Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs

Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs

ORIGINAL PAPER

Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs

Nicholas W. Gelbar • Isaac Smith • Brian Reichow

Published online: 11 May 2014

� Springer Science+Business Media New York 2014

Abstract The increase in the number of higher-func-

tioning individuals with autism spectrum disorders (ASD)

is likely to lead to an increased interest in postsecondary

opportunities including degree-granting college and uni-

versity programs. To provide an understanding of the

current evidence-base for supporting individuals with ASD

in higher education, this article reports the results of a

systematic review of the literature concerning college

students with ASD. Overall, 20 articles describing 69

individuals met the inclusion criteria. This small number of

articles and participants indicates the scarcity of research

on this topic and only two of these studies were experi-

mental in nature. These studies described a video-self

modeling intervention and a counseling intervention

respectively. Eighteen ‘‘case studies’’ were also present in

the literature that described difficulties ranging from anx-

iety to housing concerns. This review deliniates the limi-

tation of our understanding of effective college

programming for individuals with ASD.

Keywords Autism spectrum disorder � ASD � Asperger � College � University

Introduction

Autism spectrum disorders (ASD) are a family of complex

neurodevelopmental disorders characterized by behavioral

symptoms in two broad domains: difficulties with social

communication and the presence of restricted and/or

repetitive behaviors (American Psychiatric Association

2013). Overall, ASD affects 1 out of 88 people (CDC 2012)

and this prevalence rate indicates an significant increase in

the number of individuals diagnosed with ASD over the

past 10 years (Schieve et al. 2012; Volkmar et al. 2004).

Many factors have contributed to the increasing prevalence

rates of ASD including an increase in the number of

individuals who are described as higher-functioning (CDC

2012). However, although individuals might be described

as higher-functioning, the developmental trajectory of each

individual is unique and the severity of symptom presen-

tation may vary over time (Eaves and Ho 2008; Fein et al.

2013).

While the number of higher-functioning individuals

with ASD is increasing, most of the research has focused

on individuals who are lower-functioning (Van Bergeijk

et al. 2008) and younger children (e.g., Reichow and

Volkmar 2010). While the efficacy of early-intervention is

well established (e.g., National Research Council 2001;

Reichow 2012; Rogers and Vismara 2008), the paucity of

research on older individuals has caused the Interagency

Autism Coordinating Committee (IACC) to target transi-

tion programs for adolescence with ASD as a priority for

research (IACC 2012). This emphasis on transition coupled

with data on the poor post-school outcomes for individuals

with ASD (Billstedt et al. 2005; Henninger and Taylor

2013) indicate the importance of research exploring expe-

riences of higher-functioning individuals as they exit the

K-12 education system.

Trends in recent research point to increased knowledge,

awareness, and acceptance of individuals with ASD on

college campuses (Gardiner and Iarocci 2013; Neville and

White 2011; Tipton and Blacher 2013). In a survey with

over 1,000 respondents, the majority indicated they were

N. W. Gelbar (&) � I. Smith � B. Reichow AJ Pappanikou Center for Excellence in Developmental

Disabilities, University of Connecticut Health Center, 263

Farmington Avenue, MC 6222, Farmington, CT 06030, USA

e-mail: gelbar@uchc.edu

123

J Autism Dev Disord (2014) 44:2593–2601

DOI 10.1007/s10803-014-2135-5

aware of the increase in prevalence of ASD, though they

mistakenly attributed the increase to vaccinations (Tipton

and Blacher 2013). This finding may reflect a broader trend

in which campus communities are knowledgeable about

the increased prevalence of ASD and trends in treatment,

but remain less informed about etiology and outcomes

(Gardiner and Iarocci 2013; Tipton and Blacher 2013).

Quality of previous interactions with individuals with ASD

have been shown to predict acceptance and willingness to

volunteer to work with individuals with ASD, with females

and social science majors particularly likely to volunteer

and show acceptance (Gardiner and Iarocci 2013). A con-

tradictory finding, however, indicated that social science

majors were less comfortable interacting with individuals

with ASD than engineering majors or students who had

first-degree family members with ASD (Neville and White

2011).

Despite the increased awareness and acceptance of

college students with ASD, their relatives have expressed

concerns that these students were bullied, easily distracted,

unable to prioritize, and lacked the ability to structure their

schedules without the proper accommodations (Fleischer

2012). Relatives were further frustrated by their inability to

play a role in the collaborative relationship between stu-

dents and the disability services coordinators responsible

for securing supports (Fleischer 2012). Additional work has

described many of the academic challenges faced by

individuals with ASD as they transition to postsecondary

education. People have suggested that college counselors

should act as the primary facilitators in coordinating sup-

ports among faculty, disability services offices, peer men-

tors and parents (Graetz and Spampinato 2008; Pillay and

Bhat 2012). Although counseling and support services

geared specifically towards students with ASD are rare, one

exemplar program provided a first-year experience course

unique to individuals with ASD consisting of an environ-

ment in which students can express concerns with their

transition to college, practice social skills to facilitate

improved peer interactions, and become familiar with

campus facilities, procedures, and services (Smith 2007;

Wenzel and Rowley 2010).

The difficulties with executive functioning and critical

thinking faced by individuals with ASD can be addressed

by using a variety of instructional strategies including

breaking tasks into smaller pieces, providing clear expec-

tations for submitted work, and helping students to make

plans and stay organized (Shmulsky and Gobbo 2013).

Additional academic accommodations that have been

suggested include extended deadlines, extra time on exams,

and alternatives to group projects and assignments

involving public speaking (Gobbo and Shmulsky 2012).

These types of supports allow students with ASD to dem-

onstrate their knowledge of course material in a format

with which they are more comfortable. Difficulties with

loosely structured courses and abstract language used by

peers and professors have been addressed by providing

detailed syllabi and using concrete language in lectures

(Gobbo and Shmulsky 2012). Further, taking a reduced

course load or scheduling classes only on certain days of

the week has been suggested as a way to free students from

the pressure of busy class days (Adreon and Durocher

2007). Finally, to address the hypersensitivities of many

students with ASD, research has proposed the elimination

of as many distracting environmental stimuli as possible

(Gobbo and Shmulsky 2012).

In addition to academics, college students with ASD are

likely to face issues with socialization, independent living

skills (including housing and roommate concerns), self-

advocacy, and structuring their time (Adreon and Durocher

2007; Fleischer 2012; Pillay and Bhat 2012). To address

these concerns, utilization of independent agencies that

provide services above and beyond those legally required

by the Americans with Disabilities Act (ADAAA 2008)

such as mentorship programs and weekly support group

meetings has been proposed (Dillon 2007). Interventions

designed to improve peer communication by developing

scripted responses and practicing (role-playing) conversa-

tional skills have been described in the literature (Harrison

1998; Zager and Alpern 2010). Commuting from home to

avoid the stresses of dorm life has also been proposed as a

way to ease the transition to postsecondary education

(Pillay and Bhat 2012).

As the number of individuals with higher-functioning

ASD has risen (CDC 2012), the number of individuals with

ASD seeking to attend degree-granting institutions of

higher education is also likely to increase. Thus, it is

essential to understand the current research base docu-

menting the challenges and supports faced by college stu-

dents with ASD to develop effective programs for high-

functioning individuals with ASD in order to increase the

post-school outcomes for this group. Unfortunately, the

literature describing the intersection of ASD and post-

secondary education has been limited. A review summa-

rizing the available evidence does not current exist so the

purpose of this article is provide a systemic review of the

published literature on the firsthand experiences of indi-

viduals with ASD attending degree-granting colleges and

universities.

Methods

Selection Criteria

We included articles in our review meeting the following

inclusion criteria. First, the article contained individuals

2594 J Autism Dev Disord (2014) 44:2593–2601

123

with ASD who were attending a degree-granting college or

university. Second, the article included a first-hand

description of the services, supports, or experiences of one

or more individuals. Third, the article was published in

English in a peer-reviewed journal. Included and excluded

studies were collected following the Preferred Reporting

Items for Systematic Reviews and Meta-Analyses

(PRISMA; Moher et al. 2009).

Search Methods

We conducted an electronic database search of Medline,

Embase, and PsycINFO in October 2013 using the fol-

lowing text word search strategy: (exp child development

disorders, pervasive/OR autis* OR (pervasive develop-

ment* disorder* OR PDD or PDDs) OR Asperger*) AND

(undergraduate* OR college* OR university* OR (graduate

adj student*) OR postsecondary). Two authors screened all

titles and abstracts independently in order to exclude

clearly irrelevant articles. The full papers of the remaining

articles were then examined to determine which articles

met all inclusion criteria. After the database search, we

examined the reference lists of the included articles for

possible articles that were not located in the database

search.

Variable Definitions and Coding

For all articles, we attempted to code nine variables related

to participant characteristics, college experiences, and

services and supports received. We coded six variables

related to the participants of the articles. First, we coded

the location of the institution the participants were

attending (United States, Canada, Great Britain, or other).

Second, we coded the sample size of individuals with ASD

in the article (individuals with developmental disorders

other than autism were excluded). Third, we coded the

participant’s reported diagnosis (e.g., autism, high func-

tioning autism, Asperger’s syndrome, PDD, PDD-NOS).

Fourth, we coded the gender (percent male) of participants.

Fifth, we coded the mean, standard deviation, and range for

the age of the participants. Finally, we coded the partici-

pant’s full scale IQ.

We also coded three variables related to the college

experiences and the supports and services described in each

article. First, we coded firsthand experiences of the par-

ticipants (e.g., depression, anxiety, difficulty making and

keeping friends) that were described in each article. Sec-

ond, we coded if the student received academic accom-

modations (e.g., note-taker, extended time on exams,

separate test location) and/or curricular modifications (e.g.,

assignment substitution). Accommodations included any

service provided by an instructor, peer, independent agency

or campus disability office that better allowed participants

to complete the same coursework as peers in the same

classes, whereas curricula modifications were changes in a

course’s syllabus that permitted a participant to complete

different assignments than peers in the same class. Finally,

we coded non-academic support services that were

described (e.g., social support groups, peer mentors).

Results

Search Results

We located 3,553 records; 2,565 remained after deduplica-

tion. Fifty-one articles remained after title and abstracts were

screened to ensure that the study focused on college students

with ASD. Most of the excluded studies described or

reviewed interventions or issues facing students in the K-12

education system. After examination of the full papers we

judged 15 articles to meet all inclusion criteria. Examination

of the reference lists of these 15 articles revealed an addi-

tional 52 articles for full paper examination, of which five

met inclusion criteria. Thus, the final sample of articles was

20. The primary reasons for exclusion are shown in the

PRISMA flow diagram shown in Fig. 1.

Article Characteristics

We located 20 articles published in peer-reviewed journals

describing collegiate experiences and/or supports of adults

with ASD. The articles were all published in or after 1999,

which was over 50 years after Kanner’s first description of

infantile autism (Kanner 1943) and Asperger’s initial

description of the condition named for him (Asperger

1944). With respect to date of publication, one-half of the

articles (50 %) were published since 2010. Of the 20 arti-

cles, all but one reported college experiences from the

United States (11 of 20, 55 %) or the United Kingdom (8 of

20, 40 %); the one article not from the US or UK reported

college experiences of one student from Japan (Yamamoto

and Nihei 2008). The largest sample size of an individual

article was 12 (Langford-Von Glahn et al. 2008). A

majority of articles contained fewer than five participants

(14 of 20 articles, 70 %). Two articles (Pugliese and White

2013; Mason et al. 2012) used experimental methods to

investigate interventions. The remaining 18 articles (90 %)

were essentially case studies of individuals with ASD in

college.

Participant Characteristics

Table 1 provides information on participant characteris-

tics, college experiences, and types of support services

J Autism Dev Disord (2014) 44:2593–2601 2595

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across the articles included in this review. Collectively

there were 69 participants across the 20 articles included in

this review (there were the same eight participants in

Madriaga (2010) and Madriaga and Goodley (2010) and

the same single participant in Connor (2012, 2013) so they

were only included once in the total count). All (100 %)

articles provided diagnoses for participants, though one

(Lee et al. 1999) was speculative in nature. Asperger’s

syndrome (52 of 69, 75 %) was the most prevalent diag-

nostic category, followed by ASD (12 of 69, 17 %) and

PDD (5 of 69, 7 %). In articles that reported the gender of

participants (17 of 20, 85 %), the majority (41 of 60,

68 %) were male. Age information of participants was

included in five articles (25 of 69; 36 % of participants)

with a range across articles of 16- to 30-years-old

(M = 21.20, SD = 3.20). Full scale IQ information was

provided in one of 20 articles (5 %) for five participants

(M = 128, SD = 9.50).

College Experiences

Firsthand experiences of individuals with ASDs in college

settings were described in 17 of 20 (85 %) articles and are

shown by study in Table 1. Anxiety (12 of 17, 71 %) was

the most commonly reported experience, followed by

loneliness (9 of 17, 53 %) and depression (8 of 17, 47 %).

Participants also described experiences of isolation/mar-

ginalization (e.g., peer rejection of participant’s repeated

social overtures, peers starting a petition to have a partic-

ipant removed from a dormitory) in 4 of 17 articles (24 %).

Housing and roommate concerns were reported in 3 of 17

articles (18 %).

Academic Supports and Services

The majority of articles (12 of 20, 60 %) described aca-

demic supports and services for the students with ASD and

Fig. 1 Article inclusion decision tree (adopted PRISMA flow diagram)

2596 J Autism Dev Disord (2014) 44:2593–2601

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Table 1 College experience and supports for students with autism

Study Location N Diagnosis Gender

(M:F)

Age (years) First hand

experiences

Academic supports Non-academic

supports

Brazier

(2013)

United

Sates

1 Autism

spectrum

disorder

1:0 Not reported None reported Lecture notes, extra

time on exams

None reported

Connor

(2012)

United

Sates

1 Asperger’s

syndrome

1:0 19 Loneliness,

anxiety,

depression,

isolation,

bullying

Separate location and

extra time on exams

None reported

Connor

(2013)

United

Sates

1 Asperger’s

syndrome

1:0 19 Loneliness,

anxiety,

depression,

housing/

roommate

concerns

None reported None reported

Glennon

(2001)

United

Sates

4 Asperger’s

syndrome

4:0 Not reported Stress, housing/

roommate

concerns

Professor facilitation of

group work

Peer mentor,

Social Stories

counselor,

Griffin and

Pollak

(2009)

United

Kingdom

6 Asperger’s

syndrome

5:1 Not reported Loneliness Lecture notes, extra

time on exams,

extended deadlines,

tutor

Peer mentor

Jones et al.

(2013)

United

Kingdom

9 Autism

spectrum

disorder

6:3 Range 16–21 Bullying,

marginalization,

lack of

understanding

None reported None reported

Jurecic

(2007)

United

Sates

1 Asperger’s

syndrome

1:0 Not reported Difficulty writing

for an audience

None reported None reported

Langford-

Von

Glahn

et al.

(2008)

United

Sates

12 Asperger’s

syndrome

7:5 Not reported Loneliness,

anxiety,

depression,

academic

difficulty, lack of

understanding

Lecture notes and

materials,

coursework

modifications, testing

accommodations

None reported

Lee et al.

(1999)

United

Sates

1 Asperger’s

syndrome

1:0 21 Loneliness,

anxiety,

depression,

academic failure,

time management

None reported None reported

MacLeod

and

Green

(2009)

United

Kingdom

2 Asperger’s

syndrome

2:0 Not reported Anxiety, bullying Tutor Peer mentor,

counselor,

parent

involvement,

Social support

group,

disability team

MacLeod

et al.

(2013)

United

Kingdom

6 Asperger’s

syndrome

3:3 Not reported Marginalization None reported None reported

Madriaga

(2010)

United

Kingdom

8 Asperger’s

syndrome

5:3 M = 21.1

(SD = 3.9;

range 18–30)

Loneliness,

anxiety,

depression,

sensory

sensitivities,

dislike of crowds,

roommate

concerns

Note-taker, extended

Extended deadlines,

extra time for exams,

tutor

Peer mentor

J Autism Dev Disord (2014) 44:2593–2601 2597

123

are described by study in Table 1. Accommodations were

described in 9 of 12 articles (75 %) and included extra time

on exams (6 of 9, 67 %), lecture notes from instructors (5

of 9, 56 %), use of a separate testing location (3 of 9,

33 %), extended deadlines on assignments (2 of 9, 22 %),

lecture notes from peers (2 of 9, 22 %), oral exams (1 of 9,

11 %), and professor facilitation of group projects (1 of 9,

11 %). Course curricula modifications were described in 3

of 12 (25 %) articles (Langford-Von Glahn et al. 2008;

Taylor 2005; Taylor et al. 2008) describing individualized

supports. In all three cases, the modifications included

individual projects in lieu of group projects. In two articles,

participants were permitted to give presentations one-on-

one with an instructor rather than in front of a large group

(Taylor 2005; Taylor et al. 2008).

Non-academic Supports and Services

Nine of 20 (45 %) studies described non-academic support

services provided to college students with ASDs which are

shown by study in Table 1. The majority of these supports

took the form of peer mentorship programs (5 of 9, 56 %)

or assigned counselors, aides, or liaisons (5 of 9, 56 %).

Three of 9 (33 %) articles described parental involvement.

Single instances of the use of Social Stories (Glennon

2001), disability teams (MacLeod and Green 2009), social

Table 1 continued

Study Location N Diagnosis Gender

(M:F)

Age (years) First hand

experiences

Academic supports Non-academic

supports

Madriaga

and

Goodley

(2010)

United

Kingdom

8 Asperger’s

syndrome

5:3 M = 21.1

(SD = 3.9;

range 18–30)

Loneliness,

anxiety,

friendship,

depression,

marginalization,

discrimination

Separate location and

extra time for exams

None reported

Mason

et al.

(2012)

United

Sates

2 Asperger’s

syndrome

2:0 M = 22.5

(SD = 3.5;

range 18–26)

Loneliness, anxiety None reported Video modeling,

counselor

Oda (2010) United

Sates

1 Autism

spectrum

disorder

0:1 Not reported Anxiety Tutor None reported

Pugliese

and

White

(2013)

United

Sates

5 Asperger’s

syndrome

(4),

Autism

spectrum

disorder

(1)

5:0 M = 21.27

(SD = 1.88,

range 18–23)

None reported None reported Cognitive

behavioral

intervention,

problem

solving skills

lessons

Taylor

(2005)

United

Kingdom

3 Asperger’s

syndrome

Not

reported

Not reported None reported Coursework/

curriculum

modifications, notes

for classes missed

Counselor,

parent

involvement

Taylor

et al.

(2008)

United

Kingdom

2 Asperger’s

syndrome

Not

reported

Not reported Anxiety, disruptive

behavior

Coursework/

curriculum

modifications

(individual

alternatives to group

assignments), notes

for classes missed

Counselor,

parent

involvement

Van

Bergeijk

et al.

(2008)

United

Sates

1 Autism

spectrum

disorder

1:0 Not reported Loneliness,

anxiety,

depression

Tutor Peer mentor

Yamamoto

and Nihei

(2008)

Japan 4 PDD

(suspected)

Not

reported

Not reported Loneliness,

anxiety,

depression, peer

relationships,

academic failure

None reported None reported

2598 J Autism Dev Disord (2014) 44:2593–2601

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support groups (MacLeod and Green 2009), video model-

ing (Mason et al. 2012) and cognitive behavioral inter-

ventions (Pugliese and White 2013) were also reported.

Discussion

Overall, the major finding of this review is the scarcity of

research concerning the experiences of college students

with ASD. Only 20 articles describing 69 individuals met

the inclusion criteria for this review, which were pur-

posefully broad in order to capture as many articles as

possible. Specifically, the current literature base contains

fragmented descriptions of programs, experiences, and

theoretical suggestions for effective programs. As shown in

Fig. 1, the majority of articles (n = 39) were excluded

because they did not describe firsthand accounts of college

experiences, supports, and services. While many of these

articles contained suggested practices that are likely to be

effective and helpful, it is time to move past theoretical

suggestions and into empirically-based recommendations.

More research in this area is needed to support effective

transition and post-secondary programming. Potential

avenues for this research include surveying and inter-

viewing college students with ASD to understand their

experiences in post-secondary education in order to inform

transitions practices.

A secondary finding of this review involves the research

methodologies used in the research literature. Only two

studies (Mason et al. 2012; Pugliese and White 2013)

contained experimental manipulations; the remaining 18

articles amount to what would be best described as case

studies. It should be noted that this review used a liberal

definition of a case study as many of the articles provided

very brief descriptions of the individual’s experiences,

presented only one individual as a case study, and the case

presented often supported the researcher’s theoretical

positions on what constituted effective postsecondary

programming for individuals with ASD. Of the two

experimental studies, both used single subject experimental

designs. The first study investigated the effectiveness of

video-modeling to improve social communication in col-

lege students with ASD (Mason et al. 2012) and the second

examined effectiveness of a cognitive-behavioral therapy

(specifically a psycho-educational intervention designed to

improve problem-solving skills) (Pugliese and White

2013). The effectiveness of these two interventions that are

theoretically distinct does not provide any indication of

what effective post-secondary programming should entail.

In addition, the use of mostly case studies to support the-

oretical suppositions and two fragmented intervention

studies indicate that future research on the experiences of

college students with ASD is essential. It is crucial to

investigate the experiences of these students to understand

the nature of their reported skill deficits that informs future

intervention studies.

These two findings coalesce and support other review

studies that the evidence-based supporting practices for

adolescence and adults is scant (Volkmar et al. 2014).

While the evidence supporting behavioral interventions is

overwhelming (Matson 2009; Reichow et al. 2012), it is

unclear if these interventions develop the broad and gen-

eralized skill sets that are required for competitive

employment or postsecondary success. Transporting these

interventions from early intervention to transition- and

postsecondary-aged youth especially for individuals who

are higher-functioning may not be the most effective

approach though further research is clearly necessary.

Overall, it is unclear which theoretical paradigms would

best serve these students when designing programming.

Currently, the K-12 system assumes given the academic

achievement of higher-functioning individuals with ASD

that they will be successful in postsecondary environments;

an assumption that is contraindicated by the literature on

their post-school outcomes (Billstedt et al. 2005; Hennin-

ger and Taylor 2013). This assumption is also contradicted

by the results of this literature review; the majority of the

articles included indications of depression, anxiety, and

loneliness. Obviously, further research is needed to explore

the prevalence rates of these concerns in college students

with ASD, but other research has indicated that adolescents

with ASD also have reported these issues (Berthoz et al.

2013; Skokauskas and Gallagher 2010; Strang et al. 2012).

Beyond the social and emotional difficulties faced by these

students, it is also important to understand the areas in

which they report that they are academically prepared and

the areas academically in which they struggle.

Conclusion

Given the increased prevalence rates of higher-functioning

individuals with ASD, it is likely that more individuals

with ASD will be entering higher education. This position

is supported by the increasing rate of publication on

experiences and supports for college students with ASD

seen in this review. These articles reported a systematic

review of the literature regarding the experiences and

support services reported in the peer-reviewed literature for

college students with ASD. We found 18 case studies and

two experimental intervention studies of individuals with

ASD in college. The case studies indicated the presence of

anxiety, loneliness, and depression and the need for aca-

demic and non-academic supports. One intervention study

investigated video-modeling using single-subject method-

ology; the other intervention study explored a cognitive-

J Autism Dev Disord (2014) 44:2593–2601 2599

123

behavior therapy focused on building problem-solving

skills. Overall, the current literature-base describing the

experiences of and programs for individuals with ASD in

college is fragmented and indicates that much research is

necessary to understand how to best serve this population

and to improve their post-school outcomes.

Acknowledgments This research was not funded by any grant. We would like to acknowledge Mary Beth Bruder, Director of the AJ

Pappanikou Center for Excellence in Developmental Disabilities at

the University of Connecticut Health Center, for her support and

guidance as we pursue this line of research.

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  • Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs
    • Abstract
    • Introduction
    • Methods
      • Selection Criteria
      • Search Methods
      • Variable Definitions and Coding
    • Results
      • Search Results
      • Article Characteristics
      • Participant Characteristics
      • College Experiences
      • Academic Supports and Services
      • Non-academic Supports and Services
    • Discussion
    • Conclusion
    • Acknowledgments
    • References

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