Volume 15 Image by Denise Massa
 

State of Inclusion: Helping Both Autistic Individuals and Society Reach Their Full Potential

By Allison Bartoszewicz

Screen shot 2015 05 05 at 6.12.04 pm

When I was growing up, I never quite understood why my Uncle Tom still lived with my grandmother. I could not comprehend why he never had the opportunity to move out and live life on his own, why he could not have the same quality of life as my dad and his other siblings. After all, he was the beloved "T-Bird" of Lawrenceville, Pennsylvania, the man with a sarcastic interjection for every occasion, and the fan who attended almost every sporting event I ever competed in. He was far from an underachieving couch potato who remained under his mother's care out of laziness. Sometimes his unconventional interactions with the world around him pointed to the fact that he was wired a bit differently from other men his age, but this never fully justified to me his continuation as an unemployed dependent. He was clearly a capable, intelligent individual, so why did his being a little different entirely exclude him from the "real world" of independent, employed adulthood?

I later learned that this "difference" had a name: autism. Autism, or more technically, Autism Spectrum Disorder (ASD), is defined as "a developmental disability that causes significant social, communication and behavioral challenges." Individuals with this disorder can be recognized by the ways their communicative, interactive, and learning behaviors differ from other people ("Autism Spectrum Disorder" CDC). Such people in no way lack interests or desires, but tend to struggle with expressing these to others, or do so in a way deemed unconventional or inappropriate. They also tend to have difficulty picking up social cues, remaining on topic, and "extending topics with new, relevant, and/or sufficient information" (Zager and Alpern 152). This lack of communication skills is very much misunderstood in mainstream society as being indicative of intellect and ability levels, and therefore is likely a main reason for the frequent exclusion of autistic individuals like my uncle from both higher education and the professional world.

For my Uncle T-Bird, autism meant that despite all of his talents, he was an unlikely candidate for the degree of employment that would allow him to support himself. Services that aided him in overcoming obstacles posed by the disorder had been available throughout his childhood, but when he graduated from high school, there was a steep decline. During this crucial transitional stage of his life, preparation for adulthood—including counseling for independent living and entering into the professional world—was practically nonexistent, and the prospect of his going on to college was unthinkable. A large fraction of available employment is out of reach for my uncle and other autistic adults due to their social handicap's hindrance of their ability to interact successfully with customers, clients, coworkers, etc. Furthermore, there is an underlying expectation of students in the postsecondary education setting to effectively communicate ideas with professors, faculty, and peers (Zager and Alpern 152). A lack of "people skills," therefore, means frequent exclusion of autistic individuals from college campuses, and thus the additional flood of job opportunities available upon the earning of a degree also remain unattainable.

Although I now understand what led to Uncle T-Bird's current situation, I cannot help but think that an increase in counseling services and educational opportunities could have maximized his abilities and ultimately led him to an overall higher quality of life. In this essay, I will explore these facilitating services that currently exist. I will first highlight two pieces of legislation passed to enforce increased attention on the oft-neglected transitional stage of autistic young adults and will then go on to investigate existing inclusion-based programs on college campuses that also address this need. My main criterion for assessing such programs' successes lies in their ability to improve social skills of autistic individuals in a way that adequately prepares them for independent and employed adulthood. In delving deeper into the roots of the current state of inclusion (or exclusion), I aim to conclude how these programs can bring about the needed shift from a society that tends to isolate autistic individuals to one that fully capitalizes on the abilities of each of these men and women.

Existing Legislation

The need for the services to facilitate autistic individuals in transitioning into post-graduation life has been addressed in several pieces of federal legislation over the years. For example, the Individuals with Disabilities Education Act, first introduced in 1975, requires that educational services be offered to all children who have disabilities, regardless of the severity (Gerhardt 10). In 2004, the act was upgraded with an increased focus on providing special needs learners with the services necessary for "post- graduation education, vocational training, integrated employment (including supported employment), and community living and participation." This act enforces the transitional planning and support system autistic students need, even requiring individual-based programs based on the student's talents and interests rather than his/her skills deficits. It also aids families with the excess costs needed to acquire these services. On paper, the IDEA seems to be the perfect non-discriminatory solution to the problem at hand. However, as will be discussed in greater detail later, the problem of underemployment persists, indicating that the act fell short of its goals of reaching all disabled individuals (Gerhardt 9-10). That being said, it provides a strong model for the services needed, as well as the level of availability needed to these services, if the goal of a more inclusive society is to be reached.

Another piece of legislation also directed toward transitioning autistic individuals into employed, independent adulthood is the Vocational Act of 1973, which grants disabled individuals access to programs and services receiving federal funds (Gerhardt 10). Vocational Rehabilitation agencies offer support services such as guidance/referral services, vocational counseling, "on-the-job" training, and supported employment. These are key in preparing an individual with the skills they will need when employed, while also easing them into a niche in the workforce that is best suited for them. Similar to the IDEA, the Vocational Rehabilitation Act enforces the development programs based on the specific needs of each student, also known as "Individualized Plans of Employment" (Gerhardt, Cicero, and Mayville 106). As autism is a spectrum disorder, this individualized approach allows each student to receive the aid they need to reach personal goals while maintaining the highest level of independence possible. Thus, this is an effective approach in integrating each unique ASD individual into mainstream society. Another promising aspect of Vocational Rehabilitation services is their avoidance of segregated employment settings, whose overly structured programs tend to isolate ASD employees from their coworkers and fall short in the amount of independence the ASD individual is capable of. Employment of Vocational Rehabilitation service recipients is not considered successful, in fact, unless it is in a fully integrated environment (Gerhardt, Cicero, and Mayville 107). This stance solidifies that the goals of these services coincide with those en route of a genuinely inclusive society.

Campus-Based Programs

In addition to government-provided post-graduation services, there has been a rise in the amount of colleges offering support programs that allow students to live and study in a fully inclusive environment alongside their peers. Inclusion of young adults on college campuses achieves a number of positive outcomes, such as social enrichment, a natural transition into independence, and a bolstered level of employability. As mentioned previously, college is a very socially demanding environment, both within and outside the classroom, which can be demoralizing to someone with autism. To avoid the negative consequences this may lead to—lowered self-esteem, isolation, etc.—and instead enhance the positive social development such stimulation may cause, colleges adopting ASD support services offer a variety of programs focused on social skills formation. This includes, but is not limited to: mentoring, social skills groups, and planned social event/activities geared toward welcoming autistic students into the heart of the student body (Brown, Wolf, and Kroesser 122-125). Students may attend scheduled sessions where they are instructed on appropriate responses for given situations and taught standard conversation skills for use while on campus and in their post-college lives (Zager and Alpern 154). As they continue to put these skills into practice, autistic students will gain the social confidence they need to go forward and succeed in the "real world."

Paired with strengthened social development, inclusion-based programs on college campuses also provide autistic individuals with a manageable transition from parental dependency to a higher level of self-sufficiency. On-campus dorm living seems to be the central catalyst of this transition, as individuals must learn how to take care of themselves without constant guidance. There are various types of living situations available from college to college for students on the spectrum, and thus each individual ought to be able to have an on-campus experience best catered to his or her needs. More highly functioning students may benefit from inclusion-based campus programs such as that of Rutgers University, which fully integrate autistic young men and women into the mainstream student body, placing them in the same dormitories as their peers who are not on the spectrum. Those fit for this arrangement will learn to be independent both from their peers and from their being in an environment where self-sufficiency is the only choice they have. Options are also available for those in need of more support. For example, Mercyhurst University offers a "Learning Living Environment" residence hall that houses twenty-five students on the spectrum, with constantly available mentors and services if ever a resident is in need. This gives individuals a low-risk opportunity for independence, with the added benefit of forming meaningful social relationships with people they can relate to. Group outings are also planned to on- and off-campus events, providing the students the opportunity to integrate with the rest of their peers without venturing too far out of their sphere of comfort (Carlotti 2). Thus, the range of on-campus living arrangements available to autistic students allows for each individual to find a program that caters to his or her needs without impeding his/her potential for independence.

Finally, inclusion of ASD individuals on college campuses serves as an important vehicle toward a higher level of employability that will ultimately allow autistic men and women to support themselves as independent adults. Young adults on the spectrum whose highest level of education is high school face an increasingly limited amount of employment options, most of which are low-wage and/or slowly being replaced by technological advances (Carlotti 2). This makes earning a college degree even more crucial for spectrum individuals seeking to maximize their capabilities in the workforce. Earning a college degree gives rise to more job opportunities, as men and women who hold this accomplishment become much more marketable to employers than they had been directly out of high school. This is due to the fact that the qualities necessary for one to acquire a degree—critical thinking, perseverance, self-motivation, etc.—are all very attractive to employers as they consider various candidates for a position (CollegeAtlas.org). Furthermore, a college degree is an especially important asset to an autistic young adult in that it shows that he/she too possesses these qualities and was able to achieve this feat despite the challenges posed by his/her disability. Programs fostering the inclusion of autistic students on college campuses are therefore valuable in the preparation of these young adults for professional success as well as self-sufficiency.

Recognizing, Understanding, and Addressing the Gap

While the majority of these programs outlined present effective ways in which to aid autistic young adults in continuing to progress after high school graduation, recent statistical findings indicate that for most of these men and women, participation in these programs is not the norm. According to a 2012 study in Pediatrics, only 35 percent of young adults with autism went on to attend college, and only 55 percent were employed within the six years following their high school graduation (Goodwin 1). The experts involved in this study concluded that this was a direct result of the social barrier the disability can construct—the same social barrier the services previously discussed in this essay have been shown to gradually tear down. If these successful programs are available, then why are the individuals utilizing them in the minority? What allows for the continuation of this gap? The answer seems to be two-fold: 1) the current programs are not available to all ASD young adults who require them, and 2) there is a tendency to overlook the potential autistic individuals have to offer positive contributions to society if included and given proper support (Gerhardt 6-7).

Alleviating the current programs' lack of availability calls for an increase in the volume of these programs, making their services more widespread and available to all young adults on the spectrum who need them. This can be achieved though increased federal funding, which would allow for agencies to hire additional qualified staff members, consequently yielding more possible recipients of the services. As is, programs that serve young adults with developmental disabilities face a staff vacancy rate of approximately 10-11%, mainly as a result of inadequate pay (Gerhardt 16). There is also a need for more colleges to adopt facilitating programs that will welcome ASD students into the student body in a supportive-yet-inclusive environment. If more of these successful facilitation services become available, and families of ASD young adults are made aware of them, the distance between our current state and a state of complete inclusion will slowly be reduced. If not, the problem could potentially worsen, as the prevalence of autism is on the rise. In 2000, it stood at about 1 in 150 children, while the most recent projection only fourteen years later states that 1 out of every 68 children will be on the spectrum ("Autism Spectrum Disorder: Data & Statistics," CDC).

Finally, the isolation of autistic adults prevails despite the existing services due to a common misunderstanding that these men and women are incapable of being independent and contributing members of society (Gerhardt 6-7). There is a general tendency to overlook the intelligent, capable beings that lie behind the façade of social disabilities. Autism is too often associated with lower intelligence, especially given the findings such as those in the U.S. National Library of Science that indicate very limited linkage between ASD and IQ (Charman, et. al. 2011). Furthermore, many of the children we deem "prodigies" actually show symptoms of autism, or are even diagnosed with some form of ASD (Szalavitz 1-2). If the capabilities and talents each autistic individual possesses and can ultimately contribute for the greater benefit of society are recognized, the goal of an inclusive society comes much closer into view.

Progress in the sphere of transitional aid for ASD individuals has been on a promising increase over the years. Programs exist, particularly those enforced by federal funding and those offered on college campuses, that help autistic individuals overcome the challenges of their disability and prepare for life as independent, working adults. The current state of underemployment for these individuals seems to be less a result of their disabilities and more of a consequence of the inadequate availability of these programs. When all young adults on the spectrum have access to the services they need, they will be able to enter into adulthood with confidence, able to contribute all of their oft-overlooked talents as members of mainstream society.

In the generation following my Uncle T-Bird's, on the same branch of my family tree, is my 24 year-old cousin, Emily. Emily, too, is an extremely gifted individual, with a creative, happy spirit, and a memory so advanced that she not only remembers everyone's birthday, but also a list of their favorite things, which she factors into the unfailingly perfect gift she gives them when the day arrives. And, like Uncle T-Bird, Emily is on the autism spectrum. However, Emily is currently in the process of applying to Marshall University, with the goal of utilizing on-campus support services to earn a degree and enter into adulthood with confident independence. She is a remarkable example of an ASD young adult refusing to remain isolated from the "real world" by her conquerable disabilities, and it is my hope that by the next generation, the generation of my own children, this will be a universal expectation for all autistic individuals.