Embracing Neurodiversity in Higher Education: Using Transformative Educational Practices to

Overcome Attitudinal Barriers for Individuals with Autism

Karen DeYoung

An Inquiry Project Submitted to the

MAED Program for Experienced Educators Center for Programs in Education

Antioch University Seattle

December 10, 2013

Ed Mikel, PhD Core Faculty College of Education

In Partial Fulfillment of the Requirements for the Degree ofMaster of Arts in Education

Table of ContentsAcknowledgements ........................................................................................................................ 3

Abstract ........................................................................................................................................... 4

Introduction/Statement of Focus .................................................................................................. 5

Rationale ......................................................................................................................................... 5

Review of the Literature ................................................................................................................ 6

Student Voices ................................................................................................................................. 7

Disability Studies and Neurodiversity .......................................................................................... 9

Finding Solutions ........................................................................................................................... 9

Theoretical Perspective ............................................................................................................... 10

Statement of Bias .......................................................................................................................... 10

Methodology ................................................................................................................................. 11

Participants .................................................................................................................................. 11

Instrumentation ............................................................................................................................ 11

Findings & Analysis ..................................................................................................................... 12

Introduction ................................................................................................................................ 12

Initial Survey of Workshop Participants ..................................................................................... 13

Summary of Initial Survey .......................................................................................................... 13

Transcribed Workshop Small Group Discussions ....................................................................... 13

Summary of Small Group Discussions ........................................................................................ 14

Discussion ...................................................................................................................................... 15

References ..................................................................................................................................... 16

Acknowledgements

I would like to acknowledge the support of several faculty members at Antioch University,

Seattle, who have been so very helpful to me as I developed the seminar/workshop and wrote my

thesis paper. Without the depth and breadth of the core curriculum of the Masters of Arts in

Education/Experienced Educators program I would not have so readily developed the

perspective that I hope comes across in this paper. For that I am extremely grateful. I would

also like to acknowledge the wonderful contributions made by the autistic students who were

willing to share their experiences in higher education with me and with a wider audience through

the video of student interviews that was created as part of the seminar/workshop. Finally, I

would like to express my appreciation to my family; my husband and my two sons who each, in

their own way, contributed something uniquely valuable to this final Inquiry Project, with a

special thanks to my youngest son Zane, who contributed many, many hours helping to edit the

student interviews and who was instrumental in producing the final film.

Abstract

Neurodiverse students face multiple barriers to access and success in higher education settings. Individual attitudes, perspectives and knowledge are at the root of these barriers which include structural and systemic barriers created when there is a lack of awareness and/or acceptance of difference. Faculty, staff, service providers and administrators have varying roles to fulfill within the educational setting. All roles are instrumental in creating an environment which can either support or undermine neurodiverse students opportunity to participate in and benefit from the college experience along with their neurotypical peers. This project has demonstrated that participation by faculty, staff, and students in an interactive seminar/workshop can raise awareness of the unique strengths and challenges face by neurodiverse students in higher education. In turn, this experience should be one way that participants come to see the need and the possibilities to create a better academic and social environment for neurodiverse students and enhanced interactions with them by faculty, staff and other students alike.

Introduction/Statement of Focus

This Inquiry Project examined college faculty and staff attitudes, perceptions, and

experiences of neurodiverse students with autism. I hoped to bring into focus currently held

belief systems that may unknowingly be perpetuating marginalization of particular students. The

questions this project asked were: How can attitudes held by faculty, staff and service providers

create barriers or avenues to success for college students with autism and can raising/expanding

awareness of attitudinal barriers create shifts in understanding and perspectives on the part of

those individuals who interact with neurodiverse students in the classroom and on campus?

Through the vehicle of an interactive workshop I hoped to raise awareness of the unique

challenges neurodiverse college students face. By creating opportunities for critical self-

examination, shared discourse, personal narratives of neurodiverse individuals, and exposure to

current critical disability studies research in a supportive, collaborative environment, my goal

was to foster meaningful change in faculty and staffs interactions with neurodiverse students in

higher education.

Transformative learning is a way to create authentic and fundamental change: change that

empowers individuals and groups of individuals, through a process of critical reflection and

action, to become more aware of individual ...habits of mind and points of view (Moore, 2005,

p. 82). With deeper awareness of self, comes recognition of individual differences in perspective

and experience in others. As our society grows more diverse, we are challenged to become more

aware of how dominant cultural, social, political and educational systems may or may not be

meeting the needs of all our citizens. One area relatively new to discourses on multiculturalism,

pluralism and diversity is the broad domain of disability.

There is a growing research body in the field of critical Disability Studies that seeks to

validate the experiences of individuals with disabilities as they interact with the structures and

systems that exist in our society (Barnes, 2007; Beardon, Martin & Woolsey, 2009; Bertilsdotter-

Rosqvist, 2012; Chown & Beaven, 2012; Connor, 2013; Hastwell, Martin, Baron-Cohen &

Harding, 2012; Madriaga, 2010; Madriaga & Goodley, 2010; Mathews, 2009). This critical

perspective exemplifies transformative education in that it decenters normative thinking with

regards to the human experience, viewing disability as a product of society and environment

rather than a product of individual deficit or impairment; often referred to as a social model

of disability(Barnes, 2007, p.135).

Thomas Armstrong (2010) in his book, The Power of Neurodiversity describes

neurodiversity this way: Just as we use the terms cultural diversity and biodiversity to refer

to the rich variety of social heritage or biological life, we need a term that conveys a sense of the

richness of different kinds of brains (p.x). The broad definition of neurodiversity includes

individuals with specific learning disabilities (SLD), Attention Deficit Disorder (ADD), Anxiety

Disorders, Autism, Aspergers Syndrome, Tourettes syndrome and other neurodevelopmental

differences and is used as an empowering alternative to medical labels which describe and

attribute deficiencies rather than differences in brain development. For the purposes of this

project, my use of the term neurodiverse students is specific to students with Autism Spectrum

Conditions (ASC) or Aspergers Syndrome (AS) (Armstrong, 2010).

Rationale This Inquiry Project was an outgrowth of my journey as parent, professional and student

with applications that I believe have the potential to empower great transformation in the lives of

individuals with disabilities, their families, and society at large. I have a son with autism. I also

have a son who fits the criteria for being neurotypical. Witnessing the process of learning

through their eyes and getting to know their individual sensory experiences, their unique

intelligences has opened a window to the immense diversity of human experience and learning.

Parenting these two lovely and profoundly different boys led to my initial work in the field of

early childhood special education. As they matured and I observed their interactions with the

world beyond their supportive, nurturing home environment, my research interests shifted to the

challenges facing neurodiverse individuals who are on the cusp of adulthood. They too, just as

their neurotypical peers, have dreams and aspirations; yet there are structural, social, cultural and

environmental barriers that neurodiverse individuals and their families must confront on a daily

basis. Raising a child whose very being contradicts many of the normative assumptions of

human development disrupted my vision of parenting and impacted all other relationships in my

life. It challenged my identity as a mother, my relationship with my husband, my friendships,

extended family as well as my interactions with educational communities in which our family

participated.

From a very young age, our oldest son Cody (who was diagnosed with High Functioning

Autism at age 20) was a curious, intelligent and focused child whose verbal and intellectual

capabilities surpassed those of his peers and way beyond. At age two he was spending hours

outdoors with me as I gardened. We examined every creature we found in the yard and in the

soil. His fascination with the flora and fauna of our backyard was boundless. If he wasnt

interested in playing with other children it was because observing the creatures in our backyard

pond or walking down the street to spend hours observing the bustling activity of a Western

Thatching Ant nest was infinitely more enthralling. By the time he was reading independently

around six or seven years of age, he knew more than most adults about what was living in the

soil, under the rocks, under the bark, in the tree tops and in the water.

Cody grew up in an environment that made him feel alive, engaged and embraced. Within

the nurturing and supportive environment of our home, our son was able to explore and develop

his true capabilities. His education grew out of his interests and strengths, and he proceeded at

his own pace at home. Opportunities to interact with a wider community were through venues

that supported his interests and gifts. As a result, his interactions with others outside of his

family were by in large, positive and supportive, as he was able to present himself as uniquely

capable and competent.

From time to time my husband and I would falter in our determination to support our

sons unique path. Fearful that we were depriving him of the opportunity to develop normal

peer relationships and learn how to be in a classroom environment, which is what our current

societal schema presents to us as necessary, we would enroll him in public school. Each time

we did so, we were shown a vision of our son through the narrow and biased lens of an education

system that did not recognize or encourage diversity of learning, diversity of interests, diversity

of development. The image they showed us was of a withdrawn, unresponsive boy who was

picked on and bullied by peers, unable to follow instructions, unable to complete school work as

assigned and in need of educational intervention. Yet at home, our son was reading college level

books on natural history, entomology, paleontology, invertebrate and vertebrate biology and

conversing competently way beyond his age/grade level. Hours in a day were spent drawing

beautifully detailed and accurate depictions of the natural world. He eagerly learned about and

embraced his fathers Scandinavian cultural heritage and love of Norse Mythology, enjoyed

family celebrations and traditions, participated in our familys small home-based businesses,

participated in community events and helped out at home. In his home environment he was

thriving, in various school environments he was stigmatized and marginalized by peers and

teachers alike.

The contrast in Codys identities was staggering and begs the question: How many other

families and children have been deprived of the opportunity to thrive in an environment that

celebrates and nurtures individual strengths instead of withering under socially constructed

deficits? Similar feelings of depersonalized identities brought on by exposure to institutionalized

structures and systems were expressed by this parent:

When I first met Kim he was my son. A year later he was epileptic and

developmentally delayed. At eighteen months he had special needs and he

was a special child. He had a mild to moderate learning difficulty. He was

mentally handicapped At nine he came out of segregated schooling and

he slowly became my son again. Never again will he be anything else but

Kima son, a brother, a friend, a pupil, a teacher, a person. (Murray,

1996, in Murray & Penman, 1996, as cited in Goodley, 2010, p.221).

We found ourselves confronted with making a choice between viewing our son as a brilliant,

unique individual with tremendous passions and many focused interests, or a disabled child in

need of intense educational interventions. We chose the former; how could we not?

What is gratifying to me is to realize that in making that choice, my family and I were

embracing the essence of de-centering the norm, and re-centering our sons growth and

development as the norm. We rejected what socio-cultural expectations wanted us to hold up as

a standard of comparison because that standard created a version of our child which was untrue.

We made this choice not because we were well versed in critical disability studies research or

understood the difference between a social model of disability and the medical model of

disability, but because it felt natural and right. Choosing to continue to love and validate our

son for who he was allowed us to set aright the container holding our family system that had

been jarred by contact with a rigid education system.

Now, I fast forward to college, where Cody had an array of academic/career choices;

music, drama or art, biology, zoology, anthropology or paleontology? Eager for the chance to

engage in academically stimulating conversations about meaningful topics, the ability to take

classes in areas that were of interest and would help his reach his career goals, our son enrolled

at community college. The placement tests held no surprises, placing him in a remedial math

class. That had been the one academic area that had always proved difficult. Like many

typically developing young adults our son experimented with classes, switched campuses and

majors, took time off to travel and eventually received his General Studies Associates Degree.

Along the way he began to develop a heightened sense of anxiety, depression, anger and

frustration. Through many lengthy conversations we were able to identify that for him, the lack

of intellectual depth and narrowness of curriculum and instruction in the majority of his classes,

focus on group activities rather than individual learning, impersonal nature of the

instructor/student relationships, lack of quiet places to study and his overwhelmed sensory

system all were converging to create disequilibrium. At the time, we thought these were

challenges unique to our son, and had no idea that his experiences, sadly, were part of a

continuum of similar struggles experienced by other neurodiverse students on college campuses

(Hart, Griegel & Weir, 2010; Madriaga, 2010; VanBergeijk, Klin & Volkmar, 2008).

Nevertheless, Cody continued with his education, choosing to pursue Entomology as his career

goal. This would entail him attending a university distant enough to require him to live away

from home.

By this time, having worked for several years with young children with sensory

processing differences, autism and other neurodevelopmental differences, and having recently

taken classes in special education as returning undergraduate myself, I was aware that Cody

shared many of the characteristics of Aspergers Syndrome both as a young child and as an adult.

I knew that living in a dormitory situation was going to be problematic and not having a familiar

place to come home to at the end of a stressful day of classes would be difficult. I spoke to one

of my professors who advised us to have our son evaluated by a professional so that he could

take advantage of the supports and services provided specifically for students with disabilities,

including the potential to ask for a private room. This we did, with the result being that our son

was officially diagnosed with High Functioning Autism (which they differentiated from

Aspergers Syndrome due to symptoms being present before age 3, according to the Diagnostic

and Statistical Manual, 4th edition (DSM IV) as well as a significant math disability

(Dyscalculia). In addition, he was described as twice exceptional: gifted and learning disabled.

Codys IQ results were both way above the mean (Verbal Comprehension) and way below (Math

Fluency). We now had a common vocabulary that officially identified our son as disabled.

Our son was relieved with the diagnosis. To him, it meant that there was now science

behind what he had always known about himself he was different, here was a scientifically

validated reason why, and nobody could dispute it. As he put it: At least now I know Im not

just some weird guy, I have a real brain difference that makes me the way I am (K. DeYoung,

Personal Communication, 2011). For me, prepared as I was for the professional confirmation of

our sons difference, it still came as a shock. It brought back into living color once again, the

dueling images of my son: Unique vs. Disabled. Nevertheless, we now had the documentation

(paid for out of pocket in the amount of $1,200) that the university was requiring in order to

provide accommodations. Our son requested and was granted, a private dorm room and within a

few short weeks was headed over the mountains to his new school.

My husband and I had met previously with the Disability Service Provider at his

university, to get a sense for what supports and services they offered. We were given generalized

information, but without Codys signature on a waiver they were not permitted to discuss with us

any information that related personally to our son. In contrast with support services in K-12

settings, where public school districts are required to identify and provide Free and Appropriate

Education (FAPE) for children in need of services, access to supports and services in higher

education is provided only after a student self-identifies their disability and provides formal

documentation. This creates an enormous challenge for families of students with disabilities, as

they are not automatically included in the communication loop at colleges and universities. In

fact, unless their child signs a waiver which allows the college to communicate with their

parents, colleges are legally obligated to NOT discuss the student with their parents (ADA, 2008;

FERPA, 2007). Consider the irony of a system which mandates professionally documented

evidence of a disability, and in the case of autism, a disability whose central hallmarks are

challenges with communication, sensory challenges, processing challenges, self-awareness, and

in addition, requires this same individual with the above challenges, to self-identify and self-

advocate in order to access the accommodations he/she is entitled to under the law (OCR, 2011;

ADA, 2008).

The support services that were offered through the Universitys Disability Service Office

were time and a half on quizzes and exams, a quiet room to take exams and access to a note taker

should he need it. These are commonly offered accommodations for many students with

disabilities (OCR, 2011). In addition, through TRiO Student Support Services (TRiO SSS), a

federally supported student support program, he was offered weekly appointments with a support

counselor for the first month. One on one meetings would give him a built-in support system, a

way of checking in with someone who could help with any problems that might come up as he

adjusted to his new environment (Washington State University TRiO SSS).

Like many things in life, good intentions do not necessarily translate into good practice.

Our son struggled to feel comfortable discussing his daily challenges with someone he didnt

know well, and someone who was unfamiliar with the realities of being a person with high

functioning autism. Understaffing in the TRiO office created a situation where phone calls or e-

mails were not answered in a timely fashion, staff turn-over was high and counselors were

changed frequently. The Disability Service Office was separate from the TRiO office, located at

opposite ends of the campus, and our son found it difficult to understand which office provided

which supports. In addition, while accommodations are requested by Disability Service

Providers of the instructors, instructors may or may not comply, may comply inconsistently, may

think they are complying but in fact are not, and the student often finds themselves having to

advocate vigorously for themselves with individuals who are in a position of power over them.

For students who struggle with communication issues, coming from a position of marginalization

and having to continually remind a busy, over worked professor of their accommodation needs

creates a barrier that is next to impossible to overcome (Simmeborn-Fleischer, 2012).

Daily life was a struggle. The dining hall was over-crowded and noisy with many

students waiting in countless lines. Alternative dining areas were spread far across the campus

and required navigating through additional crowds of students that easily overwhelmed our sons

hypersensitive sensory system. His private room was located directly over the ventilation system

for the dining hall that was extremely loud and blew hot, pungent air in through his windows.

Naturally, he chose to keep his windows closed, preferring the stuffiness of a closed room to the

smells and roars of the dining hall ventilation fan. A heavily travelled walkway was located

below his windows as well and students walking past at all hours of the day and night created an

additional layer of auditory overload.

Classes were stressful and lecture halls were crowded, with students regularly talking,

texting and internet surfing, rather than focusing on the lecturer. Our son found this very

distracting and equally frustrating as he was trying hard to absorb the lecture. The library offered

no sanctuary, having no enforced quiet areas of study. Students regularly talked and joked and

tossed garbage at each other. The TRIO SSS office offered some quiet areas, however, as it was

a large campus, there was often not enough time during breaks to get from a classroom to the

TRIO office and then to class again.

An additional challenge was his math disability. Being a science major in todays times

requires that all students, regardless of which branch of science they are working in, take a

standard sequence of chemistry, advanced math, biology and physics, with a heavy emphasis on

math and chemistry. No matter that the career our son was focusing on, Entomology and

Taxonomy, would not require skills in calculus or chemistry. The accommodations provided to a

student with dyscalculia were the same as for any other learning disability whether a student

struggled with reading or writing, receptive or productive language, working memory, processing

time, fluency or comprehension. They were time and a half on tests and quizzes, separate testing

room and a note taker for class.

Tutoring was available. However, tutors tend to be advanced students with no training in

pedagogy, and certainly no training in working with students with disabilities. Inevitably, the

tutoring experience was stressful, anxiety provoking and consequently, unhelpful and

unsuccessful. Math instructors/tutors in our sons experience were the least supportive of his

needs, the least accepting of the fundamental brain differences that create a math disability. Too

many times to mention our son was told that he simply needed to work harder, do more practice

sets, spend more time on drills. At one point our son was being tutored twice a week by a private

math tutor, spending four to six hours a day on math homework in an attempt to pass a

community college introductory calculus class. Having difficulties with working memory, he

would learn the process one problem at a time, with each new problem seeming as unfamiliar to

him as if he had not just done the previous one five minutes earlier. As is common for many

students with specific learning disabilities, our son found it necessary to repeat math and

chemistry classes multiple times, while his grade point suffered (NCD, 2003).

There was one shining bright spot in his day. Through work study, our son was able to

work in the Entomology Museum under the guidance of the Museum Director, organizing and

cataloging their insect collections. Here he thrived; here he felt at home. It was quiet, he worked

independently and it was work he loved. He spent hours far beyond his required work study

hours; evenings, weekends, school holidays. In the museum he discovered what for him felt like

pure joy: intensely focused, detailed work challenging his intellect and nurturing his psyche.

Here he could rejuvenate himself. We were hopeful that this experience would be enough to

counterbalance all the stressors that accompanied each and every day of our sons life at school.

Sadly, we were wrong.

In the early morning hours, the day our son was due home for the Thanksgiving

Holidays, the phone woke us from our sleep. I answered. It was Cody, frantic, hysterical and

clearly out of control. The plan had been for him to take the bus home that day, which would

require getting up early, walking through campus and down the hill towards town and the bus

station. It was dark, it was snowing, and like many young college students, our son had waited

until the last minute to organize and pack himself up for the trip home. Whether it was due to his

autism or just typical youthful underestimation of time and organization, he found himself

hurrying out the door, with an overflowing backpack and an overstuffed suitcase, heavy with

books and papers.

By the time he arrived at the bus station, it was to find the bus overbooked and a long

line of students waiting for a mythical second bus to appear at some unknown time. It was the

perfect storm. The cumulative stress that he had been under all semester, coupled with his

inability to understand, in the moment, why he wasnt on the bus coming home boiled over and

he began yelling and screaming at the bus driver and everyone else while the station manager

called the police. We were extremely fortunate in that the local police had recently received

sensitivity training around student issues, including de-escalating volatile situations. One

officer was able to approach our son with a calm and reassuring presence, leading him away

from the scene and encouraging him to call his parents. It was at this point that we got the

previously mentioned phone call, and within thirty minutes, my husband was on his way, a mere

five hours drive across a mountain pass, in the middle of a heavy snowstorm, to pick up our son.

Exemplifying a great resiliency and strength of character that I attribute to the support of a

dedicated and loving family and a deep connection with his passions, our son did return to school

and finish out the semester, doing well in all his classes except for his calculus class, which he

failed. In the end, despite his wonderful experience in the Entomology Museum, the day-to-day

stressors ultimately outweighed the joy of the museum work and with great reluctance and

disappointment he made the choice not to continue into the next semester.

During this time of anxiety and stress for our entire family, I continued with my studies,

reading current research on issues in post-secondary education for individuals with autism in

theory, and living it daily in reality. Part of my undergraduate research involved creating a

parent discussion group for parents of college age students with neurodevelopmental differences.

The purpose of the group was to empower parents to create necessary change, support each other

as we discover our commonalities and differences, share resources and celebrate our children and

ourselves. Our discussions centered on educational practices in both K-12 and post-secondary

educational systems and included a great deal of personal reflection as to how those systems

impacted our children, ourselves, our families and our communities. Every story told

reverberated through the group and resonated deep within each of us.

In June of 2012, I received my B.A. in Early Childhood/Family Studies from a local

university and began to deliberate whether or not to continue my graduate studies at the same

institution. I had been accepted into the Masters in Early Childhood Special Education program

at my current university or I could create an entirely new pathway for myself at an alternative

university with more opportunity for self direction. Ultimately, I chose the alternative setting as

it would allow me the flexibility to pursue my developing interest in neurodiversity in higher

education; a topic that had been growing more relevant to me as I observed my own sons

experiences with post-secondary educational settings and heard narratives of similar struggles

from parents in the parent group.

It was the right decision. Since beginning at the new institution, I have been exposed to

course work in adult education, social justice, multiculturalism and diversity. As a result I have

been able to make strong connections between emancipatory research, disability studies and

neurodiversity which together create the inspiration and foundation for my thesis.

Review of the Literature

Research shows that since the late 1980s and early 1990s, the number of children with

neurodevelopmental differences has risen dramatically (Newschaffer et.al, 2007). In fact, the

latest statistics from the Centers for Disease Control (CDC) reveal that 1 in 88 children in the

United States have a diagnosis of autism (CDC, 2012). Since the establishment of the

Individuals with Disabilities in Education Act (IDEA), more and more children with disabilities

are participating in mainstream classrooms and are making plans for the future alongside their

peers; plans which include college (Hart, Grigal and Weir, 2010). Many individuals on the

autism spectrum have the intellectual capability to participate in college, often bringing with

them a highly developed, even superior knowledge of particular subjects of interest (Martin,

2006). For these individuals, much of their self-esteem and self-image is based upon their

intellectual capabilities rather than friendships, physical talents and popularity (Camarena &

Sarigiani, 2009). As a result, many college and university campuses are experiencing an increase

in students with autism (Hart, Grigal and Weir, 2010; Hastwell, Martin, Baron-Cohen & Harding,

2012; Simmeborn - Fleischer, 2012).

Despite the cultural norm of growing independence at the end of high school for neuro-

typical young adults, individuals with neurodevelopmental differences often experience delays

and/or restrictions in development, and parents find themselves continuing in a very active role

where other parents are not (Dosa,White and Schuyler, 2007). Many students have difficulty

with expressive communication that makes it hard for them to self-advocate; an expectation that

is assumed in higher education (Hewitt, 2011; VanBergeijk, Klin, & Volkmar, 2008). These

students often struggle with self-awareness, particularly when it comes to assessing their own

strengths and challenges and sometimes have unrealistic goals and careers plans (Janiga &

Costenbader, 2002). Parents (most often mothers) find themselves taking on a more active role

in the transition to college, such as that of service provider and coordinator for their children as

they leave the structured support of Individual Education Plan (IEP) services in high-school

(Taylor & Seltzer, 2010). Martin (2006) addresses this directly, stating:

Family input often plays a crucial role in enabling students with AS to manage at

university University staff have to balance the understanding that a high level of

parental involvement is likely, with respect for the feelings, wishes and aspirations of the

student with AS who may be trying to develop a greater degree of independence (p. 52).

Barriers to access are potentially created when institutions of Higher Education are obligated

under the Family Educational Rights and Privacy Act (FERPA) to insist that the student with the

disability be solely responsible for identifying their needs and requesting accommodations

(OCR, 2011).

For the majority of individuals with disabilities, despite the fact that better supports in K-

12 education have caused a decrease in the number of high school drop-outs and an increase in

students with disabilities graduating from high school with a diploma, according to the National

Council on Disability (NCD), access to post-secondary education remains extremely difficult. In

addition, students with disabilities are less likely to stay in school long enough to receive a

degree, and those that do, often take longer to complete their degrees than students without

disabilities (NCD, 2003).

Since the passage of the Americans with Disabilities Act (ADA) and its subsequent

amendment in 2008 reinforcing the right of individuals with disabilities to be afforded access to

postsecondary education, adult learning settings such as community colleges and universities are

seeing increases in the number of students with disabilities (SWD). These individuals, along

with their families, have worked tremendously hard overcoming personal, institutional and

attitudinal barriers so that they might share in the college experience alongside their peers (ADA,

2008; Petrilla, 2009). Accompanying this demographic shift is the recognition of the support

needs for SWD participating in a variety of post-secondary education settings (MacLeod &

Green, 2009; OCR, 2011; Wolman, McCrink, Rodriguez & Harris-Looby, 2004).

Accommodations in higher education for SWD are fundamentally different from those in

K-12 education. In K-12 settings, served under the Individuals with Disabilities in Education

Act (IDEA), students with disabilities are entitled to Free and Appropriate Public Education

(FAPE), including aids and services and even modification of curriculum if that is determined to

be necessary (IDEA, 2004). Accommodations in higher education under the Americans with

Disabilities Act (ADA, 2008) are offered as aides to overcoming barriers to access [italics my

emphasis] which is substantially different from IDEA mandates. Standard accommodations in

college include such things as such as time and a half for quizzes and exams, having a quiet

room in which to take exams, and note takers. Various forms of assistive technology are now

becoming more available for students with physical impairments (ADA, 2008).

Increasingly, college campuses here in the United States as well as abroad are

experiencing growth in student populations with neurodevelopmental disabilities such as Autism

Spectrum Conditions, Aspergers Syndrome, ADHD, and Specific Learning Disabilities

(dyslexia, dysgraphia, dyscalculia) (Gobbo & Shmulsky, 2012; Griffin & Pollack, 2009; Smith,

2007; Wolf, 2001). While neurodiverse students may benefit from the standard accommodations

offered to all SWDs, their needs often lay outside of traditional academic supports (Hart, Greigal

&Wier, 2010; White, Ollendeck & Bray, 2011).

Unfortunately, there are many attitudinal and institutional barriers to accessing

postsecondary education for young adults with neurodevelopmental differences, not to mention

completing their degree and future employment (Rothman, Maldonado & Rothman, 2008).

Many neurodevelopmental differences are often hidden in that they are not automatically

apparent to those who are unfamiliar with the individual. Faculty, staff and students lack

awareness of the challenges facing these individuals and often respond negatively to their

presence on campus and in college classrooms (Adreon & Durocher, 2007; Camarena &

Sarigiani, 2009; Wolf, 2001). In some cases faculty and staff can be unaware of their legal

obligations under the ADA (ADA, 2008; Eckes & Ochoa, 2005). Attitudes toward disability on

the part of faculty and staff at colleges/universities often reflect a belief that postsecondary

education should remain the exclusive domain of those who meet narrowly defined standards of

educational and intellectual accomplishment (Hart, Grigal and Weir, 2010).

College life presents unique challenges to students with neurodevelopmental differences

(VanBergeijk, Klin, & Volkmar, 2008). The requirement for self-disclosure shifts the

responsibility of accessing appropriate supports from school staff and parents, as is the policy in

secondary education, to the student, who must take the responsibility to self-identify with the

institutions Disability Services Office. Many students are either unaware of their options or

choose not to come forward and self- identify as needing special accommodations (MacLeod &

Green, 2009; Madriaga & Goodley, 2010). For students whose neurological differences result in

challenges in communication and social cognition as well as difficulties with organization,

planning, motivation and self-awareness, lacking awareness of support services and/or choosing

not to use services can place students at risk of school failure (Hewitt, 2011; Taylor & Seltzer,

2010b).

Students who do access student support services often find themselves working with staff

who have not been educated as to the scope of assistance these students need, offering instead a

limited, pre-packaged list of accommodations that falls far short of meeting their needs.

Indeed, many of these students struggle with depression and anxiety in addition to their

neurological differences which stems from living in a world that neither accepts nor

accommodates their differences. Most are constantly coping with confusing and stressful social

interactions with peers, faculty and staff (Adreon and Durocher, 2007; Gobbo & Shmulsky,

2012; Hewitt, 2011; White, Ollendeck & Bray, 2011). Despite the difficulties and challenges

neurodiverse students seem to present in higher education, it is important to keep in mind that

students with autism can perform on a par with their IQ-matched, neurotypical peers and may

be very high-achievers, but only where the learning and teaching environment takes account of

their often conspicuously uneven cognitive profile of strengths and weaknesses (Chown &

Beaven, 2011, p. 481). Martin (2006) reminds us, Celebrating differences and diversity rather

than perceiving people with AS as other, or impaired, is the positive position which is advocated

here (p. 52).

Student Voices

A crucial component of any research that seeks as its outcome the empowerment of

marginalized individuals is the inclusion of the subjects voice. Indeed, it can be argued that

without knowledge of the perspectives, lived experiences, goals and dreams of the individuals at

the center of the research, any conclusion, potential interventions and/or policy recommendations

are subject to question and potentially invalid (Barnes & Mercer, 1997). Madriaga and Goodley

(2010) quote Deal, 2006:

Traditional research has pathologised the individual by focusing on the problematic

nature of AS. We seek [sic] to address this imbalance by placing students with the label

of AS at the centre [sic] of the process. It is they who can best identify enabling and

disabling attitudes and practices found within their university. They are experts in

recognizing barriers within universities that a non-disabled, neuro-typical world

unwittingly take for granted (p. 118).

There are common themes that run through a variety of research articles written in

several different countries including, Sweden, United Kingdom, Mexico and the United States,

reinforcing the universality of neurodiversity and the similar challenges faced by both

individuals with autism and the structures and systems within which those individuals interact.

Common themes include a lack of appropriate accommodations and supports, lack of awareness

of challenges specific to neurodiverse students, and faculty, staff and peers potentially negative

responses to neurodiverse students (Beardon, Martin & Woolsey, 2009; Bertilsdotter-Rosqvist,

2012; Connor, 2013; Simmeborn-Fleischer, 2012; Hastwell, Martin, Baron-Cohen & Harding,

2012; Madriaga, 2010; Wolman, McCrink, Rodriguez & Harris-Looby, 2004).

Based on a review of the current literature (1996-2013), my personal observations of my

sons college experiences, narratives of the parents of college students with autism in my parent

group, including narratives of neurodiverse students I personally interviewed over the course of

conducting this Inquiry Project, the aspects of the college experience that appear to be the most

challenging for neurodiverse students may not be with the academics as much as with the social-

emotional and sensory environments (Barnhill, 2007; Welkowitz & Baker, 2005; K. DeYoung,

Personal Communications, 2012-13). Neurodiverse students challenges in understanding non-

verbal communication such as subtle facial expressions, body language, behavioral norms, their

possibly hyper or hypo sensory systems (auditory, tactile, visual, olfactory, proprioceptive) and

including a slower or faster processing time create atypical social behaviors and responses to

social interactions and physical environments (Madriaga, 2010). As a result, faculty, staff and

peers often respond in ways which aggravate rather than accommodate neurological differences

(Hastwell, Martin, Baron-Cohen & Harding, 2012).

One example of how expectations of normal social behaviors can be problematic for

neurodiverse individuals and whomever they are interacting with is described in Temple

Grandins newest book The Autistic Brain; Thinking Across the Spectrum (Houghton, Mifflin,

Harcourt. 2013). In this instance, Temple Grandin, a well-known autistic self-advocate, scientist

and lecturer, discusses new discoveries in structural brain differences between autistic

individuals and neurotypical individuals (Grandin, 2013). She says,

What a neurotypical feels when someone does make eye contact might be what an

autistic feels when someone doesnt make eye contact. For a person with autism who is

trying to navigate a social situation, welcoming cues from a neurotypical might be

interpreted as aversive cues. Up is down, and down is up. (p.36)

In addition to challenges in their socio/emotional/sensory environments, many students can have

specific learning disabilities that contribute significantly to their struggles (Connor, 2013;

Simmeborn-Fleischer, 2012; K. DeYoung, Personal Communication, 2012-13; Prince-Hughes,

2010).

Neurodiverse students regularly report feelings of isolation, frustration, depression, anger,

anxiety and loneliness. One students narrative described the experience of walking up to an

elevator and seeing everyone go take the stairs or saying hello to a room full of people and

getting nothing back. (Connor, 2013, p.122). Another students comment of a personal

experience stated, I just felt really bad that I was asking so many questions, getting in their way,

annoying them (Beardon, Martin & Woolsey, 2009, p.37). Yet another student stated, People

have to bear in mind that if you have AS you have probably been bullied for most of your life

(Aspect, 2007, as cited in Hastwell, Martin, Baron-Cohen & Harding, 2012, p.59). A quote by a

researcher who self-identifies as Aspergers shares this thought: Trying to survive in social

situations for people with AS is a bit like trying to get upstairs with a broken leg they could just

about crawl themselves up if they were lucky (Madriaga, 2008. As cited in Hastwell, Martin,

Baron-Cohen & Harding, 2012, p. 60). Similar experiences and feelings were expressed during

the interviews I conducted with local neurodiverse college students.

Research on the effects of sensory issues for neurodiverse individuals describe situations

in lecture halls, dining halls, libraries and dorm rooms where sights, sounds, smells, tastes, can

be so overwhelming as to prohibit many students participation in integral college settings. For

example: one individual was quoted as saying I have trouble following lectures in overcrowded

lecture theatres and I cant work in my room if people are loud in the corridor. Another stated,

taste and smell sensitivity cause nutritional issues (Hastwell, Martin, Baron-Cohen & Harding,

2012, p.60). An additional students remark on his particular sensory issues reported, The

student bar, when it is crowded with students, I just cant take it. I get sort of claustrophobia up

thereThere is no where [sic] to sit and there is no space to walkabout (Madriaga, 2010, p. 28).

Dawn Prince-Hughes, a well-known anthropologist, author and former Professor at

Western Washington University in Bellingham, Washington identifies herself as a member of the

autism community. In her book, Aquamarine Blue 5: Personal Stories of College Students with

Autism (Ohio University Press, 2010) she comments, many brilliant students find the

university a formidable mixture of overwhelming sights and sounds, full of change and

disruption, and dependent upon social matrixes that are utterly mystifying. They quit university,

never to return (Prince-Hughes. p. xx). Students who are forced to abandon their academic

careers due to lack of awareness, understanding and support of their differences, creates an

injustice not only for the individual student whose future can be profoundly compromised by

failing to acquire a degree, but for the university community and the world at large. They too are

being deprived of the potential contributions these unique individuals could offer. As Prince-

Hughes says, persons on the higher end of the autistic spectrum may contribute revolutionary

developments within their fields and propel humanity forward in key ways (p. xxiii). She

knows of what she speaks, having gone from being homeless and living on the streets to gaining

a PhD in Anthropology and authoring several books. Her description of her struggles and

challenges in college mirror narratives of other neurodiverse students.

Evidence supporting the lack of awareness and understanding of those teaching and

serving neurodiverse students in higher education is highlighted in a Swedish researchers case

study of three Swedish university students with Aspergers Syndrome (Simmeborn-Fleischer,

2012). Through the use of narrative inquiry, she examines the lived experiences of these

individuals and in particular, examines the students experiences with and perceptions of the

formal educational/disability support system at their university. The students identify struggles

with everyday student life (p. 191) which encompasses aspects outside of academics such as

day-to-day activities, eating, laundry, socializing, spare time, time alone. Simmeborn-Fleischer

(2012) states,

Activities of daily living, for example, paying invoices and doing laundry, seem to

require much more energy for these students than for others. The balance between daily

life and studies therefore becomes disturbed. Tasks that are done routinely by people

without AS become large, overshadowing projects for these students. They simply do

not have enough energy to deal with studies on top of all the activities of daily living.

(p. 188)

A significant finding of the study was the students perception of supports offered by the

university as unhelpful. In fact, the institutional supports and services were perceived as adding

to students stress level and anxiety rather than their intended purpose of alleviating difficulties.

As SimmebornFleischer (2012) observes, Support services are built upon the students own

ability to communicate their particular needs, and when they are [sic] unable to do so, the

support fails (p. 189). She points out that in contrast to normative assumptions regarding student

choice and self-advocacy,

Freedom of choice is in fact no choice for these students: it is just one more complex

issue for them to deal with. If freedom of choice requires that you know your needs and

that you know what support to ask for, then it becomes a catch-22 situation if you cannot

identify your needs and have difficulties knowing what to ask for. (p. 191)

Faculty and Staff Perspectives

In a society that is increasingly culturally diverse the necessity of challenging students

biases and assumptions in order to facilitate a greater awareness and acceptance of difference

should be paramount. The arena of higher education, specifically the traditional liberal arts

education, has been viewed as the setting in which students are exposed to new and diverse ways

of thinking, broadened outlooks encompassing a more global perspective and opportunities to

acquire skills in various areas of interest for future careers. Nussbaum (1997) emphasizes the

nature of education that is liberal in that it liberates the mind from the bondage of habit and

custom, producing people who can function with sensitivity and alertness as citizens of the

whole world (p. 8). I would ask, if we have the expectation that an important component of the

college experience is to foster and celebrate diversity within the student body, should we not

expect the same from faculty, staff and administration alike?

Understanding how higher education faculty and staff view students with disabilities is an

important step towards overcoming barriers for all students with disabilities. Disability

categories in higher education cover a broad spectrum; from visual and hearing impairments to

physical impairments, learning disabilities, psychiatric disabilities, dependency/recovery and

neurological disabilities such as ADHD and Autism and in some cases includes Intellectual

Disability (GAO, 2009). Research shows that faculty/staff responses to SWD can vary based on

the type of disability. Prior knowledge of or experience with a particular disability, whether

personal or professional can also influence attitudes and expectations (Murray, Flannery & Wren,

2008; Murray, Lombardi, Wren & Keys, 2009). In particular, faculty/staff struggle with

understanding and accepting the unique challenges neurodiverse students face in higher

education (Chown & Beaven, 2012; MacLeod & Green, 2009).

The Autistic Self-Advocacy Network (ASAN) published a handbook designed to support

autistic students who are thinking of or already enrolled in college (ASAN, 2011). One

contributor stated,

Barriers take all sorts of forms at universities. Since autism is an invisible disability, it's

not as easy to make clear what you need in order to function properly, compared to a

student with a physical disability which is self-evident. Some people, such as professors,

administrators, and university staff may express doubt about the existence of your

disability. When I came to university, I had a difficult time with some people I was

working with, who doubted that I had the same disability as those kids on TV. This

made for a hostile working environment, because I was unable to convincingly convey

my need to have certain adjustments made for me to be at my top productivity as a

student and work-study. (Navigating College Handbook, p. 33)

Despite faculty self-reports of positive attitudes and expectations towards SWD, there

exists at the same time a different reality for the students, who perceive an unwillingness on the

part of faculty and staff to offer accommodations and negative attitudes towards SWD (Murray,

Lombardi, Wren & Keys, 2009). Informal interviews with faculty at my undergraduate

institution revealed an unfortunate skepticism regarding neurodiverse students capabilities in the

context of higher education coupled with a sense of professional burn out and fatigue. My sons

experience at a number of higher education institutions as well as the experiences shared by

several parents in my parent group whose children had been or were currently enrolled in a

variety of college settings have been similar, coping with skepticism, inconsistency in

implementing accommodations, and lack of understanding on the part of faculty and staff (K.

DeYoung, personal communication, 2012-13).

Current (2013) budget cuts have left programs and staff being asked to do more with less.

On many college campuses student/teacher ratios are large and opportunities to interact

personally with students are rare. Faculty and staff describe themselves as feeling over taxed

meeting current mandates for existing accommodations and may not be receptive to being asked

to provide additional accommodations for yet another type of disability (K. DeYoung, personal

communication, 2012; Scott & Gregg, 2000). These faculty attitudes are particularly troubling

as multiple research articles support the concept that faculty and staff attitudes and expectations

are directly connected to success for SWD (Brockelman, Chadsey & Loeb, 2006; Lombardi &

Murray, 2011; Murray, Lombardi, Wren & Keys, 2009; Scott & Gregg, 2000; Wolman, McCrink,

Rodriguez & Harris-Looby, 2004).

Another facet to the challenges faculty and staff face with growing numbers of SWD in

general and neurodiverse students in particular is the relationship between an institutions faculty

and its disability service providers. Both groups center on students learning but perform

different roles and hold different perspectives. Researchers describe an increasingly

adversarial climate where faculty members feel unheard and left out of the process of

determining the what and how of educational accommodations, and service providers complain

about faculty non-compliance (Scott & Gregg, 2000. p. 159). Ultimately it is the student who

suffers when faculty and staff are at odds with each other. An important role of disability service

providers and staff is to work collaboratively with faculty and administration to ensure that

faculty perspectives are taken into account as the institution strives to meet their legal and ethical

obligations to SWD (Scott & Gregg, 2000).

According to Scott and Gregg (2000), The role of faculty regarding students with LD is

simply to teach and mentor these students, as they would any others (pp. 158-159). However,

as the demographics of student populations change to reflect an increasing diversity of cultures,

socio-economic backgrounds, priorities, learning and brain differences and as higher education

becomes more aware of their obligations and responsibilities to educate such a diverse student

population, faculty may not have the knowledge or the resources they need to teach and

mentor all their students. Disability service providers should work together with faculty to

provide needed resources and supports.

Martin (2006) specifies: The role of HE [higher education] [sic] staff is to embrace the

positive and empower students and not to classify them in a way which may be disabling (p.

52). The role played by higher education staff in contributing to the culture and experience of

students with disabilities is frequently overlooked. Staff in many different capacities have

regular opportunities to interact with students in their roles as advisors, tutors, librarians and

staff, student organization staff, public health. As such it is important to include staff when

assessing overall climate on campuses for students with disabilities (Murray, Flannery & Wren.

2008).

Not all faculty perspectives of neurodiverse students are negative. In a study comparing

attitudes of faculty in the United States and Mexico towards students with disabilities, Wolman,

McCrink, Rodriguez and Harris-Looby (2004) describe a culture of teaching that transcends

specific culturesa psychic world or a common way of thinking shared by all teachers (p.

285). Their findings reveal that in general, faculty in both countries share a willingness to

accommodate SWD but that willingness is positively correlated with professional development.

The authors discuss an academic world that [sic] continues to transcend borders and build

interdependencies among communities of scholars as it relates to SWD (p. 293). They

advocate for the social integration of faculty and students with disabilities (p. 293)

through professional development opportunities, which they feel will facilitate a positive

response to SWD in higher education.

Additional research describes the personal and professional growth that has occurred as a

result of including neurodiverse students in their classrooms. In a paper written by faculty at an

institution of higher education on the East Coast with a history of positive supports for students

with autism, the authors state:

Our strongest argument in favor of continuing support programs for individuals

with AS is not just that we are able to provide an essential and effective service, but

rather the impact it has on us. We have discovered that even when we make limited

progress in helping these students with AS to change, we find that our own attitudes and

behaviors are transformed. Specifically, we have found ourselves to be more

understanding and appreciative of both our differences and similarities, and we regard

students with AS or autism as having a great deal to contribute both to our own learning

and personal growth, as well as to our College community as a whole. Spending time

with and befriending these students is not just about delivering an essential clinical

service, but about what kind of people we want to be and what kind of communities we

want to create. (Welkowitz & Baker, 2005, p. 186)

Scott and Gregg (2000) also include anecdotes of facultys positive experience with SWD. One

faculty member in particular was quoted as saying, attending to the special needs of LD

[learning disabled]students has actually been the primary source of my development as a

teaching professional, and the result has been greater effectiveness as a teacher of persons of all

characteristics (Scheiber & Talpers, 1987. p. 131. As cited in Scott & Gregg, 2000. p. 161).

Disability Studies and Neurodiversity

Critical Disability Studies and the Neurodiversity movement both seek to re-present

disability as a variation on a theme of human experience (to borrow a musical phrase) rather than

an abnormality (Connor, 2013). This perspective welcomes disability under the diversity

umbrella, including in higher education. Barnes (2007) suggests the role of higher education

institutions in the 21st Century is changing along with the very nature of knowledge

production itself (p. 136). Our participation in a market driven and technology dependent world

where information is widely available is changing where knowledge is produced and changing

what kind of knowledge we seek (Barnes, 2007).

Historically, universities were populated by the elite, privileged, and upper classes.

However the focus now is on providing access to students from diverse cultural and economic

backgrounds. Student diversity is now the norm, not the exception (Scott & McGuire, 2005.

As cited in Orr & Hammig, 2009. p. 192). Barnes (2007) further states: The university in the

age of mass education has been a major site for the articulation of democratic and progressive

values, for instance of racial equality, human rights, feminism and social democracy (p. 136).

Recently, those progressive values have begun to include students with disabilities (Delanty,

2001. p. 9. As cited in Barnes, 2007).

The field of Disability Studies is rooted in the relationship between disabled individuals

and the educational academy. The overall goal is to challenge the dominant viewpoint of

disability as existing solely within the individual and re-present disability as a function of

society; a construct that finds its meaning within a social and cultural context (Center on

Human Policy, Law and Disability Studies. n.d.). A commonly used term for this alternative

perspective is the social model of disability (Brownlow, 2010. p. 245) which provides a

counter point to the normative medical model of disability (Madriaga & Goodley, 2010;

Wheeler, 2011).

To date, neurodiverse students experiences in higher education are mostly undescribed

and the research is limited. Much of currently available research approaches neurodiversity via a

deficit or medical model of disability emphasizing individual struggles and limitations rather

than their strengths and gifts (Connor, 2013; Griffin & Pollak, 2009; Madriaga & Goodley,

2010). From this perspective a model of what is typical human development and learning is held

up as a standard and individuals with neurodevelopmental differences are judged by their

conformity to that standard. Any development, behaviors and cognitive processes that deviate

from that standard are considered a deficit. In the medical model the goal is to mediate the

deficit, fix the problem. Fixing, of course, can come in many forms; medication, behavioral

modification, educational interventions (Kapp, Gillespie-Lynch, Sherman & Hutman, 2012;

Wheeler, 2011).

There is another way to look at neurodevelopmental differences. In this alternative way,

individuals are appreciated for who they are, valued for their unique capabilities and accepted for

their differences, not marginalized for their deficits (Brownlow, 2010). This perspective has

been embraced by the neurodiversity movement, which was started by neurodiverse

individuals who didnt see themselves as broken. They view their neurological differences as

strengths: unique perceptions and perspectives that contribute to a more diverse and therefore,

better world. The neurodiversity movement allows us to say difference is a good thing. It allows

us to reframe our social, educational and cultural expectations that seem to be getting more

restrictive and standardized with each passing day (Armstrong, 2010; Brownlow, 2010).

Broderick & Neeman (2008) explore the use of metaphor in the discourse on autism and

seek to show how metaphor has been used to medicalize and diminish those in the autism

community, but also to support a counter-narrative (p. 459). They say,

The bulk of the support for metaphorically framing autism within a disease model comes

from within the non-autistic (neurotypical or NT) community, whereas the bulk of the

support for metaphorically framing autism within a neurodiversity model comes from

within the autistic community (and is inclusive of some non-autistic allies as well). In

exploring these competing cultural narratives, we argue for the crucial import that

counter-narrative can play in the process of cultural critique and resistance to ideological

hegemony. (p. 459)

There is an unspoken acceptance of dominant neurotypical consciousness and social

norms that promote a culture of disability rather than diversity throughout our society, including

in higher education. Brownlow (2010) in her research regarding the understanding of

neurodiversity and the construction of the term Neurologically Typical syndrome (NT) states:

The benchmark of NT traits as representative of normality serves as a reflection on power

relations operating within society (p. 254). Chown and Beavans (2012) literature and research

review of autistic students in higher education supports the concept of a dominant neurotypical

consciousness. Their research reveals negative labels often ascribed to students with autism

which reflects just such a consciousness; labels such as too challengingtoo different.too

difficultlack of conformity (p. 480). They suggest, labels are simply an expression of

a lack of awareness and understanding of autism on the part of neurotypical teachers and others

(p. 481).

College instructors, staff and service providers are adult learners who have unique

identities and relationships to learning environments that have been created through past

experiences and consequently they may or may not approach certain educational experiences

with an open mind (Mezirow & Taylor, 2009). The challenge of asking professors and college

staff who operate on a belief system about neurodevelopmental differences that is reinforced by

current social norms to embrace a new way of thinking is daunting. For example, Barnes (2007)

states, many lecturers are reluctant to accept the fact that it is both justifiable and necessary

to provide additional help and devise alternative modes of assessment for students with particular

access or communication needs (p. 142). Part of raising awareness of neurodiversity includes

critically reflecting on personal beliefs of disability and being open to new ways of looking at

disability.

Finding Solutions

Sanger (1990) tells us, Empowermentrelates to the potential for change within the

individuals deeper structures of sedimented knowledgeThe problem we face is how to disturb

these deeper layers of calcified experience in order to enable meaningful deep change to take

place and new kinds of structures to develop (pp. 174-175). Hansman and Wright (2009)

write: when teachers make the decisions of what knowledge is necessary and valuable,

education becomes no more than a mechanism for enforcing hegemonic values and social

control (p. 207). What is needed is not another mandate directing professors to implement

yet another set of accommodations (although this is part of our current mode of inclusive

education for those with disabilities) but rather an opportunity for faculty and staff to examine

how they view their students and themselves in their roles not only as educators and service

providers, but also as human beings in relationship with others.

Taylor (2009) discusses a core element of transformative learning as being critical

reflection. He defines it as questioning the integrity of deeply held assumptions and beliefs

based on prior experience (Mezirow & Taylor. p.7). Langes (2004) research study,

Transformative and Restorative Learning: A Viable Dialectic for Sustainable Societies

discusses adults experiences with disillusionment and fragmentation in their work lives as a

result of new neo-liberal economic policies and how a combination of transformative and

restorative education was able to help restore their connection to their core values and principles

and feel empowered once again to live and work according to their convictions. A theme

emerged from her research that I believe to be an important component in facilitating a shift in

consciousness on the part of the higher education community. She states,

one of the most significant discoveries in this study was not disruption but the

restoration [sic] of the participants foundational ethics to a conscious place in their

daily lives As the participants restored forgotten relationships and submerged ethics,

they transformed their worldview, habits of mind and social relations. (p. 135)

Langes (2004) research shows that finding ways to allow individuals to reconnect to previously

held beliefs and aspirations around their personal and professional lives, ways of viewing the

world before the frenetic work pace, longer work hours, exhaustion, stress, anxiety, burnout,

health crises and personal crises (Lange, 2004. p. 124) buried their spirits and squeezed dry

their capacity for compassion, can create personal rejuvenation and connection. Once the

reconnection and rejuvenation has happened at a personal level, wider community change can

follow (Mezirow & Taylor, 2009).

Fostering an interest in and dedication to social justice in higher education across

disciplines and between administration, faculty, staff and students is central to the concept of

supporting all students with disabilities, regardless of a particular embodiment of disability.

Oliver and Barton (2000) say,

Developing a constructive, collaborative working relationship with a range of

colleagues resulting in co-operation over teaching and research, will be an extremely

demanding task. Part of the relationship needs to be about clarifying values and

providing insights into not only a theory of social change, but also how that can be

brought about in practice. The generation of an ethos of mutual respect, lively and

constructive debate and the establishing of realizable goals will all contribute to a more

inclusive approach to research, teaching and learning outcomes. This development will

take time, serious effort, a willingness to listen and learn and an ability to deal with

conflict constructively at the level of ideas and values. (p. 12)

It is clear that faculty and staff alike need help in supporting this relatively new and growing

population of students (GAO, 2009; Hart, Grigal & Weir, 2010; K. DeYoung, Personal

Communication 2013; Van Bergeijk, Klin & Volkmar, 2008; Orr & Hammig, 2009; Smith,

2007). While professional development opportunities are available, the information provided is

not always appropriate or specific to the needs of neurodiverse students (Madriaga & Goodley,

2010; Scott & Gregg, 2000; Smith, 2007). Conversely, research shows that faculty and staff who

have attended appropriate professional development opportunities have more positive attitudes

and perceptions of students with disabilities (Brockelman, Chadsey & Loeb, 2006; Lombardi &

Murray, 2010; Murray, Flannery & Wren, 2008; Murray, Lombardi, Wren & Keys, 2009; Scott

& Gregg, 2000; Wolman, McCrink, Rodriguez & Harris-Looby, 2004).

For these reasons, part of this inquiry project entailed developing an interactive workshop

to facilitate collaboration between faculty and staff to identify specific areas of need around their

interactions with neurodiverse students. My intent was to utilize principles of transformative

education and emancipatory research which Oliver (1992) describes as fundamentally changing

the framework of social research from a positivist perspective to one in which the research is

done not just as research for researchs sake but with the intent of empowerment. To quote

Oliver (1992), The issue then for the emancipatory research paradigm is not how to empower

people but, once people have decided to empower themselves, precisely what research can then

do to facilitate this process (p. 111; Mezirow & Taylor, 2010).

In a similar way I believe that transformative education can be seen as emancipatory

education, in that it fundamentally changes the framework of the teacher/student relationship

from a dependent relationship to one of empowerment. Neurodiverse students on college

campuses are there because they feel empowered to pursue their dreams and aspirations just like

their neurotypical peers. If we were to adapt a model of emancipatory education then it would be

incumbent upon faculty, staff, administrators and service providers to support neurodiverse

students goals via the educational and social experiences college campuses offer. Specific to

neurodiverse learners, the transformative educational process creates a learning environment that

nurtures and respects individual life experiences and allows those experiences to contribute to

the learning process of both student and other individuals with whom the student interacts.

In an environment that embraces neurodiversity, individual differences in social

communication, behavior, learning, life interests and activities of neurodiverse individuals are

regarded as valuable and important contributions to a healthy and diverse society. By

encouraging those of us who identify as neurotypicals to become aware of our expectations

and assumptions of social and educational norms, we can then begin to accept that there are

others in our society who have different priorities, goals and perspectives than ours. It is clear

that this can be a challenge in higher education for staff, faculty and students.

Experiencing dissonance can be the catalyst for transformation (Mezirow, 2010). For

individuals who have not experienced the marginalization of disability, reversing a deeply

entrenched belief system regarding neurodiversity can create dissonance. We are comfortable

and complacent in our own concordance with the norm. The neurodiversity movement with its

critical reflection of assumptions of normal as embodied in the field of Disability Studies and

the injection of a diverse student body into higher education have the potential to work together

to act as a catalyst for great transformation. For neurodiverse individuals themselves, being

encouraged to embrace their differences and seen as valuable members of their educational

community is empowering. To quote autistic self advocate and author of the blog Autism

International, Jim Sinclair, as cited in Solomon (2012) says,

The ways we relate are different [sic]. Push for the things your expectations tell you are

normal, and youll find frustration, disappointment, resentment, maybe even rage and

hatred. Approach respectfully, without preconceptions and with openness to learning

new things, and youll find a world you could never have imagined. (p. 279)

Theoretical Perspective

The theoretical perspective that informed this inquiry project comes from a Critical

Disability Studies (CDS) approach. Pedagogy in Critical Disability Studies privileges disabled

individuals lived experiences including their interactions with the structures and systems that

define society, both historically and currently. Just as Womens Studies, Ethnic Studies and

Gender Studies have come about as a result of growing recognition of their significance as

social/cultural groups, Critical Disability Studies as an academic field reflects the growth in self-

advocacy of individuals with a variety of disabilities and the increased recognition of their rights

under the law (ADA; Taylor, 2011).

Significantly, Critical Disability Studies seeks to destabilize the dominant perspective of

disability as a solely biological/medical phenomenon. Its roots are planted firmly within the

environmental features and social mores which create conditions of disablement for individuals

whose biological/physiological identities fall outside the norm (Connor, 2013; Taylor, 2011).

Meekosha and Shuttleworth (2009) state: CDS has accompanied a social, political and

intellectual re-evaluation of explanatory paradigms used to understand the lived experience of

disabled people and potential ways forward for social, political and economic change (p. 49).

This theoretical perspective is integral to my personal experience as a parent of an autistic child

as well as my professional goals and research.

Statement of Bias

There cannot exist a wholly value-free experience. Insofar as we are each made up of the

interactions, relationships, cultural, political and economic environments in which we have

existed since our very beginnings, we are a product of those experiences. Were it not for my

experiences parenting two very different children (one who carries the label autistic, one who

carries the label neurotypical), my professional educational experiences in special education

witnessing the marginalization rather than empowerment of special needs students, the eighteen

years of experiences teaching struggling students my husband has shared, the narratives of other

parents of neurodiverse children and countless other life experiences of the joys and hardships

inherent in going against the flow of dominant social expectations, I would most likely not be

conducting this particular research (Behar, 1996).

For me, research is at its most meaningful when it tells a story. Research is at its best

when it reveals truths of injustice, misrepresentation, erroneous assumptions; when it blows apart

tightly held beliefs and practices of oppression and marginalization. Miller & Kirkland (2010)

say, we view social justice as seeking to unpack truths that challenge master narratives and

unveils counter-narratives that often go untold or ignored altogether (p. 3). In this case the

master narratives are created by those privileged with power and authority and the counter-

narrative is the voice of the oppressed and marginalized within our educational system.

Nowhere is the master narrative more evident and pervasive than in the field of Special

Education. Nowhere is there a more pressing need for social justice research than in the

education and development of individuals labeled as disabled. Miller & Kirkland (2010), in their

Glossary of Terms define an important term, Social Justice Methodology. The definition is as

follows:

As research methodology it presupposes a transformational outcome and grounds

itself within theoretical social justice perspectives, it examines topics related to social

justice or injustice, draws upon data analyses that are dialogical and discursive, and

represents the data in ways that authenticate the experiences of the individuals (p.xxi)

Historically, not only have childrens voices in general been lacking in educational research, but

even more so, the voices of the disabled; children and adults, their families and caregivers have

been excluded from research.

As a parent of a child with the label of disability, I have a bias against educational

practices that privilege the hegemonic neurotypical ideal of knowledge, ability and success.

As a person of privilege (white, well-educated, middle class) as well as a member of a

marginalized group, I feel compelled to disclose educational practices that privilege the master-

narrative and exclude the counter-narrative. Witnessing my oldest sons struggles in higher

education despite his remarkable intellect and passion for his field has been the impetus for my

research. Corroborating research drawn from an international body of work parallels in many

way, my sons experience and reinforces the need to examine attitudinal barriers as one of the

important components of neurodiverse students experiences in higher education.

Methodology

The purpose of this study was to identify, examine and attempt to alter attitud