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Occupational Patterns of Parents of Children with Autism Spectrum

Disorder: Revisiting Matuska and Christiansen's Model of Lifestyle Balance
Leah I. Steina; Amanda C. Forana; Sharon Cermakb
a
Division of Occupational Science and Occupational Therapy at the Herman Ostrow School of
Dentistry, University of Southern California, USA b Occupational Science and Occupational Therapy at
the Herman Ostrow School of Dentistry, University of Southern California, USA

Online publication date: 19 May 2011

To cite this Article Stein, Leah I. , Foran, Amanda C. and Cermak, Sharon(2011) 'Occupational Patterns of Parents of
Children with Autism Spectrum Disorder: Revisiting Matuska and Christiansen's Model of Lifestyle Balance', Journal of
Occupational Science, 18: 2, 115 — 130
To link to this Article: DOI: 10.1080/14427591.2011.575762
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Leah I. Stein,
Amanda C. Foran &
Sharon Cermak
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j Leah I. Stein, MA, OTR/L,
Doctoral Student, Division of
Occupational Science and
Occupational Therapy at the
Herman Ostrow School of
Dentistry, University of
Southern California, USA
j Amanda C. Foran, MS,
OTR/L, Doctoral Student,
Division of Occupational
Science and Occupational
Therapy at the Herman
Ostrow School of Dentistry,
University of Southern
California, USA
j Sharon Cermak, EdD,
Professor of Occupational
Science and Occupational
Therapy at the Herman
Ostrow School of Dentistry,
University of Southern
California, USA
j Correspondence to:
lstein@usc.edu
– 2011 The Journal of
Occupational Science
Incorporated
Journal of Occupational Science
2011, 18(2), pp 115
130.
ISSN 1442-7591 print/
ISSN 2158-1576 online
DOI: 10.1080/
14427591.2011.575762
Occupational Patterns of Parents of
Children with Autism Spectrum Disorder:
Revisiting Matuska and Christiansen’s
Model of Lifestyle Balance
We synthesized selected literature from psychology, neuroscience, occupa-
tional therapy, nursing, and other fields regarding parents of children with ASD
and utilized Matuska and Christiansen’s Model of Lifestyle Balance to organize
the literature to present a theoretically grounded and occupation-based
picture of the life experiences of parents of children with ASD. In doing so, we
discerned a complex relationship among the five dimensions suggested by
Matuska and Christiansen, prompting a refinement of their model to address
this complexity. Overall, a variety of factors associated with caring for children
with ASD have the potential to cause or contribute to negative psychological
consequences such as stress, anxiety, and depression, as well as functional
limitations and other health problems such as hypertension or diabetes. In
order to promote health and general well-being, lifestyle changes to enhance
balance may be necessary for many parents of children with ASD.
Keywords: Activity patterns, Autism, Lifestyle balance, Parenthood, Time use,
Family roles
In the past, it was believed that in strive to make these occupations a
order to balance one’s life, one must priority (Hakansson, Dahlin-Ivanoff,
be able to coordinate work, play, rest, & Sonn, 2006; Jonsson & Persson,
and sleep (Meyer, 1920). Currently 2006; Matuska & Christiansen,
the theme of ‘work, rest and play’ 2006, 2009; Westhorp, 2003). One
such model has been proposed by
continues to dominate the popular
literature as an important aspect in Matuska and Christiansen (2008),
balancing one’s life (Matuska & emphasizing the importance of com-
Erickson, 2008). However, in the patibility between desired and actual
occupational science community a patterns of occupation in order to
achieve lifestyle balance.
shift is beginning to occur, trans-
forming the perception of what true
balance entails. Scholars have begun Parents of Children with
to re-conceptualize the process by Autism Spectrum Disorder
which one achieves a balanced life,
suggesting that rather than attempt- Achieving and maintaining lifestyle
ing to achieve balance among work, balance may be difficult for many
rest, and play activities, individuals individuals; however, particular
should reflect on what is most per- groups may be at increased risk for
sonally meaningful to them, and such challenges. One such group is
J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1 115
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
parents of children with disabilities, especially
parents of children with autism spectrum dis-
order (ASD). Due to the high prevalence of ASD
(approximately 1 in 110; Centers for Disease
Control and Prevention, 2010), a growing num-
ber of parents are impacted by this disorder;
therefore, it is especially critical to examine the
experiences of this population.
Parenting a child with ASD is a unique and
challenging experience. In a recent study, Altiere
and von Kluge (2009) found that every parent
viewed the discovery that his or her child had
ASD as a ‘life-altering event.’ All families reported
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experiences of despair, sadness, denial, confusion,
and anger after diagnosis of their loved one. The
hardships for each family only increased once
they fully realized the implications of raising a
child with ASD. Many of the parents felt that a
‘normal life’ was difficult to achieve.
Living with a child with ASD may be a severe
stressor on the family for many reasons, including
the ambiguity of diagnosis, the severity and
chronic nature of the disorder, finding appropriate
treatment and educational programs, coping with
the financial burden of paying for services, and the
child’s lack of adherence to social norms (Altiere &
von Kluge, 2009; Ekas, Whitman, & Shivers, 2009;
Nærde, Tambs, & Mathiesen, 2002). Although the
signs and symptoms of ASD present well before a
child is 3 years old, diagnosis is often a lengthy and
frustrating process (Altiere & von Kluge, 2009). In
addition, the etiology of ASD remains unknown,
which may lead parents to question whether they
are responsible for their child’s disorder, producing
feelings of confusion and guilt.
Because of the severe and pervasive nature of the
disorder, parents of children with ASD experience
substantial emotional demands associated with
caring for their children (Bishop, Richler, Cain, &
Lord, 2007) and participation in desired occupa-
tions may be adversely affected. While parents of
typically developing children face many of same
challenges, parents of children with ASD may
experience them at a much greater intensity and
for a longer duration, as many children with ASD
116 J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
require lifelong care and supervision (Lounds,
Seltzer, Greenberg, & Shattuck, 2007).
Caring for a child with ASD does not always lead
to negative health consequences. Benefits such as
increased resilience and family unity, in addition
to feelings of empowerment when advocating for
their child, have been reported by families of
children with ASD (Bayat, 2007; Phelps, McCam-
mon, Wuensch, & Golden, 2009; Woodgate,
Ateah, & Secco, 2008). However, the literature
focuses overwhelmingly on the challenges, as op-
posed to the perceived benefits, of rearing a child
with ASD (Phelps et al., 2009). Using Matuska
and Christiansen’s (2008) model of lifestyle
balance as a framework to organize this literature,
we focus on how parents of children with ASD
may be at greater risk for poorer health and
decreased well-being due to lifestyle imbalance.
Matuska and Christiansen’s Model of
Lifestyle Balance
Matuska and Christiansen (2008) reviewed the-
ories of lifestyle balance from an array of dis-
ciplines, combining the empirical notions of
needs-based decision making with a dynamic,
occupation-based consideration of an individual’s
occupational patterns and perceptions throughout
the lifespan. This model of lifestyle balance is
especially useful in understanding an individual’s
occupational patterns, the extent to which these
patterns are congruent with desired occupations
over time, and how lifestyle balance can promote
health and well-being. According to the authors, to
achieve these positive outcomes an individual
must maintain relative balance in five lifestyle
dimensions, including (a) rewarding and self-
affirming relationships with others, (b) feeling
interested, engaged, challenged, and competent,
(c) creating meaning and a positive personal iden-
tity, (d) organizing time and energy to meet impor-
tant personal goals and personal renewal, and (e)
biological health and physical safety. See Table 1.
According to Matuska and Christiansen (2009),
life imbalances [are] characterized
by patterns of daily activities that are
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK

Table 1: The Five Dimensions of the Model of Lifestyle Balance

Matuska & Christiansen’s Application to Parents of Children with

(2008) Five Dimensions Characteristics and Considerations ASD

Rewarding and self-affirming
relationships with others
Feeling interested, engaged,
challenged, and competent
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Positive relationships with family and
others; socially supportive environments;
balance between care for self and care for
others.
Opportunities to feel competent and
engaged through occupations that are
interesting and challenging; successfully appropriate services and care, fostering
performing actions to meet needs and
fulfill roles.
Caring for a child with ASD can alter a
parent’s social supports and relationships
with friends, family, and others.
Parents of children with ASD may have
particular challenges with providing
development and feeling engaged with
their child, and managing behaviors.
These challenges can lead to feelings of
incompetence in the parenting role.

Creating meaning and a positive All the subjective and emotional For some parents, caring for a child with
personal identity appraisals of the events in our life; the ASD results in increased life satisfaction,
significance attributed to them in relation but many others experience a ‘loss of self’
to our goals; the underlying values, and feelings of being trapped in the role
beliefs, and personal identity that are of caregiver as they struggle to maintain
created and supported by them. their individual identity.
Organizing time and energy to Sufficiently managing the multiple The lives of parents of children with ASD
meet important personal goals demands on one’s time in order to are often dominated by the needs of the
and personal renewal accomplish goals and create opportunities child, leaving parents with little time to
for energy renewal. engage in other personally meaningful
occupations.
Biological health and physical Basic physiological needs such as Parents of children with ASD are at
safety nutrition, exercise, safety practices, sleep, increased risk for stress, anxiety,
and avoiding addictive substances. depressive feelings, poor sleep quality
and quantity, decreased daily mood, and
decreased perceived well-being.

Note. Adapted from Matuska, K. M., & Christiansen, C. H. (2008). A proposed model of lifestyle balance. Journal of Occupational
Science, 15, 9
19.

perceived to be unsatisfactory to the or failure in its five dimensions should predict

individual and that (1) increase the risk
for physical and mental health problems;
(2) limit or compromise participation in
valued relationships; (3) are incongruent
with establishing or maintaining a satis-
factory identity; (4) are felt to
be mundane, uninteresting, or unchallen-
ging; or (5) are not sufficiently organized,
managed, or comprehensible to enable life
meaning, self-renewal, or goal achieve-
ment. (p. 151)
If Matuska and Christiansen’s (2008) model is
truly a reflection of how people work to create
balance in the context of their daily lives, success
either lifestyle balance or imbalance in different
populations. Utilizing this model to analyze a
population at risk for challenges in lifestyle
balance, such as parents of children with ASD,
may prove particularly salient. In this paper, we
use the five dimensions of lifestyle balance
proposed by Matuska and Christiansen (2008)
to organize current literature to present a more
theoretically grounded and occupation-based
picture of the life experiences of parents of
children with ASD. We articulate the reasons
why parents of children with ASD may be at
increased risk for lifestyle imbalance and subse-
quent problems with physiological and psycho-
logical health. In addition, we use this literature

J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1 117
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
to test the validity of Matuska and Christiansen’s
(2008) model of lifestyle balance. We propose a
refinement of the current model based on our
application to parents of children with ASD.
Methods
In this paper, we synthesize selected literature
from psychology, neuroscience, occupational
therapy, nursing, and other fields regarding
parents of children with ASD. Online literature
searches were conducted between September and
November 2009 using PubMed, PsycInfo, ERIC,
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and GoogleScholar using the following key
words: autism, autism spectrum disorder(s),
ASD, developmental disability(ies), intellectual
disability(ies). Each of these terms were also
used in combination with the following key
words: affect, anxiety, attachment, balance, beha-
vior(s), buffer(ing), caregiver(s), caregiving, com-
petence, depression, diagnosis, engage(ment),
experience(s), identity, leisure, lifestyle, meaning,
mental health, mood, mother, mothering, occu-
pational performance, occupation(s), parents,
parenting, psychological health, physiological
health, relationship, safety, sleep, social support,
stigma, stress, time, and well-being. Criteria for
acceptance included articles: a) published in a
peer-reviewed journal, b) published or translated
into English, c) published in or after the year
1995. The resulting literature was further nar-
rowed to focus on articles with topics pertaining
to the five dimensions of Matuska and Christian-
sen’s (2008) model of lifestyle balance, yielding
91 articles. These articles included a variety of
research methods such as: focus groups, long-
itudinal studies, literature review, parent survey,
retrospective analyses, etc. to obtain their data.
The following sections of our paper are organized
using the five dimensions (I
V) proposed by
Matuska and Christiansen (2008).
I. Maintaining rewarding and self-affirming
relationships with others
Social support, positive relationships with others
and the perception of connection are important
aspects in one’s life, and have the ability to
improve psychological and physical well-being,
118 J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
and alleviate distress (Matuska & Christiansen,
2008). Caring for a child with ASD can alter a
parent’s social supports and relationships with
friends, family, and others. These changes can be
caused by, but are not limited to, others’ mis-
interpretations of behaviors and cognitive limita-
tions exhibited by the child with ASD (Altiere &
von Kluge, 2009; Boyd, 2002; Estes et al., 2009;
Woodgate et al., 2008) and parents’ lack of time
to engage in social activities with friends and
family (Altiere & von Kluge, 2009; Boyd, 2002).
Despite the importance of forging and maintain-
ing social relationships and the reinforcement
these relationships provide, research indicates
that parents of children with ASD often experi-
ence a lack of support from friends and family.
Only 17.6% of mothers of children with autism
reported sufficient support, as compared to 53.3%
and 61.5% of mothers of children with cerebral
palsy (CP) and intellectual disabilities, respec-
tively (Sen & Yurtsever, 2007). Marital and other
familial relationships may be impacted as well, as
increased stress and strain can lead to conflicts
and feelings of resentment (Altiere & von Kluge,
2009; Gray, 2003; Phelps et al., 2009).
Many parents report feeling ‘left out’ in social
gatherings (Altiere & von Kluge, 2009; Luong,
Yoder, & Canham, 2009) and state that they do
not have the same possibilities for participation in
recreational activities as other families (Olsson &
Hwang, 2003). In one study, parents reported
feeling hesitant to attend public outings due to
embarrassment from their child’s behavior, and
not receiving invitations to attend (or return to)
social gatherings (Gray, 2002a). Parents of chil-
dren with ASD, but mothers especially, often
withdraw from social activities, isolating them-
selves from not only public scrutiny, but also
family and friends (Benderix, Nordstrom, &
Sivberg, 2007; Boyd, 2002; Dunn, Burbine,
Bowers, & Tantleff-Dunn, 2001; Olsson &
Hwang, 2003; Woodgate et al., 2008). In one
study, more than 70% of mothers of children with
autism reported changes in their social lives due
to their role as a caregiver (Sen & Yurtsever,
2007).
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
Research indicates that parents of children with
ASD do desire acceptance and support from
others and the community (Lin, Tsai, & Chang,
2008), and those that receive support exhibit less
stress, fewer depressive symptoms, and greater
emotional well-being (Altiere & von Kluge, 2009;
Benson & Karlof, 2009; Boyd, 2002; Dunn et al.,
2001; Phelps et al., 2009; Pottie, Cohen, &
Ingram, 2009). However, challenges in obtaining
the appropriate quantity and quality of rewarding
social relationships can lead to additional diffi-
culties in a parent’s life.
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II. Feeling interested, engaged, challenged and
competent
In order to achieve balance, individuals must
have an opportunity to feel competent and
engaged through successful completion of occu-
pations and roles that are interesting and challen-
ging (Matuska & Christiansen, 2008). The role of
parenting, and its related occupations, is one
example. Although often a prescribed role for
the adult female of the family, mothering can be
considered a gender free practice (Lawlor, 2004).
In the role of ‘mother’ (applicable here to mother,
father or both parents), certain responsibilities
must be assumed and completed in order for one
to feel and be perceived by others as successful. In
many cultures, these responsibilities include: a)
providing care in order to keep others safe and
nurtured, b) fostering development, c) managing
behaviors, instilling values, and instructing chil-
dren to become independent and contributing
members of society (Benderix et al., 2007;
Dunlea, 1996; Hanigsberg & Ruddick, 1999;
Larson, 2000; Lawlor, 2004). Consequently, par-
ents of children with ASD may have difficulty
achieving desired occupational patterns in this
dimension, specifically in the area of perceived
competence.
Provision of care
Attempts to protect a loved one and keep him or
her from harm can be jeopardized when caring
for a child with a diagnosis of ASD, especially as
these children are at increased risk for self-injury
and often exhibit impulsivity and unsafe behavior
(Mayes & Calhoun, 1999). Feelings of guilt may
J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
result from a parent’s perception that he or she is
not capable of safeguarding the child with ASD.
In addition, some parents self-blame, believing
that they somehow caused their child’s disorder
or are responsible for their child’s atypical devel-
opment (Altiere & von Kluge, 2009; Benderix
et al., 2007; Gray, 2003).
Parents also commonly suspect that something is
wrong with their child and report it to one or
more professionals (Brogan & Knussen, 2003).
However, professionals often tell parents that
there is no cause for concern, no immediate
action is required, or that the child is just going
through a stage (Altere & von Kluge, 2009;
Hutton & Caron, 2005). When parents’ suspi-
cions are not confirmed by health professionals,
they may feel confused and disempowered. Bro-
gan and Knussen reported an average of 3 years
lapsed between first parental suspicions and
actual diagnosis of ASD. Following a child’s
diagnosis of ASD, parents may encounter diffi-
culty in choosing and accessing appropriate
services (Bitterman, Daley, Misra, Carlson, &
Markowitz, 2008; Gray, 2003; Jones & Passey,
2004). In a qualitative study of parents of
children with autism, one participant described
feeling ‘‘that they had wasted too much time in
determining their child’s diagnosis . . . [and] regret
not initiating treatment sooner’’ (Altiere & von
Kluge, 2009, p. 47). After facing challenges such
as these, parents of children with ASD may feel
that they have failed to provide adequate care for
their child and have not sufficiently fulfilled one
important aspect of the parenting role.
Fostering development and feeling engaged
Creating attachment and connection with their
child is also an important responsibility of
parents. These bonds will ultimately foster devel-
opment in the child, as early infant-mother play
interactions provide the foundation for skill
development, the learning of rules, and the
building of trust (Fraits-Hunt & Zemke, 1996;
O’Brien, 1996). Typical attachment behaviors
displayed by babies include eye contact, verbal
contact, and physical contact, which allow the
child to engage the adult and initiate basic
119
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
communication (Akdemir, Pehlivanturk, Unal, &
Ozusta, 2009; Dunlea, 1996). These interactions
are extremely important in the development and
maintenance of a successful relationship (Fraits-
Hunt & Zemke, 1996).
Children with ASD have impaired social related-
ness and often fail to seek, or even reject, physical
contact from parents (Estes et al., 2009; Lin et al.,
2008). Feelings of limited relatedness can lead to
relationships that are perceived as more distant
and less reciprocal by parents (Abbeduto, Seltzer,
Shattuck, Kraus, Orsmond, & Murphy, 2004;
Akdemir et al., 2009). The lack of reciprocal
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attachment behavior by children with ASD can
create feelings of disappointment and upset. In
studies of this population, parents often agree
with statements such as ‘‘Most times I feel that my
child does not like me and does not want to be
close to me’’ (Davis & Carter, 2008, p. 1282; Estes
et al., 2009). Similarly, on a measure of parental
stress, the parent-child relationship was reported
as the most stressful area of parenting for both
mothers and fathers of children with ASD (Davis
& Carter, 2008).
Managing behaviors
Many societies dictate that a child’s behavior is
the responsibility of his or her parent, as it is the
parent’s job to discipline the child and teach him
or her to become a valued member of society
(Gray, 2003; Krieger, 1996). Children with ASD
commonly exhibit challenging behaviors in both
private and public settings, including repetitive
behaviors and disruptive ‘meltdowns’ (Blacher &
McIntyre, 2006; Estes et al., 2009; Rogers,
Gordon, Schanzenbacher, & Case-Smith, 2001;
Smith, Matthew, Oliver, & Innocenti, 2001). One
father noted that ‘‘it’s very embarrassing if you are
having a barbecue or something, and, you know,
he swears at people or he swears at people who
are walking past down the street who don’t even
know him’’ (Gray, 1997, p. 1104). These displays
of ‘‘unacceptable’’ behaviors reflect on the parent-
ing abilities of caregivers of children with ASD:
‘‘when a child sort of acts up . . . you don’t want
him to do it because it’s a bit embarrassing.
And you feel like it reflects on you’’ (Gray, 2002a,
120 J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
p. 739). The parent, then, must manage negative
public perceptions as well as the feelings of guilt
and stigma that often result (Bishop et al., 2007;
Estes et al., 2009; Gray, 2002b; Lawlor, 2004).
One parent of a child with ASD described a
camping trip during which, ‘‘he called me an idiot
in front of all those people, and swearing started
to come out, and everybody just [froze]’’ (Gray,
2002a, p. 740).
Overall self-perception of competence
Parents of children with ASD may experience
feelings of insecurity and incompetence in their
ability to raise their child. Over 50% of mothers of
children with ASD report feeling overwhelmed
(Sen & Yurtsever, 2007). In addition, parents of
children with ASD often perceive themselves as
having an external locus of control (Dunn et al.,
2001). People with this belief think that outcomes
are determined by forces outside of their control
and that they possess a diminished ability to
influence and cause changes in their environment
(Lloyd & Hastings, 2009). When events related to
caregiving are viewed as controlled by external
factors, parents of children with ASD render
themselves powerless and may perceive them-
selves to be failures in the parenting or caregiving
role (Hassall, Rose, & McDonald, 2005; Lloyd &
Hastings, 2009; Luong et al., 2009).
III. Creating meaning and a positive personal identity
According to Matuska and Christiansen (2008), a
balanced lifestyle includes engaging in occupa-
tions that give life meaning and foster the devel-
opment of a positive personal identity, such as
those of a parent and a worker. However, the lives
of parents of children with ASD are often domi-
nated by the needs of the child, leaving parents
with little time for themselves (DeGrace, 2004;
Jones & Passey, 2004; Montes & Halterman, 2007;
Olsson & Hwang, 2003). The subsequent disrup-
tion of roles, relationships, and activities can
impact parents’ ability to engage successfully in
chosen and meaningful occupations (Altiere &
von Kluge, 2009; Gray, 2002; Olsson & Hwang,
2003; Sen & Yurtsever, 2007). Tunali and Power
(2002) found that mothers of children with autism
must often redefine what is important to them in
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
order to accommodate for the increased needs of
that child. For some parents, this results in
increased life satisfaction, but others may experi-
ence a ‘loss of self’ and feelings of being trapped in
the role of caregiver as they struggle to maintain
their individual identity (Davis & Carter, 2008;
Tunali & Power; Woodgate et al., 2008). Many
times, parents attempt to divide their focus
between activities, relationships and caring for
the child with ASD to create a sense of balance and
well-being for themselves (Woodgate et al., 2008).
IV. Organizing time and energy to meet important
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personal goals and personal renewal
Unless one can sufficiently manage the multiple
demands on one’s time and energy, accomplishing
goals and attaining personal renewal may not be
possible (Matuska & Christiansen, 2008). The
ability to successfully organize time and energy
can be influenced by a variety of factors. For
parents of children with ASD, occupational bal-
ance may be especially impacted by having less
available free time. For example, one parent noted
that it can even be ‘‘hard to get a minute alone
to
just take a break from everything’’ (Hutton &
Caron, 2005, p. 186). Parents of children with
ASD report that they have less time to spend with
friends, family, other children or even their spouse
(Gray, 2003; Sen & Yurtsever, 2007), as ‘‘raising a
child with autism is a 24-hour, 7-day-a-week task’’
(Altiere & von Kluge, 2009, p. 146). Children
with ASD frequently require constant monitoring
and attention, with up to 83% of parents reporting
this as a challenge (Olsson & Hwang, 2003; Sen &
Yurtsever). Increased time and effort may also be
required because many children with ASD present
with intellectual impairments and limited ability
to perform daily living skills (Estes et al., 2009).
Additionally, some parents need to occupy and
pacify children with ASD to prevent a behavioral
crisis (DeGrace, 2004).
Work activities may also be altered, as mothers
commonly feel required to give up job opportu-
nities in order to care for the child with ASD
(Altiere & von Kluge, 2009; Lin et al., 2008;
Luong et al., 2009; Olsson & Hwang, 2003;
Tunali & Power, 2002; Wachtel & Carter,
J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
2008). In fact, between 41% and 56% of mothers
of children with autism give up work to care for
their child’s medical, educational and therapy
needs (Luong et al.; Olsson & Hwang, 2003).
And, if mothers do not leave their job entirely,
performance is often negatively affected due to
difficulty balancing both work and family (Gray,
2003).
Many parents spend a great deal of time research-
ing ASD, utilizing this information to coordinate,
advocate for, and plan the best path to treatment
for their child. Time spent in therapy may also be
extensive, with children with ASD receiving, on
average, 5.4 different types of services such as
speech or language therapy and occupational
therapy (Bitterman et al., 2008). One parent,
while describing these services, noted that it is
‘‘exhausting to keep up’’ with it all (Luong et al.,
2009, p. 227). Applied behavior analysis (ABA),
an extremely time-intensive therapy commonly
utilized with children with ASD, requires much
parent commitment, and is often specifically
mentioned by parents as consuming their lives
(Schwitchtenberg & Poehlmann, 2007). One
parent with a child in ABA therapy stated ‘‘we
have no life; we only have a [ABA] program!’’
(Woodgate et al., 2008, p. 1078).
In a qualitative study of parents of children with
ASD completed by Luong et al. (2009), all
participants noted having limited time for extra
activities. This lack of time may lead to difficulty
in achieving personal renewal. In addition, finan-
cial hardship can arise because children with ASD
often require specialized evaluations and services
that may not be covered by medical insurance
(Freudenheim, 2004; Thomas, Ellis, McLauren,
Daniels, & Morrissey, 2007) or the school district
(Altiere & von Kluge, 2009; Bitterman et al.,
2008). These expenses, paired with the fact that
many parents are forced to leave their jobs
outside the home, have been estimated to result
in a 14% loss of income, as compared to a 2% loss
in families with children with other disabilities
(Altiere & von Kluge; Montes & Halterman,
2008). Therefore, parents can be left with
less discretionary money to utilize for personal
121
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
renewal and stress-reducing activities. Ironically,
when the money and/or time is found, parents
often have less energy to participate in preferred
activities because their energy has already been
expended caring for their child with ASD
(Sanders & Morgan, 1997).
V. Biological health and physical safety
According to Matuska and Christiansen (2008),
there is a relationship between physiological and
psychological measures of stress and the health of
all individuals. Managing and coping with stress
is integral to health, and specific life choices may
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mediate the effects of stress. For example, ba-
lanced occupational patterns can lead to feelings
of competence, comfort, pleasure, satisfaction,
and well-being, even in the presence of stressors.
However, imbalance in these dimensions may
increase risk and prevalence the negative con-
sequences of stress.
Although some stress is typical and to be
expected when raising a child, parents of children
with disabilities are at risk for experiencing
heightened stress (Baker, McIntyre, Blacher,
Crnic, Edelbrock, & Low, 2003; Montes &
Halterman, 2007) compared to parents raising
typically developing children. Stress levels are
noted to be even greater in the population of
parents rearing children with ASD (Boyd, 2002;
Estes et al., 2009; Gray, 2003). For example,
Mori, Ujiie, Smith, and Howlin (2009) examined
families of children diagnosed with autism and
Asperger’s syndrome in Japan. Participants’ re-
sponses indicated that, on average, total parental
stress scores were at or above the 90th percentile
of normal parental stress. Using the same stress
measure, Davis and Carter (2008) found similar
results; self-reported experiences of stress were in
the clinically significant range for 39% of mothers
and 28% of fathers of children with ASD. How-
ever, it is important to note that stress levels can
vary over time as the child moves through each
developmental stage (Hastings, Kovshoff, Brown,
et al., 2005).
Research also indicates that mothers experience
higher levels of stress as compared to fathers and
122 J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
other family members of children with ASD
(Abbeduto et al, 2004; Eisenhower, Baker,
& Blacher, 2005; Estes et al., 2009; Hastings,
Kovshoff, Ward, et al., 2005; Herring et al., 2006;
Yamada et al, 2007). This is congruent with Estes
et al.’s (2009) statement that ‘‘no study to date
has found a group of mothers with higher
distress levels than mothers of children with
ASD’’ (p. 376). However, levels of stress in fathers
of children with ASD are often significantly
higher when compared to fathers of children
with other disabilities (Herring et al., 2006;
Sanders & Morgan, 1997).
In addition to, and perhaps related to stress,
parents of children with ASD are at greater risk
for and have demonstrated elevated levels of
mental health problems such as depression and
anxiety, as compared to other parents, including
those of children with disabilities (Abbeduto
et al., 2004; Benson & Karlof, 2009; Eisenhower
et al., 2005; Hamlyn-Wright, Draghi-Lorenz &
Ellis, 2007; Gray, 2002b; Hamlyn-Wright et al.,
2007; Olsson & Hwang, 2001). Mothers of
children with ASD have specifically been linked
to increased risk for depression (Davis & Carter,
2008; Olsson & Hwang, 2001), with significant
levels found in 33% of mothers (Abbeduto et al.,
2004; Davis & Carter, 2008) versus 17% of
fathers (Davis & Carter, 2008). In addition,
clinically significant levels of anxiety have been
reported in 6% of both mothers and fathers of
children with ASD (Davis & Carter, 2008).
Elevated levels of depressive symptoms, even at
the subclinical level, have been linked to im-
paired social, work, physical, and role function in
addition to lower well-being, quality of life, and
general health (National Institute of Mental
Health, 2010).
Sleep quality has also been identified as a pre-
dictor of caregiver psychological health (Meltzer
& Mindell, 2007; Polimeni, Richdale, & Francis,
2007). Regulatory problems, such as disrupted
sleeping (e.g., frequent night waking, early morn-
ing wake time, shorter total sleep time) are
commonly noted in children with ASD (Allik,
Larsson, & Smedje, 2006; Dominick, Davis,
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
Lainhart, Tager-Flusberg, & Folstein, 2007; Doo
& Wing, 2006; Polimeni, Richdale, & Francis,
2005). When the child’s sleep patterns are dis-
rupted, parental sleep is also likely to be affected,
with 80% of parents of children with ASD report-
ing disrupted sleep resulting from their child’s
sleep difficulties (Polimeni et al., 2005). Shorter
sleep duration and decreased sleep quality are
associated with stress, anxiety, depression, nega-
tive parent-child interactions, and chronic partial
sleep deprivation (Brummett et al., 2006; Galla-
gher, Phillips, Oliver, & Carroll, 2008; Meltzer,
2008; Polimeni et al., 2007), as well as decreased
Downloaded By: [University Of Southern California] At: 23:12 20 May 2011
carbohydrate tolerance and increased secretion of
cortisol (Spiegel, Leproult, & Van Cauter, 1999).
Chronic cortisol exposure has the potential to
increase age-related disorders such as diabetes and
hypertension (Mernar, 2006; Spiegel et al., 1999).
Although Matuska and Christiansen emphasize
physical safety as an important aspect of this
dimension, citing examples such as avoiding
addictive substances and wearing a seatbelt, we
found little evidence that parents of children with
ASD are at greater risk for problems with their
physical safety. However, parents may be placed at
greater risk for injury during a child’s aggressive
outburst. One parent noted that ‘‘to actually
physically restrain him and not get head butted
[is difficult] . . . it’s a real traumatic experience’’
(Gray, 1997, p. 1104). Additionally, in a long-
itudinal study, parents of children with more
aggressive tendencies experienced higher levels
of stress and lower quality of life, compared to
parents of non-aggressive children, who experi-
enced improved psychological well-being over
the 10 year study period (Gray, 2002b).
Discussion
A reorganization of the model of lifestyle balance
Utilizing Matuska and Christiansen’s (2008)
Model of Lifestyle Balance to better understand
the experiences of parents of children with ASD,
we found the five dimensions useful in organizing
the existing literature in order to articulate the
multiple occupational domains impacted by rear-
ing children with ASD. However, disentangling
J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
the literature into the five discrete dimensions
was a challenge. We support Matuska and
Christiansen’s claim that organizing time and
energy is contextual and therefore influences the
other four dimensions, see Figure 1. However,
separating creating meaning and a positive personal
identity and organizing time and energy to meet
important personal goals and personal renewal was
especially difficult as these constructs appear to
overlap substantially in the ASD population. The
opportunity to create a positive personal identity
is inextricably linked to available time for occu-
pational engagement and reflection about the self.
For example, a mother of a child with ASD may
seek to pursue a personally meaningful occupa-
tion such gardening. If the majority of her time is
devoted to caregiving, she may be forced to
relinquish this identity-defining occupation.
This inter-relationship between dimensions may
not be as intertwined for other populations.
We also concur that the environment provides
constraints and affordances that may influence
these parents’ occupational patterns. Environ-
mental factors such as family dynamics, work
obligations and the availability of community
resources can potentially obstruct or support
lifestyle balance. However, based on immersion
in the available literature as well as personal
clinical experience, we believe there are multiple
complex relationships among all constructs, see
Figure 2. The literature regarding parents of
children with ASD emphasizes the relationship
between biological health and the other four
dimensions. We propose that biological health is
bi-directionally related to all four other dimen-
sions. For example, lack of rewarding and self-
affirming relationships can contribute to increased
stress level, anxiety, and depressive feelings, as
well as decreased daily mood and perceived well-
being (Boyd, 2002; Pottie et al., 2009).
When the quality of the mother-child relationship
is not optimal, mothers may not feel engaged and
competent in the mothering role, which is asso-
ciated with elevated levels of parental stress,
anxiety, negative daily mood, caregiver strain,
depressive symptoms, and decreased general
123
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
Downloaded By: [University Of Southern California] At: 23:12 20 May 2011

Figure 1: Visual Depiction of the Model of Lifestyle Balance

Reprinted from ‘‘A Proposed Model of Lifestyle Balance,’’ by K. M. Matuska and C. H. Christiansen, 2008,
Journal of Occupational Science, 15, p. 15. Copyright 2008 by the Journal of Occupational Science. Reprinted
with permission.

well-being (Abbeduto et al., 2004; Davis & Carter,
2008; Greenberg, Seltzer, Krauss, Chou, & Hong,
2004; Lloyd & Hastings, 2009; Orsmond, Seltzer,
Greenberg, Kraus, 2006). When time and energy
are not organized to meet personal goals, parents
Organizing time
and energy
of children with ASD may experience increased
levels of stress, depression and overall decreased
well-being and life satisfaction (Boyd, 2002;
Matuska & Christiansen, 2008). Conversely, an
individual’s biological health can either limit or

Feeling interested, Creating

Rewarding and meaning and a
self-affirming engaged,
challenged and positive personal
relationships identity
competent

Biological health
and physical safety

= Buffering effects

= Deleterious effects

Figure 2: A Re-organization of Matuska and Christiansen’s Model of Lifestyle Balance

124 J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
promote perceived satisfaction in rewarding and
self-affirming relationships, feeling engaged and
competent, creating personal identity, and organizing
time and energy as described in the research
exploring chronic health conditions such as
multiple sclerosis (Matuska & Erickson, 2008),
arthritis (Kralik, Koch, Price, & Howard, 2004),
and schizophrenia (Bejerholm & Eklund, 2004).
Therefore, balance and imbalance in these four
dimensions can provide a buffer to, or increase
risk for, the negative effects of stress, as discussed
in the biological health dimension above.
Downloaded By: [University Of Southern California] At: 23:12 20 May 2011
Implications for research
Applying the literature regarding the experiences
of parents of children with ASD to Matuska and
Christiansen’s (2008) Model of Lifestyle Balance
suggests complex inter-relationships between
the five dimensions. These relationships should
be further examined through analysis of literature
on this and other populations with long-term
challenging life circumstances, which may affect
participation in valued occupations.
Matuska and Christiansen (2008, 2009) noted the
potential buffering or deleterious effects that
perceived balance or imbalance may have on
health and well-being. However, caring for a
child with ASD does not always lead to negative
health consequences (Bayat, 2007; King et al.,
2006; Olsson & Hwang, 2003; Phelps et al., 2009;
Woodgate et al., 2008) although our examination
of the literature yielded more limited accounts of
parents’ positive experiences of raising a child
with ASD. Future research should further explore
these positive experiences and the resulting
beneficial outcomes, such as resilience and buf-
fering effects on parents’ health and well-being.
As the particular needs, experiences, and chal-
lenges of parents of children with ASD continue
to be explored, occupational scientists can un-
cover the underlying mechanisms of buffering
effects and how these mechanisms may differ
between people with different life circumstances.
For parents of children with ASD, there may be
more to achieving lifestyle balance than just
the desire to, or recognition of the need to,
J O U R N A L O F O C C U PAT I O N A L S C I E N C E V O L 1 8 ( 2 ) , J U N E 2 0 1 1
change. In reviewing the literature, we found
that parents of children with ASD desire balance,
but may not be able to achieve it due to the highly
complex occupational demands of their role as
parent. Theorists and clinicians may assist these
parents by continuing to research the concept of
lifestyle balance and the personal and contextual
supports necessary to achieve it.
Conclusion
In this article, detailed consideration was given to
Matuska and Christiansen’s (2008) Model of
Lifestyle Balance which proposed that lifestyle
balance can be achieved when ‘‘an individual’s
unique patterns of occupation (in context) enable
needs essential to resilience, well-being and
quality of life to be met’’ (p. 11) in five occupa-
tional dimensions. We applied the model to the
specific population of parents of children with
ASD, asserting that this group is less likely to be
successful in meeting these needs throughout
all five dimensions. Overall, a variety of factors
associated with caring for children with ASD have
the potential to cause or contribute to negative
psychological consequences such as stress, anxi-
ety, and depression, as well as functional limita-
tions and other health problems. In order to
promote health and enhance well-being, lifestyle
changes may be necessary for many parents of
children with ASD.
The study provides evidence for the validity of
Matuska and Christiansen’s Model of Lifestyle
Balance, when applied to parents of children with
ASD. Based on this application, we discerned a
complex relationship among the five dimensions,
prompting a refinement of the graphic represen-
tation of the model to address the complexity in
this population. Despite our critique of their
model, we agree that Matuska and Christiansen’s
(2008) five dimensions are relevant to a compre-
hensive understanding of occupational patterns.
In addition, their suggestion of ‘perceived satis-
faction’ of occupational needs within the dimen-
sions is an innovative and credible way to
conceptualize lifestyle balance.
125
 LEAH I. STEIN, AMANDA C. FORAN & SHARON CERMAK
As previously remarked, theorists are currently
rethinking concepts of balance in occupational
science and other fields. Our paper contributes to
this effort by examining a model of lifestyle
balance for parents of children with ASD. Con-
tinued refinement and further expansion of con-
ceptual models of balance is necessary and
occupational science has the potential to con-
tribute substantially to this endeavor.
End Notes
1. Although we recognize the changing dynamics of
family life as more non-traditional caregivers
Downloaded By: [University Of Southern California] At: 23:12 20 May 2011
serve in the role of parent, their experiences
may be similar but not necessarily the same as
biological parents. The majority of literature to
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