Autism Spectrum Disorder in the College

  Running head: ASD in the College Population Autism Spectrum Disorder in the College Population Diane Simpson Brown, Ed.D.

  AUT 501 University of Washington Fall 2013

  Abstract Increased awareness, an influx of early identification of children with autism spectrum disorder (ASD), and access to services at the K-12 level over the past 20 years mean that a larger number of individuals with ASD are and soon will be pursuing higher education. The limited studies conducted thus far show a disproportionately low number of individuals with ASD attending college as compared to other disabilities, a broader autism phenotype among the general population, and a pattern of poor outcomes for adults with autism after leaving high school. Further research on ASD in the college population is needed as well as a need for transitioning support for individuals with ASD and awareness training for college staff and instructors to increase student retention, graduation, and successful entrance into the workforce.

Autism Spectrum Disorder in the College Population

  Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder with persistent deficits in social communication and social interaction including impairment in social-emotional reciprocity, nonverbal communicative behaviors, and developing, maintaining, and understanding relationships (American Psychiatric Association, 2013). ASD is an extremely heterogeneous disorder that additionally displays restricted, repetitive behaviors, interests, or activities and varies in severity. The broadening criteria for ASD identified in the DSM-5 (2013), combined with increased awareness and early intervention at the K-12 level mean that an increasingly larger number of individuals with ASD are and will be pursuing higher education.

  About 50,000 adolescents with ASD turned 18 years old in 2012 in the United States alone and very little evidence based research is known about the outcomes among these young adults (Shattuck et al., 2012). At the present time, higher education institutions are underprepared in identifying these special populations and how to best serve their needs. One aspect of ASD is a lack of social awareness and how to go about finding resources. It is highly probable that we have a significant population of college students on the spectrum who are not gaining any supports, do not do well in classes or in navigating the complex social independence required of college level work, do not graduate, and remain unemployed or underemployed at best.

  Research on ASD prevalence in the college population has been hard to identify, especially with the changing diagnostic criteria in the 1990s and again changes that recently occurred in the APA Diagnostic and Statistical Manual in May, 2013. According to the DSM-IV-TR [CITATION Ame00 \n \t \l 1033 ], Autism fell under three types: Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Considering the wide range of cognitive functioning among the autistic population, most research studies chose to would not be attending a four year institution. Asperger’s Disorder as it was defined prior to 2013, while still a major hurdle in social communication, responsiveness, and relationships, seems to be viewed as an exception in regards to stigma (Butler and Gillis, 2011) and not viewed either by the general population as severe as Autistic Disorder or perhaps by higher education as one that demands attention to be studied. Some institutions even questioned how or if they should allow accommodations with college students with an Asperger’s diagnosis [ CITATION Far04 \l 1033 ]. Due to this previous separation of subtypes, studies tend to focus on one type and are less meaningful to the current diagnosing umbrella catching the entire spectrum that is bound to show an increasing trend of young adults on all aspects of the spectrum not only graduating from high school, but attending college.

  Prevalence Studies Figuring the prevalence of autism spectrum disorder among the college population is challenging, particularly when studies narrow variables to one specific group, such as High

  Functioning ASD or Asperger’s. An additional challenge is that once individuals finish high school, if they are not part of an ongoing study, they are simply not being tracked. The two basic pathways for youth finishing high school are to start postsecondary education or enter the workforce. Little is known about the outcomes of either pathway in ASD, but what is reported shows too many youth with ASD are uninvolved in their communities, not gainfully employed, or work at jobs below their education level, particularly if they are from low income families (Shattuck et al., 2012).

  White, Ollendick, and Bray (2011) hypothesized that the prevalence rate among the general college population for the broader autism phenotype was greater than the actual students attending a midsize 4 year university, they administered a battery of tests, including the Autism Spectrum Quotient (AQ), the Social Responsiveness Scale (SRS), and additional scales to measure aggression, anxiety, and depression. Though not the diagnostic standard for autism spectrum disorders, the AQ is a self-report 50 question survey to measure any adult of normal range IQ to look for autistic traits, known as the “broader autism phenotype” (Baron-Cohen et al., 2001). White et al. (2011) identified 13 students in the sample above the AQ cutoff. Eight of the 13 agreed to participate in further testing using the “gold standard” Autism Diagnostic Observation Schedule (Lord et al., 2002). Five of these individuals met criteria for high functioning ASD. None of the students had previously received an ASD diagnosis. The student disability office at the university reported only 10 students were on record for high functioning ASD and none were among the 13 identified above the AQ cutoff. White et al. (2011) concluded based on their findings that .7-1.9% of the college population is on the spectrum in the higher functioning range without intellectual disability and a higher number than originally expected are entering college without being previously identified.

  Jobe and White (2006) conducted a study at a large, urban university to investigate a possible relationship between social functioning and a broader autism phenotype. Ninety-seven undergraduate students were administered the Autism Spectrum Quotient (AQ), the UCLA Loneliness Scale, and an adaptation of the Striving Assessment Scale. They were additionally given a dating and friendship history questionnaire. While no students scored above the clinical cut-off on the AQ, 25 students (almost 25% of the sample) trended in the “autistic” direction on their test results, indicating considerable deficits in social skills. They found a significant negative correlation with overall AQ score and length of best friendship, meaning that those with and length of friendships were also negatively correlated was confirmed, but dating status did not correlate with loneliness. Somewhat surprisingly, those with higher AQ score (leaning toward the ASD phenotype) reported fewer but longer lasting dating relationships. The authors speculated this could be due to the “preference for sameness” and resistance to change that is typical of autism spectrum disorder (Jobe and White, 2007). They did not report whether students showing the broader ASD phenotype were doing any poorer in school than their counterparts, but they do emphasize the importance of studying the general college population to understand how to better support non-diagnosed college students in their social skills and personal relationships.

  Shattuck et al. (2012) took a different approach in measuring prevalence of the ASD population in postsecondary education by using data from the National Longitudinal Transition Study 2 (NLTS2), wave 4, which was collected in 2007-2008. The NLTS2 is a 10-year longitudinal study of youth receiving special education services and was conducted for the US Department of Education. This sample included 680 youth with autistic disorder, 500 of whom were out of high school. They gathered data by telephone survey of the 500 parents or guardians from the wave 4 sample. They found 28% had attended a community college (or 2-year school), 12.1% had attended a 4-year college, a combined 2 or 4-year rate of 34.7%, and 9.3% attended a vocational or technical program. Rates of college attendance were significantly lower for ASD youth than those with speech/language impairment or learning disability and higher than those with intellectual disability (formerly termed mental retardation per this publication). Overall, they found that individuals with ASD were at the highest risk prohibiting them from entering postsecondary education, and even less likely to complete a college degree if they do. Their difficulties seem to also create barriers for gainful employment or work at the level of their especially in obtaining any higher education. Of families with an income below $25,000, 79% of youth with lowest functional skill were completely disengaged from postsecondary education or employment as compared to 45% of lowest skill level in the above $75,000 family income bracket (Shattuck et al., 2012). Considering the expense of a college education and it being more likely that low income parents of youth with ASD are not college educated themselves and possibly not exploring this as an option for their children, puts poorer youth at a significant disadvantage as compared to more affluent families after leaving the safety net of public high school.

  Wei, Yu, Shattuck, McCracken, and Blackorby (2013) investigated the possible relationship between college students with ASD and participation in science, technology, engineering, and mathematics (STEM) fields. They note that while there are theories that individuals with autism gravitate to STEM, no studies have actually measured a connection between ASD and STEM fields. Theories of cognitive development in individuals with ASD attempt to explain that they like and understand science, math, technology, and engineering due to an aptitude toward “systemizing” or analyzing information on a rule-based system, as opposed to “empathizing” by using social and emotional responses to other people’s thoughts and feelings. Most of these ideas about ASD and STEM come from portrayals in popular media and are anecdotal.

  Wei et al. (2013) used participants from the National Longitudinal Transition Study-2 with wave 5 (collected in 2009) parent and young adult phone interviews and mail surveys as well as school and teacher surveys, transcript data, and in-person assessments and interviews. A total of 660 young adults with ASD were used in the data set. They found that young adults with ASD had lower rates in attending a 2-year community college (27.66%) or 4-year college (14.95%) attending college, there was a higher rate majoring in STEM related fields (34.31%) than other disability groups. College students with ASD were not prevalent in non-STEM majors (health sciences 7.64% and social sciences 9.52%). These results did concur that of the ASD population that pursues a postsecondary education, they are more likely to major in STEM fields than other degrees, particularly in science and computer science. Although these numbers may seem promising, Wei et al. (2013) point out that ASD was the third lowest of all disability categories to enroll in postsecondary education and this is disproportionate to the number of total young adults with ASD and needs to be addressed in educational research and improvements in educational policy.

  Associated Problems Autism spectrum disorder is not only a heterogeneous disorder where no two individuals present identically, there are often comorbid disorders, symptoms and associated problems that interfere with an individual’s ability to learn or function independently on a day to day basis. Only with the new DSM-5 (2013) can individuals receive a dual diagnosis of ASD and attention deficit hyperactivity disorder (ADHD). Although it has been known for decades among clinicians that these two disorders can co-occur, only very recent publications are gathering data on the comorbidity of these disorders, as opposed to previous studies citing them as “symptoms” or “types” related to associated disorders. Essentially, clinicians and practitioners have been giving the dual diagnosis for years, but only now can systemize the data using DSM criteria and begin to understand prevalence and differing approaches in therapeutic and pharmacological treatments (Matson, Rieske, and Williams, 2013). Due to the DSM-IV-TR (2000) not allowing the dual diagnosis of these two common childhood disorders, the estimates of co-occurrence are data from large scale studies show it is likely about half the ASD population also meet criteria for ADHD.

  Any time a person has two distinct disorders, this is going to present an even higher demand on the individual’s ability to function. Even though ADHD presents with a primary deficit in attentional processes, the problems it creates in a child’s ability to focus in school or at a task can create behavioral problems and consequently have negative social repurcussions with peers. In this way, it is similar to what many children with autism may experience as they cannot relate to typical developing children and have difficulty fitting in. Consequently, either of these disorders can manifest into anxiety or specifically, social anxiety. If both ASD and ADHD are present, then it is even more likely the child will also develop social anxiety, and further down the road in his or her development could result in depression as well. Many of these cases are describing the diathesis-stress model, which is like the “chicken and the egg” conundrum. We do not necessarily know what condition is causing another, just that the pressure and added demands from one impairment create stress that continues to perpetuate other problems, such as generalized anxiety or depression. It could also come as a result of what Albert Bandura [CITATION Ban86 \n \t \l 1033 ] termed “reciprocal determinism” where one’s self-efficacy – or self belief in a particular domain – influences what social enviornments we put ourselves in (or avoid) and impacts how we behave. The process then continues a feedback loop in which we use cognitive appraisal, self evaluate, and adjust behavior accordingly and so on. If we have low self-efficacy in social situations, we tend to shut down, withdraw from society, and are more likely to suffer from social anxiety and/or depression.

  Social anxiety (or social phobia) is being fearful of social situations or performance criteria of autism spectrum disorder showing impairments in social interaction, communication, and relationships, it is not surprising that these individuals have had negative experiences in social situations, particularly with their peers. It is likely that their past negative experiences and inability to respond appropriately in social situations has created a feedback loop of low self- efficacy (and although perhaps accurate self evaluations) manifests into an anxiety disorder.

  Freeth, Bullock, and Milne [CITATION Fre12 \n \t \l 1033 ] conducted a study using a large UK college student population (n = 1325) using the Autism Spectrum Quotient (AQ) and the Liebowitz Social Anxiety Scale. They found a signficiant positive correlation between autistic traits and social anxiety, in particular those students scoring high on autistic traits in social skill were predictors for heigtened anxiety in situations or activities pertaining to the successful completion of their college degree. Considering the study was looking at a general student population and not registered students with ASD, this has significant implications on the well-being of college students with autism and their ability to cope and transition successfully in order to graduate.

  Transitioning and Support Individuals with autism spectrum disorder who have managed to attend postsecondary education tend to be higher functioning, which is a nonclinical label usually meaning people without intellectual disability and a full-scale IQ above 70 (White et al., 2011). The other group making up a larger percentage of college students with ASD have Asperger’s syndrome, which though no longer a separate diagnosis under the new DSM-5, make up significant numbers in the data on college students to date (VanBergeijk, Klin, and Volkmar, 2008). The majority of individuals on the autism spectrum have these milder forms and if no intellectual disability is

  2005, it was estimated that the number of children with Asperger’s alone was double the number of children with classic autistic disorder (VanBergeijk et al., 2008). Even though many of these students are academically capable of doing college work, there are many challenges to face in the complex social and independent interpersonal skills that are required to navigate a two or four year degree. Very little research has focused on the impact of transitioning from high school to postsecondary education for these individuals with ASD and therefore colleges and universities do not know what the unique needs are for this population to succeed.

  Students with ASD may receive special education services under the Individuals with Disabilities Education Improvement Act (IDEIA, 2004) or Section 504 plans of the Rehabilitation Act of 1973 during their time in public K-12 education (Adreon and Durocher, 2007). Early identification and intervention for students can have a significant impact on developing a child’s optimal potential and increase the likelihood of graduating from high school and gaining admittance to college, espcially if no co-occurring intellectual disability is present (Nevill and White, 2011). There are several issues to consider in transitioning to postsecondary education, especially if the youth is going from a very high level of support as mandated under

  IDEIA, to a system where gaining services from the college disability office is reliant on the student being his or her own advocate. Even when a student is proactive (often with help of a parent initially), the college evaluator may determine different accommodations than what the student received when in high school (Adreon and Durocher, 2007).

  Even for typically developing youth, transitioning to college is a stressful time. Experiences differ depending on what type of institution the student is attending, whether they are moving away from home, and how familiar they are with the setting. It is known that

  “insistence on sameness”. Suddenly now not only is the daily routine disrupted, there are a sea of new faces, new academic expectations, and new social expectations. According to VanBergeijk et al. (2008), the first step is finding the “right fit” between a particular student with ASD and the college or university. For many students, 2-year community colleges is a good choice because they can experience the new challenges of college work, but not face the added new challenges of leaving home and can keep many of their routines intact. The downside is if they then transfer to a university, a second transition must take place again and perhaps they would have done fine starting and staying at the same college for their full Bachelor’s degree program.

  Whether the student can remain living at home or must reside on campus is a major factor in choosing a college. This is no different for typically developing youth when they are making choices about where to attend school. Some colleges do have home-based support services that take place in the student dormitory. This could be tremendously helpful in teaching independent living skills, time management, and the opportunity for social interaction. The downside is that these types of programs are limited to students with ASD and do not truly integrate them into the general college population (VanBergeigk et al., 2008). More important in deciding on what type of school to attend, the family should evaluate how supportive the college or university is of students with disabilities. Asking about counseling services, modifications in the classroom, as well as social supports and opportunities for life skills education are important factors to consider. At this point in time, while most colleges are doing a fine job of making accommodations for learning disabilities and disorders such as ADHD, how to provide the myriad of support needed for ASD in and out of the classroom is largely unknown.

  A major difference for any student transitioning from high school to college is of conduct and requirements for passing courses, but they are not told what to do and how to go about it the way high school students are. Instructors do not give repeated reminders, send home notes, correspond with parents, or check up on students. For some college students, this new freedom gets the best of them and they will not succeed. They will either quickly figure it out, or fail and drop out of school. For students with autism spectrum disorder, it is not just about a newfound freedom. Navigating a college campus where you cross paths with hundreds if not thousands of other people with potential social situations may be too overwhelming. The help of a counselor can design a manageable schedule both for its work load, but also for proximity of classes, time of day around other needed routines, and living arrangements. The student must first learn how to be a self-advocate in understanding their disorder and conveying their needs to the disabilities office and to their instructors. An individual with a past diagnosis of Asperger’s or PDD-NOS may want to have a new evaluation under the DSM-5 (2013) so he or she can get appropriate accommodations and services at the college that would not have previously been recognized. This could present an issue in and of itself if a strong Asperger’s identity is established, the student is resistant to changing their label, or are in denial there is anything wrong.

  Adreon and Durocher (2007) recommend that students with ASD take a gradual approach, starting with just one academic class and if possible, take a life skills class. Many colleges have an orientation to college course, but these tend to focus on time management, learning about graduation requirements, and study skills. This type of course would be very helpful for students with ASD, who tend to have deficits in executive functioning and difficulty with goal directed behavior like organizing, planning, and self-monitoring. Colleges with stronger disability including learning about personal hygiene, proper dress, using the dining hall, and dealing with sensory issues in crowded or noisy environments (Adreon and Curocher, 2007). Regardless of knowing all that is needed for a successful transition for college students with ASD, the availability of these services across the country is not prepared to meet the demand of the burgeoning number of college-bound youth about to ascend the system (VanDergeijk et al., 2008).

  Conclusion The past 20 years has seen a surge in autism spectrum disorder and early identification and intervention has increased the number of students making it through high school eligible for college. The research to date has focused on early childhood development and interventions in the early years and little is known about the outcomes of adolescents and adults with ASD.

  Considering ASD overlaps or co-occurs with other disorders, such as attention deficit hyperactivity disorder, social anxiety, and depression, these individuals are at particular risk for not attending postsecondary education or not being successful if they do attend. Of the few studies on autism in the general college population, it appears there are even more people on the spectrum than are actually diagnosed, or at the very least exhibit the broader autism phenotype (White et al., 2011; Wei et al, 2012; Nevill and White, 2011). In acknowledging a strong correlation with these autistic traits and other psychological disorders, such as social anxiety and depression (Jobe and White, 2006; Freeth et al., 2013), it is possible a significant percent of the general college population would benefit from support services related to autism spectrum disorders. Additionally, of the numbers reported on postsecondary outcomes of youth with ASD (Shattuck et al., 2012; Wei et al., 2012), this growing population is not being served, do not community after high school. These are serious issues that need to be addressed in how to better serve this population to successfully transition to college, graduate, and gain employment in order to prepare them to be self-sufficient, well-adjusted, and meaningful contributors to society.

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