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Parenting Stress and Closeness Mothers of Typically Developing Children and Mothers of Children With Autism

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Mothers of children diagnosed with autism (N = 104) reported higher levels of stress than mothers of typically developing children (N = 342) on 13 of 14 subscales of the Parenting Stress Index. The only scores that did not differ were from the Attachment subscale, which indicates lack of emotional closeness and rather cold patterns of parent-child interaction. Mean Child Domain subscale scores for mothers in the autism group were at the 99th percentile; mean scores on the Attachment subscale were at about the 50th percentile for both groups. Despite substantial stress, mothers of children with autism report close relationships with their children. Results substantiate the need to develop interventions to help these mothers reduce their stress.
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178
Focus on Autism and Other
Developmental Disabilities
Volume 24 Number 3
September 2009 178-187
© 2009 Hammill Institute on
Disabilities
10.1177/1088357609338715
http://focus.sagepub.com
hosted at
http://online.sagepub.com
Parenting Stress and Closeness
Mothers of Typically Developing Children
and Mothers of Children With Autism
Charles D. Hoffman
Dwight P. Sweeney
Danelle Hodge
California State University
Muriel C. Lopez-Wagner
Pitzer College
Lisa Looney
California State University
Mothers of children diagnosed with autism (N = 104) reported higher levels of stress than mothers of typically developing
children (N = 342) on 13 of 14 subscales of the Parenting Stress Index. The only scores that did not differ were from the
Attachment subscale, which indicates lack of emotional closeness and rather cold patterns of parent-child interaction. Mean
Child Domain subscale scores for mothers in the autism group were at the 99th percentile; mean scores on the Attachment
subscale were at about the 50th percentile for both groups. Despite substantial stress, mothers of children with autism report
close relationships with their children. Results substantiate the need to develop interventions to help these mothers reduce
their stress.
Keywords: autism; maternal stress; parenting; attachment
Authors’ Note: Address correspondence to Charles D. Hoffman,
PhD, Department of Psychology, 5500 University Parkway, San
Bernardino, CA 92407 (choffman@csusb.edu).
The unique challenges associated with parenting a
child with a developmental disability have been
found to be particularly stressful for parents, with these
parents reporting greater levels of stress than parents of
typically developing children (Abbeduto et al., 2004;
Baker, Blacher, Crnic, & Edelbrook, 2002; Higgins,
Bailey, & Pearce, 2005; Innocenti, Huh, & Boyce, 1992;
Perry, 2005). The characteristics of autism have been
found to be especially challenging (Hastings, 2002;
Koegel et al., 1992; Perry, Harris, & Minnes, 2005), with
parents of children with autism reporting higher levels of
stress than parents of children with Down syndrome,
developmental disabilities, or other psychiatric difficul-
ties (Bouma & Schweitzer, 1990; Duarte, Bordin, Yazigi,
& Mooney, 2005; Eisenhower, Baker, & Blacher, 2005;
Fisman, Wolf, & Noh, 1989; Kasari & Sigman, 1997;
Konstantareas, 1991; Norton & Drew, 1994). A number
of studies have suggested a relationship between the
behavior of children with autism and parents’ stress (e.g.,
Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001; Tomanik,
Harris, & Hawkins, 2004). Furthermore, symptoms asso-
ciated with the disorder, such as the children’s language
and communication difficulties, cognitive impairments,
reactivity to frustration, and repetitive, self-stimulatory
behavior (American Psychiatric Association [APA],
2000), also have been found to be related to parents’
stress (Bebko, Konstantareas, & Springer, 1987;
Donenberg & Baker, 1993; Gabriels, Cuccaro, Hill, Ivers,
& Goldson, 2005; Norton & Drew, 1994).
There is evidence of an association between the sever-
ity of behavior problems and level of parental distress for
parents of children with developmental disabilities
(Abbeduto et al., 2004; Baker et al., 2002; Hastings,
2002; Minnes et al., 1989; Perry et al., 2005). Three stud-
ies found limited evidence of a relationship between the
severity of children’s autism and parental stress (Bebko
et al., 1987; Freeman, Perry, & Factor, 1991; Konstantareas
& Homatidis, 1989). Tobing and Glenwick (2002)
attempted to address methodological restrictions of these
earlier studies and used the Childhood Autism Rating
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Hoffman et al. / Parenting Stress and Closeness 179
Scale–Parent Version (CARS-P; Bebko et al., 1987) to
examine severity of children’s symptomology. They
used the Parenting Stress Index (PSI; Abidin, 1995) as an
inclusive and widely used instrument to measure parents’
stress. They found that the severity of children’s impair-
ment was related to mothers’ stress for their pervasive
developmental disorders–not otherwise specified group
(N = 19) but not for their autism group (N = 22), although
they reported a trend in this direction for the latter group.
The limitations of the study included the small sample
examined; furthermore, the sample was obtained from a
subset of 30% of surveys returned by mothers from par-
ent organizations providing support services for children
with pervasive developmental disorders. These mothers
reported their children’s diagnosis for the study. Notably,
the CARS-P is not norm-referenced and had not been
updated to reflect the APA (2000) revisions at the time
Tobing and Glenwick conducted their study.
The present investigation addresses methodological
limitations in the literature. It is the first to compare the
stress levels reported by mothers of children with autism
by using a larger number of participants for both groups
than used in earlier studies of stress in mothers of chil-
dren with developmental disabilities. Furthermore, the
sample consisted of children independently diagnosed
with autism as a criterion for mothers’ inclusion in the
autism group. It was anticipated that mothers of children
with autism would report more stress on the Child
Domain subscales of the PSI than mothers of typically
developing children. No prediction was made for the
Parent Domain of the PSI, which assesses stress related
to parent functioning. Prior research has indicated higher
levels of stress than norms reported by Abidin (1995) for
parents of children with disabilities on Child Domain
scores but not on Parent Domain scores (see Innocenti
et al., 1992; Keller & Honig, 2004). Predictions related
to mothers’ stress also were limited to the Child Domain
of the PSI as it provides an estimate of stress resulting
from the specific needs of the child, with mothers’
reports of their child’s problematic behavioral character-
istics seen as serving as the major factors contributing to
the overall stress in the parent-child system (Abidin,
1995; see also Tobing & Glenwick, 2002). In this regard,
for the autism group, the relationship between the sever-
ity of children’s autistic symptoms and mothers’ stress
levels was examined with the expectancy that severity
would be related to PSI Child Domain stress scores.
Other methodological concerns were addressed in the
design of this investigation. For inclusion in the autism
group, in addition to mothers having a child with an
independent diagnosis of autism, their children were also
required to have a Gilliam Autism Rating Scale, Second
Edition (GARS-2) Autism Index (AI) score 85, indicat-
ing a high likelihood of the disorder (Gilliam, 2005). The
AI is a total score assessing the probability of autism,
with higher scores indicating a greater degree of severity.
This newly revised, norm-referenced measure of autism
was used to assess the severity of children’s symptoms in
this study. As in the Tobing and Glenwick (2002) study,
the PSI was used here to measure mothers’ stress.
Mothers were the focus of the present study as they tend
to have primary responsibility for child care in families
with children with developmental disabilities (e.g.,
Milgrim & Atzil, 1988) and they are the most adversely
affected by the negative impact associated with their
child’s disability (Abbeduto et al., 2004; Fisman et al.,
1989; Freeman et al., 1991).
Method
Participants and Procedures
Autism group. Participants in the autism group were
104 mothers (and their children) drawn from a larger,
ongoing program of research and evaluation based on the
model suggested by Sweeney and Hoffman (2004). The
research program is integrated with an established center-
based, supplemental behavioral intervention and parent
education program located on a university campus in
inland southern California. Parents and consumer chil-
dren attend weekly 2½-hr sessions during which children
receive one-to-one behavioral treatment while parents
attend a support group. Families typically attend the pro-
gram for 2 years. The local California State Regional
Center refers and provides funding for qualified con-
sumer children and/or adolescents with developmental
disabilities and their families who receive treatment ser-
vices at the center (California Department of Developmental
Services, 2002). Fully 161 of the 165 mothers attending
the treatment program at the time of data collection vol-
unteered to participate in the research and evaluation
program. Of these volunteers, data were analyzed for those
with children who met the indicated selection criteria,
had completed the data collection process at the time of
the study, and had met the established criteria for non-
missing data (N = 104; 65%).
All mothers of children selected for participation in
the autism group had children referred to the center with
an independent Diagnostic and Statistical Manual of
Mental Disorders (DSM-IV-TR; APA, 2000) diagnosis of
autism (provided by the referring state agency and/or
local school district). As indicated previously, each of
these children also had GARS-2 AI scores 85, with the
scores ranging from 85 to 139 (M = 102.13, SD = 12.7).
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180 Focus on Autism and Other Developmental Disabilities
For GARS-2 subscale standard scores, Stereotyped
Behavior ranged from 5 to 18 (M = 10.18, SD = 2.8)
and Social Interaction ranged from 5 to 16 (M = 9.89,
SD = 2.4); Communication subscale scores (available for
70 children in this sample) ranged from 5 to 18 (M = 11.36,
SD = 2.8). Diagnostic information, provided by the refer-
ring agency for the autism group, indicated that 48 chil-
dren had a diagnosis of autism only, 40 had a diagnosis
of autism with mental retardation, and 16 had autism
with at least one other coexisting condition.
Initial behavioral and diagnostic information regard-
ing children in the autism group was collected from the
state agency during the referral process. Additional child
and family information was obtained from parents and
existing agency records. Parents and children were
assessed in a three-phase process, with specially trained
research assistants or center staff completing the first
phase of the assessment (including the GARS-2) at the
parents’ home. During this home visit, parents were given
an intake packet containing an overview of the programs
of treatment, evaluation, and research. Informed consent
was obtained from parents at this time. The second phase
of the intake process took place at the treatment center.
During the second phase, the child was observed by the
clinical staff with the child’s parent(s) present to answer
any questions that arose from the in-home or in-center
observations. For the third phase of the assessment pro-
cess, mothers met individually with research assistants
(unassociated with the treatment program at the Center)
to complete demographic indices as well as the PSI and
other measures that were part of the ongoing research
and evaluation program. These other assessment materi-
als (presented in one of two different random orders)
included measures assessing mothers’ reports of their
children’s sleep and their own sleep problems, their well-
being, and family processes. These assessment sessions
typically lasted hrs, with the trained researcher pre-
senting all assessment materials orally to individual
mothers. To protect participant anonymity at the Center,
answer sheets were sealed in a plain envelope, identified
with a predetermined code number, and secured in
locked files.
Community group. Mothers (N = 342) were solicited
by trained research assistants from classes at two local
universities, a community college, community organiza-
tions (day care centers and churches), and a variety of
businesses, all of which were located in the same geo-
graphic area as that for the autism sample. Mothers
drawn from classes at the university and community col-
leges (39% of those in the final community group) were
provided with extra class credit for their participation.
All mothers were asked to participate in a study address-
ing sleep problems in children and their parents, parent
stress, family processes, and parent well-being. In the
cover letter for the questionnaire packet, potential volun-
teers who were mothers of boys were especially encour-
aged to participate. Participants also were told that the
information they provided would be anonymous and no
names were obtained for mothers completing the survey
instrument. A total of 425 questionnaire packets, 84% of
the total distributed, were returned; 312 (73%) of those
returned met the study’s established criteria for nonmiss-
ing data; reports on children identified by their parents as
having an exceptionality were excluded. Mothers com-
pleted the questionnaires on their own (taking approxi-
mately 45 minutes to do so) and returned them to the
researchers. All mothers in the community group com-
pleted the same assessment instruments (presented in
one of two different random orders) as mothers in the
autism group. To determine if method of administration
affected results, an additional 32 mothers, who volun-
teered to do so, were tested in one-on-one hour-long
sessions similar to those used for the autism sample.
Data from 30 interviews were used in analysis (one
mother was excluded because her child had a diagnosed
disability and another mother left prior to completing the
task). Statistical examination of the obtained scores for
these two community groups (self-report and interview
format) were compared for both demographic indicators
and on each of the scales utilized. Mean scores for these
two groups did not differ for any of the demographics
or for any of the scales completed by the mothers.
Furthermore, examination of subscale scores on both
Child and Parent Domains of the PSI indicated no differ-
ences between the means for these two groups. Thus, the
data for the groups were combined, yielding a total com-
munity group N of 342 mothers.
The methods and procedures for this investigation
were reviewed and approved for human participant pro-
tections by the campus’s Institutional Review Board.
Characteristics of groups. There were 20 female
(19.2%) and 84 (80.8%) male children in the autism
group; the community group was comprised of 136
(39.8%) female and 205 (59.9%) male children (gender
was not indicated for one child in this latter group).
Children in both groups ranged from 3 to 16 years of age.
The mean age for children in the autism group (M = 8.61,
SD = 2.77) did not differ from the mean age of children
in the community group (M = 8.03, SD = 3.61). The age
of mothers in the groups ranged from 18 to 57 for the
autism group (M = 37.52, SD = 7.63) and from 18 to 63
in the community group (M = 34.85, SD = 8.15). These
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means were found to differ significantly from one
another, independent samples t(424) = 2.89, p < .01.
Additional demographics reported for the autism and the
community groups (by percentage for each) are pre-
sented in Table 1. The obtained distributions for the four
demographic categories indicated did not differ between
the two groups.
Measures
Parenting Stress Index (Abidin, 1995). The PSI is
a standardized measure designed to evaluate stress in
parent-child systems. The PSI consists of 101 items that
parents respond to on Likert-type scales ranging from
strongly agree (1) to strongly disagree (5). The PSI
assesses two domains of stress derived from factor analy-
sis: a Child Domain, with high scores indicating that
parenting stress originates from child characteristics or
behavior problems that make caregiving difficult for the
parent, and a Parent Domain, with high scores indicating
that the source of stress emanates from some parental
functioning, including parent and family context factors
that affect a parent’s ability to function as a competent
caregiver. A total Child Domain score is calculated as the
sum of the following six subscales: Distractibility/
Hyperactivity (9 items; e.g., “My child is so active that it
exhausts me”), Adaptability (11 items; e.g., “It takes a
long time and it is very hard for my child to get used to
new things”), Reinforces Parent (6 items; e.g., “My child
rarely does things for me that make me feel good”),
Demandingness (9 items; e.g., “My child turned out to be
more of a problem than I had expected”), Mood (5 items;
e.g., “My child seems to cry or fuss more often than most
children”), and Acceptability (7 items; e.g., “My child is
not able to do as much as I expected”).
The Parent Domain is calculated as the sum of the fol-
lowing seven subscales: Competence (33 items; e.g.,
“Being a parent is harder than I thought it would be”),
Isolation (7 items; e.g., “I feel alone and without
friends”), Attachment (7 items; e.g., “It takes a long time
for parents to develop close, warm feelings for their chil-
dren”), Health (5 items; e.g., “During the past six months
I have been sicker than usual or have had more aches and
pains than I normally do”), Role Restriction (7 items;
e.g., “Most of my life is spent doing things for my
child”), Depression (9 items; e.g., “When I think about
the kind of parent I am, I often feel guilty or bad about
myself”), and Spouse Related Stress (7 items; e.g.,
“Having a child has caused more problems than I expected
in my relationship with my spouse”).
The PSI also yields a Total Stress Score that is the sum
of Child and Parent Domain scores. Abidin (1995)
reported a .90 internal consistency for both domains and
the Total Stress score. Test-retest reliability ranged from
.63 to .82 in Child Domain scores, .69 to .91 in Parent
Domain scores, and .65 to .88 in Total Stress scores. For
the present study, internal consistencies were .91 and .93
for the Child Domain scores for the autism and commu-
nity groups, respectively, and .93 on the Parent Domain
scores for both groups.
The PSI has been used in numerous studies to exam-
ine the effect of a child with a disability on parent stress
(e.g., Boyce, Behl, Mortensen, & Akers, 1991; Dumas,
Wolf, Fisman, & Culligan, 1991; Innocenti et al., 1992;
Keller & Honig, 2004; Margalit, Raviv, & Ankonina,
1992; Noh, Dumas, Wolf, & Fisman, 1989; Tobing &
Glenwick, 2002).
Gilliam Autism Rating Scale, Second Edition (Gilliam,
2005). The GARS-2, derived from the diagnostic criteria
Table 1
Demographic Information for
Autism and Community Groups (%)
Autism Community
Demographic (N = 104) (N = 342)
Child ethnicity
African American/Black 12.50 9.60
Asian/Pacific Islander 5.80 2.90
Hispanic/Latino 26.00 34.50
White/Caucasian 40.40 38.00
Mixed/Other 14.20 14.10
Information missing 1.00 1.00
Mothers’ marital status
Single 10.60 12.30
Married 69.20 70.50
Divorced 9.60 8.50
Separated 3.80 2.60
Widowed 1.00 1.20
Cohabiting 0.00 4.70
Information missing 5.80 0.30
Mothers’ education
Not high school graduate 11.60 5.00
High school graduate 14.40 10.50
Some college 28.80 27.50
AA degree 12.50 19.60
BA degree 14.40 17.00
Advanced degree 11.50 11.00
Information missing 6.70 9.40
Annual family income
Less than $24,000 17.30 11.70
$24,000 to $35,999 9.60 16.40
$36,000 to $47,999 15.40 15.50
$48,000 to $59,999 4.80 12.90
$60,000 to $71,999 8.70 14.90
Greater than $72,000 25.00 27.50
Information missing 19.20 1.00
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182 Focus on Autism and Other Developmental Disabilities
in the DSM-IV-TR (APA, 2000) and from the Autism
Society of America’s (2003) definition, is a professional
and parent report instrument to evaluate autism symp-
toms. It is used to assess children on each of three domains
associated with the disorder (Stereotyped Behavior,
Communication, and Social Interaction; M = 10 and
SD = 3 for each). The combined scores on these subscales
yield an Autism Index score (M = 100 and SD = 15),
which provides a total score assessing the probability of
autism, with higher scores indicating a greater degree of
severity. Where Communication subscale scores are not
available (N in this sample = 34 children), or when a
child is nonverbal or does not communicate in any other
way, a reliable and valid AI is obtained by computing the
sum of the standard scores of the other two subscales
available in the manual for the test. Gilliam (2005)
reported that standard scores were obtained from a nor-
mative sample of children and young adults diagnosed
with autism (N = 1,107) and that 90% obtained AI scores
85. Adequate validity and reliability were reported for
each of the test domains and the AI. The GARS
(Gilliam, 1995) was recommended for use in the diag-
nosis of autism (Filipek et al., 2000; National Research
Council, 2001). The GARS-2, used here, was revised to
reflect the most current definition of autism (APA,
2000), and the author addressed psychometric concerns
raised for the original GARS (e.g., Lecavalier, 2005;
South et al., 2002).
Results
Group differences in mothers’ stress. An independent
samples t test indicated that mothers of children with
autism reported higher levels of stress on the Child
Domain of the PSI (M = 147.9, SD = 25.7) than did
mothers of typically developing children (M = 94.79,
SD = 21.7), t(420) = 20.87, p < .001. According to values
reported by Abidin (1995), these means were at the 99th
percentile for mothers in the autism group and (approxi-
mately) at the 40th percentile for mothers in the com-
munity group. An independent samples t test conducted
to compare mean scores on the Parent Domain of the PSI
indicated that mothers in the autism group reported
higher levels of stress (M = 137.41, SD = 31.4) than did
mothers of typically developing children in the commu-
nity group (M = 118.7, SD = 29.3), t(420) = 5.62, p < .001.
Percentiles associated with these respective values, again
as compared to the norms reported by Abidin, were
(approximately) at the 75th percentile for mothers in
the autism group and the 45th percentile for mothers in
the community group.
Two 2 × 2 between-subjects, Group (autism vs. com-
munity) × Child Gender multivariate analyses of vari-
ance (MANOVAs) were carried out to examine
differences in mean scores on the six PSI Child Domain
subscales and, in the second MANOVA, on the seven
Parent Domain subscales; these subscales were treated
as the dependent measures in the respective analyses.
Furthermore, two 2 × 2 (Group × Child Gender) multi-
variate analyses of covariance (MANCOVAs), with
adjustment made for both mothers’ age (which was
significantly different for the two groups) and chil-
dren’s age (a factor found to influence PSI scores;
Abidin, 1995), were conducted for the Child and Parent
Domain subscales, respectively. The mean scores for
each of the Child and Parent Domain subscales of the
PSI for both autism and community groups are indi-
cated in Table 2, along with associated F values (and
significance levels) obtained for the differences between
the means on univariate tests. The table also indicates
(approximate) percentiles associated with the means for
each subscale, which were derived from the norms
reported by Abidin (1995).
The results of the MANOVA for the six Child Domain
subscales indicated significant differences between the
autism and community groups, Wilks’s Lambda = .46,
F(6, 436) = 85.27, p < .001. There was no effect for child
gender and no interactive effect. Univariate between-
subjects effects revealed that the means for the autism
group were significantly higher than those obtained for
the community group for each of the six Child Domain
subscales (ps < .001; see Table 2). The 2 × 2 MANCOVA
carried out on these data, with adjustments made for both
mothers’ and children’s age, obtained the same results:
Only the group effect was significant, Wilks’s Lambda =
.47, F(6, 410) = 78.05, p < .001, with F values for the
obtained differences between the groups on the subscales
each significant, as in the between effects indicated for
the MANOVA, beyond the .001 level.
The results of the MANOVA for the seven Parent
Domain subscales indicated significant differences
between the autism and community groups, Wilks’s
Lambda = .91, F(7, 435) = 6.42, p < .001. No child gender
or interactive effect was obtained. Univariate between-
subjects effects revealed that the means for the autism
group were significantly higher than those obtained for
the community group for six of the seven Parent
Domain subscales (see Table 2). Only the means obtained
for the respective groups on the Attachment subscale of
the Parent Domain were not significantly different from
one another. The 2 × 2 MANCOVA of the Parent Domain
subscale data, with adjustments made for mothers’ and
children’s age, obtained the same results as the MANOVA:
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Hoffman et al. / Parenting Stress and Closeness 183
Only the group effect was significant, Wilks’s Lambda =
.89, F(7, 409) = 7.27, p < .001. F values for the obtained
differences for groups in the univariate between-subjects
analyses on all but the Attachment subscale were sig-
nificant at the same levels as those obtained in the
MANOVA. Again, the means for the autism and com-
munity groups were not significantly different for the
Attachment subscale.
Autism and mothers’ stress. Pearson correlations
examining the relationship between the level of chil-
dren’s autism and mothers’ reports of their stress indi-
cated that GARS AI scores were related to both PSI Child
Domain (r = .33, p < .001) and Parent Domain Stress
(r = .27, p < .01). Children’s Stereotyped Behavior
scores were related to both Child and Parent Domain
Stress (r = .30, p < .01 and r = .21, p < .05, respectively),
as were children’s Social Interaction scores (r = .30, p < .01
and r = .25, p < .05). Communication scores (based on a
smaller N of 70) were not significantly related to these
PSI domain scores. Separate regression analyses indi-
cated that GARS AI contributed to the variance in the
prediction of both mothers’ Child Domain, R2 = .11,
F(1, 102) = 10.21, p < .001, and Parent Domain stress
scores, R2 = .07, F(1, 102) = 8.10, p < .01.
Mothers’ stress and Attachment subscale scores. As
mothers in the autism group report significantly higher
levels of Child Domain and Parent Domain stress than
mothers in the community group, the finding of no dif-
ference between these groups on the Attachment sub-
scale, with mean scores for both groups at about the 50
percentile compared to the norms reported by Abidin
(1995), was unexpected. Abidin reported intercorrela-
tions between the subscales on the PSI and one might
expect higher Attachment subscale scores, indicating
less closeness, particularly for mothers reporting such
very high levels of Child Domain stress.
To explore this finding further, Pearson correlations
between mothers’ PSI Child Domain and Parent Attachment
subscale scores for the community and autism groups were
carried out. Overall Child Domain scores were highly cor-
related with Attachment subscale scores for both the com-
munity (r = .60, p < .001) and the autism groups (r = .60,
p < .001). Correlations between Child Domain subscales
and Attachment subscale scores are indicated in Table 3,
along with correlations reported by Abidin (1995), which
are included for comparison purposes.
These results indicate that mothers’ reports of higher
levels of stress related to the specific domains of their
children’s difficult behavior were indeed related to
higher Parent Domain Attachment subscale scores (i.e.,
mothers’ reports of lower levels of closeness to their chil-
dren). Separate regression analyses, carried out to further
explore the relationship between Child Domain scores
and Attachment subscale scores (as the criterion measure),
Table 2
Means and Standard Deviations for Parenting Stress Index (PSI) Child
and Parent Domain Subscales for Autism and Community Groups
Autism Community
(N = 104) (N = 341)
PSI M SD Percentilea M SD Percentilea F
Child Domain
Distractibility/Hyperactivity 32.48 6.10 95 23.30 5.17 45 77.43***
Adaptability 37.65 7.85 99 22.74 6.38 40 135.32***
Reinforces Parent 13.43 4.97 87 10.10 3.57 65 21.14***
Demandingness 28.48 6.58 97 17.30 5.28 50 105.59***
Mood 13.48 4.12 95 9.49 3.12 55 40.13***
Acceptability 21.74 4.94 99 11.76 4.02 50 154.67***
Parent Domain
Competence 30.02 7.04 60 27.39 6.68 42 4.52**
Isolation 16.06 5.39 77 12.92 4.84 58 10.84***
Attachment 12.56 3.61 53 12.03 3.74 51 ns
Health 14.33 4.08 77 12.15 3.78 60 9.70**
Role Restriction 22.31 6.65 55 17.96 5.71 52 13.85***
Depression 21.65 7.17 64 18.99 6.45 45 4.53**
Spouse 20.36 6.95 74 17.27 5.96 57 7.37***
aPercentiles obtained from norms reported by Abidin (1995) are approximate.
**p < .01. ***p < .001.
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184 Focus on Autism and Other Developmental Disabilities
indicated significant relationships for both the commu-
nity, R2 = .36, F(1, 340) = 193.35, p < .001, and autism
groups, R2 = .23, F(1, 102) = 31.18, p < .001. Finally, for
the autism group, children’s AI scores were significantly
correlated with mothers’ Attachment subscale scores
(r = .21, p < .05). A hierarchical regression analysis
was conducted to explore the relationship between chil-
dren’s AI scores (entered on Step 1) and Child Domain
subscale scores (entered on Step 2) and mothers’
Attachment subscale scores. This analysis revealed that
AI scores predicted Attachment scores on Step 1, R2 = .05,
F(1, 102) = 7.69, p < .01. Child Domain stress scores con-
tributed significantly to the variance on Step 2, R2 = .21,
F(1, 102) = 38.67, p < .001, with AI no longer significant
once Child Domain scores were entered.
Discussion
Mothers of children with autism reported significantly
higher levels of stress than did mothers of typically
developing children. This difference, obtained for each of
the PSI Child subscales, was anticipated and in line with
prior related research. The levels of stress reported by
mothers in the autism group on these subscales were
extremely high, at the 99th percentile for overall Child
Domain stress based on the norms reported by Abidin
(1995). Previous studies indicated higher levels of stress
for parents of children with disabilities than the norms
reported by Abidin on the Child Domain but not on the
Parent Domain of the PSI (e.g., Keller & Honig, 2004).
Here, mothers in the autism group reported higher levels
of stress than mothers in the community group on 6 of
the 7 Parent Domain subscales. Across the 13 subscales
of the PSI, only mean scores for the Attachment subscale
of the Parent domain did not differ for these two groups.
For the autism group, the relationship obtained
between the severity of children’s autistic symptoms and
mothers’ Child Domain stress also was expected (e.g.,
Tobing & Glenwick, 2002) and supports other literature
indicating that greater levels of children’s disabilities are
associated with more parental distress (e.g., Baker et al.,
2002; Minnes et al., 1989). Here, severity of children’s
autistic symptoms was related to mothers’ Parent Domain
stress as well.
Mothers’ reports of their children’s increased prob-
lematic behavior on Child Domain subscales were
related to mothers’ reports of their closeness to their
child on the PSI Parent Domain Attachment subscale.
For mothers in both groups, the more stressful and prob-
lematic they reported their child’s behavior to be, the less
closeness they reported. For the autism group, the sever-
ity of children’s autism was related to mothers’ reports of
less closeness on the Attachment subscale. Hierarchical
regression analysis suggested that it was children’s
higher levels of problematic behavior (indicated by
Children’s Domain scores) and not the level of their
autism per se that was the major factor contributing to
mothers’ reports of less closeness to their children. This
finding may be seen as informing the obtained differ-
ences between the groups in mothers’ reports of their
stress. As indicated, parents of children with more mal-
adaptive behaviors report higher levels of distress
(Abbeduto et al., 2004), and parents of children with
developmental disabilities who evidence significant
behavior problems report levels of stress similar to those
reported by parents of children without disabilities who
evidence significant behavior disorders (Donenberg &
Baker, 1993; Dumas et al., 1991; Floyd & Gallagher,
1997). Other work has indicated that the specific type or
severity of a child’s disability is not related to parents’
reports of their stress (e.g., Keller & Honig, 2004). A rela-
tionship between level of children’s autism and mothers’
reports of their stress on the PSI was obtained here. The
design of the present study does not support further
examination of the relative contributions of children’s
autism and their problematic behavior to mothers’ stress,
and it is suggested that future research attempt to disen-
tangle these relationships.
As indicated, mothers of children with autism reported
greater stress across all of the Child Domains of the PSI
and on six of the seven Parent Domain subscales of the
PSI. Furthermore, mothers’ reports of higher levels of
Child Domain stress were related to their Attachment sub-
scale scores—that is, to their reports of less closeness to
Table 3
Correlations Between Parenting Stress Index (PSI)
Attachment and Child Domain Subscale Scores
Reported by Abidin (1995) and for Community
and Autism Groups in the Present Study
PSI Child Community Autism Abidina
Domain Subscales (N = 342) (N = 104) (N = 447)
Distractibility/ .42** .24* .26
Hyperactivity
Adaptability .45** .19b .35
Reinforces Parent .60** .55** .52
Demandingness .49** .44** .37
Mood .43** .24* .40
Acceptability .51** .52** .51
aAlthough significance levels were not reported by Abidin, for the N
examined each correlation is significant beyond the .01 level.
bp = .056.
*p < .05. **p < .01.
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Hoffman et al. / Parenting Stress and Closeness 185
their children. Although the mean Child Domain score
obtained for mothers in the autism group was at the 99th
percentile, mean scores for mothers in both groups were at
about the 50 percentile and did not differ from one another
on the Attachment subscale. According to Abidin (1995),
high scores on the Attachment subscale suggest that a par-
ent does not feel a sense of emotional closeness to his or
her child and indicates a parent’s inability to observe and
understand the child’s feeling or needs accurately. Abidin
indicated that this lack of emotional closeness may reflect
an absence of emotional bonding and a “rather cold pat-
tern of parent-child interaction” (p. 11). The finding of no
difference between the groups on the Attachment subscale
was unanticipated, and particular attention to this finding
seems warranted from a historical perspective as mothers
of children with autism were once characterized as “refrig-
erator mothers” and blamed for causing their child’s dis-
ability because of their apparently cold manner of relating
to their child (Bettelheim, 1967; Kanner, 1949).
Despite the significantly higher levels of Child Domain
stress reported by mothers of children with autism and
the concomitant correlation between mothers’ reports of
stress and less closeness to their children, mothers of
children with autism did not differ from mothers of typi-
cally developing children with regard to their reports of
their closeness to their children. Perhaps mothers of chil-
dren with the uniquely challenging characteristics of
autism and the behavioral problems associated with this
disorder, despite high levels of stress, adapt to their chil-
dren’s needs with the closeness required to enable them
to respond effectively to their children. Possibly, viewing
a child with autism as “less responsible” for his or her
problematic behavior may serve to support a mother’s
understanding of her child’s feelings or needs accurately
and provide a sense of closeness. In this regard, mothers
of children with autism may not view their children’s
behavior as “bad” but rather as attributable to their chil-
dren’s affliction (e.g., Chavira, Lopez, Blacher, & Shapiro,
2000). Similarly, they may feel partially responsible for
contributing to their children’s disorder (e.g., Affleck,
McGrade, Allen, & McQueeney, 1985; Rodrigue,
Morgan, & Geffken, 1990). Contrariwise, this latter
sense of responsibility may contribute to mothers’ feel-
ings of guilt and thereby lead them to report experienc-
ing levels of closeness that are incommensurate with the
stress they report on the other subscales. This guilt or
perhaps the sensitivity of mothers of children with
autism to the refrigerator mother myth may have affected
them, with social desirability differentially influencing
their responses to parenting items (e.g., Morsbach &
Prinz, 2006) on the Attachment subscale of the PSI (e.g.,
“I expected to have closer and warmer feelings for my
child than I do and this bothers me”). These speculations
are offered to suggest future research avenues as the
present findings with respect to “closeness” are limited,
the result of exploratory analyses of a subscale of the
PSI, an instrument designed to assess mothers’ stress.
Other measures may be used to assess mothers’ self-reports
of closeness to their child in relation to indices of their
child’s difficult behavior in future studies. Nevertheless,
these results may be contrasted with earlier notions that
blamed a mother’s supposed coldness or emotional dis-
tance for her child’s autism.
The Child Domain subscales of the PSI provide indi-
cators of children’s problematic behaviors that are stress-
ful for parents, with higher levels of these behaviors
defining increased parental stress. In addition to the role
children’s autism may have in contributing to mothers
reporting greater stress than mothers of typically devel-
oping children may be seen as reflecting the nature of
this instrument. Several of the subscales of the PSI pro-
vide for parents’ reports of children’s problem behaviors
specifically associated with autism (e.g., Abbeduto et al.,
2004) or perhaps the coexisting disorders associated with
this disorder. By way of example, as Abidin (1995) indi-
cated, high scores on the Distractibility/Hyperactivity
subscale are associated with children who display many
of the behaviors characteristic of attention-deficit/
hyperactivity disorder, and high scores on the Adaptability
subscale are associated with a child’s inability to adjust
to changes in his or her environment. Comorbid condi-
tions may contribute independently to mothers’ stress,
and previous research has not addressed this concern or
included the diagnostic specificity required to examine
these relationships and to advance the field in this regard
(see Sweeney & Hoffman, 2004). Furthermore, although
the PSI is a widely used measure of parental stress, the
present findings are limited in that they are based on
mothers’ self-reports of their children’s behavior.
Although the present findings benefit from the method-
ological approach utilized, it is suggested that future
research use other methods of assessing children’s prob-
lematic behavior and mothers’ stress and closeness,
including direct observations of children’s behavior,
parent-child interactions, and parent interviews.
The results of the present study can be interpreted to
suggest that mothers of children with autism maintain
close relationships with their children despite the stress
of the parenting challenges they face. The very high
levels of stress reported by these mothers on the Child
Domain subscales indicate the importance of effective
interventions to help them to cope successfully with the
demands of parenting a child with autism. Reducing
parental stress should contribute to improving the family
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186 Focus on Autism and Other Developmental Disabilities
climate, to parents’ ability to manage their children’s
behavior, and in turn, to improved outcomes for children
with autism and their families.
References
Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond,
G., & Murphy, M. M. (2004). Psychological well being & coping
in mothers of youths with autism, Down syndrome, or fragile X
syndrome. American Journal on Mental Retardation, 3, 237–254.
Abidin, R. R. (1995). Parenting Stress Index: Professional manual
(3rd ed.). Odessa, FL: Psychological Assessment Resources.
Affleck, G., McGrade, B. J., Allen, D. A., & McQueeney, M. (1985).
Mothers’ beliefs about behavioral causes for their developmen-
tally disabled infant’s condition: What do they signify? Journal of
Pediatric Psychology, 10, 293–303.
American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders (4th ed., Text rev.). Washington, DC:
Author.
Autism Society of America. (2003). Defining autism. Retrieved
January 15, 2005, from http://www.autism-society.org/site/PageS
erver?pagename=WhatisAutism
Baker, B. L., Blacher, J., Crnic, K. A., & Edelbrook, C. (2002).
Behavior problems and parenting stress in families of three-year-
old children with and without developmental delays. American
Journal on Mental Retardation, 107, 433–444.
Bebko, J. M., Konstantareas, M. M., & Springer, J. (1987). Parent and
professional evaluations of family stress associated with charac-
teristics of autism. Journal of Autism and Developmental
Disorders, 17, 565–576.
Bettelheim, B. (1967). The empty fortress: Infantile autism and the
birth of the self. New York: Free Press.
Bouma, R., & Schweitzer, R. (1990). The impact of chronic child-
hood illness on family stress: A comparison between autism and
cystic fibrosis. Journal of Clinical Psychology, 46, 722–730.
Boyce, G. C., Behl, D., Mortensen, L., & Akers, J. (1991). Child
characteristics, family demographics and family processes: Their
effects on the stress experienced by families of children with dis-
abilities. Counseling Psychology Quarterly, 4, 273–288.
California Department of Developmental Services. (2002).
Information about Regional Centers. Retrieved September 4,
2002, from http://www.dds.ca.gov
Chavira, V., Lopez, S. R., Blacher, J., & Shapiro, J. (2000). Latina
mothers’ attributions, emotions, and reactions to the problem
behaviors of their children with developmental disabilities.
Journal of Child Psychology and Psychiatry, 41, 245–252.
Donenberg, G., & Baker, B. L. (1993). The impact of young children
with externalizing behaviors on their families. Journal of Abnormal
Child Psychology, 21, 179–198.
Duarte, C. S., Bordin, I. A., Yazigi, L., & Mooney, J. (2005). Factors
associated with stress in mothers of children with autism. Autism:
The International Journal of Research and Practice, 9, 416–427.
Dumas, J. E., Wolf, L. C., Fisman, S. N., & Culligan, A. (1991).
Parenting stress, child behavior problems, and dysphoria in par-
ents of children with autism, Down syndrome, behavior disorders,
and normal development. Exceptionality, 2, 97–110.
Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001).
Moderators of stress in parents of children with autism. Community
Mental Health Journal, 37, 39–51.
Eisenhower, A. A., Baker, B. L., & Blacher, J. (2005). Preschool
children with intellectual disability: Syndrome specificity, behav-
iour problems, and maternal well-being. Journal of Intellectual
Disability Research, 49, 657–671.
Filipek, P. A., Accardo, P. J., Ashwal, S., Baranek, G. T., Cook, E. H., Jr.,
Dawson, G., et al. (2000). Practice parameters: Screening and diag-
nosis of autism. American Academy of Neurology, 55, 468–479.
Fisman, S. N., Wolf, L. C., & Noh, S. (1989). Marital intimacy in
parents of exceptional children. Canadian Journal of Psychiatry,
34, 519–525.
Floyd, F. J., & Gallagher, E. M. (1997). Parental stress, care demands,
and use of support services for children with disabilities and
behavior problems. Family Relations, 46, 359–371.
Freeman, N. L., Perry, A., & Factor, D. C. (1991). Child behaviours
as stressors: Replicating and extending the use of the CARS as a
measure of stress: A research note. Journal of Child Psychology
and Psychiatry and Allied Disciplines, 32, 1025–1030.
Gabriels, R. L., Cuccaro, M. L., Hill, D. E., Ivers, B. J., & Goldson,
E. (2005). Repetitive behaviors in autism: Relationships with
associated clinical features. Research in Developmental
Disabilities, 26, 169–181.
Gilliam, J. E. (1995). Gilliam Autism Rating Scale. Austin, TX:
Pro-Ed.
Gilliam, J. E. (2005). Gilliam Autism Rating Scale, second edition.
Austin, TX: Pro-Ed.
Hastings, R. P. (2002). Parental stress and behaviour problems of
children with developmental disability. Journal of Intellectual and
Developmental Disability, 27, 149–160.
Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors associ-
ated with functioning style and coping strategies of families with
a child with an autism spectrum disorder. International Journal of
Research and Practice, 9, 125–137.
Innocenti, M. S., Huh, K., & Boyce, G. C. (1992). Families of chil-
dren with disabilities: Normative data and other considerations on
parenting stress. Topics in Early Childhood Special Education, 12,
403–427.
Kanner, L. (1949). Problems of nosology and psychodynamics of
early infant autism. American Journal of Orthopsychiatry, 19,
416–426.
Kasari, C., & Sigman, M. (1997). Linking parental perceptions to
interactions in young children with autism. Journal of Autism and
Developmental Disorders, 27, 39–57.
Keller, D., & Honig, A. (2004). Maternal and paternal stress in fami-
lies with school-aged children with disabilities. American Journal
of Orthopsychiatry, 74, 337–348.
Koegel, R. L., Schreibman, L., Loos, L. M., Dirlich-Wilhelm, H.,
Dunlap, G., Robbins, F. R., et al. (1992). Consistent stress profiles
in mothers of children with autism. Journal of Autism and
Developmental Disorders, 22, 205–216.
Konstantareas, M. M. (1991). Autistic, learning disabled and delayed
children’s impact on their parents. Canadian Journal of Behavioral
Science, 23, 358–375.
Konstantareas, M. M., & Homatidis, S. (1989). Assessing child
symptom severity and stress in parents of autistic children.
Journal of Child Psychology and Psychiatry, 30, 459–470.
Lecavalier, L. (2005). An evaluation of the Gilliam Autism Rating
Scale. Journal of Autism and Developmental Disorders, 35,
795–805.
Margalit, M., Raviv, A., & Ankonina, D. B. (1992). Coping and
coherence among parents with disabled children. Journal of
Clinical Child Psychology, 21, 202–209.
at SEIR on April 3, 2015foa.sagepub.comDownloaded from
Hoffman et al. / Parenting Stress and Closeness 187
Milgrim, N. A., & Atzil, M. (1988). Parenting stress in raising autistic
children. Journal of Autism and Developmental Disorders, 18,
415–424.
Minnes, P., McShane, J., Forkes, S. Green, S., Clement, B., & Card, L.
(1989). Coping resources of parents of developmentally handicapped
children living in rural communities. Australia and New Zealand
Journal of Developmental Disabilities, 15, 109–118.
Morsbach, S. K., & Prinz, R. J. (2006). Understanding and improving
the validity of self-report of parenting. Clinical Child and Family
Psychology Review, 9, 1–19.
National Research Council. (2001). Educating children with autism.
Washington, DC: National Academic Press.
Noh, S., Dumas, J. E., Wolf, L. C., & Fisman, S. N. (1989).
Delineating sources of stress in parents of exceptional children.
Family Relations: Journal of Applied Family and Child Studies,
38, 456–461.
Norton, P., & Drew, C. (1994). Autism and potential family stressors.
American Journal of Family Therapy, 22, 67–76.
Perry, A. (2005). A model of stress in families of children with devel-
opmental disabilities: Clinical and research applications. Journal
on Developmental Disabilities, 11, 1–16.
Perry, A., Harris, K., & Minnes, P. (2005). Family environments and
family harmony: An exploration across severity, age, and type of
dd. Journal on Developmental Disabilities, 11, 17–29.
Rodrigue, J. R., Morgan, S. B., & Geffken, G. (1990). Families of
autistic children: Psychological functioning of mothers. Journal of
Clinical Child Psychology, 19, 371–379.
South, M., Williams, B. J., McMahon, W. M., Owley, T., Filipek, P. A.,
Shernoff, E., et al. (2002). Utility of the Gilliam Autism Rating
Scale in research and clinical populations. Journal of Autism and
Developmental Disorders, 32, 593–599.
Sweeney, D. P., & Hoffman, C. D. (2004). Research issues in
autism spectrum disorders. In R. B. Rutherford, M. M. Quinn, &
S. R. Mathur (Eds.), Handbook of research in emotional and
behavioral disorders, (pp. 302–317). New York: Guilford.
Tobing, L. E., & Glenwick, D. S. (2002). Relation of the Childhood
Autism Rating Scale–Parent Version to diagnosis, stress, and age.
Research in Developmental Disabilities, 23, 211–223.
Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship
between behaviours exhibited by children with autism and maternal
stress. Journal of Intellectual and Developmental Disabilities, 29,
16–26.
Charles D. Hoffman, PhD, is professor emeritus in psychol-
ogy at California State University, San Bernardino. He serves
as the director of research at the on-campus University Center
for Developmental Disabilities. His current interests include
sleep problems in children with autism, intervention efficacy,
and parent, family, and child functioning in families of chil-
dren with autism.
Dwight P. Sweeney, PhD, is a professor in educational psy-
chology and counseling at California State University, San
Bernardino. He serves as the director of the on-campus
University Center for Developmental Disabilities. His current
interests include assessment and sleep problems in children
with autism. He also is interested in intervention efficacy and
parent, family, and child functioning in families of children
with autism.
Danelle Hodge, PhD, is a lecturer in psychology at California
State University, San Bernardino. She serves as the associate
director of research at the on-campus University Center for
Developmental Disabilities. Her current interests include sleep
problems in children with autism and parent, family, and child
functioning in families of children with autism.
Muriel C. Lopez-Wagner, MA, is director of institutional
research and assessment at Pitzer College. Her current inter-
ests include her dissertation research related to intervention
efficacy and parent, family, and child functioning in families
of children with autism.
Lisa Looney, PhD, is a lecturer in psychology at California
State University, San Bernardino. Her current interests include
parent, family, and child functioning in families of children
with autism and other developmental disabilities.
at SEIR on April 3, 2015foa.sagepub.comDownloaded from
... regarding various diagnostic and screening instruments; Fombonne, 2018, p. 717). Studies currently assume a prevalence of around 1% of the population (Vllasaliu et al., 2019), conservative 2 Autism spectrum disorder (ASD) 7 estimates conclude between 0.62 -0.70% (Kamp-Becker & Bölte, 2021). People with ASD are often diagnosed late (Freitag et al., 2017) because the symptoms worsen in the absence of support or because differences between the developmental stages become more pronounced over time (e.g. ...
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Thesis
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According to numerous studies, parents to children with an autism spectrum disorder (ASD) are more affected by stress than other parents. From a transactional perspective, parental stress is caused by the demands placed on parents and the assessment of their available resources for coping with these demands. The three studies in this doctoral dissertation therefore deal with the connections between parental stress, everyday demands, and the coping resources of parents to children with ASD. The first study aimed to find out which coping resources mediate between the demands and parental stress. This was examined by means of mediation analyses using data from N = 266 parents to children with ASD. Parental self-efficacy beliefs and dysfunctional coping were found to be significant mediators. In study II, a random intercept cross-lagged panel model was used to examine how stress and perceived partnership quality of parents to children with ASD predict each other longitudinally. Data from N = 160 parents collected at three measurement points were used. The results showed a decrease in stress levels over the course of therapy, which resulted in a lower perceived partnership quality at the last measurement point. In order to find out which demands explain parental stress before and during times of crisis, data from N = 168 before and N = 105 parents to children with ASD during the COVID-19 pandemic were used in study III and simple and multiple linear regression analyses were calculated. At both time points, dealing with the child's problem behavior, cooperation with the partner and restrictions in one's personal way of life were significant predictors of stress. Prior to the time of crisis, the stigmatizing reactions of others were also found to be informative for parental stress. The results provide evidence of the connections between the three constructs and show that parental stress should not be seen in isolation from the demands and coping resources, which suggests a more holistic view in research as well as in practical work with parents to children with ASD.
... There are many factors that underlie the challenges faced by parents of autistic children [4], and previous studies have examined how both intrinsic and extrinsic factors impact these parents. Studies have shown that parents' quality of life (QoL) is impacted by level of social support [5], perception of daily hassles [6,7], parental mental health [6,8], and parenting stress [9][10][11][12][13]. More importantly, a number of clinical characteristics have been associated with poorer parental QoL in parents raising autistic children, compared to parents of children without autism [13,14]. ...
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Background:Evidence suggests that parents/carers of autistic children have lower subjective physical and mental health which in turn can affect their overall quality of life (QoL). The aim of this study was to determine the relationship between behavioural and emotional profile of autistic preschool children, parental stress, and QoL using a sociodemographic lens. Methods: A secondary analysis of the data collected from parents of autistic children from six Autism Specific Early Learning and Care Centres (ASELCCs) across six states in Australia. The standardised Quality of Life in Autism scale (QoLA) scale was used as the primary outcome to ascertain the QoL of parents/caregivers. Primary exposure included child’s autism traits as well as cognitive, adaptive, and behavioural profile measured using the Autism Diagnostic Observation Schedule-second edition (ADOS-2), Social Communication Questionnaire (SCQ), Repetitive Behaviours Scale–Revised (RBS-R), Vineland Adaptive Behaviour Scales (VABS), Child Behaviour Checklist (CBCL), and Mullen Scales of Early Learning (MSEL) whereas parental stress was assessed using Parent Stress Index-4 Short Form (PSI-4-SF). Several key child-specific (child’s age, gender, and other medical conditions) as well as parent-specific (parent’s age, multicultural status, education, occupation, and income) factors were also included. Multivariable linear regression analyses were used to determine the significant predictors associated with parental QoL whilst adjusting for key sociodemographic factors. Results: Among a sample of 518 participants, the mean (SD) QoLA Part A score was 95.9 (19.9) and mean (SD) QoLA Part B score was 69.8 (21.1). Findings of the regression analyses showed that autism traits as reported by parents (higher SCQ scores) and higher parental stress levels were negatively associated with the parental QoL (Part A) whereas high income had a positive effect on QoL. In terms of parental perceptions of children’s autism-specific difficulties (QoLA Part B), we found that higher internalising and externalising behaviours (CBCL) including repetitive behaviours (RBS-R) are more impactful. Conclusion: Findings indicate that a child’s level of autism specific traits as reported by parents have an impact on parental QoL. Hence, targeted supports in these areas for families could be expected to have benefits not only for the child’s outcomes but also for parental QoL.
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Parental practices and stress are associated with both CU and autistic traits, with parents of children with these traits facing challenges that other parents do not encounter. However, the majority of available studies focused mainly on the unique effects of CU and autistic traits with parental stress and practices without exploring their interaction. The current study examines the distinct associations and interactions between CU and autistic traits with parental practices (parental involvement, poor monitoring, inconsistent discipline, and corporal punishment), care, and distress after considering the effect of conduct problems (CPs), age and sex in a Greek-Cypriot sample ( N = 146, M age = 7.30, SD = 1.43). Hierarchical multiple regression analysis revealed that children with CU traits were more likely to experience negative parenting, while parents showed heightened levels of distress. Notably, the study found no association between CU traits and positive parental practices. Further analysis indicated no significant relation between autistic traits and interactions with the target variables, signifying that these traits are not associated with difficulties in parenting and distress. No sex differences were found in all analyses. Age was negatively significant only in relation to parental distress These findings provide valuable insights into the impact of CU traits and underscore the need for additional studies investigating the impact of autistic traits, possibly within clinical samples.
... Family members must manage the many aspects of providing care, and this is demanding, fraught with difficulties, and can affect the mental health of other family members (Bekhet et al., 2012). Parents of ASD children report high levels of parental stress, low satisfaction in their relationships, and behavior problems with their children, compared to parents whose children do not have a developmental disability (Hoffman et al., 2009). Since the needs of a child diagnosed with ASD are unique, the parent requires many more tools to adapt to the child's needs (AlHorany et al., 2013). ...
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Introduction A recent concern is the frequency with which children are classified as having autistic spectrum disorder (ASD). Parents of children with ASD report difficulties in all areas of life, including the workplace. Previous studies show psychological capital (PsyCap), defined as a combination of hope, self-efficacy, optimism and resilience, is a key factor in job satisfaction and coping in numerous areas. I examined the relations of PsyCap with job satisfaction in parents of ASD children and parents of typically developing children. Methods The study involved 141 participants, 127 women, 14 men. About half (n = 69) had a child with ASD (mean age 41.41, SD 5.79), and about half (n = 72) had a typically developing child (mean age 43.65, SD 7.29). Measurements comprised the Job Satisfaction Questionnaire and the PsyCap questionnaire (PCQ). Data were collected online. Results Positive relations between PsyCap and job satisfaction was found for both groups. Parents of children with ASD had higher levels of resilience than their comparators. With increased age, parents of children with ASD reported decreased job satisfaction; parents of typically developing children reported increased job satisfaction. Discussion The study expands the understanding of how parents of children with ASD cope at the occupational level. Their job satisfaction decreases with age. Organizations who employ parents of children with special needs in general and ASD in particular should take this into account and discuss their employees' changing needs to maximize their job satisfaction and give them room for professional development under flexible conditions.
... Based on the obtained results, we can conclude that parents of children with autism face numerous obstacles and difficulties in raising and nurturing their children, and that they experience a greater burden of parental roles, leading to higher levels of dissatisfaction. Other studies have confirmed that parenting stress is a significant predictor of reduced parenting quality, poorer parent-child relationships, and overall functioning (Hoffman et al., 2009;Lopez et al., 2008;Wiley & Renk, 2007). Total stress is a measure of the stress level experienced by a parent. ...
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Being a parent of a child who exhibits atypical developmental patterns and encounters numerous difficulties necessitates parents to assume the roles of advocates and coordinators for their child’s services, thereby limiting the scope for personal fulfillment. This research endeavors to ascertain whether disparities exist in the quality of life between parents of typically developing children and parents of children with autism. Additionally, it aims to explore parental satisfaction with parenthood and the experience of parental stress. The study encompassed a cohort of 90 families, comprising 45 families with typically developing children and 45 families with children diagnosed with autism. To facilitate data collection, a comprehensive questionnaire was devised, capturing fundamental information. Furthermore, two scales, namely the Parental Satisfaction Scale and the Parental Stress Scale, were employed to assess parental perspectives. The results, obtained through nonparametric group comparison techniques, substantiate a significantly heightened level of parental stress among parents of children with autism. Moreover, noteworthy discrepancies were observed across essential domains of parental satisfaction. An unprecedented finding arising from this investigation, not documented in extant literature, pertains to the prevalent inclination of parents whose firstborn and solitary child has autism to conceive another child, motivated by apprehensions of autism recurrence and concerns surrounding their capacity to devote sufficient attention to a child with autism.
... Parents who care for a child suffering from autism spectrum disorder (ASD) often experience higher levels of stress and poorer physical health compared to parents of children with typical development [1][2][3], parents of children diagnosed with other disorders [4,5] or compared to the general population. [6][7][8][9][10][11]. Thus, parental stress experienced by the parents with ASD child seems to pose a greater risk to the psychological state of the parents and the quality of life associated with health. ...
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