Supports and Resources Valued by Autistic Students Enrolled in Postsecondary Education

Abstract

Background:

Autistic students may seek out additional supports to successfully complete their postsecondary education. While all institutions of higher education in the United States offer disability-related supports, some schools provide targeted services specifically designed to meet the needs of autistic students.

Methods:

This study used qualitative and quantitative methods to identify supports most valued by autistic students seeking a postsecondary degree. We interviewed 12 postsecondary students enrolled in a postsecondary education support program at a single university. We also reviewed student visitation records from the program to identify the nature of supports provided to students during an entire academic year.

Results:

Three primary themes emerged from the data. Students valued Individualized Services, which may include guidance, one-on-one meetings, and advocacy from program staff. A second theme, A Place to Call Home, recognizes the value of a dedicated space where students can complete work, engage socially, and surround themselves with other people who understand autism. In addition, the theme Supports Outside of the Program highlights the importance of services autistic students receive beyond those provided by the autism-specific program.

Conclusions:

Students enrolled in postsecondary education value supports offered by a program designed for autistic students and supports offered through disability services. Professionals interested in developing programs to support these academic endeavors should focus on the delivery of supports tailored to the unique needs of individual students. In addition, offering a physical location that offers an autism-friendly environment is an important feature of a support program for autistic students.

Lay summary

Why was this study done?

Autistic students may struggle to be successful in the traditional structure of higher education in the United States. As a result, they are not afforded the benefits associated with completion of a college or university degree. To address this, some institutions of higher education are developing programs to support the success of autistic students.

What was the purpose of this study?

The purpose of this study was to better understand the kinds of supports (academic or otherwise) valued by autistic students enrolled in higher education. This information can help guide the development of programs and other support mechanisms for autistic students. Programs with limited funding can use these findings to identify critical components of a program to support autistic students.

What did the researchers do?

The researchers collected data from two sources. Twelve autistic students who were enrolled in an undergraduate program at a midsized university in the United Sates were interviewed to better understand the kinds of supports they value. In addition, program records describing that nature of supports accessed by autistic students in the program were analyzed.

What were the results of the study?

Three primary themes emerged from the study.

• 1.Individualized Services: Students appreciated supports that were tailored to their individual needs. These include individualized guidance, personalize planning meetings, and advocacy support to navigate needs and concerns.
• 2.A Place to Call Home: Students had access to an office that was occupied by the program. This provided students with a comfortable workspace, opportunities for social engagement, and the comfort of being surrounded by others who understand autistic culture.
• 3.Supports Outside of the Program: In addition to supports specific to the program for autistic students, students valued other supports at the university. These include accommodations from disability supports and tutoring through TRIO, a federally funded program to support students from disadvantaged backgrounds.

What are potential weaknesses in the study?

When considering the findings, it is important to remember that the results represent the perspectives of students at one single university. Other groups of students in different environments may value other kinds of supports, including some not known to the students in this study.

How will these findings help autistic adults now or in the future?

Autistic adults should be aware that some colleges and universities offer supports specifically designed to aid in degree completion for autistic students. When considering enrollment in a specific college or university, students should ask about the availability of these supports. Although every institution of higher education will offer disability services, these may not be the kinds of supports that autistic students need to be successful. For autistic students considering college an option, these findings may be useful in identifying the types of supports they want to explore (whether through a program or on their own). The findings can also be helpful to college and universities looking to develop programs for autistic students.

Introduction

The benefits of receiving education at an institution of higher education (IHE) are well documented. Studies have demonstrated positive long-term effects related to wages, health, community participation, cognitive development, independence, critical thinking, and self-efficacy as a result of attending postsecondary education.^1–3 However, autistic people enrolled in postsecondary education complete degrees at substantially lower rates than the general population (35% compared with 51%).² Many IHEs have developed specialized programs to assist students on the autism spectrum.⁴ Autism-specific programs differ in structure, but typically provide supports specific to autistic students to supplement accommodations offered by disability support offices. Despite the popularity of such programs, there is a dearth of research evaluating autistic student needs and experiences at the postsecondary level, as well as sparse literature guiding higher education professionals as they provide services to this population.⁴ The complexity and heterogeneity of the autistic population make it difficult to create a “one-size-fits-all” approach to establish the accommodations and supports necessary for success in IHE.

Benefits of postsecondary education for autistic students

When autistic youth in the United States are not able to continue their education in a postsecondary setting, they are not afforded the same educational opportunities and pathways as many of their neurotypical peers.⁵ It is not only autistic students who benefit from attending an IHE, learning in a diversity-rich environment provides opportunities for all students in postsecondary education to challenge their personal beliefs and perspectives while preparing them to be successful in an increasingly diverse society and workplace as well.⁶

Supports for autistic students in postsecondary education

All IHEs that enroll students receiving federal financial aid must offer disability services to qualified students. Some IHEs offer additional services specifically designed to support autistic students.⁴ Autistic students commonly benefit from academic accommodations such as the following: extended testing time, additional time to prepare for examinations, modified distribution of assessments to allow time between examinations, completing examinations in a separate location, allowing for alternatives for group work, priority registration, and receiving copies of instructor notes.^4,7–9 Autistic postsecondary students are often offered testing in a separate location (e.g., disability center) as an accommodation,^4,9 they may find this solution to be ineffective. Students may have concerns related to scheduling and time issues to make up unplanned examinations as well as their inability to ask the professor clarifying questions while in the testing center.⁷

Although autistic students benefit from the provision of academic accommodations by disability support services, social barriers can pose significant obstacles to postsecondary success.¹⁰ Many autistic students report feeling as if their social needs are not being addressed or met.⁸ As a result, some IHEs offer services or programs designed to specifically target these needs, which may include trainings not traditionally provided to students at IHEs, such as life skill or social skill development curriculum.⁴ Although different IHEs have support programs with a variety of structures and offerings, the programs that individualize service delivery with a personalized approach are believed to be more effective.^7,9 A common offering involves the arrangement of supports from a peer mentor or coach, which may be a key component of a plan to assist autistic students. Support from peer mentors has been shown to increase student self-efficacy and future orientation in the domains of education and employment.¹¹

Some IHEs do not view social skill training as a worthwhile endeavor because students choose not to attend workshops, perhaps because they felt like they had already heard the information.⁴ In a study featuring autistic students enrolled in postsecondary education, one participant noted that social skill groups were not a good use of time by explaining they received “better service in the support I got from teachers and my academic coach, with things or problems, and my therapist” (p. 7).⁷ For some, social skill training is most effective when delivered in a one-on-one setting.⁹ Another alternative to structured social skill groups may be the use of organized support groups, which include a social skill component. These support groups focus on skills such as time management, stress management, and group work strategies in addition to social skill development and lead to increased self-esteem, decreased loneliness, and reduced general anxiety.¹²

Indirect supports

Autistic students in postsecondary settings receive some supports that are delivered indirectly. The majority of schools that provide supports for autistic students also provided education to their faculty about autism.⁴ Noting that some individuals may not receive a diagnosis in high school, faculty can be trained to identify characteristics of autism so that students are able to receive supports in a more timely manner.¹³ To help students feel more comfortable identifying themselves as an autistic individual, IHEs can make campus-wide efforts to teach the social model of disability and the neurodiversity paradigm.¹⁴ When peers, faculty, and staff understand that autism is a significant component of an individual's identity (such as race, gender, or sexual orientation), they are more accepting of the individual than when viewing autism as a disability through the traditional medical model.¹⁵

This study sought to answer the following question: What supports do autistic students value and utilize to support success in postsecondary settings? While the existing body of literature describing these supports is becoming increasingly rich,^4,7,13 no study has included a review of student visitation records to an autism spectrum disorder (ASD) support program to supplement data gleaned from qualitative student interviews. Interview data provide depth and detailed information while the program visitation records provide a general overview of the actual services accessed by the entire group of autistic students enrolled in the program.

Methods

Researchers utilized phenomenological methodology to answer the research question. Phenomenology is used to explore the lived experiences of individuals sharing a similar experience.¹⁶ In line with phenomenological methodology, two data sources were utilized to better understand the supports experienced by autistic students enrolled in postsecondary education.¹⁶ This study was approved by the university's institutional review board.

Setting

The autism support and advocacy program featured in this study is housed at the University of Idaho, a land-grant university with ∼11,500 students. While this study was conducted, the program was in its seventh year of supporting autistic students and typically serves ∼30 students each year. Students in the program select the supports they receive and the activities in which they participate. The program offers regular planning meetings with the program coordinator to discuss course work, time management, and organization skills. During these meetings, students can choose to address other needs such as housing, coping skills, social skills, self-care, self-advocacy, and disability accommodations. Students are invited to participate in Life and Social Skills courses as well as monthly group social events.

Participants

Participants were 12 of 30 postsecondary students enrolled in an autism support and advocacy program at the University of Idaho. Sample sizes of 10–15 participants are appropriate for phenomenological studies.¹⁶ A description of the participants is included in Table 1. All participants were given a $20 Walmart gift card to compensate them for their time. By happenstance, the genders of the participant sample were a similar reflection of the national landscape, where autism diagnosis is four times as likely for males.¹⁷ Eight participants stated that they are enrolled full time presently and have been continuously enrolled full time. Four participants reported they initially came to college as part-time students, but are now enrolled full time.

Table 1.

Interviewee Characteristics

Gender	Age	Year in school	Major	Disability service accommodations?
Female	18	Freshman	Animal Science—Pre-Vet	Yes
Male	19	Freshman	Mechanical Engineering and Computer Science	No
Female	20	Freshman	Environmental Science	Yes
Male	19	Sophomore	Landscape Architecture	Yes
Male	20	Sophomore	Computer Engineering and Geography	Yes
Male	22	Junior	Accounting	Yes
Female	26	Junior	Fine Arts—Graphic Design	Yes
Male	22	Senior	Chemistry and Anthropology	No
Male	23	Senior	Mathematics	No
Male	24	Senior	General Studies	Yes
Male	29	Senior	Geography	No
Male	30	Senior	Economics	Yes

Procedures: student interviews

An interview protocol was developed using existing literature regarding the postsecondary experiences of autistic individuals and the research question of interest. The two interview questions most directly associated with this study were: What supports from the program have been most helpful and what supports outside the program were also helpful? Participants scheduled a specific time to meet with the researcher in a private room on campus, which was familiar to the students. The interviewer had no prior relationship or interactions with any of the interviewees, but was provided with a formal introduction by the program coordinator at the start of each interview. The semistructured interviews were audio recorded and professionally transcribed for analysis.

Procedures: visitation records

Program staff recorded the nature of program participant visits, or contacts, for the 2017–2018 academic year. Each visit was categorized based on the primary activity in which the students engaged during their time with program staff or when using program facilities and recorded after the students had left. If a student remained after a primary objective was complete, an additional visitation record was recorded. The categories used by program staff included the following: (1) scheduled weekly meetings to address academic and other student concerns; (2) academic supports, which include students working independently in the program workspace and sessions involving support from staff; (3) social supports, usually unscheduled drop-in visits (e.g., individual social skill training, interaction with staff or students); (4) group social coaching (i.e., social skill class); (5) organized social events, which were prescheduled and planned by program staff; and (6) advocacy/intervention, during which the program coordinator acted on behalf of or intervened on behalf of the student to address a concern.

Data analysis: student interviews

Transcribed interviews were analyzed using thematic analysis.¹⁸ This process featured deductive thematic analysis (i.e., data were coded with a specific research question in mind) and data were analyzed at the semantic level (i.e., researchers were not looking for meaning beyond the spoken word). After becoming familiar with the data (i.e., the transcribed interviews), two researchers with expertise in qualitative data analysis each coded separately. The use of two independent coders was implemented to increase credibility of the findings through investigator triangulation.¹⁹ The two coders then convened and came to a consensus on a unified coding system and structure. With both researchers working together, codes were grouped into themes and then independently reviewed for appropriateness. Themes and their related codes were again reviewed together by the researchers and then named. Peer debriefing, which involved reviewing the coding and results with the program coordinator, was conducted to increase the credibility of the results.¹⁹ The report describing the themes was written and then reviewed again by both researchers to ensure the data were appropriately represented.

Data analysis: visitation records

Visitation records were analyzed to identify the number of student contacts for each category. Percentages for each category were calculated using the number of total contacts.

Results

Student interviews

The coding of transcribed student interviews resulted in the emergence of three primary themes, including (1) Individualized Services, (2) A Place to Call Home, and (3) Supports Outside of the Program. These three themes and related subthemes are depicted in Figure 1 and described below.

FIG. 1.

A representation of the themes and subthemes that emerged from participant interviews.

Theme: Individualized Services

Interviewees detailed the significant value of the individualized supports they received through the program. Utilizing thematic analysis, researchers identified three subthemes associated with Individual Services, including (1) guidance, (2) meetings, and (3) advocacy.

Subtheme: guidance

The individualized guidance participants received from program staff was a topic prominent in the interviews. Of the 12 participant interviews, nine included at least one data extract that was coded under this subtheme. One interviewee said, “The guidance has helped me along, showing that I'm not alone, and they've shown me different opportunities that we can work through.” Interviewees discussed that the program staff's awareness of resources on campus was an important form of guidance.

In addition to general guidance, over half of the interviewees described guidance through individualized planning supports received through program staff. These included both short-term planning (e.g., finding time to study, getting to class on-time) and long-term planning (i.e., looking ahead at assignments through the term). One student explained planning supports were, “good for like uncluttering my mind and actually setting like an actual path for achieving my goals for the next week.” Another recognized that such supports can foster personal growth, noting, “they helped me kind of figure out how to do it on my own.”

Subtheme: meetings

Interviewees explained that much of the guidance that they received came through individualized weekly meetings with the program coordinator. Eight of the 12 interviewees specifically mentioned their weekly meetings with the program coordinator as a key component of their supports from the program. One student explained that these individualized meetings are “good for getting my bearings for the week,” and another interviewee stated that the weekly session “helped me keep on-track and focused.” One student noted that although the program coordinator has no direct influence on student grades, “you get the little bit of accountability, where it's like you kind of have to report to someone.” When asked about supports they wish they had received in high school, one interviewee said “the weekly meetings…I would have loved that in high school.”

Subtheme: advocacy

The idea of advocacy-related supports for interviewees emerged as a subtheme relating to individualized services. Each of the three students who described the importance of advocacy mentioned it more than once in their interview. As autistic students face barriers related to communication, having the support of program staff to advocate on their behalf, when needed, can be an essential support. One interviewee detailed advocacy-related supports that were both instructional and practical, explaining that program staff helped with, “recognizing when to ask for help, if things aren't going well, being able to reach out to my professors and kind of work through issues.” Another interviewee described the general advocacy tasks performed by program staff, including educating professors and the student body about autism, “I'm not just some stereotype…you have like everyone always thinks that people with Asperger's and autism and ASD are low-functioning and things like that, but we're not.”

Theme: A Place to Call Home

This particular program to support autistic students includes access to a physical space during the day. Seven of the 12 participants discussed program benefits related to the physical space provided. Three related subthemes to the main theme A Place to Call Home were identified through the process of thematic analysis, including (1) workspace, (2) a culture of understanding, and (3) social engagement. Some students mentioned several benefits within multiple subthemes.

Subtheme: workspace

Statements from students describing the value of a designated workspace were prominent in the interviews. Of the seven students who noted the physical space provided by the program, six brought up their usage of the space as a location to get school work completed. Participants appreciated having a quiet space to complete assignments and work with minimal distraction. One interviewee said, “The thing I like the most is that there's a room where I can sit and study to my heart's content.” Another explained, “The space has been really great, having somewhere where it's quiet, there's no social expectations, really, that are overwhelming. I used to camp out in hallways outside of my classes in between them, so it's a lot nicer…”

Subtheme: social engagement

Although students described the benefits of access to a quiet workspace, five students also discussed the value of their social experiences in the program space. Interviewees explained the benefits of having opportunities to play games and spend unstructured time with peers. One student described the significance of playing board games with peers and program staff, explaining, “I'm not a super-social person to begin with…I've had bouts with anxiety and things up here, and it's been nice to kind of have distractions here and there.” Another student described the advantages accessing a social outlet, explaining, “it's great, you know, just to kind of, like I said, escape for like an hour or two a week.”

Subtheme: a culture of understanding

Interviewees went beyond explaining the benefits of the physical workspace and its availability of casual social access, five students described the advantages of having access to a location where people have an awareness and understanding of autism. One student said, “The room and having a group of people that understand and accept me for who I am,” when asked about which program features they most value. Since autistic students typically spend their day on campus with mostly neurotypical peers, they found comfort in having access to a safe zone for autistic students and allies. One interviewee explained that in the program space, “I can relate to you guys, I can talk with you guys, and so that's actually really enjoyable.”

Theme: Supports Outside of the Program

Many of the students interviewed received supports beyond those offered in the autism-specific programs. When discussing the supports that were most helpful, six interviewees identified academic accommodations offered by the campus disability support office. Four accommodations described as most valuable to students, with direct quotes from student participants, included (1) small-group testing to reduce distractions (“it's kind of hard to take tests with lots of people. It's like, there's a lot of noise, lots of distraction, there's a lot of things”); (2) audio recorders and scribes for class notes (“it makes it a lot easier when trying to go back and study for my stuff, because I can listen to them all at once”); (3) late arrivals to class when needing to talk to a professor at the end of the previous class (“because I may not remember to later and it's really nice to be able to ask those questions”); and (4) additional time on tests and assignments (“I had two classes that had just assignments every week and they were due on exactly the same day at the same time… so I had one of them moved forward and one of them moved back”).

In addition, two students also described receiving supports from TRIO, a federally funded program to support students from disadvantaged backgrounds. Specifically, interviewees mentioned the value of tutoring services provided by TRIO staff. One student explained “[TRIO staff] help with individual tutoring, which is, it's very helpful” and another noted “the TRIO free tutors is really awesome.”

Program visitation records

Program staff documented 1349 student contacts during the 2017–2018 academic year, which represented program interactions with 27 students. Table 2 shows the number of visits and percent of total contact for each of the six categories as well as the percent of the total number of visits. Three of the six visitation categories combined constituted for nearly 85% of the student contacts for the school year. These included weekly meetings (30.4%), academic supports (28.8%), and social supports (24.7%).

Table 2.

Description of Student Contact for the 2017–2018 Academic Year

Contact type	Number of visits	% of total
Weekly meetings	410	30.4
Academic supports	388	28.8
Social supports (informal)	333	24.7
Advocacy/intervention	94	7.0
Group social coaching	65	4.8
Organized social event	59	4.4

1349 total contacts; 27 students.

Discussion

This study sought to better understand the supports valued by students enrolled in a postsecondary autism support program. Primary themes to emerge from the data include the following: (1) Individualized Services, (2) A Place to Call Home, and (3) Supports Outside of the Program. While the study findings are generally aligned with information gleaned from the existing literature and reflect upon previously identified support strategies, it also introduces unique concepts, such as the benefit of having a dedicated physical location for autistic students, which is not represented in existing literature.

Results suggest that students value supports, both from the program supporting autistic students and from other entities, primarily disability services and TRIO. When looking at program-specific supports, students valued the individualized nature of the services, especially weekly scheduled check-in meetings as well as advocacy and guidance from program staff. It should be noted, however, that the prescheduled nature of the academic meetings may have contributed to these being the most frequently accessed service of the program. These findings support existing research that emphasizes the importance of services tailored to the individual needs of each student.^7,9

In addition, students appreciated the availability of a physical space on campus, which provided a dedicated autism-friendly environment to complete homework, opportunities for social engagement, and the opportunity to be with people who understood autism. The visitation records also suggested that enrolled students accessed academic supports from program staff at greater rates than were mentioned in the interviews. The use of this type of an environment resulted in positive outcomes for autistic individuals.¹⁹ This finding aligns with the participant descriptions in the present study, students felt that program staff and mentors understood and accepted them. The “Culture of Understanding” seemed to impact the student's frequency of utilizing the program's workspace, activities, and asking for additional help when needed.

Although visitation records show that nearly 25% of student contacts were social in nature, interviewees included little mention of social skill supports offered through the program. It could be that interviewees did not view these types of support as important. Other explanations could include (1) the social skills class offered by the program is a general education course that meets in a different part of campus, and participants may not view it as a program offering; (2) social skill instruction may be delivered such that participants are not aware that they are engaging in development activities, such as those delivered informally in weekly meetings; or (3) the interviewer was an unknown person and the participants may not have been comfortable initiating a topic related to their social challenges. The findings of this study do not provide additional guidance to better understand the value of group social skill courses for autistic students, which have been mixed in earlier studies.^4,7,12

Limitations

Certain limitations must be considered when reviewing study results. Although appropriate for a phenomenological study, the small sample size (n = 12) does not produce data that can be generalized for the entire population. Generalization is further limited since all student participants are in a program at one specific university. As such, the results only reflect the services available to students at this one IHE. Also, components of this study involving social skills did not allow for specificity in this area. For example, including an interview question that specifically addressed social skill instruction may have been helpful in better understanding the value of these kinds of supports. In the visitation records, it would have been useful to have had separate categories to differentiate between the more intentional staff efforts to develop social skills from activities that were more related to relaxation and casual social interactions.

Implications for practice

The results of previous studies and the findings from this research support the notion that a key component of program delivery involves the individualized nature of services. Students appreciated weekly planning meetings, where they had the opportunity to seek individualized supports. Scheduled weekly meetings may be the backbone of the program as they provide a platform for students to identify individual concerns and seek guidance in a comfortable setting. In addition, based on the results of this study, programs should offer a dedicated physical space for students. This provided an opportunity for students to complete homework in an environment conducive to work completion and seek academic supports and resources from program staff. Similar to the findings from previous studies, this study suggests that students may value academic supports over social skill supports from an autism support program. Although students noted the benefits of academic accommodations in this study, they also identified the value of having informal social opportunities and an understanding community, which can be provided and fostered when students have a dedicated program space. Participants discussed the benefits of having academic accommodations through disability services. At the University of Idaho, the program is a branch of the disability services office, which provided oversight and guidance. Recognizing that many individuals enrolled in programs for autistic students may also receive accommodations from disability services, it may be beneficial for newly established programs to align with university disability services.

Future research

To expand on these findings, future research should seek to identify more in-depth information related to the nature of the student visits. The existing literature features studies with small sample sizes, and therefore, a large-scale study involving multiple IHEs with autism support programs is needed to identify predictors that lead to a greater likelihood of student graduation. Such a study could involve exploring other factors, such as race, gender, class, ethnicity, and cultural backgrounds of students. A study focusing on the experiences of recent autistic postsecondary graduates would identify the supports that contributed to successful postsecondary completion.

Conclusion

Programs designed to support autistic students enrolled in postsecondary education should individualize supports and provide a program-specific location. These supports, in conjunction with accommodations through disability services, empower autistic students with the tools and resources necessary to be successful in their postsecondary education endeavors.

Authors' Contributions

A.R.S.: research design, review and summary of related literature, data analysis, writing of results, writing of discussion, article preparation, and research team organization. M.M.L.: research design, review and summary of related literature, data analysis, writing of discussion, and article preparation. In addition, she served as the interviewer of the participants. L.G.: research design, recruitment of participants, interview logistics, review and summary of related literature, and article preparation. Each of the three authors has reviewed and approved this article before submission. This article has been submitted solely to this journal and is not published, in press, or submitted elsewhere.

Author Disclosure Statement

The A.R.S. and M.M.L. have no conflicts of interest to disclose. L.G. is the director of the program from which participants were enrolled. To address this as a potential conflict of interest, this author was not involved with data analysis. As such, the results were found without direct involvement from this author. However, L.G. was asked to review the findings before article submission as a credibility check. Nothing was altered as a result of this credibility check.