Is a Diagnostic Label of Asperger’s a Stigma in College?

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.

Student sitting reading a book and taking notes in lecture hall

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

Template to Support College Writing Assignments for Students with Aspergers

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:

Student doing the notes

  1. 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.
  1. 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.
  1. 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.

College Students with Aspergers Speak Out: Take Our Advice

Important advice from students who have 'been there and done that'

Colleague and friend Andrew Nelson, a coordinator in the West Virginia Autism Training Center’s Family Focus Positive Behavior Support program, supports individuals with ASD in their transition to college as part of his day-to-day duties. In his work, Andrew began to notice similar questions and issues were being raised by various students.

Many of the questions were about basic procedures of higher education, such as how one applies to and gets into a university. Other questions – like “Do I have to do my own laundry?” – were about campus living.

To help answer these questions, Andrew went straight to the experts: college students on the spectrum!

In his video interview with three Marshall University students, Andrew explores in brief the topics of: college admission, financial aid, effective support strategies, independent living, and the importance of building on-campus relationships. 

All in under 6 minutes!

Important advice from students who have “been there and done that” include:

  • Prepare for college by taking seriously your highs school studies. Work to get “the best grades you can,” and prepare for college entrance exams. Those exams are necessary for four-year colleges and universities.
  • Understand that admission to higher education is a process, and that process involves application, meeting admissions standards, submitting transcripts, financial aid, and other paperwork. Become familiar with the process at the school you want to attend.
  • Students often have to adapt to the differences that exist between high school and college, especially differences related to educational autonomy and self-direction.
  • Simple technology, such as smart phone alarms, visual schedules, and calendars, can help keep students organized.
  • If you have a questions, most professors will be accessible and willing to help you.
  • Develop social networks, find a way to enjoy hobbies, and enjoy the experience of college rather than focus your energies solely on academics. A balanced life is key.

by Dr. Marc Ellison

Using Art to Facilitate Skill Building in College Students with Aspergers

Eszter Kiss is a Provisionally Licensed Counselor employed by the West Virginia Autism Training Center at Marshall University. Kiss presented “Adding Color to Cognitive Behavior Therapy,” at the WV Counseling Association.

The presentation centered on the use of art as a tool to facilitate communication of thoughts and behavior for individuals with ASD.

Specifically, Kiss uses this technique to support college students diagnosed with Asperger’s Disorder.

Resilience

The autism community has long recognized that many living with ASD can better communicate their inner experience through writing or art. For several reasons, an oral expression of their cognitions or emotions can be extremely difficult for those on the spectrum.

College students diagnosed with ASD often need a process through which to express and receive abstract information. Kiss’ presentation highlighted one such process.

Cognitive Behavior Therapy (CBT) is a theoretical mental health counseling process through which this tool was used. CBT should not be attempted by those without advanced training in counseling psychology, or by those without expertise in this specific approach. However, the use of art as a tool to communicate abstract thought and improve life skills can be used by parents and support staff outside a CBT process.

For example, consider the picture at the beginning of this post drawn by a student on the spectrum after Ms. Kiss asked him to provide a visual representation of “resilience.”

The picture of the knight successfully blocking the arrows being shot at him allows a support professional to discuss the following types of issues:

Building a Community for College Success with Aspergers: One Student’s Experience

An Asperger Student's Personal Experience

Each summer the West Virginia Autism Training Center, located at Marshall University, conducts a college experience for rising high school seniors interested in learning about the college lifestyle. Students take a typical class, live in dorms, participate in skills groups, and attend study halls.

And in between all that, they try to have some fun.

Significant to the experience is the building of “community” – in both the physical and social sense of the word – in which students can feel safe and connected to others. The college support program strives to create an experience where students can recognize and realize their potential. A large part of realizing one’s potential for higher education is feeling grounded and confident on campus.

What follows is a description of that high school summer experience written by a student who participated several years ago (he is now a successful upperclassman at a university). Lots of professionals talk about the importance of practical experience when teaching students with ASD; enjoy this first-person account from Charlie, as he describes how a summer experience transformed his views on attending college.

My name is Charlie and I have Asperger’s Syndrome. This past Spring I was finishing my junior year in high school in Virginia, and my parents thought Marshall University would be a good idea for me for college because of their Asperger’s program. So we went to visit the school during my Spring Break.

At first, I was extremely nervous when I visited Marshall in March because I have always wanted to be close to home. And I didn’t really want to do the summer program. But my parents thought it would be good for me and that I should try it. So my dad and I drove out eight hours from Virginia in July, and I didn’t know what to expect.

On the Sunday that I moved into my dorm, I was totally petrified because of all the things I had to do so that I could have a decent room. Two days later, after my father left, I realized “Oh my God! I’m on my own!” and when reality sunk in I was so afraid that I almost cried myself to sleep that night.

But the next day, when I went to the student skill group, I found out that some of the students in the program were actually entertaining – like J.B., who was a funny guy who makes swift comebacks and wisecracks. To me, J.B. was like a big brother figure and he helped make the summer more fun. I met a lot of other great students there, and we formed a Nerf Wars group, battling each other with foam darts and weapons on unoccupied floors of our dorm and out on the campus grounds. We also watched movies and funny YouTube videos in each other’s dorm rooms, and I met other people who liked manga and anime too.

The social aspect was my favorite part of the five weeks – and I’m not very social at home. But living in the dorm on my own forced me to get out and do things and make friends.

I took a college level class in Music Appreciation, and I really liked it. The professor made me listen to opera for the first time, and I found that I grew a taste for it (especially Mozart’s Don Giovanni).

After completing the music class, the professor said that I was his favorite student since I knew so much about the history of the time periods of the music that we listened to. I worked hard and got an A in the class – and I’m really proud of that, especially since I’m still in high school! It was an awesome experience to have some freedom too. While I was on campus, I didn’t shave at all for the whole summer program, so I now have a beard.

By the end of those five weeks, thanks to success, fun, and foam darts, I really thought that college was really a great place to be. It was ironic because when I first got there I was afraid that I would oversleep and not get to class on time. I was worried about what time to go to the dining hall, how to manage my bank account and my time.

Turned out that I was able to do all of those things on my own and I had Keshia, my awesome mentor, to fall back on. She was really great. She met with me every day, got me organized, and helped me study for tests and assignments. She even drove me to Wal-Mart so I could buy more foam for my Nerf arsenal! At first I was nervous when I arrived, since I had visited so many colleges and felt a bit anxious. I thought that college would be too overwhelming. But by the time I left, I had a great time and didn’t want to come home.

by Marc Ellison

Summer College Experiences Can Greatly Benefit ASD Students

The summer between high school graduation and the first day of college classes can be both exciting and anxiety-producing. It can be for anyone, really, but it may be especially so for individuals diagnosed with ASD. Challenges with executive functioning and theory of mind may make aspects important to the transition– planning for it, for example, or knowing who to go to for necessary advice to help with the transition – a significant hurdle to overcome.

Can Success be Predicted for College Students with ASD?

Having a practical experience on a college campus prior to the move-in day may be a good way to overcome some of the challenges associated with transition to college.

Marshall University first developed a college experience for high school students diagnosed with ASD in 2008. Each summer dozens of rising seniors (students who have completed their junior year of high school and are entering their senior year) spend five weeks on campus.

They take a course of their choosing for college credit, live in dorms, and eat meals in a college cafeteria. Students receive one-on-one mentoring from the staff of the West Virginia Autism Training Center, and attend skill-building groups during their stay.

General goals of the summer college experience include:

Ready to Graduate? Tips for Asperger’s Students and Those Supporting Them

Hillary Adams and Jackie Clark presented “Bridging the Gap: Supporting Students with ASD as they Transition from College to the Workforce” at the 2014 Autism Society conference held in Indianapolis, Indiana. Representing the West Virginia Autism Training Center, Adams and Clark provided several tips and considerations for those who are about to graduate and those who support them.

Tips included:

  • Utilize campus resources related to employment, especially those services provided traditionally on college campuses through a Career Service office. Begin a relationship with that office early; don’t wait until the final year
  • Participate in mock interviews, especially if those interviews can be videotaped for critique and coaching
  • Search for employment opportunities that fit interest as well as skill
  • Become aware of accommodation needs, and learn the self-advocacy skills necessary to request them. Learn to be more interdependent, understanding who in a potential workplace could best help you when help is needed
  • Plan the transition early, and plan it with others who are invested in your future

One of the coolest tips provided by Adams and Clark was the use of a Telephone Interview Checklist. This script supports college graduates as they undergo a telephone interview with a potential employer.

The checklist does the following:

Including Parents in the Community of Support for Aspergers Students in College

Rights afforded by the Family Educational Rights and Privacy Act (FERPA) transfer from parents to their children when those children enter college or turn eighteen years old. As a result, parents are unable to provide the same levels of support and advocacy they provided when their child was in high school.

Because of FERPA, parents of college students are generally unable to:

  • talk to instructors
  • request information about grades
  • explain to instructors how their child experiences ASD
  • or provide information about accommodations that may be helpful to their child living on the spectrum.

Depositphotos_36350039_s

While many faculty and staff fear the hovering of the stereotypical “helicopter parent,” college support staff who truly understand how best to serve students with ASD recognize the value that parents bring to a student’s community of support.

In general, parents of students with ASD have “been there and done that,” in regard to education. Many parents can provide advice about the most subtle of modifications that, when implemented, may help their child be successful in a college classroom. College support staff would be wise to consider how to effectively integrate parents into the support programs of college students with ASD.

Examples of how that can be accomplished without violating the rights of the student include:

Help student express the limits of, and exceptions to, the reciprocal exchange of information with parents.

Support staff at Marshall University recognize and appreciate the rights of adult students, and honor each request made to keep educational information private. However, prior to developing support strategies we discuss with each student the value of allowing a parent to participate in their support, and the importance of sharing information that will enhance that support.

Should the student allow some information to be shared and insist other information remain private, staff document that request and ensure all members of the team understand and adhere to the request.

Create formal events that promote community building with parents.

Each October, parents of college students supported by the WV Autism Training Center travel from across the country to attend Parents’ Weekend at Marshall University. The event typically occurs during Homecoming Weekend, promoting further the concepts of fellowship and friendship. Staff work carefully to ensure the 150 – plus participants feel part of a large, intimate community focused on the same goal.

by Marc Ellison

Communicating Strengths and Needs in College

Writing a requested accommodations letter to your professors

Whether or not a student should formally disclose an autism spectrum disorder to disability support staff at a college or university is a personal decision one should make after thoughtful consideration. It is my opinion, however, that students have the potential for a better college experience when they provide faculty with information that improves the ability of the instructor to communicate with the student and accommodate his or her academic and social needs.

Using Choice to Increase Academic Success

We at Marshall University have found that providing professors with information and examples about preferred instruction styles can help facilitate a successful classroom experience.

Your school might have disability services in place that offer facilitation between professors and students to help fit their accommodations. Oftentimes these services take the form of a letter written to the instructor that explains the student’s necessary accommodations for the class, which the professor must adhere to.

Look to see if your campus offers such services, and set up an appointment with a disability services representative to discuss your options. If your school does not offer services such as these, you can create this letter yourself.

Here is one example of how a letter to your professors could look.

Skills for Aspergers Students for Residence Hall Success in College

Many colleges and universities require undergraduates to live on campus, especially during their freshman and sophomore years. “Residence life” (calling on-campus living environments “dorms” is considered a faux pas in higher education these days) requires students to live as a member of a small, interactive society. To be an effective and successful member of an on-campus living environment, students are expected to understand and conform to social norms within residence halls. Students are also expected to pull their own weight both socially and in regard to independent living in their dorms.

Brick Building on University Campus

Students diagnosed with ASD are sometimes challenged in independent living skill development.

Many require additional supports to learn these skills, and in recognizing when to use them. Colleges are not prepared to teach these skills to this population. Less than 5% of public, four-year institutions report employing staff dedicated to teaching independent living skills to college students diagnosed with ASD.

A successful residence hall experience requires one to understand and conform to understood norms and few colleges have employees available to teach those skills. It becomes clear that students with ASD must begin learning and mastering necessary skills prior to their transition into college.

To master the skills necessary for a successful residence hall experience, one must know what is expected for dorm living.

Expectations include:

  • Participation in scheduled floor and resident hall activities, including scheduled floor meetings
  • Understand and follow residence hall rules
  • Interact socially with other students on your floor
  • Communicate effectively with roommate(s), including working through conflict
  • Interact with residence hall faculty and staff
  • Utilize academic support resources made available in residence hall settings

by Marc Ellison