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Autism and the College Experience

Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute
Date Published: 
May 12, 2014

This is the third in a series 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. Other articles include parts 1) Coming of Age: The Transition to Adulthood, 2) Daily Living Skills: A Key to Independence and 4) Finding a College Program for Students with Autism.

Photo of Elizabeth Cuff drawing Liz Cuff is an artist

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 said. "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 to be 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 an autism spectrum disorder (ASD), the transition can be more abrupt and dramatic.

The Individualized Education Programs (IEPs, for short) that helped them from elementary through high school disappear in college. Their parents are no longer able, or welcome, to advocate for them. And their struggles with communication, organization or interpreting social nuances can multiply exponentially in college, away from the watchful eye and structured world of parents, principals and special education teachers.

Researchers have found that young adults with ASD have low rates of employment and education after they leave high school. They were less likely to be employed than youth with intellectual disability, a learning disability, or a speech/language impairment. More than half of the youth with ASD had no job and no school participation in the first two years after high school, a higher percentage than the youth with those other disabilities.1

The picture improves with time. Almost 35 percent attended college and 55 percent held a paying job in the first six years after receiving high school diplomas or certificates.1 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 a college degree but require a range of supports to help them succeed.4 As Ms. 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 unique needs of students on the spectrum.

High School vs. College Supports for Students with Disabilities

Photo of Kerry Magro Kerry Magro

Under the U.S. Individuals with Disabilities Education Act, a free and appropriate public education is a right and 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, provided these accommodations do not fundamentally change the requirements of their programs.

Those reasonable accommodations often include extended time on tests, taking tests in a 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 colleges, particularly two-year schools, may choose to offer it.

"Under the Americans with Disabilities Act, higher education is a privilege. 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," said Ernst O. VanBergeijk, Ph.D., M.S.W., associate dean and executive director of the Vocational Independence Program (VIP) at New York Institute of Technology.

Like Ms. 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," said Mr. Magro, who received bachelor's and master's degrees from Seton Hall University in New Jersey.

A College Necessity: Self-Advocacy for Students with Autism

When your child goes off to college, you are out of the loop. It's tough for the parents.

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," Mr. Magro recalled.

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 Mr. 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 said.

Some students may not want to disclose their disability. One mother of a student at a selective Northeastern university said 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, said his mother, a participant in the Simons Simplex autism research project.

Parents used to being their child's advocate in high school special education meetings should know that colleges 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," said the mother. "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, said 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 advised.5

Needed: An "Interpreter of the Social World" for Students with ASD

The biggest issue is not academics. It's navigating the social environment and having the independent living skills necessary to be away at college.

Photo of college student taking a break from studyingColleges 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, Dr. VanBergeijk said.

"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 explained. "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," he said. The student may become a target. He knew one student with ASD who left an Ivy League university because of bullying in the dormitory, he said.

Students may need special accommodations for dorm living, such as the option for a single room and lighting that doesn't cause sensory problems. Whether colleges can provide that is "hit or miss," he said. Colleges may interpret the U.S. Americans with Disabilities Act differently and may be affected by their size, budget and mission, he said.

Mr. Magro, 26, said 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 said. "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 said.

He also went public with his diagnosis. He gave a presentation on autism in class, and at the end, he told his classmates 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," said Mr. Magro, now an Autism Speaks staffer, motivational speaker and author.

An article by Dr. VanBergeijk and researchers Ami Klin and Fred Volkmar recommended that colleges offer social skills groups, counseling, vocational training and life coaching to students with ASD. They also encouraged 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 post-secondary education. 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 excel in math and technology. Students who focused 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

Photo of Adam Shapiro at VIP graduation NYIT-VIP graduate Adam Shapiro

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 their respective universities.

"These programs are popping up all over the country, but they're very different from each other," said Aleza Greene, Ph.D., director of the Autism Support Program at 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, said Marc Ellison, Ed.D., interim executive director of the WV Autism Training 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. The mentor and student arrived at the second meeting, at which 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," Dr. Ellison said.

College Experiences for Students Across the Spectrum

But 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 30 different 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 stepping stone to further higher education.

Dr. VanBergeijk's Vocational Independence Program (or VIP) at New York Institute of Technology is an approved CTP program. The VIP offers two tracks – vocational and degree preparation – at the Long Island campus.

Adam Shapiro, 22, 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 said. He now works part-time stocking the refrigerator and performing other tasks at Bagel Boss, and he also is 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," said Mr. Shapiro, who is on the autism spectrum.

Matthew Clendenin, who has Asperger's Syndrome, followed a degree preparation track at VIP. The transition to college was tough at first, he said. "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 said. But he became better at self-advocacy. His advice to prospective college students: give yourself time to adjust because it does get easier.

Ms. Cuff, a participant in the Simons Simplex autism research program, said 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 said.

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References: 
  1. Shattuck, P.T., Narendorf, S.C, Cooper, B., Sterzing, P.R., Wagner, M. & Taylor J.L. (2012) Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics. 2012 Jun;129(6):1042-9. View abstract.
  2. Wei, X., Christiano, E.R., Yu, J.W., Blackorby, J., Shattuck, P. & Newman, L.A. (2014) Postsecondary Pathways and Persistence for STEM Versus Non-STEM Majors: Among College Students with an Autism Spectrum Disorder. J Autism Dev Disord. 2014 May;44(5):1159-67. View abstract.
  3. Wei, X., Yu, J.W., Shattuck, P., McCracken, M., Blackorby, J. Science, technology, engineering, and mathematics (STEM) participation among college students with an autism spectrum disorder. (2013) J Autism Dev Disord. 2013 Jul;43(7):1539-46. doi: 10.1007/s10803-012-1700-z. View abstract.
  4. VanBergeijk, E., Klin, A. & Volkmar, F. (2008) Supporting More Able Students on the Autism Spectrum. Autism Dev Disord (2008) 38:1359–1370. View abstract.
  5. Hamblet, E.C. (2014) What Parents and Students With Disabilities Should Know About College. National Association of School Psychologists’ Communique Handout: January/February, Vol. 42, No. 5.
  6. U.S. Department of Education Office for Civil Rights. (March 2011). Transition of Students With Disabilities to Postsecondary Education: A Guide for High School Educators. View document.

Photo credits: 1) Elizabeth Cuff, 2) Kerry Magro, 3) Clipart.com, 4) Adam Shapiro