week 2 508 discussion part 1

ORIGINAL PAPER

Higher Education Experiences of Students with Autism Spectrum Disorder: Challenges, Benefits and Support Needs

Valérie Van Hees • Tinneke Moyson •

Herbert Roeyers

Published online: 2 December 2014

� Springer Science+Business Media New York 2014

Abstract The transition into higher education constitutes a

precarious life stage for students with autism spectrum dis-

order (ASD). Research on how students with ASD navigate

college life is needed for the development of adequate sup-

port. This study investigated the challenges and support

needs of 23 students with ASD in higher education through

semi-structured interviews. Data were analyzed following

the principles of Grounded Theory. Students faced difficul-

ties with new situations and unexpected changes, social

relationships, problems with information processing and

time management and had doubts about disclosure. Facing

these challenges simultaneously in the domains of education,

student life and daily (independent) living, had a major

impact on students’ well being. Besides these challenges,

students also reported benefits that contributed to success in

the three domains. They pointed out to a set of recommen-

dations for support. These findings are linked with previous

research and implications for higher education institutions

are extrapolated on the basis of these findings.

Keywords ASD � Higher education � Qualitative research � Students’ challenges � Benefits � Support needs and recommendations

Introduction

Autism spectrum disorder (ASD) refers to a class of neu-

rodevelopmental disorders characterized by deficiencies in

social interaction and communication, as well as the pre-

sence of behaviors, activities and interests that are repetitive

and restrictive (American Psychiatric Association; APA

2013). Recent studies estimate the prevalence of ASD

between 0.6 and 1 % (Brugha et al. 2011; Davidovitch et al.

2013; Elsabbagh et al. 2012; Fombonne et al. 2011).

According to recent data of the Centers for Disease Control

and Prevention (CDC), 1 out of every 68 children (1.47 %)

in the United States has ASD, a significant increase in ref-

erence to the past 10 years (CDC 2014; Schieve et al. 2012).

Factors contributing to the increased prevalence of ASD

include heightened public awareness, changes in diagnostic

criteria, and improved ability to diagnose ASD among

individuals without an intellectual disability (Pinder-Ama-

ker 2014). Most likely due to the increase in prevalence, the

effect of (early) treatment programs and the introduction of

disability legislation in education, a growing number of

students with ASD is enrolling in higher education (Adreon

and Durocher 2007; Barnhill 2014; Pillay and Bhat 2012;

VanBergeijk et al. 2008). With the improved identification

of ASD among individuals with no intellectual disability, it

is assumed that the number of college students diagnosed

with ASD will continue to increase even further (Barnhill

2014; Pugliese and White 2014).

Although students with ASD have the potential to per-

form well academically, they are at a heightened risk for

Electronic supplementary material The online version of this article (doi:10.1007/s10803-014-2324-2) contains supplementary material, which is available to authorized users.

V. Van Hees (&) Office for Study and Career Guidance, Artevelde University

College Ghent, Hoogpoort 15, 9000 Ghent, Belgium

e-mail: [email protected]

T. Moyson

Department of Education, Health and Social Work, University

College Ghent, Voskenslaan 362, 9000 Ghent, Belgium

e-mail: [email protected]

H. Roeyers

Department of Experimental Clinical and Health Psychology,

Ghent University, Henri Dunantlaan 2, 9000 Ghent, Belgium

e-mail: [email protected]

123

J Autism Dev Disord (2015) 45:1673–1688

DOI 10.1007/s10803-014-2324-2

academic and personal failure during the college years

(Kapp et al. 2011; Pinder-Amaker 2014). Compared to

other disability categories, students with ASD have

decreased graduation and employment rates (Sanford et al.

2011; Shattuck et al. 2012; Taylor and Seltzer 2011) and

they are more likely to develop psychopathological disor-

ders (Friedman et al. 2013; Pinder-Amaker 2014; Shattuck

et al. 2012). The core features and the psychiatric risks of

ASD, coupled with new stresses and demands of higher

education (e.g., increasing independence, international

mobility, living in residence) pose significant challenges to

students with ASD (Kapp et al. 2011; Pinder-Amaker

2014). Challenges frequently reported include non-aca-

demic issues such as difficulties with social skills, inter-

personal deficits, organizational and time management

difficulties, lacking self-advocacy skills and sensory over-

load, as well as problems meeting academic demands

(Fleischer 2012; Gelbar et al. 2014; Madriaga 2010;

Madriaga and Goodley 2010; Taylor 2005). To address

these challenges, universities and colleges must provide

appropriate interventions and supports that differ from

those provided for students with other types of disabilities

(Barnhill 2014; Friedman et al. 2013; VanBergeijk et al.

2008).

With the introduction of disability discrimination legis-

lation (e.g., UN – Convention on the Rights of Persons with

Disabilities; United Nations 2006), institutions have put a

lot effort into making their education and activities more

accessible for students with disabilities by providing them

an equal opportunity to participate (Pillay and Bhat 2012).

While many universities and colleges are quite adept at

making reasonable accommodations for students with

learning disabilities (VanBergeijk et al. 2008), institutions

for higher education struggle with how to support the

growing group of students with ASD (Barnhill 2014; Pug-

liese and White 2014; White et al. 2011). The invisibility

and the heterogeneity of this group with ASD make it dif-

ficult to estimate which specific challenges students with

ASD face, and which accommodations and support initia-

tives are appropriate. Although the number of manuals and

interventions for college and university students with ASD

has increased (e.g., Pugliese and White 2014; Zager and

Alpern 2010), current postsecondary interventions remain

sparse, are theoretically distinct, and their effect has yet to

be empirically confirmed (Gelbar et al. 2014; Pinder-

Amaker 2014). As more and more students with ASD enroll

in higher education and since they are at a heightened risk

for academic and personal failure, there is an urgent need

for evidence-based interventions so that these students can

successfully navigate college life, ensuring their quality of

life during this period (Barnhill 2014; Chiang et al. 2012).

In order to gain a thorough understanding of the needs of

students with ASD without overlooking important needs,

and in order to avoid the development of inadequate and

stigmatizing support systems, several researchers (e.g.,

Griffith 2012; Humphrey and Lewis 2008; Madriaga 2010)

have recommended to include the perspectives of individ-

uals with disabilities as a systematic part of any interven-

tion-orientated research (Müller et al. 2008). Although

elaborate research exists in youth with more severe forms

of ASD, research charting the perspectives of students with

ASD in higher education is scarce and fragmented (Gelbar

et al. 2014; Pinder-Amaker 2014). A systematic review of

the literature (Gelbar et al. 2014) found only 20 studies

describing the experiences of in total no more than 69

college students with ASD. Most of these studies either

focus only on students with Asperger’s syndrome who are

studying at a single university, conduct a case study

methodology (18 studies) with samples varying from one to

eight students, or only examine a single topic of college or

university experience (e.g., academic support, access to

common areas, etc.). Given the heterogeneity of ASD and

the psychiatric risks coupled to ASD, it is necessary to

investigate in a more systematic way the experiences and

support needs of a larger group of students with ASD, at

the same time taking into account a wide variety of aspects

of college and university life (Gelbar et al. 2014).

Study Aims

The objective of this study was to gain a thorough under-

standing of how universities and colleges can optimally

support students with ASD, seen from their own perspec-

tive. We investigated in a systematic way (1) the chal-

lenges students with ASD face during the transition to

higher education and in college or university itself, and (2)

their academic and social support needs. The college or

university experience was defined broadly and included

education, student life and daily (independent) living. This

wide perspective allowed us to enter the students’ life and

understand their daily struggles and uplifts as students with

ASD in higher education. A better understanding of stu-

dents’ experiences and support needs will allow for a

development of interventions that is tailored to the specific

needs of this group of students.

Method

Methodological Approach

Since we were interested in the experiences from the stu-

dents’ own frame of reference, rather than testing variables

contributing to success in college experience, a qualitative

research design was adopted for this study. Because we

1674 J Autism Dev Disord (2015) 45:1673–1688

123

wanted to give students with ASD sufficient opportunity to

speak freely about their experiences, and because we

wanted them to come up with unanticipated topics, data

were collected through semi-structured interviews.

According to Barriball and While (1994), semi-structured

interviews are suitable for the exploration of respondents’

perceptions and opinions regarding complex and sensitive

issues. Since only limited theoretical and empirical

research exists on ASD and higher education, principles of

the Grounded Theory Approach (GTA: Bogdan and Biklen

1998; Corbin and Strauss 2008) were used as a guiding

approach for data analysis. Grounded Theory is a qualita-

tive methodology that uses the inductive process of iden-

tifying analytical themes or patterns as they emerge from

data (Corbin and Strauss 2008). The added value of the

inductive analysis in this study was that this approach

offered the potential to generate a framework of how stu-

dents with ASD experience navigating in higher education.

In doing so, we hoped to gain new insights and recom-

mendations for effective support for students with ASD in

higher education.

Participants

For this study, we intentionally sampled students who were

attending higher education at the time of the research, or had

done so previously for at least 1 year. Former students were

not excluded. Three additional inclusion criteria were for-

mulated: a formal diagnosis by a multidisciplinary team of

experienced clinicians; the fulfillment of the DSM-IV-TR

criteria for autistic disorder, Asperger’s syndrome, or PDD-

NOS (APA 2000); and no diagnosed intellectual disability.

Recruitment was conducted through the Flemish user orga-

nization for ASD, two ASD counseling services and three

Disability Offices attached to three different higher educa-

tion institutions (one university and two university colleges).

According to the principles of convenience sampling, every

student who volunteered for the study and who met the

inclusion criteria, was selected for this study. Participants

were 23 young adults with ASD, 17 men and 6 women living

in Flanders (Dutch-speaking part of Belgium), the majority

of whom were between 18 and 25 years old and still

attending university or university college (hereinafter called

‘colleges’) at the time of the interviews. Four of the six

former students were employed, two of them in the actual

area of expertise of their diploma. The sample was diverse

both in terms of age of first diagnosis and field of study

(Health care, Education, Business Sciences, Art and History,

Politics and Sociology, Law and Criminology, Industry and

Technology and Human Sciences). All students except one

received or had received some form of support at their col-

lege or university.

Data Collection

In order to collect data in a standardized way and to facilitate

participants to share their experiences, an interview schedule

was developed for this study. An extract from the interview

schedule is presented in Appendix A. According to the aims

of the study, the interview schedule focused on the topics

‘education’, ‘student life’ and ‘daily (independent) living’.

The schedule also included a section on ‘transition to

employment’. Each topic had an introduction explaining the

purpose and focus of the topic and consisted of a series of

open-ended questions and various prompts to elicit infor-

mation about what challenges students with ASD faced, how

they coped with these, their opinions of the support that they

had received, and the possible support facilities they would

recommend for the future. When participants contacted the

researchers, expressed interest and met the general eligibility

criteria a consent form and information sheets with details of

the study were discussed with the participants, after which

written consent was gained. Interviews took place at their

home or in the disability office according to each partici-

pant’s preference. To maintain consistency, researcher 1

conducted all interviews using the interview schedule. Prior

to each interview, participants were informed they could

refuse to answer any question that made them feel uncom-

fortable. Each interview started with an introduction in

which the researcher reminded the interviewee of the pur-

pose of the interview and ensured the comfort level of the

participant. To maintain sufficient openness for the students

to speak freely about their experiences and to give them the

opportunity to come up with unanticipated topics and gen-

erate new discussion, the interview schedule was handled

flexibly. All interviews were recorded digitally. Interview

length ranged from 26 to 147 min (mean = 78 min). Inter-

views were transcribed verbatim after which transcripts were

made anonymous and checked for accuracy. Field notes

provided details and descriptions of each interview and the

participant.

Analysis

Data were analyzed following the principles of Grounded

Theory (Bogdan and Biklen 1998; Corbin and Strauss 2008;

Miles and Huberman 1994; Mortelmans 2011). In a first

phase, individual interview data were subjected to a process

of open coding by two independent researchers. After a

thorough first reading of the interview transcripts, the

researchers read the transcripts several times carefully line-

by-line, noting nodes and comments in the margins. In a

second phase, researcher 2 conducted intensive analyses

with NVIVO 10, a qualitative data management software

program (QSR International 2012). This process of open and

axial coding resulted in a first figure of themes, representing

J Autism Dev Disord (2015) 45:1673–1688 1675

123

and explaining the students’ experiences. Table 1 represents

an abstract of the coding book, showing the frequency of

each theme. In the third and last phase, individual member

check interviews were conducted. Three participants,

already interviewed by researcher 1, were invited by the two

researchers to discuss individually the figure and the links

between the themes. Based upon the information of the

member check interviews, the researchers refined the figure

representing the students’ experiences in higher education

(see Fig. 1).

Adequacy of the Research Process

We ensured rigor by incorporating procedures to address

credibility, transferability and dependability (Corbin and

Strauss 2008; Lincoln 1995). For addressing credibility, we

Table 1 Frequency of themes and subthemes

Themes Subthemes Frequency

Struggling with new situations and

unexpected changes

22

Difficulties to oversee the large amount of new

information

22

Searching for new structures and routines 20

Forcibly getting rid of structure 19

Worries about transition to employment 20

Exhausting but necessary social

contacts

21

Striving hard to fit in 19

Difficulties managing social demands 21

Awareness of social problems 18

Processing information and time

management in fits and starts

22

Processing information in fits and starts 22

Time management in fits and starts 20

Sensory overload 19

Doubts about disclosure 22

Resistance to disclose 19

Disclosure for support 22

Mental health issues 23

Anxiety 22

Stress 23

Fatigue 21

Feeling overwhelmed 21

Loneliness 20

Depression 16

Benefits 21

Strong memory 20

Focus precision | Dedication 21

Analytic skills | Remarkable powers of observation 17

Sincerity | Impartiality 17

Willingness to listen to others 18

Support recommendations 22

A personalized approach 22

A safe and transparent environment with sufficient

planning and clear communication

21

Academic accommodations 20

Coaching in education, student life and daily living 21

Adequate psychosocial support 20

Leisure activities and a sufficient amount of rest 18

1676 J Autism Dev Disord (2015) 45:1673–1688

123

triangulated data by using trained researchers for data

collection and analysis, and we conducted individual

member check interviews. Transferability was enhanced

both by including participants from different geographical

regions of the country and different institutions of higher

education, and by ensuring participants reflected a variety

of characteristics (e.g., age, gender, field of study). To

ensure dependability, the two researchers regularly dis-

cussed their findings in order to achieve consensus on

themes, as well as to reduce inherent biases in the personal

interpretation of interview transcripts.

Ethical Standards

The Ethical Committee of the faculty of Psychology and

Educational Sciences of Ghent University granted ethical

approval to the study. Prior to data collection, the purpose

of the study and ethical issues regarding anonymity and

confidentiality were discussed with the participants. Full

voluntary informed consent was gained from the partici-

pants. Participants were given the right and freedom to

withdraw without any reason at any time during the study.

Results

In essence, the life of a student consists of three major

aspects: education, student life and daily (independent)

living. As illustrated by Fig. 1, in each domain four themes

of challenges emerged from analysis. However, for the

students, the three domains were deemed inseparable, and

the challenge consisted precisely in the simultaneous

combination of tasks and challenges in the three domains,

resulting in major mental health issues. Students under-

scored the need for extra support and coaching both in the

transition to higher education as in higher education itself.

After analysis, six themes of support recommendations

remained. Apart from challenges and support needs,

Education e.g., participating in classes,

assignments, study skills

Student life

e.g., student unions, extracurricular activities

Daily (independent)

living e.g., living in residence,

shopping, cooking

Support recommendations

A personalized approach

A safe and transparent environment with sufficient planning and clear communication

Academic accommodations

Coaching in education, student life and daily living

Adequate psychosocial support

Leisure activities and a sufficient amount of rest

Challenges

Struggle with new situations and unexpected changes

Exhausting but necessary social contacts

Processing information and time management in fits and starts

Doubts about disclosure

Mental health issues

Stress

Anxiety

Depression

Fatigue

Feeling overwhelmed

Loneliness

Benefits

Strong memory

Focus precision | Dedication

Analytic skills | Remarkable powers of observation

Sincerity | Impartiality

Willingness to listen to others

Fig. 1 Higher education experiences of students with ASD

J Autism Dev Disord (2015) 45:1673–1688 1677

123

however, students also reported strengths and talents that

contributed to benefits in all three domains. In the sub-

sequent sections we will describe the challenges, the ben-

efits and the support needs discussed by the participants.

Direct quotes from participants for which pseudonyms

were used, are presented in indented paragraphs.

Challenges

Challenge 1: Struggling with New Situations

and Unexpected Changes

Difficulties to Oversee the Large Amount of New Infor-

mation During the transition to higher education, students

experienced difficulties in overseeing the large amount of

choices, and faced challenges estimating the consequences

of the choices made.

Because of my passion for history the career decision

went smoothly. From the fifth year of secondary

education on, I already knew that I would study

history. The other choices, however, were very dif-

ficult. I had doubts about whether or not to start living

independently, if and when and to whom I would

disclose my autism, and which specific support I

would ask for. My parents had to provide guidance

regarding these decisions. (Erik, aged 27, university)

Students were frightened because they were to leave

behind familiar surroundings, people and structures, and

had to face many new situations.

For me, the transition to higher education was very

scary at first. On the one hand I was afraid I couldn’t

cope with the material, on the other I was very

intimidated by the social aspect and by the large

group of new people. (Linda, aged 23, university)

Searching for New Structures and Routines Students

immediately searched for new structures and routines

within all three life domains. However, the lack of structure

and predictability in typical higher education programmes

made time management and daily organization difficult. It

also hindered the development of new routines and the

many unexpected changes posed a major challenge.

Yesterday a lesson was cancelled. First the lesson

was supposed to happen, and then it was not, and

finally it was cancelled. I was really confused during

the entire day. I could not cope with the change. I got

a bit stuck. I tried to do something different instead,

but at that moment I became so upset by the loss of

structure that I could not do anything else for the rest

of the day. So that’s the disadvantage in higher

education. It is often last-minute. (Joyce, aged 21,

university college)

Day-to-day activities required a lot of time and energy.

The newer the activity and the more new activities needed

to be taken into account and organized, the more students

felt overwhelmed and the more their management of

activities failed.

At the start there are new lessons and new people, and

there is also living in student accommodation. That

was quite hard for me. You’re alone, you have to

study and have to cook. I ate spaghetti every day,

because I did not know what to buy in the store. I felt

lonely, I couldn’t sleep nor study, and I forgot

appointments. In fact, it was actually too much.

(Dorothé, aged 20, university college)

Forcibly Getting Rid of Structure In spite of the need for

structure and predictability, students pushed themselves to

get rid of structure instead. They ‘trained’ themselves to

cope with unexpected things and live with less planning in

order to handle unexpected occurrences better and make it

further in life.

Dealing with structures is a struggle. On the one hand

you have a need for them, but on the other it is

important not to give into that need for structure.

Otherwise, you risk not to trying out any new things.

Consequently, I tried to resist, and do things without

planning. But sometimes it’s hard to decide in which

cases to allow yourself that kind of structure and

comfort, and in which cases you should push yourself

instead. During my studies, I participated in the inter-

national Erasmus exchange programme. I was in fact

really frightened to go. In retrospect, I am glad that I did

it, because it prevents you from getting stuck in a rut

intellectually, and because you meet new people from

different countries and push your own limits. If you

don’t push yourself many times, you are in danger of

never trying new things and you might not make any

progress in life. (Linda, aged 23, university)

Worries about the Transition to Employment When

starting higher education, students already worried about

the next transition. They doubted if and how it would be

possible to instantly create a new structure and routine at

their future workplace. They were convinced that diffi-

culties in understanding the social rules and expectations

would result in problems.

I think starting working later on could be a problem. I

have always lived in a structure that was provided for

me by others: infant school, elementary and

1678 J Autism Dev Disord (2015) 45:1673–1688

123

secondary school, even in higher education. But after

graduation, what will happen then? There will be no

such structure. At that point everything will be new

then, and open. I will have to organize my own life.

That really frightens me. I could try to excel now and

be a high performer at university. But once I will

have finished my education, I fear that I will not

know how to organize my life, and will end up with

the beggars in the railway station. (David, aged 19,

university)

Challenge 2: Exhausting but Necessary Social Contacts

Striving Hard to Fit in Students expressed a clear need

for friendships and relationships. They realized how

important having a social network is in order to feel a sense

of belonging and they were striving hard to ‘fit in’. By

observing and analyzing social interactions and situations,

they developed an array of scripts that enabled them to

react adequately in various situations, especially on

campus.

People with ASD definitely have a need for social

contact. The problem is that, at a very fundamental

level, we do not know how to achieve this. I just keep

thinking how to react in social situations. I taught

myself the art of small talk: you see other people, you

read books, you watch movies. You just look at what

people do in a situation, and you adopt it, you act in

the same way. But it was not really ‘me’. In the

beginning I felt as if I was just ‘‘doing anything’’. But

after some time it became a thing of my own. (Leon,

aged 23, university)

Conversations with fellow students generally proceeded

more smoothly than in high school thanks to shared

interests in the field of study. In that respect, higher edu-

cation was a relief.

During the first lecture on mathematics that I atten-

ded, I sat there my mouth agape. I was surrounded by

people just like me, who were eager to learn about the

things taught in class. That was absolutely beautiful. I

did not go to a lecture. I went to a playground. That

was really wonderful! (Leon, aged 23, university)

Difficulties Managing Social Demands Despite all sorts

of social efforts, the inability to read social cues caused

diverse problems. Students mentioned difficulties in

knowing when it was appropriate to ask questions in the

course, how to address professors after the course, how to

know what other people expected, in initiating and sus-

taining conversations, etc.

You work on a project in a group to solve a problem.

But besides the fact that you have to solve something,

you also have to actively consider: ‘‘How am I

functioning in the group?’’ That causes extra stress,

and is yet another energy cost that you have to invest

to perform well in a group project. You need to find

an answer to the set problem, but you also have to

make sure you are functioning in a group properly.

So, yes, that is quite difficult. (Leon, aged 23,

university)

Group projects and participation in activities organized

by students’ unions were a great issue. Nevertheless, many

students forced themselves to take part in these activities,

because they regarded them as opportunities to socially

engage with other students.

The ordinary student life of going out and going to

pubs, doing normal things with other students, is

absolutely not that easy for me. My fellow students

quite often ask me to go out with them, but in 90 %

of the cases I refuse because I’m constantly worrying

about what the evening will be like. Where will these

people want to go? Will it be easy for me to get in

and out of that place? When I commit myself to going

out - because you have to go out now and then and

have a good time - worries turn out to be unjustified

most of the time. Such an evening out can actually go

smoothly and very spontaneously, and can really be a

pleasant experience. (Rik, aged 24, university)

Students stuck carefully to their engagements and found

it particularly difficult when others did not respect

agreements.

Awareness of Social Problems The awareness of their

social problems, the fear of saying the wrong things and the

need to recover from anxiety and the extra strains, had a

negative impact on students’ confidence to socially engage

with others and to invest further in maintaining contact and

friendships. Students did not have access to an extended

social network. Social contacts were often restricted to a

few interesting meetings on campus. Students felt lonely,

and experienced difficulties liberating themselves from that

social isolation. Online conversations via Facebook or chat

programs were perceived as both easier and worthwhile.

I’m a lonely person socially. I do not meet many

people. I’m lonely. Still, in my contact with people

I’m quite open. I must admit that I would like to have

more social contacts, but I am very uncertain. I’m not

really enterprising, rather hesitant. I do not take the

initiative. But if there is an offer, I accept it and want

to go out. (Pol, aged 22, university college)

J Autism Dev Disord (2015) 45:1673–1688 1679

123

Challenge 3: Processing Information and Time

Management in Fits and Starts

Students faced academic and daily challenges, which they

attributed to a different way of processing information,

problems with time management and to sensory overload.

Processing Information in Fits and Starts

My brain functions as if it were a computer network.

In fact, there is one central computer within which

you still have 7 or so other computers. They can be

switched off, but actually they are on screen saver at

that time… If I sit in class, one computer deals with what the professor talks about, another computer

watches what appears on the board, another is

focused on the hum of fellow students, another on

what I should write down, another computer on the

sound of the lights in the auditorium, and there is also

one computer that records what my neighbour is

asking me or saying to me… and the central com- puter which then has to process everything … (Max, aged 20, university)

Students tended to focus on numerous little details and

often needed more time for seeing or applying coherence to

the information they perceived. This especially affected

following courses, studying and exams, but also daily living.

Processing information happens in fits and starts. I

have difficulties distinguishing between what is

important and what is less important. For example,

when I study for a course I find it difficult to separate

essentials from side issues … the other day, I was preparing my geology exam. I read something about a

volcanic eruption. This volcanic eruption was no

more than a small anecdote in the course. I investi-

gated that eruption to find out all about it. But that

was of no use whatsoever on the exam. I encounter

those kinds of situations quite often. I become so

focused on something that is of no importance at all.

To me, at that time, that detail means the world. (Rik,

aged 24, university)

Time Management in Fits and Starts While there were

students who meticulously planned everything, there were

other students who could not make a time schedule and

procrastinated before taking on tasks. Students felt over-

whelmed by the large amount of information and demands,

and lacked flexible problem solving skills. At an academic

level, difficult courses were considered those that required

reflective thinking, and internships or work placements

those in which lot of different competences had to be

integrated.

When I was working on my thesis, that was quite a

project. I rushed into it head over heels, but I drowned in

it very quickly because I felt completely overwhelmed

byall the information I was receiving.I simplycould not

process all that material, I could not turn it into a viable

structure. (Erik, aged 27, university)

Sensory Overload Students also suffered from sensory

overload, caused by flickering lights, the sound of typing

on laptop keyboards, etc. The sensory issues also had an

impact on the three domains (e.g., not eating in the cafe-

teria, avoiding pubs, not studying at the library, the need to

sit in the front of the classroom, etc.), and caused fatigue

and stress from which students needed time to recover.

For me it is especially difficult to filter stimuli when

there are many people present. They simply create

too much noise. There is a lot of movement so that

visually, you see a lot of things happening simulta-

neously. As a consequence, I cannot concentrate on

anything else. I cannot filter it out. It takes up all the

space in my mind. During the first year of university,

I could not stand classes in auditoria. I only went to a

lecture once or twice if subjects were taught in a large

auditorium. (Linda, aged 23, university)

Challenge 4: Doubts about Disclosure

A Resistance to Disclose A lack of knowledge regarding

ASD, an ignorance and many types of generalizations about

what ASD really is, doubts concerning privacy, a lack of

supportive policies and the wish to make a fresh start, were all

reasons why students decided not to disclose their diagnosis to

their social contacts. Especially for students who were able to

hide their ASD well and who knew how to compensate for

their weaknesses, it was difficult to talk about it.

I do not easily tell people that I have autism because

of the reaction I usually get when I actually do.

People who say: ‘No, that can’t be right, you don’t

have autism’, they obviously know nothing about

autism. ‘Oh, you have autism, so you can fly over

London and make a complete drawing of the entire

city afterwards?’ No, I cannot. I have no special

superpowers. Not at all. No special tics either. There

is no need to look for them because I don’t have

them. (Rik, age 24, university)

Disclosure for Support Students only appeared to dis-

close their ASD when they felt that they could not cope

with the stress any longer, when they felt safe or when they

experienced a specific support need. Students disclosed

their ASD to the Disability Office to apply for ‘reasonable

1680 J Autism Dev Disord (2015) 45:1673–1688

123

accommodations’, but did not disclose their ASD during

contact with peers and academic staffs. This was mostly

due to past negative perceptions and comments, the fear of

stigmatization, prejudice, rejection or negative recom-

mendations. However, in some cases disclosure of ASD to

fellow students and professors, resulted in several benefits.

It was actually a mistake of mine to have difficulties

talking about it in the beginning of my university

career. Especially not telling professors about it was

wrong, because from the moment I disclosed my

autism to my supervisor, he was able to understand

me better. From that moment on he had the patience

to allow me to work on my thesis in peace and quiet,

at my own pace. I really recommend disclosure to

people. (Erik, aged 27, university)

When I finally made up my mind to stop pretending.

In that moment, such an enormous weight fell off my

shoulders. Because you can finally stop being who

you ought to be. Instead, you can be who you are.

(Leon, aged 23, university)

Challenge 5: Mental Health Issues

Feeling Overwhelmed, Stressed, Anxious, Depressed, Tired

and Isolated As mentioned above, the students perceived

the three domains as inseparable, and the challenge con-

sisted precisely in the simultaneous combination of tasks

and challenges in the three domains.

I experience a lot of stress. Especially in organizing

everything: going to the store, going to classes,

having to study and cook and also having to invest in

social life. You have to organize it all by yourself.

That entails a lot of stress. (Leon, aged 23, university)

Facing all these things means that you get exhausted

extremely easily. This is a greatly underestimated

problem. The fact that you need to recover from

every little task, such as doing the dishes, is still not

accepted, and certainly not if you do not present with

obvious difficulties. (Linda, aged 23, university)

Students mentioned feeling overwhelmed, isolated,

tired, stressed, depressed, and anxious, at the same time

experiencing panic attacks and sweating.

I remember that I had a panic attack just before my

first exam. I was out of control. I was afraid to enter

the auditorium. I called my dad in a panic. He told me

what to do. Thanks to his guidance, I took my exam.

(Erik, aged 27, university)

At the moment of enrollment, I still remember how I

actually broke out in a sweat attack, even though it

was not exactly warm inside that room. I started

sweating and sweating, it was pouring off me. Just

because of the stress, but also because of the stress

release: Phew… it’s not going too badly after all. (Rik, aged 24, university)

The stress, anxiety and fatigue often became so over-

whelming that students genuinely worn out, causing a

disturbance of balance between studies, student life and

daily living. Disrupted circadian rhythm, depression and

reduced self-care were no exception.

I have been through very difficult periods in my

student days. When I was living in student accom-

modation for example, it actually took me a half

semester figuring out how to behave towards other

students. I was suddenly incapable of doing many

things that I was able to do before I started living in a

student flat. I did not know how to live anymore. How

to wash, my hygiene, cooking, eating: I ate uncooked

pasta and rice. Horribly distasteful! I stocked my

empty plastic bottles in the closet because I was

afraid to throw them in the recycling bin in the

kitchen. I delayed having a shower or going to the

toilet until the last moment. I did not know how to

behave anymore. I had completely lost all structure.

That lasted until sometime in the second semester of

the first year. (Erik, aged 27, university)

Students emphasized the difficulty to separate the three

domains from each other, and were well willing to par-

ticipate intensively in all domains, but this was impossible

related to increased burden. In order to get the three

domains more under control, students clearly preferred

living at home the first year, so they could become

accustomed to the challenges in the two other domains

before adding living challenges, and often switched to a

reduced course load.

Benefits

Despite these numerous challenges, students also men-

tioned talents and strengths, which they correlated with

their specific way of information processing, and which

contributed positively to all three domains. Qualities such

as a strong memory, focus precision and an eye for detail,

dedication, the ability of putting one’s mind to a subject,

analytical skills, and remarkable powers of observation

contributed to their ability to excel in specific courses and

disciplines, and to deliver work that meets high academic

standards.

Apparently, I am very good with numbers and at

comparing values, instantly noticing how these will

evolve in a graph. I am much better at that than other

J Autism Dev Disord (2015) 45:1673–1688 1681

123

in my class. My eyesight is also different from other

people’s. For example, I can distinguish different

colours through a microscope more clearly. One time

when we were studying cells in a histology seminar, I

could faintly distinguish the nucleus, even though the

lecturer could not. I then had to make it clear to her

that I had seen the nucleus through the microscope in

spite of the fact that she could not. It has its advan-

tages and disadvantages. (Peter, aged 21, university

college)

Students also mentioned qualities such as sincerity,

impartiality, and the willingness to listen to others. They

reported that these abilities benefitted their lives and daily

living, because they were highly valued by their friends

and families.

Friends often come to me to tell me their story. A lot

of my friends say me that they talk to me easily

because we can have an open conversation. I am free

of bias, in the sense that I just honestly tell them the

way things are. I do not beat around the bush, I am

not unfriendly, just honest. (Rosa, aged 21,

university)

Support Recommendations

Recommendation 1: A Personalized Approach

Students emphasized that support services should

implement a thoroughly personalized approach, in which

individualization and comprehensiveness are keywords.

The voice of the student should be given a more place

during the transition process and staff should be given

ample opportunity to take the personal preferences into

account when setting transition goals.

I always say: ‘If there are 6 million autistic peo-

ple, you have 6 million different types. It is a

really large tree and I represent only one tiny twig

of that tree. A tiny outgrowth on a branch, a

unique type.’ That’s what I am. Everyone has to

accept this with his or her own autism. (Rik, aged

24, university)

As mentioned above, students reported a lack of insight

into ASD among lecturers and student counselors and

stressed out that, without a high level of knowledge, sup-

port services were unlikely to function successfully. It was

suggested that an awareness program could contribute to

breaking down the perceived stigma and could at the same

time highlight the talents of students with ASD. The latter

might prevent staff’s limited perception of ASD, which

was very often reported to be the case.

Recommendation 2: A Safe and Transparent Environment

with Sufficient Planning and Clear Communication

Given that new situations are very unpredictable and cause

uncertainty, stress and anxiety, students emphasized the

necessity for institutions to provide a safe and transparent

education and living environment.

Prior to participating in the new activities, we should

be familiarized with the expectations of the new

environments by the support staff. This can be done

by providing a detailed description of the activities

and codes on how to behave during these activities,

conducting a tour of the campus and identifying

peaceful places, seeing the residence hall, etc. (Yves,

aged 19, university college)

Proactively providing planning tools, clear communi-

cation and concrete information, contributed to students’

understanding of what was expected of them, and to their

development of new routines. Additionally, having a con-

tact person who was sufficiently familiar with ASD who

the student could turn to with questions or at times of

confusion, contributed to them feeling safe.

Recommendation 3: Academic Accommodations

To overcome academic difficulties students applied for

academic accommodations or reasonable adjustments,

which they found imperative for their academic success

and wellbeing at university or college. The most requested

and granted accommodations include additional time in

written exams, extra preparation time for oral exams, a

wider distribution spread of exams in time (ideally with a

couple of days between every exam), having access to a

separate exam room and the option of doing alternative

assignments instead of group work. Students highlighted

that staff and other students need to understand the diver-

sity and complexity of ASD, and should listen to students’

experiences on what is useful. Measures that work well for

one student may not be appropriate for another student.

Recommendation 4: Coaching in Education, Student Life

and Daily Living

Besides being granted accommodations, students experi-

enced a need for coaching, both in the transition to, and as

well as in higher education itself. Students preferred one

designated person, a personal coach, to monitor and sup-

port their activities in the three domains.

The university college has a student counselor and

our contact is just very personal. I can simply go to

the consultation without any obligations, and she will

1682 J Autism Dev Disord (2015) 45:1673–1688

123

ask how she can help. So yes, some guidance is good

and necessary, rather than send an email if you have a

problem. I do not find it easy to ask for help, because

I can not always explain what I need, sometimes I do

not even realize I need some support. (Lieve, aged 20,

university college)

Students stressed out that the coaching should focus on

support with making choices (e.g., selecting a major, living

in residence), enhancing study approaches, daily and

vocational organization and skills, clarifying ambiguities

and providing feedback on difficulties and advice.

I find large projects most difficult, for which not all

tasks are defined in a concrete way. If I do not know

exactly on which task I need to perform and how

exactly to do this, I will easily procrastinate until the

very last moment. It is difficult to turn an abstract

idea or task into concrete actions in an effective way,

and to know exactly what is expected. I think one of

the most important things is to be given clear and

specific feedback. Look, this particular aspect of your

work is good. This is bad. Specific instructions from a

coach are very important. (Linda, aged 23, university)

Students believed less strongly in group training (e.g.,

social skills training) and clearly preferred to exchange

experiences with other students with ASD in a support

group. They were also in favour of gaining, as well as get

further insight into how the characteristics of their ASD

affected their information processing. Students were well

aware of their responsibilities in higher education, and

were often willing to be self-directed in their decisions and

learning. While a certain degree of coaching was necessary

for their optimal functioning, many students also

acknowledged that students with ASD will have to make

compromises.

People with autism should certainly be aware that a

world beyond their own exists as well. You are going to

have to live together with other people. You are going

to have to collaborate with others, and they will not be

able to work according to your pattern. Otherwise

things will get very difficult. (Rik, aged 24, university)

Recommendation 5: Adequate Psychosocial Support

I believe it to be very important for people with

autism to have access to psychological support.

Because of the exhaustion, and because of the stress,

this kind of support is really necessary to prevent or

cope with depression. (Linda, age 23, university)

Students found this critical support with their psychia-

trist or psychologist they had often been visiting for quite a

long time, but some students were confronted with limited

therapist availability. Students highlighted the importance

of support from their parents and family as their ‘real

caregivers’, and often attended a college near their home to

continue making use of this support.

Recommendation 6: Leisure Activities and a Sufficient

Amount of Rest

The most common strategy for managing anxiety and stress

for students was the escape by distraction. Students

emphasized the importance to make time for leisure

activities, and mentioned the importance of exploring

activities others than those in their areas of strong interest.

When too many of those things keep coming at me, I

really need to relax. When I start to run I have to

make less of an effort here (points at head) and more

there (points at heart). So, I try balancing things out

again. After running, I am much calmer as well. I can

think in a normal way again. I get back to a state

where the craziest things are no longer milling

through in my head. Instead, my mind goes back to

normal. (Leon, aged 23, university)

Sufficient rest to recuperate was also recommended. All

students except one embarked a full-time course when

enrolling in higher education, but almost half of them

switched to a reduced course load.

I have never taken on a full examination period. I was

always been able to postpone exams. In fact, each

year, I had three examination periods. One in Janu-

ary, one in June and one in September. And they were

needed. Part-time courses that now exist are neces-

sary for students with ASD because you need your

rest. (Jolanda, aged 20, university college)

Discussion

A first aim of the study was to identify challenges con-

cerning the general college and university experience

(education, student life and daily living) of students with

ASD, both in transition to and in higher education itself. In

line with previous research (Fleischer 2012; Madriaga

2010; Madriaga and Goodley 2010; Taylor 2005) we found

that students who fare in college or university face diffi-

culties with meeting the social and academic demands

placed on them and struggle with sensory overload and

time management. These challenges are clearly linked to

the core features of ASD (APA 2013) and the unique

cognitive style of individuals with ASD, which is charac-

terized by weak central coherence (Happé and Frith 2006),

J Autism Dev Disord (2015) 45:1673–1688 1683

123

difficulties with theory of mind (Astington and Jenkins

1995; Hill and Frith 2003; Senju 2013), and impairments of

executive function (Ozonoff et al. 1991; Hill 2004; Ro-

senthal et al. 2013). The results also correspond with the

general research outcomes that throughout adulthood,

individuals with ASD continue to struggle with issues

related to communication, social skills, repetitive behav-

iors, resistance to change and sensory challenges (Levy and

Perry 2011; Magiati et al. 2014). However, their different

way of processing information also gives rise to some

exceptional skills and talents, such as a strong memory,

focus precision and an eye for detail, dedication, the ability

of putting one’s mind to a subject, analytical skills,

remarkable powers of observation etc. and enables students

with ASD to excel in academic courses and disciplines and

to deliver very high quality work (Happé and Vital 2009).

Students with ASD experienced doubts about disclosure

(challenge four) and faced mental health issues. In line

with Matthews (2009) and Tinklin et al. (2005), students

with ASD appeared reluctant to disclose their disability to

academic staff and peers, and only decided to disclose

when they could not cope with the stress any longer, when

they felt safe and when experiencing a specific support

need. Because many students did not disclose their diag-

nosis, they were constantly trying hard to hide the chal-

lenges they faced, which caused stress and anxiety.

A remarkable fact is the high level of importance students

attributed to the mental health issues represented in Fig. 1.

They spoke a lot about fatigue, loneliness, feeling over-

whelmed and depressed, with stress and anxiety being the

most reported symptoms. The large amount of stress for stu-

dents with ASD in a university context has been described in

previous research (e.g., Glennon 2001), but is not yet exam-

ined (Pinder-Amaker 2014). Even though we did not inves-

tigatethistopic directly,our studyprovideda goodinsightinto

when and how students experience stress and anxiety. They

predominantly attributed the stress and anxiety to each of the

four challenges in each domain, and to the difficulties facing

these challenges in the three domains simultaneously. Stu-

dents felt overwhelmed, and stress, anxiety and fatigue often

became so excessive that they experienced feeling thoroughly

worn out. As such, the study confirms that the transition into

higher education constitutes a vulnerable period for youth

with ASD (e.g., Pinder-Amaker 2014; Friedman et al. 2013)

and corresponds with the findings that stress is related to

managing the decrease in planning and routine, to handling

increased academic and social demands in unfamiliar situa-

tions and to organizing own time and tasks (Glennon 2001;

Pugliese and White 2014). Moreover, it confirms the findings

of Gillott and Standen (2007), who examined anxiety and

stress among adults with ASD and found that increased levels

of anxiety impede the ability to cope with everyday stressors

and demands.

In line with Camarena and Sarigiani (2009) who con-

ducted a qualitative research on the aspirations of students

with ASD and their parents about post-secondary educa-

tion, it is highly striking that students with ASD were more

concerned about dealing with their social rather than with

academic challenges. Students realized how important

having a social network is in order to feel a sense of

belonging. This clear need for meaningful friendships and

relationships is in line with research outcome that many

adults with ASD desire social contacts (Tobin et al. 2014),

and confirms the suggestion that the desire for social

relations increases in many young adults with ASD

(McGovern and Sigman 2005). The awareness of their

social difficulties, the fear of saying the wrong things, and

the need to recover from additional stressors and distress

all had a negative impact on students’ confidence to

socially engage with others and to invest further in main-

taining contacts and friendships. The scarcity of relation-

ships led to high levels of loneliness and is in accordance

with the finding that individuals with ASD develop

heightened awareness of social isolation throughout ado-

lescence and (young) adulthood (e.g., Mazurek 2014; To-

bin et al. 2014; Whitehouse et al. 2009). Our study also

confirms that informal support from families, friends and

acquaintances is an important factor in relieving feelings of

isolation and loneliness (Tobin et al. 2014).

The second aim of the study was to identify support

needs of students with ASD, both in transition to and in

higher education itself. Students with ASD in higher edu-

cation were willing to fit in the three domains, as well as to

become self-directed in their decisions and learning. They

invested a lot effort in searching for ways of dealing with

the challenges themselves, but faced difficulties, especially

with regard to flexible problem solving skills and deter-

mining their own boundaries. Without support they quickly

‘‘drowned’’. Students recognized this risk and emphasized

the need for an individualized approach; a safe and trans-

parent environment with sufficient planning and clear

communication; academic accommodations; coaching

within all the three domains; psychosocial support; and a

sufficient amount of rest and leisure. The six themes of

recommendations (see Fig. 1) fit well with the recom-

mendations from clinicians and practitioners, found in the

reviews by Adreon and Durocher (2007) and VanBergeijk

et al. (2008), who recommend an individualized college

plan that delineates academic modifications, independent-

living skills, socialization skills and goals, vocational goals

and mental health support. However, instead of training,

students preferred individual coaching, as well as meeting

other students with ASD to listen to their experiences and

to discuss how they solve their problems. In order to gain

more experiences that are free from anxiety and excessive

stress, students pointed to the importance of being provided

1684 J Autism Dev Disord (2015) 45:1673–1688

123

with clear information and planning well in advance. They

also stressed the need for psychosocial support from pro-

fessionals, as well as from their parents (as ‘real caregiv-

ers’) and a contact person on campus (the disability

provider). Many researchers confirmed the crucial role of

parents during the transition into adulthood (Chiang et al.

2012; Doren et al. 2012; Taylor 2005; Smith and Anderson

2014) and the role of a ‘point person’ on campus to whom

the student could go for advice and support (Adreon and

Durocher 2007).

Recommendations for Institutions for Higher Education

As a result of this research we can formulate several rec-

ommendations for institutions for higher education. Firstly,

there is a need for more extensive and effective coaching of

students with ASD. The study clearly shows that the pro-

vision of reasonable accommodations and the study skills

training (academic support) is insufficient, as it currently

exists in Flanders. Support must extend beyond academic

interventions, and also offer transitional support, support in

student life and daily living. Secondly, students should be

involved in the transition planning in order to discuss

which support has proved effective for them in the past,

and how that can be implemented in higher education. This

can be realized by working with an individualized college

plan (see Pinder-Amaker 2014). Thirdly, students prefer

individual coaching in all three domains to training pro-

grams. Given that students with ASD are at a heightened

risk for academic and personal failure during the college

years, it extends the recommendation that the coach meets

the student regularly, supervises the challenges and activ-

ities in all three domains, both in the transition to and in

higher education itself. The coach may clarify ambiguities,

provide advice and feedback on difficulties, and monitor

the well being of the student in order to avoid the risk of

additional psychopathology. Furthermore, students high-

light the need for adequate individual psychological sup-

port to overcome mental health issues. Since the

entitlement to the children’s service system ends in the

transition to adulthood (Friedman et al. 2013; Pinder-

Amaker 2014), it is important that adequate psychological

support services are available in the course of the college

period. Students also point out the need for support groups

where they can meet other students with ASD and where

they can share experiences and discuss how they solve their

problems. Finally, there is a need for a better awareness

among staff and students about ASD, and the way in which

it can affects navigating in college. Awareness programs

could help to break the current stereotypes, stigma and

misunderstanding about students with ASD. Moreover, it is

both beneficial and important for an academic environment

to nurture an atmosphere where students are given the

opportunity to disclose to others who they are in a safe

way, and encouraged to be themselves, instead of feeling

the need to hide their identity.

Limitations and Future Research

Some limitations should be acknowledged when interpreting

the results of this study. Firstly, although the participants in

our study were taking different majors at different univer-

sities and university colleges, lived in different geographical

areas in Flanders, and varied in age and diagnostic subcate-

gory, a selection bias may have affected our findings. Stu-

dents who participated in the interviews were those willing to

attend a scheduled meeting and discuss their experiences

(Morrison et al. 2009). The sample may have reflected those

who were more actively participating in transition planning

or possessed a higher level of insight regarding their ASD

(Morrison et al. 2009). Most participants had a very good

understanding of their ASD. Secondly, our study relied on

self-report qualitative data only. Given that students with

ASD experience difficulties with theory of mind and men-

tioned problems with reflective thinking, it would also be

valuable to examine the perceptions of their parents, of their

disability providers and of the informal network which

supports them, in order to identify additional opinions and

support needs. Given the significant role that students gave to

their parents, and the fact that some studies demonstrated that

parents’ involvement had a positive influence in postsec-

ondary education outcome (Chiang et al. 2012; Doren et al.

2012), it would be appropriate for future research to focus on

parent’s potential role in the transition to higher education.

Thirdly, the use of a qualitative research only measures

perceptions of the participants, and does not allow for a more

direct measurement of the actual presence or absence of

factors within college or university environments that are

supportive or challenging (Morrison et al. 2009). Future

studies should thus ideally also include standardized mea-

sures (e.g., stress and anxiety) to achieve a wider charac-

terization of the experiences and outcome of students.

Finally, future research should also focus on the develop-

ment of evidence-based intervention services to moderate

the impact of mental health issues, in which their impact on

mental health and academic outcomes among students with

ASD must be evaluated (Pinder-Amaker 2014).

Conclusion

The current study provided a better insight into how stu-

dents with ASD fare in higher education, and has added

valuable information to the growing body of literature on

students’ perspectives on challenges and effective support

in higher education for students with ASD. The main

J Autism Dev Disord (2015) 45:1673–1688 1685

123

strength of the study is that we systematically examined

first-person accounts on the holistic college and university

experience. This wide perspective clarifies the ways in

which students correlate the various challenges and which

aspects they find meaningful and supportive to include in

their support plan in order to moderate the impact of

challenges and mental health issues. The wide perspective

also provided insight into the strengths and talents of stu-

dents with ASD due to a different way of processing

information. These abilities were shown to contribute to

benefits in the three domains. In addition to this clinical

value, the study has an educational and a social value as

well. The experiences of students significantly enhance our

understanding of what it means to study with ASD. This

can now be passed on to academic staff, counselors and the

students’ wider networks. If these partners take into

account the unique and individual needs and strengths of a

student with ASD and offer appropriate support and

accommodations in education, student life and daily living,

young adults with ASD will potentially show higher

retention and an enhanced quality of life. Taking into

account the recommendations of students with ASD, will

not only benefit other students with ASD, but can also

contribute to a better, more accessible and inclusive

education.

Acknowledgments We would like to express our sincere gratitude to the participants in this study who shared their experiences and

insights.

Conflict of interest The authors declare that they have no conflict of interest.

References

Adreon, D., & Durocher, J. S. (2007). Evaluating the college

transition needs of individuals with high-functioning autism

spectrum disorders. Intervention in School and Clinic, 42(5),

271–279. doi:10.1177/10534512070420050201.

American Psychiatric Assocation. (2013). Diagnostic and statistical

manual of mental disorders (5th ed.). Arlington, VA: American

Psychiatric Press.

American Psychiatric Association. (2000). Diagnostic and statistical

manual of mental disorders (4th ed. text revision). Washington,

DC: American Psychiatric Association.

Astington, J. W., & Jenkins, J. M. (1995). Theory of mind

development and social understanding. Cognition and Emotion,

9(2–3), 151–165. doi:10.1080/02699939508409006.

Barnhill, G. P. (2014). Supporting students with Asperger syndrome on

college campuses: Current practices. Focus on Autism and Other

developmental Disabilities. doi:10.1177/1088357614523121

Barriball, B. R., & While, A. (1994). Collecting data using a semi-

structured interview: A discussion paper. Journal of Advanced

Nursing, 19(2), 328–335. doi:10.1111/j.1365-2648.1994.tb01088.x.

Bogdan, R. C., & Biklen, S. K. (1998). Qualitative research in

education: An introduction to theory and methods (3rd ed.).

Boston: Allyn & Bacon.

Brugha, S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J.,

et al. (2011). Epidemiology of autism spectrum disorders in

adults in the community in England. Archives of General

Psychiatry, 68(5), 459–465. doi:10.1001/archgenpsychiatry.

2011.38.

Camarena, P. M., & Sarigiani, P. A. (2009). Postsecondary educa-

tional aspirations of high-functioning adolescents with autism

spectrum disorders and their parents. Focus on Autism and Other

Developmental Disabilities, 24(2), 115–128. doi:10.1177/

1088357609332675.

Centers for Disease Control and Prevention. (2014). Prevalence of

autism spectrum disorder among children aged years—Autism

and developmental disabilities, Monitoring Network, United

States, 2010. MMWR Surveillance Summaries, 63(2), 1–22.

Chiang, H., Cheung, Y. K., Hickson, L., Xiang, R., & Tsai, L. Y.

(2012). Predictive factors of participation in postsecondary

education for high school leavers with autism. Journal of Autism

and Developmental Disorder, 42(5), 685–696. doi:10.1007/

s10803-011-1297-7.

Corbin, J., & Strauss, A. (2008). Basics of qualitative research (3rd

ed.). London: Sage.

Davidovitch, M., Hemo, B., Manninhg-Coutney, P., & Fombonne, E.

(2013). Prevalence and incidence of autism spectrum disorder in

an Israeli population. Journal of Autism and Developmental

Disorders, 43(4), 785–793. doi:10.1007/s10803-012-1611-z.

Doren, B., Gau, J. M., & Lindstrom, L. E. (2012). The relationship

between parent expectations and postschool outcomes of

adolescents with disabilities. Exceptional Children, 79(1),

7–23.

Elsabbagh, M., Divan, G., Koh, Y., Kim, Y., Kauchali, S., Marcı́n, C.,

et al. (2012). Global prevalence of autism and other pervasive

developmental disorders. Autism Research, 5(3), 160–179.

doi:10.1002/aur.239.

Fleischer, A. S. (2012). Alienation and struggle: Everyday student-life

of three male students with Asperger Syndrome. Scandinavian

Journal of Disability Research, 14(2), 177–194. doi:10.1080/

15017419.2011.558236.

Fombonne, E., Quircke, S., & Hagen, A. (2011). Epidemiology of

autism spectrum disorders. In D. G. Amaral, G. Dawson, & D.

H. Geschwind (Eds.), Autism spectrum disorders (pp. 90–111).

Oxford: Oxford University Press.

Friedman, N. D. B., Warfield, M. E., & Parish, S. L. (2013).

Transition to adulthood for individuals with autism spectrum

disorder: Current issues and future perspectives. Neuropsychia-

try, 3(2), 181–192. doi:10.2217/NPY.13.13.

Gelbar, N. W., Smith, I., & Reichow, B. (2014). Systematic review of

articles describing experience and supports of individuals with

autism enrolled in college and university programs. Journal of

Autism and Developmental Disorders, 44(10), 2593–2601.

doi:10.1007/s10803-014-2135-5.

Gillott, A., & Standen, P. J. (2007). Levels of anxiety and sources of

stress in adults with autism. Journal of Intellectual Disabilities,

11, 359–370. doi:10.1177/1744629507083585.

Glennon, T. J. (2001). The stress of the university experience for

students with Asperger syndrome. Work: A Journal of Preven-

tion, Assessment and Rehabilitation, 17(3), 183–190.

Griffith, G. M. (2012). ‘I just don’t fit anywhere’: Support experiences

and future support needs of individuals with Asperger syndrome

in middle adulthood. Autism, 6(5), 532–546. doi:10.1177/

1362361311405223.

Happé, F., & Frith, U. (2006). The weak coherence account: Detail-

focused cognitive style in autism spectrum disorders. Journal

Autism and Developmental Disorders, 36(1), 5–25. doi:10.1007/

s10803-005-0039-0.

Happé, F., & Vital, P. (2009). What aspects of autism predispose to

talent? Philosophical Transactions of the Royal Society

1686 J Autism Dev Disord (2015) 45:1673–1688

123

B-Biological Sciences, 364(1522), 1369–1375. doi:10.1098/rstb.

2008.0332.

Hill, E. L. (2004). Executive dysfunction in autism. Trends in

Cognitive Sciences, 8(1), 26–32. doi:10.1016/j.tics.2003.11.003.

Hill, E. L., & Frith, U. (2003). Understanding autism: Insights from

mind and brain. Philosophical Transactions of the Royal Society

B-Biological Sciences, 358(1430), 281–289. doi:10.1098/rstb.

2002.1209.

Humphrey, N., & Lewis, S. (2008). ‘Make me normal’: The views

and experiences of pupils on the autistic spectrum in mainstream

secondary schools. Autism, 12(1), 23–46. doi:10.1177/

1362361307085267.

Kapp, S. K., Gantman, A., & Laugeson, E. A. (2011). Transition to

adulthood for high-functioning individuals with autism spectrum

disorders. In M. R. Mohammadi (Ed.), A comprehensive book on

autism spectrum disorders (pp. 451–478). InTech. doi:10.5772/

21506

Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults

with autism: A review of the literature. Research in Autism

Spectrum Disorders, 5(4), 1271–1282. doi:10.1016/j.rasd.2011.

01.023.

Lincoln, Y. S. (1995). Emerging criteria for quality in qualitative and

interpretive research. Qualitative Inquiry, 1, 275–289. doi:10.

1177/107780049500100301.

Madriaga, M. (2010). ‘I avoid pubs and the student union like the

plague’: Students with Asperger syndrome and their negotiation

of university spaces. Children’s Geographies, 8(1), 39–50.

doi:10.1080/14733280903500166.

Madriaga, M., & Goodley, D. (2010). Moving beyond the minimum:

Socially just pedagogies and Asperger’s syndrome in UK higher

education. International Journal of Inclusive Education, 14(2),

115–131. doi:10.1080/13603110802504168.

Magiati, I., Tay, X. W., & Howlin, P. (2014). Cognitive, language,

social and behavioural outcomes in adults with autism spectrum

disorders: A systematic review of longitudinal follow-up studies

in adulthood. Clinical Psychology Review, 34(1), 73–86. doi:10.

1016/j.cpr.2013.11.002.

Matthews, N. (2009). Teaching the ‘invisible’ students in the

classroom: Disclosure, inclusion and the social model of

disability. Teaching in Higher Education, 14(3), 229–239.

doi:10.1080/13562510902898809.

Mazurek, M. O. (2014). Loneliness, friendship, and well-being in

adults with autism spectrum disorders. Autism, 18(3), 223–232.

doi:10.1177/1362361312474121.

McGovern, C., & Sigman, M. (2005). Continuity and change from

early childhood to adolescence in autism. Journal of Child

Psychology and Psychiatry, 46, 401–408. doi:10.1111/j.1469-

7610.2004.00361.x.

Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis,

an expanded sourcebook (2nd ed.). London: Sage Publications.

Morrison, J. Q., Sansosti, F. J., & Hadley, W. M. (2009). Parent

perceptions of the anticipated needs and expectations for support

for their college-bound students with Asperger’s syndrome.

Journal of Postsecondary Education and Disability, 22(2),

78–87.

Mortelmans, D. (2011). Handboek kwalitatieve onderzoeksmethoden.

Leuven: Acco.

Müller, E., Schuler, A., & Yates, G. B. (2008). Social challenges and

supports from the perspective of individuals with Asperger

syndrome and other autism spectrum disabilities. Autism, 12(2),

173–190. doi:10.1177/1362361307086664.

Ozonoff, S., Pennington, B., & Rogers, S. (1991). Executive function

deficits in higher education in higher functioning autistic

individuals: Relationship to theory of mind. Journal of Child

Psychology and Psychiatry, 32, 1081–1105.

Pillay, Y., & Bhat, C. S. (2012). Facilitating support for students with

Asperger’s syndrome. Journal of College Student Psychother-

apy, 26(2), 140–154.

Pinder-Amaker, S. (2014). Identifying the unmet needs of college

students on the autism spectrum. Harvard Review of Psychiatry,

22(2), 125–137. doi:10.1097/HRP.0000000000000032.

Pugliese, C. E., & White, S. W. (2014). Brief report: Problem solving

therapy in college students with autism spectrum disorders:

Feasibility and preliminary efficacy. Journal of Autism and

Developmental Disorders, 44(3), 719–729. doi:10.1007/s10803-

013-1914-8.

QSR International. (2012). NVivo qualitative data analysis software

(version 10). Victoria: QSR International Pty Ltd.

Rosenthal, M., Wallace, G. L., Lawson, R., Willis, M. C., Dixon, E.,

Yeris, B. E., & Kenworthy, L. (2013). Impairments in real-world

executive function increase from childhood to adolescence in

autism spectrum disorders. Neuropsychology, 27(1), 13–18.

doi:10.1037/a0031299.

Sanford, C., Newman, L., Wagner, M., Cameto, R., Knokey, A. M., &

Shaver, D. (2011). The post-high school outcomes of young

adults with disabilities up to 6 years after high school. Menlo

Park, CA: SRI International.

Schieve, L. A., Rice, C., Yeargin-Allsopp, M., Boyle, C. A., Kogan,

M. D., Drews, C., & Devine, O. (2012). Parent-reported

prevalence of autism spectrum disorders in US-born children:

An assessment of changes within birth cohorts from the 2003 to

the 2007 national survey of children’s health. Maternal Child

and Health Journal, 16(1), 151–157. doi:10.1007/s10995-012-

1004-0.

Senju, A. (2013). Atypical development of spontaneous social

cognition in autism spectrum disorders. Brain and Developmen-

tal, 35, 96–101. doi:10.1016/j.braindev.2012.08.002.

Shattuck, P. T., Narendörf, S. C., Cooper, B., Sterzing, P. R., Wagner,

M., & Taylor, L. J. (2012). Postsecondary education and

employment among youth with an autism spectrum disorder.

Pediatrics, 129, 1042–1049. doi:10.1542/peds.2011-2864.

Smith, L. E., & Anderson, K. A. (2014). The roles and needs of

families of adolescents with ASD. Remedial and Special

Education, 35(2), 114–122. doi:10.1177/0741932513514616.

Taylor, M. J. (2005). Teaching student with autistic spectrum in HE.

Education and Training, 47(7), 484–495. doi:10.1108/

00400910510626330.

Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-

secondary educational activities for young adults with autism

spectrum disorders during the transition to adulthood. Journal of

Autism Developmental Disorders, 41(5), 566–574. doi:10.1007/

s10803-010-1070-3.

Tinklin, T., Riddell, S., & Wilson, A. (2005). Support for students

with mental health difficulties in higher education: The students’

perspective. British Journal of Guidance & Counselling, 33(4),

495–512. doi:10.1080/03069880500327496.

Tobin, M. C., Drager, K. D. R., & Richardson, L. F. (2014). A

systematic review of social participation for adults with autism

spectrum disorders: Support, social functioning, and quality of

life. Research in Autism Spectrum Disorders, 8(3), 214–229.

doi:10.1016/j.rasd.2013.12.002.

United Nations. (2006). UN—Convention on the rights of persons

with disabilities. New York: United Nations.

VanBergeijk, E., Klin, A., & Volkmar, F. (2008). Supporting more

able students on the autism spectrum: College and beyond.

Journal of Autism and Developmental Disorders, 38(7),

1359–1370. doi:10.1007/s10803-007-0524-8.

White, S. W., Ollendick, T. H., & Bray, B. C. (2011). College

students on the autism spectrum. Autism, 15(6), 683–701. doi:10.

1177/1362361310393363.

J Autism Dev Disord (2015) 45:1673–1688 1687

123

Whitehouse, A. J., Durkin, K., Jaquet, E., & Ziatas, K. (2009).

Friendship, loneliness and depression in adolescents with

Asperger’s syndrome. Journal of Adolescence, 32(2), 309–322.

doi:10.1016/j.adolescence.2008.03.004.

Zager, D., & Alpern, C. (2010). College-based inclusion program-

ming for transition-age students with autism. Focus on Autism

and Other Developmental Disabilities, 25(3), 151–157. doi:10.

1177/1088357610371331.

1688 J Autism Dev Disord (2015) 45:1673–1688

123

Copyright of Journal of Autism & Developmental Disorders is the property of Springer Science & Business Media B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.