University of Maine’s Autism program

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Roughly one in 44 U.S. children are on the autism spectrum, according to the Centers for Disease Control and Prevention. A third of them are college bound, research suggests.

Higher education officials need to recognize how many prospective students this group represents and be ready to support them, according to Sarah Howorth, professor of special education at the University of Maine.

In 2019, Howorth led the pilot for the University of Maine’s Step Up to College, a program meant to model how colleges can effectively support students with autism spectrum disorder. During that five-week session, she incorporated the Program for the Education and Enrichment of Relational Skills, or PEERS, a social skills program for neurodivergent students developed by Elizabeth Laugeson at the University of California, Los Angeles.

The program became remote when the COVID-19 pandemic hit but is expected to return to in-person instruction this summer.

Howorth shared some of the unique challenges students with autism face, how accessibility offices can help and why she believes colleges need to incorporate disability into their diversity, equity and inclusion plans.

HIGHER ED DIVE: When starting college, what kind of challenges come up for first-year students on the autism spectrum?
SARAH HOWORTH: When you’re coming into a new social environment — like a college campus — that’s a challenging transition for typical young adults. For college students on the autism spectrum, that can be even more difficult to negotiate. A big defining feature of autism is social communication deficits. You have all new types of relationships, and you may not be used to having to independently seek out your professor.

Oftentimes in high school, teachers tend to lead students with organizational skills and whatnot. Students with autism might have problems with executive functioning or organizational skills, so it can be hard for them to keep track of where to be when.

What did the 2019 pilot for the Step Up to College program entail?
Juniors and seniors in high school who were on the autism spectrum and were contemplating attending college came to the university for five weeks in the summer. They attended a class with other college students attending the summer session and lived in the dorms as a sort of tryout, to see if it was a good fit for them.

As part of that, I did a very adaptive version of PEERS where we just talked about conversational skills, the basics of making friendships and getting along with your professors. There’s so much to cover, like how to trade information, how to enter and exit a conversation, and how to find common interests with people.

They also took a course, a kind of College 101, with all those types of things that really don’t necessarily get discussed. For example, you have to take care of your own healthcare at college. If you’re feeling sick, you have to go and find the doctor’s office on campus.

How did the program adapt once COVID-19 hit?
We became entirely remote. Anecdotally, I noticed when we were running our groups on Zoom, the students were not as engaged. Most of them were at home, so the whole experience of being away from home and having to handle things on your own didn’t really work.

We had also had parents hovering or sending emails to us about homework and reading. As a parent, I completely understand, you want your kids to be successful. But that misses the point of the program. Thankfully, we’re going back in person with the Step Up program this summer.

What can accessibility offices on campuses without specialized programs like Step Up do to support students on the spectrum?

There’s lots of room for improvement on college campuses. The typical accommodations that are offered, like note takers, closed captioning or extended time on tests, are not necessarily what students with autism need.

On the bright side, when I have spoken to our students’ accessibility service, they’ve seen a large increase in the number of students with autism not just coming to university but asking for support. That’s a testament to how we as a society have enabled them to be self-advocates.

If you think of the social skills involved in finding the student accessibility services on campus and talking to a stranger about your challenges, that’s brave.

On the other hand, it can be hard to fulfill their requests without modifying the curriculum. As an example, our student accessibility services director told me that students with autism sometimes ask to be excluded from group work. That’s not necessarily an accommodation, because a lot of college courses are more interactive. Plus you have internships and job placements. Life is honestly one big group experience.

So what could help in this situation is giving those students somebody to sit down with and unpack a social situation that happened, so they can ask questions like, “What could have been done differently?” That’s not necessarily counseling, because it’s not that they are having mental health issues. It’s just that they are having interpersonal social communication issues.

Are there misconceptions that you think impede colleges from seeing kids with autism as prospective students?
There are so many myths and misunderstandings out there about what a person with autism is like. Autism is not necessarily associated with cognitive impairment. I have a 16-year-old son who is on the autism spectrum. He is also very intelligent, and he’s definitely college bound. There’s a lot of kids out there like him on the autism spectrum.

Individuals on the spectrum bring a lot to communities, whether that be university campuses, or high schools or businesses. Oftentimes, we focus on the challenges they face, but I think they have many, many more strengths than challenges.

People talk about value added — having diverse people with diverse ways of thinking on college campuses and in different careers is always positive.

What advice would you give college leaders who are considering how to make their institution more welcoming to neurodivergent students?

A lot of universities are now focusing on diversity, equity and inclusion, and they need to really prioritize disability accessibility as part of that conversation. To this day, there are many antiquated buildings on college campuses that are just not physically accessible. That should be the bare minimum.

If we can’t make our colleges welcoming places for diverse people of all abilities and backgrounds, that upholds the idea that education is exclusive and not everybody gets to go to university.

Look at things from a Universal Design for Learning perspective. The things that you offer for students with autism on college campuses, like peer mentors, will help all students.