Disability Studies Quarterly Fall 2008, Volume 28, No.4 <www.dsq-sds.org> Copyright 2008 by the Society for Disability Studies

Autistic Acceptance and Neurodiversity: A Movement Emerges

The history of the disability rights movement contains many legendary stories of empowered people with disabilities taking control of their political, social, and legal representations from people without disabilities who sought to speak for them (Shapiro, 1994). The motto of the disability rights movement, "Nothing About Us Without Us," symbolizes the spirit of these organized efforts by disability self-advocates and their allies. Several decades ago, the autistic rights and neurodiversity movements sought to capture this fortitude for their own pursuit of empowerment.

Prior to the rise of the autistic rights movements, parent and professional accounts of autistic people determined most public representations of autism. Indirect accounts of autistic people's experiences sometimes shaped distorting metaphors that patronized, dehumanized, and demeaned autistic people. Some of these metaphors even portrayed autistic people as having a stolen or kidnapped personhood. This malevolent misrepresentation led those charged with supporting autistic people to question the very value of lives with autism. (Ne'eman, 2007a).

In an effort to move away from this plight, a few influential autistic authors and speakers sought to define life as autistic people through their own perspectives. Although they achieved some success in conveying personal stories, their efforts were often constrained by the guidelines and rules of autism organizations run by professionals and parents. Other autistic people made attempts at self-representation, but their reluctance to couch their efforts on terms outlined by professionals and parents often incited animosity and hostility by parent and professional organizations. This opposition was representative of a long history of resistance to attempts at self-advocacy and self-determination by people with disabilities; indeed, blind people, deaf people, people with developmental disabilities, and many other disability populations have all experienced opposition to their self-advocacy efforts.

In this setting, a unified autistic self-advocacy community emerged (Dekker, 1999; Sinclair, 2005). Jim Sinclair, a pioneer of this autistic self-advocacy community, described how early collaboration among its members transpired primarily through pen-pal lists and autism conferences. When autistic self-advocates met each other at these gatherings, similarities among their shared experiences and life stories quickly became apparent. After chatting in-person with fellow autistic self-advocate Donna Williams, Sinclair described "a feeling that, after a life spent among aliens, I had met someone who came from the same planet as me" (Sinclair, 2005). He later recalled how this feeling of solidarity characterized a subsequent meeting between himself, Williams, and Kathy Grant (another autistic person):

We spent two or three days together, in a place where everyone was autistic, and where there were only three of us instead of a large crowd. We were all somewhat familiar with each other through our written correspondence; Kathy and I had also met briefly in person at a conference or two. The combination of these factors produced a new kind of autistic encounter that was vastly different from meeting other autistic people at NT (non-autistic) conferences.

Sinclair, Williams, and Grant mutually expressed intentions to expand from small group collaboration to a larger autistic-run organization. This resulted in their founding of Autism Network International, the first autistic self-advocacy organization run by and for autistic people.

Expanding public access to the Internet further catalyzed the growth of the autistic self-advocacy community. Internet communication technologies liberated autistic people from the constraints of in-person communication, which can be highly fatiguing and sometimes overwhelming for them. Internet-based communication also enabled autistic people to develop their own autistic-run communities on email lists, forums, and other online platforms where they could often express themselves more easily than in-person. (Sinclair, 2005).

In the last decade, autistic-run online communities have matured into a broader, diverse mélange of autistic-run websites, forums, email lists, and gatherings on interactive platforms (ex. virtual 3D communities, the YouTube video service). Simultaneously, an offline autistic self-advocacy presence has flourished through the creation of regionalized social/support groups and additional autistic-run advocacy and cultural organizations, such as the Autistic Self-Advocacy Network, an international organization founded in 2006.

Oppositional movements organized by autistic run-organizations against dehumanizing and demeaning portrayals of autistic people have further shaped the autistic self-advocacy community's emergence. These oppositional movements fundamentally influenced a growing political and social ideology adopted by millions of autistic people worldwide: the neurodiversity movement. In a 1998 article entitled "Neurodiversity," journalist Harvey Blume (1998) coined the term to describe the neurological diversity of autistic people, dyslexic people, and people with other major differences in cognitive processing.

Since then, an active literature from a diverse group of disciplines has emerged around neurodiversity and the autistic community (Dekker, 1999; Williams, 2005; Ne'eman, 2007a; Ne'eman, 2007b; Osteen, 2007). The philosophical vision of neurodiversity applies essential principles of society's embrace of diversity in ethnicity, nationality, religion, and sexual orientation toward people embodying diverse human neurology. Although autistic people acknowledge great challenges with being autistic, they also recognize that autism presents important strengths, talents, abilities, and gifts, such as comfort with structure and consistency, a knack for repetition, and a detailed, intricate world understanding. Yet, public dialogue about autism often ignores these strengths. Most descriptions of autistic people in the media, research, and the clinical community focus primarily on autistic people's difficulties. This imbalance led to the establishment in 2005 of Autistic Pride Day, an annual celebration of neurodiversity by autistic people that is held on June 18.

Alongside this growth of neurodiversity, online interaction has driven the emergence of an offline autistic disability culture with its own unique artwork, literature, terminology (ex. autie, autistics and cousins, neurotypical), and shared norms and values (Dekker, 1999; Sinclair, 2005; Williams, 2005; Joyner-Hane, Sibley, Shore, Meyer, Schwartz, & Wiley, 2004). The Autism Acceptance Project, a Canadian organization, has fostered many of these cultural expressions worldwide by organizing art shows, galleries, and other events. Since 1996, ANI has organized Autreat, an annual retreat-style conference where autistic people and non-autistic allies gather in a sensory-compatible and socially friendly atmosphere. Participants of the conference wear colored badges (red, green, yellow) that indicate their communication preferences; the different colors convey whether autistic people don't want to be approached (red), only want to be approached by people they know (yellow), or want to be approached by everyone (green). Many of the participants at Autreat give presentations to the community on neurodiversity, self-advocacy, support for daily living, and other important topics (Autism Network International, 2008).

The growth of this autistic disability culture and the maturation of the autistic self-advocacy community have resulted in numerous implications for service delivery for autistic people. Service-delivery professionals (e.g. educators, vocational counselors, therapists, etc.) have started to move away from pursuing normalcy for autistic people and toward enhancing their quality of life and communication access (Ne'eman, 2007b). Jim Sinclair's seminal article, "Don't Mourn For Us" (1993), describes this new mindset as a paradigm shift toward universal acceptance of autistic personhood:

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive. . . .It is not possible to separate the autism from the person — and if it were possible, the person you'd have left would not be the same person you started with.

The path toward universal acceptance of this autistic personhood has involved addressing areas of difficulty for autistic people in the context of their objective characteristics. This shift in mindsets has caused movement away from deficit models of autism and toward difference models of neurodiversity (Wolman, 2008).

College Campuses' Acceptance & Support for Autistic Students

Alongside this emergence and growth of the autistic acceptance and neurodiversity movements, college support for autistic students has increasingly gained a larger focus in the media and among the public. Stories and reports in The New York Times, The Chronicle of Higher Education, and regional newspapers and magazines have highlighted the opportunities higher education presents for autistic people, while also focusing on challenges frequently encountered by autistic college students who are managing the academic, social, and daily living demands of college life (c.f. Farrell, 2004; Moore, 2006; Mohajer, 2006; Erb, 2008).

TV news programs have also started to examine the college experience for autistic students. The ABC-TV news magazine Good Morning America aired a report on World Autism Awareness Day 2008 (April 2) that examined the model college program at Marshall University, a support program organized by the West Virginia Autism Training Center that provides directed guidance on academics, daily living, and social interaction to autistic college students (Tracjtenberg, 2008). The model college program is one of a small number of autism-specific support programs at colleges and universities in the U.S. Other colleges and universities that have launched autism-specific support programs in the last seven years include: Western Kentucky University; Fairleigh Dickson University in New Jersey; the University of Arizona; the University of Alabama; Oakland University in Michigan; and Keene State College in New Hampshire.

Rising attendance of autistic students in colleges and universities has contributed to both the emergence of these autism-specific support programs and expanded media attention to college life for autistic students. Accurate numerical measures to describe the attendance of autistic students at colleges and universities across the U.S. remain unavailable due to a lack of sufficient quantitative studies and surveys about autistic students and college life. However, anecdotal accounts by disability student services offices, parents, college administrators, and course instructors indicate increasing attendance by autistic college students over the last 15 years (Taylor, 2005; Adreon & Durocher, 2007; Graetz & Smampinato, 2008; VanBergeijk, Klin, & Volkmar, in press).

An increase in the attendance of autistic students at colleges and universities would logically follow from the rise in autism diagnoses seen across students enrolled in K-12 and among the adult population in the last 14 years since the publication of the DSM IV in 1994. (Published by the American Psychiatric Association and adopted by the American Psychological Association, the DSM provides standardized diagnostic definitions of autism and other disabilities for use by clinicians and researchers. Controversies surrounding the DSM's current diagnostic criteria for autism and its confusing partition of autism into five diagnostic groups may prompt a major reworking of the autism diagnostic criteria when the book's next revision is released in 2011 or 2012.) Numerous factors contributed to this rise in autism diagnoses, including expanded definitions of autism, shifts in societal understanding of autistic people, more accurate methodology for counting autistic people, and better access and availability of accurate information about autism. As a result, many students diagnosed as autistic in primary and secondary school in the 1990s and 2000s, who might not previously have been diagnosed as autistic, are now pursuing their undergraduate and graduate studies.

These autistic college students require support for both academic and non-academic aspects of the college experience throughout their years in higher education. Adoption of specific services, accommodations, and support resources for autistic college students largely depends on their individual strengths, challenges, preferences, and needs because a large variation exists among autistic people; this variation is representative of the large number of differences seen across diverse population groups in society. However, several common challenges often present major obstacles for autistic people pursuing their college studies. These challenges are addressed in the following section.

Supporting and Accommodating Challenges in Higher Education

One widespread challenge for autistic college students is a difficulty managing tasks that place a high emphasis on executive functioning, which is cognition that involves complex goal-oriented and reflexive thinking. Autistic college students may require assistance with planning, organizing, prioritizing, and scheduling their college course work, extracurricular activities, and other pursuits. Tools specifically designed to assist planning and organization (e.g. day-planners, calendars, tasks lists, organizers, checklists, outlines, concept mappings, charts, sticky notes, etc.) may be very beneficial for enhancing autistic college students' executive functioning.

Technological solutions can also support autistic college students' executive functioning. Many studies have found that the logical and systematic aspects of computers and other information technologies (ex. personal digital assistants, electronic organizers, smart phones, calculators, etc.) strongly appeal to the cognitive processing strengths in rule-based, logical, and systematic thinking possessed by many autistic people (Moore & Taylor, 2000; Moore, McGrath, & Thorpe, 2000; Kaliouby & Robinson, 2005; Ferguson, Myles, & Hagiwara, 2005; Brownlow & O'Dell, 2006; Mitchell, Parsons, & Leonard, 2007; Robertson, 2007). The authors of this paper (who are both autistic) routinely use computers, PDAs, and organizational and planning tools to manage their schedules and workloads.

Information technologies can empower autistic college students in numerous other ways as well. Autistic college students who have handwriting difficulties may find it helpful to type up assignments and exams using word processing software (e.g. Microsoft Word, Open Office, Apple Pages). Design-oriented software applications like Omnigraffle on Mac OS X and Adobe InDesign on the Windows operating system can assist autistic college students' development of course projects. Online communication technologies (ex. instant messaging, threaded forums, email lists, 3D virtual worlds) can provide a comfortable social outlet for many autistic college students who may find in-person social interaction unmanageable. Course instructors could tap this advantage by enabling autistic college students to satisfy class participation requirements by posting and interacting on an online course forum, bulletin board, or virtual world.

The website Wrongplanet.net reflects this advantage of online communication for many autistic people, including those studying at colleges and universities. Wrongplanet.net's 23 discussion forums include a section dedicated to the discussion of school and college life. This section contains thousands of contributed posts about college selection, coursework, campus living, and many other aspects of college experiences. Autistic self-advocates Alex Plank and Dan Grover established Wrongplanet.net in 2004 while in high school; Plank and Grover are currently college students at George Mason University and Northeastern University. In a four-year time span, Wrongplanet.net's membership has grown from a few hundred users to more than 21,000 users. Wrongplanet.net's users have contributed nearly 1.7 million posts to the website's forums (as of September 2008); most of these users are autistic adults, adolescents, and children from the U.S. and other countries worldwide. (Wrongplanet.net requires that young children be supervised by their parents when browsing and posting on the forums.) (Plank, 2007; Plank, 2008)

AutUniversity, an email list, provides another outlet for autistic people to discuss the challenges, aspirations, and successes of life in college. Founded by autistic self-advocates in the United Kingdom, AutUniversity's membership is restricted to autistic people who are studying in two-year or four-year higher education schools, as well as those who have graduated or are considering attending a college or university. AutUniversity was started as a successor to the popular AutUniv-L email list for autistic people (also run out of the U.K.), which ceased operations in 2007 (Arnold, 2007).

General social networking websites can offer additional social interaction and support opportunities for autistic college students. The college-oriented social networking site Facebook, for instance, hosts many autistic-run and neurodiversity-oriented groups for autistic people (ex. Neurodiversity Advocacy, The Autism Acceptance Project, The Autistic Self-Advocacy Network, Aspie Underground) (Facebook Inc., 2008). Second Life (http://www.secondlife.com), a popular 3D virtual world, has hosted many autistic communities where autistic people can chat about their experiences. These communities have included the 16-acre island Brigadoon, research projects at the University of Texas-Austin and at the University of Derby in the United Kingdom, and virtual worlds created by autistic self-advocates like Amanda Baggs (Loftus, 2005; Brigadoon, 2006; Philips, 2008; Bagnell, 2008; Wolman, 2008; Linden Research Inc., 2008).

While these online and virtual environments can enable autistic people to regulate and control their sensory environment, offline interaction may not. Consequently, sensory demands from physical and social environments can produce another common challenge for autistic college students. Many autistic people process informational input from the five external-directed senses (vision, hearing, smell, taste, touch) and two internal-directed senses (balance, muscular feedback) differently from how non-autistic people process sensory input. Autistic people's senses may be hypersensitive (highly increased in sensitivity) or hyposensitive (highly decreased in sensitivity). The level and nature of sensory sensitivity will vary greatly under different circumstances and in different situations, depending on an autistic person's stress level, emotional state, and surroundings (Gillot & Standen, 2007; Robertson, 2007).

Sensory processing differences can lead autistic college students to feel overwhelmed or overloaded in the college classroom and in other settings at college campuses. Consequently, autistic college students may require adjustments to be made to the physical environment, such as modification of overhead lighting (e.g. dimming or removing fluorescent lights) and room alterations that reduce distracting background noise from other classrooms. Some autistic college students may require compensatory sensory-assistive tools, such as sunglasses to reduce visual glare indoors and headphones that filter out background noise while still permitting the student to listen to conversations.

While these accommodations may be helpful for managing life, autistic college students may still experience overload from their sensory systems at certain times. Course instructors can permit students the option of leaving a college classroom for short or extended breaks to decompress when a period of sensory overload occurs. Instructors can also work with the students to develop compatible sensory accommodations.

An additional challenge that may occur for many autistic college students is the impact of a mental health disability. Many studies have suggested that autistic people may have a much higher rate of depression, generalized anxiety, and social anxiety than non-autistic people due to the high amount of stress from living in a non-autistic world (Stewart, Barnard, Pearson, Hasan, & O'Brien, 2006; Gillot & Standen, 2007). For this reason, many autistic college students would benefit from regularly seeing a counselor or therapist. One of this paper's authors has seen a counselor at his university weekly since 2005; he has found it very helpful for managing the challenges of generalized anxiety, social anxiety, and recurring major depression. However, some autistic college students may feel reluctant to make an appointment with a counselor due to perceived stigma of mental health disabilities, disbelief that they need to seek outside help, and the barrier of initial inertia. Course instructors, advisers, and mentors can help them navigate these obstacles by sharing their own experiences with managing stress and by emphasizing the advantages of seeing a counselor.

Cultivating acceptance and support resources for autistic college students will also involve transforming a campus community's broader culture. Colleges and universities can host gatherings and events focused on learning more about autistic college students and the neurological diversity they contribute to their campus environment. Many colleges and universities have held week-long community gatherings focused on appreciating the diversity of their community's differences in ethnicity, nationality, sexual orientation, and religion. A neurodiversity-focused expansion of these diversity events would integrate activities focused on embracing the diversity of autistic people and other neurodiverse population groups. Neurodiversity-focused events might include film festivals, art galleries, poster sessions, essay writing contests, symposia, and readings of poetry and stories written by autistic people. The organizers of these events could collaborate with organizations that have fostered the growth of the disability culture of autistic people, such as the Autism Acceptance Project, Autism Network International, and the Autistic Self-Advocacy Network.

These organizations often help colleges and universities invite autistic self-advocates to their campus communities to speak to faculty, staff, and students about the major challenges impacting autistic people's lives, as well as resources and approaches for helping them navigate those challenges. Visiting autistic speakers offer the advantage of first-person perspectives that reflect lifelong experiences of daily living in a non-autistic world whose environment may frequently be highly sensory overloading and socially ambiguous. This paper's authors have witnessed how first-person perspectives have greatly enhanced audiences' understanding of autism when they've spoken about autism and neurodiversity at schools, conferences, and organizations throughout the U.S.

A campus community's housing services (commonly known as residence life) and campus residence hall associations can also contribute to enhancing the college experience for autistic college students. They can create training programs for teaching residence assistants (RAs) about challenges impacting autistic college students who live in their dorms and how to support autistic students. Producing a handbook about dorm life and campus living for autistic college students may be particularly helpful for this training program. Housing services can also establish a peer-mentoring program that pairs autistic college students alongside compassionate, empathic peer leaders who can provide guidance, advice, and friendship; many high schools and some higher education institutions have developed mentoring programs for students with disabilities. Another area of support where housing services can provide assistance is flexible room options. Many autistic college students may require a single room with no roommate instead of a double room with a roommate; many colleges and universities currently provide a single room for the cost of a double room as a common disability accommodation for autistic college students.

Student-run community service organizations (ex. Alpha Phi Omega, Best Buddies, Circle K) can also participate in strengthening support for autistic students. They can create instructional programs for teaching strategies and approaches appropriate to autistic college students navigating the campus social environment, learning study skills (and other skills for organization and planning), and managing daily living on the college campus. They can educate members of the campus community about autistic students at their school. Additionally, their leaders can partner with housing services' efforts to establish peer-mentoring programs for autistic college students.

Autistic college students will greatly benefit from expanded services and support resources and increased acceptance for their neurodiversity by college peers, professors, and other members of their school — just as college students who have diverse ethnicities, nationalities, religions, and sexual orientations have benefited from better understanding and support for their differences. The spirit of autistic acceptance on campus should focus on embracing autistic college students' diverse gifts, talents, and abilities, while acknowledging and respecting their autonomy, individuality, and rights and responsibilities. This also means that members of a college campus must strive to empower autistic college students and foster their personal growth, rather than seeking to normalize them.

This paper's authors, who are both autistic, have achieved many accomplishments in academics, daily living, vocational pursuits, and social relationship development; our tenacity and the support of others around us have been integral to this success. At the same time, we have both experienced many periods of depression, high anxiety, and low self-esteem throughout the course of our lives. These strenuous periods often reflected a large disparity between our support needs and the available support resources. Our mutual pursuit of lifelong service and advocacy to the community of autistic people and those who support autistic people reflects a dedicated commitment to paying forward support we've received throughout our lives. We're committed to ensuring that support resources continue to expand to meet the challenges faced by autistic people throughout their lives from birth through childhood, adolescence, and adult life.