When Lana Frankle started her freshman year at University of California Santa Cruz, she wanted to prove her capability as an independent adult with autism. She refused her parents’ offer to help pay for tuition and worked full-time to cover costs. While Frankle attempted to balance her neuroscience classwork with her job, she also struggled with fitting in at UCSC and in the freshman dorms. Frankle’s roommate, with whom she barely spoke, snubbed her. She had one close friend, and he went to a different college. After Frankle spent an exhausting first quarter working, studying, and feeling socially isolated, she decided to move into off-campus housing. Eventually, she landed back at her parents’ house, accepted their help with tuition, and commuted to her classes for her final quarter of freshman year.
45%
of children with autism transitioning into adulthood in the next decade will seek higher education
But college continued to deliver challenges. Despite some welcomed stress relief from the job and the tuition pressure, Frankle struggled with mental-health issues during the first quarter of her sophomore year. UCSC lacks specific programming for autistic students, and Frankle was hesitant to initiate contact with her peers. She could handle the work of her classes; however, her inability to make friends amplified feelings of isolation and ultimately depression. That caused her grades to diminish and prompted her to take a leave of absence. Eventually, she graduated with a degree in neuroscience a quarter late. Her 3.0 GPA barely met the requirements for the graduate programs she sought to attend. After facing rejections from several colleges, Frankle received an acceptance from the neuroscience graduate program at Kent State University. There, she discovered an organization called Autism Connections Kent, a student-run organization that aims to support students with autism, teach others about autism, and provide resources for students with autism who need help. Frankle, who serves as president, helps to promote events, lead meetings, and bring in guests to talk about opportunities for students after college. “I also have a roommate now in grad school,” Frankle says, “which worked out great because we were good friends before we were roommates. And that helps to not feel alone.”
The Threats to Neurodiverse Students’ Mental Health
The challenges of Frankle’s academic journey sound familiar to Alexander Morris-Wood, the director of the Beacon College Navigator Prep Program, the first virtual transition-to-college program for neurodiverse students and their families. Beacon College, located in Leesburg, Fla., is a four-year college dedicated to teaching students with learning differences. The Navigator Prep Program, now in its second year, has 50 students. They help to decrease attrition among students who join the program. Morris-Wood says students with autism often drop out of college due to mental-health issues — because the college failed to provide the clinical services they need, the students failed to self-advocate, or the school’s campus resources are understaffed and unhelpful. “They’re very understaffed typically on campuses but, it’s the No. 1 need," says Morris-Wood. “I think that mental health is probably the No. 1 cause of attrition, globally and for more specialized populations.” He says attrition serves as the biggest problem for college students with autism. According to a study by psychologist Susan W. White, only 41% of students with disabilities, including autism, enrolled in a four-year college will graduate with a bachelor’s degree. By comparison, around 59% of the average, non-disability students graduate. In the United States, there are 550,000 children with autism transitioning into adulthood in the next decade (as of 2018), and 45% of those children will seek higher education. As the number of students with autism matriculating into college increases, some universities, such as University of Alabama, Drexel University, and Boston University have begun to prepare for them by implementing neurodiversity into campus culture and into conversations and programs directed at bolstering diversity and inclusion.
Neurodiversity refers to the concept that all human brains are naturally different and wired in unique ways. To highlight those differences, researchers and activists refer to individuals as either neurotypical, which encompasses the vast majority, or neurodivergent, which describes those with diagnoses such as autism, ADHD, dyslexia, Tourette’s, and other learning and developmental conditions. Before social scientist Judy Singer coined the term “neurodiversity” in 1998, doctors tried to treat or cure neurodivergent people, and many experienced cruel treatment. For activist John Robison, that cruel treatment led him to help millions of students who face the same marginalization that he encountered as a child. Growing up, people called him a lot of names: stupid, dumb, and even the unspeakable r-word. His appearance didn’t distinguish him from his classmates. In fact, his light eyes and blond hair afforded him camouflage in any crowd. But his inability to respond to social cues provoked bullying by classmates. He dropped out of high school, worked in the music business (creating sound effects and devices, including the rocket-firing guitars for KISS) and at Milton Bradley (where he created some of the first video games and talking toys), and then created a specialty automobile company.
“I think that mental health is probably the number one cause of attrition, globally and for more specialized populations.”
After 40 years of ridicule, Robison received a non-judgemental explanation for the way his brain functioned: A doctor diagnosed him with autism. That diagnosis liberated him. And after he understood how his brain worked, he moved past his diagnosis, becoming a successful activist, father, and author of several books about neurodiversity, including Look Me in the Eye and Be Different: Adventures of a Free-Range Aspergian. Now Robison serves as a member on the Interagency Autism Coordinating Committee of the U.S. Department of Health and Human Services. He also works as a neurodiversity scholar at The College of William and Mary, as well as a neurodiversity advisor at Landmark College. As a neurodiversity activist, Robison seeks to make the challenges of this marginalized population a part of the discussions, programming, and initiatives on college campuses devoted to racial, cultural, religious, and sexual diversity. He also works to reframe how we speak about it. “Neurodiversity doesn’t deny disability because disability is absolutely real, but neurodiversity posits that we have a mix of disability and exceptionality amongst all of us,” Robison says.
For Robison, reframing the discussion includes examining language. Autism is a developmental condition that affects a person’s social and behavioral skills, compared to those of a neurotypical person. Although scientists have yet to identify its cause, autism is a spectrum, meaning that its effects vary in each person, and therefore is frequently referred to as autism spectrum disorder or ASD. However, neurodiversity advocates, such as Robison, push to change the language associated with autism by shifting away from thinking of autism as a “disorder” and toward autism as a difference.
Illustration by Gillian Whiting.
To combat the negativity surrounding people who are neurodivergent, Robison also pushes for schools to help students who learn in untraditional ways. He pushes for neurodivergent people to be at the forefront of formulating programs, as part of the “nothing-about-us-without-us” initiative. The “nothing-about-us-without-us” idea is a form of resistance to school programs that are led by people who don’t have autism, or any other neurological differences. Robison is not alone. Support for neurodivergent people is increasing with demand as the number of people diagnosed with neurological differences rises. Large companies such as Goldman Sachs, are jumping to hire neurodiverse college graduates. In 2003, 4.4 million children in the US were diagnosed with ADHD. By 2016, the number of children diagnosed with ADHD increased to 6.1 million, according to the Centers of Disease Control and Prevention (CDC). Additionally, the CDC reports that one in 54 children have autism, in contrast to the one in 150 estimation from a study in 2000.
Supporting Academic, Personal, & Career Success
Now, as neurodiversity activism continues to gain traction, advocates push to remove the stigma surrounding their diagnoses and fight for institutions to understand their differences and support them. Some neurodivergent students with autism spectrum disorder need specific accommodations from schools to achieve academic and social success. Connie Anderson, Ph.D., director of the post-baccalaureate certificate program in autism studies at Towson University says some students with autism may need extra time on tests, a quiet place to take tests, or a notetaker. Additionally, some students with autism may need help with challenges outside of the classroom such as facilitating social interaction, a problem that Frankle encountered during her undergraduate studies, and with executive functioning, which allows people to prioritize and control their thoughts and actions. Some students with autism struggle to manage their thoughts and actions in the same way as neurotypical students. Mitchell Nagler, director and founder of Adelphi University’s Bridges to Adelphi Program, a support service for students with autism, states that one of the reasons why his students sometimes struggle is because they stay up all night playing video games and miss their early classes. Students with higher executive functioning make the decision to stop playing video games, despite the pressure to mash buttons into the early morning, and go to bed early. Or, they schedule later classes. Executive functioning controls a person’s ability to problem solve and prioritize. Some students with autism may not have those skills as a part of their diagnosis.
41%
of students with disabilities enrolled in a four-year college will graduate with a bachelor’s degree
In addition to prioritizing how they manage their time, students with autism are accustomed to having specific accommodations from their Individual Education Program (IEP), which is a unique, legally required plan for students from kindergarten through 12th grade who need special education. In college, the responsibility for creating accommodations shifts to the student, who must make their own routine and reach out to the university’s disability services office. This may require them to self-advocate, a concept that is foreign to some students with autism whose parents have advocated for them since they entered kindergarten. Students also need help with personal issues, struggles that undermine their mental health. Students with autism often encounter social issues in the classroom and in the dorm. Frankle believes her trouble finding a group of friends at UCSC fueled her academic struggles. According to Anderson, some people with autism have more difficulty reading the social world compared to neurotypical people, which can cause anxiety. As a result of struggling to make friends, Anderson states that loneliness in students can cause depression.
Illustration by Gillian Whiting.
Meanwhile, some students with autism go to extreme lengths to fit in, sacrificing their personal safety and placing themselves in jeopardy. With compromised executive functioning, some students succumb to the pressures of doing drugs and drinking alcohol in dorms. By adding the effects of drinking with poor impulse control and a desire to fit in, some students with autism find themselves in dangerous situations. At Adelphi University, located in Garden City, N.Y., Nagler taught one of the freshmen in the Bridges to Adelphi program who struggled socially. The student decided one night to drink alcohol for the first time in his life with one of the sports teams. After a hazy amount of tequila shots, the paramedics transported the student to the hospital with alcohol poisoning.
“Dude, what are you doing?” Nagler asked.
“Mitch. That was the best night of my life,” the student said.
“You went to the hospital. You almost died! You’re not going to do that again, are you?”
“Oh, I would definitely do that again,” the student stated, beaming after his wild night.
And while some students with autism go to the extremes to fit in, others may tattle to a resident advisor when one of their floormates smokes in the dorms, which can lead to the student with autism becoming ostracized among their peers. To combat the social and executive functioning issues students with autism face, schools such as Beacon College, Adelphi University, the College of William and Mary, and Landmark College offer pre-college programs and resource centers to support those who are neurodivergent.
University Role Models
For Morris-Wood, the ideal college program for students with autism would go beyond academic success. His ideal program would collaborate with the college, focus on mental health, work with campus integration and connectedness, and help students with executive functioning skills. For best-practice ideas, he points to Beacon College. It specializes in students with autism and other conditions and creates a specific curriculum catered to those with learning differences. Before students attend college, the school offers a virtual pre-college program for students with disabilities. They learn about time management, social skills, self-advocacy, sensory friendly dorm rooms, and how to use the technology. Landmark College, located in Putney, Vt., also specializes in teaching neurodivergent students. It was founded by and for students with learning differences. The college boasts a neurodiversity center that hosts events, prepares students for post-grad life, and practices student advocacy.
“Neurodiversity doesn’t deny disability because disability is absolutely real, but neurodiversity posits that we have a mix of disability and exceptionality among all of us.”
But role models exist at schools that serve a mixture of neurodivergent and neurotypical students. The College of William and Mary, located in Williamsburg, Va., offers a two-day course taught by Robison for students, alumni, parents, and the general public. Those who take the course learn about how people with brain differences form relationships, handle emotions, and process information they receive. At Adelphi University, the Bridges to Adelphi program aims to raise the GPA, maintain a high retention rate, and prepare neurodivergent students for a life and career after college by creating work opportunities with local companies that highlight the benefits of having a neurodiverse staff and offer job placements. They begin supporting neurodiverse students before move-in day and help transition neurodivergent students from high school to college. Once school begins, the staff creates individualized plans for the 125 students in the program depending on the support they need for success.
During his time in the Bridges to Adelphi program, Nagler encountered a student, Sean Culkin, who failed out of another college before coming to Adelphi University. For him, that student serves an example of the success that comes from supporting neurodiverse students. Culkin transitioned back into college slowly, taking only a few classes at a time and living at home. After vocational testing, he changed his major to biology. Eventually, he started to live on campus and became a full-time student. Then, the Bridges to Adelphi program used their connections to secure an internship for him with Northwell Health in Lake Success, NY. Now, he helps run a cancer research lab there. “He’s got a great job,” Nagler says. “And when we got him, believe me, there was no indication that that would be the case.”