EP42: Tips for Autistic University or College Students

Odosa Obasuyi is the founder and CEO of Autinerary, a positive, all-purpose hub for all things autism-related. Odosa is the brother of an autistic sibling, a student at the University of Toronto, and suspects he may be neurodivergent himself. He joins me for a quick chat about the ways Autinerary can help you on your autism journey — whether you're an autistic person or a sibling, parent, friend, or partner of an autistic person!

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Transcript

Kristen Hovet (00:00)
Today I'm speaking with Odosa Obasuyi, a student in computer science, computational cognitive science, and math at the University of Toronto. And he's the founder and CEO of Autinerary. But before I share our conversation, I would like to thank Homebird for buying me a coffee. If you would like to buy me a coffee, please see the link in the show notes that says buy me a coffee. And with that, please say hello to my guest for today, Odosa.

Odosa Obasuyi (00:27)
Hello, my name is Odosa Obasuyi. I am a in between third and fourth year student at U of T or University of Toronto. I'm studying computer science, math, and cog sci. And I'm also the founder and CEO of Autinerary where we're trying to create a central platform for anything autism related. The mission was based on our individual journeys as parents, siblings, autistic adults, and allies of the autism community,

where we just didn't find a lot of resources on those journeys and still see a lot of the same problems that we did around 15 years ago when many of us first started our own individual autism journeys. And so we kind of decided to do some stuff ourselves. So what we're trying to do is provide the information, services and community that we felt we would have liked to have when we were on those journeys, as well as a focus on positivity,

the anti-negative stigma that seems to be attached to autism or the autism journey a lot of the time and innovation. Innovation is a really huge thing as well. With all the buzz about like artificial intelligence, virtual reality, ChatGPT and whatnot that you hear about nowadays, innovation and autism isn't something that I'm seeing enough of, I feel. And so that's something that I'd really like to see us bring as well. And having everything in one place as well, because the sort of wild goose chase for autism services is something that I would really like to limit.

Kristen Hovet (01:53)
What are some of those services that people typically are looking for?

Odosa Obasuyi (01:57)
Just having an initial place to find information about what autism is, that has to be the start of the journey, learning about what autism is in the first place. So that's what we've turned our website into. It's supposed to be a place where anyone can learn about autism from just simply what it is, to diagnosis, to relevant services, as well as a place for people to be able to connect.

For me personally, I'm a sibling of someone who's on the spectrum. So one of the first things that we worked on was something called SibChat for siblings of autistic individuals to connect. And it's something that we're doing a bit of revamping on because we realized it was missing some, I would say, critical features to take it from what it was to what it can be.

Kristen Hovet (02:36)
Very cool. As your website mentions, one of your focuses is working to support autistic university students. What are some of the main concerns when it comes to being autistic and going to university or college?

Odosa Obasuyi (02:50)
First of all, I'd like to say that when it comes to this, I think it's just really important to say that I'm speaking from my own perspective, right? And I am not autistic. And this is something based on my experience having talked to friends that are autistic and wanting to learn more about the autistic students' university experience, of course, given what I'm working on. As I am not autistic myself, I started out with simple surveys, asking those friends about their experiences. So just...

stuff that they liked, stuff that they didn't like, stuff they thought could be done better. Basically everything I could find or everything that I found could be summed into one sentence, which is that autistic and or neurodivergent supports, and I say that because those friends that I talked to are not just autistic, there's also ADHD, OCD, a lot of co-occurring conditions with autism as well. Those supports for autistic and or neurodivergent students are more often than not

built through a non-autistic or non-neurodivergent neurotypical lens. So if you take a look at like the typical solutions that are there, which is usually the giving more time on assignments or giving more time on tests or an accessibility office where you can kind of talk about your problems sometimes, you realize that none of the solutions that are there really tackle the main problems that autistic and our neurodivergent students go through. And in particular, when I say that, it's that more often than not,

the problem isn't purely academic. This can be social or socializing issues. This can be, in particular with waitlists for diagnosis, because a lot of people find out that they are autistic in a university. So waitlists for diagnosis, to get supports, because accommodation services most of the time you can't get them without having a diagnosis. There are a lot of professors who don't understand or aren't willing to accept suggestions

sometimes from students, which can obviously make things very difficult. And kind of just the lack of a support system for autistic individuals. That's something I say with a grain of salt because I guess some, particularly with universities, the whole, or at least the goal that I get from universities is supporting independence. But I think that if a university is willing to accept someone who is autistic, I think they should at the very least know what that means, right?

Like I don't think you should be kind of just accepting people for accepting sake. I think that if you're going to accept someone that you know has this potential, but has certain needs, then there should be that support system in place to work with those needs. That way the person can focus on unlocking that potential, right? Like I think that's why universities are there, which is unlocking people's potential. These are, I guess, just some of the issues that need to be tackled. There's a very long list.

I think that a vast majority of them can and or could have been solved by just listening to students. It sounds very simple, but I really do think that just by listening to students, just talking to people and trying to understand the problem from their perspective, it's from there that you can really get meaningful solutions. Literally just off of that alone and the other things that I mentioned, I tried campaigning, like just tagging the university that I go to and saying, Hey,

U of T, can we talk about your services? It's really difficult, in all honesty. It's something that I think, as I got more comfortable with, I realized that, while I was happy that happened, more needed to be done. And the progress that I wanted to see wasn't being made. But that is why we ended up making something called the 70 % project, which is called that because of a very ridiculous statistic that

really highlights why these problems are such a huge thing that need to be tackled, which is that 70 %, and it's actually more than that, 70 % is kind of just like the number that was highlighted the most in research, but 70 % of autistic students don't graduate post-secondary education. And I kind of just want to pause there to reflect on that number because that's a crazy number. That means of the number of students that are going into university, only 30 % are coming out with degrees. Like that's absolutely insane.

The goal of this is to reduce that number. There's lots of different partnerships and initiatives to unpack in this, and it's very new. We just posted about it in January. We created an autism and or neurodivergent student group alliance with seven amazing clubs and organizations from different universities across Canada, of course, including us. And also a very big update to our website, which is coming soon,

with the best research-backed advice and associated resources that we could find, into a sort of guide for autistic university students and college students as well. And we're trying to expand because someone brought it to our attention, a very important point: university and college are not the only two forms of post-secondary, especially when it comes to autistic adults, right, there are a lot of different pathways. It's something that will definitely take a lot of time to properly tackle.

It's something that I'm really passionate about pursuing long-term. And I really hope that, from that, we can make the resource that makes university and post-secondary life, I guess, not feel like battling yourself to fit in for autistic students.

Kristen Hovet (08:12)
Interesting. I'm curious if you know the number for how many non-autistics don't graduate, just out of curiosity.

Odosa Obasuyi (08:20)
It's around 60 % of neurotypicals graduating and 40 % not, which that's still not great when you think about it, but a lot better than the 30 % graduating and 70 % not. Like that is a complete imbalance. And again, going off the fact that this isn't due to academic struggles, like in fact, a vast majority of the time it isn't due to academic struggles, right? Like that just means that it's literally take time to put together the right resources and you will see people succeed. Like that number should switch relatively fast. So it's really about taking the time to make those resources happen.

Kristen Hovet (09:00)
Right. I remember when I was in university, I wasn't diagnosed yet, and hard things would happen and sort of cloud my entire experience. And as an undiagnosed autistic person, I had no idea that that's what was happening. Like I thought, you know, I just wasn't able to handle it. Right. And so I took a huge, long break from university and thankfully I went back, but I know a lot of people don't. I would have really benefited from something

like that. Well, first of all, knowing about autism, I think more people are getting properly diagnosed when they should be. But anyway, I'm really excited about those kind of initiatives for sure. And I know for me as well, the sensory issues were huge, like having the big bright lecture halls and things like that. And yeah, it was so hard. It's hard for everyone going through university, I think.

You know, my energy load was depleted so much faster than a neurotypical or non-autistic person. So what are some of the things that people can do for sensory issues, for social issues?

Odosa Obasuyi (10:07)
Yeah, and I'm so happy you mentioned sensory issues and this is why, I am not diagnosed with anything but I think at this point I know I'm probably something because like, with me, it's so weird. I didn't feel like I had a lot of stuff and then, all of a sudden it's like out of nowhere, all of these things start hitting me left, right, and center, and sensory was a very huge thing. I all of a sudden cannot deal with light

which is why I had that big reaction when you said the bright lecture hall. I don't know why it just doesn't work for me anymore. Every sense that I have, I feel actually, has been dialed to like 10. So figuring out how to work with that, that's why I had to get these headphones first and foremost, at least with noise. That was a thing as well. No, I think anything sensory is really just, I would say it's not there. And that's something that I would really like to see change.

It's actually one of the first things I would like us to try to advocate for, which is having genuine sensory spots on campus, like having a map of those places. If those places don't exist, trying to at least create them at different campuses. That'll be its own process, hopefully, to try to figure out how to make them. But I think at the very least, having a place to sit and study that you can reliably go to every time when you need to study, I think that's the minimum to succeed.

And it's, as you said, it's stuff like that, where you know that like, you can have a big test, and you're not even going to find that place that you need to study. Mentally, it can really, really defeat you. And I am a very strong believer that mentality is like, if there's a superpower in this world, if this is like an anime or TV show, mentality is definitely like the superpower.

Once you're not mentally there, you can go out like that. What was the other thing you mentioned? You mentioned two things, I think.

Kristen Hovet (12:02)
Just like different accommodations. I know after the fact, after I finished my bachelor's degree, I learned about autism and just different accommodations. So things like taking tests in different locations. I think now there's more concern about the built environment. So, even before universities or colleges are built, they're taking into account neurodiversity and different things like paying attention to acoustics, color palettes, obviously lighting is one. Yeah, just different accommodations. So what are some things that universities or colleges can offer students? Social as well.

Odosa Obasuyi (12:43)
That was what it was. Social, I think, is probably the most difficult to properly tackle. If there is at least one solution that should be there, it should be something that tackles those social issues that are there. I think that that's something that, when you're going to university, you're expecting to develop critical life skills. I would like to think that that would be something where autistic people can have something where they can work on that,

you know, like week by week. Of course with university, it's very tough. U of T I can speak to in particular. It's like every week there's like another, just whatever. But at least having maybe a place where, I think, 30 minutes a week where you can at least just work on developing those social skills, whether that's with other autistic individuals or with people who at least know what the experience was like, like other siblings maybe. So,

creating that place where that can happen. I think that that would be a really big step. diagnosis, that's what I was forgetting. There absolutely has to be something for people who are undiagnosed. If you've seen like the waitlists, I can in particular speak to BC. Like BC is, I've heard very, very bad things about BC for waitlists for diagnosis. I would say at least having something where undiagnosed autistic individuals can get that diagnosis fast,

that's like step zero, that should already be in place. And if it's not offered by universities, which I think is understandable, there should at least be partnerships with groups that are outside. I would say those two, the social skill development as well as the on-campus diagnosis, those are two things that would be really critical.

Kristen Hovet (14:28)
When an autistic person is considering selecting a college or university to attend, what are some things they should consider or their families or siblings should consider?

Odosa Obasuyi (14:40)
If you don't mind, I actually want to start with something that's not just university, but like any level of education. And this has come from, I think, every parent that I've talked to: find that one or two good teachers. I know it's not easy. I know it's limited to where you are, which school you're going to, et cetera. But for, at least for us and for the many that I've talked to, it was those one or two teachers that truly made a difference.

Back to the original question and reiterating again, just because of how important it is, autism diagnosis is absolutely number one. As you mentioned, like the vast majority of resources are accommodations. They aren't available if you don't have that diagnosis or if you've been diagnosed as autistic, already dig that up because I noticed a lot of times they ask you to kind of find that again and have that available. They've in some cases asked to, and this one kind of annoyed me a little bit,

asked to renew your diagnosis, which it's a lifelong thing, right? I don't understand how you can ask to renew a diagnosis for autism, but for some reason, I guess that happens sometimes. I've seen it more than once. Regardless, if you are autistic and you got the diagnosis, dig that up. If you are suspecting you're autistic, get that before you start, because wait times are very long and the last thing you want is to be dealing with that

at the same time as everything else university and college or post-secondary already has in stake for you. And I'll say that once you do have the diagnosis and acceptance letter as well, find the accessibility office that is there ASAP and immediately ask for accommodations. So as I mentioned, like that gets the whole additional time on assignments and sometimes on tests. Actually it's the other way around. It's usually on tests and then sometimes on assignments. Do I think that's the best solution? Absolutely not.

I think that that doesn't attack the root cause of the issues that come with being autistic and being in university, but it's a start and it's all that's there. So at the very least do that. It can help. Going off of my personal experience and or research, I would say that interests is another thing. I think a lot of people go into university or college without knowing what they want to do, even, I guess, with what you want to study, find your interests now.

In particular for autism, because one big strength of autism and related neurodivergent conditions, is a very burning passion for things that is on a very different level in comparison to what's typical. Usually it's called special interests. I call it burning passions. That's just what I call it. But find that or find those, because it can be more than one, and find opportunities related to that.

So talk to professors, find research opportunities, pursue passion projects, because you never know where they could lead to. And again, going off of my own experiences, I feel like finding kind of just like a buddy, whether that's someone who is autistic, who is older, or a sibling who has experience, or someone who kind of just understands stuff. Finding at least that one person or one or two people that you can relate to

is huge. In that aspect, I think clubs are always really good. There's a lot more autism and neurodivergent clubs nowadays. And you can, of course, find stuff related to that passion, which is why I mentioned that. Join clubs if you can. Career is also huge. A lot of the times in university or college, it's like you're going in there to then transition into a career after, right? And a very good quote that I

got from someone is that you find your career, it doesn't find you. And that is, again, why finding your passions early matters. So going back to that point, find your passion, find your interests. But with anything career, this is not just like for anyone who is autistic. This is really for anyone. Go to networking events. I cannot stress enough how much networking events have saved me, have saved basically every friend I had because they either told me or I told them to go to networking events.

Half the time it's from there that you end up getting that internship or that co-op or that project or that research that ends up making the difference for you. Of course, I understand it can be very uncomfortable. For me, it was terrifying. But I am very, very grateful that I did do that and I faced that discomfort. I found a lot of other people who were also uncomfortable, which made it better. And mental health, mental health, mental health, mental health.

I cannot stress mental health enough as someone who did not believe that mental health was an important thing before they went into university. I think I kind of just like dive headfirst into a lot of stuff and just go with the flow. You can only do that so much. And also be excited because you're going to a whole new world where you can become who you want to become. Accept it if you're nervous and never try to reject those emotions. If you're nervous, accept that, but don't let that stop you from being excited. Don't let that stop you from all of these steps

and pushing yourself to learn what you want to learn and to meet who you want to meet and to be who you want to be.

Kristen Hovet (19:55)
Love it. Thank you. Two questions from what you were saying. First of all, I know a lot of autistic people don't quite know what they want to major in. Should they wait until they know or should they just dive right in?

Odosa Obasuyi (20:07)
I would like to say wait, waiting and finding it, but taking it with a pinch of salt in that everyone's situation is different. But I would absolutely say that knowing what you want to do and knowing why you're there, it makes a difference, it really, really does. I would say wait pretty confidently, but again, everyone's situation is different.

Kristen Hovet (20:27)
The other question that came up is networking. So when I hear that, I kind of, my whole body is like, ahhh! Are there like, since I guess, when I was in school, I imagine that there's probably a lot of online networking. Is that something that you've seen kind of take off?

Odosa Obasuyi (20:47)
I don't know if I can say so. I didn't do anything online for networking. So, while I would assume there's definitely stuff of that type, at least for me in person is what I usually see. And I am right with you in that, even to this day, I just don't, like people are... people can be tough sometimes. And

at least for me, I find that once I start to talk to people that it's like, oh wow, talking, this is actually not so bad. I guess it also depends on what you're talking about, right? Like realistically, if I try to have just a regular conversation, I will break down within like two seconds. It's just not for me. But if I talk about something I'm passionate about, I can be here for the next three hours.

Kristen Hovet (21:31)
For people who are wanting to get involved with Autinerary, what are the best ways for them to get involved?

Odosa Obasuyi (21:37)
Socials, we have about just about everything. We have TikTok, Instagram, Facebook, LinkedIn, YouTube now. And YouTube, I'm gonna do a little self plug, which is that we did like a new challenge video where we gave away $1,000 to raise autism awareness in a nice little challenge. In particular, I would really like to highlight TikTok, Instagram, and Facebook as over this and next month, we're gonna be launching by far the biggest thing we've done yet, which is a campaign

called the Autism Is campaign. The reason we're doing that is because there's a lot of stigma around autism. So we started asking people just what does autism mean to you? It was really inspired by that question and the answers we got to it and the stigma around the word autism that we decided to kind of show the world what autism means to all of us through this campaign. And we really want to use this and particularly use positivity as well as truth

to redefine that stigma around there from the mouths of people who are actually on the autism journey. So this is those who are autistic themselves, as well as parents, siblings, but also in direct relationships. I feel like that's not given enough attention, as well as siblings. We are really firm believers that, with that positivity, promoting that and the truth around the autism journey,

we can really redefine that positive air around autism as well as amplify voices within the autism community too. I have a shirt that we're wearing. We're launching a collection. So this one says, autism is a story.

That is our main one as well as our original one, which is autism is normal. That was the first one that we came up with. And we have a bunch of other ones, which you can find at shop.autinerary.ca. And this is also with our campaign that we're trying to do, asking five questions about the autism journey. So that first one that we asked, which is what does autism mean to you is question one. The rest of them I'm gonna kind of leave so they're not spoiled. And we have a research project that's tied to this as well, where we hope to identify common points within the autism journey to enable autism-centered organizations, medical organizations, governments, educational institutions, et cetera, to create better solutions for the autism community.

Kristen Hovet (24:04)
A huge thank you to Odosa for being my guest on The Other Autism podcast. And that's all I have for you today. Thank you so much for being here. Until next time, bye.