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.
As most teens and adults with Asperger syndrome know, people with Asperger syndrome can be significantly depressed. The rates of diagnoses of depression vary among studies, from 18% to 22%. The most commonly quoted rate of a depression in the general population of the US is 6.7%. Most of the research shows both genders have these high rates of depression.
Studies focused on males and females and not those who are transgender. There are more people who identify as transgender in the AS population than in the general population and transgender people have a higher rate of depression. One would guess that someone who is both AS and transgender might have a high tendency towards depression.
Interestingly, non-autistic full siblings and half-siblings of individuals with ASD (not just Asperger syndrome) also had higher rates of depression than the general population, although at half the rate of those with ASD. Studies of suicide attempts are also very troubling. In studies of suicide, the rate of suicidal thoughts and attempts are prevalent, especially in adolescence and young adulthood.
It’s critical to identify depression, since it can be treated.
It’s obviously important to understand why rates of depression and suicidal thoughts are so high. One factor, given the findings in siblings, is that there is an increased genetic vulnerability to depression, although large studies haven’t supported a common genetic overlap. We have to look to other factors to account for these high rates of depression.
It’s important to diagnose clinical depression for anyone for a simple reason – depression is treatable with a variety of modalities:
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:
Volunteering at an animal shelter is a great way for tweens, teens and young adults on the autism spectrum to practice and improve social and job skills. They also learn responsibility and a respect for animals. As visitors come into animal shelters to look at animals available for adoption, it’s the perfect place for teens to improve face-to-face communication. The experience they gain volunteering at an animal shelter molds them into more effective volunteers and prepares them for the workforce.
Their time spent volunteering will produce better outcomes (adoptions) if they have good communication skills. Here are some top social skills from my book to ensure teens maximize the chance of an animal getting adopted, and master important social and job skills:
1. Smile and Say Hello:
When you see another person, whether a co-volunteer, staff member or visitor, smile and say “Hello”. Your smile will set the tone for positive future interactions and brighten the person’s day. It may even lead to an animal getting adopted or a financial donation. It all starts with a smile!
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. 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.
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 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:
Announcing a new resource on Aspergers101! Today we launch Aspergers 101 Frequently Asked Questions section. We polled the 101 top requested questions on Asperger Syndrome and put them in one place for those seeking information on High Functioning Autism or Asperger Syndrome! These questions range from the origins of Asperger Syndrome, the early signs all the way through adulthood. Some questions merited a one word response while others provide you with a detailed bullet-point answer. We would like to thank our underwriting sponsor: The Starfish Social Club for supporting and providing you this on-going free resource! To access Aspergers101 FAQ page either click on the ad below or it will be permanently available at the top menu bar on our website under the “Asperger Syndrome” tab.