Adapted Physical Activity Quarterly, (Ahead of Print)

https://doi.org/10.1123/apaq.2016-0099
© 2017 Human Kinetics, Inc. ORIGINAL RESEARCH

Parents’ Perspectives of Physical

Activity in Their Adult Children With
Autism Spectrum Disorder:
A Social-Ecological Approach
Alice M. Buchanan and Benjamin Miedema
Auburn University

Georgia C. Frey
Indiana University

The purpose of this study was to investigate parent perceptions of the physical
activity (PA) engagement of their adult children with autism spectrum disorders.
The theoretical framework used in this study was social ecology. Participants were
nine parents from families with one adult child with autism spectrum disorder
whose ages ranged from 18 to 42. Using phenomenological interviews, which
explored parents’ life experience and meaning making, four themes were generat-
ed: supports and advocacy for PA, engaging in PA independently, benefits of PA,
and barriers to or reasons for disengaging in particular activities. Parents’ interview
comments showed that intrapersonal factors, interpersonal relationships, and
community factors were essential for keeping the individuals with autism spectrum
disorder engaged in PA. Families and practitioners can take advantage of that by
seeking PA opportunities in community settings or with other individuals.

Keywords: benefits of physical activity, physical activity and support, qualitative

inquiry

Physical inactivity today is considered a significant public health problem due

to its documented negative impact on quality of life (Sallis, Owen, & Fisher,
2008). Indeed, it has become axiomatic to say that physical activity (PA) is vital to
good physical, mental, and emotional health. Nonetheless, people with disabilities
often do not get enough PA to reap its benefits (Esposito, Macdonald, Hornyak, &
Ulrich, 2012), and, like their peers without disability, their activity levels tend to
decrease as they age (Pan & Frey, 2006; Sorensen & Zarrett, 2014).

Buchanan and Miedema are with the School of Kinesiology, Auburn University, Auburn, AL. Frey is
with the Dept. of Kinesiology, Indiana University, Bloomington, IN. Address author correspondence to
Alice M. Buchanan at buchaa2@auburn.edu.

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 2 Buchanan, Miedema, and Frey

Very limited research exists addressing either PA as a health behavior or the

factors that influence PA in adults with autism spectrum disorder (ASD). To date,
we found only one study that specifically reported PA levels in a sample of adults
with ASD (Eaves & Ho, 2008). Eaves and Ho conducted a longitudinal study on
outcomes in individuals with ASD during childhood, early adolescence, and
young adulthood and found that less than half of the young adults ages 19–31
years in their sample engaged in moderate or vigorous PA at least once per week.
In addition, these individuals spent 13 hr per day sitting. PA and exercise have
been used with some success as social skill or behavior interventions in people
with ASD, but again this research is limited (Lang et al., 2010). Perceptions
regarding PA and adults with ASD are often inferred from studies on youth, and
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these findings are generally consistent that these individuals are less active than
peers without disabilities, and PA decreases with age (Frey, Buchanan, & Rosser-
Sandt, 2005; King et al., 2003; Macdonald, Esposito, & Ulrich, 2011; Pan & Frey,
2006). The common trajectory observed in people without ASD is that there is a
decline in PA from childhood through the transition to adulthood (Troiano et al.,
2008). Based on the high incidence of co-occurring hypoactive diseases observed
in adults with ASD such as obesity, hyperlipidemia, and hypertension (Tyler,
Schramm, Karafa, & Tang, 2011), as well as the report from Eaves and Ho (2008),
it is reasonable to assume that this pattern also occurs in those with ASD.
Adults with ASD experience significant disadvantages in many life domains,
including physical and mental health (Howlin & Moss, 2012), exhibition of poor
overall health profiles, and higher risk for chronic disease compared with adults
without ASD (Tyler et al., 2011). As such, it is important to identify factors that
influence health behaviors in adults with ASD to better inform intervention
(Howlin & Taylor, 2015; Warren, Taylor, McPheeters, Worley, & Veenstra-
Vander Weele, 2012). It is well documented that adults with ASD and their parents
experience many challenges with the transition to adulthood across multiple
domains (Howlin & Moss, 2012), but it is unclear how the transition to adult PA
behaviors occurs in this population, particularly when school-based opportunities
are no longer available. Shattuck, Wagner, Narendorf, Sterzing, and Hensley
(2011) documented that services for people with ASD declined significantly
during the transition to adulthood, and approximately 39% of the participants in
their survey received no services. This information suggests that PA services for
adults with ASD are also likely lacking, and this is supported by anecdotal parent
reports of limited integrated or segregated PA opportunities for adolescents with
ASD (Pan & Frey, 2006).
In this context, it is frequently left to parents to be the key providers of
opportunities beyond school for their adult children with ASD to engage in PA.
However, to date, there is only one study on this topic where parents reported that
factors such as cost, lack of athleticism, lack of a partner or leader, symptoms of
the disability, and lack of energy have impacted the PA participation of their adult
children with ASD (Eaves & Ho, 2008). Although parent support is a primary
determinant of PA in youth without ASD (Trost et al., 2003), this has not been
substantiated in those with ASD (Pan & Frey, 2006). Pan and Frey found that
parent support neither was associated with nor explained the variance in PA in
youth with ASD. The authors suggested that this surprising finding was because
parent supports were not potent enough to overcome societal barriers to their

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 Physical Activity in Adults With ASD 3

children participating in PA. Other parent reports on PA barriers for children with
ASD revealed a variety of factors such as lack of adults to direct activities, poor
social skills, limited friendships, parent time and transportation constraints, and
lack of peer support (Must, Phillips, Curtin, & Bandini, 2015; Obrusnikova &
Miccinello, 2012).
Similar data on the influence of parents on the PA of their adult children with
ASD are lacking but important to explore because research indicates that few
adults with ASD are independent and most reside in some type of supervised
living, typically with family (Hewitt et al., 2017). Individuals with ASD are more
dependent on their parents for providing basic needs throughout the lifespan
compared with other disability groups and those without disabilities (Schall,
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Wehman, & Carr, 2014). The efforts of parents of individuals with ASD to provide
PA opportunities are hampered by multiple factors; however, the nature and extent
of these factors are not well understood. The purpose of this study is to expand the
limited available research by exploring the nature and context of parent percep-
tions of PA for their adult children with ASD. This effort supports the recent
calls for more research on the lived experiences and health of adults with ASD
(Howlin & Taylor, 2015; Warren et al., 2012).

Theoretical Framework
Social-ecological theory as described by Bronfenbrenner (1979) holds that the
environment and the individuals in it continuously interact to shape one another.
This theory as it is conceptualized today was proposed in the 1970s by Bronfen-
brenner due to its utility in illustrating multiple levels of an individuals’ life as he
or she interacts with others and the environment. Bronfenbrenner’s theory
described multiple interconnectedness between and among individuals and other
people, settings in which the person participates, and settings in which the person
does not participate but that nonetheless impact the individual and the other
variables. When considering these factors as interrelated, they can be understood
as common to a shared culture (Bronfenbrenner, 1979). Such a perspective makes
the framework appropriate for exploring the complex factors that mediate and
obstruct relationships between and among individuals, their families, and their
environments (King et al., 2003).
McLeroy, Bibeau, Steckler, and Glanz (1988) applied the social-ecological
model to health promotion in stating that health promotion interventions play a
direct role in the maintenance of healthy lifestyles and should be aimed at the
factors that interact to influence lifestyle. McLeroy et al. (1988) modified
Bronfenbrenner’s nomenclature, referring to the multiple, interconnected factors
as intrapersonal, interpersonal, institutional, community, and public policies (see
Table 1). Sallis, Bauman, and Pratt (1998) used similar language in an extensive
review of research showing that influences placed by environmental, policy,
intrapersonal, and interpersonal variables can explain and mediate behavioral
phenomena.
Over the years, social-ecological models continue to have much promise in
research on PA and health promotion (Taliaferro & Hammond, 2016). Taliaferro
and Hammond assert that a social-ecological framework is distinctive in its ability
to examine the multiple health promotion impacts of factors such as those listed

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 4 Buchanan, Miedema, and Frey

Table 1 An Ecological Model for Health Promotion

Factors Description
Intrapersonal factors Characteristics within the individual such as self-concept, beliefs,
and developmental history.
Interpersonal factors Refers to family systems, social groups, friends, and acquaintances.
Institutional factors Places with their own rules and regulations such as school, work,
church, home, and other places in which the person spends con-
siderable time.
Community factors The relationship between and among institutions. Examples are
community resources such as fitness centers, sheltered workshops,
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and housing and/or job support.

Public policy Policies and laws at all levels from local to national. Two examples
are Medicaid and the Individuals with Disabilities Education
Improvement Act.
Note. Adapted from “An Ecological Perspective on Health Promotion Programs,” by K.R. McLeroy,
D. Biberau, A. Steckler, and A. Glanz, 1988, Health Education Quarterly, 15, pp. 351–377.

above. Sallis et al. (1998) assert that “ecological models are particularly applicable
to PA” (p. 379) because participation is often restricted by places and settings.
Indeed, physical environments, as well as social and cultural values, are all aspects
of ecological models that are known to guide behavior.
Because of our focus on parents’ perspectives of their adult children with ASD,
we conducted this study through the lens of social ecology. Individuals continu-
ously interact with their environments, and consequently, people are impacted by
their environments, which in turn function to shape aspects of the individual
(Lounsbury & Mitchell, 2009). It is the interrelated dynamics within the factors that
can greatly influence an individual’s behavior, including the PA of an individual
with ASD. We chose to use the social-ecological model because of its usefulness in
providing a greater depth of understanding of contextual influences (Fleury & Lee,
2006) such as supports and resources for PA available to individuals with ASD.

Methods
Phenomenology is identified by Lounsbury and Mitchell (2009) as a fitting way of
understanding the social ecology of individuals and the contexts in which they live
and function. This phenomenological study was conducted to explore the lived
experience of being the parent of an adult child on the autism spectrum, with
particular attention to the child’s engagement in PA and the contexts which
influence that PA. Phenomenology was the appropriate epistemological stance
because we sought to “reveal meaning and to understand how that meaning is
connected to a person’s life experience” (Stringer, 2004, p. 25).
Central to phenomenology is reflexivity, which relies on accounting for the
roles of the participants and the researchers, and acknowledging the preconcep-
tions that may accompany these (Mordal-Moen & Green, 2014). All of the authors
are university adapted physical educators, and two of us interacted with the
participants. We were known to the parents as doing the same type of work, albeit

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 Physical Activity in Adults With ASD 5

at different universities. As our role was that of university faculty, we were keen to
be mindful that we could be perceived as “experts.” As none of us had children
with ASD or any disability, we stressed to the parents that their role was of expert,
and we were asking them to share their expertise with us. We made a point of
telling the participants that we were there to understand their life world and to
garner their perceptions of their children’s PA life. To emphasize this, we
scheduled interviews around their schedules and in locations they chose. We
kept a reflective journal for reference and devoted much time to interacting with
and questioning one another, and challenging our assumptions regarding indivi-
duals with disabilities, in particular ASD.
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Participants
Nine parents—two parent couples and five mothers (seven discrete families) of
adults with ASD—volunteered to participate in this study. Six parents were
purposively sampled from a PA program for youth with disabilities in which their
children were either currently enrolled or were former participants, and the
primary investigator knew three more parents who met the inclusion criteria.
The specific parents were sampled because they had an adult child with ASD who
(a) was free from co-occurring disabilities that could impede or interfere with
movement, (b) was capable of making PA choices and exhibiting preferences for
activity, and (c) had been engaged in nonschool-based PA either independently or
through a program. Six of the parents were from the midwest United States, and
three were from the southeastern United States. We reduced the risk of coercion by
assuring the parents of confidentiality that they could have access to data anytime,
and that they could withdraw from the study anytime.
The ages of those with ASD ranged from 18 to 42. The Institutional Review
Boards from both universities involved in the project approved the study. The
parents, who were also the primary guardians, provided written consent to be
interviewed and to have the interview audio recorded and transcribed. All of the
names of the participants, adult children, siblings, and agencies are pseudonyms.
See Table 2 for ages and other information.

Data Collection
We interviewed nine parents, representing seven families. Each of the seven
families had one adult child with ASD. Because of the communication and social
difficulties experienced by individuals with ASD, parents are frequently called
upon by researchers to speak for their adult children (Temple, Frey, & Stanish,
2006). In this study, the parents were not asked to serve as “proxies” (Sheldrick,
Neger, Shipman, & Perrin, 2012); that is, they were not asked to say things in ways
they thought their child would answer. Rather, the parents were asked to provide
their own perspectives as they engaged in the interviews.
A list of potential questions was generated by the first and third authors to
facilitate the interviews. Most of the questions were open ended. We told the
participants that we were focusing on PA (and on transition for a future study) and
started with generic questions such as demographic data. Examples of specific
questions are

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Table 2 Participants and Their Adult Children
Name of Age of
Guardian name Guardian adult child adult Age or grade Type of class Postsecondary
(pseudonym) role (pseudonym) child at diagnosis in school education Current status
Eliza Mother Jake 22 Fourth grade General edition Some Lives at home
with resource
Jackie Mother Mark 21 Age 3 General edition No Works at movie theatre
with aide and lives at home
Jessica Mother Sarah 19 Age 20 months Community based Still in HS Lives at home
(self-contained)
Julia Mother Henry David 40 Age 4 General edition Master’s degree Lives at home
Mary Anne and Parents Eli 42 Around age 28 Special edition No Works in restaurant and
Charlie lives independently
Nancy and Mason Parents Gary 18 Around age 3 Special edition Still in HS Lives at home
Nicole Mother Noah 25 First grade General edition Some Works in restaurant and

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with resource lives at home
 Physical Activity in Adults With ASD 7

What was her physical education experience like?

Was there adapted PE in his school?
What does she like to do in her leisure time?
PA was not explicitly defined unless the participant asked, and responses
such as martial arts, walking, swimming, and treadmill walking all were
accepted.
The interviews were recorded with a Samsung Galaxy S4 phone and were
transcribed by the first author, who also was the interviewer, or by a professional
transcriber. Each parent or parent couple was interviewed face-to-face one time. A
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follow-up interview was conducted by email in which we asked the parents

questions based on information that surfaced as a result of data analysis. Each
face-to-face interview lasted approximately 1–2 hr and took place at a location
chosen by the participant.
The data were made available to the participants for member checking (Lincoln
& Guba, 1985) throughout the study, thus assuring credibility. Sparkes and Smith
(2014) note that the participant perspectives presented by the researcher should be
“recognizable to the participants who provided them and that they agree it is an
accurate interpretations of events” (p. 190). Thus, after transcribing, we sent the
interviews to the respective participant for review. None of the participants made any
corrections. When the results section was written, we conducted another member
check by email to follow up and ensure that our interpretations were in line with the
meanings made by the parents. Again, the parents did not offer any corrections,
although a few made additions to the data, such as that Henry David added water
walking to his PA, and that Noah had recently participated in Challenger League
baseball.
Care was taken throughout the process to ensure quality so that transferability
could occur. Sparkes and Smith (2014) note that shifting contexts implicit in
qualitative research impact quality and transferability. Thus, the reader makes the
decision of transferability based on the degree of similarity between the contexts
(Lincoln & Guba, 1985). Use of probing during the interviews and sharing of
analysis and results with the participants contributed to transferability. We
addressed dependability and confirmability (Lincoln & Guba, 1985) with a
detailed audit trail. Our attention to such criteria of quality firmly established
the trustworthiness of the research.

Data Analysis
Data were analyzed by breaking them down into units of meaning (Lincoln & Guba,
1985) and separating them into relevant categories. This involved reading the
transcripts, breaking the data into manageable categories, and naming categories as
meaning emerged. We used constant comparison (Lincoln & Guba, 1985) to
identify patterns and themes within the narratives. The three authors and a doctoral
student completed the data analysis. Having at least two people, and sometimes
three, engaged in the analysis at any one time helped improve the dependability and
confirmability of the findings. This process involved revisiting the transcripts as
well as the recorded interviews to preserve context and ensure the integrity of the

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 8 Buchanan, Miedema, and Frey

participants’ perceptions. Each group of data was reanalyzed to confirm member-

ship in that category or to locate it to a different one. Following the identification of
common themes throughout the data, we began the interpretation process.

Results
The data analysis resulted in four themes related to parents’ perceptions of PA for
their adult child with ASD. The themes were supports and advocacy for PA,
engaging in PA independently, benefits of PA, and barriers to or reasons for
disengaging in particular activities. We used participant quotes to begin each
section to exemplify the theme and capture the essence of the parents’ perceptions.
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Supports and Advocacy for PA

Nicole recalled one of the many strategies she used to keep Noah active:
Noah had been asking me to take him and different buddies for pizza on
Saturdays, so I finally said, “For every five days that you run [cross country],
whether it’s a practice or a meet, I’ll take you and a buddy to lunch on
Saturday. You can pick the buddy and the place.” That was enough, he ran
cross country again that year.
All of the parents valued PA and wanted their children to get enough,
whether or not they were active themselves. They became skilled at finding
services to support their efforts. Their concerns varied—“to ward off his
anxiety,” “so she won’t gain weight,” “so he’ll keep busy,” or “so she can
continue to do this after I am gone.” The parents related the struggles they
encountered as they encouraged their adult children to be active. Julia noted that
her son, who at 40 was older than most of the other adult children, might reduce
his anxiety by doing Tai Chi:
We tried Tai Chi, but he absolutely refuses. Even meditative breathing, like Qi
Gong. Well I tried to do Qi Gong with him. I wish I could convince him to go,
but I just can’t.
Jackie illustrated how her son Mark, at 21, had something nearly every day
when she said, “We have Special Olympics bowling on Tuesday. Wednesday is
his job. Tomorrow he’ll have adaptive PE, and he’ll see his Rock Wall (a sheltered
workshop) worker.”
Nancy and Mason did not have to try hard to get Gary active, but they did try
to support his high energy by directing it. “He runs constantly—we’d love to have
him in cross country at school—or track—but there just wasn’t anybody that could
keep up with him. He’s busy all the time.” She went on to say that Gary liked to
help with chores around the home and especially physical chores. She said, “He’s
doing a lot of stuff like that now. This winter we may start teaching him to shovel
snow. He’d be great at it. We’ll probably let him start shoveling snow.”
While riding a bicycle was an activity available to all of the adult children,
they varied in their interest. Of those who learned to ride, some liked it and some
did not. Mary Anne and Charlie noted that Eli used to bicycle. Mary Anne said that

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 Physical Activity in Adults With ASD 9

he rode his bike to school, as well as to the barber shop. Charlie continued, “He
used to, but he stopped doing that : : : his coordination is not real good.”
Julia was concerned with Henry David’s weight, as well as his mental health.
She recalled that as a child:
He did learn to ride a bike, and as a matter of fact, we pretty much made him
and his brother go to school by bike. I think we crossed with him at Glenda
Avenue, and then they could ride on their own in the back streets.
She remembered that the boys rode their bikes to elementary school as well as to
junior high. “I don’t think Henry David ever rode the bus, he always took his bike.”
At 19, Sarah was among the youngest of the adult children. Her mother
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Jessica spoke of how Sarah loved riding a “real” bike: “She rides pretty fast, and so
we can ride for about 45 minutes to an hour.” She went on, “I take her to walk the
dog sometimes, it’s just very slow : : : ”
Eli loved to spend the day at the water park, but because he did not drive, his
father took him and picked him up later. Charlie spoke of driving Eli the 12 miles
to the water park every Saturday in summer, where he (Eli) would stay all day
playing actively in the water. Mary Anne added, “Although I do not know how
much real swimming he does. He seems to ‘bob’ a lot.” Eli’s father would take him
on a Saturday and he (Eli) would stay from 10 a.m. to 6 p.m. when the park closed.
His love of the water park did not surprise his parents. His mother said that she
took him to a “Mom and Tots” swim class when he was a toddler, and that he has
loved swimming and the water ever since. As he grew, he would go to the
neighborhood pool weekly or more often. Mary Anne recalled:
He loves the water activities but loves the socialization also. They (the water
park staff) love him and do special things for him because he is well-behaved,
well-mannered, and just likable. His : : : quirks do not bother them.
Nicole discussed her experiences with her son, Noah, by saying, “He’s pretty
stubborn about things. We try to get him to do things, but we’re not always
successful.” She noted that her younger son, whom she described as “neuroty-
pical,” and her husband were both very active and fit. When Noah was on the high
school swim team he lifted weights but stopped when he finished high school. Of
Noah, she remarked
We would love to get him involved in a softball league, get him lifting
weights again—he lifted for swimming. He wanted to learn to roller blade. So
he got roller blades and I got roller blades and we’d go up and down the street.
She gave a wry smile and said of herself, “Mom would go to the roller rink
with him.”
Jackie spoke positively about the adaptive martial arts program at a local
Young Men’s Christian Association (YMCA) and remarked that the instructor was
very good. “He’s only been in it about six months, but I think the instructor was
going to try to get them their yellow belts [in tai kwon do] this week. Mark doesn’t
know about that.” When asked if he would advance to another class, she answered,
“I think they would stay with the adaptive class, just because he [teacher] is so great,

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 10 Buchanan, Miedema, and Frey

and there are other volunteers, so they have one on one, almost. The guy who is
teaching it is just great.”
Eliza spoke of how Jake was able to get his middle school and high school
physical education credits through Christine’s program. Regular physical educa-
tion, she said,
was a disaster. Overstimulation for him, big gym, the crowd. So much noise.
There were so many unwritten rules. Can you imagine a locker room? And
there’s no adult in there watching over them. No. No, no, no, no, that didn’t
work for him.
Jessica told about their practice of hiring college students to take Sarah to the
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YMCA or other places. She remarked that Sarah “could go to the ‘Y’ every single
day. She needs the exercise.” Jessica noted “on her own she (Sarah) certainly
doesn’t choose to get exercise.” Her high school adapted PE class (as opposed to
Christine’s program) also goes to the YMCA:
They walk around the track. They might also do the treadmill there, the bike,
the exercise bike there. She likes the one that has the arms that go and
she keeps going a little bit more than she does just a regular stationary
bike.
The fitness apparatuses serve to pace her and to keep her engaged, and
sometimes, she will “do the treadmill there. The treadmill is good because it keeps
her moving.” Jessica added that Sarah “loves to swim because she has always
loved swimming. She cannot get enough of the pool!”
Henry David became involved with fitness when his therapist arranged a free
pass for him to attend Healthy & More. Recalling this, Julia said, “That was
something wonderful. His therapist knew that it would be really important for
him.” After becoming accustomed to going to Healthy & More, Henry David
bought a membership. On days it was closed he would attend the Elliot Green
Center, which was closer to his home.
Parents’ efforts to get their adult children involved in PA involved a variety of
strategies. Parents encouraged them to participate in school sports such as cross
country, recreational activities such as bike riding, individual activities such as Tai
Chi, and home leisure activities such as walking the dog. In addition, they sought
out and found agencies and organizations that provided further support for
individuals with ASD to be physically active. Much like the variance among
individuals with ASD, some efforts to get them engaged were more successful
than others.

Initiating Engagement Independently in PA

Julia smiled with delight as she recalled when Henry David “found out that Elliot
Green Recreation Center has new ellipticals, he went to Elliot Green Rec Center.
He was that motivated!”
Sometimes, the adult children with ASD independently indicated a desire to
engage in a particular PA. When possible, the parents followed through to enable
their child’s PA participation. For example, Nicole indicated how surprised she

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 Physical Activity in Adults With ASD 11

was when Noah decided that he wanted to swim. She recalled, “And then halfway
through 8th grade he came home and said he wanted to be on the swim team. And
I’m, like, ‘o-o-oh : : : k : : : !’ When he said that I hired a private person to work
with him some. He had wonderful, wonderful coaches all the way through.” Noah
went on to swim on the high school team.
The parents reported that many of the adult children with ASD preferred
walking to any other activity. Eliza said that her son Jake would much rather walk
than ride a bike. Similarly, Nicole said of Noah that he was on his feet 5 hr a day,
5 days a week at work. Yet he still walked “miles and miles every day.” Noah
would have to walk three blocks to catch the bus to work, but one day he missed
the bus so he jogged the whole 3 miles in to work!
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Eli, at 43 years old, was the only one with ASD who lived independently. His
mother Mary Anne enthusiastically said that Eli walked, “Everywhere, every-
where, miles and miles and miles and miles a week!” She continued, “He’s a half a
mile walk from us and so if he walks back and forth it’s a mile.” His apartment is a
quarter of a mile from his job, and Mary Anne and Charlie were even able to take
short vacations during which, according to Charlie,
Eli comes over twice a day. He will come over in the morning, get the paper
and take it inside, and he will come over in the afternoon to get the mail and
take it inside. I mean he can do it once a day, too, but no, he’s going to do it
twice. That’s the way he has always done it.
Often the adult child wanted to go for a walk or a bike ride, and was not
allowed to unless he was accompanied by a sibling, parent, or some other support
person. In those instances, the parents had to decide just how much independence
they were willing to give their child as they considered whether to allow him or her
to go alone. For instance, Jackie said that Mark likes to be physically active, and
that he rides his scooter—the kind that requires the rider to push with a foot—each
day. As for how long he rides, she replied, “It varies. It depends on if it’s too hot,
too cold. Sometimes 20 minutes, sometimes five minutes, sometimes an hour.”
She remarked that she did not have to worry about him because he rides on their
cul-de-sac, “and that helps. All my neighbors know to look for him. With the
scooter, he’ll stay on our cul-de-sac.”
Julia was pleased to see Henry David finding an activity he liked, and
becoming so committed to working out. She said he uses an iPod to keep his mind
from wandering while he works out on the elliptical.
Before the elliptical he tried the treadmill, but he didn’t like it. In bad weather
he would walk indoors; at Healthy & More they have that indoor walking path
around the gym. Recently he has started doing functional fitness activities.

Benefits of PA
Nicole worked at the university, and we sat in the student center as she spoke of
the benefits of swimming for her son: “Part of it’s probably the sensory part you
get in the water itself. And then the endorphins, the relaxation. Whatever it was it
made a huge difference.”

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 12 Buchanan, Miedema, and Frey

Some of the parents were concerned about the adult child maintaining weight.
Julia related her concern about Henry David’s weight, saying,
He is very overweight. I think the exercise is keeping him in check. Because
the way he’s eating : : : I think he’d be back up to 300 if he weren’t exercising,
so I think exercise has helped. And the fact that he recognizes that the exercise
is actually helping him emotionally. That’s really why he’s doing it! When he
feels antsy, he says “I gotta go for a walk, or I’ve got to go do the elliptical,
because I’m just going crazy.”
Eliza indicated that it was clear to her that Jake’s school work improved
considerably when he was active:
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The only real physical exercise he got was Christine’s class. That’s why I
could tell that her class had such an impact on his ability to cope. It was a
dramatic and noticeable change in him when he was going to her class versus
when he was not. I loved to see her classes start and hated to see them end for
his (Jake’s) benefit. It helped make school (and life) do-able for him. Jake did
not take Christine’s class his junior and senior years. His grades and his
attitude both fell significantly those years.
Nicole, too, related PA to improved ability to do school work as well as
improved mood. When Noah was in high school Nicole noted that when swim
season ended and he stopped swimming,
His ability to understand just plummeted. He couldn’t do the same problems he’s
done two weeks before. I said, “Buddy you’re getting back in the pool. You’re
gonna swim every day. I don’t care what we have to do.” It went right back up.
Part of it’s probably facilitating the corpus callosum crossover, using all four
limbs, and turning your head. I’m convinced it was because of the movement.
When Sarah rode her bicycle, one of the few moderate to vigorous activities in
which she engaged, she stopped perseverating. Her mother said that one of Sarah’s
symptoms was that she repeated things over and over. An obvious benefit of
bicycling was how it reduced her perseveration for a period of time following
the ride.
Nicole spoke of the social benefits of activity, in particular walking the dog.
She said that walking the dog was an unexpected social lesson. Having a dog led to
people stopping to speak to him and talk about their dogs, and he learned to ask,
“‘Is that a boy or a girl? How old is it? What’s the dog’s name?’ He knew more
about the dog than about the people!”
The parents perceived that PA helped maintain weight, improve school work,
improve mood, and increase social skills. They saw such improvement and were
determined to keep their adult children engaged in PA.

Barriers or Reasons for Disengagement in Particular Activities

Eliza, a mother with three sons, recalled Jake’s (the oldest) desire to give up
martial arts when she said,

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 Physical Activity in Adults With ASD 13

Both [brothers] agreed to take the [martial arts] class as long as the other one
would take it: “I will if he will.” Neither wished to continue taking the class
for very long. Jake’s motor skills just were not up to par to get movements
needed so he lost interest. Anything athletic was a struggle for him.
According to the parents, all of the adult children liked and regularly engaged
in some form of PA. But just as anyone else, they sometimes lost interest in the
activity after engaging for a time, and sometimes did not even want to attempt a
particular activity.
Despite Julia’s efforts, Henry David rejected Qi Gong and Eight Brocade
(types of Tai Chi), both of which she posited would make a positive impact on his
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depression and anxiety. “I think he concluded with each of these that it just doesn’t
work for him.”
Mark, Jackie’s son, lost interest in Special Olympics swimming after he won a
gold medal and went on to take first place in the state! Jackie said,
he won the gold medal, and now he’s like, “I’m done, I did that.” I’m like, you
don’t want to go win mommy some more bling? No. He did it (already). What
else can you do but first place? He only did it one year (then he stopped
swimming).
While most of the parents indicated that they wanted the children to learn to
ride a bicycle, their desire was met with varying results. When asked if Jake rode a
bike, Eliza replied succinctly, “Never learned how. We tried, it just wasn’t his
thing.” Jackie gave a similar response regarding Mark: “He never rode a bike. He
never wanted to.” Of Eli, Mary Anne and Charlie remarked that he could ride, but
that he no longer did. Charlie explained that Eli was lacking in coordination and
was more comfortable walking than riding a bicycle.
Individuals who had siblings, whether neurotypical or with ASD, often chose
to participate only if the sibling did. Eliza encouraged Jake to stay in his martial
arts class, but he would not unless his brother Carter, who is neurotypical, also
continued to take the class. Carter’s skills were too high for the class, and Jake’s
skills were not quite high enough, but both agreed to continue if the other brother
agreed, as well.
Henry David battled weight problems as well as anxiety problems, which
sometimes became barriers to his PA participation. For instance, when he passed
puberty and was gaining weight he had to stop riding a bicycle due to prostate
problems that were exacerbated by his weight on the bicycle seat. Henry David’s
weight may have also been an issue, indirectly, to swimming. Julia surmised that
he was “embarrassed by his weight, and also he doesn’t like to get splashed.”
Henry David did, however, take to riding the elliptical at the fitness center, as long
as he had his iPod. If he did not have music to distract him, he would dwell on the
things that made him anxious.
Change of interest or loss of interest was a frequent reason for disengagement.
Other reasons were health difficulties, or because the adult child wanted to emulate
the actions of a sibling. Recalling that Mark achieved the external goal of winning
a gold medal and saw no value in continuing that activity, for, as his mother said
drolly, “He did it (already). What else can you do but first place?”

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 14 Buchanan, Miedema, and Frey

Discussion
We applied social-ecology theory to the results of this study. Given the nature of
the findings, the focus of the discussion consists of intrapersonal, interpersonal,
and community factors as they relate to the findings of the research.

Intrapersonal Factors
Intrapersonal factors, those within the individual such as self-image, motivation,
and attitude, played a marked role in the individuals’ engagement in PA. Taking
advantage of resources available for engagement is an intrapersonal factor
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(McElroy, 2002). Henry David had advanced to the point that he not only knew
the importance of PA, he acted upon what his mother inferred was a need to work
out. She had said that Henry David was one who needed some control over his
engagement in the activity, and he came to understand how being active helped
his mental health. This finding coincides with the study by Hillier, Murphy, and
Ferrara (2011), in which the participants reported lower anxiety after working
out, which was corroborated by the cortisol levels. Noah’s mother said that he
loved to walk, and he often requested to go on walks. Walking was his activity of
choice once he stopped swimming. His drive to walk is an intrapersonal factor
that facilitated his participation in a large amount of PA. King et al. (2003)
developed a model describing factors influencing PA in children with disabil-
ities. Two elements of intrapersonal factors described are their perceptions of
their own competence and their preference for type of activity. While the
research was done with children, their findings can be applied to the adults
with ASD in our study. A case can be made for preference with Sarah, who was
described by her mother as loving to bicycle and to swim. She described Sarah as
“compliant,” saying that she would try almost any activity. Nonetheless, Jessica
emphasized how strong a preference her daughter had for cycling and for
swimming when she said, “She cannot get enough of the pool!” and how she
loved to ride a “real” bike. Sarah clearly was confident in her abilities when she
was cycling and swimming. On the other hand, several of the other parents
described how their children were not confident in riding a bike. Charlie said that
Eli’s coordination was not very good, and as a result, he (Eli) did not like to ride a
bike, nor did he want to learn to drive, indicating lack of confidence in his
coordination and thus his ability to do those activities. Swimming, however, was
different, as his parents indicated that Eli was quite confident in the pool.
Intrapersonal factors related to motor ability were observed in the Eaves and Ho
(2008) study in which 63% of parents reported that “lack of athletic ability” was a
barrier to PA participation in their adult children with ASD, although what was
meant by lack of athletic ability and how it was an impediment to activity was not
clarified. It is well documented that children with ASD exhibit deficits in global
motor abilities (Liu & Breslin, 2013), and there are higher rates of dyspraxia in
adults with ASD compared with those without ASD (Cassidy et al., 2016). There
is some evidence that motor skills impact PA (Lloyd, Saunders, Bremer, &
Tremblay, 2014), but the cause and effect of this association have not been well
supported (Holfelder & Schott, 2014). The influence of motor ability on PA in
this those with ASD requires further investigation.

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 Physical Activity in Adults With ASD 15

Interpersonal Factors
Interpersonal factors can be thought of as social influences, as friends and family
impact the individual with ASD in terms of engagement in PA. Jake agreed to
continue with his martial arts instruction, but only if his brother stayed in it with
him. Jake’s motor skills were not good enough to sustain his interest, but the social
connection to his brother was a powerful interpersonal factor influencing him to
remain engaged. Similarly, Mark’s mother told of how he would stay in the
adapted tai kwon do class because of the instructor. The interpersonal factor of the
good relationship with the teacher was more powerful than moving up a class once
he achieved his yellow belt.
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In addition to the swimming, Eli enjoyed the socializing that he engaged in at

the water park. While there, he stayed active and loved to talk to people. As with
Noah, it was an interpersonal factor that was the catalyst to Eli’s engagement in
PA, in this case, his outgoing personality. Interpersonal factors played a role in
Noah’s activity, for the social aspects of meeting people while walking the dog
contributed to his continued engagement. These findings correspond closely to
those of Taliaferro and Hammond (2016), who reported that the PA participation
of individuals with intellectual disability in their study was facilitated by social
interactions with friends. Clearly, many of the individuals chose to include a social
component in their participation, although others, such as Sarah, were unable to
participate alone. These findings are supported by research by Eaves and Ho
(2008), who noted that a major reason for not participating was the lack of leaders,
or lack of a partner, suggesting that interpersonal skills seem to carry weight for
individuals with ASD.
Orsmond, Shattuck, Cooper, Sterzing, and Anderson (2013) discuss the social
isolation of young adults with ASD, and note that such isolation continues as they
transition from school to work or postsecondary education. Nonetheless, indivi-
duals, including those with ASD, form their social identities through their
relationships with family, friends, coworkers, and others with whom they interact
(McLeroy et al., 1988). Thus, even though many individuals with ASD have
difficulty with social cues and interactions (Conroy, Boyd, Asmus, & Madera,
2007; Orsmond et al., 2013), they identify and understand themselves through
their social involvement. Engagement in PA can contribute positively to such
improved social experiences.

Community Factors
King et al. (2003) state that an individual’s surroundings and behavior interact in a
reciprocal fashion. A case in point for the reciprocal relationship among the
community factors and the individual is Christine’s adapted PE program, which
exists as a university course. The individuals with ASD received individualized
instruction, while the university students learned about teaching motor and fitness
skills to them. While the course provided a service, the need would not exist
without the participation of the individuals with ASD.
Other supports available to the individuals with ASD were the fitness centers
(such as the YMCA and the Elliot Green Center) and sheltered workshops (such as
Rock Wall). Such agencies are considered community factors, which played a large

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 16 Buchanan, Miedema, and Frey

role in the provision of support. Such a role backs the notion that the individual is
connected to his or her surroundings and can function better or worse depending
upon the interaction with the environment. Another example of a community
interaction is local parks that offered bicycle and walking/hiking trails. Without
such support, Sarah, for example, would not have been able to ride her bike so
extensively at the park. Her mother reported that Sarah engaged in PA when at the
YMCA because of the apparatus and other environmental structures such as the
pool and the walking track. The barriers reported by the participants in Taliaferro
and Hammond’s (2016) study did not seem to hinder PA participation by the
individuals in our study. This is largely because parents were skilled at finding
supports, and many of those supports included transportation to the PA participation
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sites. Fleury and Lee (2006) emphasized the importance of neighborhood design,
including sidewalks and streetlights, as being important to African American
women’s participation in PA. Likewise, such design was important to the parti-
cipants in this study, as without safe sidewalks, Eli and Noah could not have walked
to their respective workplaces. Similarly, Mark’s mother would not have let him
ride his scooter had their street not been a cul-de-sac.

Conclusions
While none of the parents in this study had studied in areas related to kinesiology,
they all valued PA and were proactive in getting their adult children with ASD
involved in movement experiences. Most of them had enrolled their children in
Christine’s adapted physical education class, and perhaps that influenced their
positive regard for PA. In some cases, they experienced events demonstrating the
benefits of PA, for example, Nicole’s strong assertion about Noah’s improved
schoolwork: “I’m convinced it was because of the movement.”
The parents’ support for the individual’s engagement in PA facilitated their
children’s potential to be independent citizens. Eli lived independently and walked
to work. Mark walked to the transit stop to go to his job by bus, notably a
tremendous show of independence. PA contributed to Noah’s ability to work, as
his job kept him on his feet for many hours. Had the parents not had the foresight
to keep their adult children active, such opportunities may not have been available
to them.
Their interview comments provided evidence that community factors played a
role by providing support and being available to use for the individuals with ASD.
Community infrastructure made the streets and sidewalks safe, available, and
accessible. Local health/fitness centers were available because the parents had
family memberships, or, in Henry David’s case, his own individual membership.
The parents indicated that their adult children liked PA, which contradicts findings
by Stanish et al. (2015) where adolescents with ASD reported that they did not like
physical education or sports and would rather do something else than participate in
sports or exercise. Parent perceptions may not accurately represent their adult
child’s liking of PA (Finlay & Lyons, 2001), and additional research soliciting
information from those with ASD is recommended to better understand this topic.
For many of the individuals with ASD, their engagement in PA was intrapersonal
(having the disposition to do so) and interpersonal (much of the PA was also

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 Physical Activity in Adults With ASD 17

social), the latter of which played a reciprocal role for all participants. Because
individuals with ASD by definition often have social problems (Conroy et al.,
2007), facilitating their social experiences contributes greatly to their potential to
be actively engaged members of society.
PA as reported by the parents had multiple other benefits, such as improved
schoolwork and healthy weight loss. Staying healthy has tremendous benefits to
the individual, as he or she feels better and has more independence. The benefits to
society are that healthy citizens are better able to engage independently in the
community. Parents’ further assertions that their adult children’s engagement in
PA improved mood, reduced anxiety, reduced stereotyped behaviors, and im-
proved social skills leads us to conclude that PA in individuals with ASD can
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improve aspects of their social health and functioning. They may then transition to
citizens who experience enriched inclusion in their community.

Limitations and Recommendations for

Future Research
Limitations in this study include only having one face-to-face interview. Although
we followed up by email, a second face-to-face interview may have yielded more
data. Another limitation is that we did not measure nor did we specifically define
PA to the parents but rather accepted their own perceptions, which we found to be
appropriate. All of them spoke of activities (e.g., riding a bicycle, shoveling snow)
we could appropriately refer to as PA.
We recommend researchers extend this study in several ways. First, inter-
viewing adults with ASD either in addition to or independent from parents would
provide additional insight into PA in this population segment. Second, adding the
World Health Organization International Classification of Functioning, Disability
and Health to the theoretical framework could provide a holistic way of viewing
how environmental factors interact with characteristics of ASD. Finally, we
suggest using accelerometers to gauge PA in adults with ASD. We asked parents
to discuss their subjective perceptions of PA participation. Following up by
objectively measuring participation may reveal different findings.

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