Autism, Inclusion, and Communication in Higher Education

PERSPECTIVES

Autism, Inclusion, and Communication in Higher Education
Beth Brennan
Edlyn Peña
California Lutheran University

Introduction
The number of students identified with autism spectrum disorders (ASD) in schools and colleges is steadily climbing. Currently, prevalence of ASD in the United States is estimated at 1 in 68 students (Centers for Disease Control and Prevention, 2016). Since the implementation of the 1975 Individuals with Disabilities Education Act that set the groundwork for inclusion of students with disabilities into K-12 community schools in the United States, the number of students with ASD who have been included in general education curricula throughout their schooling has steadily risen (Kurth, 2015). Kindergarten-12th grade school districts across the country recognize that inclusion for students with disabilities is based not only on legislation but also on a culture of social justice and research which points to benefits for all students (Kalambouka, Farrell, Dyson, & Kaplan, 2007). As a result of these changes, access to supports from early intervention services for very young children with ASD all the way up through high school has meant that “a greater number of these young people are prepared and interested in attending university” (VanBergeijk, Klin, & Volkmar, 2008, p. 1362). Students with ASD who have been included in their community elementary and high schools are now gaining access to post-secondary environments, desiring to have equitable educational opportunities in higher education and to develop into independent and contributing members of society.

Student affairs professionals must become equipped, both in knowledge and practice, to support the growing population of college students with ASD. Today, close to one-third of high school completers with ASD gain access to college (Roux et al., 2015). Nearly 80% of four-year public institutions enrolled students with ASD in the 2008-2009 academic year (Raue & Lewis, 2011), a rate that has likely increased in the last eight years. While these numbers reflect progress in increasing access for this historically marginalized student population, students with ASD experience unique needs and challenges. For instance, research suggests that college students with ASD are at high risk of being disengaged from postsecondary education (Pinder-Amaker, 2014; Shattuck, Narendorf, Cooper, Sterzing, Wagner, & Taylor, 2012), often failing or dropping out due to “sensory, social, learning styles and organizational challenges combined with fatigue” (United States Autism and Asperger Association, 2013, para. 1). Therefore, the importance for student affairs professionals to have an awareness and acceptance of the needs of students with ASD has never been more critical.

While most students with ASD use traditional speech to communicate, estimates indicate that up to 40 percent of students with autism are minimally or non-speaking (National Autism Association, 2016). Current statistics show that while intervention can certainly improve speech capability for students with autism, 70% of students with ASD who are non-speaking develop production of words while only 30% gain phrased speech (National Institutes of Health, 2010). Those students have faced heightened challenges in finding their voice in general education settings. It is critical for student affairs professionals to understand that not being able to communicate through spoken word is not an indicator of cognitive ability. Motivated by the premise that all individuals have a desire and basic right to communicate, student affairs professionals will want to explore ways to include and support students who use alternative means to communicate. While basic rights for all students with disabilities are covered under the law — Americans with Disabilities Act Amendments Act (ADAAA), Section 504 of the Rehabilitation Act or the Workforce Investment Act (504), and Higher Education Opportunity Act (HEOA) — training for student affairs professionals must extend way beyond basic law in order to provide effective support for students who are minimally or non-speaking.

Supports and Services
Supporting the needs of students with ASD who use alternative means of communication becomes not only a requirement but also a positive focus for campuses that embrace a diverse student population. This begs the question: how does that focus play out in higher education supports and services for student affairs professionals? To help answer that question, we highlight the story of one college student who uses typing to communicate. Samuel Capozzi is currently a freshman at California State University Channel Islands (CI). Samuel did not have a reliable means of communication prior to the middle of his high school trajectory. At that point, Samuel was reading books for younger children and was doing simple math. He describes how, prior to becoming “a typer”, he learned incidentally through his environment and interactions with others. Once he was exposed to typing, Samuel decided to stay in high school an extra year to earn his diploma. The extra time that he spent was filled with accomplishments. Samuel took the National Latin Exam and graduated with honors. He was able to do these things through grit and determination. But he also had a very supportive school community. Samuel describes his experiences at CI this way:

As I understand it, I am CI’s first non-speaking, non-writing student. I simply can’t say enough about Disability Resource Programs at CI. I am truly embraced, and my presence is celebrated on campus. It’s a nice change! What inspires me most is my professors’ delighted responses and even shocked responses when they hear my cogent answers and read my strong essays. I hope to pioneer a path for other students who communicate differently that may come after me. Knowing this helps me forge on when I become overwhelmed! (Capozzi, 2016).

We invited Samuel to speak to over 350 educators, students, and families at the Spectrum of Opportunity: Autism, Inclusion and Communication Conference at California Lutheran University in March, 2016. This conference provided information on supporting students who use typing or letter boards to communicate. Samuel spoke to the social, academic and communication needs of a minimally speaking student with ASD in a university setting. The audience, including student affairs professionals, learned about the supports that were most helpful to Samuel in his university experience.

Campus Initiatives
There are four basic campus-wide initiatives that can set the stage for students who are minimally or non-speaking, like Samuel, to have a successful experience and make those campuses more desirable to all students when choosing a college. These involve initiatives that support a culture of acceptance, foster a culture of diversity, promote a culture of inclusion and focus on the consideration of practical realities.

Support a culture of acceptance
The most basic premise in acceptance of students who are autistic, including those who are minimally or non-speaking, into the campus community is to presume competence in their academic abilities. Lacking the ability to communicate verbally does not correlate with cognitive ability. Nor does it indicate a person’s desire to communicate. Presuming competence in enrolled students with ASD is the first step toward student success. In order to be a truly inclusive campus community, colleges and universities need to support the entire campus community in both learning about autism and increasing a culture of acceptance. As with any transformational change to an organization, sustainable change needs to involve the whole system. Myers, Ladner, and Koger (2011) argue that “current educational practices both alienate students with autism from their neurotypical peers and compel students to hide their autistic traits” (p. 517). A close examination of both formal and informal practices and traditions on campus will reveal weak points in developing a true culture of acceptance. And any proposed practices should not focus solely on the student with ASD adapting to the environment but on adjusting the environment and perceptions of student affairs professionals to the student.

Foster a culture of diversity
All campus conversations about diversity should include disability in that conversation. “As colleges and universities encourage increased diversity in their students and faculty, this is yet another aspect of diversity that must be considered” (Ashby & Causton-Theoharis, 2012, p. 277). Some have argued that not only is disability missing from conversations and initiatives surrounding diversity but that “disability seems harder for people without disabilities to celebrate and see as empowering” (Davis, 2011, para. 6). Autism is a form of diversity. We can look at a student with autism as someone who may learn differently, socialize differently, move differently and/or communicate differently. To truly embrace diversity, a campus must include a spectrum of diversity that includes autism rather than be limited to focus on one type of diversity (e.g.. race, religion). Campus culture that is high in acceptance of all forms of diversity will better support students with ASD including those who are minimally or non-speaking. This more comprehensive view of diversity builds stronger learning communities. Acceptance of diversity that is inclusive of disability will create learning communities that are more welcoming and willing to adapt for students with ASD who are minimally or non-speaking.

Promote a culture of inclusion
Inclusion is not a program. It is what happens when there is a culture of acceptance and diversity. It is a welcoming of contributions that students with autism who are minimally or non-speaking can make in the classroom and campus environment. It is membership in the campus community. It is also a ‘willingness to know’ on the part of student affairs professionals. Student support needs must be specific to the individual student’s challenges. The willingness to get to know a student can validate and affirm the student’s place in the campus community and will help the student affairs professional to design individual plans for support. This also naturally leads to greater retention and student success. In addition, knowledge about the attitudes and perceptions of neurotypical peers toward students with ASD can support the development of appropriate services and support programs (Matthews, Ly, & Goldberg, 2015).

Consider practical realities
Student affairs professionals must also think through the practical realities to support students with complex communication challenges on a daily basis. Particularly when minimally or non-speaking students with autism first transition into the college environment, they will more likely require higher levels of parent involvement in the transition process than is common for typical college students. Student affairs professionals can work with the campus disability office to make sure that all conditions for FERPA are being met if and when parents initiate communication. In addition, minimally or non-speaking students are generally accompanied by a communication partner. The communication partner assists the student with interacting and responding to others inside and outside of the classroom—typically via a speech generating device or letter board. The communication partner is akin to an American Sign Language interpreter for the deaf and hard of hearing. Always speak directly to the student, allowing him/her/hir/their time to respond while they point to letters or icons to construct their comments and responses. Student affairs should continue to work collaboratively with the campus disability office to maintain a supportive and responsive campus experience that involves the student with autism in meaningful ways.

Closing Thoughts
Although it is acknowledged that experiences of students with autism at the post-secondary level have been understudied, student affairs professionals can cultivate knowledge and practices to frame a supportive culture. Research indicates that strong higher education supports have significantly increased enrollment of students with autism in postsecondary education. And that is good news for our communities. Students with ASD bring to the table many qualities that positively benefit the higher education environment. Student affairs professionals may be the best people to highlight those contributions because they are recognized as a good place to start in setting inclusive campus climate.
Of all the constituencies on college campuses, student affairs, by virtue of its historical commitment to differences and the espoused values of the profession, has assumed leadership for creating learning environment that are inclusive, diverse and affirming. In doing so, values of human dignity, equality, and community serve as an appropriate framework for working with students. (Hall & Belch, 2000, p. 9)
When those values are extended to students with autism including those who are minimally or non-speaking, student affairs professionals will model for others the kind of welcoming campuses that make up vibrant learning communities. As Samuel Capozzi (2015) states, we want “to move from mere awareness to appreciation for the unique gifts and abilities of those on the autism spectrum” (para. 3).

Reflection Questions:

1) In your role, what professional development do you think that you would need to be able to support a student with ASD who types to communicate?
2) Based on your personal life experience, what assumptions or perspectives do you bring with you that might be a barrier to working with a student with ASD and what can you do to overcome those barriers?
3) What could your institution do to be more inclusive and accepting of students with ASD?
4) What collaborations and networks with programs or individuals might you develop or strengthen to support minimally or non-speaking students with ASD?

References

  • Ashby, C. E., & Causton-Theoharis, J. (2012). “Moving quietly through the door of opportunity”:
    Perspectives of college students who type to communicate. Equity & Excellence in
    Education, 45(2), 261-282. doi:10.1080/10665684.2012.666939
  • Capozzi, S. (2016, March 19).  Words from a college student with autism [Web log post].  Retrieved from http://idoinautismland.com/?p=430
  • Capozzi, S. (2015). Acceptance Speech to the Ventura County Autism Society. Retrieved from http://www.joniandfriends.org/blog/samuel-honored/.
  • Centers for Disease Control and Prevention. (2016, March 31). Retrieved from http://www.cdc.gov/ncbddd/autism/data.html
  • Davis, L. J. (2011). Why is disability missing from the discourse on diversity? Chronicle of Higher Education, 58(6), B38-B40. Retrieved from http://chronicle.com.ezproxy.callutheran.edu/article/Why-Is-Disability-Missing-From/129088
  • Hall, L., & Belch, H. (2000). Setting the context: Reconsidering the principles of full participation and meaningful access for students with disabilities. In H. A. Belch (Ed.), Serving students with disabilities, No. 91(1). San Francisco, CA: Jossey-Bass.
  • Kalambouka, A., Farrell, P., Dyson, A., & Kaplan, I. (2007). The impact of placing pupils with special educational needs in mainstream schools on the achievement of their peers. Educational Research, 49(4), 365-382. doi:10.1080/00131880701717222
  • Kurth, J. A. (2015). Educational placement of students with autism. Focus On Autism & Other Developmental Disabilities, 30(4), 249-256. doi:10.1177/1088357614547891
  • Matthews, N., Ly, A., & Goldberg, W. (2015). College students’ perceptions of peers with autism spectrum disorder. Journal of Autism & Developmental Disorders, 45(1), 90-99. doi:10.1007/s10803-014-2195-6
  • Myers, J., Ladner, J., & Koger, S. (2011). More than a passing grade: fostering positive psychological outcomes for mainstreamed students with autism. Journal of Developmental & Physical Disabilities, 23(6), 515-526. doi:10.1007/s10882-011-9242-4
  • National Autism Association. (2016). Retrieved from http://nationalautismassociation.org/resources/autism-fact-sheet/
  • National Institutes of Health (2010). Workshop on nonverbal school-aged children with autism. Retrieved from https://www.nidcd.nih.gov/workshops/nonverbal-school-aged-children-autism/2010/summary
  • Pinder-Amaker, S. (2014). Identifying the unmet needs of college students on the autism spectrum. Harvard Review of Psychiatry, 22(2), 125-137.
  • Raue, K., & Lewis, L. (2011). Students with disabilities at degree-granting postsecondary institutions: First look. NCES 2011-018. National Center for Education Statistics. Retrieved from http://www.eric.ed.gov/ERICWebPortal/detail?accno=ED520976
  • Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., Edwards, A. D., Wei, X., McCracken, M. & Yu, J. W. (2015). Characteristics of two-year college students on the autism spectrum and their support services experiences. Autism Research & Treatment, 1-10. doi:10.1155/2015/391693
  • Shattuck, P., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, & M., Taylor, J. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6): 1-8.
  • United States Autism and Asperger Association. (2013). About US college autism project (USCAP). Retrieved from http://www.usautism.org/uscap/index.htm
  • VanBergeijk, E., Klin, A., & Volkmar, F. (2008). Supporting more able students on the autism spectrum: College and beyond. Journal of Autism & Developmental Disorders, 38(7), 1359-1370. doi:10.1007/s10803-007-0524-8

About the Authors
Beth Brennan earned her Ph.D. in Special Education in 1997 from Kent State University. Dr. Brennan joined the California Lutheran University faculty in 2011 as an Associate Professor. She currently serves as Associate Dean and Director of Special Education Programs in the Graduate School of Education. Dr. Brennan has worked in supervision and research at Family Child Learning Center in Ohio (a collaborative of Kent State University and Akron Children’s Hospital), as a site coordinator (San Francisco State University) with the Early Childhood Research Institute on Inclusion, and as the Special Education Program Director at Saint Mary’s College of California. Dr. Brennan is a Founding Co-Director of the Autism and Communication Center at California Lutheran University.

Please e-mail inquiries to Beth Brennan.

Edlyn Peña earned her Ph.D. in Education with a concentration in Higher Education in 2007 from the University of Southern California (USC).  After teaching graduate level courses at USC for several years, Dr. Peña joined the California Lutheran University (CLU) faculty in 2009. As an Associate Professor in Higher Education Leadership at CLU, her research currently focuses on social justice issues for students with disabilities, particularly autism, in the preschool through higher education pipeline. Dr. Peña is a Founding Co-Director of the Autism and Communication Center at California Lutheran University.

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.