Sean Culkin was diagnosed with autism as a young boy. With support and help, he coped socially and emotionally through his childhood and teenage years — until he graduated from high school.
“When I hit college, my life changed. Structure couldn’t be provided by my family and other groups I had known for years,” said Culkin, 23, of Rockville Centre. “I had to find it myself, and that’s when everything went downhill for me.”
He left the first university he attended just before he was to be expelled.
“I didn’t think I could ever bounce back. I thought being hit down that hard that early on was going to hurt me forever,” he said.
When he came back home to Long Island, Culkin enrolled in Adelphi University, where he joined a unique program designed to ease the transition to college for students on the autism spectrum and those with other neurosocial disorders. While in the Bridges to Adelphi Program, Culkin received one-on-one academic, social and career support services.
Ten years ago, the program began as a pilot project with a $50,000 one-year grant and three students. It has since grown to include more than 100 Adelphi students — and has a national reputation as one of the few programs of its kind to offer such comprehensive support to the growing population of college students with autism.
Over the past five years, the program boasts a 96 percent retention rate, keeping their students enrolled at Adelphi at a higher rate than the rest of the general university population.
“Back in 2007, we knew there would be these students who would fall through the cracks,” said Mitchell Nagler, director of the Bridges to Adelphi Program. “Now the goal is to get them into a meaningful career in the area of their study and get paid competitive wages so they can live independent, successful lives.”
Educating students with disabilities is complex and often underfunded, but private and public colleges are beginning to invest in support programs and services to enhance the campus experience beyond the accommodations mandated by the Americans With Disabilities Act. People with autism, or autism spectrum disorder, can have a broad range of social challenges, including repetitive behaviors, speech and nonverbal communication.
Nationally, the Centers for Disease Control and Prevention estimates 1 in 68 children is on the autism spectrum.
Awareness, research and screening for autism in very young children ballooned in the past two decades. Many of the students identified benefited from early interventions and are coming of age now, experts say.
While the data are limited on how many students with autism attend four-year institutions, experts in the field say it has always been more common for these students to attend technical, vocational or community colleges — if they seek postsecondary education at all. Because they often have social difficulties, everything from making new friends, joining clubs, approaching professors and even asking for help from the campus Office of Disability Services poses greater challenges.
About one-third of students on the autism spectrum go on to more schooling after high school, but about 80 percent drop out of their postsecondary education, said Dave Kearon of Hauppauge, director of adult services at Manhattan-based Autism Speaks, one of the largest autism advocacy organizations in the nation.
“There’s a very big difference in the services and support you receive in K to 12 and what’s offered in college,” said Kearon, referring to an individualized education program, commonly known as an IEP, that is developed for students in elementary and secondary schools. With an IEP, mandated by federal law, parents work with educators to provide special support to their students in the school.
“There is none of that kind of personal approach in college,” Kearon said. “The other thing is, it totally depends on the individual in college to self-advocate. That’s a huge burden, because by the definition of autism many people struggle with communication and social interaction and aren’t strong advocates for their own needs.”
Kearon said transition planning during the high school years to prepare for college is critical.
In addition to Adelphi, a handful of colleges across the country routinely show up on college ranking lists as being rated the best for students with autism, including Syracuse University; Defiance College and Kent State University, both in Ohio; Fairleigh Dickinson University in New Jersey; Drexel University in Philadelphia; the University of Michigan; and the University of Connecticut.
Students at these schools commonly have mentoring programs, social events, scholarships, special housing options, personalized fitness programs and daily or weekly meetings with professional staff who help them manage their time and train them to self-advocate.
“We need to start investing in and prioritizing this challenging population,” said Matthew Lerner, assistant professor in clinical psychology at Stony Brook University. “It’s not only best practice, but it is economically smart. Frankly, it would cost more if a student interrupts his/her education or needs social services.”
Lerner said because such intensive support services aren’t mandated in college — and many students don’t ask for them — it isn’t always easy for campus officials to know the prevalence of students with autism spectrum disorder on their campuses.
With limited resources in the nation’s higher education system, creating and maintaining such costly programs is challenging. Student financial aid, grants and scholarships often are not enough to cover the expenses, which leads to passing along of the cost to the students and their families.
The Bridges to Adelphi Program, for example, charges a fee of $4,100 per semester on top of the university’s annual tuition of $34,000. University officials say it is factored into the formula when students apply for federal financial aid.
The attention to the needs of this complex and uniquely intellectual group has shown positive and productive outcomes.
Culkin, the student from Rockville Centre, graduated last May with a bachelor of science degree in biology and currently works as a disease researcher at Northwell Health. Now, he encourages others.
“Investment in people on the autism spectrum and with other disorders isn’t a waste of time and isn’t just made to push them up to being a standard, average person,” Culkin said. “These are people who can truly succeed when given the right opportunities.”