Autism Goes To College
Autism Goes To College
EPISODE 25: What kind of supports should you seek? Accommodations? An OT? Both? - how services can compliment each other in practice
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For college students on the spectrum, it's hard to predict what might be challenging. Some folks are academically capable, feel comfortable with accomodations, and find social stuff difficult. Others may be easy with social interactions, but find it hard to manage time and keep classwork organized. Procrastination can create stress and anxiety. One way to get extra support is to find an OT. OTs are occupational therapists - trained to help anyone navigate their days by figuring out what's not working and collaborating with you to come up with strategies to make it easier. Karen Keptner is an OT and a professor of OT, and in this episode she talks with Katharine about what kinds of support OTs can provide, how to find one on or off campus, and how to pay for services with insurance.
Now that I'm genuinely enjoying my social life at Hamilton, I'm more incentivized to actually be social.
SPEAKER_06Having autism isn't something that should prevent people from having a successful college experience. It takes work.
SPEAKER_00Join clubs, find groups, find your people, find ways to fit in, see a peer mentor, see somebody who can help you get involved on campus.
SPEAKER_03There were a lot of black children on the spectrum who were also deaf. She's not the first one.
SPEAKER_02I researched all of the majors and I eliminated the ones that sounded not interesting to me. So then I changed it to chemical engineering to work for chemistry. Then I took an environmental science class and I'm like, I think environmental issues are really important, and I'm really passionate about state sustainability and stuff. So then I changed it to finally environmental engineering.
SPEAKER_08Especially in a college town like OutdoorDash. Like, just go out and get the food. It's good exercise.
SPEAKER_07Hey everyone! Thanks for joining us on this episode of Autism Goes to College, the podcast for students on the spectrum and for everyone who supports us. Navigating college is always a challenge. So here are the hacks, insights, and great ideas you've been looking for to make college work for you. We're a small group of self-advocates. We're all in college or recently graduated, and you can do this too.
SPEAKER_05Hey everyone, thanks for listening to our podcast, Autism Goes to College. I'm Catherine O'Brien, and I have just started working on my PhD in special education at University of California Riverside. I started my college career at Bowdoin in Maine, which was a wonderful experience for me. After working for a few years, I went back for a master's degree at the Harvard Graduate School of Education. There, I focused on science teaching with an equity focus in urban schools. Most recently, I spent five years teaching at Milestone Day School, where I also led the technology committee and coordinated LGBTQ inclusion. Then, last fall, my own life experiences as a student on the spectrum and my teaching experiences led me to apply for the program I am in now, which will focus on autistic adolescence with a goal of improving outcomes in our transitions to adulthood, including both to college and to the many other paths we take in life. A little bit about this podcast and our project. Autism Goes to College began as a documentary film, following five college students on the spectrum as they navigated college life. Eric Lynn Thorst directed the film, and it premiered at the Newport Beach Film Festival in 2019. And was also selected to screen at South by Southwest EDU in 2020, which of course happened online. At the end of this episode, I'll give you some details about where you can see the film today. And it's all at our website, autismgoes to college.org. So, with screenings limited since the pandemic began, the team wanted to open up the conversation and created this podcast. The first five episodes featured the stars of the film talking in more depth about their college experiences and what they are up to now. And since then, we've talked to students on the spectrum all over the map, sharing all kinds of experiences, working towards degrees and certificates around the country, plus a college counselor, parent perspectives, and admissions officers. Every month we drop a new episode. Here's what's also new there's a resource center on our website with dozens of outtakes of important stuff that didn't quite make it into the film, all of the podcast episodes, and blogs from experts and from student advisors from the film. Fun fact this project was recognized as the best of the internet in 2022 by the Webby Awards Anthem Awards, winning gold for diversity, equity, and inclusion. And we keep making it better. This podcast is here for us to share and open up the conversation and include more insights from self-advocates on the spectrum. Same with the Resource Center. So reach out if you'd like to get involved or have ideas for us. Let us know what would make it more meaningful and valuable, or what you'd like to contribute. And thanks for listening. We do hope to hear from you. Today's episode of Autism Goes to College demystifies a kind of help many students on the spectrum find truly helpful, and that is OT. Okay, but what is OT? Fair question. Although an OT diagnosed my sensory processing differences back in elementary school and went on to help me with handwriting, movement, and vision, many people have never heard of occupational therapy or the ways OT can help students. It's safe to say I am a huge fan of OT, and I think after this episode, you will be too. My guest is Karen Kepner, an occupational therapist, and that is what OT is, occupational therapy. But what does that mean? And more importantly, what does it mean for students on the spectrum? And how can you get some? Karen is a professor of OT at Cleveland State in Ohio, and she'll talk about where to find the OTs near you too. That's our episode today. Karen, thank you so much for being here with me.
SPEAKER_04Oh, thank you so much. It's really great to be here. Thanks.
SPEAKER_05Let's start with language, because I feel like the terminology, occupational therapy, might be confusing in the context of college, and maybe even prevent people from understanding what you do to help college students on the spectrum. So can you decode it for us? What is it you do?
SPEAKER_04Oh, yeah. I think everyone needs it decoded. That's our the hardest thing about our profession, I think. So we define occupation, we do use it as work, and that's what most people associate occupational therapy with as work. So there are therapists who work on work skills and work in work situations. But we as occupational therapists define occupation as anything you need to do during the day. We can define occupation as getting yourself ready in the morning, going out with friends, studying, anything that you want or need to do is what we define as occupation.
SPEAKER_05And for college students on the spectrum, is what you're doing mostly executive function, coaching, strategies for success. What kind of things do you tend to do with college students?
SPEAKER_04It is a lot of executive function. All college students who are 18 to early 20s, they're still developing their brain function for a lot of executive function. So everyone struggles a little bit with executive function. But we do do a lot of executive function things like time management, prioritization, helping with students who tend to procrastinate, helping them come up with strategies to work on that. But as an occupational therapist, we do a little bit more. And I would say the best way to explain it is looking at how you structure your day and the things you want and need to get done during the day, and how you might structure your day in order to do those things. So if you really have an idea where you want to hang out with friends or you want to meet new people, but you're having trouble making connections with people or figuring out what kind of people you want to meet, then we kind of explore what you're doing on a normal day to meet people and what maybe would be good strategies for you to use to find people you like. We might practice how would you, you know, call student uh student group and find out what kind of activities they have coming up, or how do you how do you approach a classmate who you know you think is kind of cool and you want to talk to them? So we do a lot more than executive function and we do wrap it up in more about like routines and what you might really want to just do during the day.
SPEAKER_05What do you find that college students who have autism acclimate to easily uh with campus life? And what are some of the challenges?
SPEAKER_04I think that one of the biggest challenges I see is just that the campus in the college environment is just so big and sometimes overwhelming to think about where you would fit in and finding like-minded people, figuring out how to talk to your professors. I think a lot of people feel like they're like this small fish in a big pond, you know, really just struggling for a while. And so figuring out how to navigate college life. And it's not just about the academics, because I do think the academics, a lot of people come in with, well, I know I'm good at this particular subject, but maybe these that's the other stuff that's involved in college that's a little more challenging.
SPEAKER_05So in your experience, the areas of strength often tend to be existing academic skills?
SPEAKER_04Yeah, I would say, not, I mean, yeah, I would say existing academic skills, because people who go to college tend to have a desire to have a certain career, and so they're motivated to take, you know, certain kinds of classes. And the the things that get in the way sometimes is being able to navigate conversations with professors. So you might really like a professor, but you know, maybe their teaching style isn't something that's easy for you to navigate or talk to them about it. So a lot of hesitation about how to approach professors or how to approach classmates or how to how to meet new people, I think is are challenges I've seen.
SPEAKER_05That makes a lot of sense. You mentioned also coaching folks through procrastination. What's your top strategy for time management and beating back procrastination habits?
SPEAKER_04My biggest strategy for helping people with procrastination is really helping them decide why they're procrastinating. So usually it's because either you either you don't you haven't planned ahead and you don't really understand what the task is. And so you kind of just keep putting it off because you're just not not super clear on what you have to do, and you think, oh, I'll just figure it out later. And then you start figuring it out towards the end and it's due, and it becomes a bigger project than you thought. Um, some people, there's just certain things you might not want to do. So people procrastinate because like, uh, that's not that's not my top thing to do right now, so I'm just not gonna think about it. And I would say some of the strategies for procrastination that I think work, I mean, it really depends on the person a lot, but breaking down big tasks, making yourself accountable to small parts of the task along the way, um getting a buddy to help you. I think peers are really helpful. Peers can keep you accountable, can say, Hey, I I know you were planning on working on that that part of that big project you have. Did you do it? And sometimes when your friend says, Oh gosh, they know they remember and they remind you, then it does make you feel a little guilty that you didn't if you didn't do it. Um, so breaking down big tasks, making sure that you really plan ahead. A lot of times I'll have students make deadlines that are maybe a few days before. So they kind of trick their brain into getting it done before it's really due. So if they do procrastinate, they still have a little bit of a room to work.
SPEAKER_05That is very true. You didn't mention the reason I still procrastinate, which is that I have learned that it's easier to motivate myself in the last couple of moments before the deadline, and moments really look like days for me. And so I wait until I know I don't have much more time, and then I do it, and it usually works out okay. But I got scaffolded there by people who helped me figure out the optimum amount of time to plan versus time to do.
SPEAKER_04Yeah, and a lot of people do that. I think if it all goes back to whether or not the procrastination negatively impacts you or not, too. Because some people can procrastinate and it really doesn't impact them negatively, but there's a lot of people who procrastinate and they feel bad about it and they keep themselves up all night. And then so if that's the case and that's what's happening when you're procrastinating, then some of the strategies are a little more helpful. Um, that's what I've kind of discovered. I also I do a kind of fun activity with students and we we talk about their future self and how it's really hard to be mean to a friend. And so you have to treat your your yourself like a friend. And so if you start talking to yourself like you're one of your friends, you're less likely to do the things that that are kind of sabotage your success, like procrastinate. And so I have them write little letters to themselves for the semester. So at the beginning of a semester, say, okay, write a letter to your future self that may be procrastinating and tell yourself what you should be doing instead and how you might feel if you procrastinate. And it's kind of a fun activity to hear what people say about themselves or how they motivate themselves without being under pressure.
SPEAKER_05Yeah. You you mentioned the letter writing exercise. What are some other ways you have students approach a new school year, whether they're first years or or juniors or at any point in their college journey?
SPEAKER_04I so I have a I have a lot of things I use, and it probably depends partially on again on the students and what what might be happening around us. One of the big activities I do, it's called the kawa model, and kawa is Japanese for river. And so I have students a lot of times at the beginning of a term envision their life like the flow of a river. So thinking about you know all the twists and turns in the road in the river as you move through life. And there's there's things that get in the way. So there's rocks at the bottom of the river, there's things that help the river flow, you know, there's driftwood that floats along the top of the river. Um, and then the banks are what hold it in place. So those are all our support systems and stuff. So we identify like all the things that help our rivers flow, understanding that along the way we're gonna run into problems, but really trying to identify things that are helpful when when you run into a hard time. So thinking about family or friends that are more supportive, strengths that you have that could be employed when you are having hard times. So we have a lot of conversations about just the the kind of the difficulties of life. Like college is not easy, so you know you kind of have to prepare ahead for when things aren't so easy.
SPEAKER_05A lot of this advice could probably be adapted by any student listening to this podcast, but also a lot of this is extremely individualized, like you say, it depends on the student. And so it might be worth it for individual students to find their own OT. How does a student go about linking up with an OT? What's the duration of treatment? Just how much does it cost? Can you talk about that whole process for people that are now interested?
SPEAKER_04Mm-hmm. So there are OTs who are doing work with college students. Um, I can't say we're easy to find necessarily, but we are out there. There are some therapists who work on college campuses. So if you have an OT on campus, of course, then that's a resource you can use. It's like the counseling center and should be covered under some of the university, whatever covers for counseling. You know, a lot of most of the time students don't have to pay for counseling, so they don't have to also have to pay for OT if you have one on campus. Um, there are and there is insurance coverage for OT, and particularly with people who are have autism. I know that a few of the insurance companies that I know of that are, and I'm local to Ohio, um, will cover services up to age 21. This is private private pay for OT through insurance as a college student. And so for the criteria to be seen by a occupational therapist through through health insurance is usually that you have some level of difficulty with a functional task. So that's why our being brought the idea of occupation being anything you need to do during the day, it's leaves it pretty wide open for help by an occupational therapist. And most things we can tie back to academics, and so that's something that is important. And so it could be, well, I don't feel like I have enough friends as support and it influences my academics because I feel like I don't have people to you know hang out with and and study with. So, you know, a lot of OTs can can justify services through insurance if your insurance coverage covers it. And there are OTs who provide it privately as well. And I have a group of OTs, there's about 150 of us now. We're called OTU. And we're across the United States. We actually have some OTs from Ireland and one or two from the Philippines. And so we have a we have a lot of OTs in that group who work directly with college students, and so I'm happy to connect people if I can. I've found I've found college students, OT services. I've just recently had a it was a parent who contacted me from New York State, and I ended up being able to hook her up with an OT who could help her her daughter who was a student. So we do have a pretty large network and ways to get at OTs who we think would be good to work with autistic students as well.
SPEAKER_05Yeah. And is it common to have to find an OT in the state where the student is located? I know my OT friends are only licensed in certain states, for example.
SPEAKER_04Yeah, so that's why I'm limited to Ohio at the moment because I only have an Ohio license. So we are licensed providers and we hold licenses in this in states. There's a lot of telehealth at the moment that you can find therapists who have they have to follow the rules for their licensure, but a lot of states will allow you to, as long as you have this the license in the state where the person is receiving services, you can provide services. So if I had a Pennsylvania OT license, I could provide services to people in Pennsylvania.
SPEAKER_05That makes a lot of sense. Students might ask themselves, you know, if I already have my accommodations, what else can an OT do for me? It sounds like, you know, you can help with social role play, but what else?
SPEAKER_04So I think accommodations are great and I think they're very helpful for a lot of people. And some people may or may not need anything other than accommodations. It might be that you get to school and you know, you get extended time in exams or you get a re- uh testing environment that's separate from the regular classroom. Um, you could get extended assignments in in and you could be successful. I would say that people who might benefit from OT who are people who go to school and they're not really flourishing. Like they feel like, you know, there's just something missing. I feel like I'm kind of stressed out about getting to classes, I'm feeling overwhelmed when I'm around campus. I don't always know how to how to get around campus or I don't know who to go to. Um so I think if there's some misgiving about how you're managing your day, it might be worth talking to an OT. Because I know autistic students in particular may have, like you mentioned, sensory, sensory processing difficulties. And so it might be that the openness of the college environment, there may be some things in the in the environment that are help be making you dysregulated, and that there can be some strategies you can employ to to manage that or you know, change your sensory self to to make things easier for you. So I would say probably if you're using services on campus, because I know a lot of campuses have success coaches. So say you're using um accommodations, you have a success coach, maybe you're going to counseling, but there's still a piece missing. Like you still feel like, ah, but this isn't right. I feel like I should be having a an easier time at university. It's worth an OT, you know, at least talking to an OT.
SPEAKER_05So that that made me think of an example of something that I struggled with as an undergraduate that I think a lot of undergraduates on the spectrum might struggle with, which is the dining hall experience and adjusting to feeding yourself when you might have both sensory issues and perhaps a selective palate, or dietary restrictions due to allergies or GI issues. So, do you have any tips for students in that arena? Sensory accommodations that you've seen work?
SPEAKER_04Around dietary preferences in general, I probably would suggest that students figure out what's at the dining hall and just do a deep dive into what's available. So, really figuring out what's there, even if it means having a friend go in first and you know, checking it out so you don't waste your time. Um, I had a student once who was really particular about a certain kind of like we had sushi at the um at the dining hall, and he only wanted a certain kind of sushi. And it was really hard for him if they had run out of the sushi for the day, and it was really distressing to him. And so we kind of worked through um, you know, some alternates for him, then that were it still was distressing to him, but we worked through well, let's think through like if they're not if they don't have the sushi you want, then what's kind of a an okay plan B for you? Let's try out some new things. And so trying out some new things within reason has been helpful for some students. Um, some sensory issues also, you know, the dining hall is usually really loud. Sometimes it helps if students plan in their day before they might go into a really loud or chaotic environment, is to do a little bit of exercise or some heavy work will help clear. Calm down the nervous system a little bit. You know, sometimes there's some ways. I know that I did a study not long ago on test anxiety, and I did we compared cognitive behavioral strategies with sensory modulation strategies. And it was really interesting that we had the students put on a weighted backpack, like putting on a heavy backpack, like making sure you put a few extra books in your bag in the morning, like something that'll just kind of help center you. And I wasn't surprised it was effective, but it was a long-lasting impact compared to some of the more thinking strategies that we've tested.
SPEAKER_05So just so I'm clear, the outcome of that study was that the sensory modulation was as effective or more effective than the cognitive behavioral in helping the test anxiety be less.
SPEAKER_04So it was interesting that they all worked, they all worked to reduce the anxiety. It was that the sensory modulation strategies worked for a longer period of time because we did some, we took three different measures, and one was kind of far removed from the testing situation. And the last measure we took, the when they did the sensory modulation, that the stress and anxiety had stayed low compared to the cognitive behavioral strategies.
SPEAKER_05Well, that makes total intuitive sense to me. Occupational therapy, you referenced that most people know occupation is work. Is occupational therapy helpful for students who are transitioning into work? Uh, do occupational therapists work with students entering careers or helping them get ready for careers and finding the right job?
SPEAKER_04So we do work with work issues. Like there's always a career center on campus, and I think career centers are great for helping you with your resume and helping you with interviewing skills and looking for jobs. So there's some basic things that the career centers can help you with. Um, again, we would probably get more involved if you really felt like, well, I I I want to work at this company, but I'm not sure if it would be a good good fit for me. And I want to kind of understand the requirements so that I know that it's something that I could handle in terms of, you know, could be the work environment, could be the setup of the offices or the actual work itself, then that could be where we would become involved. I think a good way to think about OT is if you're using all the supports that are provided on campus, like career services, and it just again feels like there's something missing that, you know, they're not helping me quite with everything. You know, I have some things that I think the career services are understanding what I'm saying, um, then that would could be a way that OT might be able to help. I think we're really good problem solvers. And I've heard your your original interview on the podcast about thinking about neuroscience and and the body. Like we have a really strong base in neuroscience and physiology, and so we do understand like what's happening in the body and how that projects out into the real world. And so, you know, a lot of strategies will be helpful for most people, but then there's times when, you know, I don't really fit the mold for most people, so I need a little bit of extra help, and that's when OT might be helpful.
SPEAKER_05Yeah. For example, if a student is going through the Career Services Center and they really hit a stumbling block with say interview skills and their um autism really gets in the way of making that first social connection with an employer, tapping into an OT at that point could help the career counselor and the student and the OT find a way to actually help that person like through the hiring process. Because I know a lot of autistics, myself included, have had our share of difficult interviews.
SPEAKER_04Yeah, and sometimes even career services doesn't know how to tackle those topics either because they don't know enough sometimes. And it depends on the school, it depends on the people who are in those positions. There's some people in the positions that are wonderful, can really help a lot, and then it really just depends on the skill level and the comfort with helping manage those difficult topics, you know. Hey, I get into an interview and you know, I just I freeze and I don't I don't know how to get myself out of it. So, what are some strategies to do?
SPEAKER_05So, how do you know as a client if you have found a good OT? What about OTs who are on the spectrum themselves or who share that they are neuroaffirming? Can you talk about that?
SPEAKER_04Yeah, I mean, I think I think it's like any other person you might encounter, you know, if you go to a counselor or another kind of therapist, a psychologist, you really want to have a a strong connection with them. You want to make sure that they you really think they understand you, that they're listening and that they're as an OT, I want to see all OTs really take what your client says and and really take it very seriously. Like my client wants to participate in, I don't know, rowing club or something. And but not that OTs say, okay, yes, you want to do rowing, and this is I know this is important to you, so let's figure out how to do this. So making sure that the OT that you've that you've engaged in in your life, that they're actually out for your best interests, they're prioritizing your needs. Um, and I would say, you know, if you can find a neuro-affirming OT and that you feel like they understand you, then I think that, you know, it could be a really good fit.
SPEAKER_05Do you know OTs who are on the spectrum? My friend, you might know Sarah Silvagi Hernandez, the autistic OT, is one who I have advocated with in the past and worked with professionally occasionally.
SPEAKER_04I don't know her personally. I know of her, yes. And I think like a lot of a lot of people, there's a lot of OTs who are starting to identify later, especially women. And so um I we hear more and more about OTs who are identifying. And I think it's also like everything else becoming easier for people to say, hey, you know, I'm I'm autistic and you know, this is who I am. And so if you can find an OT like that, it's I think it's I think it's a great, it would be a great fit.
SPEAKER_05So as awareness has grown, like you alluded to, and also as more students with autism are going to college, how has OT changed and how is it changing?
SPEAKER_04You know, I do think that, I mean, I worked in the schools with like the elementary schools, and it it was another topic I think you've talked about in the past is about the idea of standardized developmental milestones and how that really was a focus on whether or not kids were meeting specific milestones. And I do know that there is a lot of movement away from that in general, which I I think is really good. It's good for everyone, it's good for the profession, it's good for the people we serve. Not so focused on, hey, this kid can't write. It always drove me nuts when I would have a teacher say something like, Well, they can't write their name. And I'm like, Well, maybe they don't need to write their name. We can figure out a different way to do it, you know, like in it, but it was this little checkbox that the kid had to be able to do it a certain way, and you know, and I thought I always thought it was really a disservice to kids. Um, and so now as someone who works with college students, I think that it's really nice to have such diverse students on campus and be able to really celebrate people for who they are and not have to fit everyone in a checkbox. And so I do think that OT is really trying to move that way as well. And so it's it's been nice to see.
SPEAKER_05As OT is changing and as you guys are pushing away from these older stigmatizing models, how are you managing your relationships with the universities and institutions that you work with?
SPEAKER_04So I think the universities are trying to also be more open to more diverse students and supporting students who may need the extra assistance on campus. I do think faculty may be a little farther behind. Certain faculty, I think, you know, depends where they're at in their process, whether or not they are accepting or how accepting they are, I guess it should say. Do you have tips as an OT for relating to professors? I would say as a student, it's challenging, but I think advocating for yourself, learning how to advocate is really important. Because I think, you know, the professors need to know who you are and they need to understand that you're not asking for them to change the curriculum, you know, not to change the inherent nature of the course. But the students who are advocating can be like, well, hey, I just need this this little bit of support and I can get the curriculum. I understand, I understand this. I just need a little bit of you know flexibility here. Um, so I think advocating is something that students need to learn, and I know it's hard sometimes, but getting better at advocating for yourself, I think is a really um good skill for um managing those kind of situations. I think on the faculty side, um, I mean, I think faculty a lot of times can be more flexible. I think, you know, it's it's definitely there's a lot of room for growth there as well.
SPEAKER_05Yeah, I think it's happening, but it's happening slowly. Well, thank you so much, Karen, for sharing about OT. Thank you so much for having me. So that is our show for today. Thank you so much for listening, for following us on Instagram and Facebook, and thank you especially for adding your reviews on Apple Podcasts. Our show is very specifically for students on the spectrum navigating college. And we appreciate your appreciation for Autism Goes to College. Now, as promised from the top, here are the ways to see the film. The documentary film Autism Goes to College is currently available through many channels, but the easiest way to see it today is to rent it on Vimeo On Demand, which you can access from your Apple TV or most other smart TVs by going to the Vimeo on Demand app. You can find a link on our website at www.autismgoes to college.org. The film is also available for educational use and for live and hybrid screening events. All the relevant info and links can be found on our website. Don't forget, please follow us on Instagram to stay current and consider joining our vibrant community on Facebook. Thank you for listening.
SPEAKER_07Hey, thanks for listening to Autism Goes to College. We'd love to hear from you about what you'd like to hear more about. You can find us on Instagram and Twitter at Autism GoesToCollege. Hit us up with your thoughts. Tell us what's going on in your campus and in your college life. To see the documentary film or set up a screening, check us out at our website at autismgoes to college.org.