The prevalence of autism spectrum disorders (ASD) has risen significantly since first described in the 1940s. The Center for Disease Control estimates currently 1 in 68 children in the United States lives with an ASD diagnosis, and that 46% of those diagnosed have average to above average intelligence. A large body of literature describes the significant, life-long difficulties faced by many individuals diagnosed with ASD. The support needed for college students diagnosed with more traditional disabilities are well documented. However, information is lacking in regard to effectively supporting the college instruction of students with Asperger’s Disorder and how to support their navigation of a campus society.
Researchers explored the topic of providing effective supports to college students diagnosed with Asperger’s Disorder. Investigators convened a panel of experts to provide input on the topic, and then used a Delphi surveying method to categorize common themes identified by panel members.
The survey resulted in the creation of the Benchmarks of Effective Supports for College Students with Autism Spectrum Disorders. This tool is available as a PDF file for use in your own college assessment:
1. Social Challenges, Independent Living Skills, and Cognitive Organizational Skills were mentioned as a need more often by expert panelist than was Academic Challenges. This suggests panelists agree that students diagnosed with Asperger’s Disorder are, generally, intellectually capable of performing in the classroom but struggle with the social and organizational aspects of the college lifestyle;
Students across the country are making the trek back to campus within the next few weeks, as winter break comes to an end. As students pack their belongings and plan their travel back to college, each is thinking about the new semester: “What will the new professors be like?” “Can I handle the workload?” “What should I pack for campus, and what should I leave at home?” Several years ago, at the Penn State National Autism Conference, I met and befriended Caitlin Baran. Caitlin earned a Bachelor’s degree in psychology from Lock Haven University of Pennsylvania and a Master’s degree in psychology from Shippensburg. Caitlin also was diagnosed with Asperger’s Syndrome in 1997. Considering her extensive experience in the area of “transition to college,” I once asked her to provide some tips on the topic of returning to school after an extended break. Caitlin’s advice follows.
Advice From a College Student with Aspergers:
As an individual with Asperger’s Syndrome and a graduate of both graduate and undergraduate school, I thought it would be a wonderful idea to share tips on how to make the transition back to school a successful one.
My first tip deals with packing for school. It was always difficult to decide what to pack for school and what to leave behind at home. I found that packing was easier (a lot less stressful) when I made a list of what to pack.
When I packed something, I packed it with other like items. For example my cd’s and dvd’s together. That made it easier to know what I had packed not only during packing, but also when moving back to school. I would unpack all like items at once, placing them in the same location in my room. Also making a list helped me to check items off the list once I got and packed the item so I knew that particular item was taken care of.
Remember to start packing early. The items you don’t use on a daily basis should be packed before the items you use daily. Also it helps to designate a place in your house to collect the belongings you will be taking to school with you.
Another tip is to email the professors you will be having in the upcoming semester before the semester starts to ask what textbook will be used for the class.
This way if you need books on tape you can make sure to order it ahead of time and have the book on tape before the start of the semester. Even if you don’t use books on tape, emailing professors before the start of the semester is still a good idea. By knowing what textbook will be used for class ahead of time you can purchase the textbook on half.com and save money. In addition to saving money this also saves you from standing in lines in an overcrowded bookstore.
Several break-out sessions of the annual Autism Society conference in Indianapolis, Indiana were focused on the support of students with ASD in higher education. Dena Gassner (Adelphi University), Dr. Lorna Timmerman (Ball State University), and Jackie Clark and Rebecca Hansen (Marshall University) carried out a panel discussion on the topic, titled “Is College for Me.” Panel members discussed challenges related to success for students with ASD in higher education, and best-practice support strategies that can help overcome challenges.
Dr. Timmerman discussed at length the importance of self-determination in achieving success in college.
According to the presenter, self-determination “ranks as the #1 trait essential to college success for students making the transition to college.” The challenges, as Dr. Timmerman points out, is that “many students with ASD are weak in self-determination skills.”
In an article about self-determination from 1998, scholars describe self-determination as “a combination of skills, knowledge, and beliefs that enable a person to engage in goal directed, self-regulated, autonomous behavior. An understanding of one’s strengths and limitations together with a belief in oneself as capable and effective are essential to self-determination.”
According to Dr. Timmerman, four components of self-determination exist:
Dr. Timmerman suggests that to develop the self-determination skills necessary for college, high school students should:
Learn to become more independent, especially in regard to making their own decisions.
Understand how to regulate their behavior in difficult situations, deal with stressors, and plan ahead by setting and attaining goals.
Know their strengths, weaknesses, interests, and preferences; understand how autism affects their learning and day-to-day living.
Have confidence in their abilities to be successful and meet goals.
Dr. Julio Alves, of Marshall University, has worked extensively with college students diagnosed with ASD in his role as instructor of Classical Guitar Music Theory. Students who pursue a degree in Fine Arts face a significant hurdle in that they must pass both academic and rigorous performance evaluations to graduate.
A video interview with Dr. Alves can be seen below. The video isn’t professionally edited; in fact, the camera is a little shaky and the transitions between questions aren’t perfect.
Oh, but the content!
The insight and advice shared by Dr. Alves is worth sitting through twelve minutes of less-than-perfect editing. Some gems to watch out for:
At the 1:25 mark, Dr. Alves describes his initial anxiety upon learning that he would be providing instruction to one or more guitar majors diagnosed with ASD. He points out that his training to be a college professor did not include learning to teach students with ASD, and he felt both excited and afraid of the challenge.
At the 2:30 mark Dr. Alves states that he, as a teacher, may have learned more from the student (about himself, and his ability to teach) than the student learned from him.
At the 3:20 mark he explains the initial doubts he had about how well students with ASD could perform in college, and how that bias changed over time.
At the 4:35 mark Dr. Alves discusses the importance of relationship development with students. He provides a real-life anecdote that beautifully illustrates the importance of relationship building, and explains how professors must take the lead in building the relationship. The story also proves how well students with ASD can perform in the classroom when information is crafted to fit their learning styles.
At 9:27 Dr. Alves provides some basic tips to professors who teach college students living on the autism spectrum. He emphasizes the importance of creating a learning environment that feels comfortable and safe for students.
Students making the transition from high school to college often question the need to make public – either verbally or by providing a formal evaluation to disability service professionals in higher education – their diagnosis of Asperger’s Disorder.
The concern is one to consider; common sense suggests to us that public disclosure of an autism spectrum disorder may cause stigmatization.
But does it really?
It may be, certainly. Responses to the disclosure of an autism spectrum disorder likely vary from peer to peer, and institution to institution.
There is evidence, however, that diagnostic labels may create less stigma for adults with Asperger’s Disorder than do the social behaviors commonly associated with the syndrome.
Butler and Gillis (2011) report the findings of their research on this topic in a paper titled “The Impact of Labels and Behaviors on the Stigmatization of Adults with Asperger’s Disorder.”
The researchers surveyed 195 undergraduate psychology students at Auburn University by presenting them with vignettes that portray a wide spectrum of social behavior. Vignettes were paired either with the label “Asperger’s Disorder,” or with no label at all. Participants then completed a modified Social Distance Scale. This was a self-report questionnaire to express the level of stigma they attached to the individual described in each vignette.
Findings “support the hypothesis that it is the atypical behaviors associated with AD that influence stigmatizing attitudes towards individuals with AD, not the label of the disorder”.
In this study the label “Asperger’s Disorder” did not affect stigmatization to a significant level.
This research is clearly limited, and the researchers suggest several potential reasons for the outcome. The study suggests, however, that in order to address potential stigmatization it may be best to spend time and effort teaching appropriate social and independent living skills, rather than prioritizing disclosure as the highest concern.
This won’t be true for all. But it is a point to consider.
by Dr. Marc Ellison
Butler, R. C., & Gillis, J. M. (2011). The Impact of Labels and Behaviors on the Stigmatization of Adults with Asperger’s Disorder. Journal Of Autism & Developmental Disorders, 41(6), 741-749. doi:10.1007/s10803-010-1093-9
The best advice one can receive about effective support for college students diagnosed with ASD comes from, of course, students themselves. Kristopher Kirk graduated from Marshall University with a Bachelor of Science degree in Engineering (with an emphasis in Civil Engineering) in early December, 2014. At a university-sponsored Parent Weekend event, Kristopher – who has received supports from MU’s college support program during his four years at the school – provided these insights about his college experience.
Kristopher advises college students living on the spectrum:
Depression is most common in adolescents and young adults with Asperger’s, and particularly in those with stronger intellectual and verbal skills. That means college students with Asperger’s are at a very high risk for depression. This is particularly true for freshmen, who are transitioning to the college experience. Although I’ve seen this in later years as well when students are dealing with more challenging classes, social issues, and upcoming graduation as triggers.
Let me tell you about one college student’s experience with depression:
Franklin went off to a good college based on his excellent academics in high school. However, he’d been provided with executive function scaffolding all through high school. His parents and a teacher had helped him organize his time and initiate his work. The school counselor and his parents had feedback from teachers if he was falling behind on assignments.
In college, he was on his own.
He was supposed to check in with the disability office, but he resisted being seen as needing help. Franklin had challenging classes and had taken on a very full load of five classes; he had always set his standards and expectations of himself very high. Franklin began falling behind in writing papers for his English literature class because writing was difficult and he wrote slowly. His effort was going into writing, so he fell behind on the reading. He tended to procrastinate as the pile of work grew. Franklin was embarrassed at being behind, so he stopped going to English. He also was stressed by feeling at a loss in terms of the 24/7 social demands.
As you might expect, all of this stress was a trigger for depression. In Franklin’s mind, one was either a success or a failure, and he was a complete failure.
Many college students with Asperger’s need assistance with writing assignments. Whether it is for a writing intensive course or for an essay in a basic undergraduate class, the following often occurs:
Students write too little. Students often presume professors will infer from their most basic of communications what the student intends and, as a result, leave out details.
These details, of course, are what professors want to read.
Students write too much. Students are sometimes uncertain what professors want to read and end up throwing everything – including the kitchen sink – into the document. This especially happens when students are writing about a topic that has personal interest to them.
Students with Asperger’s Disorder sometimes cannot predict what professors want to read in a writing assignment. This creates difficulties with emotional regulation, during which students may avoid the assignment or have an emotional meltdown.
Students can more easily complete writing assignments when provided clear instructions about the structure of an assignment and relevant examples. A template is often helpful. The following is such a template, used to help a student assigned with writing a paper for a History class.
Please note: The examples provided were not related to the assignment. They were merely examples.
In 2013 I surveyed disability service professionals at 578 degree-granting, four-year public institutions of higher education. The survey was designed to determine the current readiness of higher education to support the academic, social and communication, and independent living needs of college students diagnosed with Asperger’s Disorder.
The 2013 study demonstrated college students with Asperger’s Disorder required specialized supports, and that disability services available traditionally on campus to this population were generally ineffective. It explored, in part, whether or not colleges had specialized supports for this student population outside of traditional disability services.
This article is the third in a three-part series that reports the outcomes of that research. Read Part 1 and Part 2 of this series.
In 2013, to fulfill the requirements of my doctoral degree, I surveyed disability service professionals at 578 degree-granting, four-year public institutions of higher education. The survey was designed to determine the current readiness of higher education to support the academic, social and communication, and independent living needs of college students diagnosed with Asperger’s Disorder. 230 colleges participated in the survey.
The 2012 study demonstrated college students with Asperger’s Disorder required specialized supports, and that disability services available traditionally on campus to this population were generally ineffective. The 2013 nation-wide survey explored, in part, whether or not colleges had specialized supports for this student population outside of traditional disability services.
The first research question addressed academic supports, and asked: