Harvard Review of Psychiatry:
Identifying the Unmet Needs of College Students on the Autism Spectrum
Pinder-Amaker, Stephanie PhD
From Harvard Medical School; Department of Psychology, McLean Hospital, Belmont, MA.
Original manuscript received 11 March 2013, accepted for publication subject to revision 11 April 2013; revised manuscript received 31 May 2013.
Correspondence: Stephanie Pinder-Amaker, PhD, McLean Hospital–Psychology, 115 Mill St., Belmont, MA 02478. Email: firstname.lastname@example.org
Abstract: The number of students entering college with high-functioning autism spectrum disorders (ASDs) is expected to surge in coming years. The diagnostic features and psychiatric risks of ASD, coupled with the transitions and stresses that define college life, present extraordinary challenges for these students, their parents, and institutions of higher education. This article applies a bioecological framework for conceptualizing the systemic strengths and barriers at the secondary and postsecondary levels of education in supporting students with ASD. This theoretical orientation is used to illustrate the importance of offering services and programs in a more coordinated and fluid manner within and between systems to support students more effectively. Evidence-based programs, practices, and interventions associated with successful academic and mental health outcomes for youth and young adults with ASD, as well as for college students with mental health and other challenges, are reviewed for their applicability to the target population. It is proposed that more fluid transitions and improved mental health and academic outcomes for college students with ASD can be achieved by integrating elements from secondary and postsecondary educational systems and also from existing, effective approaches with youth and young adults. Building upon the disjointed, but promising, evidence from youth, young adult, and college mental health literatures, recommendations for developing more effective transition plans for students with ASD are proposed.
Students diagnosed with autism spectrum disorders (ASDs) have been arriving on the nation’s college campuses with increased frequency during the past decade—a trend that is expected to continue.1,2 Propelling this surge, the proportion of children diagnosed with ASD in the United States has increased from 1 in 150 in the year 2000, to 1 in 88 in 2008.3 The largest increases within this time frame have been among Hispanic and African American children. The majority of children identified as having ASDs were not intellectually disabled (defined as having IQ scores lower than 70). The factors contributing to the increased prevalence of ASD include heightened public awareness, improved screening, changes in the diagnostic specification, and, notably, improved ability to recognize and diagnose higher-functioning individuals with ASD who may have been overlooked in the past.4
TERMINOLOGY AND DIAGNOSTIC FEATURES
ASDs are a class of complex neurodevelopmental disorders affecting social and communication skills, behavior, and sometimes cognitive development. Classified in the revised fourth edition of the Diagnostic and Statistical Manual of Mental Disorders5 as pervasive developmental disorders, diagnoses included autistic disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS). In the new, fifth edition of the manual, symptoms of ASD are marked by significant heterogeneity and fall along a spectrum ranging from mild to severe, with approximately 50% of individuals falling in the above-average range on intelligence tests.6 Evidence suggests that these children, sometimes referred to as having high-functioning ASD, may be the fastest growing sector of the autism population.7,8
Although intellectually capable of pursuing higher education, students with high-functioning ASD are likely to encounter an array of psychosocial challenges in the transition from high school to college.2 These difficulties may be compounded by core diagnostic features, including difficulty engaging in reciprocal social interaction and relationship development, problems maintaining conversation in social settings, perseverative or obsessive thought patterns, fixated or restricted behaviors and interests, and difficulty interpreting nonverbal cues or the perspective of others.9 Sperry and Meisbov10 identified additional hindrances as problems in behaving in age- and interpersonally appropriate ways with members of the opposite sex, and in developing a meaningful personal understanding of ASD. Moreover, the transition to college may also be exacerbated by dysregulation in visual, tactile, auditory, or other sensory modalities, difficulty processing or remembering oral instructions, fine-motor impairment, unusual movements or clumsiness, and emotional dysregulation. Collectively, the behavioral manifestation of these diagnostic and associated features may present formidable barriers to ASD students hoping to forge meaningful peer, work, and intimate relationships as part of their college experience.11
COMORBIDITY AND RISK
In neurotypically developing individuals, the traditional college years coincide with the peak period of onset of major psychiatric illnesses such as major depressive disorder, bipolar disorder, and schizophrenia. Twenty-two percent of adults who meet diagnostic criteria for one psychiatric illness will manifest a concurrent illness within 12 months.12 Alarmingly, this rate is doubled among ASD individuals.13–15 The most common comorbid conditions among ASD adolescents and adults are anxiety and depression, with rates as high as 65% reported among ASD individuals.16–20 In a sample of high-functioning adults with autism (n = 122), Hofvander and colleagues13 found that 80% met criteria for one or more Axis I diagnoses, including mood, anxiety, and psychotic disorders. The confluence of these variables suggests that ASD students are at even greater risk of developing psychopathology during college than their neurotypical peers. Moreover, when symptoms emerge, accessing appropriate psychiatric treatment will be critical to their mental health and continued pursuit of higher education. These risks may be further elevated among the growing number of African Americans with ASD—especially individuals from lower-income households, who are more likely to disengage from therapeutic services after leaving high school.21
Numerous factors may potentiate the onset of psychopathology among ASD students, and empirical and theoretical links have been drawn between the persistent skill deficits found in ASD individuals and their comorbid psychiatric conditions.2,22 It has been postulated that environmental rigidity and difficulty processing social information may precipitate increased anxiety; Seligman’s learned helplessness model has been used to explain how repeated failed attempts at social interaction, coupled with peer rejection and subsequent isolation, potentiate anxiety and depression in ASD individuals.22 The impact of peer rejection has been studied among children diagnosed with ASD and found to lead to depression, aggression, and even school dropout.23 Some studies suggest that sensory and social abnormalities, in addition to stressful experiences, may contribute to anxiety in ASD,24 and Kuusikko and colleagues25 found that reported social anxiety—especially fears of negative evaluation by others—increased with age in high-functioning ASD youth as compared to neurotypical controls. Self-awareness—in particular, understanding one’s social deficits—may be a potential moderator of social anxiety in ASD. Among ASD adolescents of average intelligence, Bellini26 found that youth’s perceptions of their social-skills deficits were predictive of social anxiety, whereas parents’ perceptions of those deficits were not. These findings suggest that personal understanding of social deficits may be more significant than actual social ability in predicting social anxiety. Cumulative findings suggest that social anxiety may develop from a combination of social awkwardness and social awareness in high-functioning ASD youth.24 Finally, increased stress experienced by ASD youth may create another pathway for increased anxiety risk. Among ASD adults, it has been reported that stress and anxiety levels were highly correlated, and Gilliott and Standen27 have suggested that individuals with ASD may possess a heightened vulnerability to the stressors associated with their disabilities—which underscores the risks inherent in navigating novel, complex, and unpredictable college campus environments.
The elevated risk for psychiatric illnesses among ASD students raises an important question. How similar are the experiences and needs of ASD college students with secondary mental health concerns to those of non-ASD students with primary psychiatric illnesses? The respective literatures of both groups reveal key parallels and differences that could shape how knowledge gained from one might be applied to the other. Both groups are enrolling in postsecondary schools in increasing numbers;28 both are at risk for withdrawing from college prior to completing their degrees;29–31 both are protected under the Americans with Disabilities Act (ADA) and, as such, are entitled to campus- and community-based accommodations and services;32 both have hidden disabilities, with the consequence that their symptoms and needs are not visible to roommates, faculty, and staff; both may need to navigate issues of perceived stigma and disclosure about their illnesses and to practice self-advocacy skills in order to acquire support needed for academic and personal success;33 both are increasingly enrolled in community colleges;34,35 and both have disabilities whose sequelae are correlated with poorer relationships with other students, faculty, and administrators, and with low levels of campus engagement and retention.33,36 Accordingly, evidence-driven recommendations are found in both literatures for developing interventions that reduce stigma, enhance social functioning and self-advocacy, and elevate campus engagement as paths to college success.33,37 Strengthening the transition from secondary to postsecondary school is a significant area of focus for professionals working with both populations, but coordination between the two school systems and evidence-based practices for doing so are lacking. The significant overlap in challenges, risks, and needs between the two populations suggests that both would benefit from the cross-fertilization of knowledge and practice. The heterogeneity of symptoms among college students with ASD, however—combined with their perseverative thought patterns and restricted interests, limited personal understanding of what it means to have an ASD, lower levels of social and romantic learning, and heightened difficulties with transitions and novel situations (plentiful on college campuses)—may require more individualized, directive, and methodical approaches.
TRANSITIONS AND STRESS
The empirical and anecdotal consensus is that periods of transition are especially challenging and stressful for ASD children. Accordingly, considerable attention has been given to preparing and supporting children, teachers, and families in the move from primary to middle school and from middle to secondary school.38–41Typical challenges for students with learning disabilities include difficulties with academic content, organization, time management, and study skills. At the postsecondary level, these difficulties are exacerbated by several issues, including proper identification of students in need of services, the hidden nature of the disability, students’ reluctance to disclose their disability, and larger class sizes with more limited teacher-student contact.42 Given the additional social, communication, and other deficits associated with ASD, college students with ASD will face these challenges and many more. The cumulative effect of such challenges for ASD students and their heightened vulnerability during the postsecondary transition period were among the findings of the National Longitudinal Transition Study 2’s investigation of postsecondary outcomes. In this ten-year prospective study of youth receiving special-education services in the United States, Shattuck and colleagues31 found that ASD youth had the highest risk of being completely disengaged from any kind of postsecondary education or employment and that for more than half of the study’s large national sample, this risk persisted for the first two years following high school.
Similarly, the transition from high school to college has been well documented as a period of marked stress among neurotypical adolescents, and the level of stress prior to college enrollment has been found to predict adjustment to college six months later.43 The American College Health Association National College Health Assessment reported that students identified stress (27.5%), anxiety (19.1%), and depression (11.9%) among the top six factors negatively affecting their academic growth.44 Common student stressors include concerns about academic achievement; developing peer and intimate relationships; increased exposure to alcohol and other substances; living away from home and from preexisting structure and support systems; financial pressure; and poor eating and sleeping habits. Parental conflicts may arise as students pursue greater autonomy and make decisions that may be incongruent with family-of-origin values and expectations, creating additional tension for neurotypical students transitioning from high school to college.45
Two additional concerns may be especially pertinent for ASD college students and likely to affect their transition, overall adjustment, and mental health. The first is the growing number of students who meet diagnostic criteria for ASD and enter college systems undiagnosed and consequently disconnected from disability services and other critical resources.46 In a study of the prevalence of, and associated psychiatric risks among, university students with symptoms of high-functioning ASD, White and colleagues46 found that none of the students who met diagnostic criteria formally for ASD had been previously diagnosed. Moreover, in this sample, symptoms of ASD were significantly correlated with symptoms of social anxiety, depression, and aggression. These students reported less satisfaction in college and in life overall despite performing better academically than their college peers matched for gender and college major. According to the authors, these findings demonstrate the importance of screening for autism-related impairment throughout institutions of higher education, particularly those that attract students with strengths in engineering, technology, and computer science, where ASD students may be disproportionately represented.47
A second concern is the sexual development and behavior of ASD individuals, which poses a unique challenge for students entering campus environments, where dating and sexual mores can be complex and variable. A growing body of literature focusing on the sexual development and behavior of ASD individuals has revealed that issues of sexuality are especially difficult for this population.2,48 In a study of sexual behavior in high-functioning male adolescents and young adults with autism (ages 12–21), about a third needed intervention regarding sexual development and behavior. The most common problems included a lack of hygiene, talking too frankly about sexuality, touching genitals in public, and masturbating in the presence of others.49 In a study of parental perspectives of their children’s sexuality, Stokes and Kaur50 surveyed parents of adolescents and preadolescents with and without ASD and found that the children with ASD had less knowledge of privacy issues, engaged in inappropriate behavior in public more often, had less sex education, and displayed more inappropriate behaviors such as touching others, touching self, and disrobing. A study of stalking, social, and romantic relationships among adolescents and adults found that those with ASD had lower levels of social and romantic learning, were more likely to engage in inappropriate courting behaviors, were more likely to focus attention on celebrities, strangers, colleagues and ex-partners, and pursued their targets for longer periods of time.51 Concurrently, the increased incidence and study of the crime of stalking behaviors on college campuses suggests that even neurotypical students have difficulty comprehending what constitutes stalking behavior and victimization.52 The fact that ASD individuals, who may be lacking crucial sexual education and skills, are transitioning to college at a time of heightened sensitivity to, and awareness of, stalking behavior and sexual misconduct on campuses may have devastating consequences for the mental health of all students.
HEALTH DISPARITIES AND ASD YOUTH
Documented socioeconomic, racial, and ethnic disparities among ASD youth present additional risks and barriers to service use, and the growing rate of African American and Hispanic children diagnosed with high-functioning ASD threatens to expand the existing racial gap in college student graduation.34 African American and Hispanic children of lower socioeconomic status receive an ASD diagnosis at significantly older ages than Caucasian children (7.9 and 8.8 years of age, respectively, vs. 6.3 years of age), and Caucasian children enter treatment services at earlier ages than the other two ethnic groups.53 The evidence of minority disproportionality in special education reveals that African American students with disabilities are only .71 times as likely to be served in general education settings as other students, and nearly three times as likely to be served in a classroom outside of general education, during 60% or more of the school day.54,55 Moreover, African American youth who leave high school prior to graduation are 3.31 times more likely than Caucasian youth to receive no services.21 Further population-based research is needed to examine the implications of race, ethnicity, culture, and socioeconomic status for post–secondary school educational pursuits;28,56 to unpack access barriers; to develop and evaluate equitable service-delivery models; and to promote access among underserved populations.21
Taken together, these factors suggest that ASD students are at a heightened risk for academic and personal failure during the college years. Despite the extensive research on youth with more severe forms of ASD, the group of higher-functioning students with ASD has received sparse attention in the child development and mental health literature. The impact of stress on ASD college students, for example, has yet to be investigated. More generally, the transition of youth with ASD, ages 16 to 21 years, into postsecondary education has received sparse attention,57 and the mental health literature has done little to understand and address the considerable needs of this college-bound population.2
BIOECOLOGICAL SYSTEMS THEORY, SECONDARY-SCHOOL SYSTEMS, AND STUDENTS WITH ASD
The rate of students with ASD who successfully graduate from high school has increased steadily since 1990.58 The bioecological systems theory of development59 may be used to illustrate how an array of interpersonal, educational, legal, medical, and cultural variables has led to significantly improved outcomes for ASD students in secondary school. According to the bioecological model, individual development reflects several environmental systems: the microsystem, mesosystem, exosystem, macrosystem, and chronosystem (Figure 1). The adolescent’s immediate environment—the microsystem—includes siblings, parents, teachers, and communities such as school, church, and neighborhood, and directly influences the adolescent’s academic and psychosocial development. The adolescent is both actively engaged in, and influenced by, the microsystem. Importantly, the adolescent’s own biology or neurology may be part of the microsystem, accounting for the influence of neurodevelopmental differences as seen in ASD individuals.
The next level, the mesosystem, captures how the components of the microsystem work together on behalf of the adolescent. For example, routine and effective communication between parents and teachers within the mesosystem will promote the adolescent’s overall growth and development. These aspects are nested within, and influenced by, the larger exosystem, which includes the school system, the health care and social welfare systems, community-based programs, and mass media. The exosystem components are especially likely to influence the adolescent’s development through their influence on peers, family, and high school community. Larger economic, political, and cultural factors, including societal awareness and ideologies, exist within the macrosystem and may be thought of as a societal blueprint for a particular culture or subculture. The chronosystem encompasses significant sociohistorical and environmental events as well as seminal, life-altering experiences. Within the bioecological framework, each system differentially influences an adolescent’s development, and the systems also affect each other in a bidirectional fashion. The collective influence dramatically shapes one’s perception of, access to, and utilization of academic, health, and community resources.45 Bioecological systems theory provides an especially useful heuristic for conceptualizing the roadmap by which increasing numbers of ASD students are navigating high school successfully and with postsecondary aspirations, and offers an urgently needed template for improving postsecondary education and mental health outcomes.
Noteworthy bioecological variables that have promoted positive outcomes in ASD children throughout primary and secondary school include the following: increased public awareness of the importance of early identification, which facilitates earlier occupational, speech, behavioral, and psychological interventions (macrosystem level);2 enactment of the Individuals with Disabilities Education Act of 1990, which provides a federal mandate to educate children with disabilities (exosystem level);60 changes in the diagnostic specifications for ASD (exosystem level); and use of well-designed individual education plans (IEPs), along with implementation of community-based targeted intervention programs (microsystem level). It is within the mesosystem, however, that factors facilitating success among secondary school ASD adolescents are most profoundly operationalized. It is here that parents, schools, and IEP teams routinely interact and communicate on behalf of students. Since the enactment of the Individuals with Disabilities Education Act, parents have been increasingly proactive and instrumental in negotiating with teachers and teams for effective IEPs and support services for their children. In an exemplary model of effective, comprehensive service delivery, parents, schools, and IEP teams engage in assessment, advocacy, programming, decision making, transition planning, and arrangement of accommodations to ensure that ASD students receive the support that they need in order to succeed.61
Many of the systemic pillars that promote success among high school students, including school-parent-team support and communication, advocacy, and mandated services, will be less attainable as these same students venture onto college campuses. Paradoxically, just when these mesosystem interventions are needed most—at this critical transitional juncture—these young adults will enter a period of increased autonomy. Many will move away from parents, routine, and supportive systems, and will need to assume responsibility for identifying and accessing resources in unfamiliar settings. Fragmented services across programs, the divide between child- and adult-serving professions, and undefined roles for parents further complicate the high school to college transition.
BIOECOLOGICAL SYSTEMS THEORY, POSTSECONDARY SCHOOL SYSTEMS, AND STUDENTS WITH ASD
Although several barriers to academic and psychosocial success have been identified for transitioning ASD college students, some ecosystem variables are well positioned to promote continued growth and development in postsecondary school. The central macrosystem variable is that of societal beliefs: it needs to be understood that students with disabilities are entitled to the supports required to maintain their place in institutions of higher education.57 This inclusive approach to postsecondary education is viewed by some as a natural extension of the movement for educational equity and integrated classrooms at the K–12 level.62 Among the benefits for ASD students are the correlation between college attendance and positive employment outcomes, the value of experiencing the coveted social role of “college student,” and the positive impact of high expectations on academic and social success.63,64 Moreover, the campus presence of ASD students has been found to benefit the broader campus community by reducing stigma, in relation to both faculty and the broader campus community.65–67
At the college exosystem level, key existing factors include (in addition to the increased media attention to growing opportunities for ASD students in postsecondary education),57 (1) amendment of the Americans with Disabilities Act (ADA) in 2008 to include protection for ASD students, (2) establishment of the Transition Programs for Students with Intellectual Disabilities (TPSID) program in 2010,68 and (3) a growing literature on supporting ASD college students.1,61,69 First, the ADA, a civil rights law originally enacted in 1990, provides guidelines for colleges and universities in providing services to ASD students. Whereas the Individuals with Disabilities Education Act seeks to ensure that students are successful in the K–12 system, the ADA seeks to ensure access to college and university systems. The ADA prohibits any public or private institution from discriminating against individuals with disabilities and requires that programs offered, including extracurricular activities, are accessible to students with disabilities through reasonable accommodations, practices, policies, and programming. The responsibility for success shifts from the institution to the student, however, at the postsecondary level, and schools vary considerably in the provision of services.36 This shift in responsibility presents notable challenges for ASD students, but the foundational legal protection is in place and, at least de facto, works in tandem with the growing incentive for colleges to be identified as “disability friendly.”70
Second, the Transition Programs for Students with Intellectual Disabilities initiative was established by the U.S. Department of Education in 2010 on 27 college campuses across the country (Table 1). These schools were awarded five-year federal grants to develop comprehensive programming for college students with cognitive disabilities, including ASD, enabling them to gain access to academic enrichment, social activities, employment training, and assistance in establishing an independent living environment.68
Third, the relevant educational literature has grown rapidly, as have workshops, guidelines, and programs that have built upon the contrast between high school and college to avert predictable pitfalls for ASD students, parents, and faculty.1,61,69 The impact of such efforts is apparent in the significant increase of individuals with disabilities enrolled in postsecondary educational institutions; the most recent statistics indicate an increase of more than 20% from 2003 to 2009.36,71 Despite the increased enrollment, however, the employment gap between college graduates with and without disabilities (one measure of college success) persists.71,72 Future research should examine whether youth with ASD who begin a degree-seeking postsecondary program attain that degree and whether having a postsecondary degree translates into sustainable employment.28
COLLEGE STUDENT MENTAL HEALTH ADVANCES AND IMPLICATIONS FOR STUDENTS WITH ASD
Importantly, the burgeoning college-bound ASD population is not navigating uncharted territory. Rather, these students are pursuing postsecondary education at a time when advances in college student mental health may offer additional ecosystem supports and inform future interventions for ASD students, their parents, and institutions of higher education. Indeed, many of the barriers identified for ASD students are shared by students with psychiatric illnesses who have been arriving on college campuses with increased frequency and complexity for decades,73–75 and whose colleges have, over time, developed the requisite support services. College student mental health research may therefore provide helpful insights to inform and promote successful mental health outcomes for ASD students.
The college mental health literature on help-seeking behavior represents an effort to understand and address barriers that prevent college students with mental health problems from seeking treatment. The factors identified include stigma, perceived need for help, social networks, and cultural competence of service providers.76 The salience of these microsystem variables for ASD students needs to be studied in order to counter their observed resistance to treatment. Certain groups of college students, for example, have cited mental health service providers' insensitivity to cultural issues, sexual identity, and sexual orientation as potential barriers to seeking treatment.77 It may be that ASD students have similar concerns regarding lack of sensitivity to, or knowledge of, disabilities among campus providers. Likewise, the perceived need, which strongly influences help-seeking behavior in neurotypical populations, may also influence such behavior among ASD students.76,78
Considerable research has evaluated the effectiveness of interventions designed to increase help-seeking behavior among college students.76,77 The approaches explored have been stigma reduction, mental health education, gatekeeper training, and screening-and-referral strategies.77 In anticipating the mental health needs of the growing ASD student population, the Internet-based programs for screening students in distress and for connecting them to services may be especially promising in view of the technological strengths of this at-risk student population. The American Foundation for Suicide Prevention’s Interactive Screening Program has demonstrated preliminary success in identifying students in distress and in linking them to appropriate services. This Internet-based program invites students to complete a brief online questionnaire concerning suicide risk factors, including symptoms of depression, alcohol and drug use, eating behaviors, and current psychiatric treatment. Students who score in the range of elevated risk for suicide receive a detailed and personalized invitation to an in-person evaluation with a counselor. Alternatively, students are given the option of engaging in continued online dialogue with a counselor to discuss additional concerns and options for seeking help. Studies have demonstrated that the interactive screening program has been successful at linking students to services if they advance to the stage of corresponding with the counselor, but only 8%–13% of students ever complete the initial screening process.79–81 This program has been implemented at 50 colleges and universities, and efforts are being made, as part of broader depression and suicide awareness programming, to improve student response rates by adjusting the timing and content of the emails. Future studies might assess whether the interactive screening program has a differential response rate for students on the autism spectrum.
Advances reflected in the college mental health suicide prevention literature may offer additional benefits for addressing the mental health challenges that incoming ASD college students will face. Efforts to bridge approaches relying on individual clinical intervention for preventing campus suicides and those relying on population-based, problem-solving strategies may help to address the mental health needs of undiagnosed ASD students who may be at risk. Whereas clinical-intervention approaches focus on screening and referring individual students experiencing suicidality, problem-solving approaches emphasize the campus ecosystem and aim to improve the overall health of the entire student population by strengthening resilience, coping, and self-management skills.61 The latter approach promotes campus-wide interventions that improve the well-being of all students, and prevents them from entering the suicidality continuum. Proactive, ecological, population-focused interventions may be especially effective for addressing the mental health needs of ASD students. As a whole, these interventions are primarily psychoeducational in nature, may be applied through academic programming, target students who may never access campus mental health services, and promote social connectedness through classroom structure, residence life, and even architectural design.82
EVIDENCE FOR SUCCESSFUL OUTCOMES AMONG COLLEGE STUDENTS WITH ASD
While clinical, educational, and familial supports have been shown to contribute to the successful completion of high school,83 the supports needed to sustain success as these youth transition into college have not been systematically examined. The literature has only recently begun to identify the specific needs of ASD college students and to propose appropriate accommodations, models, and recommendations for supporting their postsecondary educational and personal aspirations. As such, the impact of these interventions has yet to be empirically confirmed. Although fragmented, the current evidence base suggests that particular approaches may be especially effective in supporting ASD students and, more generally, students with disabilities. If these preliminary results are confirmed with respect to ASD students, the approaches in question should be integrated into a more comprehensive model to address the complex needs of this diverse, vulnerable, and rapidly growing segment of the college student population.
A national survey of chief academic officers at community colleges examined best practices for improving recruitment and retention rates of “at risk” students, including minority students, first-generation students, and students with disabilities.84 Promising evidence-based practices for retention included the use of targeted interventions for specific student populations; easing the transition of students to the college environment; building self-advocacy skills; and facilitating the education of students with undiagnosed learning disabilities by using a Universal Design for Learning framework.85 This framework promotes the use of flexible teaching approaches that can be adapted to fit individual student needs. Several community colleges have documented successful student outcomes through the use of summer orientation or bridge programs, first-year seminars, and early-warning systems.84 Findings from this national survey of community colleges are especially relevant for shaping future efforts, especially given the growing role of these institutions in educating at-risk students with disabilities who are of color or low socioeconomic status.31,35,86
In an exploratory study of factors that influence successful degree completion among students with a wide range of cognitive, emotional, and physical disabilities, numerous promising practices and hypotheses for further testing were identified.33 Interviews of 20 successful college completers with disabilities, along with surveys of their colleges’ Office of Disability/Special Services professionals, revealed both student and college perspectives regarding what was helpful and why. Although students overwhelmingly attributed their successful completion to a significant relationship with Disability Services staff or with faculty members, they also possessed observable personal qualities that allowed them to pursue, develop, and maintain positive, long-term relationships with mentors. Participants also attributed their success to family members, campus-based testing and tutoring centers, accommodations, and personal motivation. Successful students were able to understand their disabilities and to advocate for accommodations—skills that are associated with successful outcomes in both schools and employment.87 Contrary to what might be expected, both students and staff reported minimal use of external campus resources such as state vocational rehabilitation services. These findings underscore the value of social skills for forming campus relationships that are critical for student success, and provide rare insight into the personal attributes of successful college students with disabilities.
Multisystemic therapy (MST), a set of interventions based on Bronfenbrenner’s theoretical orientation, was specifically developed to provide scientifically validated, cost-effective, community-based treatment options for youth with serious behavior disorders and for their families.88 MST interventions involve any one or a combination of the interconnected ecological systems that encompass individual, family, peer, school/vocational, and neighborhood/community factors. As the most extensively researched intensive family and community-based treatment,89 MST has been used to successfully treat a variety of conditions in youth, including antisocial behavior,90 abuse and neglect,91 psychiatric disorders,92 and poorly controlled diabetes.93 Although MST has not yet been applied to young adults, the program’s cost-effectiveness, proven success in treating psychiatric and challenging clinical populations, and relative ease of implementation across geographic locations and community agencies90 may be well suited for application and study among college students with disabilities.
Video modeling, an intervention with extensive empirical evidence for improving social skills in youth with ASD,94 has been shown to have improved the communicative social skills of two college students with Asperger’s disorder.95 This study demonstrated that video modeling alone, without other interventions, is a convenient, time-saving, inexpensive, and effective social-skills intervention. The authors suggest that additional research is needed to assess the generalization of the results across people, settings, and other social behaviors relevant to college students such as classroom participation, cultivating romantic relationships, and developing and maintaining social connections. The authors recommend the exploration of alternative delivery modalities that might appeal to young adults, such as iPads, iPhones, and the Internet. These findings offer a promising treatment component for addressing the unique needs of college students with ASD in a manner that is conducive to diverse campus settings.95 Moreover, the intervention specifically targets communicative and social skills—skill sets that are central to college success.94,95
The Transition to Independence Process model41 provides a multisystemic framework with specific guidelines for supporting the personal goals of youth (ages 14–25) as they transition to adulthood. Using a team approach, key personnel at all levels of the adolescent’s system deliver coordinated, nonstigmatizing, developmentally appropriate services and support through an individualized process.41 This model is the only evidence-supported practice that has been shown to be effective in improving the outcomes of youth and young adults with emotional and behavioral deficits.96–100 Across five transition domains of (1) employment/career, (2) education, (3) living situation, (4) effectiveness/well-being, and (5) community-life functioning, this transition program is designed to provide support in a more integrated and seamless manner than in traditional child-serving and adult-serving programs. Several components of the model might be adapted for ASD students. Its focus on youth-adult transitions, coupled with its individualized design, coordinated team support across systems, emphasis on relationship and social-skills development, and provision for the use of other evidence-based clinical interventions (including cognitive-behavioral therapy and dialectical behavioral therapy), is well suited to the specific needs of college students with ASD. Moreover, the five transition domains correspond to college campus living/learning settings.
BLENDING ECOSYSTEMS: A TRANSITION PLAN OF THE FUTURE
Ideally, the “transition plan of the future” would retain the optimal, evidence-based practices of both the secondary and postsecondary systems; formulate adjustments when needed; integrate them into a new, coordinated model; and measure academic and psychological outcomes to determine its effectiveness. The seamless functioning of the mesosystem in the secondary school system for ASD students, for example, would become the centerpiece of the support structure within the postsecondary educational system. Again, it is within this particular realm that those who interact daily with the student are also communicating with each other for the purpose of supporting the student’s personal and academic growth. For developmental, psychological, and legal reasons, the school-parent-team network cannot and should not be replicated in college. However, the intentional transfer and adaptation of these roles would facilitate more fluid secondary-to-postsecondary school transitions for ASD students. One method for conceptualizing this transfer of roles would be to determine the following: who are the logical counterparts within the postsecondary educational system, and what functions might they serve? Given the vast heterogeneity of ASD students and the diversity of institutions of higher education, no universal, “one-size-fits-all” solution is available. Rather, an effective transition plan would consider all of these variables and be flexible in its design.
In The Parent’s Guide to College for Students on the Autism Spectrum, Brown and colleagues61 depict various roles and responsibilities (e.g., advocacy, assessment, decision making, and arranging accommodations) as shifting from a school-parent-IEP team at the secondary level to (primarily) the student himself or herself at the postsecondary level. A blended ecosystem transition plan would introduce new, developmentally appropriate roles, constructs, and resources at both levels. At the secondary level, for example, the role of “student-in-training” would be introduced into the mesosystem during ninth grade. The student-in-training would be an active participant in the school-parent-team process and—using role playing, coaching, and rehearsal—would gradually assume greater responsibility as secondary school progresses. Through dual-enrollment opportunities during the junior and senior years of high school, the student-in-training would be able to practice the role at a local institution of higher learning.
Students-in-training would be taught to utilize their well-developed IEPs as a template for the individualization of services at the college level and would be actively engaged in their own future planning.2,41 Building upon the relative strengths and weaknesses identified in the IEPs, students would learn to reshape the IEPs into individualized college plans (ICPs), a term originally coined by VanBergeijk, Klin, and Volkmar.2 They recommend that the ICP should delineate academic modifications, independent-living skills, socialization skills and goals, vocational goals, and mental health supports. As with the IEP, the ICP would be supported by team members to be selected, and to be met by the student, prior to the start of the first college semester. Core ICP team members might include a disability services professional, peer-mentor, college coach, faculty member or academic adviser, campus or community-based mental health provider, and a parent-in-waiting (who was previously engaged in the role of “parent” under the IEP but who gradually takes a back seat to the student, who assumes greater responsibility). Collectively, the ICP team members would help to provide, in addition to traditional academic support, the modifications in the social, organizational, and communicative realms that students on the autism spectrum require. ICP team members would be trained to adhere to the guidelines of the transition-to-independence process and its five (slightly modified) domains of functioning.
The title of the role parent-in-waiting intentionally suggests that parents are not abruptly absolved of their responsibility when a student transitions to college; instead, they gradually transfer onus and authority to the student and the newly designated ICP team members. Further, the parents’ engagement would be permitted to fluctuate during subsequent transitions in the student’s life (e.g., changing residence halls or roommates, beginning a new semester). This flexible parent-in-waiting role would be essential for the seamless transition to college and would necessitate proper, signed consent forms for optimal communication among team members. Table 2 depicts an expanded version of Brown and colleagues’ original chart,45,61 in which additional roles and constructs have been highlighted.
For any mental health provider who is a member of the student’s ICP team, the focus of counseling should not be insight oriented. ASD students will not easily grasp this therapeutic approach, and it should never be assumed that ASD students can generalize learned strategies across situations. Instead, counselors should offer psychoeducation, be directive and explicit in their guidance, and teach skills in a “rote fashion using a parts-to-whole teaching approach” in which “the verbal steps are in the correct sequence for the behavior to be effective.”101 Klin and Volkmar102 recommend explicit instruction with homework, role playing, and coaching. Chain analysis,103 a cognitive-behavioral skills strategy that teaches individuals to identify the origin of problematic thoughts and behaviors and to intervene according, would be especially well suited for ASD students. Multisystemic therapy, although not yet applied to young adults, might be considered as a cost-effective and easy-to-implement approach when intervention is needed throughout the students’ interconnected ecological systems.
The transition plan of the future would incorporate a diagnostically mixed, campus-based, summer transition experience (Table 2). As recommended throughout the autism literature, students would be taught behavioral skills and strategies across multiple campus settings, including classrooms, residences, and dining halls. Any such summer program should, however, also actively recruit all students with disabilities, including those with preexisting psychiatric illnesses. Identification of at-risk students would be enhanced through closer IEP and ICP team collaboration and through college-based interactive screening programs. All students would participate in biweekly, psychoeducational group sessions focusing on cognitive-behavioral skills and with at least the following modules: what it means to have an ASD or mental illness; managing stigma; navigating campus resources; self-advocacy; navigating campus relationships; private and public accommodations; selective disclosure; the role of parents-in-waiting; developing your ICP; and sex education, intimacy, and stalking in the age of social media. The group modules would be didactic and directive, and include pre-and post-tests, homework assignments, and role playing. Between group sessions, students would be encouraged to practice skills in multiple campus settings/domains, to utilize video modeling for strengthening social-skills development, and to consult with ICP team members for feedback and support when needed. The diagnostically diverse group membership would promote inclusion, social-skills development, interaction with multiple student groups with hidden disabilities, and peer acceptance.65
To be clear, this transition plan of the future—as described—does not yet exist. And although certain components are empirically supported, several of the proposed interventions still need to be evaluated for their impact on mental health and academic outcomes among college students with ASD. Given the paucity of research on the predictors of success among college students with disabilities,104 integrating evidence-based elements would obviously be an important step in moving interventions ahead most quickly and effectively.
Integrating the existing strengths of the support systems for high school students with ASD and college students with mental illness may ultimately serve to (1) highlight opportunities for cross-fertilization of best practices, (2) facilitate more seamless transitions between secondary and postsecondary schools, (3) improve mental health, retention, and academic outcomes, and (4) result in more positive college experiences for both ASD students and those with other forms of mental illness. It is hoped that colleges will embrace the growing number of ASD students as an opportunity to integrate the best of developmental, young adult, and college student mental health approaches.
Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the article.
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Asperger’s disorder; college student mental health; ecological systems theory; high-functioning autism spectrum disorder; postsecondary education; secondary education
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