Abstract
With the increasing number of students with Asperger syndrome (AS) and high functioning autism (HFA) enrolling in college, it has become apparent that support services are greatly needed to assist these students in navigating college life, both academically and socially. Yet, there is a dearth of research describing the specific supports needed for this population. This exploratory study sought to determine the current support practices offered on college and university campuses for students with AS. A critical focus of this study was on the specific accommodations accessed and the support services provided, including support groups, counseling, supervised social activities, and summer transition programs. Both supports that were found to be helpful and not helpful are provided. In addition, recommendations for implementing support programs are provided.
Each year, colleges and universities are receiving an increasing number of applications for admission from young adults who are diagnosed with Asperger syndrome (AS) and high functioning autism (HFA; Chown & Beavan, 2012; Graetz & Spampinato, 2008; Nevill & White, 2011; Smith, 2007; Thierfeld Brown, Wolf, King, & Bork, 2012; VanBergeijk, Klin, & Volkmar, 2008) and it is assumed that this number will continue to rise (Langford-Von Glahn, Zakrajsek, & Pletcher-Rood, 2008). Children began to be diagnosed with these conditions in increasing rates in the 1990s. Because of early diagnosis and intervention, many of these students are now able to contemplate college (VanBergeijk et al., 2008; Zager & Alpern, 2010), whereas, over 20 years ago, this was not a viable option (Graetz & Spampinato, 2008). Pillay and Bhat (2012) indicated that increased numbers of students with AS on college campuses can also be attributed to laws, such as the Individuals With Disabilities Education Act (IDEA) and the Americans With Disabilities Act (ADA), and revisions to the Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSM-IV-TR; American Psychiatric Association [APA], 2000). Institutions of higher education (IHEs) have accepted these students for admission based on their excellent academic scholarship and many have assumed that their campus centers for students with disabilities and learning differences would handle any tutoring needs these students may have, similar to the way these centers have been assisting students with learning and other disabilities for the last 25 to 30 years. Unfortunately, students with AS and HFA present unique needs that differ in many respects from the needs of the students requesting accommodations for their learning disabilities, especially in the area of nonacademic supports such as social and emotional supports to deal with significant deficits in these areas and with the fear and anxiety that typically accompanies these conditions. Many IHEs currently are not equipped to handle these challenges (Dillon, 2007; Glennon, 2001; Graetz & Spampinato, 2008; Pillay & Bhat, 2012; M. J. Taylor, 2005) and often the college disability offices are already stretched thin in resources and staff (Wenzel & Rowley, 2010).
The Challenges
Teaching individuals with AS and HFA at the postsecondary level presents challenges because often these disabilities are not as obvious as other more commonly understood disabilities such as blindness and deafness. College faculty, staff, and other students may not be able to recognize AS and HFA and hence do not make accommodations or adjustments that are typically made for individuals with more obvious disabilities (M. J. Taylor, 2005). Furthermore, college personnel may not have received training to understand the complexities of these disorders (Graetz & Spampinato, 2008). Chown and Beavan (2012) indicated that “understanding autism is often counter-intuitive for neurotypical college staff” (p. 484) and they reported that Breakey (2006) recommended access to a specialist in autism to assist tutors who work with these students. The Autistic Self-Advocacy Network (ASAN; 2011) indicated that the “‘safety net’ in college for individuals on the autism spectrum is considerably weaker” than what it was in high school (p. viii). Moreover, the diagnosis of AS is often delayed and many individuals do not receive this diagnosis until adulthood. Therefore, college students may arrive on campus without the diagnosis or they may be misdiagnosed and not even realize that they need accommodations to be successful (Langford-Von Glahn et al., 2008; VanBergeijk et al., 2008). White, Ollendick, and Bray (2011) found that between 0.7% and 1.9% of college students at one university could meet criteria for HFA and they predicted that in the future, universities can expect to enroll more students who meet the diagnostic criteria but who have not been previously identified. Often students who have received the diagnosis of AS and HFA choose not to disclose their diagnosis and gain access to support services (Simmeborn Fleischer, 2012; M. J. Taylor, 2005) until a significant problem has arisen (Gobbo & Shmulsky, 2012).
Individuals with AS and HFA are considered to fall on the high end of the autism spectrum. However, they continue to struggle throughout adulthood with issues related to nonverbal communication and pragmatic language, social skills, repetitive behaviors, resistance to change, and sensory challenges that significantly impact their ability to navigate adult life (Dillon, 2007; Prince-Hughes, 2003). In addition, they demonstrate challenges with executive functioning skills and with understanding their emotions and the emotions of others (Wolf, Thierfeld Brown, & Bork, 2009). These challenges can impede their academic performance, which often leads to failure at college (Dillon, 2007). Morrison, Sansosti, and Hadley (2009) contended that these individuals have great potential to be productive and successful citizens, but realizing this potential may be impeded by challenges in the more fundamental academic and social requirements of college. Furthermore, the autism spectrum is a wide spectrum and each individual is different. Strategies that work for one individual may not work for another. Moreover, abilities within each individual vary widely and this uneven development presents challenges in delivering instruction (Farrell, 2004). Frequently, the challenges faced are in the areas of nonacademic issues such as social skills difficulties and gaining functional employment skills, including teamwork and public speaking. These challenges need to be considered as possible obstacles to students’ success (Camarena & Sarigiani, 2009; MacLeod & Green, 2009). While students may be academically competent, faculties need to be aware “that that the classroom is a social venue with social challenges” (Gobbo & Shmulsky, 2012, p. 41) and as such can be very challenging to navigate. Welkowitz and Baker (2005) described the college student with AS “like a boat without sails that has been set to sea” (p. 173) and they recommended a multifaceted peer mentoring program that offers social support and friendships and the promotion of interpersonal skills to assist these students in navigating the college environment.
The Positives and Recommendations
Despite these numerous challenges, individuals with AS and HFA typically possess average and above average intellectual abilities, interests in focused areas that they can develop expertise in, and a remarkable ability to think divergently (Dillon, 2007; Morrison et al., 2009). Moreover, Prince-Hughes (2002) stated that some of the behaviors in the diagnostic criteria “can become the underpinnings of academic success” (p. xxii). Individuals with AS and HFA may be passionate about studying, focus on academic goals, exhibit great attention to detail, and possess highly marketable skills (Geller & Greenberg, 2010). College can be a more positive experience than high school for some individuals with AS. One college student with AS commented that he liked college better than high school because his teachers were smart and he enjoyed his engineering courses (C. M. Taylor, 2011). Several adults with AS who have earned doctorate degrees have published information on their experiences navigating college. For example, Shore (2003) reported that he appreciated college and he met people who appreciated him. Prince-Hughes (2004) stated that she finally had a “wonderful school experience” when she found a doctoral program that would allow her to work in the solitary manner that she found essential (p. 180). Furthermore, she found that it was helpful to be prepared for all of her coursework before she took the actual class so that when she was in class she could then focus on the social aspects that were so challenging. Prince-Hughes (2002) also suggested that some students may need to take breaks from their academic studies that may last as long as a quarter or a semester. Willey (2000) offered several scheduling suggestions to help reduce anxiety for individuals considering college. She recommended that students with AS need to mark their calendars with the drop dates of courses in case they need to drop a course so that their grade point average (GPA) will not be negatively impacted. She also cautioned against scheduling classes consecutively if they are not in the same building and not scheduling classes earlier than the person’s routine wake up time.
Other recommendations reported in the research literature include the necessity of educating all college campus departments on AS and HFA and the impact that it has on the students (Browning & Miron, 2007; Fatscher & Naughton, 2012; Shackelford, 2010). Given the limited resources available on many campuses, Fatscher and Naughton (2012) pointed to the necessity to “think outside the box” and develop ways to share this critical information with others on campus (p. 41). This could be done by designing handouts that provide tips to faculty or by having short, informal information sessions over lunch. C. M. Taylor (2011) stated that as educators, “we must examine our own attitudes and be willing to help students develop their own rules for social interaction” to help these students thrive (p. 31). Shackelford (2010) reminded us that students with AS usually do not intentionally cause disturbances in the classroom or interpersonal problems with others. However, he recommended that colleges insist that students with this diagnosis have an individual behavioral assessment that describes their observed behaviors and provides recommendations for instructional and residential supports and accommodations.
Recommendations to assist students with AS and HFA include options tailored to the individual and not to the diagnosis (Thierfeld Brown et al., 2012) and the necessity of “advanced preparation with social skills, self-advocacy skills, and organizational skills in order to transition to postsecondary education settings” (Ciccantelli, 2011, p. 53). “No college is appropriate for all students with autism spectrum disorders, and no student is a good fit for every college” (Thierfeld Brown et al., 2012, p. 1). Thierfeld Brown and colleagues (2012) contended that the best predictor of student success is the “goodness-of-fit achieved and the planning that goes into the transition to college” (p. 1). The following suggestions have been given to support students with AS and HFA: Provide a quiet space on campus available 24 hr a day, encourage students with AS to tutor other students in their area of expertise (Browning & Miron, 2007), consider housing options and the advantages and disadvantages of a single room (Thierfeld Brown et al., 2012), use technology (Pillay & Bhat, 2012), provide assistance in organizing space in the classroom, and provide predictable class routines (Gobbo & Shmulsky, 2012). In addition, addressing executive functioning deficits and critical thinking challenges and decreasing anxiety in the classroom are all paramount to their success (Shmulsky & Gobbo, 2013).
Need for More Research
Currently, there is a dearth of research on the types of accommodations that are beneficial to college students with AS and HFA (Langford-Von Glahn et al., 2008). Smith (2007) indicated that Disability Student Services (DSS) offices are persistently searching for information to help them in building and improving the quality of their programs, but there is little information available specific to AS and HFA. To this end, Smith recommended that further research is needed to determine the needs of these students, the services and accommodations available to these students, and the services and programs that are advantageous to this population. Smith conducted a survey of postsecondary IHEs that were members of the Association of Higher Education and Disability (AHEAD) to ascertain specifically what accommodations and programs are currently offered to students with AS at IHEs. She randomly selected 102 disability offices out of 1,706 postsecondary institutional members of AHEAD. However, initially less than 5% of the possible 102 participants responded to the email survey. Surveys were then faxed to 66 of these programs and approximately one third of those programs responded. None of the institutions surveyed provided support group services and the accommodations provided did not address the specific needs of students with AS. Most IHEs surveyed provided students with AS with an alternate testing location if needed and extra time on tests. Clearly, more research is needed in this critical area. Students with AS and HFA are continuing to apply to and are enrolled at IHEs and yet we still do not clearly know how to best serve them, capitalize on their strengths, accommodate for their challenges, and retain them in college and university programs.
This exploratory research expanded on Smith’s (2007) research and recommendations to ascertain the services and accommodations that are currently being provided for this population of students so that Disability Services offices could use this information to improve their programs and support services. Another aim of this exploratory research was to determine the components of successful college and university programs that provide support services for students with AS and HFA. The projected long-term benefits associated with these research findings are increased retention rates on college/university campuses for students with AS and HFA, which would benefit the students, their families, the IHE, and society, and this information may assist IHEs in attracting to their student body this bright population of students who have tremendous potential. Colleges and universities that indicated in the research literature or on the Internet that they offered structured programs for students with AS were contacted to complete an interview via the telephone or in person to determine which components of their programs contributed to their students’ successful navigation of campus life and which components did not contribute to student success. Institutions that provided only transition to college services for students with disabilities or only served students with disabilities were not contacted since the focus of this research was on IHEs that included students with AS in their student body. The objective of this research was to gain a clearer understanding of how to best assist these students in successfully navigating college life, both academically and socially.
Methods and Procedures
Instrument
A survey was developed by the author after a literature review of the current research in the area of supports for students with AS was conducted. The survey was then reviewed by several colleagues and modified based on their suggestions. The final form consisted of 20 questions, several with multiple parts. The first section of the survey requested demographic information in a forced-choice format, including the type of institution (public or private; junior/community college or minimum 4-year college/university), total college enrollment, current enrollment for students with disabilities, and current enrollment for students with AS or any autism spectrum disorder (ASD). Although the original intent was to investigate programs specifically for students with AS, it became apparent that the majority of the specialized programs served students with AS along with other students on the autism spectrum. The second and longest section of the survey focused on the support services provided for these students. The forced-choice questions asked the length of time-specific services for this population had been in place, the approximate percentage of students with AS or ASD who accessed these services, and which of the accommodations and supports from a provided list were accessed by these students. The next set of questions required open-ended responses and inquired as to whether the institution offered an AS or ASD support group, counseling services, housing accommodations, planned supervised social activities, and any other specialized supports for these students. If the respondents answered yes to any of these questions, they then were asked to describe the support services. The next questions in this section asked which supports had been helpful to students with AS or ASD and which supports were not found to be helpful. The respondents were then asked to describe any supports or services that they had modified. The following questions asked whether there were additional fees for these services and, if so, to indicate the cost. The last two questions in this section were forced-choice questions with an “other” option that asked how faculty were educated about AS and ASD and which campus departments were also educated.
The third section of the survey requested information on outcomes, including the number of students graduated, the percentage of students who completed their degrees, and the length of time taken to complete the degree. The last section of the survey asked about the extent of parent involvement and the final question asked the respondent to describe any other information that may be helpful to other institutions interested in developing effective programs for students with AS and ASD.
Procedures
An Internet search for colleges and universities in the United States that offered specific support for students with AS was conducted. In addition, a review of the research literature indicated several IHEs that reportedly offered additional specific services for this population. Based on this information, a list of 45 colleges and universities was developed. The researcher then phoned and sometimes emailed the contact persons indicated on the IHE’s website and the Disability Services office to invite them to participate in this research study. Thirty-one of the 45 schools contacted indicated that they had specific support services above and beyond services typically offered by college or university disability offices. Thirty of these IHEs agreed to complete the survey. Several of the 14 contacted schools that currently are not providing additional support services for this population indicated that either they tried to have an AS or ASD support group for their students but it did not work, or they had an outside organization such as AHEADD (Autism, AS, and Attention-Deficit/Hyperactivity Disorder [ADHD] Support for College Students) provide the services in the past, or that they had a program but the grant money was no longer available. Two institutions indicated that they were currently conducting research to determine what supports would best meet the needs of these students. Telephone interviews to complete each survey averaged 45 to 50 min in length.
Results
Demographics
Nineteen (63%) of the 30 colleges/universities that offer specific supports for students with AS and ASD were public IHEs and 11 (37%) were private IHEs. Twenty-eight (93%) of these IHEs offered bachelor degrees and graduate programs. Two (7%) of the 30 IHEs offered associate degrees. Twenty-two of the IHEs (73%) indicated that their total student enrollment was greater than 10,000 students, with 7 of these IHEs reporting student enrollment greater than 25,000. Almost one third of the IHEs indicated that 500 to 749 students self-disclosed that they had an identified disability (could be any disability) and slightly more than one third of the IHEs reported that they had more than 750 students who self-identified with a disability. Most IHEs reported that the number of students who indicated that they had a specific diagnosis of AS was probably an underestimate as not all students disclosed this information. Twenty-nine of the 30 IHEs indicated that from less than 1% up to 18% of the population of students who identified as having a disability reported that they had AS or ASD (median = 5%). The most frequent percentage of students with ASD or ASD reported when compared with the total population of students with disabilities was 7%. Two IHEs reported that 18% of their students with disabilities had AS or ASD. One IHE reported that they did not have data on the number of students with disabilities on their campus. Fifty percent of the IHEs reported that more than 30 students identified themselves as having AS or ASD. Almost 37% of the IHEs had 6 to 30 students identified with AS or ASD and approximately 13% indicated that they did not have data on the number of students with these conditions attending their institution.
Not all students who identified as having AS or HFA at the IHEs were enrolled in a specific ASD support program. Slightly over 56% (n = 17) of the IHEs reported that students self- selected for their support programs and slightly over 43% (n = 13) of the IHEs had a selection process to determine which students would be appropriate for their support programs. A little over 63% of the IHEs stated that they served 1 to 30 students with AS or ASD in specific support programs, and 30% of the IHEs reported that they served more than 30 students with AS or ASD in a specific support program. Once accepted into the IHE, students had full access to campus activities. One IHE explicitly reported that they currently served students diagnosed with AS in their support programs, whereas the other IHEs indicated that they served various students on the autism spectrum, including AS, who met their IHE’s admission criteria. Students with AS or ASD needed to first be accepted at their respective IHE through the traditional admission process at all of the IHEs, except for one, before being accepted into a special support program. The one exception was a community college that offered a summer program independent of the student’s acceptance to the community college. The one IHE that required a diagnosis of AS for admission to their support services also reported that they may need to consider accepting students with any ASD into their support services in the future given the changes in the DSM-5 (5th ed.; APA, 2013).
One university with a total student enrollment between 10,000 and 24,999 reported that their Disability Services office served 550 students identified with a disability and more than 100 of these students indicated that they had AS or ASD. This university stated that “disability is highly regarded on campus” and that the impetus for starting a program to serve these students came from the issues the students presented with executive functioning skills and behavioral challenges in the dormitories. Other IHEs reported the following reasons for initiating specific supports for this student population: College President requested a specific program based on the College’s social justice mission; students requested help with life coaching, executive functioning and campus rules; faculty or staff member had a passion for this population; parent of child on the spectrum initiated a request for supports; and grant money was available for this population (see Tables 1–3).
Characteristics of Colleges/Universities (N = 30).
Students Identified With AS and ASD in Institutions (N = 30).
Note. AS = Asperger syndrome; ASD = autism spectrum disorder.
Students With AS and ASD in Specific Programs (N = 30).
Note. AS = Asperger syndrome; ASD = autism spectrum disorder.
Forty-seven percent of the IHEs (n = 14) surveyed indicated that they have offered specific support services for this population for more than 5 years while two IHEs were in their first year of program implementation. Five IHEs offered services for the past 1 to 2 years and nine IHEs offered services for the past 3 to 5 years. Forty percent (n = 12) of the IHEs indicated that 100% of the students with AS or ASD enrolled in the specific support program regularly accessed these services. Thirty percent (n = 9) of the IHEs reported that 75% to 99% of the students with AS or ASD regularly accessed the services; 26% (n = 6) reported that 50% to 74% of the students with AS or ASD regularly accessed the services, and 7% (n = 2) reported that approximately 26% to 49% of the students with AS or ASD regularly accessed the services. One institution did not have data on the percentage of students with AS or ASD who accessed the support services. It is interesting to note that the institutions that reported less than half of the students accessed specific support services did not charge a fee for these services.
Accommodations and Supports
Respondents indicated that students with AS and ASD typically accessed the following 13 accommodations and supports, with the first four listed as most commonly accessed and also available to all students with disabilities if they demonstrate a need for these supports and accommodations: advisor, extra time on exams, alternate testing site when appropriate, tutoring, note taker, technology supports (i.e., Dragon NaturallySpeaking, Smart Pens, etc.), preparation for employment, reduced course load, copy of professor’s notes, instruction in life skills (e.g., budgeting, laundry, sexuality, hygiene), social skills instruction, assigned peer mentor, and priority registration. Several IHEs indicated that with the increased use of online technology resources such as Blackboard and Moodle, professors’ notes were often available to all students. Some programs offered specific intensive academic tutoring specifically for students with AS or ASD while others referred students to the tutoring programs that were available to all students. More than 75% of the IHEs indicated that students with AS or ASD typically accessed technology supports, a reduced course load option, preparation for employment, professors’ notes, life skills instruction, and social skills instruction. Many of the IHEs referred students to career services for employment preparation and several IHEs indicated that their programs were still new and that employment issues would be addressed later in the student’s college career. Seventy-three percent (n = 22) of the IHEs reported that students with AS and ASD accessed peer mentors and priority registration, and 63% (n = 19) reported that students accessed social coaches. Seventy percent (n = 21) of the IHEs stated that sometimes students were permitted course substitutions if the course was not a required course; however, course substitutions were not frequently used (see Table 4).
Accommodations for Students With AS and ASD (N = 30).
Note. AS = Asperger Syndrome; ASD = autism spectrum disorder.
Accommodations not frequently provided included extra time for assignments. Most IHEs indicated that they worked individually with the student on executive functioning skills so that students could learn to manage their assignments in a timely manner. Also when group work was an issue for a student, the most frequent approaches were to assist the student in problem-solving strategies to cope with social anxiety and practice how to approach a professor with one’s concerns rather than allow the student to be excused from group work. There was an option for the respondent to add and describe other accommodations and supports not already listed on the survey. The following additional accommodations were noted by some IHEs: individual planners; scripts; in-house alternative format lab; vocational assessment; a learning strategist (graduate student) offered academic assistance twice per week; mental health counselor; preferential seating; instruction regarding medications and sleep; readers for tests; intensive case management; support focused on executive functioning skills, anxiety management, and problem solving; person-centered planning approach; accommodations for sensory needs without penalty; additional clarification from professor without penalty; and the suggestion that students take the required freshman seminar the first semester of freshman year rather than the second semester. Several IHEs also noted that they purposely were weaning students from supports as they progressed in their college career so that they could be more independent upon graduation. A few IHEs reported that they were considering changing their fee structures for supports and services to a tiered structure so that they could charge less when fewer supports were accessed. Eleven IHEs reported that they did not charge for specific supports for students with AS and ASD, except several charged if counseling was accessed and there was a fee for the freshman seminar course. Most IHEs charged a fee per academic semester and a few charged a fee per academic quarter. When fees were analyzed on a yearly basis, they ranged from a low of US$1,050 per year to a high of US$17,400 a year above the standard tuition and room and board fees for all students. Only two IHEs charged more than US$10,000 extra per year. The average yearly fee for the IHEs that charged for these additional services and supports was US$6,525.
Regarding specific support services, 15 (50%) of the IHEs offered social skills groups specifically for individuals with AS and ASD, 13 IHEs (43%) offered individual therapy, 5 IHEs (17%) offered group therapy, and 4 IHEs (13%) offered nontherapeutic groups. In addition to encouraging students with AS and ASD to join already existing campus clubs, 17 (57%) IHEs offered supervised social activities for these students. These activities included participating in a fund-raiser with another campus group, lunchtime games and socials, an ice cream social, off-campus trips, dinners, movie night, game night with peers, a social recreation group in the community, bowling, travel to museums and arcades, hanging out together in the community, taking public transportation into the city, and watching their peers perform in concert band. Popular clubs to attend were anime, larping, and history. Twenty-three (77%) of the 30 IHEs offered the option of housing accommodations to students who needed them. Frequently, the accommodation request was for a single room or a suite with a separate bedroom and a shared bathroom and living area (see Table 5).
Support Services for Students With AS and ASD (N = 30).
Note. AS = Asperger syndrome; ASD = autism spectrum disorder.
Summer Transition Programs
Seven of the 30 IHEs (23%) offered summer transition programs for students with AS and ASD that ranged in length from a 3-day orientation program separate from the IHE’s orientation for all incoming students to a 6-week summer program. Two IHEs reported that Vocational Rehabilitation paid the summer transition program tuition for many of their students. This researcher visited and participated for 2 days during the last week of 1 IHE’s 3-week summer transition program for 21 students specifically diagnosed with AS ranging in age from 17 to 22 years. Students resided in the dormitory and every third room on the dorm floor was occupied by a senior peer mentor. College-age peer mentors were hired to work 35 hr per week with the participants during one of three shifts: Shift 1 from 7:30 a.m. to 1:00 p.m., Shift 2 from 12:30 p.m. to 6:00 p.m., or Shift 3 from 5:30 p.m. to 11:00 p.m. The senior peer mentors took turns sharing overnight supervision. Nineteen staff were able to successfully support 21 students with AS. The students took a three-credit college course (Human Growth and Development) for 3 hr each weekday morning after breakfast. Then they had free time for 1 hr prior to lunch in the dining hall. Lunch was followed by a 90-min mini course taught by individuals renown in their field. Some examples of mini courses included learning about computer-generated art, epidemiology, meteorology, earthquakes and tsunamis, music therapy, and forensic science. The students then participated in social skills instruction, which was followed by free time and then dinner. After dinner, students participated in a study hall where they could receive academic assistance and tutoring. Several other optional activities, such as going to Wal-Mart and listening to music bands downtown, were offered. Lights out was at 10:30 p.m. Activities off campus were offered over the weekends. Students learned to do their own laundry, manage their time, and participate socially with others as well as complete a college course during this 3-week period. Students were able to make choices and opt out of two mini sessions and two social skills classes, but they needed to attend the rest of the required activities.
Students received an estimated GPA on their academic, social, emotional, and independence skills assessed during their initial interview with staff and their parents prior to being accepted into the summer transition program. Not all students who applied to the transition program were accepted. The students who participated in the summer program then received a post-GPA at the end of the 3-week program based on their academic, social, emotional, and independence performance. They were each given blister packs for their medication and they were expected to independently take their medication. Peer mentors could look at the blister packs to see if the medication was taken. In addition, students were rated individually on their daily participation and attendance in the following activities: human development class, mini sessions, social skills class, college 101 (overview of how college operates), and a daily report card (DRC) on the progress on the two goals that each student selected during his or her intake interview with the staff and parents. Notes were recorded by the peer mentors during the three shifts in the domains being assessed. Parents also received a written report describing their child’s performance and strengths and areas of concern including recommendations at the conclusion of the program. The program directors indicated that they modified the summer transition program each year based on feedback received and the data collected. Furthermore, they planned to use the summer assessment and data collection tools as a model for their support program during the academic school year in the future.
Additional Supports
IHEs were then asked to describe other supports and programs in addition to support groups, counseling, social activities, and summer transition programs that they offered for this population. The most frequent responses were a specific seminar class for students with AS or ASD to address their unique concerns and the use of paid graduate assistants to support the students with academic and social concerns. Some IHEs awarded one college credit for the seminar class while others did not. One program used the book Aquamarine Blue (Prince-Hughes, 2002) to stimulate discussion in the seminar class. Students with AS or ASD also acted similar to anthropologists studying culture by observing neurotypical students meeting others in the campus student center and then reporting in their discussion groups what they had observed. Several IHEs shared that they offered specific employment support such as assessment for employability or partnering with organizations such as Family Services, Vocational Rehabilitation, or Specialisterne (organization founded in Denmark to provide employment for individuals with ASD). Still others offered additional academic and social supports that included a safe place on campus for students to meet, daily supervised study hall, life coaching, and the development of a person-centered plan that was similar to the Individualized Education Program (IEP) that students had in secondary school. Another support mentioned was partnering with the speech/language department for a conversation club led by graduate students. Another program director reported that he conducted functional behavioral assessments (FBAs) to develop a behavior intervention plan (BIP) when needed in the classroom. Shackelford (2010) recommended that IHEs conduct FBAs for students with AS to assist with instructional and residential supports.
Helpful and Not Helpful Supports
IHEs were asked which programs were found to be most helpful for students with AS and ASD. Again open-ended responses varied and included a focus on individualizing services based on specific student needs, asking students what they need, offering a specific seminar course, tracking student progress closely, collaborating with key people on campus such as the Dean of Students and the residence hall assistants, offering individual and group counseling and monitoring, providing a liaison to guide students to clubs and campus activities, training mentors extensively (one IHE used the Ohio Center for Autism and Low Incidence Internet modules to train), and providing social skills classes focusing on time and stress management, role-playing interactions with professors, and relationship and dating advice. Several IHEs found that the social skills classes helped decrease anxiety and decreasing anxiety appeared to be a predictor of success. Additional supports noted to be helpful included working with high school counselors prior to arrival at college to prepare students, escorting students to classes during the first 2 weeks of the semester, providing visual supports and schedules (daily and weekly), using study tables, addressing past bullying, and providing a seminar for parents in May prior to the summer transition program. Furthermore, intentionally providing intensive supports for three semesters and then fading supports was noted to be beneficial to students’ independence.
While many IHEs reported the benefits of social skills training, several others reported that providing social skills instruction and/or support groups proved to be challenging and sometimes ineffective. For example, they indicated that some students stated that they did not want a specific support group because they did not want to “hear the same old stuff.” One IHE shared that they attempted to start a support group for females with AS but the leader was a male and the group disbanded. Another IHE commented that students did not show up at the expected time or day of the support group and they also found that breaking social skills down into component steps was not helpful for the college students. Other areas of challenge included cooperative experiences such as internships, setting up social activities for the students, and setting a specific time for study groups that was challenging because students had different time preferences. One IHE did not receive professor feedback on grades, attendance, and accommodations as frequently as they desired, so they created easier forms (e.g., online survey on Blackboard) for the professors to complete. Several IHEs indicated that online courses were more difficult because of motivation challenges, while others stated that online courses were beneficial for some students. There was no consensus on the pros and cons of online instruction for this population. Another IHE commented that social support alone did not work and a comprehensive program that included academics and executive functioning skills was needed for this population.
As a result of some of the challenges experienced, several IHEs reported that they made several modifications to their support program including only accepting students that they believed they could support. Having students with very diverse skills proved to be challenging for one IHE and led to this change. Others added a seminar class to assist with cooperative experiences, created groups of varying class levels rather than separate groups for freshmen and separate groups for sophomores, and they kept support groups small with no more than six members. Other IHEs reported that they changed their instructional focus to executive skills, social skills, perseverance, study skills, time management, and the use of technology and self-advocacy. Other themes reported included the realization of the importance of including parents, asking students what supports they wanted and needed, and requiring the volunteer mentors to commit to 1 year of service to provide continuity for the students. One IHE created a quick tips sheet for social skills at the students’ request rather than provide a detailed structured social skills lesson. One summer transition program discontinued providing lunch due to the diverse food preferences.
Over 83% (n = 25) of the IHEs indicated that faculty were educated about AS and ASD through one-on-one discussions with the specific support program coordinators or the Disabilities Service Office staff. In addition, two thirds of the IHEs reported that they provided group workshops for faculty on AS or ASD although it was often challenging to schedule group faculty presentations due to conflicting teaching schedules. Ten percent of the IHEs provided a newsletter specific to AS and ASD and other IHEs stated that they provided a tips sheet or PowerPoint presentation about AS and ASD on their website to educate faculty and staff. A key point highlighted by most IHEs was the need for collaboration among all departments on campus to serve this population of students effectively. Eighty-seven percent of the IHEs educated Residence Life staff and 70% of the IHEs educated Student Health, Counseling and Academic Advising staff. Other campus departments that received some training and education about AS and ASD included Campus Security, Judicial Affairs, and the Writing Center.
Outcomes Data and Recommendations
Several IHEs reported that they would like to start collecting outcomes data in the future on the graduation rates and postcollege employment of their students with AS and ASD. Most IHEs did not have outcomes data on the number of students with AS and ASD who graduated. Several, but not all of the IHEs, reported that students with AS and ASD typically took longer than 4 years to graduate from the 4-year institutions and also longer than 2 years to graduate from the 2-year institutions. It is interesting to note that one IHE stated that the students in the ASD support program had a 90% retention rate from the first to second year, which was higher than the overall retention rate for the IHE. Another IHE reported that they had served 77 students with ASD over the past 11 years (including the 43 students that they are currently serving) and 28 students graduated in an average of 5 years and more than half of those students were employed and several were attending graduate school. They also indicated that although they accepted students with ASD into their AS support program, those diagnosed with AS typically were a “better fit.” Furthermore, most of the students in their support program were out of state residents. A different IHE indicated that their students with AS and HFA typically graduated in 5 years and their retention rate was 78% to 84% compared with their overall university retention rate of 69%. Other changes several IHEs wanted to implement in the future included developing a summer transition program and charging for the additional support services provided during the school year.
One IHE indicated that students who lived within 2 hr of their university typically had better outcomes than students who lived further away. This may be due in part to family involvement. Morrison and colleagues (2009) reported that the role of parents in advocating for their college-bound child with AS is notably missing in the research literature. However, this research study revealed that several IHEs reported that parents were their greatest resource and they were relied on as they knew their child best and could offer valuable insights. Furthermore, many IHEs viewed parents as partners in their student’s program. Many IHEs required students with AS or ASD to sign a consent form for the college personnel to be able to speak to their parents. However, parents were also cautioned that their adult child would be working on learning self-advocacy skills and that it was often the student’s responsibility to contact the parents rather than the IHE. Parents were typically included in the intake interviews for the ASD support programs. The amount of parent involvement varied greatly among the IHEs. For example, one IHE communicated with parents through weekly emails at the beginning of the freshman year and then decreased this to twice a month and then once per month while another IHE had the peer mentor and the student with ASD call the parents once a week. Other IHEs offered a parent information session either in the summer or at the beginning of the semester and another had group parent meetings 2 times a semester. Another IHE had an end-of-semester celebration with the families and used this activity as an opportunity for the students with AS to practice social skills by interviewing other parents.
Finally, respondents were asked to describe, based on their experiences, any additional information that might assist other IHEs in developing effective programs for students with AS and ASD. The most frequent responses stressed the importance of a teamwork approach built on networking and collaboration with the entire campus, services built into the community and community partnerships, the peer mentor’s relationship with the student, intensive training for the peer mentors, passion that is required for this work, collaboration with the students and their families to determine what they need, and reminders to parents and students that the students are adults and need to learn self-advocacy skills. Additional suggestions provided by the IHEs can be found in the appendix.
Conclusion/Discussion
Colleges and universities clearly indicated that support services for students with AS and ASD are greatly needed. A comprehensive, flexible approach that is individualized based on the student’s unique needs appears to be integral to a successful program. Respondents indicated that the individuals implementing the support programs needed to be passionate about working with this student population due to the intensive time and emotional demands this work entails. Collaborating with all campus departments and the parents is essential. It is also critical to assess the program each year and modify the supports and services based on the data collected. The need to collect data on student retention, graduation, and postgraduate outcomes was voiced by the majority of the IHEs. Very few IHEs had outcomes data. More than half of the IHEs had been providing services for less than 5 years, so they did not have outcomes data given that many of their students had not yet graduated. Several IHEs also indicated that students with AS or ASD did not enroll as a cohort and some took breaks from college and then returned, making it difficult to track their progress. Hurewitz was cited by Jones (2012) as stating that it would take approximately 5 more years to track these students to determine how beneficial their college experience was given that many programs were still in their infancy. It seems logical that a deliberate focus on collecting data regarding students’ progress is the next step in evaluating the effectiveness of the supports provided during their college experience. The two IHEs that reported retention data distinctly demonstrated that the students with AS or ASD who received supports stayed in college at a higher rate than the students with and without disabilities who did not receive additional supports.
Other key findings were that resource limitations including lack of funding and professionals trained in ASD appear to be barriers to implementing support programs for these students and there is no consensus on the best approach to provide supports. The impetus to start a support program for students with AS or ASD typically derived from a passion to serve these students that was either initiated by a parent of a child with AS or ASD, faculty who desired to work specifically with this population based on their research interests or faculty who were approached by students requesting assistance for executive skills challenges and life coaching, or it was part of the mission of the IHE. Many programs began with one to four students initially and then grew larger as their programs developed and expanded. Most of the IHEs were not serving all of the students who indicated that they had AS or ASD in their specific support program due to budget and staff constraints. The majority of the schools in this study that offered a specific program for students with AS or ASD had total student enrollments of over 10,000 students, with only 10% of the IHEs having enrollments of 1,000 to 4,999 students. A possible explanation is that larger universities may have more staff and financial resources to pilot a support program than smaller IHEs.
The support services currently offered varied tremendously among the IHEs as Smith (2007) found. However, there clearly were more supports currently available for this population of students than Smith found. Part of this variability appeared to be due to resources, including financial support for programs and staff. Several IHEs indicated that they would need to charge a fee for their support services in the future to meet the needs of the students, and several were considering a tiered fee structure with the intent to charge less each year as the services were intentionally faded to promote independence. However, several respondents indicated that AS- or ASD-specific programs could support themselves independently from the IHE with a modest fee for services and/or grant funding. Also, this research revealed that more students with ASD accessed the support services at IHEs that charged a fee for their supports. Peer mentors working with students with AS or ASD appeared to be a critical component of almost three fourths of the programs surveyed. Many respondents conveyed that it was more natural for the students with AS or ASD to bond with the graduate mentors than with the support program directors. Some IHEs had the peer mentors function as academic coaches, whereas others had the peer mentors function as liaisons between the students and their professors and also serve as social coaches. Those who functioned as social coaches often integrated the students with AS or ASD into their social support network. Two IHEs disclosed that graduate mentors resided in the dorms with students with AS or ASD to provide social support. Peer mentors were typically graduate students who were recruited from psychology, special education, school psychology, applied behavior analysis, or social work departments. Several IHEs reported that the graduate students were paid through stipends and/or through tuition assistance while others stated that the peer mentors were not paid but were receiving needed internship hours. It would appear that IHEs having funding challenges may want to consider training graduate students who need to complete internships as part of their degree requirements to become peer mentors for students with AS. One IHE indicated that their peer mentoring program was facilitated by an honor’s fraternity. Other possible cost savings options for IHEs include partnering with Vocational Rehabilitation to provide support services to these students. One IHE was successfully working with a Vocational Rehabilitation counselor who provided weekly support services, including an ASD support group for students, on several of their branch campuses. Other options are to partner with businesses and community agencies for counseling services, and to apply for grants. One IHE reported that they were waiting to hear if a grant that they applied for through Autism Speaks had been approved to assist them in analyzing the effectiveness of social mentoring. Training the peer mentors and providing regular supervision as well as obtaining a commitment from the mentors was an integral part of the reported effectiveness of the support programs.
It is interesting to note that although the hallmark area of challenge for individuals with ASD is social skills, some supports in this area were often cited as not helpful or challenging to implement. Having a support group specifically for students with AS or ASD seemed to be the most difficult support to maintain. However, several IHEs found that offering a seminar class to address social issues and executive skills was a successful strategy. Students voiced the concern that they had participated in numerous social skills instruction classes prior to college and therefore were not interested in attending support groups that focused on this area. Social skills may best be addressed in a college seminar setting taken for credit that focuses on problem solving and also in the natural setting when supervised social activities are taking place. This might entail training the peer mentors to design and facilitate situations during these social activities for students to practice the necessary social skills without making it a didactic classroom experience that looks like the previous instruction they have received and labeled “tedious.” In addition, having a male and a female facilitator in the seminar class or support group may be beneficial in providing different social perspectives, especially in the areas of dating and relationships. It also appears imperative that students receive specific training in self-determination, self-advocacy, executive functioning skills (including managing time, stress and anxiety), and in daily living skills prior to arriving at college. It was not rare for IHEs to find that students had not been taught or required to do their own laundry prior to college. Pre-service teacher training programs would need to emphasize social skills instruction in their curriculum so that teachers would be equipped to teach these critical skills to their secondary school students. College personnel could also visit secondary schools and parent groups to stress the importance of teaching the skills necessary to be successful at college. One IHE indicated that this could be done more frequently if there were more resources available. Clearly, more research is needed in the area of social skills that focuses on the best methods of instruction and employs pre- and post-intervention data collection to measure change.
Future Considerations
As support programs for students with ASD continue to increase and expand, several issues will need to be addressed. For example, what is the best way to balance the integration of these students into the general college population so that they are not segregated and isolated and at the same time provide them the needed supports that may require instruction in a more individualized manner? A few IHEs who were not providing specific support programs for these students stated that this was purposeful because their philosophy was not to segregate students but to keep them in the mainstream. However, other IHEs that offered specific supports for this population provided individualized assistance with trained and supervised graduate students that did not lead to segregation. Furthermore, is there a need to develop more structured admission criteria to these specific support programs to determine which students might be best served and is there a need to develop summer transition programs to assist students in developing the required skills to be successful at college? Several IHEs noted that they needed to have structured intake procedures and interviews to determine if their program was a good fit for prospective students and other IHEs noted that they had more applicants than they could serve, so they needed to be selective and develop admission criteria. Some IHEs offered summer transition programs as an opportunity for high school juniors and seniors and students who attempted college in the past and were not successful to experience college life as well as to assess their readiness for college and to provide this feedback to the students and their families. Reportedly, parents and students found this readiness assessment at one IHE’s summer transition program valuable in planning for college. Research has definitively indicated that students with ASD will continue to arrive at colleges in increasing numbers. Therefore, it appears imperative to address these issues.
Limitations
One limitation to this study was that the Internet did not always provide the most current information on support programs specifically for students with AS. Approximately one third of the IHEs listed as having support programs on the Internet and in the research literature did not currently offer a structured support program for students with AS. It was also determined that the majority of the current programs served students with ASD, including AS, rather than exclusively serving students with AS. Also, the researcher became aware of several IHEs that were considering implementing support programs and were in the initial stages of designing a needs assessment. It would be important to follow up with these IHEs in the future to find out what they learned and what supports they implemented. This current research was exploratory in nature given that providing supports specifically for this population is a relatively recent endeavor. Clearly, more research is needed to determine which supports are beneficial so that these students’ talents can be nurtured and they can find success in navigating college life.
Footnotes
Appendix
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The author received $900 from the Summer Research Grant Program at Lynchburg College toward traveling expenses for this research project.