A comprehensive survey of current and former college students with autism spectrum disorders.

BACKGROUND: There is a paucity of research concerning individuals with autism spectrum disorders (ASD) pursuing higher education.
METHOD: This study sought to augment this gap in the literature by surveying individuals with ASD who are currently college students or who have previously attended college.
RESULTS: Thirty-five individuals completed an online survey. These individuals reported receiving extensive academic supports that enabled their academic success. Their reported difficulties in the social and emotional domains received less support. In addition, not all areas of campus life were supportive, as study abroad and career service offices were reported to not understand individuals with ASD.
CONCLUSIONS: Overall, the results of this survey indicate the importance of self-advocacy and the need for institutions of higher education to provide comprehensive supports for individuals with ASD in the academic, social, and emotional domains in order to effectively integrate this group into the campus environment.

Introduction

“Sometimes I'm surprised I've made it this far and other times I feel like it's for nothing because I'm not sure that college is helping me learn enough social skills to get a job.” — Study Participant

The above quote from a participant in this study speaks to the paradox facing individuals with autism spectrum disorders (ASD) pursuing higher education. These individuals have advanced academic skills (often in very specific domains) but face social and emotional challenges. The increase in the number of individuals diagnosed with ASD over the past 10 years [1] will likely lead to an increase in the number of postsecondary students with ASD. The awareness of ASD on college campuses has increased [2-4], which is a major accomplishment as early descriptions of ASD were unclear about the possible of postsecondary education for these individuals [5,6]. Unfortunately, given this progress, individuals with ASD still have among the worst transition outcomes of any disability group [7,8]. Specifically, individuals with ASD are the least likely to attend postsecondary school [9], achieve independent employment [9], and live independently [10]. However, those who do attend postsecondary school have the highest enrollment in the fields of science, technology, engineering, and mathematics out of all disability groups [11].

There is little empirical work guiding the development of postsecondary programs for individuals with ASD. However, a number of guidebooks [12] have emerged in recent years to help students with ASD through postsecondary school [13,14]. These guides offer many suggestions for potential accommodations such as additional time on examinations and long-term assignments, reduced course loads, and potential housing modifications (e.g., requesting to live in single room). However, peer-reviewed literature on the subject is relatively limited. As such, this study was designed to allow individuals with ASD provide information regarding their experiences as college students to inform future empirical work.

Recently, researchers conducted a systematic review of the existing peer-reviewed English language literature concerning postsecondary students with ASD [15]. Six participant characteristics (location of institution, sample size, diagnosis, gender, age, and IQ) were coded in addition to three college experience characteristics (socio-emotional, academic, and non-academic support). Only 20 studies met all inclusion criteria from an initial eligibility pool of 51. All but one described participants studying either in the United States or the United Kingdom. The participant pools were generally small; 90 percent of the literature included case studies. Asperger’s syndrome constituted the primary diagnosis in 75 percent of the participants, and 68 percent of participants were male. Anxiety, loneliness, and depression were the most frequently reported socio-emotional challenges at 71 percent, 53 percent, and 47 percent, respectively. Sixty percent of participants reported receiving academic supports (extended time on tests, lecture notes) and 45 percent reported receiving non-academic supports (peer mentors, assigned counselors). Because so few studies met inclusion criteria, the authors conclude that the current state on the topic is fragmented and understudied. More research is recommended in both determining effective postsecondary programming and prevalence of depression, loneliness, and anxiety in postsecondary students with ASD.

The goal of this study was to systematically investigate the experiences of college students with ASD. Three research questions guided this investigation: 1) what are the reported academic experiences of individuals with ASD who have sought college degrees; 2) what are the reported social experiences of individuals with ASD who have sought college degrees; and 3) what are the reported housing experiences of individuals with ASD who have sought college degrees?

Methods

Survey Development

To answer our research questions, an online survey was developed. The survey utilized for this study was developed after a comprehensive literature review [15]. The first author created a draft instrument, which was extensively revised based on the second author’s experiences as a self-advocate/college graduate with ASD. The third author also reviewed the survey before an expert in the field of postsecondary education and disability provided suggested revisions. The final version consisted of 35 Likert-scale questions and 13 questions about the demographics of the sample (see Appendix A). The final survey was uploaded into SurveryGizmo (www.surveygizmo.com), and the researchers tested the survey to ensure that the internal skip-logic of the survey worked appropriately.

Participant Recruitment

After receiving Human Subjects Institutional Review Board approval to conduct this study, self-advocacy groups, parent organizations, and postsecondary disability coordinator listservs were contacted and asked to forward to potential participants the study’s recruitment materials, which included the link to the online survey. Participants began by indicating their agreement with three screening statements: 1) I have been diagnosed with an autism spectrum disorder; 2) I have attended a college or university in pursuit of a 2-year or 4-year degree for at least one semester; and 3) I certify that I am at least 18 years old. Only individuals who indicated agreement with all three screening statements were allowed to provide responses to the remainder of the survey.

Eighty-six individuals began the survey. Sixteen were disqualified based on their responses to the first three statements, and 35 provided answers to only some of demographic questions. Because these individuals did not answer the Likert-scale questions, their responses were not analyzed. Thirty-five individuals completed the entire survey. The data from the Likert-scale questions and demographic questions were analyzed using descriptive quantitative methods. The open-ended questions were analyzed using an iterative coding process in which the first and second author reviewed the responses and coded them for relevant themes.

Results

Participant Sample

There was significant variation in this sample in terms of age, diagnosis, age at diagnosis, college major, and college grade point average (Table 1). The sample included 17 males (49 percent), 15 females (43 percent), and three individuals who did not specify (8 percent). The average age of the sample was 26, but a plurality of participants was between 18 and 22 years old (40 percent). Eighty-six percent of the sample identified as being Caucasian, and the entire sample indicated they were from the United States and English was their primary language. A majority of the sample indicated Asperger’s syndrome as their primary diagnosis (54 percent), and the age of diagnosis varied, with most individuals indicating diagnosis after middle school (54 percent), including 37 percent who were diagnosed after high school. The majority of the sample graduated high school after 2000 (n = 31; 89%).

Table 1

Demographics.

Variable	n	%
Gender
Male	17	49
Female	15	43
Did not answer	3	9
Age
18-22	14	40
23-27	9	26
28-32	7	20
33	4	11
Did not answer	1	3
Race/Ethnicity
White (including Middle Eastern)	28	80
Black/African-American	0	0
Hispanic/Latino	0	0
Asian	2	6
More than one race	2	6
Prefer not to answer	3	9
Primary Language
English	35	100
Primary Diagnosis
AS – Asperger’s Syndrome	19	54
ASD – Autism Spectrum Disorder (general)	8	23
HFASD – High-functioning ASD	3	9
PDD-NOS	3	9
Other	1	3
Did not answer	1	3
Age at Diagnosis
Infancy (Ages Birth-3)	4	11
Pre-School (Ages 3-5)	6	17
Elementary School (Grades K-6)	6	17
Middle School (Grades 7-8)	3	9
High School (Grades 9-12)	3	9
After High School	13	37
Country of Residence
United States	35	100
College Major
Liberal Arts	10	29
Undeclared	4	11
Social Science/Law	8	23
Science/Medicine	5	14
Education	3	9
Computers	3	9
Business	1	3
Other	1	3
GPA
Below 1.9	2	6
2.0-2.4	0	0
2.5-2.9	3	9
3.0-3.4	15	43
3.5	13	37
Did not answer	2	6

Twenty-eight individuals (80 percent) in the sample began their college studies immediately after high school. Fifteen individuals (43 percent) reported being current college students, and 14 participants (40 percent) reported at least having their bachelor’s degrees. Individuals in the sample reported a variety of college majors. Ten individuals (29 percent) reported being liberal arts majors, eight (23 percent) reported being social science/law majors, and five (14 percent) reported majoring in science/medicine. Four individuals (11 percent) had not declared majors. Three (9 percent) reported declaring majors in education and computers, and one individual majored in business.

Academic Achievement

Overall, the sample reported a high degree of academic success. The average reported GPA for the sample was 3.27, with 80 percent of individuals reporting GPAs above 3.0. Forty-nine percent of the sample reported having advanced placement or college credits earned in high school, and only five individuals (14 percent) needed to take remedial courses. Eighteen individuals (51 percent) indicated that they had enrolled for at least one semester as a part-time student. In response to the open-ended questions about academic experiences, one student said, “My professors have been very good; they appreciate my diligence and are willing to spend time outside of class discussing course content or expectations.” Another noted, “I went to community college first before transferring to university, and most of my experience has been pleasant. It was hard getting used to routines at first, and I was sick a lot.” This response typified the dichotomy of academic success with difficulties in the area of executive functions.

Disclosure and Disability Accommodations

The individuals in the sample indicated comfort with disclosing their disability, as the majority of individuals (69 percent) disclosed their disability within their first semesters. Twenty-nine of the sampled individuals (84 percent) reported disclosing their disability to someone at their college. Most of the disclosures were made to disability service coordinators (n = 28, 80%) and to professors (66 percent). Four individuals (11 percent) indicated they disclosed to other staff members. The sampled individuals may have been less comfortable disclosing to peers, as only 15 (43 percent) reported doing so.

The sample reported utilizing a range of postsecondary academic accommodations. Twenty-two individuals (63 percent) reported receiving extended time on tests. Seventeen (49 percent) reported regular meetings with their disability counselor. Fifteen (43 percent) reported taking tests in a distraction-free environment, and another 15 reported utilizing note takers. The additional accommodations (Table 2) ranged from social skills groups, course substitutions/waivers, preferential seating, or priority registration. Overall, 19 individuals reported these accommodations were at least somewhat similar to the accommodations they received in high school. It should be noted that two individuals indicated that they were not diagnosed until or after college so they did not receive high school accommodations. Four noted that accommodations were not offered to them in high school, while three noted they received new accommodations in college that they had not previously received. For example, one individual noted that he or she received a note taker in college while he or she had been allowed to use a computer to take notes in high school. While most individuals were positive about the offered accommodations, one individual noted that the “disability office has refused to provide specific accommodations that I need and requested.”

Table 2

Accommodations (responses to all of the Likert-scale items on the survey).

Variable	n	%
Assistive Technology	5	14
Books on tape or other recording	5	14
Calculator	6	17
Course substitution (e.g., in math, foreign language)	3	9
Course waiver (e.g. in math, foreign language)	1	3
Distraction free or reduced distraction testing environment	15	43
Extended time for assignments	7	20
Extended time for tests	22	63
Housing accommodations	11	31
Notetaker or photocopy of another’s notes	15	43
Priority registration	9	26
Preferential seating	9	26
Prearranged or frequent breaks	4	11
Readers	2	6
Real time captioning or transcription	2	6
Reduced course load	6	17
Sign Language interpreting	1	3
Meetings with Disability Counselor	17	49
Peer Mentor	5	14
Social Skills Courses	2	6
Other	7	20

Satisfaction and Social Experience

The sample’s satisfaction with their college experience varied, but their reported academic self-perceptions were greater than their social/emotional self-perceptions (Table 2). Eighty percent of the sample indicated agreement or strong agreement with the statement “I have the academic skills to succeed in college,” while only 41 percent indicated agreement with a statement about having the social skills to be successful in college. While the sample indicated overall academic success — 82 percent indicated they received good grades — they did note having difficulty with lectures, as only 38 percent of the sample agreed that it was easy to follow lectures. In addition, 36 percent indicated agreement with a statement that they managed their time effectively. Thirty-one percent indicated it was easy to focus when studying. Approximately 80 percent of the sample indicated that they were comfortable advocating for themselves, but only 50 percent indicated they were comfortable disclosing their diagnosis on campus. Overall, 71 percent indicated satisfaction with their disability service coordinator, while only 21 percent and 5 percent indicated satisfaction with career services and study abroad offices, respectively.

In terms of their social experiences, 97 percent of the sample indicated that they preferred to spend their time in quiet places on campus, while 29 percent indicated that they are “lost” on campus. Fifty-six percent indicated they are lonely on campus. Only 43 percent agreed that it was easy to get along with their roommates, and 50 percent enjoyed living on campus. At least one student found the presence of “quiet floors” helpful, explaining, “This has helped me be able to avoid noise that affects my sensory processing issues for the most part.” Thirteen students (38 percent) reported living in single rooms, with varying degrees of success reported. While one student reported becoming “more isolated” as a result of living in a single, another reported that he/she found success in a single room because he/she had friends living in the same housing group: “I like that I simultaneously have space to be alone if I need to but also am in a supportive environment of friends.”

Anxiety, Depression, and Experience of Discrimination

Only 31 percent of the sample agreed with the statement that they can cope with stress and anxiety. In addition, 61 percent agreed with a statement about feeling isolated on campus, while only 42 percent indicated feeling depressed. In response to the open-ended question, one student reflected, “In retrospect, I used my isolation to justify taking academics more seriously, but this didn't help me achieve more academically. My social life was non-existent.” Another commented, “Social life was very difficult in college. Not only was there not much to do in the surrounding area of the campus, I was never usually invited, nor did I enjoy attending crowded parties or bars or heavy alcoholic consumption. I felt that being in college, I needed to enjoy that in order to fit in so I never really found a niche.”

In addition to teasing, nine individuals (26 percent) reported some kind of disability discrimination on campus. One noted, “I had to leave the dorms, because I was being teased and taunted all day and night. I was the big joke of the dorm.” Another student indicated that “my psychology test literally had ‘autistics don’t use words like think or feel’ as a ‘correct answer’ on the test.” This student continued, “Even when I emailed my professor research showing this isn’t in fact true, she ignored me … and now is really passive aggressive with me and tries to intimidate me in class.” Another student recounted how he/she had been “told by the disability service office that I should quit getting an associate degree and work on getting a certificate.” Overall, these students must contend with having both the identity of college student and person with autism: “… [a campus organization] act as if ‘we’ (honors students) must work to help ‘them’ (autistic people). As if there’s no overlap.”

Discussion

Several themes emerged from the results of this survey. The first being that this sample reported academic success while struggling with the non-academic aspects of college such as navigating the social environment and difficulties with executive function skills, including study skills and time management. The implication of this theme is that students with ASD require comprehensive support in postsecondary environments in the academic, social, and psychological domains. The reported GPAs and relative number of students taking remedial courses indicate that this sample was well prepared for college academically. On the other hand, the sample reported loneliness and social difficulties. While the legally mandated supports are in the academic domain, it may be important for colleges to provide these students with opportunities to acquire more advanced social skills.

Some of the accommodations that have been offered to these students, such as designated quiet areas and living in single rooms, may have paradoxical effects. These accommodations may help support the individuals’ sensory/anxiety difficulties, but may also lead to isolation, suggesting that it is important to provide semi-structured social opportunities for these individuals. These individuals reported emotional difficulties related to anxiety and depression that have been documented in other samples of adults and adolescents with ASD [16,17]. These difficulties speak to the importance of offering emotional support to individuals with ASD in the form of developing social supports and offering counseling services. Further, as the individuals in the sample were unlikely to disclose their disability to peers, the importance of providing an inclusive/supportive campus will be crucial to the success of these students and will ease their efforts to become socially integrated.

This sample did report being comfortable with their instructors as evidenced by having a greater likelihood to disclose their disability to them. In the postsecondary literature, it has been well documented that there is a significant decline in the number of students who seek postsecondary services for their disability [18]. The disclosure of this sample exemplifies a second theme, which is the importance of self-advocacy and comprehensive support services as the sample reported utilizing comprehensive academic supports such as note takers and extended times on projects and tests. While this may reflect the recruitment efforts as the investigators targeted self-advocacy networks, the level of disclosure speaks to the necessity of comprehensive supports in order to achieve the aforementioned academic success. It also indicates the need for self-advocacy to navigate the college environment successfully. Their academic success may have been a direct result of the academic supports being provided and indicates that offering social/emotional support may increase the success of individuals with ASD in these domains.

While our sample did receive academic supports, the third theme from the data is that they did not receive as much support from ancillary service providers on campuses. Our sample indicated that service providers such as study abroad offices and career services were not helpful. Given the challenges facing individuals with ASD in securing and maintaining independent employment [9], the importance of receiving support from career services cannot be understated. Greater awareness and support of ancillary college agencies in providing training to support individuals with ASD is essential.

The fourth and final theme that emerged from our data is that individuals with ASD do not necessarily fulfill common stereotypes. Unlike Wei [11], our sample is primarily concentrated around the liberal arts, not science, technology, engineering, and math (STEM), which might introduce some additional considerations in education policy. Individuals with ASD may be mistakenly advised toward majoring in technology fields, when in reality they have achieved success in a variety of college majors. Understanding the interests of the individuals is very important when having these individuals participate in college/career planning. Further, while this group reported receiving extensive support from faculty, class discussions about ASD often did not recognize that members of the class may have ASD. In other words, while higher education professionals often study ASD, they often do not recognize that students in their classes may have ASD. It is important to welcome these students to campus and, as with other forms of diversity, they should recognize this when having a discussion about individuals with ASD.

There are several limitations to this study that should be noted when interpreting the results. As noted earlier, the recruitment strategy for this survey targeted self-advocates, which may not be typical of all college students with ASD. Their success may be attributable to a selection bias, as individuals who identify as self-advocates may receive greater supports and be more likely to develop relationships with instructors. In addition, successful college students may have been more likely to participate in this study. Future studies should utilize stronger sampling procedures and should seek out individuals who are not alumni or on the path to successfully completing college, such as individuals with ASD who have dropped out of college. These procedures could indicate barriers that face individuals with ASD, while this study highlighted what works for individuals with ASD. This use of convenience sampling is a limitation of this study as the generalizability of this study may be a concern.

Given these concerns, this study was the first according to the authors’ knowledge to systematically survey a large national sample of individuals with ASD who have pursued higher education. This sample reported academic success, which may have been facilitated by extensive academic supports. This sample also reported disclosing to disability service providers and faculty at rates typically not reported in the postsecondary literature. Difficulties in the social and emotional domains were also reported, and the supports for these services were less extensive. Institutions of higher education will have to effectively provide support for these challenges in order to effectively integrate individuals with ASD into their campus communities.