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Families With Children Who Have Autism Spectrum Disorders:

Stress and Support

Article  in  Exceptional children · September 2010

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 Exceptional Children
Vol. 77, No. 1, pp. 7-36.
©2010 Council for Exceptional Children.

Families With Children

Who Have Autism Spectrum
Disorders: Stress and Support
HEDDA MEADAN
Illinois State University

JAMES W. HALLE
AARON T. EBATA
University of Illinois- Urbana-Champaign

ABSTRACT: Many individuals with autism spectrum disorders (ASD) have behavior repertoires
that might be expected to have an impact on members of both the immediate and extended family.
This article examines this impact, reviewing relevant literature related to stressors and supports for
families of individuals with ASD. The focus of the article highlights research on stressors and sup-
ports in the following areas (a) stress in the marital subsystem, (b) stress in the parental subsystem,
(c) stress in the sibling subsystem, (d) coping strategies used by families, and (e) informal and for-
mal sources of support used by families. Implications and recommendations for future research and
practice are discussed.

A utism spectrum disorders (ASD)

refers to a wide variety of
complex developmental disor-
ders that typically appear dur-
ing the first 3 years of life.
The fourth edition of the Diagnostic and Statisti-
cal Manual of Mental Disorders (DSM-IV-TR;
American Psychiatric Association, APA, 2000)
identifies ASD as part of a larger grouping, perva-
sive developmental disorders (PDD). According
the DSM-IV-TR there are five subtypes of PDD:
autistic disorder, Asperger’s syndrome (AS), child-
hood disintegrative disorder (CDD), Rett’s syn-
drome, and pervasive developmental disorder-not
otherwise specified (PDD-NOS). The three core
features of ASD are impairments in social interac-
tions, impairments in verbal and nonverbal com-
munication, and restricted and repetitive patterns
of behavior (APA, 2000). ASD affects approxi-
mately 1 in every 110 children and is growing at
a rate of 10% to 17% per year (Centers for Dis-
ease Control and Prevention, n.d.). This trend
has roused a growing interest in the impact of
autism on the family.
Many individuals with ASD have behavior
repertoires (e.g., limited verbal communication,
deficits in social behavior, aggressive behavior)
that might be expected to have an impact on
members of both the immediate and extended
family (Hastings, Kovshoff, Ward, et al., 2005).
Parents, primarily mothers, of individuals with
ASD reported significantly more stress and lower

Exceptional Children 7
levels of well-being than both parents of children
without disabilities and children with other dis-
abilities (e.g., Abbeduto et al., 2004; Baker-
Ericzen, Brookman-Frazee, & Stahmer, 2005;
Weiss, 2002). This stress could have a negative
impact on parents, leading to depression, anger,
anxiety, and marital discord (Bromley, Hare,
Davison, & Emerson, 2004; Higgins, Bailey, &
Pearce, 2005; Weiss, 2002). In addition, parents
of children with PDD reported lower levels of
quality of life compared to parents of children
with cerebral palsy or mental retardation (Mugno,
Ruta, D’Arrigo, & Mazzone, 2007). Furthermore,
a few researchers have reported negative outcomes
(e.g., loneliness) for typically developing siblings
of individuals with ASD (Hastings, 2003a; Rivers
& Stoneman, 2003).
Although research reveals an impact on fam-
ily members of individuals with ASD, Hastings,
Kovshoff, Ward, et al. (2005) emphasize that not
all family members experience similar effects as a
result of having an individual with ASD in the
family. For example, Hastings (2003b) found that
mothers of children with ASD reported more
anxiety and negative outcomes than fathers in the
same family. In addition, researchers have found
positive outcomes (e.g., limited conflicts within
the relationship, high self-esteem and self-con-
cept) for some typically developing siblings of in-
dividuals with ASD (Kaminsky & Dewey, 2002;
Pilowsky, Yirmiya, Doppelt, Gross-Tsur, &
Shalev, 2004) and some parents described the ex-
perience of having a child with ASD as being pos-
itive (Hutton & Caron, 2005).
To understand the different experiences of
family members, researchers have examined the
relationship between stress and negative outcomes
(e.g., depression) and between support systems or
strategies (e.g., respite services, social network)
and positive outcomes (Boyd, 2002; Jones &
Passey, 2004; Shu & Lung, 2005). Researchers
who conducted investigations (e.g., Sanders &
Morgan, 1997; Sharpley, Bitsika, & Efremidis,
1997) and authors who conducted reviews of in-
vestigations (e.g., Glasberg, Martins, & Harris,
2006) related to stress and coping among family
members of individuals with ASD, prior to 2000,
found that (a) mothers of children with ASD re-
ported more stress than mothers of children with
Down syndrome (DS) and with typically develop-
8 Fall 2010
ing children; (b) mothers of children with ASD
experienced more stress, anxiety, and depression
than fathers of children with ASD; (c) social sup-
port countered stress in parents of children with
ASD; and (d) there were contradictory findings
related to the adjustment of siblings of children
with ASD.
Hastings, Kovshoff, Ward, et al. (2005) re-
ported that “the majority of research to date has
considered the child with autism as a source of
stress and other family members’ well-being as the
outcome” (p. 636). This perspective describes
only unidirectional relationships between individ-
uals with ASD and their family members. How-
ever, it is possible that these relationships could be
bidirectional, meaning that family members could
also influence the individual with ASD (e.g., mar-
ital stress or maternal depression could influence
the child’s behavior). In addition, the relation-
ships among family members (e.g., parent–
typically developing children, mother–father)
could also impact family members’ stress and out-
comes. For example, Hastings (2003b) found that
mothers’ stress was related to behavior problems
of a child with ASD, whereas in the same fami-
lies, fathers’ stress was related only to their part-
ners’ depression.
Turnbull, Turnbull, Erwin, and Soodak
(2006) argued that the family system must be ex-
amined as a whole, and that understanding family
patterns of interaction is necessary to understand
a child with a disability and vice versa. According
to Turnbull et al., within a traditional nuclear
family, there are four major subsystems: (a) the
marital subsystem that includes interactions be-
tween spouses or significant others who function
as marital partners, (b) the parental subsystem
that includes interactions between parents and
their children, (c) the sibling subsystem that
includes interactions among brothers and sisters,
and (d) the extended family subsystem that in-
cludes interactions among members of the nu-
clear family and other relatives. We included only
the first three subsystems in our framework.
Interaction with the extended family and other
individuals outside of the family system will be
discussed as one potential support system for the
family. It is important to consider potential bidi-
rectional interaction among the three subsystems
(see Figure 1) and the stressors and supports that
FIGURE 1
Possible Interactions Among Family Subsystems
Siblings
Individual With
Autism Spectrum
Disorder
are associated with each subsystem; however, it
must be noted that there is little research on bidi-
rectional relationships in ASD families.
METHODS
We identified articles related to stress, coping, and
support in families that have a member with ASD
by conducting electronic and ancestral searches.
Criteria for inclusion in this literature review con-
sisted of studies (a) published between 2000 and
2007; (b) published in a peer-reviewed journal in
English; (c) that described a data-based study; (d)
that included parents and/or siblings of individu-
als with ASD as the focal participants; and (e)
that focused on stress, coping, or support of the
family members. Keywords used in an electronic
search of ERIC and PsycINFO databases in-
cluded autism, autism spectrum disorder, pervasive
developmental disorder, Asperger syndrome, family,
mother, father, siblings, brother, sister, stress, coping,
support, and adjustment. (We chose not to include
Rett’s syndrome in our keyword search because of
its clear genetic origin and its rare incidence.) Ad-
ditional articles were identified in the reference
sections of articles retrieved from the databases
and of review articles and book chapters on this
topic (i.e., ancestral methods). The search was
limited to peer-reviewed journal articles and did
not include books, dissertations, and other publi-
cations that did not undergo peer review.
Exceptional Children
Marital
Parents
Although ASD encompasses five subtypes (APA,
2000), only a few of the studies identified in-
cluded individuals with Rett’s syndrome and
CDD. As many researchers did not report their
results in terms of different subtypes, the findings
cannot be specified for each subtype.
Our search resulted in 57 journal articles.
Table 1 summarizes peer-reviewed, data-based ar-
ticles published between 2000 and 2007. The
table does not include studies that had only a
small percentage of individuals with ASD as their
participants (e.g., Blacher & McIntyre, 2006) and
those that focused primarily on individuals with
ASD (and not their families) and/or on interven-
tions for individuals with ASD.
Based on our framework (i.e., subsystems
within the family) and the focus of this article
(i.e., stressors and supports), we organized the
content in the following sections: (a) stress in the
marital subsystem, (b) stress in the parental sub-
system, (c) stress in the sibling subsystem, and (d)
bidirectional relationships between subsystems.
Families managed stressors by focusing on (e)
coping strategies employed by families, and (f ) in-
formal and formal sources of support employed
by families.
Due to the limited information specifically
related to ASD for a specific subsystem within the
family, we included research that focused on fami-
lies of children with developmental disabilities
9
 TABLE 1

10
Peer-Reviewed, Data-Based Articles Published Between 2000 and 2007
ASD Characteristics of
Study (Year) Purpose and Method(s) Focus Groupa Individuals With ASD Main Findings
Abbeduto, Seltzer, Purpose: To compare the psychological well- 174 mothers ASD Mothers of individuals with ASD reported more dis-
Shattuck, Krauss, being of mothers of individuals with Fragile M = 46 years 73% M tant relationship with the child with disability and
Orsmond, & X, DS, and autism R = 10–23 years higher levels of depression than comparison groups.
Murphy (2004) Method: Mothers’ self-administered measures The most consistent predictor of maternal outcomes
was the behavioral symptoms of the individual with
disability.
Allik, Larsson, & Purpose: To evaluate the health-related quality 31 mothers AS/HFA Mothers (but not fathers) of school-age children with
Smedje (2006) of life in parents of children with ASD or M = 42 years 28 M AS/HFA reported impaired health related to quality of
HFA R = 28–54 years 4F life. A relationship between maternal well-being and
Methods: Parents’ self-administered measures; M = 10 years child’s behavior characteristics (e.g., hyperactivity and
30 fathers
Teachers completed behavior checklist R = 8–12 years conduct problems) was found.
M = 45 years
R = 35–64 years
Baker-Ericzen, Purpose: To examine parental stress before 37 mothers ASD Parents of toddlers with ASD reported significantly
Brookman-Frazee, and after involvement in an inclusive toddler M = 32 years 29 M higher levels of child- and parent-related stress com-
& Stahmer (2005) program (parents of children with ASD and 27 fathers 8F pared to parents of typically developing toddlers.
parents of typically developing children) M = 28 months Mothers of children with ASD showed significant re-
M = 35 years
Methods: Quasiexperimental pre-/postdesign; ductions in child-related stress after program participa-
Parents’ self-administered measures tion.

Bayat (2007) Purpose: To examine the resilience in families 134 mothers ASD Despite extraordinary challenges faced by families of
with children with autism 30 fathers 141 M children with ASD, a number of these families show
Method: Qualitative analysis of caregivers’ 11 other 34 F evidence of resilience: reporting on becoming stronger
written answers to 3 open-ended questions. M = 41 years M = 10 years for M as a result of disability in the family.
M = 11 years for F
R = 2 -18 years
Benson (2006) Purpose: To investigate the relationship be- 60 mothers ASD Raising a child with ASD can result in serious psycho-
tween the severity of the child’s symptoms, 8 fathers 88% M logical distress in parents. Informal parent support
stress proliferation, and parent depression and M = 38 years 12% F ameliorated depression in parents whose children had
to examine the role of social support in reduc- R = 28–61 years M = 7 years milder symptoms.
ing stress proliferation and depression R = 39–18 months
Method: Parents’ self-administered measures

Fall 2010
 Bishop, Richler, Purpose: To examine the perceived negative 110 mothers ASD African American mothers reported less perceived
Cain, & Lord impact of parenting a child with ASD 6 fathers 98 M negative impact than Caucasian mothers. Child
(2007) Methods: Parents: structured interviews 12 F characteristics were not predictors of perceived negative
including a few standardized measures; M = 9 years impact. Mothers with fewer children in the home re-
Children: assessment measures ported higher perceived negative impact.

Exceptional Children
Bromley, Hare, Purpose: To examine the impact of having a 68 mothers ASD The results of the study indicated that high levels of
Davison, & child with autism on mothers’ psychological 57 M psychological distress in mothers of children with
Emerson (2004) well-being 14 F autism were associated with low levels of family
Methods: Structured interviews including a R = 5–18 years support and with high levels of child’s challenging
few standardized measures behavior.

Brookman-Frazee Purpose: To examine the effects of two parent 3 mothers Autism During the partnership, condition mothers had lower
(2004) education conditions (parent/clinician 3M levels of observed stress and higher levels of observed
partnership vs. clinician-directed model) on M = 31 months confidence compared to during the clinician-directed
mothers and their children with autism R = 29–34 months condition. Children also demonstrated more positive
Methods: Repeated reversal design; affect, higher levels of responding, and appropriate
Observational data engagement in the partnership condition.
Dale, Jahoda, & Purpose: To examine the way mothers make 16 mothers ASD Mothers had low levels of depression and high expecta-
Knott (2006) sense of the initial diagnosis of autism R = 28–44 years 11 M tions for their children’s future. The mothers’ stress
Methods: Focus group; Mothers’ self- 5F level was high. There was a great disparity in the attri-
administered measures R = 3–9 years butions the mothers made in relation to their children.

Duarte, Bordin, Purpose: To explore the causes of stress for 31 mothers Autism Having a child with autism seemed to be the main
Yazigi, & Mooney mothers of children with autism M = 32.9 years 29 M cause of stress; however, other factors such as poor
(2005) Method: Standardized assessment (Rorschach R = 22–45 years 2F affect, lack of interest in others, having a younger child,
test) M = 6 years and being an older mother were also found to be
R = 3–12 years contributing causes of stress.

Dunn, Burbine, Purpose: To determine the effect of various 39 mothers Autism The results indicated that the relationship between
Bowers, & stressors and subsequent coping styles on the 19 fathers M = 7 years stressors and negative outcomes was moderated by
Tantleff-Dunn well-being of parents of children with autism M = 36 years R = 3–15 years social support and coping style. The use of escape and
(2001) Method: Parents’ self-administered measures R = 25–67 years avoidance as coping strategies was found to correspond
to increased depression, isolation, and marital
problems.

continues

11
 T A B L E 1 Continued

12
ASD Characteristics of
Study (Year) Purpose and Method(s) Focus Groupa Individuals With ASD Main Findings
Gray (2002) Purpose: To examine the experiences of 19 mothers Autism Two thirds of parents reported that their situation was
parents and other family members in coping 9 fathers 13 M better than it had been 10 years before. Parents of chil-
with the changing problems of a child with 7F dren who exhibited aggressive behaviors reported high
autism over time. R = 13–27 years levels of stress and dissatisfaction with the level of ser-
Method: Semistructured interviews vices they received.

Gray (2003) Purpose: To explore the role of gender and 32 mothers AS Mothers assumed disproportionate responsibility for
coping among parents of children with AS 21 fathers R = 5–26 years caregiving. Fathers reported an indirect effect of the
Method: Semistructured interviews child’s disability on their lives, whereas mothers re-
ported emotional distress and lifestyle changes (e.g.,
abandoned a career) associated with the responsibility
of interacting with medical and educational systems.
Gray (2006) Purpose: To examine how parents of children 19 mothers Autism Coping strategies changed over time. The total number
with autism cope over time (8–10 years) 9 fathers 13 M of coping strategies reported by parents declined. The
Method: Semistructured interviews 7F researcher found a shift from problem-focused coping
M = 18 years strategies toward emotion-focused coping strategies.
(at follow-up)
Hare, Pratt, Purpose: To investigate the health and social 77% mothers ASD Strong association between parental emotional distress
Burton, Bromley, care needs of families supporting adults with 23% fathers 22 M and unmet needs. Parents reported need for autism-
& Emerson ASD 4F specific interventions and support.
(2004) Methods: Parents’ structured interviews M = 27 years
including a few standardized measures R = 20–40 years
Hastings (2003a) Purpose: To explore the adjustment of siblings 78 siblings Autism Study found no evidence of a negative effect on siblings
of children with ASD engaged in intensive R = 4–16 years 89% M of young children with autism engaged in intensive
ABA early intervention programs 78 mothers 11% F ABA programs.
Method: Mothers’ self-administered measures R = 26–51 years M = 5 years Siblings in families with children with autism who ex-
hibited less severe behavior had fewer adjustment prob-
lems when formal social support was available to the
families.
Hastings (2003b) Purpose: To investigate what variables might 22 siblings ASD Siblings of children with autism were found to have
affect adjustment of siblings of children with R = 4–16 years 17 M more peer problems, increased adjustment issues, and
ASD 26 mothers 9F lower prosocial behavior than children in the normative
Methods: Mothers’ self-administered mea- M = 12 years sample.
M = 41 years

Fall 2010
sures; Teachers completed behavior checklist R = 7–16 years
 Hastings (2003c) Purpose: To explore the interrelationships 18 mothers Autism Mothers and fathers did not differ in their levels of
between and psychological well-being of M = 41 years 13 M stress or depression. However, mothers reported more
mothers and fathers of a child with autism 18 fathers 5F anxiety than fathers. Child behavior problems and
Methods: Parents’ self-administered measures; M = 11 years father’s mental health were found to be associated with
M = 43 years
Teachers completed behavior checklist R = 8–17 years mother’s stress.

Exceptional Children
Hastings & Purpose: To explore predictors of stress of 130 mothers Autism Parents of children with autism reported more stress
Johnson (2001) parents participating in intensive home-based 11 fathers 90% M than parents of children with other disabilities.
intervention for young children with ASD M = 37 years 10% F Adaptive coping strategies, informal social support,
Method: Parents’ self-administered measures R = 26–53 years M = 5 years and belief in the efficacy of the intervention were
associated with lower stress; more severe child symp-
toms were associated with higher stress.
Hastings, Purpose: To explore coping strategies, stress, 74 mothers Autism Active avoidance coping and religious/denial coping
Kovshoff, Brown, and mental health of parents of children with 61 fathers 59 M were related to more stress and mental health problems
Ward, Espinosa, autism 15 F in both mothers and fathers. Positive coping was
& Remington Method: Parents’ self-administered measures R = 2–17 years associated with lower levels of depression, and
(2005) problem-focused coping was not associated with
parental stress or mental health.
Hastings, Purpose: To explore the psychological func- 48 mothers Autism The results indicated that paternal stress and positive
Kovshoff, Ward, tioning in families of children with autism M = 34 years 41 M perceptions were predicted by maternal depression.
Espinosa, Brown, Methods: Parents’ self-administered measures; 41 fathers 7F Maternal stress was predicted by their child’s behavior
& Remington Mothers: structured interview M = 37 months problems and by their partner’s depression. In addition,
M = 38 years
(2005) R = 28–45 months mothers and fathers identified positive perceptions
about their child and his or her impact on themselves
and other family members.
Herring, Gray, Purpose: To explore the effects of emotional 79 mothers Autism/PDD Behavior and emotional problems were found to have
Taffe,Tonge, and behavioral problems in toddlers with 72 fathers R = 20–51 months a significant impact on parent outcome, with the
Sweeney, & PDD and with developmental delays on their exception of father stress. Fathers consistently reported
Einfeld (2006) parents and families less stress than mothers. Fathers with children with
Methods: Parents’ structured interviews; PDD were more stressed than fathers of children with
Parents’ self-administered measures; delays without PDD. Child emotional and behavioral
Children: assessment measures problems contributed significantly more to mother
stress than child diagnosis (PDD or non-PDD), delay,
or gender.

continues

13
 T A B L E 1 Continued

14
ASD Characteristics of
Study (Year) Purpose and Method(s) Focus Groupa Individuals With ASD Main Findings

Higgins, Bailey, Purpose: To examine the relationship between 50 mothers ASD Primary caregivers of a child with ASD reported lower
& Pearce (2005) ASD characteristics, family functioning, and 2 fathers 48 M marital happiness, family adaptability and family cohe-
coping strategies 6F sion than normative data; however, there was no evi-
Method: Parents’ self-administered measures M =10 years dence of lower self-esteem. Coping strategies did not
appear to be related to marital or family adjustment.
Hutton & Caron Purpose: To examine how families adapt to 19 mothers Autism Most parents expressed that the experience of having
(2005) having a child with autism 2 fathers 17 M a child with autism was stressful. A few parents talked
Method: Parents’ semistructured interviews 4F about the experience as being positive.
R = 3–16 years
Jarbrink, Purpose: To describe how to approach the 15 parents ASD Results indicated considerable economic burden for
Fombonne, & collection of cost information concerning 14 M parents and gave some indication of the associated
Knapp (2003) informal care of individuals with ASD 3F costs of ASD.
Method: Parents’ self-administered measures M = 8 years
R = 4–10 years
Kaminsky & Purpose: To examine the adjustment of 30 siblings Autism Results of study indicated that siblings of children with
Dewey (2002) siblings of children with autism compared to M = 12 years M = 10 years autism were not at an increased risk for loneliness or
siblings of children with DS or those who R = 8–18 years difficulties with social adjustment; their perceptions of
were typically developing social support were also not different from those of
Methods: Siblings’ and parents’ self- children in the comparison groups, and they did not
administered measures present with deficits in social competency.
Lecavalier, Leone, Purpose: To examine the effects of behavior 86% mothers ASD Data indicated that behavior problems were strongly
& Wiltz (2006) problems and level of functioning of children 14% fathers 243 M associated with stress; however, the teachers and
with ASD on caregivers’ stress M = 40 years 50 F parents did not perfectly agree on the nature and
Methods: Parents’ and teachers’ self- M = 9 years severity of the behavior problems.
administered measures R = 3–18 years
Luther, Canham, Purpose: To assess the perceived coping 18 parents Autism Families reported stressors in addition to the child’s
& Cureton strategies and social support of parents of 14 M disability, and most often used social support and
(2005) children with autism 4F reframing as coping strategies.
Method: Parents’ self-administered measures M = 8 years
R = 5–13 years

Fall 2010
 Mackintosh, Purpose: To examine sources of information 498 parents ASD Parents reported the most frequent source of both
Myers, & and support reported by parents of children 398 M support and information was other parents of children
Goin-Kochel with ASD 100 F with ASD. Lower-income parents used fewer supports
(2006) Method: Parents’ self-administered measures M = 9 years and information sources.

Exceptional Children
Macks & Reeve Purpose: To examine and compare the 51 siblings Autism Siblings of children with autism appeared to have a
(2007) psychosocial and emotional adjustment of R = 7–17 years more positive self-concept than did siblings of typically
siblings of children with autism and siblings developing children. The presence of a child with
of typically developing children autism appeared to have a negative impact on the
Methods: Parents’ and siblings’ self- typically developing sibling as demographic risk factors
administered measures increased.
Mascha & Purpose: To develop a method of gathering 14 siblings ASD Although a majority of participants reported some
Boucher (2006) information about the subjective experiences M = 15 years M = 11 years positive aspects of having a sibling with ASD, many
of siblings of children with ASD R = 11–18 years R = 7–20 years perceptions and experiences were negative—specifically
Method: Siblings’ semistructured interviews related to the individual’s problem behaviors, being
embarrassed by the individual, and aggressive behavior
as demonstrated by the individual with ASD.
Mugno, Ruta, Purpose: To evaluate and compare the quality 39 mothers ASD Parents of children with PDD reported lower quality
D’Arrigo, & of life of parents of children with PDD, cere- 30 fathers 42 M of life and impairment in physical activity and social
Mazzone (2007) bral palsy, mental retardation, and typically M = 37 years 11 F relationships compared to the other groups. Mothers of
developing children M = 7.5 years children with PDD had lower quality of life compared
Method: Parents’ self-administered measures R = 3–17 years to fathers.

Orsmond & Purpose: To examine whether type of 77 siblings ASD Siblings of individuals with ASD spent less time
Seltzer (2007) disability impacts sibling relationships, M = 38 years 56 M with and had less close relationships than siblings of
and whether disability type is associated R = 21–56 years 21 F individuals with DS; siblings of individuals with DS
with positive and negative aspects of the M = 35 years were more optimistic about their sibling’s future. A
sibling relationship closer sibling relationship was observed when the
Methods: Siblings’ and mothers’ self- sibling used problem-focused coping strategies.
administered measures
Pakenham, Purpose: To understand the factors influenc- 47 mothers AS Double ABCX model may explain adjustment process.
Samios, & ing adjustment in mothers of children with 40 M Maternal adjustment was related to higher levels of
Sofronoff (2005) AS 7F social support, low levels of child behavior problems,
Method: Mothers’ self-administered measures R = 10–12 years pile-up of demands, stress appraisals, and passive
avoidant coping. Problem-focused coping was
unrelated to adjustment.

15
continues
 T A B L E 1 Continued

16
ASD Characteristics of
Study (Year) Purpose and Method(s) Focus Groupa Individuals With ASD Main Findings

Perry, Harris, & Purpose: To explore the family environment
Minnes (2004) and family harmony in parents of children
with developmental disabilities (i.e., autism,
Rett syndrome, Fragile X, DS, unknown
etiology)
Method: Parents’ self-administered measure
55 mothers Autism Family environment as reported by participants
24 fathers R = 0–18 years resembled typical/healthy family’s environment more
than distressed families. Families of children with
developmental delays of unknown etiology and
children with autism reported the lowest levels of
family harmony.

Pilowsky, Yirmiya, Purpose: To examine the social and emotional 30 siblings Autism Siblings of children with autism were relatively well
Doppelt, Gross- adjustment of siblings of children with autism M = 9 years M = 9 years adjusted and were not necessarily associated with
Tsur, & Shalev Methods: Siblings’ and parents’ self- R = 6–10 years increased vulnerability for social and emotional
(2004) administered measures and interviews difficulties.

Pisula (2007) Purpose: Compare stress in mothers of 25 mothers Autism Mothers of children with autism reported higher stress
children with ASD to mothers of children M = 38 years 17 M levels compared to mothers of children with DS.
with DS R = 26–56 years 8F Mothers of children with autism were most concerned
Method: Mothers’ self-administered measures about their children’s dependence on the care of others,
M =11 years their children’s future, and the permanency of their
R = 4–20 years condition.

Rivers & Purpose: To examine if family factors (i.e., 50 siblings ASD When marital stress was higher, siblings were less
Stoneman marital stress and coping by seeking social M = 9 years 42 M satisfied with their sibling relationship. Informal
(2003) support) affect quality of sibling relationships R = 7–12 years 8F support buffered the deleterious effects of marital
when one child has autism M = 7 years stress on positive, but not negative, aspects of the
49 mothers
Methods: Siblings’ and parents’ self- R = 4–12 years siblings’ relationships.
1 father
administered measures
M = 37 years
R = 30–49 years

Ross & Cuskelly Purpose: To investigate adjustment and 25 siblings ASD Aggressive behavior was the most commonly reported
(2006) coping strategies of siblings of children with M = 10 years 20 M interaction problem between siblings, and anger was
ASD R = 8–15 years 5F the most common response. Coping strategies and
Methods: Siblings’ and parents’ self- M =11 years knowledge of autism were not associated with adjust-
administered measures R = 6–16 years ment. Scores on the Child Behavior Checklist placed
40% of siblings in the clinical or borderline range.

Fall 2010
 Schwichtenberg Purpose: To assess how home-based ABA 41 mothers ASD Mothers of children participating in ABA program
& Poehlmann program for children with ASD impacts the M = 37 years M = 6 years reported more depression than mothers of children
(2007) family R = 24–49 years R = 3–14 years with other developmental delays. ABA intensity was
Method: Mothers’ self-administered measures related to maternal depression and personal strain.

Exceptional Children
Sharpe & Baker Purpose: To identify factors associated with 333 parents Autism This study indicated that a diagnosis of autism for a
(2007) financial problems in families with children R = 1–18 years family causes a large financial burden, which is more
with autism intense when early intervention occurs (due to the
Method: Parents’ self-administered measures therapy needed).

Shu & Lung Purpose: To explore the effect of support
(2005) groups on the mental health and quality of
life for mothers of children with autism
Methods: Quasiexperimental pre-/postcontrol
group design; Mothers’ self-administered
measures
27 mothers Autism Mental health did not significantly improve in the
M = 41 years intervention group compared to those in the control
R = 30–51 years group. Subjective well-being and employment status
were found to have an effect on mothers’ mental
health. Only the subjective well-being had an effect
on their quality of life.

Siklos & Kerns Purpose: To explore and compare the 56 mothers ASD Families of both groups reported a similar number
(2006) perceived needs for social support by parents M = 39 years 39 M of important needs and important needs being met.
of children with ASD and DS R = 24–50 years 17 F Mothers of children with autism reported less
Method: Mothers’ self-administered measures satisfaction with services and help received since
M = 8 years the time of the diagnosis.
R = 3–18 years
Sivberg (2002) Purpose: To explore and compare family sys- 37 mothers ASD Lower levels of coping were associated with higher lev-
tems and coping behaviors of parents of chil- 29 fathers 21 M els of strain on the family system, and the level of strain
dren with ASD and parents of typically R = 25–62 years 16 F on the family system was greater in the families with a
developing children child with ASD. Parents of children with ASD used
R = 1–26 years more distancing and escape strategies whereas those in
Method: Parents’ self-administered measures
the control group use more problem-solving strategies.

Smith & Perry Purpose: To examine the effectiveness of a sib- 26 siblings N/A Results indicated that siblings’ self-concepts and
(2005) ling support group for siblings of children M = 10 years knowledge of autism improved significantly from the
with ASD R = 6–16 years beginning to the end of the sibling support group.
Methods: Quasiexperimental pre-/postdesign;
Siblings and parents’ self-administered
measures

continues

17
 T A B L E 1 Continued

18
ASD Characteristics of
Study (Year) Purpose and Method(s) Focus Groupa Individuals With ASD Main Findings

Tarakeshwar & Purpose: To assess the use of religious coping 43 mothers Autism Religious coping accounted for better religious out-
Pargament (2001) methods among parents of children with ASD 2 fathers 36 M comes and stress-related growth; negative religious
Methods: Parents’ self-administered measures 9F coping was associated with increased depression and
and semistructured interviews M = 10 years low religious outcome
R = 4–24 years

Thomas, Ellis, Purpose: To identify family characteristics 383 families ASD Families used a broad array of services. Access to care
McLaurin, associated with use of autism services 97% mothers 333 M was limited for low-income families and racial/ethnic
Daniels, & Methods: Parents’ self-administered measures 50 F minorities, those living in nonmetropolitan areas, and
Morrissey (2007) and structured interviews M = 7 years those not following a major treatment approach;
R = 0–11 years increased stress is associated with higher service use.

Tobing & Purpose: To investigate the psychosocial 97 mothers ASD Parenting competence and satisfaction with social
Glenwick adaptation of mothers of children with ASD 85 M support were negatively related to maternal distress.
(2006) Method: Mothers’ self-administered measures 11 F Number of coping strategies and number of social
M = 9 years supports were not found to be significantly related to
R = 2–18 years maternal distress.

Tomanik, Harris, Purpose: To examine the relationship between 60 mothers ASD Mothers of children with ASD reported higher levels
& Hawkins the child with ASD’s adaptive and maladap- M = 35 years 51 M of stress when their children were more irritable,
(2004) tive behavior and perceived levels of maternal R = 26–46 years 9F lethargic/socially withdrawn, hyperac-
stress M = 5 years tive/noncompliant, unable to take care of themselves,
Method: Mothers’ self-administered measures R = 2–7 years and unable to communicate or interact with others.

Tonge, Brereton, Purpose: To examine the impact of a parent 105 parents Autism Results indicated that both a parent education and
Kiomall, education and behavior management R = 25–43 R = 2–5 years skills training program and a parent education
Mackinnon, intervention on the mental health and counseling program for parents of young children with
King, & Rinehart, adjustment of parents of preschool children autism was of benefit to their mental health and well-
(2006) with autism being.
Methods: Randomized, group comparison
design; Parents’ pre- and posttreatment self-
administered measures

Fall 2010
 Trudgeon & Carr Purpose: To investigate the positive impacts 9 mothers ASD Parents reported positive and negative impacts of the
(2007) and stressors of families running early 7 fathers 8M programs. Sources of support obtained through the
intensive behavioral intervention programs R = 31–45 years 1F programs offset the demands of the programs.
Method: Semistructured interviews R = 4–9 years

Exceptional Children
Tunali & Power Purpose: To examine and compare coping
(2002) strategies of mothers of children with and
without autism
Methods: Mothers’ self-administered
measures and semistructured interviews
29 mothers Autism Mothers of children with autism were more likely than
22 M mothers of typically developing children to place less
7F emphasis on career success, spent more leisure time
with extended family, were less concerned about others’
M = 9 years opinions of their child’s behavior, emphasized spousal
R = 5–14 years support and parental roles, had more difficulty under-
standing their child’s behavior, and had a marginally
higher tolerance for ambiguity.

Twoy, Connolly, Purpose: To identify the coping strategies
& Novak (2007) used by families with children with ASD
Method: Parents’ self-administered measures
29 mothers ASD Parents of children with ASD were resilient in adapting
22 fathers < 12 years to challenges of raising a child with ASD. Using a
R = 31–50 years social support system was a large part of the family’s
coping strategies. The support included close friends,
extended families, other families with the same
situation, and agencies and programs.

Verte, Roeyers, & Purpose: To investigate the psychological
Buysse (2003) adjustment of siblings of children with HFA
in comparison with siblings of typically
developing children
Methods: Siblings’ and parents’ self-
administered measures
29 siblings ASD Siblings of children with HFA were not more
M = 11 years 28 M susceptible to adaptation problems than siblings of
R = 6–16 years 1F children without disorders. Siblings between 6- and
11-years old had more internalizing and externalizing
M = 11 years behavior problems than siblings of typically developing
R = 9–16 years children. Sisters of children with HFA, 12–16 years,
had higher social competence and more positive self-
concept compared to the control group.

Weiss (2002) Purpose: To assess the effects of social support
and hardiness on the level of stress in mothers
of typical developing children, children with
autism, and children with mental retardation
Method: Mothers’ self-administered measures
40 mothers Autism Mothers of children with autism experienced more
R = 24–48 years R = 2–7 years negative effects of stress than mothers of children with
mental retardation and mothers of typically developing
children. Both social support and individual character-
istics were found to aid effective coping and reduce
negative effects of stress.

continues

19
 T A B L E 1 Continued

20
ASD Characteristics of
Study (Year) Purpose and Method(s) Focus Groupa Individuals With ASD Main Findings

Whitaker (2002) Purpose: To assess parents’ levels of satisfac-
tion with support services provided and
explore parental responses to the different
components of the support offered
Method: Semistructured interviews
mothers ASD Parents valued practical strategies for facilitating lan-
< 5 years guage and engaging in interactive play. The most fre-
quently expressed unmet need at the point of diagnosis
was for information about ASD in general and local
educational and support options available.

Yamada, Suzuki, Purpose: To evaluate emotional stress of 147 mothers ASD Parents of children with ASD reported higher levels of
Kato, Suzuki, parents of children with ASD and to explore M = 38 years 129 M stress compared to normative data. The personality
Tanaka, Shindo, the correlates to their emotional stress 29 F trait of the parents, the children’s behavior, and trou-
122 fathers
…Furukawa, Method: Parents’ self-administered measures bles with schoolmates were found to be the most
(2007) M = 41 years R = 7–12 years closely associated with the parent emotional stress
levels.

Note. ASD = autism spectrum disorders; M = mean age; R = age range; M = male; F = female; ABA = applied behavior analysis; AS = Asperger’s syndrome; HFA = high
functioning autism; DS = Down syndrome; PDD = pervasive developmental disorder.
aDoes not include information (e.g., number, gender, age) of comparative groups (e.g., parents of typically developing children).

Fall 2010
(DD) and other disabilities. In these instances, we
have indicated this focus explicitly.
STRESSORS
M A R I TA L SUBSYSTEM
There is limited published information about the
impact of having a child with ASD on the marital
relationship. Some researchers have found that
having a child with a disability has a negative im-
pact (e.g., higher divorce rate) on marriages; oth-
ers have found no differences between families
with and without a child with a disability. In a re-
view focused on marital adjustment in parents of
children with disabilities, Risdal and Singer
(2004) found “a detectable overall negative im-
pact on marital adjustment, but this impact is
small and much lower than would be expected
given earlier assumptions about the supposed in-
evitability of damaging impacts of children with
disabilities on family well being” (p. 101). Hig-
gins et al. (2005) reported that mothers and fa-
thers of a child with ASD had lower levels of
marital happiness, family adaptability, and family
cohesion (i.e., less flexibility and a lack of warmth
and connection) than normative data would
suggest.
Due to the dearth of published information
about the impact of having a child with ASD on
the marital relationship, we also examined infor-
mation related to the family as a unit. Perry, Har-
ris, and Minnes (2004) found that parents of
children with autism reported the lowest level of
family harmony when compared to parents of
children with other developmental disabilities
(i.e., DS, Rett’s syndrome, and Fragile X). The
authors argued that although families of children
with DD report higher levels of stress than typical
families, this stress may not produce negative out-
comes for the family. They reported that families
with children with DD were doing as well as or
better (in terms of coping resources available, or-
ganization, and moral-religious emphasis) than
families with typically developing children. Inter-
estingly, these authors (Perry et al., 2004) re-
ported that family harmony was lower among
families of children with autism and developmen-
Exceptional Children
tal disorders where the cause of the child’s DD
was unknown versus clearly understood.
P A R E N TA L S U B S Y S T E M
Mothers and fathers of children with ASD re-
ported more stress than parents of children with
DS and parents of typically developing children
(Hastings & Johnson, 2001; Perry at al., 2004;
Poston et al., 2003). Benson (2006) reported that
parents of children with ASD were at increased
risk for poor mental health, not only because of
the demands of caring for a child with ASD, but
also because of other stressors engendered or exac-
erbated by their child’s disability. In a longitudi-
nal study of parental stress, Baxter, Cummins,
and Polak (1995) concluded that the time of di-
agnosis of a DD was the most stress-inducing pe-
riod for parents, followed by the time when the
child entered school and then when they encoun-
tered the transition from school to work. Hare,
Pratt, Burton, Bromley, and Emerson (2004) re-
ported a strong association between emotional
stress and unmet need in parents of adults with
ASD. It is possible that parents experience differ-
ent stressors when their children are at different
ages.
In a longitudinal study of the psychological
adaptation of parents of children with autism,
Gray (2002) reported that the psychological well-
being of most of the participating parents im-
proved over the 8 to 10 years between interviews.
However, parents of children with autism who
had challenging behavior did not report improve-
ment and indicated high levels of stress.
In their investigation, Sharpley et al. (1997)
reported that the three most stressful factors for
parents of children with ASD were (a) the perma-
nency of the condition, (b) the lack of acceptance
of behavior associated with ASD by family mem-
bers and society, and (c) the low levels of support
provided. The current review revealed additional
sources of stress for parents of individuals with
ASD that were identified by other researchers in-
cluding (d) the economic burden of raising a
child with ASD, including the negative impact on
parents’ career and/or income (Jarbrink, Fom-
bonne, & Knapp, 2003; Sharpe & Baker, 2007);
(e) parents’ concerns about the future for their
children, specifically problems that may arise
21
when the children reach adulthood (Hare et al.,
2004; Pisula, 2007); (f ) challenging behavior of
children with ASD (Bromley et al., 2004; Hast-
ings, 2003b; Hastings, Kovshoff, Ward, et al.,
2005; Lecavalier, Leone, & Wiltz, 2006); and (g)
psychological characteristics of the parents such as
perceived self-efficacy, locus of control, and cop-
ing style (Dunn, Burbine, Bowers, & Tantleff-
Dunn, 2001; Sivberg, 2002; see Table 1).
Mothers of Children With ASD. Mothers and
fathers share parenting roles, but mothers typi-
cally assume a larger part of the responsibility of
meeting the needs of the child with ASD (Gray,
2003). Most of the research on stress levels of par-
ents of individuals with ASD has been conducted
with mothers (e.g., Tomanik, Harris, & Hawkins,
2004). Although a few researchers (Benson, 2006;
Hastings, Kovshoff, Ward, et al., 2005) found no
significant maternal-paternal differences in re-
ported stress, other researchers have found that
mothers of individuals with ASD reported more
stress, depression, and anxiety than fathers (Hast-
ings, 2003b; Herring et al., 2006). In addition,
mothers of individuals with ASD reported more
stress than mothers of individuals with DS
(Pisula, 2007) and mothers of typically develop-
ing children (Yamada et al., 2007).
Mothers and fathers share parenting
roles, but mothers typically assume a larger
part of the responsibility of meeting the
needs of the child with ASD.
The findings related to the variables that are
associated with mothers’ stress and adjustment are
mixed. Duarte, Bordin, Yazigi, and Mooney
(2005) concluded that having a child with ASD is
the main factor associated with a mother’s stress.
However, certain personality and demographic
factors of the mother also are associated with ma-
ternal stress. Expressing little affection, having
low interest in people, and being an older mother
(34–45) were found to contribute to stress in
mothers of children with ASD (Duarte et al.,
2005). Pakenham, Samios, and Sofronoff (2005)
reported that older mothers (ages were not speci-
fied) of children with AS and those with higher
22
annual income reported better adjustment. Hast-
ings and Johnson (2001) found that parents’
(92% mothers) stress levels were predicted mainly
by psychological (e.g., coping strategies, social
support) rather than demographic variables. In
addition, Bromley et al. (2004) found that lower
levels of perceived support in mothers of children
with ASD were associated with significant psy-
chological distress. Mothers were more likely to
report lower levels of support if they were single
parents, living in poor housing, or were parenting
a boy with ASD.
In a few studies maternal stress and well-
being were found to be related to children’s chal-
lenging behavior and severity of the behavioral
symptoms (e.g., Abbeduto et al., 2004; Allik,
Larsson, & Smedje, 2006; Bromley et al., 2004;
Hastings, 2003b; Hastings & Johnson, 2001;
Herring et al., 2006). More specifically, Tomanik
et al. (2004) reported that mothers of children
with ASD reported the greatest stress when their
children were more irritable, socially withdrawn,
hyperactive/noncompliant, unable to take care of
themselves, and unable to communicate or inter-
act with others. (See Table 1 for more details).
Only a few studies have explored cultural dif-
ferences in the relationship between stress and
parenting a child with ASD. Bishop, Richler,
Cain, and Lord (2007) found that African Ameri-
can mothers of children with ASD reported lower
levels of perceived negative impact of having a
child with ASD than Caucasian mothers. Simi-
larly, Blacher and McIntyre (2006) reported that
Latino mothers of children with intellectual dis-
ability (8% with ASD) perceived their children to
have more positive effect on their lives than Cau-
casian mothers. Interestingly, Blacher and McIn-
tyre found that mothers of children with ASD
reported more stress than the other groups, re-
gardless of their cultural background.
Fathers of Individuals With ASD. Research
pertaining to the impact on fathers of having a
child with disabilities is mixed. Some researchers
have found favorable outcomes for fathers,
whereas others have reported that fathers and
mothers experience similar outcomes although
their stressors emanate from different sources
(Hastings, Kovshoff, Ward, et al., 2005). Gray
(2003) investigated gender differences in parents
of children with AS and found that fathers re-
Fall 2010
ported that their child’s condition did not have a
significant effect on them personally, whereas
mothers claimed that their child’s AS severely af-
fected their emotional well-being. There is limited
research on the stress levels of fathers who have
children with ASD. Most researchers (e.g., Her-
ring et al., 2006; Little, 2002) have reported that
fathers of individuals with ASD experience less
stress, depression, and anxiety than mothers. Pa-
ternal stress was not associated with the child’s
challenging behavior (Hastings, 2003b; Hastings,
Kovshoff, Ward, et al., 2005), but was found to
be associated with a partner’s depression (Hast-
ings, Kovshoff, Ward, et al., 2005). Sanders and
Morgan (1997) identified several factors related
to stress perceived by fathers of children with
ASD, including actual physical care of the child.
They reported that fathers of children with ASD
experience more stress as a result of time spent
caring for the child and the behavioral character-
istics of autism that might make this responsibil-
ity difficult.
T Y P I C A L LY D E V E LO P I N G S I B L I N G S
I N D I V I D U A L S W I T H ASD
The interactions between brothers and sisters pro-
vide them with opportunity to experience shar-
ing, companionship, rivalry, and other outcomes.
Researchers who study ASD do not have a clear
understanding of why some sibling pairs experi-
ence warm, supportive relationships, whereas oth-
ers experience conflict and isolation (Rivers &
Stoneman, 2003). Many individuals with ASD
have behavior repertoires that might be expected
to affect sibling relationships and the social, be-
havioral, and psychological adjustment of their
typically developing siblings. Findings regarding
the effects of having a sibling with ASD have
been mixed and inconsistent (Macks & Reeve,
2007; Mascha & Boucher, 2006; Verte, Roeyers,
& Buysse, 2003). Some researchers (e.g., Hast-
ings, 2003a; Ross & Cuskelly, 2006) have re-
ported negative outcomes (e.g., loneliness,
behavioral difficulties, depression) for the typi-
cally developing siblings, whereas other re-
searchers (e.g., Kaminsky & Dewey, 2002;
Mascha & Boucher, 2006) have found positive
outcomes (e.g., less conflict within the relation-
ship, high self-esteem and self-concept) or no evi-
Exceptional Children
dence of negative effects (Hastings, 2003c;
Orsmond & Seltzer, 2007). Orsmond and Seltzer
investigated adult siblings of individuals with
ASD and DS and found that typically developing
adult siblings of individuals with ASD reported
significantly less contact and less positive effect in
the relationship with their sibling with ASD than
did the DS group. Pilowsky et al. (2004) reported
that most siblings of individuals with ASD were
well adjusted, but emphasized that the stress of
having a sibling with ASD cannot be overlooked.
Benson and Karlof (2008) recommended that
because siblings of individuals with ASD are at
“significantly heightened genetic, as well as envi-
ronmental, risk for developing ASD or a related
disorder” (p. 594), researchers should attempt to
take this genetic risk into account when assessing
adjustment. They suggested that the inconsis-
tency in reported findings on the adjustment of
siblings of individuals with ASD could be the
result of not taking into account the genetic vul-
nerability of the siblings.
Researchers have suggested that the adjust-
ment of siblings of children with ASD is depen-
OF
dent on other demographic factors. Typically
developing siblings were found to have more ad-
justment problems when they were members of
smaller families (Kaminsky & Dewey, 2002), had
a sibling with ASD with problem behavior (Ross
& Cuskelly, 2006), and/or had marital stress in
their family (Rivers & Stoneman, 2003). Re-
cently, Macks and Reeve (2007) reported that
specific demographic characteristics (i.e., being
male, coming from a family of low socioeconomic
status [SES], having only one sibling, being older
than the child with ASD) were more likely to im-
pact a sibling of a child with ASD than a sibling
of a typically developing child. Macks and Reeve
concluded that when “multiple demographic risk
factors are present, it becomes more difficult for
the non-disabled sibling to deal with the child
with autism, both emotionally and psychologi-
cally” (p. 1065).
B I D I R E C T I O N A L R E L AT I O N S H I P S
BETWEEN SUBSYSTEMS
Most of the research on families of individuals
with ASD focuses on the influence of having an
individual with ASD on family members’ stress
23
and well-being (Hastings, Kovshoff, Ward, et al.,
2005). However it is possible, even likely, that
family members’ behavior has an impact on the
individual with ASD and other subsystems within
the family. Although it would seem logical that
the effects are reciprocal (Hastings, 2007; Patter-
son & Fisher, 2002) through bidirectional or
transactional (i.e., mutual influences over time)
processes (e.g., Bell, 1968; Lerner & Spanier,
1980; Sameroff & Chandler, 1975), we found
only limited information on such effects in the
literature. Researchers have reported that parents,
especially mothers, of individuals with ASD expe-
rience high levels of stress. This stress often is as-
sociated with depression, anger, and anxiety
(Bromley et al., 2004; Higgins et al., 2005).
Parental depression could affect (a) the marital
subsystem (e.g., causing conflict between parents
and affect marital satisfaction), (b) the parental
subsystem (e.g., affecting a child’s level of stress
and behavior), and (c) the sibling subsystem and
the individual with ASD (e.g., affecting relation-
ships with the children in the family and child-
rearing practices).
The limited data available support reciprocal
influences. For example, in families who have a
member with ASD, Hastings, Kovshoff, Ward, et
al. (2005) found parental depression to be related
to the partner’s level of stress. In addition, Giallo
& Gavidia-Payne (2006) found the level of
parental stress and family functioning to be re-
lated to level of adjustment of typically develop-
ing siblings. Low marital satisfaction and conflict
within the family of individuals with ASD have
been found to affect not just the parental relation-
ships, but also sibling relationships. Rivers and
Stoneman (2003) found that when marital stress
was higher, typically developing siblings reported
less satisfaction with their sibling relationships,
and directed more negative behaviors and fewer
positive behaviors to their siblings with ASD.
Lecavalier et al. (2006) found that child behavior
problems and parental stress exacerbated each
other over a period of 1 year, supporting a trans-
actional model of influence rather than simple
unidirectional influences.
24
COPING AND SUPPORT
STRATEGIES
Despite experiencing high levels of stress, many
families of individuals with ASD cope successfully
with their unique situation (Bayat, 2007; Gray,
2006; Twoy, Connolly, & Novak, 2007). More-
over, families that receive informal support from
their social networks and formal support from
agencies and health care providers are more likely
to show positive adjustment (e.g., Chan &
Sigafoos, 2001; Hastings & Johnson, 2001). We
define coping as strategies and actions that are
marshaled to manage a challenging situation and
support as the availability of instrumental or emo-
tional support from formal (e.g., agencies) or in-
formal (e.g., friends and relatives) sources. We
also considered both perceptions of support re-
ceived from others as well as active attempts to
seek out help and information.
C O P I N G S T R AT E G I E S
Two models of coping are described in the litera-
ture: the approach-avoidance model and the
problem-focused versus emotion-focused model.
Ebata and Moos (1994) emphasized that al-
though there are similarities between the models,
they are conceptually distinct. The approach-
avoidance model organizes coping responses ac-
cording to their focus. In approach-oriented
strategies, a person attends to a stressor by seeking
information about it, monitoring it, and trying to
resolve it, whereas in avoidance-oriented strate-
gies, a person ignores, denies, minimizes, or
diverts attention away from the stressor. The
problem- versus emotion-focused model organizes
coping responses according to their hypothesized
function. In problem-focused strategies, a person
attempts to solve a problem or change the situa-
tion, whereas in emotion-focused strategies a per-
son attempts to manage or regulate emotional
states produced by the stressor (Ebata & Moos,
1994; Roth & Cohen, 1986).
Researchers (Ebata & Moos, 1994; Twoy et
al., 2007) reported that the use of approach and
problem-focused strategies have been associated
with better adjustment, whereas the use of avoid-
ance or emotion-focused strategies have been
found to be associated with poorer outcomes.
This is not to say that avoidance or emotion-focus
Fall 2010
strategies are not adaptive. Ebata and Moos were
careful to point out that these strategies may be
adaptive in certain situations or at certain stages
of a coping process, but that reliance on avoid-
ance or emotion-focused strategies in the absence
of approach or problem-focused strategies may be
maladaptive in the long run. Using ethnographic
methods, Gray (2006) investigated the coping
strategies used by parents of individuals with ASD
over a period of 8 to 10 years and found that the
coping strategies used by the parents changed
over time. The total number of coping strategies
reported by parents declined and there was a shift
away from problem-focused coping strategies to-
ward emotion-focused strategies. At the begin-
ning of the study parents coped by relying on
service providers and family support, whereas to-
ward the end of the study, more parents coped by
invoking their religious faith or other emotion-fo-
cused strategies as they adapted to circumstances
that would not change.
Successful adaptation to stressful events re-
quires both strategies that come from within the
family (e.g., cognitive and communication strate-
gies) and external supports that emanate from re-
sources outside the family (e.g., support from
social networks; Twoy et al., 2007). Twoy et al.
(2007) investigated the resiliency and coping
strategies of parents with children with ASD and
found that the level of adaptation and use of cop-
ing strategies were similar to parents of typically
developing children. Parents of children with
ASD used reframing (i.e., redefining stressful
events in order to make them more manageable),
considered by Ebata and Moos (1994) as an ap-
proach-oriented strategy that is emotion-focused,
and social support (i.e., actively recruiting sup-
port from family and friends) as the most fre-
quent coping strategies (Luther, Canham, &
Cureton, 2005; Tunali & Power, 2002; Twoy et
al., 2007).
Bayat (2007) found that “a considerable
number of families of children with autism dis-
play resilience—reporting having become
stronger as a result of a disability in the family”
(p. 702). Bayat identified four categories of re-
silience in families with children who have ASD:
(a) pulling together resources and being con-
nected, (b) making meaning out of adversity, (c)
affirming strength and becoming more compas-
Exceptional Children
sionate, and (d) possessing a spiritual experience
and belief system.
As previously discussed, negative, passive, or
escape-avoidance coping strategies are those that
increase levels of stress or detract from overall
quality of life. Unfortunately, parents and families
of children with ASD often employ these strate-
gies (Twoy et al., 2007). Hastings, Kovshoff,
Brown, et al. (2005) found that avoidance coping
strategies used by mothers and fathers of children
with autism were associated with higher levels of
stress and more mental health problems than al-
ternative strategies employed by those parents.
Tarakeshwar and Pargament (2001) reported that
use of negative religious coping (e.g., passive wait-
ing for God to solve the problem) by parents of
children with ASD was associated with increases
in depressive affect, poor religious outcome, and
greater anxiety. Similarly, Dunn et al. (2001) dis-
covered that parents who used escape-avoidance
methods such as (a) ignoring or trying to forget
relevant issues, (b) taking drugs, or (c) hoping for
miracles had higher levels of depression, isolation,
and increased marital strain. The authors also
touted the importance of using a variety of coping
strategies, explaining that those who did not do
this encountered more negative outcomes as mea-
sured by a self-reported questionnaire (i.e., the
Parenting Stress Index). Finally, Sivberg (2002)
found that parents of children with autism used
more distancing and escape strategies than parents
of typically developing children.
The literature reveals that parents and fami-
lies who use a variety of active coping strategies
not only experience decreased levels of stress, but
also enjoy the benefit of increased family cohe-
siveness. For example, Hastings, Kovshoff,
Brown, et al. (2005) reported that positive fram-
ing can be a vital means with which individuals
revise their understanding of a particularly stress-
ful life event or situation and begin to adapt to it.
They found that both mothers and fathers of chil-
dren with ASD who committed to such strategies
had lower levels of depression than those who re-
sorted to other methods. Finally, Jones and Passey
(2004) found that the use of active coping strate-
gies, such as remaining optimistic and maintain-
ing family integration by parents of children with
DD (30% with autism) and behavior problems,
reduced their level of stress. Parents who valued
25
social support and had support services and fam-
ily support had lower levels of stress. The authors
(Jones & Passey, 2004) reported that parents who
used active coping strategies found their experi-
ence to be more rewarding and satisfying with less
concern about their child’s future.
Parents and families who use a variety of
active coping strategies not only experience
decreased levels of stress, but also enjoy the
benefit of increased family cohesiveness.
SUPPORT
Mackintosh, Myers, and Goin-Kochel (2006)
reported that the most frequent source of both in-
formation and support cited by parents of chil-
dren with ASD was other parents of children with
ASD. Parents from low-income backgrounds were
found to use less information and fewer support
sources than middle and upper-income families.
Although the data from this study are informa-
tive, they do not provide a perspective on how
satisfied parents were with their sources of infor-
mation and support. Tobing and Glenwick
(2006) reported that satisfaction with social sup-
port and not the number of supports was associ-
ated with lower levels of psychological distress of
mothers of children with ASD. Thomas, Ellis,
McLaurin, Daniels, and Morrissey (2007) used a
survey to assess access to autism-related services.
They found that families used a broad array of
services, but that access to care was limited for
minority families, families with low levels of edu-
cation, families who did not use major treatment
approaches (e.g., applied behavior analysis [ABA],
Treatment and Education of Autistic and related
Communication-handicapped CHildren), and
families living in nonmetropolitan areas. They
also found differences in service use by age group
and diagnosis of the child with ASD. We identi-
fied three primary support strategies in the litera-
ture: social support, respite care, and formal
supports.
Social Support. “Social support refers to a
source of comfort found within group and indi-
vidual relationships” (Turnbull et al., 2006, p.
213). Social support includes support from one’s
26
spouse, family and friends, availability of leisure
time to participate in recreational activities, and
availability of services and community programs
for family members (Siklos & Kerns, 2006). So-
cial and emotional supports were found to reduce
parents stress and improve their well-being (Crnic
& Low, 2002; Siklos & Kerns, 2006; Turnbull et
al., 2006). Benson (2006) found that informal
parent support (e.g., help from family and
friends) significantly decreased depression among
parents of children with ASD. Crnic and Low
emphasized that, in general, parents’ social sup-
port networks play an important role in affecting
parental stress. Weiss (2002) reported that both
social support and individual characteristics (e.g.,
self-efficacy and perception of control) were
found to aid effective coping and reduce negative
effects of stress.
One method found beneficial for parents and
families of individuals with ASD involves the re-
liance on an extensive, supportive social network
(Dunn et al., 2001). These authors reported that
accessibility to and use of social support could
lead to reductions in stress, depression, and anxi-
ety for mothers of children with autism as well as
increased life satisfaction for both parents. The
latter benefit might emanate from the intermari-
tal support system and its overall positive impact
on the family’s ability to adapt.
Boyd (2002) found spouses provided the best
informal source of support by providing respite
time, dividing the responsibilities of household
management, and sharing the role of disciplinar-
ian. Additionally, Dunn et al. (2001) found that
support within the marriage correlated with
adaptability in families of boys with developmen-
tal disabilities and with increased overall life satis-
faction for parents of children with autism.
Respite Care. Respite care, a second type of
support, refers to a service whereby another adult
assumes the role of the parent for children with
disabilities for short periods of time on a consis-
tent basis (Chan & Sigafoos, 2001). Cowen and
Reed (2002) expanded the definition to include
additional supports and services for the child and
the family, such as referrals for other types of as-
sistance.
Chan and Sigafoos (2001) reviewed studies
that evaluated the effect of respite care services
used by families of children with DD and con-
Fall 2010
cluded that, at least in the short term, respite care
can reduce the levels of stress in parents of chil-
dren with disabilities. They also reported that
families who used respite services had decreased
levels of stress and were better able to cope with
caring for a child with disabilities, relative to
those who did not utilize respite care. Mullins,
Aniol, Boyd, Page, and Chaney (2002) examined
the effects of short-term (3–7 days) respite care
on both psychological distress and levels of stress
for parents of children with DD. They concluded
that parents who received respite services showed
(a) decreased levels of psychological distress that
were maintained over time and (b) decreased lev-
els of stress. Although the latter finding was not
maintained over time, the authors suggested that
parents could benefit from the positive, short-
term effects of this service as it relates to day-to-
day functioning and a general sense of being
overwhelmed.
Although there is limited information about
the effects of respite care on families of children
with ASD, Sanders and Morgan (1997) found
that mothers and fathers of children with autism
had higher levels of stress related to family prob-
lems (i.e., time demands and family opportuni-
ties) than did other groups, and they reported
feeling least able to access recreation and leisure
services because of the demands related to having
a child with autism. The use of respite care allows
parents to engage in these activities, which, as the
authors suggested, may reduce stress and provide
them with time for personal development.
Formal Supports. A third type of support
available to parents and families of children with
ASD is access to formal support services, such as
support groups, health and professional services,
and counseling. Siklos and Kerns (2006) found
that parents of children with ASD reported that
the professionals who provided services to them
and their families were more important than
many other types of support, including friendship
opportunities for their children. Parents of chil-
dren with ASD reported the desire for informa-
tion and knowledge to help them understand
autism in general and their children’s needs specif-
ically (Whitaker, 2002). This speaks to the critical
nature of a variety of professional supports for
this population.
Exceptional Children
Of the services reflected in the literature,
there is a specific trend focusing on family well-
being including opportunities for counseling,
financial planning, and support groups. These in-
strumental supports are aimed at the family and
not directly at the child. Sanders and Morgan
(1997) have suggested that supportive therapy
allowing parents to discuss issues and share con-
cerns, such as financial planning for the long-
term care of their child with ASD, could help
reduce parental stress and contribute to quality of
life.
The literature on formal supports encom-
passes the use of support groups for both parents
and siblings of children with ASD. Smith and
Perry (2005) examined the effectiveness of a sib-
ling support group for children with autism. They
reported that the siblings’ self-concepts and
knowledge of autism improved from the begin-
ning to the end of the support group meetings,
demonstrating success in meeting the goals of the
support group. Although these findings are
promising, it is important to note that the
research design included only pre and post mea-
sures and there was no control group, which lim-
its the potential conclusions of this study.
Mandell and Salzer (2007) examined support
groups for parents of children with ASD and
found that these groups enable contact with other
families in similar situations and may reduce
social isolation and stress and increase access to
information about appropriate and available ser-
vices. The investigators emphasized the impor-
tance of including support groups for parents of
children with ASD as part of the system of care.
Similarly, Shu and Lung (2005) recommended
that the primary caregivers of children with ASD
need access to regular support group meetings
and training services provided during these gath-
erings to cope with the unique issues they face.
Another form of formal support for family
members is parent training programs and inter-
ventions. Researchers have investigated varying
parent training models/paradigms to support
families of children with ASD (e.g., Brookman-
Frazee, 2004; Koegel, Bimbela, & Schreibman,
1996; Tonge et al., 2006). In general, these stud-
ies suggest that parent education is effective in ob-
taining positive outcomes for both parents and
children. Brookman-Frazee emphasized that
27
collaborative partnerships between parents and
professionals often are associated with positive
outcomes for both child target behaviors and
family quality of life. Parent-professional collabo-
rations are necessary, but they are not sufficient. It
is important to note that parents’ level of involve-
ment in their children’s intervention programs
could influence their well-being. Schwichtenberg
& Poehlmann (2007) reported that mothers of
children with ASD indicated fewer depressive
symptoms when their children received more
ABA hours per week. However, mothers who
spent more hours per week involved in their
child’s ABA program reported more feelings of
personal strain. Trudgeon and Carr (2007) inves-
tigated the impact of home-based behavior inter-
vention on families of children with ASD and
concluded that although parents reported both
positive and negative impacts of the program, the
sources of support obtained offset the demands of
the programs.
Access to formal supports and services is not
equally distributed across the population. Man-
dell and Salzer (2007) reported that support
groups for parents of children with ASD are un-
derutilized in communities inhabited by low SES
and African American families and that there is a
need to increase the availability to such groups in
these communities. In addition, Bromley et al.
(2004) found that mothers of children with ASD
have a significant amount of psychological distress
associated with a paucity of support when raising
their child. They reported that individuals from
areas of higher SES often have lower levels of
stress than those from rural or inner-city areas
where assistance is not as available or services can-
not be easily obtained. The relationship between
supports and SES suggests important implications
for advocating for the availability of more and
better quality of services to all parents and fami-
lies, regardless of income or circumstance.
LIMITATIONS AND
IMPLICATIONS
L I M I TAT I O N S
In our effort to review the literature on the perva-
sive impact on families of having a child with
28
autism, at least three primary limitations require
consideration: (a) the magnitude of relevant liter-
ature, (b) the wide range of demographic charac-
teristics of the participants (family members and
individuals with ASD) and the sampling proce-
dures employed, and (c) the variability in the tar-
geted outcomes and their measurement. Any
review of the literature must consider both limita-
tions of the review itself and limitations of the lit-
erature reviewed. In the case of the three
limitations we detail, the first applies to our re-
view and the remaining two apply to the studies
reviewed. We have provided detailed attention to
the themes that emerged from our review of the
available literature: (a) stress for caregivers and
siblings, (b) coping strategies used by family
members, (c) preferred methods of support, and
(d) the potential for bidirectional influence.
Although we cast a broad net when searching the
literature, we tried not to sacrifice care in locating
relevant research. However, it is inevitable when
searching for studies pertinent to marital,
parental, and sibling subsystems that we may have
overlooked important contributions to this broad
literature base. For example, we did not find in-
formation related to stress experienced by families
who have more than one child with ASD or stress
in families who employed different treatment
paradigms (to determine their differential effects).
It is possible that these areas have been investi-
gated but were not identified in our search. Fur-
ther, the literature pertinent to families of
children with autism is expanding at a rapid pace
and we were limited by having set arbitrary begin-
ning and ending dates for the review.
A second limitation pertains to the wide
range of demographic characteristics of the partic-
ipants in the studies reviewed. The wide range of
characteristics and, in some cases, the dearth of
information on demographic variables limited
generalization of the findings and distinguishing
findings by participant group and conditions
(e.g., subtype of ASD, age of participants, SES,
race). In addition, most researchers used conve-
nience sampling procedures and included data on
the participants who volunteered to participate in
the studies, which may limit the external validity
of the results and the generalizability of the find-
ings for varying participant groups.
Fall 2010
 For example, although the ages of the indi-
viduals with ASD who participated in the studies
varied between 0 to 40 years, the average age of
most participants was between 6 and 12. Age of
the child with ASD should be a primary factor
when considering the effects on families because
of the unique issues encountered by families at
various vulnerable transitions along the child’s de-
velopmental pathway. These vulnerable family-life
transitions include (a) birth and early childhood,
(b) time of diagnosis; (c) transition to elementary
school; (d) adolescence and transition to high
school; and (e) adulthood, postsecondary educa-
tion, independent living, and entering the world
of work (Turnbull et al., 2006). Research is
needed to explore stress and support over time in
families who have children with autism (Gray,
2006; Hare et al., 2004) and at specific vulnerable
times of transition. It would be useful to consider
whether particular types of services, supports, or
interventions would be more effective at (or
before) particular developmental transitions.
Other important information that could
influence the findings of the studies reviewed in-
cludes the (a) specific subtype (e.g., autism, AS,
PDD-NOS), (b) characteristics of the individuals
with ASD (e.g., communication abilities, level of
intellectual functioning, challenging behavior,
and (c) characteristics of the family members
(SES, culture, marital situation). The limited in-
formation available related to specific subtypes of
ASD and specific characteristics of the partici-
pants did not allow us to examine the findings by
participant subtype or by other conditions and
renders any effort to assess generalization of the
findings inconclusive.
A third noteworthy limitation of the litera-
ture reviewed encompasses the wide range of out-
comes targeted, the clarity of their definition, and
the restrictiveness of the measures used to docu-
ment the outcomes. The wide range of outcomes
sought and the inadequate definitions provided
limits the opportunity to compare results across
studies. Although many of the studies used self-
reports (i.e., surveys, questionnaires, checklists,
scales), it was rare to find the same survey, ques-
tionnaire, checklist, or scale across studies. By em-
ploying the same assessment instruments in
studies with common purposes, researchers invite
Exceptional Children
comparisons across studies that can facilitate
broad-scale evaluations.
The literature reviewed was replete with self-
administered, self-report measures that varied on
many dimensions; however, the studies lacked
other types of data that would make a substantive
contribution to our understanding of how fami-
lies are impacted by having a child with ASD.
The few exceptions to the almost exclusive use of
self-report measures included (a) semi-structured
interviews (e.g., Dale, Jahoda, & Knott, 2006;
Mascha & Boucher, 2006), (b) direct observation
(e.g., Brookman-Frazee, 2004; Gray, 2006), and
(c) a projective test (Duarte et al., 2005). Al-
though family members’ self-report is relevant
and valuable information in its own right, trian-
gulation achieved by combining self-reports with
interviews and observational data may reveal find-
ings that any one of these data sources alone
could not.
Throughout this literature review, stress was
a primary dependent variable in many of the
studies. Unfortunately, stress is difficult to mea-
sure and functions more like a mediator variable
than a functional outcome. If the researchers’ goal
is to identify the family outcomes associated with
or produced by having a child with ASD, they
need to employ objective outcome measures in
addition to stress to assess family functioning
such as divorce rates, parents’ time together or
with their children, siblings’ grades or friendship
networks, parental abuse of drugs, or documented
depression for any family member. In a parallel
analysis, we can assess objective outcomes associ-
ated with coping/supports such as the number of
times parents go out together monthly, weekly
recreational activities for moms and dads, or fam-
ily trips; these same positive outcomes could be
considered negative outcomes of stress if the re-
sults are poorer than a normative comparison
group. A specific variable that was assessed in
many of the studies reviewed is maternal depres-
sion. Bailey, Golden, Roberts, and Ford (2007)
reviewed the literature on depression of mothers
of children with disabilities and reported a need
to make a distinction between clinical depression
and symptoms of depression. Their distinction
may be important in understanding how a child
with a disability influences family members and
what support services families need most.
29
 The different objective measures identified
previously cannot be the entire universe of out-
comes; rather, these measures must be linked to
each family’s culture and to the traditions and ac-
tivities that are unique to that family. As difficult
a task as this may be, it is key to evaluating the
functional impact of any independent variable we
decide to examine. What family members experi-
ence and then convey in their self-reports is rele-
vant, but it does not reflect the exclusive picture
of the impact of having a child with ASD in the
family. We urge those who engage in future inves-
tigations to broaden their choice of dependent
variables to encompass objective and functional
outcomes that permit an assessment of family
functioning before, during, and after an interven-
tion program is introduced. In so doing, we be-
lieve that some hypothesized coping/support
strategies will achieve empirical support and oth-
ers will fall out of favor due to lack of evidence.
I M P L I C AT I O N S FOR RESEARCH
We have identified five promising areas for future
research on children with autism and their fami-
lies that have emerged from this review: (a) bidi-
rectional influence, (b) potential positive impact,
(c) impact on fathers and siblings, (d) severity of
autistic characteristics, and (e) rigor of extant re-
search. Perhaps the most fundamental aspect of
research on stress and individuals with autism and
their families is related to the individuals them-
selves. In our bidirectional model, the impact on
individuals with autism of mothers, fathers, and
siblings, and their unique relationships is a mean-
ingful consideration as a source of stress for that
individual. When family members are experienc-
ing various forms of discord due to having a child
with ASD, it is likely they are contributing to a
diminished quality of life for that child. Addi-
tional research on the validity of reciprocal mod-
els, and ways in which families cope with this
issue is needed to provide a deeper understanding
of the bidirectional influence of the relationship.
In addition, we found limited information on a
few of the subsystems (e.g., marital subsystem)
comprising the family system framework; addi-
tional research might illuminate the impact on
these subsystems.
30
A promising area of inquiry warranting fur-
ther investigation is the potential positive impact
of having a family member with ASD (Bayat,
2007). Although some of the research summa-
rized in this review suggested that the presence of
a child with ASD could enhance the psychologi-
cal and emotional development of typically devel-
oping siblings (e.g., Macks & Reeve, 2007), it is
not clear how these results arise. What mecha-
nisms or processes operate to produce these de-
sired outcomes? Research in this area would be
helpful in determining how parents and service
providers could facilitate these positive outcomes.
Further, some families report that having a child
with autism has enhanced particular aspects of
family functioning (e.g., Hutton & Caron, 2005).
This counter-intuitive perspective or the potential
positive influence on a family may provide fami-
lies with an optimism they had not considered.
Perry et al. (2004) reported that stress does not
necessarily produce negative outcomes for the
family unit. Researchers might explore why stress
leads to negative outcomes in some families but
not others, and what the mediating factors are for
these differential outcomes.
Although there is an extensive amount of re-
search available on mothers of children with
ASD, the impact on fathers and siblings is lim-
ited. Fathers of children with ASD may have dif-
ferent experiences and different support needs
than mothers; therefore, it important to examine
their unique response to having a child with
ASD. The extent to which fathers assume the pri-
mary caregiver role is not clear. More specifically,
it would be helpful to examine how increased
parental responsibilities such as supporting the
mother, managing financial burdens associated
with having a child with ASD, or dealing with
marital discord due to many of the factors listed
here lead to unique stressors for fathers. In con-
trast, perhaps by assuming increased parental re-
sponsibility, fathers may become more involved in
family cohesion, enhancing family resilience and
coping (Bayat, 2007).
As reported, there are mixed results on out-
comes for and adjustment of typically developing
siblings of individuals with ASD. Some siblings
appear to be positively affected (e.g., high levels of
self-concept and social competence) by having a
sibling with ASD, or at least to experience no ill
Fall 2010
effects, whereas other siblings experience negative
effects. The overall mixed findings and the find-
ings about possible negative outcomes emphasize
the need to continue research in this area. Addi-
tional and comprehensive understanding of the
experiences and perceived needs of siblings of in-
dividuals with ASD may lead to the development
of an effective support system based on these
needs.
A fourth, potentially fruitful, area of inquiry
is assessing the impact of varying levels of specific
behavioral characteristics rather than just a diag-
nostic category. Bromley et al. (2004), Hastings
(2003b), Herring et al. (2006), and Tomanik et
al. (2004) have identified children’s challenging
behavior as a factor associated with maternal
stress that leads to adverse outcomes. Similarly, we
might consider the effects on family functioning
of a child with ASD who never develops speech
or a symbolic language system or whose domi-
nant means of communication is echolalic relative
to a child with ASD who has a well-developed
repertoire of speech. These are questions that
highlight independent variables and their effects
on the plethora of dependent variables (e.g.,
stress, family cohesion, friendships) assessed in
the extant literature. In addition, researchers
might explore the impact on families of children
with different subtypes of ASD, evaluating spe-
cific effects associated with one or another sub-
type.
Finally, there is a need to enhance the rigor
and breadth of research on the impact of having a
child with autism on families. The type of
research needs to be expanded to include experi-
mental work that explores the effect of indepen-
dent variables such as the coping strategies and
supports that have been identified in the litera-
ture. The reports of the findings in the existing
literature often imply cause-and-effect relation-
ships between variables when the research
methodology cannot support such conclusions.
Exemplary research might encompass investiga-
tions of short- and long-term benefits and out-
comes of different support services (e.g., respite
care, parent training) for diverse groups of fami-
lies with children with ASD. The breadth of re-
search also might be expanded, as mentioned
previously, by moving beyond the multitude of
studies of parent and family stress associated with
Exceptional Children
having a child with autism and focusing more ef-
fort on identifying strategies/interventions that
produce measurable outcomes of enhanced family
functioning.
I M P L I C AT I O N S FOR PRACTICE
In addition to the vast array of interventions di-
rected to the individuals with ASD, this review of
literature reveals the need for interventions and
services that are directed specifically to other fam-
ily members. Professionals and service providers
should anticipate specific challenges to families
that are likely to occur during various transition
periods for the child (e.g., beginning school, ado-
lescence to adulthood) and consider targeted
types of services, supports, or interventions.
Many studies conducted prior to 2000 fo-
cused on stress in mothers of children with ASD.
In the past few years, researchers have also focused
on coping strategies adopted by and support
structures for families of children with ASD.
There is increasing evidence that many family
members of children with ASD experience high
levels of stress; our challenge now is to identify
strategies to support these families. Three topics
have emerged as critical support strategies to fos-
ter the well-being of families who have children
with ASD. These include the availability of (a)
quality care and respite services benefitting all
family members, (b) informal and formal sup-
ports for parents and siblings, and (c) educational
programs that offer parents and families’ access to
trained personnel and other services and benefits.
Perhaps the most consistent theme repre-
sented in the literature is the need for support
such as respite care. Time afforded by respite care
provides parents and siblings with much-needed
opportunity for recreation and leisure, and bene-
fits individuals with ASD by offering them new
experiences with new people and possible expo-
sure to more effective methods of service delivery.
Respite care may also enhance coping efforts of
parents by providing cognitive and emotional “re-
lief ” that may be important to sustain active cop-
ing strategies over the long term.
In addition to respite care, support groups
also have been an important source of instrumen-
tal, informational and emotional support for fam-
ily members, parents and siblings. Dale et al.
31
(2006) emphasized that “feelings of well-being
may be related to the ability to strike a balance
between retaining personal control and still feel
supported by those around them” (p. 476). Re-
searchers (e.g., Mackintosh et al. 2006) emphasize
the importance of informal support from family
members, friends, and parents of other children
with disabilities. Professionals could capitalize on
this finding by developing specific interventions
to enhance families embracing their natural sup-
ports (i.e., contacts with extended family, friends,
neighbors) and to encourage and promote parent-
to-parent communication not only in formal set-
tings such as support groups, but also informally
by meeting individually for coffee or play dates.
Parent education and training programs also
are a vehicle that may contribute to feelings of
control and support. According to Brookman-
Frazee (2004) parent education programs have
consistently mediated positive effects on a variety
of targeted behaviors and characteristics in chil-
dren. Parents of children with autism who partici-
pate in parent training experience improvement
in mental health and well-being, reduced stress,
and more time for leisure activities (Brookman-
Frazee, 2004; Tonge et al., 2006).
Support for positive outcomes from parent
intervention/training also emanate from a meta-
analysis review by Singer, Ethridge, and Aldana
(2007). These authors reviewed group interven-
tion studies (i.e., behavioral parent training, cog-
nitive behavioral training, and combined training
with other support services) for parents of chil-
dren with DD. The researchers reported multiple
benefits from these trainings, including reduction
in parental distress. The authors also reported
that the most effective interventions were those
that combined a focus on changing children’s be-
havior and parents’ well-being. Singer et al. con-
cluded that there is “evidence to support the
claim that there are established evidence-based
interventions for reducing psychological distress
at least in middle class mothers in the short term”
(p. 357). The implications of this finding are that
there is a foundation of evidence on which to
build and develop support systems for families
with children with ASD. Swenson (2005)
described needed changes in the support system
for families who have children with disabilities as
including, “a system of life-long, individual,
32
community- and family-based, flexible, person-
centered supports that recognize the individual
rights and needs of family members” (p. 366). All
of these issues point to the need for more inclu-
sive service-delivery options, more highly trained
professionals in the field, and a greater commit-
ment to a comprehensive educational system for
children and families, including increased funding
for support groups, personal-futures planning,
staffing, and respite care. Moreover, there is a spe-
cific need to increase the availability of and access
to support services for families in communities
with lower SES and minority groups (Bromley et
al., 2004; Mandell & Salzer, 2007).
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ABOUT THE AUTHORS
HEDDA MEADAN (Illinois CEC), Assistant Pro-
fessor, Department of Special Education, Illinois
State University, Normal. JAMES W. HALLE,
Professor, Department of Special Education; and
AARON T. EBATA, Associate Professor, Depart-
ment of Human & Community Development,
University of Illinois at Urbana-Champaign.
Correspondence concerning this article should be
addressed to Hedda Meadan, Department of Spe-
cial Education, Illinois State University, Normal,
IL 61790 (e-mail: hmeadan@ilstu.edu).
This article was supported, in part, by the Family
Resiliency Initiative, University of Illinois and
The Autism Program at the University of Illinois
at Urbana-Champaign.
Manuscript received January 2009; accepted
November 2009.
Fall 2010