How Social Identities Affect Students with Autism for Transition to College

RESEARCH & ASSESSMENT

How Social Identities Affect Students with Autism for Transition to College

Edlyn Vallejo Peña
Jodie Kocur
California Lutheran University

In 2009, the United States Government Accountability Office reported that students with disabilities now comprise one in 10 college students. A more recent survey of four-year colleges and universities reported that nearly 15% of enrolled first-year students reported a disability (HERI, 2011). The enrollment of college students with autism spectrum disorder (ASD) in particular is projected to increase with growing diagnostic rates and more robust educational supports in the K-12 system. ASD is a developmental disability that can cause college students to experience challenges in communication, socialization, sensory processing, and restrictive and repetitive behaviors (Peña & Kocur, 2013). Today, 30% of students with ASD who complete high school attend college (Roux, Shattuck, Rast, Rava, & Anderson, 2015), rightfully making their way into postsecondary institutions. In 2008-2009, approximately 78% of four-year public institutions enrolled students with ASD (Raue & Lewis, 2011), though that percentage is presumed to be higher today. Additionally, because many students do not disclose their disability once in college, these findings likely under-report the presence of students with ASD (Newman, Wagner, Cameto, & Knokey, 2009).

While access to college is improving for students with ASD, they are less likely to transition to college, compared to students without disabilities and even students with other kinds of disabilities (Roux et al., 2015). Further, the data disaggregated by other demographic factors suggest inequitable educational opportunities among students with ASD across different social identities, such as race/ethnicity and educational background. White students with ASD enter college at greater rates than their racial and ethnic minority peers; 41% of White students with ASD attend college compared to 23% of Black and 29% of Latino students with ASD. Furthermore, over 75% of students with ASD who enrolled in college had at least one parent with a college education. Students with ASD whose parents went to college were three times more likely to transition to college. This is likely because students with ASD must rely more heavily on parent knowledge, support and guidance to prepare for, transition into, and succeed in college than their peers without disabilities (Peña & Kocur, 2013).

Scholars are just beginning to understand the ways in which demographics and social identities shape the experiences of college and college-bound students with disabilities that produce cumulative disadvantages (Peña, Stapleton, & Schaffer, 2016). In one of the few research studies that reports first-hand experiences of college students with ASD, MacLeod, Lewis, and Robertson (2013) report in their findings that, “it is likely that some or all [participants] came from relatively privileged backgrounds. In gaining entry to higher education, they are a minority within the autistic community” (p. 46). What is not yet understood is how the identities of families of students with ASD enable the students to prepare for and transition into college. Because students with ASD typically require greater parental support during these life events (Peña & Kocur, 2013), we qualitatively examined the experiences of 29 parents and caregivers of students with ASD who prepared for and/or transitioned into college life. The research question that guided this particular analysis is: What role do family social identities play in supporting students with ASD to prepare for and transition into college?  

Method

We engaged in a secondary analysis of interview transcripts from a larger study exploring the experiences of parents of college-bound and college students with ASD. The methodological approach of the larger study involved a case study to concentrate on an in-depth analysis of an entity or bounded system (Patton, 2014). Case studies are useful in studying temporal processes to trace experiences, events, and changes over time. This approach allowed us to capture and analyze rich stories and experiences of an unknown phenomenon—the ways in which families as critical support systems play a role in supporting students with ASD to prepare for and transition into college. We employed purposeful sampling (Merriam & Tisdell, 2014) by identifying 29 parents in California whose students with ASD were either engaged in transition planning (while a high school junior or senior) or attending a 2- or 4-year post-secondary institution. To recruit participants, we emailed college disability support offices, clinicians who work with ASD clients, autism support group listservs, and posted on social networking sites.

Parent participants completed a demographic questionnaire and interview, lasting approximately one hour. The semi-structured nature of the interviews allowed us both the structure and flexibility to follow the parents’ lead when their recollections were rich and relevant. All 29 interviews were audio-recorded and transcribed. In our data analysis of the interview transcripts, we first conducted a within-case content analysis of individual participant transcripts in which we engaged in coding of text. We identified significant statements and core meanings about the role social identities played in supporting the postsecondary transition and development of each student with ASD. We then engaged in a cross-case analysis, enabling us to review and revise the codes across participants, grouping them into over-arching themes that answered the research question.

Results

This section begins with a description of demographic information and privileged identities of the families who participated in the study. We then present themes that represent the experiences which contributed to supporting the transition of students with ASD to attend college.

Privileged Identities

Important demographic trends emerged in terms of race, parental education, and household income of participants. Of the 29 participants, 24 participants identified as White. Three participants identified as Latina/o and two as multiracial. As far as parental education, only one student with ASD, of the 29 represented in the study, lived in a household in which neither parent had ever enrolled in postsecondary education. Two participants indicated that at least one parent in the household had experienced some college or postsecondary education. The overwhelming majority of parents had either graduated from a four-year college (n=11) or earned a graduate degree (n=15).

The majority of the parents in this study came from middle to high-income households. Of the 28 participants who answered the question about household income, 23 indicated that the household income was over $90,000 per year. This is at least $30,000 more than the median income for families in the state of California (where the study was conducted), and about $26,000 more than the median income for families in the United States at the time of the study (U.S. Census Bureau, 2013). Noting the household income of the participants is important because it signals access to critical therapies and supports that insurance companies and school districts may not cover or offer. At least 22 of the 29 parents reported spending hundreds to thousands of dollars annually on one or more of the following: speech therapy, social skills sessions, an attorney or advocate, tutoring, occupational therapy, an educational aide or tutor, college preparation program, and a psychiatrist or psychologist. One parent noted, “he went through the Fast Forward [reading] program, which totally is the best $3000 worth I spent.” This level of collective wealth, educational status, and racial privilege among participants likely provided advantageous opportunities for transition into college; this is supported by the existing literature on cultural capital, social capital, and student success (Bourdieu, 1986), as explored in the sections that follow.

High Parental Aspirations

Given that nearly all of the students with ASD lived in a household that had at least one parent with some college education, the majority of students grew up with parents who communicated high aspirations for their children to attend college. When asked about the time in which parents began thinking about college as a possibility for their child’s future, 18 of the 29 parents responded with “always,” “it was never a question,” or “it was never not considered.” In contrast, only five participants considered college a possibility when their child was in high school and the rest thought about it somewhere in between “always” and high school. Even when low expectations were communicated by high schools during the transition process, parents presumed competence in their students and developed high levels of aspirations for their educational futures. One parent said that transition planning “was discussed in IEP meetings, but [the school] really didn’t have or provide direction,” echoing the experiences of other students with ASD who experienced low expectations from teachers and administrators. In spite of such structural barriers to transitioning into postsecondary education, parents advocate and coach their students through the transition (Peña & Kocur, 2013), as confirmed in this study.

Exercising Cultural Capital

Parents exercised cultural capital to assist their students with ASD to navigate transitioning into higher education. Cultural capital is known as accumulated cultural knowledge that brings about social mobility, status, and power (Bourdieu, 1986). Individuals who come from privileged identities and experiences tend to accumulate cultural capital to navigate complicated processes, structures, and systems like the transition into and persistence in higher education. The overwhelming majority of the parents in the study employed cultural knowledge and tools to guide students with ASD in three ways. They used their cultural capital to research postsecondary options, navigate policies for transition and admission, and advocate for access to resources to support their college success and retention. One proactive parent explained:

You’ve got to get online. You’ve got to look at books. I think you have to connect with a
professional who has the clinical experience to be able to evaluate if your kid can make it
academically. And then I think it’s a matter of going [to the campus] and researching.

Another parent explained that she “had always talked about [college] because I went to college.” She demanded transition planning from her son’s high school and took her son to her college campus to familiarize him with college life. Other parents guided students in selecting academic majors and degrees—from a “math major and a screenwriting minor” to an associate degree in veterinary technology—in order to maximize their future career opportunities and mobility.

Employing Social Capital

Social capital involves the development of networks and relationships to others in order to gain access to important resources for social mobility (Bourdieu, 1986). Social networks tend to benefit people in privileged positions by enabling them to maintain their power through acquiring critical resources and opportunities. Parents in the study generated and tapped into extensive social networks within and outside of the schools and colleges in which the students attended. Parents generated social capital through relationships with educational advocates, psychologists, and educators to access opportunities, information, and resources to prepare students with ASD for access and transition into postsecondary education. Parents then advocated fiercely to make sure students received appropriate supports as they transitioned into college. This involved generating relationships with key institutional agents at the students’ colleges—from disability coordinators to academic advisors. While parents encouraged the students to develop these relationships, the parents themselves often stepped in. One parent told her son to “just go to [the disability services] office,” but she worried that her son was not yet equipped to exercise his self-advocacy skills. The next day, the parent took it upon herself to email the disability services coordinator to request assistance for her son. By tapping into this institutional agent, the student gained access to accommodations through the disability services office that were critical to college persistence.

Discussion

The findings of this study document the ways in which parents of privileged social identities—mostly White, college educated, and upper-middle class—mobilized to navigate and support their children with ASD through the transition process. By cultivating and employing high aspirations, cultural capital, and social capital, parents were advantageously equipped with knowledge, social networks, and the ability to tap into resources necessary for preparing students with ASD for college.

The results of the study suggest a number of implications for preparing, recruiting, and enrolling college students with ASD. The activities and practices in which families of privileged backgrounds engaged to mobilize their children’s access and transition into college can be instructive to other families who desire similar outcomes for their children. First, parents should develop high aspirations for their children to achieve a higher education. While students with disabilities typically experience additional educational challenges compared to students without disabilities, they have great potential to access postsecondary settings when high expectations and appropriate supports are in place (Cawthon, Garberoglio, Caemmerer, Bond, & Wendel, 2015). Second, families can make efforts to develop cultural and social capital to access resources important to transitioning to college. Toward this end, families can cultivate relationships with individuals who have college knowledge, visit and read about institutions of higher education, and participate in programs or services that provide access to transition resources.

Prior research has identified inequitable access to postsecondary education across race/ethnicity and parental education backgrounds for students with ASD (Roux et al., 2015). High schools and colleges must reconsider the ways in which they reach out to students with ASD and their parents, especially from disadvantaged backgrounds, to prepare them for the transition to college. Educators must involve parents and their students with ASD from marginalized backgrounds to develop college aspirations, advocacy skills, and social networks that will enable students to access and succeed in postsecondary environments. Federally-funded TRiO programs, for example, support first-generation, low-income students, and, in certain programs, students with disabilities specifically. High schools and postsecondary institutions can work with structured programs like these to reach historically underrepresented students with ASD earlier in the education pipeline. The findings of this study add another layer to our understanding of working with the broad backgrounds of students with ASD and provide contextual information about the experiences that lead to increased access and transition for these students.

Limitations

Two obvious limitations to our findings center on the study’s sample of participants. First, the participants lacked diversity in terms of race/ethnicity, educational background, and family income status. Thus, the participants are not necessarily representative of families in the United States who successfully support their children with ASD to transition to college, though these kinds of national statistics are not yet available. Second, we did not interview college students with ASD themselves. Without their voices, an incomplete body of knowledge about college opportunity, access, and choice is constructed. Adding the voices of students with ASD to future research will enrich our conceptions about transition experiences to college. In addition, future studies should consider studying experiences of students with ASD from an intersectionality framework. Intersectionality provides an appropriate lens from which to examine the ways multiple social identities—race/ethnicity, first-generation status, socioeconomic status—intersect along a continuum of (dis)advantage and (dis)empowerment for people with disabilities of all backgrounds (Peña, Stapleton, & Shaffer, 2016). Lastly, future studies should also include an exploration of institutional practices and cultures in supporting students with ASD to transition to college. Identifying patterns of systemic behaviors and policies will uncover enabling and disabling structures for the growing number of students with ASD entering our colleges and universities.

Discussion Questions

  1. Describe ways in which postsecondary institutions, particularly programs focused on outreach and recruitment of students, can reach out to historically underserved students with ASD and other disabilities.
  2. In what ways can institutions of higher education work with the K-12 system to develop college aspirations, advocacy skills, and social networks among students with ASD to enable them to access and succeed in postsecondary environments?

References

Bourdieu, P. (1986). The forms of capital. In J. G. Richardson (Ed.), Handbook of theory research for the sociology of education (pp. 241-258). New York, NY: Greenwood Press.

Cawthon, S. W., Garberoglio, C. L., Caemmerer, J. M., Bond, M., & Wendel, E. (2015). Effect of parent involvement and parent expectations on postsecondary outcomes for individuals who are d/Deaf or hard of hearing. Exceptionality, 23(2), 73-99.

Higher Education Research Institute (HERI) (2011). College students with “hidden” disabilities: The freshman survey fall 2010. Retrieved from http://www.heri.ucla.edu/pdfs/pubs/briefs/heri_researchbrief_disabilities_2011_april_25v2.pdf

MacLeod, A., Lewis, A. & Robertson, C. (2013). “Why should I be like bloody Rain Man?!” Navigating the autistic identity. British Journal of Special Education, 40(1), 41-49.

Merriam, S. B., & Tisdell, E. J. (2014). Qualitative research: A guide to design and implementation (4th ed.). San Francisco, CA: Jossey-Bass.

Newman, L., Wagner, M., Cameto, R., & Knokey, A. M. (2009). The post-high school outcomes of youth with disabilities up to 4 years after high school. A report from the National Longitudinal Transition Study 2 (NLTS-2), Prepared for the U.S. Department of Education (NCSER2009-3017). Retrieved from http://www.nlts2.org/reports/2009_04/nlts2_report_2009_04_complete.pdf

Patton, M. Q. (2014). Qualitative research & evaluation methods integrating theory and practice (4th ed.). Thousand Oaks, CA: Sage Publications.

Peña, E. V., &  Kocur, J. (2013). Parenting experiences in supporting the transition of students with autism spectrum disorders into community college. Journal of Applied Research in Community Colleges, 20(2), 5-12.

Peña, E. V., Stapleton, L. D., Schaffer, L. M. (2016). Diverse and critical perspectives on disability identity. In E. S. Abes (Ed.), Critical Perspectives on Student Development Theory (pp. 85-96). San Francisco, CA: Jossey-Bass.

Raue, K., & Lewis, L. (2011). Students with disabilities at degree-granting postsecondary institutions.(NCES 2011-018). U.S. Department of Education, National Center for Education Statistics. Washington, D.C.: U.S. Government Printing Office.

Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., and Anderson, K. A. (2015). National autism Indicators report: Transition into young adulthood. Philadelphia, PA: Drexel University.

U.S. Census Bureau (2013). Median income in the past 12 months (in 2013 inflation-adjusted dollars) by veteran status by sex for the civilian population 18 years and over with income. Retrieved from https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=bkmk.

About the Authors

Edlyn Peña is an associate professor and director of Doctoral Studies in Higher Education Leadership at California Lutheran University.  She is an award-winning researcher who studies social justice issues for students with disabilities, particularly autism, in the preschool through higher education pipeline. As the Co-Director of the Autism and Communication Center and member of the federal Intergency Autism Coordinating Committee, Peña is best known for her service to the autism community at the state and national level.

Jodie Kocur is an associate professor in the psychology department at California Lutheran University.  Dr. Kocur’s research interests include the transition to postsecondary education for students with Autism Spectrum Disorders (ASD) and the developmental origins of the experience and expression of anger in intimate relationships.  

Please e-mail inquiries to Edlyn Peña.

Disclaimer

The ideas expressed in this article are not necessarily those of the Developments editorial board or those of ACPA members or the ACPA Governing Board, Leadership, or International Office Staff.

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