This is the third in a series of articles, which first appeared in iancommunity.org, examining the research and reality of the transition to adulthood, with advice from experts who have studied the process and young adults who have lived it.
Elizabeth Cuff is a computer whiz and talented artist, but she decided to leave college after just one semester. It wasn’t the work that stumped her but rather decoding what professors wanted. Liz has Asperger’s syndrome, and though she got some “accommodations” from the college, “it was not what I was expecting,” she says. “There wasn’t enough support, like I was used to in high school.”
She had trouble asking teachers for help when they looked busy, and she had to wait to get answers to questions. She found the instructions for some assignments baffling.
Many U.S. students struggle to adjust to the challenges of college: dormitory living, sudden independence, rigorous classes and a new social world. But for people with autism spectrum disorder (ASD), the transition can be more still more abrupt and dramatic.
The individualized education programs (IEPs) that helped students from elementary through high school disappear in college. Their parents are no longer legally able, or welcome, to advocate for them. And their struggles with communication, organization and interpreting social nuances can multiply exponentially in college, away from the watchful eyes and structured world of parents, principals and special education teachers.
Researchers have found that after young adults with ASD leave high school, they have low rates of employment and education. They are less likely to be employed than young adults with an intellectual disability, a learning disability or a speech/language impairment. More than half of the youth with ASD have no job and no school participation in the first two years after high school.1
The picture improves with time. Almost 35 percent of the group the researchers studied attended college and 55 percent held a paying job within the first six years after receiving a high school diploma or certificate. Still, most students with ASD either don’t apply to college, don’t get admitted, or don’t stay in college.2,3
Many people with autism are capable of earning a college degree but require a range of supports to help them succeed.4 As Cuff found, however, the supports available in most colleges differ radically from what’s available in high schools. And those college supports may not address some of the particular needs of students on the spectrum.
HIGH SCHOOL VS. COLLEGE SUPPORTS FOR STUDENTS WITH DISABILITIES
Under the U.S. Individuals with Disabilities Education Act, a free and appropriate public education is a right and an entitlement from pre-kindergarten through grade 12. Schools are empowered to adopt changes that help a student learn and succeed, including changes to the curriculum and testing. But the rules of the game change after high school. The focus shifts from student success to preventing discrimination.
Colleges and universities that accept federal money have to provide only “reasonable” accommodations to students with disabilities, and also only accommodations that do not fundamentally change the requirements of their programs.
Such reasonable accommodations often include extended time on tests, a testing room free of distractions, sign language interpreters for the deaf and use of a note taker or recorder for class notes.5,6 Colleges do not have to provide individual tutoring, although some, particularly two-year schools, may choose to offer it.
“Under the Americans with Disabilities Act, higher education is a privilege,” says Ernst O. VanBergeijk, associate dean and executive director of the Vocational Independence Program (VIP) at New York Institute of Technology. “The colleges only have to make accommodations to level the playing field and so they don’t discriminate against the person. But the student must be otherwise qualified,” he says.
Like Cuff, Kerry Magro discovered that college involved new challenges for students on the spectrum. “When I got to college, I found out on the first day of orientation that there aren’t IEPs. That was the biggest challenge, to go from IEPs to ‘reasonable accommodations’ and having to advocate for yourself,” says Magro, who has received bachelor’s and master’s degrees from Seton Hall University in New Jersey.
A COLLEGE NECESSITY: SELF-ADVOCACY FOR STUDENTS WITH AUTISM
Unlike high schools, colleges require students with autism to ask for what they need. Students must provide proof of their disability and request accommodations through a disability services office.6 In many cases, they also must notify their professors of their needs. “I would have to do the same process again and again for each new professor: I would have to disclose my disability and make them sign a form, and work with them to make sure I got the accommodations I needed,” Magro recalls.
Asking for help — a vital skill for adulthood — can be difficult for those on the spectrum who struggle with social and communication skills. Fortunately for Magro, he had gained experience in public speaking by participating in clubs and theater in high school. “That made self-advocacy easier for me than for some of my peers,” he says.
Some students may not want to disclose their disability. One mother of a student at a selective Northeastern university says of her son, “He’s reluctant to say, ‘I’ve got Asperger’s, and I have trouble with communication.’ He wants to be like everyone else.” Unfortunately, that led to an academic problem, says his mother, a participant in the Simons Simplex Collection, a SFARI-funded autism research project that preceded SPARK.
Parents who were used to being their child’s advocate in high school special education meetings should know that college representatives probably will not talk to them without their child’s permission. If a student runs into academic problems, his parents will not be the first to know. “When your child goes off to college, you are out of the loop,” the mother says. “It’s tough for the parents.”
To help prepare students for college, parents should gradually give them more responsibility. For example, they shouldn’t always rescue them when they miss due dates or forget materials they need for school at home, says an article in a publication for school psychologists. “Students need self-knowledge in order to understand what kind of weaknesses they will have to account for in the unstructured world of college,” it advises.5
NEEDED: AN “INTERPRETER OF THE SOCIAL WORLD” FOR STUDENTS WITH ASD
Colleges and universities are used to providing accommodations to students with learning or physical disabilities, but students with ASD often have needs that extend beyond the classroom, VanBergeijk says.
“If you send a person to college with a hearing impairment, you provide an interpreter of the hearing world, but our people on the spectrum need an interpreter of the social world,” he explains. “The biggest issue is not academics. It’s navigating the social environment and having the independent living skills necessary to be away at college.”
A student may be accused of stalking because he doesn’t know how to show his interest in a potential date appropriately. He may irritate professors by interrupting and correcting them. Or he may become upset if someone sits in “his spot,” VanBergeijk says. The student may become a target. VanBergeijk says he knows one student with ASD who left an Ivy League university because of bullying in the dormitory.
Students may need special accommodations for dorm living, such as a single room and lighting that doesn’t cause sensory problems. Whether colleges can provide that is “hit or miss,” VanBergeijk says. Colleges may interpret the U.S. Americans with Disabilities Act differently, and their attempts to comply may be affected by their size, budget and mission, he says.
Magro, 26, says he had a “disability single” — a single room for students with a disability — as a freshman. He served as a resident advisor in his sophomore and junior years, which afforded him his own dorm room.
His freshman year was the hardest, as he moved from a tiny high school to a much larger university. “It was a rough transition to learn how to get along with other people and how to meet other people,” he says. “One of the big things that helped me was asking questions, and really working on adjusting to college life by keeping in touch with family and close friends from home,” he says.
He also went public with his diagnosis. He gave a presentation on autism in class, and at the end, he told his classmates that he was on the spectrum, diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified at age 4. “For the most part, people were warm and welcoming,” says Magro, now an Autism Speaks staffer, motivational speaker, and author.
An article by VanBergeijk and researchers Ami Klin and Fred Volkmar recommends that colleges offer social skills groups, counseling, vocational training and life coaching to students with ASD. The article also encourages students to take community college courses while still in high school.4
MORE OPTIONS: COMMUNITY COLLEGES AND AUTISM PROGRAMS
In fact, community colleges are a popular option for postsecondary education for those on the spectrum. More than 80 percent of college students with ASD have attended a two-year community college at some point.2
And there may be some truth to the notion that people with ASD tend to excel in math and technology. Students who focus on science, technology, engineering and mathematics (the so-called STEM fields) are more likely than peers in non-STEM fields to stay in community college and are twice as likely to transfer to a four-year university.2 Public community colleges, which often boast lower tuition and open admissions, may provide a “smoother transition to the academic and social challenges that can arise in a university setting,” according to one research group.2
A growing number of four-year universities are offering extra support services for students with ASD, for a fee of about $4,000 per semester, or more for a comprehensive program. (State vocational rehabilitation agencies may subsidize these fees.) This support package may include help with organizational, independent living, safety and social skills, and peer mentoring and/or counseling. These programs typically focus on students who otherwise meet the academic standards for admission to the university.
“These programs are popping up all over the country, but they’re very different from each other,” says Aleza Greene, director of the Autism Support Program at the University of Arkansas. She launched the program there in 2012 to make sure students with ASD, like her own son, didn’t “fall through the cracks” at the 25,000-student campus.
Marshall University, home of the West Virginia Autism Training Center, was among the first to offer an ASD support program more than a decade ago. It has since helped other universities develop various types of support programs, says Marc Ellison, interim executive director of the center. It even developed a checklist for students to use when evaluating the supports offered at various universities. (See Part 4 of this series.)
At Marshall, students with ASD are paired with trained mentors who help the students adjust to college life. A few years ago, a female mentor accompanied a student to his first meeting with a campus club patterned on the Mystery Science Theater 3000 cult television series. When the mentor and student arrived at the second meeting, the mentor was informed that the student with ASD was accepted into the club, but she, alas, was not. “To me that was a perfect example of what we’re trying to do: The student never would have gone to the first meeting without support staff, and the club was a perfect fit for him,” Ellison says.
COLLEGE EXPERIENCES FOR STUDENTS ACROSS THE SPECTRUM
College is not just for above-average students with autism. Thanks to a change in the U.S. student aid program, students with intellectual disabilities can receive federal grants to attend a comprehensive transition and postsecondary (CTP) program at any of 30 colleges. A high school diploma is not required. The programs provide academic, vocational and independent living skills for students with special needs and can be a steppingstone to further higher education.
VanBergeijk’s Vocational Independence Program (VIP) at New York Institute of Technology is an approved CTP program. The VIP offers two tracks — vocational and degree preparation — at the institute’s Long Island campus.
Adam Shapiro, 22, who is on the autism spectrum, graduated from the VIP, where he was the three-time walking champion in a pedometer program. He excelled in classes on budgeting, travel training, apartment living, nutrition and job skills, he says. He now works part-time stocking the refrigerator and performing other tasks at Bagel Boss, and he is also an associate at Modell’s sporting goods on Long Island. “I have to thank my college program for getting my career started at Modell’s,” says Shapiro.
Matthew Clendenin, who has Asperger’s syndrome, followed a degree preparation track at VIP. The transition to college was tough at first, he says. “The food at the cafeteria wasn’t so great. I was living with a bunch of strangers, and that was very hard to adjust to,” he says. But he became better at self-advocacy. His advice to prospective college students: give yourself time to adjust, because it does get easier.
Cuff, a participant in the Simons Simplex autism research program, says that if she were to try college again, she would opt for an online program because she is adept at computer learning. “If I ever went back to college, it would have to be online college because I’m good at doing things individually,” she says.
- Shattuck, P.T., Narendorf, S.C, et al. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042-1049. View abstract.
- Wei, X., Christiano, E.R., et al. (2014). Postsecondary pathways and persistence for STEM versus non-STEM majors: among college students with an autism spectrum disorder. Journal of autism and developmental disorders, 44(5), 1159-1167. View abstract.
- Wei, X., Yu, J.W., et al. (2013). Science, technology, engineering, and mathematics (STEM) participation among college students with an autism spectrum disorder. (2013). Journal of autism and developmental disorders, 43(7), 1539-1546. View abstract.
- VanBergeijk, E., Klin, A., et al. (2008). Supporting more able students on the autism spectrum. Journal of autism and developmental disorders, 38(7), 1359–1370. View abstract.
- Hamblet, E.C. (2014). What parents and students with disabilities should know about college. National Association of School Psychologists’ communique handout, 42(5). View article.
- Department of Education Office for Civil Rights. (2011). Transition of students with disabilities to postsecondary education: a guide for high school educators. View document.