Specialized program for Marquette undergraduates with autism disorders gifted $450,000, set to launch fall 2019

Weeks after DJ Castillo started his freshman year at Marquette University, he stopped eating in the dining hall. It was too much to handle.

This wasn't the first time he felt overwhelmed in college, and it wasn't because of academics. DJ was a bright kid — he graduated high school with just shy of a 4.0 GPA and was accepted to Marquette's honors program.  

DJ has Asperger's syndrome. It's not always obvious, and his mother, Kelli Castillo, said he just comes off as shy. But he struggled adjusting to social aspects of college in ways that many of his peers did not. 

DJ graduated in 2016, but was not the first, nor the last, student on the autism spectrum to go through Marquette. Students like DJ are the target group for a new program called On Your Marq, developed to help undergraduates on the spectrum navigate both the social and academic areas of college.

On Your Marq was recently funded by a $450,000 gift from donors John and Kate Miller and will enroll its first members in fall 2019. 

Remedying a lack of specialized resources

When her son was 2,000 miles away living off of cereal bars and Wheat Thins, Kelli Castillo felt helpless. DJ was calling home almost every day, but couldn't bring himself to reach out to anyone on campus, trapped by the same crippling fear that kept him from the dining hall.

“He has the tools but he won't make the move," Kelli Castillo said. “The kids are reaching out to the parents, they’re not reaching out to the school."

DJ was registered with the Office of Disability Services. But at the time there was no program like On Your Marq where someone would check in with him regularly to make sure everything was OK. 

After trying several contacts, Kelli Castillo made a desperate phone call to associate psychology professor Amy Van Hecke. 

There was little Van Hecke could do to help, but she tried the best she could. She sent a student to bring food to DJ. She suggested Kelli Castillo look into a different dorm option for her son, somewhere quieter and with fewer parties.

“Even though he was a bright kid, he felt like he had no other options," Van Hecke said. 

She knew DJ wasn't the only one struggling, and Van Hecke had gotten frantic phone calls like Kelli Castillo's in the past. 

Along with her colleagues, Wendy Krueger and Mary Carlson, Van Hecke had been developing On Your Marq for several years before funding came along. 

Most college students with autism are high-functioning and do just fine academically, but can't find personalized resources to help with the social stuff. Van Hecke found herself turning prospective students away who wanted to come to Marquette but had a disability. 

“You might have to look into other options,” Van Hecke would tell them. Even though Marquette has an Office of Disability Services and a social skills program for high school students, there was nothing specific for undergraduates.

Van Hecke saw a need to establish long-term, specialized resources at Marquette — something aimed at specifically helping students on the autism spectrum adjust to college life outside the classroom. 

In addition to regular undergraduate courses, students will be enrolled in social skills classes through the PEERS program, which is already in place at Marquette for K-12 students. They'll also be paired with a coach and a peer mentor for one-on-one support. The goal is to get these students comfortably integrated into the Marquette community, academically as well as socially. 

Peer mentoring works "kind of like a buddy program," Van Hecke said. Undergraduate volunteers will be paired with one participant to show them the ropes on and off campus — from eating lunch in the cafeteria to using the bus to get around town. Ideally, they will attend social skills classes with their mentee so that they can be on the same page with what they are learning and how they are adjusting. 

One of the few nationally

The program is one of only a few throughout the country, Van Hecke said. In-school resources for students with autism are required by law for K-12 schooling, but colleges often lack resources for those students looking to pursue higher education. 

Van Hecke said many of these incoming students often have a lifetime of support in place “and then it just stops. Colleges really aren’t set up to handle that.”  

Kelli Castillo said DJ was comfortable in high school, doing well in school and enjoying time in the theater group. On the side, he took social skills classes. 

“We don’t ever think of him as this kid with Asperger's. But there are many times when it just comes and hits us in the face," Kelli Castillo said. "I was blind to think that the comfort level he had in high school would continue in college.”

The selection process for On Your Marq is something that still needs to be sorted out, and Van Hecke doesn't want to generalize what the first group of participants will be like. A director for the program will be hired between now and next fall, and they will organize interviews for students who have already been accepted to Marquette.

"This first year we just want to keep it small," Van Hecke said. "This is our learning group, we want to make sure what we're doing is effective."

The team is still deciding how to handle a potential influx of applicants. Right now they are expecting to enroll only nine or 10 students, with plans to gradually expand that number to 30 or 40.

ARCHIVE: Marquette University program helping kids with autism

A surprise donation

Out of the blue, the Millers called Marquette and asked if they could do something similar to the Kelly Autism Program at Western Kentucky University, one of the few autism-specific undergraduate programs in the country.   

“The timing was uncanny,” said Krueger, an associate professor in the College of Health Sciences. “We have the support of people across departments, across the university who also saw this need, and community partners as well.”

This is not the first time the Millers have invested in a program at Marquette. They are among the largest donors for Marquette's Urban Scholars program, which offers full-tuition scholarships to students from low-income families. Donating to On Your Marq was something personal as well, as the Millers have a close relative with Asperger's.

In addition to tuition, the program will cost about $6,000 per year for each student enrolled. Van Hecke said some of the grant money will be used to offer scholarships. Almost all of the funds go to training and paying personnel, as the program director and graduate student coaches will receive a regular salary. 

"We looked at other programs and we realized that (price) was medium to low," Van Hecke said. Comparably, the Kelly Autism Program is $5,000 per year.

What makes this program unique is its ability to help students with social struggles while they earn a degree — something that many autism-focused postsecondary education programs don't do. Many target only the social hurdles and don't help participants work toward an accredited degree.

Students on the spectrum

Carlson, an associate education professor, said it is difficult to tell how many students on the spectrum are currently at Marquette. Many who come to college decide not to report it, disregarding their diagnosis because they don't want to be labeled by it.

But these students still struggle. Occasionally, Carlson will have a student come to her in the middle of the semester admitting they have an autism diagnosis and asking for help. 

Upsets in one’s daily routine can become a sticking point to those with autism.

While DJ was still at Marquette, a group of rowdy kids came home late one night and tore the name tags off residents' doors in McCormick Hall. They puked in the sinks in the communal bathroom. 

For those with Asperger's, there's an aspect of hyperfocus that comes with the disorder. Underage drinking was something that unnerved DJ. If one person was doing it, it meant a thousand people were doing it.

He was thrown off, and called his mom in distress.

“It dysregulates them, it ruins their routine, how they know to be successful,” Carlson said. 

Though a main facet of the program is to educate the students on how to adjust, another goal is to teach students and faculty how to interact with people on the spectrum.

Carlson observed this disconnect from her experience as a former special education teacher in the K-12 school system. Sometimes she would hear talk of "funny kids" and later realized these students were on the spectrum, to the misunderstanding of their teachers. 

“They don’t understand that there is something more going on there," Carlson said.

By integrating these students into everyday campus life, the hope is that peers and teachers will learn to become more understanding. So far, the reaction from students in Krueger's classes has been positive. 

She has already heard several students express interest in joining the peer mentorship program. 

“I remember in class when we announced it, there were cheers,” Krueger said. “We had awakened them to the need for services like this.”

Jennifer Walter can be reached at JWalter@gannett.com or on Twitter.