Autism And Accommodations In Higher Education: Insights From The Autism Community

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Journal of Autism and Developmental Disorders (2018) 48:679–693 https://doi.org/10.1007/s10803-017-3353-4

S.I. : COLLEGE EXPERIENCES FOR STUDENTS WITH ASD

Autism and Accommodations in Higher Education: Insights from the Autism Community

Jennifer C. Sarrett1

Published online: 14 December 2017 © Springer Science+Business Media, LLC 2017

Abstract This article builds on the growing body of research on higher education for autistic students by soliciting input from autistic adults on their higher education experiences and suggestions on making these experiences more ‘autism-friendly’. Sixty-six individuals participated in a national exploratory survey and thirty-one participated in follow-up, online focus groups. The article reviews the accommodations individuals received and the accommodations they would have liked to receive. Concrete strategies are provided for institutes of higher education to address the social and sensory needs of autistic students, areas many participants reported being neglected in their academic experience, such as mentors and a neurodiverse space. These suggestions are intended to complement traditional academic accommodations to improve the outcomes of autistic students.

Keywords Autism · Higher education · Neurodiversity · Accommodations

Introduction

The National Center for Education Statistics reported that in the 2008–2009 academic year 88% of institutes of higher education enrolled students with disabilities. Of these insti- tutions, 56% reported enrollment of students identifying as having an Autism Spectrum Disorder (referred to as ‘autism’ for the remainder of the paper; Raue et al. 2011). Given the well-known rise in prevalence of diagnosed autism since the mid-1990s, it is likely that the rates of autistic students1 enrolling in post-secondary institutions will increase in the coming years (Cox et al. 2017; Gobbo and Shmulsky 2014; Hendrickson et al. 2013; Peña and Kocux 2013; Sayman 2015; Shattuck et al. 2012; Zeedyk et al. 2016). Based on current US prevalence of autism, which is 1 in 68, an esti- mated 49,000 autistic students graduated high school in 2015, many of whom are likely to be interested in attending an institute of higher education (Wei et al. 2016). While this is a promising trend, recent research has shown that autis- tic students have lower graduation rates and lower rates of post-graduation employment as compared to non-disabled students as well as students with other disabilities, with the

exception of students with intellectual disabilities (Gelbar et al. 2014; Gobbo and Shmulsky 2014; Kapp et al. 2011; Sayman 2015; Shattuck et al. 2012; White et al. 2016). There is a clear need to identify, develop, and implement new strat- egies to increase the success of this student population.

Important legislation such as the Americans with Dis- abilities Act of 1990 (ADA), the Higher Education Opportu- nity Act of 2008, Section 504 of the Rehabilitation Act, and Individuals with Disabilities Education Act (IDEA) attempt to address the educational needs of students with disabilities and have set important precedents (Hendrickson et al. 2013; Timmerman and Mulvihill 2015). However, it is difficult to address the needs of all students with packages of accom- modations. Typical academic accommodations for students with a range of disabilities, including autism, in higher edu- cation are similar to those received in high school, such as extended test time, distraction free testing, flexible due dates for assignments, breaks during class, the use of technology in the class, note takers, clear directions, the use of visuals,

* Jennifer C. Sarrett jsarret@emory.edu

1 Center for the Study of Human Health, Emory University, Atlanta, GA, USA

1 Note on language: I use the term ‘autistic student’ rather than the phrase ‘student with autism’ to reflect the preference of autistic self- advocates and the neurodiversity movement, which rejects use of per- son first language because, for this community, autism is seen as cen- tral to identity formation and the latter phrasing seems to suggest the need to remind people that autistic people are, in fact, people (Kapp 2013; Silberman 2015). Further, I have written this article in a way that is understandable and accessible to a wide variety of stakehold- ers interested in this conversation and, thus, have attempted to avoid overly complex language and jargon where possible.

 

 

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and optional group activities (Sayman 2015; Van Hees et al. 2015; Zeedyk et al. 2016). These accommodations often reflect needs identified by practitioners without significant input from college students with disabilities, frequently lead- ing to accommodations that are misaligned with the needs of the students who use them, including autistic students. Often autistic students do not feel comfortable explaining their needs or may not know how to advocate for themselves and so their input on needed and desired accommodations is not offered and must, instead, be solicited to ensure they are appropriate and useful (Cox et al. 2017; Fabri et al. 2016; Madriaga and Goodley 2010). This article addresses the need for input from the autism community by gathering the perspectives of autistic individuals on accommodations received and desired in institutes of higher education as well as thoughts on making higher education more accessible and autism-friendly. The results of a mixed method, qualitative study that employed both an online survey and follow-up, online focus groups are presented and used to develop a set of recommendations for institutes of higher education based on the experiences of autistic adults.

Background on Inclusive Higher Education for Autistic Students

One approach that has been proposed by educational experts to better address the needs expressed by students with dis- abilities, including and beyond autistic students, and to improve access to the educational environment is Universal Design for Learning, or UDL (Couzens et al. 2015; Sayman 2015; Zeedyk et al. 2016). UDL is the concept and practice of designing educational environments such that they are accessible to the most students possible, disabled and non- disabled. Based on the architectural concept of Universal Design, UDL employs the same core principles as those considered in the creation of universally accessible physi- cal spaces, such as equitable and flexible use, simple and intuitive designs, and minimal effort needed to access the space. Applied to educational spaces and practices, these principles lead to inclusive educational environments that are dedicated to multi-modal instruction, engagement, and assessment that is attentive to various learning preferences and needs (Grogan 2015; Shaw 2011). With UDL, the needs of a variety of learners are addressed, however these models are not meant to be restrictive; flexibility is central to ensur- ing student needs are met (Fleischer 2012). Taking a flex- ible, UDL approach to improving access to higher education ensures a model is not based primarily on changing, or ‘fix- ing’, student behavior but creating educational environments that are respondent and accessible to a variety of learning needs and cognitive styles (Fabri et al. 2016).

Despite growing interest in the outcomes and experi- ences of autistic adults, there is still little research on the

experiences of autistic students in higher education. In particular, research that gathers perspectives from autistic students on a large scale is scant (Gelbar et al. 2015; Pin- der-Amaker 2014). A 2015 study led by Nicholas Gelbar noted the “fragmented and understudied” (p. 46) state of research in this area and, thus, completed a national survey to gather information from autistic adults who had experi- ences in higher education. This study included thirty-five participants from across the United States and focused on academic, social, and housing experiences. Overall, students reported high levels of academic success but difficulties with social experiences and executive functioning tasks, such as time management and study skills. Additionally, students received similar accommodations to those received in high school (Gelbar et al. 2015).

Other studies support these findings, showing that autistic students have a range of needs that extend beyond typical academic concerns, yet are critical to academic success. As Gelbar et al. (2015) noted, autistic students have important social concerns and needs. A literature review in the area showed that 50% of autistic students have difficulties obtain- ing and maintaining friendships and with participating in typical social events, which are often loud and busy (Fabri et al. 2016). Difficulties with social interaction have been widely reported in a host of other studies as well (Couzens et al. 2015; Fleischer 2012; Gobbo and Shmulsky 2014; Say- man 2015; Taylor 2005; Van Hees et al. 2015; Wei et al. 2014; White et al. 2016; Zeedyk et al. 2016), yet few accom- modations address these needs. However, there seems to be an increasing trend towards the development of disability, and even autism, focused higher education programs that include a social skills or mentoring component (Couzens et al. 2015; Pugliese and White 2014; Schindler et al. 2015; Zager and Alpern 2010).

Relatedly, research has also shown concerns regarding these students’ sense of identity and the challenges they encounter when developing a positive autistic identity in the presence of significant disability related stigma. Identity- related struggles are an important consideration as the devel- opment of a positive disability identity is associated with being comfortable disclosing one’s autistic status, which is necessary to gain accommodations in higher education (Cai and Richdale 2016; Couzens et al. 2015; Cox et al. 2017; Fabri et al. 2016; Gelbar et al. 2015; Grogan 2015; Sayman 2015). Creating an accepting campus community that boasts a UDL approach to learning is one way institutes of higher education can both ensure they are aware of student needs and address them in a way that reduces the stress of disclos- ing one’s disability status.

Other important needs identified in the literature include a consideration of how to improve parental involvement (Fleischer 2012; Peña and Kocux 2013), independent living skills (Schindler et al. 2015; Van Hees et al. 2015; Wei et al.

 

 

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2014; White et al. 2016; Zeedyk et al. 2016), and mental health concerns, such as anxiety and depression. Further, difficulties with executive functioning and coping with stress are frequently identified needs of autistic students (Cai and Richdale 2016; Coduti et al. 2016; Fabri et al. 2016; Fleischer 2012; Gelbar et al. 2015; Gobbo and Shmulsky 2014; Van Hees et al. 2015). While some of these needs are addressed with typical disability accommodations, many are left unconsidered and unaddressed.

One area in need of improvement is campus awareness of autism. Many studies report a need for better faculty and staff training on autism and the needs of autistic students in higher education. Researchers both in the United States and Australia have noted a general misunderstanding, or even contradictory understandings, of autism by university staff. In general, more campus training on autism that focuses on countering inaccurate and often discriminatory assump- tions about autism is greatly needed (Couzens et al. 2015; Cox et al. 2017; Fabri et al. 2016; Fleischer 2012; Sayman 2015). For example, one study found that, compared to autis- tic students, faculty and staff significantly underestimated the significance of sensory and daily living needs of autistic students (Knott and Taylor 2014). Unfortunately, faculty and staff buy-in may be the largest challenge to generating better autism awareness and understanding (Grogan 2015) despite the fact that such faculty/staff inactions could possibly con- stitute violations of the Americans with Disabilities Act (ADA; Grasgreen 2013; Harkin 1990). Further, the Gelbar et al. (2015) study reported students described experienc- ing stigmatizing classroom discussions on autism that did not recognize that some students in the room may identify as autistic.

Most of the literature identifying the needs of autistic stu- dents include recommendations for autism specific accom- modations. Studies that identified social-emotional needs suggested the use of mentors, disability support groups, pri- vate living spaces, and access to counseling (Cai and Rich- dale 2016; Couzens et al. 2015; Gelbar et al. 2015; Grogan 2015; Zeedyk et al. 2016). Although less attention has been given to the sensory needs of autistic students despite it being a high priority area of concern for many autistic stu- dents, some research noted the need for noise reduction or more visual supports (Fabri et al. 2016; Gelbar et al. 2015; Zeedyk et al. 2016). Overall, however, this area of accom- modations was left unexplored.

Some of the literature includes suggestions in line with a UDL approach to better address the needs to autistic stu- dents, such as more online options for learning and assess- ment (Satterfield et al. 2015) and first year introductory experiences to help orient autistic students and facilitate smoother transitions into new educational and living envi- ronments (Couzens et al. 2015). Further, in class, instruc- tional suggestions include using a wider variety of formats

to convey information (i.e., auditory, tactile, visual), and flexible assignment formats (Zeedyk et al. 2016), the use of unambiguous questions, stating behavioral expectations, and previewing the class routine (Gobbo and Shmulsky 2014). Again, many of these modifications are useful to a range of students, including students who are not disabled.

It is important to note that many institutes of higher edu- cation have developed support programs for their autistic students.2 This is a promising trend. Such programs gen- erally offer services related to providing assistance in the areas of academic work, social skills, daily living skills, and emotional and psychological well-being. Programs employ a range of strategies, such as group sessions to practice conversation skills or to work on homework, one-on-one or group academic and organizational (i.e., time management, daily planning) coaching, residential assistance, organized social activities, or content tutoring. Unfortunately, some of these programs require an additional fee to enroll (White et al. 2016) and many have limited spots available. Thus, access can be an issue even in institutions with specialized programs. However, while research evaluating these pro- grams is limited, there have been promising findings for spe- cific programs, such as one that educates autistic students with intellectual disabilities alongside their peers at college (Zager and Alpern 2010), a brain-computer interface pro- gram that monitored cognitive states, psychosocial programs (White et al. 2016), and a program centered on the use of a problem-solving manual to help with social interaction, organization, and time management (Pugliese and White 2014). There is also evidence that peer mentoring programs have benefits for both the mentor and mentee, particularly in goal setting and attainment (Segall et al. 2016). The simple presence of these programs reflects a growing recognition of the increased numbers of autistic students in higher edu- cation and the need to provide additional or supplementary supports.

Similar to the Gelbar et al. (2015) study mentioned above, the research presented here is based on data collected from a national exploratory study on post-secondary experiences of autistic adults. While this study inquired about academic, social, and housing experiences, it also asked for sugges- tions from the participants on how to make higher educa- tion experiences more ‘autism-friendly’. By using a mixed method, qualitative study designed with the access needs of autistic individuals in mind, this study worked to con- firm the findings from previous research on accommoda- tions needs and experiences (Couzens et al. 2015; Cox et al. 2017; Fabri et al. 2016; Fleischer 2012; Gelbar et al. 2015;

2 For a fairly comprehensive list of these programs please visit the CollegeAutismSpectrum.com site at: http://www.collegeautismspec- trum.com/collegeprograms.html

 

 

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Sayman 2015) and extend this work to included opinions and recommendations from the autistic participants on strategies institutions can follow that more closely fit the needs of the community. Thus, the results of this study are used to refine previous recommendations for creating better educational experiences for autistic students based on a UDL approach as well as suggestions from individuals who identify as autistic and had experiences in institutes of higher educa- tion. Guiding questions for the current study were: (1) What education, housing, and social accommodations did autistic individuals who have attended or currently are attending an institute of higher education receive? What was and was not effective? (2) What accommodations would this population have liked to receive, but did not? (3) What suggestions did participants have for improving the autistic experience in higher education?

Method

Procedures

The data presented here is a part of a larger study aimed at collecting information about post-secondary (i.e., higher education and employment3) experiences of autistic adults, with a focus on gathering information on how to makes these experiences more autism-friendly, or neurodiverse.4 The larger study was reviewed and approved by the Emory Institutional Review Board (IRB #00087911) on April 8, 2016 and consisted of two components: an online survey and online, follow-up focus groups. Both components included features designed to be as autism-friendly and accessible to

the community as possible, such as the opportunity to leave and return to the survey over the course of several months; the use of jargon-free, accessible language; options for text- based or audio focus groups; and online focus groups that were available for 4 days to allow participants ample time to put thoughts into text. The survey was developed based on issues in post-secondary experiences identified in pre- vious research. Two autistic self-advocates, one academic not involved in autism research, and one non-autistic, non- academic individual took the survey and provided feedback on the flow, wording, understandability, and accessibility of the questions; the design of the survey (i.e., color, font size, etc.); and the length of the survey. This input was gathered to ensure that the survey was accessible to individuals not involved in neurodiversity or autism research, used autism- friendly language, covered topics important to the autistic community, and was of a reasonable length. The resultant survey had a total of eighty-seven items, including the con- sent, instructions throughout, and demographic questions. Twenty-four questions focused on educational experiences, seventeen of which focused on higher education. Of these, seven were open-ended questions (see Table 1 for examples).

The focus group was designed based on initial survey responses and included nine questions on higher educa- tion experiences (see Table 1 for examples). Because focus group questions were intended to supplement survey data, the results of each will be reported thematically, rather than in separate sections, with some overlap to demonstrate how the data from each compliments each other. Participants who agreed to be contacted about the focus groups were given the option of either an online, text only option or an audio only phone option. All but one participant opted for the online version; all focus groups were conducted in the online for- mat. In order to increase accessibility, the focus group was designed in a bulletin board format. On a secure site, partici- pants were invited to a group where the focus group ques- tions were posted. Participants were instructed on how to maintain anonymity while participating in the discussions. The site was available to participants for 4 days, over which time they and the researcher could answer the questions,

Table 1 Examples of open-ended survey and focus group questions on higher education

Survey questions  Briefly describe the accommodations you received  What other accommodations would you have like to received? (if none, put none)  Overall, what would an ideal post-secondary educational experience look like for you? What services, supports, designs, instructional tech-

niques, etc. would have made your higher education experience perfect?  What recommendations do you have for creating autism-friendly, neurodiverse educational experiences?

Focus group questions  What would be good indications of a higher education school or program being autism friendly? What would you look for or like to see?  Some of you mentioned social groups and supports for campus interactions, particularly with neurotypical students. What would this look like?  What would a safe space on campus have and look like?

3 An article with the results of the employment section of the data is in Disability Studies Quarterly. 4 Neurodiversity is the notion that autism is a natural variant of human neurological manifestation that should be neither cured nor fixed. This approach is critical to the perspectives of autistic self- advocates and aligns with the larger disability rights movement (Kapp 2013; Silberman 2015).

 

 

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respond to comments, and propose new topics of discussion. Similar to the ability to save and return to the survey, this feature was included to ensure that participants who had difficulty with verbal language had ample time to express their thoughts. Although the study did not gather data on which participants had difficulty with speech production, research shows this to be a common difficulty in the autism community (Cleland et al. 2010; Lin et al. 2015) and so was an important access concern to consider. Six focus groups were completed between May 30, 2016 and July 12, 2016.

Recruitment

The survey was open from April 14, 2016 until July 1, 2016 and distributed to various online forums (e.g., Wrong Planet, AspiesCentral), support groups from around the U.S. (e.g., Autism Society of San Diego, Aspergers Adult Support), and organizations working with adults with intellectual and developmental disabilities (e.g., The Arc, Autistic Self Advocacy Network), who emailed the survey link out to their listservs and/or posted a link to the survey on social media sites, primarily Facebook. Listservs, social media sites, and online forums were provided a brief description of the study, inclusion criteria, an estimated 30 min completion time, and the researcher’s email address (so potential partici- pants could use to ask questions or voice concerns), and a link to the survey. No compensation was offered. To increase access, participants were ensured unlimited opportunities to save and return to the survey while the survey was open.

Data Analysis

Data from both the survey and focus groups were analyzed using a Grounded Theory approach such that codes groups and codes were developed after a deep review of survey and focus group responses (Bernard and Ryan 2010). First, conceptual groups were determined and defined that were apparent in the data and addressed guiding research ques- tions (e.g., Accommodations, Institute Characteristics, Chal- lenges Encountered) then specific codes were assigned and defined (e.g., under Accommodations: Sensory-received; under Institute Characteristics: Location; under Challenges Encountered: Academic). Separate codebooks were devel- oped by the PI for the education and employment sections of the survey and the focus groups, resulting in a total of four codebooks.

Interrater reliability was completed using the consensus coding method (Miles and Huberman 1994) wherein two coders code the same material and review and discuss the results with the aim of coming to a consensus on all final codes applied to the data. This method was chosen because the PI was the coder of the dataset and so ensured a well- defined codebook. Thus, the answers from one randomly

chosen open ended question from the survey and one ran- domly chosen question from the focus group (from both the education and employment sections) were chosen and coded by the PI and trained coder. This first round of coding resulted in 26% code agreement. The PI and trained coder discussed the results in detail and came to 100% agreement on all codes (i.e., 100% agreement via consensus coding) and made improvements to the code book to clarify codes and add codes needed for the data but not reflected in the codebook. This process was repeated with the updated code- book and different questions randomly selected from the sur- vey and focus group data and the PI and trained coder again reached 100% consensus coding after fewer points of disa- greement (58% as compared to 74%) with only minor adjust- ments to the codebook. Given the improvement in initial code agreement and ease at which consensus was reached, the codebook was left unchanged and, thus, finalized. Based on word count of text coded, 12% of focus group and open- ended survey data were used for reliability, meeting the recommended 10% of data included in interrater reliability checks (Campbell et al. 2013; Mao and Richter 2014). Fol- lowing reliability, the PI coded the remainder of the data and employed the identified codes to organize and analyze the data. In this way, text from the survey and focus group was pulled and assessed based on frequency of comments under specific codes and within code categories and percentage of participants making these comments.

Results

Participants

The study included individuals who identified as being autis- tic, were 18 years or older, and lived in the United States. A total of ninety-four individuals accessed the survey, seven of whom indicated they were ineligible to continue beyond the consenting page. Of the remaining eighty-seven, sixty- six indicated they attended an institute of higher education, comprising 76% of those who completed the survey. The remaining twenty-one participants reported only employ- ment experiences; this data are analyzed elsewhere (Sarrett 2017). Ten of these participants answered less than half of the questions regarding higher education experiences, how- ever were included in the analysis. Thirty-one participants took part in the online focus groups (43% of those who com- pleted the survey), which ranged in number from three to seven individuals per focus group.

Nearly half (47%) of participants were between the ages of 18 and 25. The next largest age group was 26–35 years of age (29%), with decreasing numbers in subsequent age groups (see Table 2 for more demographic details). Over half of the participants (51%) identified as cis-female, 15%

 

 

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identified as cis-male, and 8% identified as transgender and 8% as gender fluid. Geographic distribution was fairly mixed, with higher rates of participants from the Northeast (32%) and Southeast (24%) regions of the United States.

One participant did not report a primary diagnosis, but of the remaining respondents, nearly half (49%) reported being diagnosed with autism or Autism Spectrum Disor- der. Twenty-six percent were diagnosed with Asperger’s

Table 2 Participant demographic characteristics

a 1 participant did not report this item b 15 participants did not report this item

Age Number of participants (%)

18–25 31 (47%) 26–35 19 (29%) 36–45 8 (12%) 46–55 5 (8%) 56–65 3 (5%)

Gender Number of participants (%)

Cis-female 34 (51%) Cis-male 10 (15%) Transgender male 4 (6%) Transgender female 1 (2%) Other 12 (18%) Gender fluid 5 (8%)

Geographic region Number of participants (%)

Northeast 21 (32%) Southeast 16 (24%) Southwest 14 (21%) Midwest 7 (11%) Northwest 6 (9%) Prefer not to answer 2 (3%)

Primary diagnosisa Number of participants (%)

Autism spectrum disorder 32 (49%) Asperger syndrome 17 (26%) Self-diagnosis 9 (14%) PDD-NOS 3 (5%) Other 4 (6%)

Diagnostic ageb Number of participants (%)

22+ 19 (29%) 11–18 11 (17%) 4–10 10 (15%) 19–21 7 (11%) ≥ 3 4 (6%)

 

 

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Syndrome and 5% as Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS). Fourteen percent were self-diagnosed, a category that is contested within the autism community but which was included here because of its relevance to the autistic self-advocacy community (Sar- rett 2016). Information on level if impairment or function- ing was not collected. Of the 51 participants who reported diagnostic age, nineteen (29% of total participants) were diagnosed at age twenty-two or older, meaning several were diagnosed after or during their time at an institute of higher education or attended an institute of higher education at a later age. This reflects the results of a recent literature review, which noted that 47% of the participants across the studies included did not have a diagnosis when they began college (Fabri et al. 2016). The data from this group are included because their experiences interacting with higher education structures and practices remain valuable in deter- mining the needs of this community. Participants reported a total of thirty-three comorbid conditions, the most frequent of which were anxiety (36%), depression (30%), and ADD/ ADHD (24%).

Two participants did not report the type of institute of higher education attended and of the remaining sixty-four, twenty-three (36%) attended more than one category of insti- tute. Fifty-three (83%) reported attending a college or uni- versity, twenty (31%) attended community college, and one reported attending a vocational or technical school. Fourteen (22%) participants attended graduate school (seven (11%) for each doctoral and master’s programs) and two (3%) attended medical school.

Five participants did not indicate their area of study. As some participants attended more than one institute of higher education, including graduate education, some participants reported more than one area of study. The two most com- monly reported programs of study were liberal arts and the humanities, at twenty-one (32% of the full 66) participants, and the social sciences, at twenty (30%) participants. Fifteen (23%) participants studied science, medicine, or math, nine (14%) studied computer technology, seven (11%) studied education, seven (11%) were in another category or unde- clared, and two (3%) studied business or accounting. This somewhat defies the often held belief of autistic individuals being most interested in studying and following career paths in science and/or technology.

Accommodations Received

Forty-three (65%) participants reported registering with disability services at the institute of higher education they attended. Forty-one (62%) reported receiving accommoda- tions. This is somewhat lower than the findings of a study in Europe which reported that 70% of students with disabili- ties received some sort of institutional support (Fabri et al.

2016). Of the nineteen individuals who did not obtain an autism diagnosis until after 22, ten reported registering with disability services and/or getting accommodations in higher education. These individuals may have received accommo- dations for another diagnosis or attended college after their diagnosis. The most commonly reported accommodations are similar to those reported in previous research and are typical of academic disability accommodations. The top five accommodations received were extended test time, note tak- ers, distraction free test areas (i.e., in a quiet room, test- ing alone), flexible or extended due dates for assignments, and the use of technology in the classroom (i.e., laptops, smart pens). Other accommodations that were infrequently reported but are in line with a UDL approach to higher edu- cation are recording lectures, taking breaks during class, and obtaining clear directions.

Twenty-eight (68%) participants who received accommo- dations reported that the accommodations met their expec- tations. Many described positive experiences with both the disability services coordinators and the results of the accom- modations. One participant noted: “I honestly didn’t realize so many accommodations were available until I met with my coordinator. He had a lot of great ideas.” Another participant noted that, “with these accommodations, I graduated in the top 4% of my class.” However, even among the participants who reported that the accommodations met expectations, several reported some difficulties with either the process or with professor adherence. “They met my expectations,” one participant reported, “but it was absolute hell trying to get them to understand that the accommodations are necessary.” Another participant reported, “accommodations are good if the professor complies. Sometimes the professor does not comply and there is nothing that can be done.”

Thirteen (31%) participants who received accommoda- tions felt their accommodations did not meet their expecta- tions. Many of these participants felt the accommodations they received did not address their sensory, social, academic, or psychiatric needs. “My mental health was never taken into account in terms of my grades,” one participant reported. Some found that many of the accommodations they were granted were simply not useful, with one participant remark- ing that

some of these [accommodations] were more useful than others […] recording lectures was less useful, for example, than having a notetaker […] because I have too much [sic] auditory processing issues to suc- cessfully navigate a crappy recording from a handheld digital device, which picked up all the same noises that were causing me trouble in the classroom.

This participant’s accommodations did not consider sensory as well as academic needs, rendering some of the accommodations impractical. Similarly, another participant

 

 

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reported the books on tape provided were not helpful because this person can “read just fine” and would have liked to receive written instructions in lecture courses, but this accommodation was unavailable or was not offered.

Other participants reported dissatisfaction because of inconsistent implementation, with one person noting, “If the accommodations listed had consistently been provided without excessive difficulty from professors and the need to advocate for myself constantly, then yes [the accommoda- tions would have been useful]. But realistically, no.” Among the forty-eight participants who rated the frequency at which faculty honored their accommodations in the survey, three reported “Never” and five reported “Rarely”.

Focus group participants reflected this dissatisfaction. Better awareness and provision of accommodations by faculty and staff was the second most commented need in the area of accommodations, with ten participants remark- ing on this topic. One focus group member commented on the perception of accommodations, stating, “It needs to be understood accommodations are not meant to give an unfair advantage to students, but to level out things where the typical system doesn’t fit.” Another focus group participant recalled, “I know too many professors who view this as not their job or who are simply unprepared for anything more complicated than extra time on tests.” Regardless of why professors neglect to fulfill accommodation requests, at least some students hypothesized that faculty members misunder- stood the purpose of accommodations or were untrained in providing them.

Accommodations Desired

This section focuses on accommodations study participants would have liked to have received while attending an insti- tute of higher education. The most frequently cited need from both the survey and focus groups was increased autism awareness on campus. These suggestions included com- ments about the need to provide better training on autism to staff, professors, and peers as well as impacting campus atti- tudes about autism with the input of autistic people. “Actu- ally listen to autistic people,” one participant noted, “we all have different needs, different strengths and weaknesses.” One survey participant had specific suggestions for various staff members, noting that “medical and security staff should know not to expect an autistic patient’s responses to be the same as neurotypical’s in emergency situations” whereas security staff need to know that “I truly may not know why an action I’ve taken is unacceptable—if there isn’t a written rule against it my logic may not see it as unacceptable.”

This area is also closely related to stigma and discrimina- tory practices. Similar to findings from in the Gelbar et al. (2015) study, participants in the current study reported encountering negative attitudes on campus. “Don’t speak

about disabled people with disdain or hostility, accept dif- ferences in others,” wrote one participant. Further, another survey participant reported: “The way that psychology classes and textbooks describe autism is often insulting, and presented entirely from a neurotypical point of view. Any classroom discussion of autism should include autistic perspectives, and be mindful of the idea of neurodiversity.” Concerns about negative attitudes extends beyond the class- room and in to the production of educational materials.

The next four most reported desired accommodations from the survey include: sensory friendly spaces and prac- tices (to be discussed more fully below), educational prac- tices designed for multiple learning preferences, a disabil- ity support group, and more acceptance of self-stimulatory behavior, or “stimming”, such as rocking back and forth or flapping hands. These accommodations are not traditionally academic and reflect the previous finding about incompat- ible assumptions between faculty/staff and autistic students about the needs of these students (Knott and Taylor 2014).

Four participants in the survey and seven in the focus groups suggested that providing mentors, especially for new students who identify as disabled, would be useful for social, academic, and emotional support. However, there ere mixed opinions regarding whether mentors should also be disabled or autistic and what precisely their role should be (i.e., show around campus, support for first year, check in regularly throughout time on campus, as an adult aid).

The request for educational practices for a variety of learning preferences is reflective of the need for UDL, a term that four participants specifically used at least one time in a survey or focus group response. In this area, participants suggested that professors be trained on multiple learning preferences and multiple teaching styles and encourage not only lessons being taught with visual, auditory, and kines- thetic strategies, but also allowing students to demonstrate knowledge in these formats. This solution aligns well with other requested and, for some, received, accommodations such as flexible assignment due dates and formats, optional group work, and clear instructions provided in multiple formats.

There were several other desired accommodations noted with less frequency but which align well with a UDL approach to higher education. Five participants made com- ments about the desire to be able to better tailor a curriculum to their interest or skill set. One participant stated: “I wish I could customize my degree requirements” and another expressed a desire to opt-out of courses they believe they will never use.5 Further, five participants desired the option

5 This is certainly not an autism-specific desire. In fact, a 2007 report by researchers at James Madison University found that undergradu- ate students in general are dissatisfied with general education require- ments and would prefer more freedom and control over the direction of their studies (Harmes and Miller 2007).

 

 

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to take a reduced course load and still be considered full- time. Participants reported being excluded from grant and scholarship opportunities despite high grade point averages (GPAs) because they were not considered full-time. Other participants wanted more control over arranging their sched- ules and desired preferential registration in order to do so. Three participants desired advanced registration in order to obtain a preferred schedule. One student wanted a class schedule that would allow being “at school 3 days/week, with days in between [to] just do homework.”

While only eight (12%) survey participants commented on the need for more online courses and online commu- nication methods, seven (23%) focus group participants made comments in this area. Given previous research not- ing autistic students express a preference for online learning options (Satterfield et al. 2015), this is lower than expected. However, there were no specific questions on the provision of this option, which may have yielded more comments on this preference.

Four focus groups included comments on whether accom- modations should be provided to people who do not have an official disability diagnosis or designation, two of which had extended conversations on this topic. Eight (26%) par- ticipants argued that accommodations should be available to students without a diagnosis while one (3%) argued strongly against this practice. One (3%) participant made comments both for and against accommodations for people without diagnoses, but in different conversations. Those who agreed accommodations should be available without a diagnosis noted that not having an official diagnosis does not mean a student does not identify as disabled or as having needs.

Providing accommodations without the requirement of disability suggests, to some, that the classroom is a safe space. One participant noted that if professors and staff agreed to provide accommodations without “proof [… this would go] a long way to building trust and a feeling of safety.” Other participants noted that even students who do not identify as disabled may find some accommodations helpful. One focus group member noted that “everyone needs accommodations, and everyone is special, so using those words for us reinforces separate and unequal.”

The participant who was not in favor of providing accom- modations to students without a diagnosed disability argued that the process of obtaining a diagnosis is rigorous and the purpose of providing accommodations is to level the play- ing field and so providing them to students who do not go through the process and who are not disabled is unfair. One solution offered, and agreed with by other participants, was to make the process required to obtaining a diagnosis itself more accessible. “[P]erhaps,” one participant suggested, “schools could [make] it easier to seek out diagnosis and [provide] access to diagnostic services free or at a reduced cost.”

Discussion

This article reports the results from a national exploratory study that utilized both an online survey and online, follow- up focus groups to gather information from sixty-six autistic adults about their experiences in higher education as well as their thoughts on how these experiences could be designed to be more autism-friendly. Specifically, this study focused on the accommodations autistic students reported receiv- ing, their satisfaction with these accommodations, and what accommodations they would like to have received. Overall, participants in the current study reported mixed levels of satisfaction with the accommodations they received. Many found accommodations focused on academic needs but did not meet two primary concerns: sensory and social needs. In response to these concerns, recommendations for institutes of higher education in the areas of sensory needs and the creation of a neurodiverse space are now provided.

Recommendations

As noted, participants were also asked how institutes of higher education could be made more ‘autism-friendly’. The below recommendations are built from those sugges- tions and, where available, previous literature in the area. Based on frequency of suggested need, recommendations are focused on social accommodations and neurodiverse campus spaces. See Table 3 for an overview of recommendations.

Social Accommodations

Many participants in this study and in previous studies reported difficulties navigating social situations at institutes of higher education and indicated a need for more services designed to improve the social life of autistic students. A survey of Australians students who identify as being on the autism spectrum reported that, while about 63% of students reported having their academic needs met, only around 27% reported having their social needs met. A literature review by Gelbar et al. (2015) found that, similar to the results of the current study, the most commonly reported social-emotional challenges are anxiety, loneliness, and depression. Among their participants, 56% reported feeling lonely, 61% reported feeling isolated, and 42% reported feeling depressed. They concluded that it “may be important for colleges to pro- vide these students with the opportunities to acquire more advanced social skills” (p. 49).

Although the current study did not question participants about their level of social interactions on campus or feel- ings of loneliness or community involvement, many par- ticipants noted that they would have liked to receive some

 

 

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accommodation that addressed social needs when asked about desired accommodations and unmet needs. Most of these were in the form of either desiring a disability sup- port group with low-impact, sensory friendly events or the availability of mentors. Participants suggested a variety of models or features of these supports, which institutes of higher education can consider, however, in line with dis- ability advocacy recommendations (Charlton 1998, 2006; Jaeger 2005), it is recommended that individual institutes gather input from enrolled autistic students to ensure the social supports meet the needs of current students.

A recent review of literature on social support groups for autistic adults looked at the impact of both formal and informal social support groups on quality of life. The authors concluded that a model incorporating some of the structures of formal social skills instruction into more informal social support groups may be most useful (Tobin et al. 2014). This suggestion is in line with the recommendations from the participants in the current study. On participant noted that structured activities can “provide scaffolding for social inter- actions and predictability in what is going to happen” but also suggests pairing this with “unstructured time to accom- modate neurotypical needs for self-directed socialization.” Others suggested that social groups should be organized around the interests of the individuals in the group. For instance, campuses could host activities and events set on a regular schedule (i.e. every Monday evening) in which group members can choose to participate or not. Group members can be provided opportunities to nominate these activities or events to ensure they are of interest to the group. If activi- ties are located on campus in a designated space, such as the space described below, individuals can attend and participate or stay close, but choose not to interact with others or engage in the organized activity. An interesting model proposed by a survey participant is to have sessions wherein group

members could indicate an interest they have or would like to learn about, perhaps with a visual indicator (i.e. a picture of a board game, TV show, or restaurant), and stand by their indicated topic. Other students can then approach the student who is hosting that interest and decide on shared activities to participate in or simply have a conversation about that interest. In this way, small groups or pairs of students can find others with common interests.

In a focus group discussion about the inclusion of neu- rotypical people in support or social groups, the general consensus was that these activities should be for autistic or disabled students only. One focus group member noted:

I think autistic/disabled students should perhaps have their own organization(s) or space where they run cultural and educational events and neurotypical or abled students are welcome to come and listen and learn something. But we need to be in charge of the space and event and they need to always be viewed as a guest, in order for it to not verge into patronizing, othering, charity territory.

In this way, other people can learn more about and inter- act with the autism community in ways that autistic students design. The concern about the involvement of neurotypical students was echoed by another participant, who stated “I can’t really think of a realistic way to create a non-awkward social group with neurotypical students that doesn’t feel like somebody is assigning me friends.” While support for get- ting along and communicating with neurotypical students and staff was of interest to several participants, this is a need participants felt should be fulfilled with the use of social skills counseling, social mediators, or a neurotypical mentor.

While social skills counseling and training is a well- established strategy (Cappadocia and Weiss 2011; Otero et al. 2015; Rao et al. 2008), the use of social mediators

Table 3 Overview of recommendations

Social accommodations  Disability support group with low-impact, sensory friendly events organized around the interests of the individuals in the group  Peer mentors trained on neurodiversity and autism to encourage and attend social events with, check-in regularly, and answer questions about

interactions with peers  Mediators trained in neurodiversity, autism, and mediation to help with interactions with staff and faculty

Neurodiverse space  Physical space for social gatherings, sensory time, and/or escape room with low lighting, low noise, and a policy of no strong smells  Sensory time should allow and encourage multi-sensory engagement and multiple seating options  Available, quiet space with noise cancelling headphones where students can be alone for some time

Other recommendations  Staff, faculty, and administration training on autism, neurodiversity, and accommodations for in and out of the classroom. Autism awareness

programing for peers  More inclusion of autistic feedback on program development  Disability focused suicide prevention programs  Autism awareness programing for peers

 

 

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and neurotypical mentors are alternative ideas that have overlapping roles. Mediators were suggested by partici- pants for a range of situations, such as providing sugges- tions for encounters with neurotypical staff or students. Research on mediation in higher education focuses largely on the legal and interpersonal mediation needs of faculty members and students, finding official mediation programs to be effective (Klingel and Maffie 2011; Miller 1987; Yarn 2014). There is little work looking at mediation for issues related to disability. One study trained enrolled students with disabilities in self-advocacy and conflict resolution, finding the training to be useful and valuable for students and staff (Palmer and Roessler 2000).

Disability-focused mediation would be helpful for insti- tutes of higher education and their students with disabili- ties. Mediators specifically trained on disability-related issues could be part of campus disability services offices and assist students with communicating or interacting with accommodations needs and legal concerns but also conflicts involving roommates, group members for class activities, professors, members of a campus group, or peers on campus with whom the student is having chal- lenging interactions.

Relatedly, peer mentors have been found to be useful for student retention, post-graduation employment, and sociali- zation for students with and without disabilities (O’Brien et al. 2009; Redmond 1990; Segall et al. 2016; Whelley et al. 2003). These roles are more causal than that of an official mediator. Neurotypical, peer mentors can be student vol- unteers who, in the words of one participant, “attend some regular school events with the autistic students to help them get more comfortable,” as well as check in regularly with the student, encourage more social activities, and answer ques- tions about social interaction strategies of non-autistic peers.

Many current autism-focused college programs have some sort of social-focused mentoring program, some of which employ peer mentors. Several utilize program staff or graduate students with whom to engage in social activi- ties. Many programs are developed and run by psychologists or social workers with specialized experience in autism. It is recommended here that programs be designed with the specific campus and student body in mind and respondent to feedback from enrolled autistic students. Additionally, while mentors can be peers, mediators should be an official campus role fulfilled by a staff member who has training in mediation and is well versed in campus regulations and pro- tocols. Students who request mediators and mentors should have the option for continuous assistance over the course of a semester or academic year(s) or request assistance on a periodic, as needed basis. Both mediators and mentors should be trained in neurodiversity and autism and can, as one participant explained, “bridge what constantly feels like a culture gap.”

Neurodiverse Space

Neurodiversity scholars Bertilsdotter Rosqvist et al. (2013) explored the concept of shared and separate spaces as it relates to autism, social interactions, and friendships. They argue that shared spaces, which are ambiguous and com- prised of people with a range of social identities, can be threatening to people of difference. As it relates to autism and neurodiversity, this space is often called ‘normal’, ‘nor- mate’, or ‘mainstream’ spaces. Separate spaces, those that are dedicated to individuals who share certain social identi- ties, most often those considered to be of an outsider status (e.g., ‘gay space’), can feel safe and inclusive. Neurodiverse spaces, online and physical, allow autistic individuals to open up about their neurostatus, develop friendships, and unite over common issues and concerns, including strate- gies for interacting in ‘normal’, or neurotypical spaces. In this space, autism-specific definitions of friendships can be enacted (Bertilsdotter Rosqvist et al. 2013; Brownlow et al. 2015; O’Dell et al. 2011). For the purposes of the current work, it is proposed that making a neurodiverse space avail- able to autistic students will provide opportunities to take a break from the stress of navigating neurotypical spaces and develop friendships, which can reduce the oft-reported feel- ings of loneliness and anxiety (Fabri et al. 2016). Specified spaces for students of similar cultures and identities may help with student retention (Braxton et al. 2007), which, as noted in the introduction, is an issue for disabled students.

While separate spaces for autistic students was not reported as a desired accommodation on the survey (likely because the focus of the survey questions were on academic situations), comments about the need for sensory-related accommodations were second only to more autism aware- ness in the area of desired accommodations. These com- ments suggest autistic students could benefit from a separate space designed for their needs. These kinds of accommoda- tions were more often discussed in the focus groups, where fourteen participants provided suggestions for the creation of an autism-friendly space on campus.

One of these suggestions was to create a simple meet- ing space to facilitate the type of social support outlined above. This space would need to be attentive to the sensory needs of members. A recent review of autistic autobiogra- phies identified needs of and suggestions for autism-friendly architecture that is attentive to sensory needs, noting the need for sensory rooms and escape rooms. Sensory rooms are those that offer multi-sensory engagement and explora- tion using light, textures, colors, and sound (Kinnaer et al. 2016). There is evidence that many autistic adults experience sensory over-responsivity (Tavassoli et al. 2014) and that sensory experiences are related to emotions and function (Robertson and Simmons 2015). Even small environmental modifications could reduce distress and improve quality of

 

 

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life (Robertson and Simmons 2015; Tavassoli et al. 2014). Further, recent review of the literature finds that sensory integration training has some positive effects for children (Lang et al. 2012) and a pilot study of a sensory room in an adult inpatient psychiatric facility found it led to reduced distress as reported by its users as well as reduced observed disruptive behavior (Novak et al. 2012).

Further, rooms with low lighting, low noise, and a policy of no perfumes or strong smells that autistic students can access may lead to beneficial quality of life and academic changes. The space should also have a variety of seating options, such as armchairs, ball chairs, beanbags, and com- fortable floor seating. Additionally, there can be an area, or areas, of the room dedicated to people wanting to be in the space, but not interact with others. Escape places, which are locations to which a person can retreat (Kinnaer et al. 2016), should be incorporated. Focus groups participants expressed a desire for places like this to engage in stimming behaviors and rooms in which they can lock the door and retreat for some time. Two participants suggested that these rooms be located near a disability or counseling office so individuals in distress can quickly and easily access those resources.

One participant argued against the need for these spaces, noting “I’m against institutional safe spaces. Campuses nor- mally have plenty of quiet places that students can use on their own to create safe spaces. Students should be encour- aged to organize themselves and take initiative to create their own safe space. College is about learning to function in the real world, which requires independence.” This comment speaks to the need for autistic people to learn to navigate the neurotypical world, and suggests that safe spaces will hinder that skill set. It seems that this strategy is being employed by autistic students; several participants identified the library as a safe space on campus.

Physical space is often scarce at institutes of higher education, so combining social and sensory spaces into one location may be the best option. A single, designated neurodiverse space can have dedicated sensory, stimming hours and dedicated meeting or socializing hours. Regard- less of time, a cubicle or otherwise sectioned off area could be available as an escape place, which should have a door, an occupied sign, and noise cancelling headphones. Addi- tionally, online spaces are an easy option to provide autistic students. Research has found autistic students prefer online interactions with campus staff, peers, and each other (O’Dell et al. 2011; Satterfield et al. 2015). Developing an online support and networking space where autistic students can share experiences, request advice, and develop friendships is important for addressing the social needs of this community.

Additional Comments

The need for more autism awareness and understanding by staff and peers was a frequently reported need by par- ticipants. Campus initiatives, workshops, and trainings on this topic need to be designed with the input of autistic people and focus on the variability within the community and the benefits of neurodiversity both in and out of the classroom. As noted by one of the participants of the cur- rent study, these trainings should involve non-faculty staff, such as security and medical personnel. Trainings should include useful strategies to employ in and out of the class- room, which should also be addressed in pedagogical train- ing received during graduate or professional school. While these trainings can be rolled up into general disability train- ing, the rising numbers of neurodiverse students in higher education may warrant autism-specific trainings for faculty, administration, and staff. These trainings may help with the issue reported by participants of discriminatory class dis- cussions and materials as it will prepare faculty to identify and discuss these instances. Further, given the high rates of distress noted in this and previous research, campuses should develop suicide prevention or crisis intervention programs targeted at students with disabilities.

Issues of inconsistent implementation and difficulty obtaining accommodations are of concern. Non-compliance likely reflects the difficulty with faculty and staff buy-in noted above and, though not frequently reported, is a serious breach of disability law and practice. Obtaining accommoda- tions often requires some combination of acquiring official testing and diagnoses, providing documentation of a diag- nosis and/or needs, and regular meetings with disability ser- vices staff.6 This process is often long and complicated. At least one participant envisioned a solution grounded in UDL: “I wish classes were designed in a way that accommodates all learners, rather than only using lectures. […] Extended test time and taking breaks helps, but I really want colleges to become more aware of universal design, and apply it.”

Many of the autistic students who participated in this study reported being dissatisfied with the accommodations they received, particularly needs that are not traditionally academic, such as psychiatric, sensory, or social needs. Insti- tutes of higher education need to include a broader range of accommodations needed for academic success. For instance, the acceptance of self-stimulatory behaviors is important for attending to sensory concerns and often assists students with focusing. The current article provided specific recommenda- tions for attending to the social and sensory needs of autis- tic students through the development of support or social

6 This data was collected but not include due to space constraints. However, it is available upon request.

 

 

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groups and neurodiverse spaces. The input from participants in the survey and focus groups was included in suggestions on creating these spaces, however, it must be emphasized that individual institutes should reach out to their autism communities to best design these spaces and opportunities.

Limitations and Future Directions

There are some limitations to the current study that suggest areas of more focused, future research. The current study did not include information on race or ethnicity or current income. These factors may provide important insight into the types of participants likely to provide input on a study such as this one. Additionally, there was no information on what autistic traits or symptoms participants exhibit nor the level of significance of their disability or impairment. Though designed for accessibility, the survey likely failed to capture individuals who are more significantly disabled and, thus, unable to fill out the survey and focus group forms. This suggests a selection bias such that this participant group may reflect individuals with certain manifestations of autis- tic traits and a lower level of impairment. Future research on the experiences of students with more significant disabilities would provide interesting insight into their unique provision needs and satisfaction with accommodations. This research would need to be carefully designed to encourage and enable access for these individuals. Additionally, given the stated focus of the study was to gather information for more autism-friendly post-secondary opportunities, it is possible the individuals who chose to participate are more involved in neurodiversity, and thus are commenting from that per- spective. Finally, more strenuous reliability procedures could have been taken, however it was determined that given the study’s exploratory nature and the fact that the PI was the sole coder of the dataset, the reliability measures used were deemed appropriate. However, at sixty-six respondents, this study is a larger national sample of autistic individuals on the topic of post-secondary opportunities in the U.S. as com- pared to previous research, such as Gelbar et al. (2015) at thirty-five participants and White et al. (2016) with five par- ticipants. While more research needs to be done, the number of participants and geographic range is notable.

Implications

As the population of neurodiverse students entering insti- tutes of higher education rises, it is imperative to pay more attention to developing post-secondary experiences that are more widely accessible and universally designed. Many of the suggestions here, such as clearer instructions, multi-modal learning and teaching strategies, and the use

of mentors and mediators, are useful for a range of students, such as those with other disabilities, international students, and many non-disabled students. By focusing on UDL with autism in mind, any student with communication, physi- cal, sensory, social, academic, executive functioning, or independent living needs will be better set up to succeed in higher education.

Acknowledgments I would like to acknowledge the assistance of Sierra Weiss in distributing the survey information and with coding the result- ant date. Additionally, I would like to thank Julia Bascom for her input on the survey questions as well as Dr. Shan Mukhtar for her comments and feedback on the survey questions and design as well as an early version of this article.

Author Contributions As the sole author, JCS is responsible for all aspects of the current article, from conception to implementation, analysis, and article construction.

Compliance with Ethical Standards

Conflict of interest Jennifer C. Sarrett declares that she has no conflict of interest.

Ethical Approval All procedures performed in studies involving human participants were in accordance with the ethical standards of Emory University, whose Institutional Review Board approved the current study on April 8, 2016 and assigned the study the identification code of IRB #00087911. Thus, the study is in compliance with the 1964 Helsinki declaration and its later amendments.

Informed Consent Informed consent was obtained from all individual participants included in the study.

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