Abstract
Keywords
Young adulthood is generally recognized as a period of transition involving the development of a sense of self and establishment of a personal life outside one’s immediate family (Geller & Greenburg, 2010). The transition to college and the experiences of daily college life entail countless challenges, including adjusting to higher academic expectations, adapting to new social roles, coping with financial stresses, and managing increased independence (Drum, Brownson, Denmark, & Smith, 2009; Pryor, DeAngelo, Palucki Blake, Hurtado, & Tran, 2011).
The diagnostic criteria for autism spectrum disorder (ASD; American Psychiatric Association, 2013) identify concerns with the characteristics and range of social interaction and communication abilities as well as with restricted or repetitive behaviors, interests, or activities (including sensory reactivity). Students with ASD therefore face specific challenges in the transition to college beyond those of students who are neurologically typical or not on the autism spectrum.
With the rising prevalence of people with ASD (Centers for Disease Control and Prevention, 2014), the focus on providing support services to improve functional participation in life activities is well understood. Long before contemplating college, students with ASD generally struggle with mastering the developmentally appropriate expectations of the school environment throughout elementary, middle, and high school because of the characteristics of their disorder (Foley Nicpon, Doobay, & Assouline, 2010). The Individuals With Disabilities Education Improvement Act of 2004 (IDEA; Pub. L. 108–446) mandated that appropriate supports and services be provided to children and youth with disabilities in school programs, including an additional requirement since 1990 for adequate transition planning to address the needs of these youths before high school graduation. As a result of the improved quality of services in schools through IDEA, increasing numbers of high school graduates with ASD are making their way onto college campuses (Crabtree, 2011; VanBergeijk & Cananagh, 2012; Zager & Alpern, 2010).
Success in the college environment is heavily dependent on the supports and services provided to students with ASD to address key challenges beyond academics, which may include interacting with peers (e.g., roommates, group members), attaining the necessary independent living skills, and adapting to a continuously changing environment (Adreon & Durocher, 2007; Brown, Wolf, King, & Kukiela Bork, 2012; Glennon & Marks, 2010; Roberts, 2010; VanBergeijk, Klin, & Volkmar, 2008). However, the literature reports that people with ASD are less likely to receive formal services after leaving high school and are more likely to disengage from postsecondary education than their neurologically typical peers (Hendricks & Wehman, 2009; Shattuck et al., 2012; Wei, Wagner, Hudson, Yu, & Shattuck, 2015).
Purpose
The purpose of this exploratory and descriptive investigation was to identify the perceptions, preparedness, and practices of college personnel responsible for designing supports for students with ASD. Many people with ASD are intellectually capable of completing the academic demands of a college experience (VanBergeijk et al., 2008; White, Ollendick, & Bray, 2011), and many adolescents, with the support of their parents, aspire to attend college (Camarena & Sarigiani, 2009). Despite the imperative to address specific college transition needs for students with ASD (Adreon & Durocher, 2007; Glennon, 2001b), the outcomes, scope, and format of best practice supports are not clearly documented in the literature. As a first step, understanding the types of supports and strategies that are or are not being implemented by those responsible for designing and documenting specific educational supports is an area worth investigating.
Method
Research Design
The author created an online survey compliant with the Americans With Disabilities Act of 1990 (ADA; Pub. L. 101–336) to explore the perceptions, preparedness, and practices of college personnel related to students with ASD. Respondents provided informed consent before accessing the electronic survey, consistent with institutional review board (IRB) specifications.
Participants
The survey target population was college personnel responsible for or involved with designing or implementing support services for students with disabilities under the ADA mandates. Thus, the inclusion criterion for this survey was membership in the Association on Higher Education and Disability (AHEAD), a professional membership organization for those involved in the delivery of quality services to meet the needs of people with disabilities in higher education.
After review and approval by the Quinnipiac University IRB and the AHEAD Research Committee, AHEAD members were recruited through three email messages sent by the AHEAD executive director. The recruitment email included a survey link where recipients could view a description of the research, including the nature of the study, potential risks, confidentiality procedures, researcher contact information, and informed consent. Recipients were informed that participation was voluntary and anonymous, that they would experience no repercussions for choosing to exit the survey or skip questions, and that only answers to the point of discontinuation would be analyzed. Respondents were asked to provide their professional title and level of involvement in designing or implementing services for students with disabilities. Respondents not involved in the design or delivery of such services were excluded from the dataset.
Instrumentation
Lack of a standardized survey instrument is a limitation of this study, and every effort was taken to ensure comprehensive and valid content for this researcher-developed tool. The survey was created using three sources:
Seventeen items were repeated from a 2001 survey regarding the practices and attitudes of AHEAD members in supporting students with ASD (Glennon, 2001a). These 17 items were originally identified from a pilot study and modified on the basis of feedback from subject matter experts (personal communication, Temple Grandin, Tony Attwood, Peter Gerhardt, Carol Gray, and Brenda Smith Myles, April 2001).
Thirty-nine items reflected activities identified by college students with ASD and their parents as difficult or stressful in a 2009 survey (Glennon & Marks, 2010).
An exhaustive literature review through 2012 identified the types of supports students with ASD require in the college environment. Because of the dearth of evidence-based outcomes reported for such supports at the postsecondary level, suggestions and strategies from subject matter experts were included (e.g., Brown et al., 2012; Wolf, Brown, & Bork, 2009). Additionally, the reviewers cross-referenced the literature documenting evidence-based practices for youths and adolescents with ASD with the literature describing the academic, social, extracurricular, and residential demands for college students.
The final survey included items related to academic transitional situations, social activities, sensory needs, attention and organization, self-advocacy and self-disclosure, and emotional regulation. The demographic portion of the survey contained questions related to student body size, school geographic location, ASD population, respondent’s level of involvement in delivery of services, and respondent’s degree of knowledge related to diagnostic concerns.
Results
Demographics
The 488 survey respondents represented all regions of the United States and both private and public colleges or universities. A total of 315 completed the survey and formed the sample for this analysis. Nearly all (97%) respondents reported having students who had disclosed an ASD diagnosis. Additionally, of respondents who reported self-disclosed students on campus, 88% indicated their belief that students with ASD who had not self-disclosed were also present on campus. Ninety-four percent of the respondents were responsible for or involved in designing service supports for students with ASD. Table 1 documents the varying levels of respondent training on the topic of ASD, ranging from reading some articles to participating in several days of workshops.
Respondents’ Training Related to Providing Supports for Students With Autism Spectrum Disorder (N = 305)
Preparedness for Providing Student Support Services
Of the 296 respondents who were primarily responsible for or involved with planning needed supports, 55% indicated having some understanding of ASD but felt the need for additional information. Additionally, 63% indicated that their institution struggled with outlining the supports needed for students with ASD and would have liked to know more about how to support these students. These findings extend an understanding of the perceived needs of AHEAD members and highlight the call for further education and training on how to support students with ASD.
Perceptions and Practices Regarding Support Services
Of the 307 participants who answered this question, 83.4% noted that the ADA requires academic support for students with ASD. However, when asked whether the ADA requires support for other campus-related activities, only 52% identified support for residential life experiences and 42% support for involvement in extracurricular activities as required by the ADA.
Table 2 lists the respondents’ perceived need for a variety of support strategies. More than 80% of respondents indicated a probable or absolute need to share college and environmental expectations with high school teams, to survey the college environment for potential areas of difficulty and areas of growth, and to educate students with ASD on the unwritten rules of university life. However, of those who indicated a need for these supports, very few typically implemented such supports. Only 17% typically shared college and environmental expectations with high school teams, 21% typically surveyed their college environment for potential areas of difficulty and areas of growth, and 16% typically educated students with ASD on the unwritten rules of university life. Table 3 presents the type of supports provided by the respondents who indicated a probable or absolute need for the specific support.
Needed Supports for Students With Autism Spectrum Disorder (N = 302–305)
Implementation of Supports Identified as Needed for Students With Autism Spectrum Disorder
Discussion
This study of 315 college personnel responsible for designing supports for students with ASD revealed that the scope and format of supports vary considerably across postsecondary institutions. This finding is congruent with Autism Speaks’ (2011) assertion that the level of supports and their efficiency and effectiveness vary from school to school. Yet, Pinder-Amaker (2014) highlighted the importance of offering services in a coordinated manner within and between systems to support students more effectively.
In terms of preparedness, three-quarters of the respondents had had several trainings on the topic of ASD within the past 5 yr. However, more than half felt the need for additional information, and nearly two-thirds were struggling with outlining the supports needed for students with ASD and would have liked to know more about how to support these students. These findings are supported by Tipton and Blacher’s (2014) finding that campus faculty had limited knowledge about autism. If the occupational therapy profession aims to be widely recognized, as the Centennial Vision articulates (American Occupational Therapy Association [AOTA], 2007), college disability support personnel are a stakeholder group prime for advocacy and marketing regarding the distinct value of occupational therapy. Occupational therapy’s expertise and familiarity with ecological assessment, functional activity analysis, problem-based decision making, and contextual influences on a person’s occupational performance make the profession a natural fit to support people with ASD with their postsecondary needs (AOTA, 2010, 2012).
Some of the perceptions and practices of the college personnel in this study seem incongruent and open to interpretation. The respondents indicated a need for particular support strategies but reported that these strategies were not implemented. This finding is similar to Cook, Rumrill, and Tankersley’s (2009) finding of a pronounced discrepancy between where faculty felt they should be and were they actually were with respect to working with students with disabilities. Several factors may interplay to cause this discrepancy, including lack of knowledge about how to implement successful strategies, difficulty with implementation, restricted funding, staffing limitations, or low perceived responsibility to provide a specific support.
Regardless of the reason, the case can be made for occupational therapy to assist college personnel in their efforts to help students with ASD successfully engage in contextually based activities. Consultation or collaboration by occupational therapy practitioners with college staff can help identify strategies that are required to be provided under Section 504 of the Rehabilitation Act of 1973 (Pub. L. 93–112) and the ADA. These federal mandates, essentially the same in higher education as at other education levels, provide equal opportunity to participate in programs and activities by requiring reasonable accommodations to ensure meaningful access. Additionally, for colleges that charge a fee to students and their families for additional supports or programs, occupational therapy practitioners can play a key role on the support team. This fee-based expansion of support services is increasing at colleges and includes academic, residential, campus life, social, psychoeducational, and vocational supports. Thus, employment for occupational therapy practitioners on college campuses may be a fast-growing niche area of practice.
A more recent legislative ruling under the Patient Protection and Affordable Care Act (ACA; Pub. L. 111–148), which can provide financial support for direct occupational therapy services to people with chronic conditions, involves habilitative services. Under the ACA, habilitative services are identified as an essential health benefit. Habilitation, as defined by the U.S. Department of Health and Human Services (2015), includes
health care services and devices that help a person keep, learn, or improve skills and functioning for daily living. Examples include therapy for a child who is not walking or talking at the expected age. These services may include physical and occupational therapy, speech–language pathology and other services for people with disabilities in a variety of inpatient and/or outpatient settings. (p. 10811)
Habilitation services are separate from the category of rehabilitation, have no age limits, are unambiguously designed to help people learn new skills to function or maintain current functional skills, and are therefore applicable to people with ASD as they attempt to engage in their new role as a college student. Thus, marketing occupational therapy services to the families of students on the autism spectrum would be a viable opportunity because payment for direct intervention would be funded for consumers with insurance plans purchased under the ACA.
Implications for Occupational Therapy Practice
The results of this study have the following implications for occupational therapy practice:
Occupational therapy practitioners in school-based practice need to advocate the distinct value of having occupational therapy on the transition team for students moving on to postsecondary education.
Practitioners participating in transition planning need to survey the academic, social, and activity participation requirements of the college environment to effectively create a transition plan to postsecondary environments.
Practitioners who have expertise in and knowledge about how to support people with ASD must step forward and expand practice to the nontraditional environment of college campuses.
Conclusion
Many people with ASD are intellectually capable of completing the academic demands of a college experience yet have diagnostic concerns leading to difficulties with many facets of college life. How postsecondary institutions identify, design, and deliver best practice support services is a future trend worthy of attention by occupational therapy providers.
Footnotes
Acknowledgments
Special thanks to Quinnipiac University graduate students Alexandra Gudlevich and Alexandra Smith for survey design and implementation assistance and Jackie Matthius and Allyse Zaffos for literature reviews.