost, but at least in the case of four-year institutions, right. Are you, are you accepted? And so community colleges, I think, have many merits, but are not the end-all-be-all option. I think for one, the smaller class sizes are fruitful in my spaces, particularly in the autism community where there are many of us, not painting with broad strokes, but you sometimes like to have more intimate experiences where you're not just one of 100 or 200, where you can have those relationships with faculty members, particularly if you are someone where you may need some additional support. Some folks, like I said, seek accommodations and those of course are implemented for the benefit of being in a smaller classroom setting. And sometimes you can find these at your four years, particularly if they're, you know, small liberal arts colleges, you know, you can have an opportunity to communicate with the professor about what your needs are and what your expectations are to be successful. That's also highly contingent on being a strong self-advocate, which is super variable across the autism community and where you are in your own development. Community colleges can be really great for folks who are, how may I say, in different spaces in life, right? Community colleges draw a high proportion of adult learners, folks who have families, folks who might be dual or concurrently enrolled in high school. Community colleges are a real melting pot in the best way possible. And for me, it was really wonderful in that I was engaging with folks across a variety of ages and backgrounds and life situations. And for my situation, it worked out well. I lived at home at the time. I commuted five to six miles each way. I either used my parents' car or was dropped off. If I was a bit closer, I could use bus transportation, or sometimes I drove myself. All that to say, it really just depends on where you live, what your costs are, and what your desires are. And importantly so, does the community college offer certifications or courses or transfer agreements that might be viable for students in thinking about their next stage beyond that point? Not everybody wants a four-year degree, sometimes a certificate or some other mechanism of propelling yourself into the field, that will do just fine. So, it's not a one-size-fits-all approach in that community colleges are great for everybody. They're great for some. And we also see a lot of, at times, what we call reverse transfer: someone who starts at a four-year institution and then transfers to a two-year or community college and completes their degree and then engages in an upward transfer back to the four-year, so there's a variety of different pathways. And I don't think there's a perfect approach. I think what it comes down to is being mindful of the options that are available to you. And this is where it really needs to be a true collaboration across parents and students where they know what is in their area, should they want to stay local, because it could be where they move out of state or to another place in the state. What's financially reasonable? What services and supports are available at the college? So it may not even have to be, and there are some community colleges with autism support programs, not many, but might there be a student organization that interests them? Some community colleges also have residential halls, not a ton, but a sizable proportion. And I know you had asked earlier about the viability of residence halls. And again, it comes down to are they able to support neurodivergent students? Do they have an infrastructure for that? Do they have staff who are trained in working with such folks? Are there specific activities or organizations for them? It's not going to be consistent across the board, but the more that you expose yourself to what's available, then you can winnow down to what makes the most sense, and I'm also a huge advocate of: if you have the means to visit the institution physically in advance, great, do that, take advantage of that, if not virtual tours or conversations with folks via Zoom or other means. And I'll say in tandem, there's a lot of programs that are offered completely virtually now. And Arizona State, where I ended up transferring to, is known not only nationwide, but worldwide for having a very robust online infrastructure where students or even Starbucks employees can get their college education paid for by being an ASU student. So there's a number of different options out there. It's just about being informed and engaging a lot of information curation.

Mya Thomas: Thank you. I didn't even know. I tried to do the best research I could about all the different ways that you can enter and like, you know, maneuver through college, but I didn't even know about the reverse, um, what did you say? The reverse transfer? 

Dr. Brett Nachman: Yeah, that's absolutely right. 

Mya Thomas: Yeah. I didn't even know about that. And I, you know, usually I'm thinking transfer is always one way where it's like you're at community college and then you go into the four year institution, but I didn't know there were so many different options. And I think this is great for parents to know because I mean, I already went through college, you and I both went through college and I didn't know that. So that's really great to hear that there's so many different options and that also living at home and doing community college versus like being on the campus can have it's up like it's upsides and also like it's downsides just depending on like where you live and like if you're in a more isolated community or all sorts of different things so I think that's really wonderful that you know you broke that down for me um and also I was like when I was doing my research I was listening to this podcast called um Autism Goes to College and one of the like former students of college was talking about how she was like “yeah you definitely have to go in” and like fly out to the colleges and like check out like what it is in terms of like living situation and like residential halls or like dining halls and make sure that there are some you know ways to compensate that way if students have ARFID or like different things like that, or classroom sizes to see if are there some classrooms that are like smaller or larger or, you know, different options for me. So I think that, you know, kind of aligns with what they were talking about as well. And also, like, it's good, you know, just to fly out and see the colleges because I think parents will also be scoping out the scene and trying to figure out, like, what would be best. And ultimately the parents will play a large role in the decision-making. But as I was doing research and I came upon your paper, which was “A little too helicopter-y, reconciling parental involvement during autistic students' transition to college,” you were kind of talking about the different steps that came with autistic students gaining independence and how the first two steps were like upheaval and tension. And it made me think back to, or think to some of the kids that I work with with autism. Although none of them are at the college stage, a few of them are, you know, around like 13 and 14, and their parents are kind of talking to me about like, you know, I'm thinking about college and like, I want my son to be, you know, focused on this, this and this right now. And I always tell them, I'm like, I think that's not part of my job description. I can't like, you know, go through these goals with your son or daughter, unless, you know, I get it backed by my clinical supervisor and stuff like that. But I think it kind of made me think about how parents have their own goals for their kid and they want to, you know, plan or they're used to planning like their child's everyday activities, like, you know, reminding them to do certain things, planning out different aspects of their life. And I feel like when it comes to college and like the rapid changes that are surrounding it,   I feel like parents can get to the tension stage you were talking about and feel like they should be involved in this part of their child's life, but they may need to take a step back. I was wondering how, you know, you would advise parents to practice that delicate balance of letting their child know, like, I'm here to support you and I'm here for you, but I'm not going to be too “helicopter-y”.

Dr. Brett Nachman: Yeah, yeah, the quote in the title that you're referring to a little too helicopter-y came from one of the people I interviewed as part of my dissertation work who was helping run an autism support program, and it really captures the essence of what a lot of folks who work in higher education see, which is that parents of autistic children can be very well-intentioned, but for better or worse, some, not all, but some can be overbearing. The challenge of it all is in higher education, it's not like high school where parents can directly talk with teachers or staff members. There's FERPA restrictions where the student has to sign off for their parents to have certain rights or access points. But ultimately, it is incumbent on the autistic student to make decisions for themselves, not to say that they can't communicate with trusted allies on the side, and those might be staff members at the higher education institution, your college or university, but it could also be parents or siblings or other trusted figures in their lives. The challenge that parents face, at least those who are actively involved, is that they may want to be guiding their child to make decisions in a certain way that reflect their values or their understanding of how the system works or what they believe is the best outcome. The problem is that your child, your autistic student, is likely at least 18 years old, or even if they're not, they're still a college student and they are in a space where they need to be communicating for themselves. Parents sometimes may try reaching out to a professor or staff member, and ultimately, there are major restrictions. And parents can take umbrage with that, but they also may realize concurrently, you know what, maybe my child does have to experiment and try something out or say the wrong thing and get some feedback. It is super hard. I came from a family where I had involved parents, but they also knew what they could and couldn't do. And they also knew that they had to give me more agency for me to make my own decisions, but I would consult them. Every dynamic is so different. And what you allude to in the article is that there is like this, kind of, multi-stage process where parents may start out from this mindset of where they really want to be doing everything for their child because that's what they were accustomed to when they were still, you know, under 18, when they were still in high school. But the tension, the challenges, the upheaval that unfolds is when there's clashing between what the parents want and ultimately either the student being relatively passive and not really wanting to make decisions or the student being defiant or the student, the student/child, saying like, “hey, I don't know what to do, but you can't be completely enmeshed.” There's no right or wrong answer here. But what I would contend is most important is that prior to college in the months and potentially even years prior to college, is there to be a gradual, and I want this to sound pejorative, but almost like a weaning off where the parents are gradually letting go of some of the authority and some of the decision-making that may have been part of their dynamic with their child and gradually allowing them to be more independent. And that can manifest in terms of figuring out what courses to take, or can also look like figuring out how to manage one's day. What I think I saw most effectively in the parents and the students who I interviewed, and this is also materialized in a number of different ways in which I've been deeply engaged with the autism community, is that comes down to open communication and shared understanding around what is going to be most fruitful for that relationship, and the more that those decisions can be made mutually from the onset, I think all the better. Ultimately, staff members who might be working closely with the student who's autistic and who might have the relationships with the parents, if they have an acute understanding of what that dynamic looks like, through what the student is relaying, then hopefully if they're well-informed and if they're malleable in their advising approaches, they can kind of work with them to account for maybe some of the parents' concerns without having direct communication with the parents. It's a very tricky thing and highly individualized.

Mya Thomas:  Yeah, it sounds a lot like what you were saying earlier about the college autism network and how they have all the resources kind of for socialization and learning how to self-advocate. I think, you know, parents could kind of do a bit of both where it's like they're doing the parent thing. They're just like checking up on their child while they're in college, but can also just provide resources and kind of be like, not laissez-faire, but kind of like hands-off and not trying to be too embedded in their child's life. And that might provide like the best balance without breaching any sort of privacy or infringing or like breaching or not breaching, causing tension between them and their child, especially when they're navigating this new environment. So I think that's some really good advice. And I guess for the last question, I guess like this kind of relates also to just students starting these new connections with people engaging with like their mentors or advisors different faculty and professors new friends roommates all that sort of thing, I kind of wanted to you know this could be either just like a heartfelt statement or like something that like comes from experience, But just like how can students with autism who are in college or beginning college kind of find comfort in this environment and prevent burnout? 

Dr. Brett Nachman: That's a tough one. Right. And I think that's where a lot of it is experimentation with different approaches, right? So, in avoiding burnout, it's going to look completely different with someone who has a history of anxiety and depression, OCD, overwhelming themselves with stuff. And burnout materializes in distinct contexts where you feel like you have a loss of control or completely enveloped. And I'm not one to say like, “okay, here's the one solution that's going to work for everybody.” But what I can offer is the sentiment that it's so important for the individual student, and to some extent their families and other important figures in their lives, to engage in a degree of collaboration of recurringly reflecting on what's working and what's not working at different stages in the process. So it could be at the beginning of the semester, it could be the end of the semester, it could be during the summer, whenever. And I think that that's just general advice that can apply for a lot of folks who are navigating college and determining “what makes me feel good. When do I feel like I'm at my happiest? When do I feel like I'm my calmest? When do I feel like I'm most successful?” And then asking those same questions on the flip side. And I think having maybe writing that out or even just having those conversations can help folks identify opportunities for making changes. There's no way to anticipate all the challenges that can unfold, but I think there's always a learning experience to be had when something works well, but even more so when things don't work out so well, whether it be getting a bad grade or dealing with a breakup or having a conflict with someone, whatever the case may be. I think that the challenge that a lot of folks face, and I think you alluded to this earlier, is that I think college students now versus 20, 30 years ago have more pressures in terms of academic expectations, in terms of what they're expected to produce, in terms of entering highly variable employment opportunities, depending on the state of the economy and the respective disciplines they're in, being in very tenuous environments as it pertains to equity and inclusivity, where we see a lot being pulled back and folks not having those communities and spaces that had been around in great abundance a mere months or a few years ago. So what it comes down to is a lot of reflection on what's working, what's not, and pivoting and realizing that it's okay for things to not always go well, and it's okay to make quote-unquote “mistakes.” What matters is having good people around you and making sure you know what resources are available. The problem is a college doesn't feed all of this to you on a plate or on a specific checklist. It requires a lot of exploration and the challenge with many folks in the autism community, and in many spaces more generally, is organizational skills and executive functioning and being able to handle a lot of information. So the more that the individual can come up with unique systems that make sense for them to process information and to save content that will serve them throughout different aspects of their life, all the better. 

Mya Thomas: Thank you. That was a really nice ending to kind of wrap it up. And to provide some hope because I feel like, especially when it comes to life after college, like people are thinking like, oh, like what about the job market? And what about this? But it's really great, the resources that you provided because they kind of encompass like all of these different parts of college, like the entering and meeting new people and learning how to self-advocate down to like the very end and like career opportunities and future, which is really great for, you know, the comfort of the parents as well. So I wanted to thank you so much, Dr. Nachman, for coming onto the podcast and giving so much insight and information for parents who are looking for ways to support their child's journey. And to the listeners, whether I work with, you know, with any of you or not, I really hope that this was helpful and that you benefit from this in any way. If you have any questions or feedback, please email theparentpartnertpp@gmail.com. Thanks so much for listening!

Resources:

-A Guide for People with Disabilities Seeking Employment. (2025, June 13). ADA.gov.

https://www.ada.gov/resources/employment-seeking-guide/

-Autism-Specific College Support Programs (ASPs). https://can.softr.app/

-College-Bound students & family resources. (n.d.). College Autism Network. https://collegeautismnetwork.org/family-resources/

-Nachman, B. R. (2024). “A Little Too Helicoptery”: Reconciling Parental Involvement During Autistic Students’ Transitions into College. Teachers College Record the Voice of Scholarship in Education. https://doi.org/10.1177/01614681241311637

-PODCAST SEASON 5 | Autism goes to College. (n.d.). https://www.autismgoestocollege.org/podcast-season-5/