College Success for Students on the Autism Spectrum

A Neurodiversity Perspective

S. Jay Kuder, Amy Accardo, John Woodruff

• Verlag: Stylus Publishing
• Jahr: 2021
• ISBN:
  9781642670271
• Thema: Pedagogía
• Thema: Educación superior

Helping both college faculty and student affairs staff enlarge their understanding of the experiences of students on the autism spectrum, this book provides guidance on putting supports in place to increase college success. Uniquely, the authors bring the perspective of neurodiversity to this work. Many individuals on the autism spectrum have been stigmatized by the diagnosis and experience autism as a negative label that brings with it marginalization and barriers through an emphasis on deficits. Autistic self-advocates within the neurodiversity movement are leading the charge to rethinking autism as neurodiversity, and to celebrating autism as central to identity. Neurodiversity is not a theory or a way of being, it is a fact, and neurological diversity should be valued and respected along with any other human variation such as race, ethnicity, gender, and sexuality.The book provides the practical guidance needed to help neurodivergent students succeed, with chapters that address a variety of key issues from the transition to college to career readiness after graduation. The authors address support services, faculty and staff roles, and enhancing academic success. They also cover navigating the social demands of college life, working with families, and mental health. The final chapter brings it all together, describing the elements of a comprehensive program to help this student population succeed.Difficulties with social interaction and communication are one of the defining characteristics of autism and often persist into adulthood. It can be assumed that difficulties with social interaction and communication may also impact college success, both socially and academically. But the answer for these students is not necessarily to try to "fix" these issues, since the fact that these students have been admitted to a degree-granting program shows that they can be successful students. Instead, there should be an emphasis on helping faculty, staff, and students understand the diversity of human behavior while helping autistic students achieve college success through a support system and by providing accommodations and services when needed.

1

NEURODIVERSITY IN HIGHER EDUCATION

College success is basically what you make of it. It’s a scary thing, being on your own and everything. As I am getting older, you kind of see things. For me, it takes me a long time to get used to everything, not because it’s changing, but I never thought that day would actually come. . . . In order to be successful as a college student, you have to be flexible and that’s one thing I sometimes have trouble with. I think that there could probably be a short memoir or book about being successful, but definitely being successful you gotta be flexible. You’re dealing with other people, it’s not like you’re with your family and they could try to fit to your plans; when you go to college it’s basically the start, it’s being in the real world.

—Lucas, a 20-year-old junior on the autism spectrum

Lucas’s perspective of college as the real world is not uncommon to students transitioning from high school to higher education. Lucas’s surprise at his own achievement of success as a college student, however, speaks to the experiences of many autistic young adults and to the motivation behind this book—to help college faculty and student services personnel increase their understanding of the experiences of college students on the autism spectrum and to put supports in place to increase college success for autistic students in postsecondary degree programs.

The New “Traditional” College Student

In order to make an impact on student success as faculty and professionals it is important to consider: How is the population of university students changing? The fact is there is no longer one traditional profile of a college student. Roughly 75% of college students fit into at least one category previously considered nontraditional (Riddell, 2017). These categories include adult learners, first-generation college students, students with learning disabilities, and students who identify as neurodivergent—a category encompassing students on the autism spectrum.

With the increasing prevalence of young adults on the autism spectrum comes an anticipated increase in autistic college students. As university faculty and professional staff you may or may not have professional or personal experience with autism, or identify as autistic yourself. If you have had limited experience with autism, you may be questioning: How is autism diagnosed? What is the prevalence of autism? No matter how much experience you have with autism you may be wondering: What are the legal mandates associated with receiving educational services and supports, such as on college campuses? And how can I make a meaningful impact for college students on the autism spectrum and for all nontraditional learners at my college or university? In this chapter we begin to answer these questions with a focus on understanding autism, neurodiversity, related terminology, and legal mandates. We aim to provide a foundation for understanding autism and for expanding supports for students in your college classrooms and communities.

Of note, throughout this book we use the terms on the autism spectrum and autistic interchangeably to show acceptance of both professional use of person-first language and the preference of autistic self-advocates for identity-first language (see Box 1.1). To further emphasize the importance of language, we provide definitions of key terms in this chapter (see Box 1.2).

Understanding Autism

Autism is commonly defined as a developmental disability characterized by significant deficits in social interaction and/or social communication and by restricted, repetitive patterns of behavior, interests, or activities (American Psychiatric Association [APA], 2013). The 2013 revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) was controversial in that it eliminated several previous types of autism as separate disorders, including Asperger syndrome, and combined them into one category with three levels of severity:

Level 1: Requiring support. Characterized by impairments in social communication when supports are not in place.

Level 2: Requiring substantial support. Characterized by marked deficits in verbal and nonverbal social communication.

Level 3: Requiring very substantial support. Characterized by severe deficits in verbal and nonverbal social communication.

Difficulties with social interaction and communication are one of the defining characteristics of autism and often persist into adulthood. It can be assumed that difficulties with social interaction and communication may also impact college success, both socially and academically. But the answer for these students is not necessarily to try to “fix” these issues. After all, by the very fact that they have been admitted to a degree-granting program, these individuals have already shown that they can be successful students. Instead, there should be an emphasis on helping faculty, staff, and students value the diversity of human minds while helping autistic students achieve college success through a support system and by providing accommodations and services as needed.

Box 1.1
Person-First Versus Identity-First Language

What should we call individuals who have been identified as autistic? For many years professionals who work with individuals with autism have preferred person-first language—for example, person with autism or child with autism or person (or individual) with autism spectrum disorder. There was a widespread belief that the use of the “person first” was important to not define any individual by their disability.

More recently, autistic self-advocates have voiced a preference for identity-first language (e.g., autistic person or autistic college student). Self-advocates have expressed that being autistic is a large part of their identity.

So what should you call an individual with autism? Professional recommendation is to ask a person’s preference.

In a study by Kenney et al. (2016), over 3,000 individuals with autism in the United Kingdom were asked what term they preferred. Although there was a wide variety of responses, the most preferred terms were autism and on the autism spectrum. Some self-advocates have rejected the use of person-first language, such as person with autism, arguing that it denied their identification as autistic. They preferred to use the term autistic person. An excellent resource to learn more about the issues involved in terminology from the perspective of an autistic person is an article entitled “Identity-First Language” that can be found on the Autistic Self-Advocacy website (https://autisticadvocacy.org/about-asan/identity-first-language/).

Throughout this book we use the terms on the autism spectrum and autistic interchangeably to show acceptance of both professional use of person-first language and the preference of autistic self-advocates for identity-first language.

It is no longer news that the prevalence of children identified as autistic continues to increase. In the 1960s the incidence of autism was estimated to be 2–4 in 10,000 births. In the year 2000 the United States Centers for Disease Control estimated the prevalence of autism at 1 in 150 children. By 2016 that ratio had risen to 1 in 54 (CDC, 2020). Recent estimates have placed the number as low as 1 in 40 (Kogan et al., 2018). Although the causes of this increase are not entirely clear, factors such as greater awareness of autism, better diagnostic procedures, and the inclusion of Asperger syndrome on the autism spectrum may be contributing to this increase.

Box 1.2
Key Terms Surrounding Autism

Autism: A developmental disability characterized by deficit in social interaction and social communication and by restricted, repetitive patterns of behavior, interests, or activities (APA, 2013); often synonymous with the terms on the autism spectrum and autistic.

Identity-first language: Preferred language use by many autistic self-advocates who consider being autistic as a large part of their identity; usage example: I’m an autistic self-advocate.

Neurodivergent: Refers to a person with a brain that functions differently from the societal standard (individuals are neurodivergent); usage example: The neurodivergent student excels in creative thinking.

Neurodiverse: Refers to a group in which members have a variety of brain differences (groups are neurodiverse); usage example: We have a neurodiverse student population.

Neurodiversity: The diversity of human brains that is a natural human variation; usage example: We recognize the neurodiversity of our student population.

Neurotypical: Refers to a person with a brain that functions in alignment with the societal standard (the opposite of neurodivergent); usage example: The neurotypical students may also benefit from a choice of assignments.

Nonautistic: Refers to a person not characterized by deficit in social interaction and social communication, or by restricted, repetitive patterns of behavior, interests, or activities (the opposite of autistic); usage example: The nonautistic students may also benefit from a choice of assignments.

Person-first language: Preferred language of many nonautistic professionals striving to not define any individual by their disability; usage example: the student on the autism spectrum.

Note. For more information on language usage, autistic scholar Nick Walker (2014) hosts an informative website (https://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/).

Changes in the prevalence of the identification of autism are reflected in data for special education as well. In the year 2000 the number of school-age children on the autism spectrum was 93,000 (1.5% of the total special education population). In the 2017–2018 school year that number had increased to 710,000 (10.2% of the special education population). Of that number, more than 290,000 were ages 14–21 (U.S. Department of Education, 2018). Most of these students complete high school. The National Center for Education Statistics (Hinz et al., 2017) reported that in 2013 more than 86% of autistic students completed high school within 4 years. Many of those secondary students have gone on to college.

Rethinking Autism

Many individuals on the autism spectrum have been stigmatized by the diagnosis and experience autism as a negative label that brings with it marginalization and barriers through an emphasis on deficits. Autistic self-advocates within the neurodiversity movement are leading the charge to rethinking autism as neurodiversity (e.g., see Kapp et al., 2013) and to celebrating autism as central to identity. The shift to rethinking autism will ultimately result in autistic individuals feeling pride in all aspects of their identity, including the differences that result in a diagnostic autism spectrum disorder label.

Neurodiversity

As a basic definition, neurodiversity refers to the diversity of human brains and to recognizing brain differences as natural human variation. Neurodiversity is not a theory or a way of thinking; it is a fact, and neurological diversity should be valued and respected along with any other human variation such as race, ethnicity, gender, and sexuality. Neurodiversity is not exclusionary and includes individuals with a vast range of differences—in other words, anyone with a natural brain variation. Neurodiversity commonly encompasses individuals who are labeled with attention deficit hyperactivity disorder (ADHD), autism, dyslexia, dyspraxia, dyscalculia, and Tourette’s syndrome, as well as those individuals who have a hearing, vision, or psychiatric disability such as anxiety or bipolar disorder.

The Neurodiversity Movement

The neurodiversity movement began with the autism rights movement (for more information on the autism rights movement, see Solomon, 2008), and the term neurodiversity was coined by autistic self-advocate Judy Singer in the late 1990s (Singer, 1999). The neurodiversity movement is “a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent” (Walker, 2014). By recognizing neurodiversity as a valuable form of human diversity, autism is viewed as one of many variants of the genetic makeup of humans, and college students on the autism spectrum who may have invisible disabilities are recognized as equally entitled to full societal inclusion through, for example, the removal of barriers and the addition of accommodations and support services on college campuses. The neurodiversity movement applies the same idea of removing barriers that disable people with physical impairments (e.g., removing steps and installing ramps and curb cuts) to people with brain differences. The neurodiversity movement also warrants (re)consideration of university policies and procedures that may inadvertently disable students. For example, a policy that all online courses have timed quizzes disables students who require more processing time; likewise, a procedure in which students must disclose a disability label and provide an accommodations letter to faculty in order to get a copy of class notes may be an unnecessary barrier, as shown by faculty who instead routinely offer a copy of class notes for all students in their courses as an accessible weekly option.

Neurodiversity Paradigm

Neurodiversity is not the same as the neurodiversity paradigm. Although neurodiversity is a fact, the neurodiversity paradigm provides a philosophical perspective for social justice activism in which we stress that there is not one “normal” type of brain (Walker, 2014). Through a neurodiversity paradigm, all neurological diversity is viewed as natural and planned for proactively. Disabilities are understood “through a lens that filters out social prejudice and language used in deficit models” (Rigler et al., 2015, p. 41). Although individuals may have co-occurring impairments that are the focus of educational supports and instruction, neurodiversity itself is highly valued.

Models of Disability

Consideration of two models of disability, the medical model and the social model, helps to situate self-reflection on how individuals who are neurodivergent are perceived in inclusive settings, including the community and on our college campuses (for an overview of models of disability, see Retief & Letšosa, 2018). The models also reinforce the importance of taking on a strengths-based perspective to disability and to considering (and reconsidering) university policies, systems, and classroom procedures that can turn impairments into disabilities. For example, a college student labeled with ADHD or autism who learns best through hands-on activities may be highly successful in an active science lab environment, but may nee...