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J Autism Dev Disord

DOI 10.1007/s10803-017-3236-8

ORIGINAL PAPER

Development of a College Transition and Support Program


for Students with Autism Spectrum Disorder
Susan W. White1 · Rebecca Elias1 · Nicole N. Capriola‑Hall1 · Isaac C. Smith1 ·
Caitlin M. Conner1 · Susan B. Asselin2 · Patricia Howlin3 · Elizabeth E. Getzel4 ·
Carla A. Mazefsky5

© Springer Science+Business Media, LLC 2017

Abstract Empirically based, consumer-informed pro- Introduction


gramming to support students with Autism Spectrum Dis-
order (ASD) transitioning to college is needed. Informed by The number of adolescents and young adults diagnosed
theory and research, the Stepped Transition in Education with autism spectrum disorder (ASD) who are either col-
Program for Students with ASD (STEPS) was developed lege-bound or enrolled in college is on a steep upward tra-
to address this need. The first level (Step 1) supports high jectory (White et al. 2011). Of the disabilities covered by
school students and the second level (Step 2) is for post- the Individuals with Disabilities Education Act (IDEA,
secondary students with ASD. Herein, we review the extant 2004), autism has been the fastest growing in terms of the
research on transition supports for emerging adults with percentage of children served (US DOE 2017). Recent
ASD and describe the development of STEPS, including estimates indicate that the majority of people with ASD
its theoretical basis and how it was informed by consumer do not have co-occurring intellectual disability (Chris-
input. The impact of STEPS on promotion of successful tensen 2016). Unfortunately, young adults with ASD are
transition into college and positive outcomes for students less likely to enroll in college (2- or 4-year) than are peo-
during higher education is currently being evaluated in a ple with other types of disabilities, such as speech/language
randomized controlled trial. impairments and specific learning disabilities (Wei et al.
2013). Research on the postsecondary outcomes of indi-
Keywords Autism · College · Transition · Adult viduals with ASD appears to be concordant in the United
States and in Europe (Karola et al. 2016; Newman et al.
2011). Programs that promote successful transition into
postsecondary education may improve college enrollment
and graduation outcomes for young adults with ASD.
Students with special needs, including those with ASD,
in the United States cease to be supported under the aus-
* Susan W. White pices of IDEA upon exiting secondary education or reach-
sww@vt.edu
ing 21 years of age (IDEA, 2004). Special education ser-
1
Department of Psychology, Child Study Center, Virginia vices are provided by schools under IDEA to students who
Tech, 460 Turner St., Blacksburg, VA 24060, USA need accommodations in order to receive a free and appro-
2
School of Education, Virginia Tech, Blacksburg, VA, USA priate education that meets their individual needs. The stu-
3
Institute of Psychiatry, Psychology and Neuroscience,
dent need not self-advocate for these services, although
King’s College London, Brain and Mind Centre, University often the student’s parents appeal for certain types of ser-
of Sydney, Camperdown, Australia vices. To continue to receive academic or related services
4
Center on Transition Innovations, Virginia Commonwealth from their postsecondary institution under the Americans
University, Richmond, VA, USA with Disabilities Act (ADA), students themselves (once of
5
Department of Psychiatry, University of Pittsburgh, legal adult age) must disclose their disability, self-advo-
Pittsburgh, PA, USA cate, and provide necessary documentation regarding their

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J Autism Dev Disord

disability. This transition to an advocacy-based approach Wehmeyer and Palmer 2003). Knowledge about one’s dis-
has proven challenging for many people with ASD, who ability, as well as its associated strengths and difficulties,
are less likely than students with other types of disabilities is critical to SD (Hitchings et al. 2001; Webster 2004). To
to take leadership of their own transition planning (Shogren target SD, STEPS focuses on building self-knowledge (e.g.,
and Plotner 2012). Per the ADA, however, many students about ASD, challenges in college), self-advocacy, and goal-
who have disclosed a disability to educational support staff directed behavior.
are entitled to accommodations which allow for access of Self-regulation (SR) is a multifaceted construct that
educational material. involves monitoring, oversight, and modulation of behav-
Among adolescents with ASD, both transition plan- ior, emotion, and cognition (Baumeister et al. 2007; Karoly
ning participation and identifying a transition goal of col- 1993). SR is closely related to executive functioning capac-
lege enrollment while still in high school is associated ity (e.g., one’s ability to update and monitor information,
with increased odds of attending a postsecondary insti- inhibit prepotent responses; Bridgett et al. 2013) and abil-
tution (Wei et al. 2016). Integrating perceptions of adult- ity to regulate one’s emotions, or adapt and modify one’s
hood and identity development at the high school level emotional response in the service of identified goals (i.e.,
could also work to address postsecondary expectations and goal-directed behavior; Bridgett et al. 2013; Thompson
overall outcomes (Anderson et al. 2015). Programming to 1994). Problems with SR, including executive function and
promote smooth transition from high school to postsecond- emotion regulation impairments, are commonly ascribed
ary education may prove critical in the prevention of a host to individuals with ASD (Corbett et al. 2009; Hewitt 2011;
of adverse outcomes as well as promotion of success in Mazefsky and White 2013). These deficits can be related
college. to a host of problems such as inflexibility in routines, poor
To receive accommodations once enrolled in college, inhibitory control and time management, amotivation or
students typically must register with their disability sup- impaired goal-directed behavior (e.g., Jahromi et al. 2009).
port office and disclose their disability. Students who dis- In STEPS, SR is targeted in several ways including teach-
close their disability before the end of their first year in ing effective stress management techniques, training in
college have been found more likely to graduate college problem-solving and goal-setting, and outings (practices)
than students who disclose later during their college ten- related to the student’s identified goals.
ure (Hudson 2013). Once registered for supports or accom- A bottom-up, multi-method approach was taken to create
modations, support staff must determine how to best meet a developmentally sensitive transition program that would
the needs of the student. Though limited, research suggests support students with ASD both prior to and during the
that the profile of challenges and needs that students with transition into college. To understand the challenges faced
ASD face is fairly unique, at least in relation to students by postsecondary students with ASD and those contemplat-
with ADHD (Elias and White 2017). This finding suggests ing high school graduation and matriculation into college,
a need for ASD-specific transition programming. four separate studies were undertaken (Duke et al. 2013;
Herein, we describe the development and content of a Elias and White 2017; Elias et al. 2017; White et al. 2016a)
transition program designed specifically for students with to ensure that the final program addressed consumer-per-
ASD. The program itself is both theoretically informed and ceived needs. Such a participatory process approach is crit-
empirically based. The goal of the program is two-fold: to ical to the development of programs to promote consumer
promote successful transition into postsecondary education utility and, ultimately, dissemination and adoption (e.g.,
and to improve the postsecondary school experience for Chambers et al. 2007).
students who have already matriculated. Following a preliminary focus group with college
students with ASD and consultation with experts in the
field of adult ASD and transition (Duke et al. 2013),
Development of the STEPS Program the preliminary version of the transition support pro-
gram was developed and piloted in a small group of col-
The Stepped Transition in Education Program for Students lege students (n = 6). Results from that pilot study were
with ASD (STEPS) is theoretically based and consumer- promising in terms of feasibility of implementation and
informed. Conceptually, the mechanisms of action are acceptability to the students (White et al. 2016b). Sub-
improved self-regulation and self-determination. Self-deter- sequently, White and colleagues (2016a) used a mixed
mination (SD), or the ability to identify and achieve one’s methods approach involving a nationwide online survey
own set goals (Field and Hoffman 1994), has been found and in-person focus groups with three stakeholder groups
to predict better post-school outcomes in typically develop- (students with ASD, parents of students with ASD, and
ing individuals as well as among students with other dis- educators and school personnel), the results of which
abilities (e.g., Chambers et al. 2007; Deci and Ryan 2002; indicated fairly high convergence in identified challenges

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across the stakeholders. The most commonly identi- STEPS: Overview and Content
fied needs were in the domains of interpersonal compe-
tence, ability to manage competing demands in college, STEPS targets SD and SR, which are hypothesized to medi-
and poor emotional regulation (White et al. 2016b). The ate positive outcomes such as college adjustment, academic
third study included a series of focus groups with both performance, and healthy independent living. STEPS is
secondary and postsecondary educators, results of which comprised of two separate, distinct levels to match the stu-
revealed themes of competence, autonomy and independ- dent’s particular needs in relation to transition to higher
ence, and development of interpersonal relationships as education (see Fig. 1). Step 1 is for students currently in
the primary areas of difficulty faced by college students secondary school who are either planning for transition to
with ASD (Elias et al. 2017). college, or unsure of plans after secondary school. Step 2 is
Subsequent to the pilot study (White et al. 2016a), for currently enrolled college students, and those who have
the modified version of the STEPS program was shared exited secondary school but have not yet matriculated into
with an expert consultant panel comprised of clinical postsecondary education. The two steps are independent; in
scientists and educators in the fields of postsecondary other words, the program was not designed such that stu-
academic accommodations for students with disabili- dents must complete Step 1 prior to Step 2, although that
ties, ASD in adulthood and its assessment, and treat- can happen. STEPS is individualized and person-centered.
ment development. These consultants provided feedback There are core content modules for each these curricula
on the content areas covered and delivery modifications (see Table 1), but implementation is flexible so that the
to optimize acceptability to the students, as well as the program can be individualized to the student’s interests,
assessment procedures and study design. We also sought challenges, and goals. STEPS adopts a cognitive-behavio-
feedback on the program from parents and students with ral approach to helping students develop SD and SR skills
ASD, to gain additional insight that would inform refine- and make progress toward their transition goals. Comple-
ment of the curriculum. These end-users offered practi- tion takes 12–16 weeks, or the length of a typical academic
cal suggestions, such as helping students in secondary semester.
school consider the possible benefits of a 2-year college
prior to attending university away from home, address- Step 1
ing fears related to talking to people in authority in order
to encourage self-advocacy, and openness to receiving The curriculum of STEP 1 involves active collaboration
technological support (e.g., apps) to improve skills. They across stakeholders (i.e., students, parents, school person-
also provided valuable insight into non-specific factors nel) throughout the program. The parent and student, upon
that can affect a student’s ability to feel empowered to entry into the program, identify a staff member at the stu-
self-advocate, such as ability to trust others’ intentions dent’s school who can assist the student (e.g., encourage
and limited experience in identifying supportive people participation in planning meetings at school) throughout
(allies) in a new environment. STEPS. This is often a special education teacher, a general

Fig. 1  Schemata of the content


foci of Step 1 and Step 2

Step 2
Facilitate transion
Social integraon
Life skills coaching
Idenfying and securing
appropriate services, accommodaons

Step 1
Readiness assessment
Psychoeducaon
Idenfy deficits for remediaon
Family-centered decision-making

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Table 1  Content by modality Counseling sessions Corresponding online content School personnel in-services (2)
across Step 1 and Step 2
Step 1
Planning and goal setting; Identifying services ASD overview
determine readiness for college Promoting independence Addressing social difficulties
transition School-family communication Common challenges of students
Learn about college expectations, Self-advocating with ASD
supports, services Tools for success Easing transition
Identify areas to work on, chal- Transition involvement Post-secondary options
lenges related to transition Transition planning Preparing students
Identify strategies to improve Promoting student involvement
deficit areas in transition planning
Practice self-advocacy and inde- Understanding postsecondary
pendent decision-making resources
Student rights and responsibilities
*Immersion experience
Step 2
Planning and goal setting College tools for success N/A
Goals and challenges clarification Identifying services
Acceptance and change Involvement in college
Independent adulthood Promoting independence
Problem-solving I School-family communication
Problem-solving II Self-advocacy
Meeting new people
Increasing cognitive flexibility
Healthy stress management
Emotion regulation I
Emotion regulation II
Planning ahead

*Not within a sessions; immersion experience is separate activity

education teacher, or a case manager. All three stakeholders campus, linking to STEPS content, at spaced intervals
play critical and interdependent roles as part of the STEPS throughout the day. During the immersion experience, the
program. Developed for students who are at least 16 years counselor coaches the student on skills related to behavio-
of age, most Step 1 participants are in their last 2 years of ral and emotion regulation (e.g., reviewing a class syllabus
secondary school. and discussing time management relative to the demands)
There are six counseling sessions, which are held and self-advocacy (e.g., asking questions during meetings
approximately every other week. Stakeholder participation with instructors and disability staff).
in meetings is based on session content, with varying group Prior to assisting a student, school personnel attend two
composition (i.e., student only, student-parent, or student, half-day training sessions (in-services) on supporting stu-
parent, and school personnel) throughout the six sessions. dents with ASD during transition. These sessions are pri-
The student is assigned activities (homework) to complete marily didactic in nature, but offer ample time for question
related to transition goals and, in between sessions, the and discussion. In addition to the content, case examples
counselor has regular check-ins to monitor progress toward and small group activities are used to encourage dialogue
goals and completion of practice assignments. In addition and active learning.
to the six sessions in the clinic or at their current school,
students take part in an immersion experience at either a Step 2
2- or 4-year postsecondary institution, depending on where
they plan to matriculate post-graduation. During this Students in Step 2 receive one-on-one counseling (12–13
immersion experience, which is coordinated and led by the sessions), community-based outings (practices), and online
counselor, students and their parents first tour campus, and content over a 12 to 16-week period. The counselor acts
then the student (usually without the parent but with the aid as a ‘coach’ throughout the program, having regular con-
of the counselor, to promote independence) meets with the tact via calls, texts, or emails outside of sessions with the
college’s disability support office, attends a college class, student to try to ensure continued work toward the identi-
and eats lunch in a campus dining facility. Counselors fied goals (e.g., ensuring student is studying for upcoming
also present specific didactics relating to life on a college exam). The student’s parent/caregiver and school personnel,

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J Autism Dev Disord

if one is identified, also have access to the online content Conclusion


(Table 1), but they do not attend counseling sessions. Simi-
lar to Step 1, there is flexibility within the manual to indi- Despite a growing population of college-bound and college-
vidualize the program for the student. Whilst building SD enrolled students with ASD, there is very little research on
and SR, individualized goals are identified, for example, how to best support their academic and social success. It
training in skills for independent living (e.g., finding part- is critical that we address this gap, as it is clear that young
time employment, managing finances, getting along with adults with ASD who do not have co-occurring intellectual
room-mates). impairments face a host of adverse consequences related to
Whereas parent and school personnel are actively under-employment (Engström et al. 2003), poor quality of
involved in Step 1, this is less so for Step 2, in order to be life (van Heijst and Geurts 2015), and skill loss and inad-
more developmentally sensitive to the young adults (col- equate services (Taylor and Seltzer 2011) as they transition
lege students) and promote their independence. Addition- out of secondary education. STEPS was developed as a
ally, college students rarely have a single person in the developmentally sensitive, multi-component curriculum to
college environment to serve as their identified school per- promote successful transition into, and during, postsecond-
sonnel; rather, they work with several support staff or coun- ary education.
selors as well as multiple instructors. Typically, the parent STEPS is novel in both in its focus on promoting college
and school personnel receive curriculum content solely via success for students with ASD as well as its development.
the online modules, unless the student participant opts to There is evidence that participatory research is critical to
have greater involvement of them in the curriculum. overcoming health care disparities for people with ASD
Step 2 targets SD and SR with a focus on social inte- (e.g., Nicolaidis et al. 2011), yet there has been minimal
gration within the campus. The purpose of the commu- research to inform transition support services. A participa-
nity-based practice outings is typically to encourage social tory process approach was employed to develop STEPS in
involvement that is goal-directed. As such, outings are order to optimize the usability and effectiveness of the final
completely individualized. For example, counselors might program. It is also important that intervention and transition
accompany the student to the first meeting of a social programs target identified mechanisms and have clearly
group, help the student get across campus between classes, documented procedures (i.e., manuals) for cross-site repli-
try a new dining hall, or compose emails to professors. cability and future dissemination. However, given the inter-
personal variability that characterizes ASD (e.g., Hewitt
2011), it is equally critical that programs allow flexibility
Feasibility: Preliminary Data and individualization to meet student’s unique needs. The
STEPS curriculum is the product of a consumer-driven,
STEPS is currently being evaluated in a randomized con- feedback-responsive development approach that seeks to
trolled trial (RCT), with participants assigned to either balance the benefits of manualization with the necessity of
STEPS or ‘transition as usual’ (TAU), after which time personalization. This program is currently being evaluated
they can enroll ‘open-label’ into STEPS. Although still in the context of a randomized controlled trial with second-
enrolling, across both phases (Steps 1 and 2), reported sat- ary and postsecondary students with ASD.
isfaction thus far is quite high. Upon program completion, Ultimately, if such programming is successful in achiev-
students and parents completed satisfaction ratings, with all ing these objectives, it will empower students with ASD to
items scored on a 5-point scale (1 = not helpful, not likely; achieve greater independence and higher quality of life, as
5 = very helpful, very likely). Of a total of 26 students thus well as contribute fully to society, economically and oth-
far (Step 1, n = 12; Step 2, n = 14), students reported that erwise. Additionally, it is likely that programming that is
they found the program helpful (M = 4.31, SD = 0.79) and informed by the preferences of the end-users and the needs
indicated they would likely recommend STEPS to oth- of consumers will be more sustainable as well as impactful.
ers (M = 4.38, SD = 0.70). Similarly, parents reported that
they found the program helpful (M = 4.39, SD = 1.03) and Funding This study was funded by the National Institute of Mental
would likely recommend the program to others (M = 4.78, Health (R34MH104337).
SD = 0.60). Qualitative feedback from program satisfac-
Author Contributions SW conceived of the study, led develop-
tion questionnaires was similarly positive. One Step 1 stu- ment of STEPS, oversaw the evaluation study, and led writing of this
dent reported that the program “got [him] thinking about manuscript. RE, NC, IS, and CC participated in evaluation of STEPS
important tasks for ‘daily living’ when at college.” A Step and implementation of the program, and provided input on program
development. SA, EG, PH, and CM provided consultation on develop-
2 student reported, “[STEPS] helped me acknowledge and
ment of STEPS and the conduct of the RCT. All authors contributed
validate my feelings. It also helped me achieve some of my to the present manuscript.
goals.”

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Compliance with Ethical Standards Field, S., & Hoffman, A. (1994). Development of a model for self-
determination. Career Development for Exceptional Individuals,
17, 159–169.
Conflict of interest The authors report no potential conflicts of in-
Hewitt, L. E. (2011). Perspectives on support needs of individu-
terest.
als with autism spectrum disorders: Transition to college. Top-
ics in Language Disorders, 31(3), 273–285. doi:10.1097/
Ethical Approval All procedures performed in studies involving
TLD.0b013e318227fd19.
human participants were in accordance with the ethical standards of
Hitchings, W. E., Lusso, D. A., Ristow, R., Horvath, M., Retish, P.,
the institutional and/or national research committee and with the 1964
& Tanners, A. (2001). The career development needs of college
Helsinki declaration and its later amendments or comparable ethical
students with learning disabilities: In their own words. Learning
standards.
Disabilities Research and Practice, 16, 8–17.
Hudson, R. L. (2013). The effect of disability disclosure on the gradu-
Informed Consent Informed consent was obtained prior to data col- ation rates of college students with disabilities. Unpublished
lection. doctoral dissertation. Virginia Tech, Virginia.
Individuals with Disabilities Education Improvement Act of 2004,
P.L. 108–446, 20 U.S.C. $ 1400 et seq.
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M. G., McDougle, C. J., … Posey, D. J. (2009). Positive effects
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