Family functioning, parenting stress and quality of life in mothers and fathers of Polish children with high functioning autism or Asperger syndrome
Family functioning, parenting stress and quality of life in mothers and fathers of Polish children with high functioning autism or Asperger syndrome
Ewa Pisula 0 1 2
Anna Porębowicz-DoÈ rsmann☯ 0 1 2
0 Faculty of Psychology, University of Warsaw , Warsaw , Poland
1 the University of Warsaw (no. BST 1777.02/2016) and a grant from the Polish National Science Center, grant number N N106 352940
2 Editor: Michel Botbol, Universite de Bretagne Occidentale , FRANCE
The aim of the study was to investigate the perception of the family functioning in parents of children with autism spectrum disorders (ASD) with normal-range intelligence and the relationships between family functioning, parenting stress and quality of life. Dyads of parents of children with ASD without intellectual disability and parents of typically developing children (controls) completed a set of self-report questionnaires. Parents of children with ASD reported lower functioning of the family as a whole and their own functioning as family members; they exhibited higher levels of parenting stress and lower quality of life. Mothers of children with ASD experienced more stress in personal domain than fathers. Relationships between family functioning, parenting stress and quality of life have been established. There were also moderate to strong correlations in mother-father dyads between their assessments of family functioning, parenting stress and QoL in social relationships and environmental domains.
Data Availability Statement: All relevant data are
within the paper and its Supporting Information
Competing interests: The authors have declared
that no competing interests exist.
Parents of children with autism spectrum disorders (ASD) face multiple challenges due to
their child's developmental difficulties [1±4]. However, although individuals with ASD
are a highly heterogeneous group, they tend to be treated ªas one homogeneous categoryº
] p. 638) in much of the research on their parents. The need to conduct studies on less
heterogeneous subgroups of families and to control for a variety of factors that shape parental
adjustment, including child and family characteristics, has been already emphasized [
Considering that in recent years the number of children with ASD with normal-range intelligence
has been growing [7±9], it seems necessary to seek a better understanding of the factors related
to the adjustment of parents of this group of children.
Parents of children with ASD without intellectual disability may experience many problems
related to child care [10±12], and can even exhibit higher levels of stress than the parents of
children with ASD and intellectual disability [13±14]. Difficulties in the adjustment of parents
of children with ASD with normal-range intelligence may be compounded by the fact that
these children rarely receive a diagnosis before the age of 4 [
], and the scope and nature of
their developmental problems often eludes precise characterizations. Parenting stress may
result from the child's social and behavioral problems, alienation and experience of bullying,
as well as deficits in planning and organizing his/her own activities and being less independent
than peers [12, 16±18]. A number of these children suffer from emotional problems,
depression and anxiety, which may also contribute to their parents' stress [18±20]. The non-obvious
character of the disorder leads to a lack of understanding for both the children's and parent's
problems, and to questioning of parental competences [
], and the challenges stemming
from child rearing can significantly affect family life and expose it to crises [
According to the ABCX model [
], one of the key variables for parental adjustment is
family functioning, counted among the resources facilitating adjustment (i.e. [23±26]). It has been
demonstrated that family cohesion and quality of marriage are related to parenting stress and
depressive symptoms in parents [
]. Family commitment, challenge, cohesion, expression
and marital support are recognized as the predictors of family quality of life . Research
findings have corroborated the relationship between the functioning level of a child with ASD
(including autism symptom severity, IQ, communication skills) and family system
characteristics and parental satisfaction with family functioning [
]. However, there have been very
few studies on the families with children with ASD without intellectual disability and
relationships between their functioning and parental adjustment. It has been found that parents of
these children experience marital difficulties, report lower satisfaction with their marriage and
exhibit poorer dyadic adjustment in comparison to parents with children without any
disability . In comparison to families of children with learning disabilities and control groups,
they perceived their family relations as less conducive to the open expression of emotions, with
lower levels of mutual support, and reported their families as more organized and with higher
system maintenance orientation [
Most studies on the relationship between family functioning and the level of adjustment
of parents raising children with ASD are conducted on mothers. Considering differences
between mothers' and fathers' levels of involvement in care tasks [
], taking parents' gender
into account when exploring variables affecting adjustment seems necessary. Mothers of
children with ASD are less satisfied with marriage and less positive about their family's adjustment
to taking care of the child than mothers of children with Down syndrome and typically
developing children, while no such differences in the case of fathers of children with autism were
]. The results of studies on parental adjustment in relation to parent's gender are
inconsistent. Some of them have shown that parenting stress is higher in mothers than in
], while other researchers have detected no such differences [
even found that fathers experienced more stress [
]. Mothers report poorer mental and
physical health, as well as other aspects of QoL [29,40±42]. In a comprehensive analysis of predictors
of stress and QoL in parents of children with ASD, McStay and colleagues [
] found no
gender differences. Similar reasults were found by Dardas and Ahmad [
] from a sample from
Arab country. It should be stressed however, that only a few studies have been focused on the
situation of mothers and fathers of children with ASD with normal-range intelligence [
and links between QoL and the functioning of the family with a child with ASD .
The current study
This study aims to investigate how Polish mothers and fathers of children with ASD without
intellectual disability perceive the functioning of their families and to explore relationships
between family functioning, parental stress and quality of life. There is no governmental
2 / 19
program of early detection, diagnosing and supporting children with ASD, currently available in
Poland. Although there is some progress in supporting children with ASD and they receive
governmental educational subsidies, families of children with ASD with normal-range intelligence
have still limited access to professional support. The diagnostic, educational and therapeutic
services are offered mostly by centers run by non-governmental organizations or by private
institutions. Due to economical discrepancies, this type of treatment is available only to a minority of
children with ASD [
]. Parents are extensively involved in arranging support for their child.
Because of the limited knowledge about autism in society at large, they often experience a lack of
understanding from others and stigmatization. This seems to be common characteristic of the
situation of parents of children with ASD in many countries. The burden of coordinating,
advocating for, and making decisions about treatment often falls on parents , which may result in
limiting their professional activity [
] and loss of family income . Parents experience
also stigmatization in relation to their child's unusual development and behavior [
Therefore, the information on parental adjustment collected in Poland may enhance general
knowledge about the situation of parents of children with ASD without intellectual disability.
In the present study family functioning will be treated as one of the resources important for
parental adjustment. It will be construed according to the Process Model of Family
]. The model takes into account both the individual functioning of each family member
and evaluation of the family as a whole. According to the authors, the key measure of family
health is its ability to successfully adjust to stress. The model has been used in studies of
families of children and adolescents with various problems [
]. By including multiple
dimensions of family functioning and placing emphasis on coping in a crisis, the model can also be
useful in studies on the adjustment of parents of children with ASD.
The measures of the adjustment will include parenting stress and quality of life. Although
these phenomena are undoubtedly interrelated, they can be analysed as distinct variables (see
for example [
]) in order to better understand the relation of each one to family functioning.
The study will involve dyads of parents raising a child together, which creates the unique
opportunity to calculate the correlations between mothers' and fathers' assessments of family
functioning, as well as the level of parenting stress and quality of life. The results will be
compared with a group of parents of typically developing children matched for family system
The following research questions and hypotheses have been put forward:
1. Do mothers and fathers of children with ASD without intellectual disability differ from
mothers and fathers of typically developing children in their assessments of family
functioning, level of parenting stress and subjective quality of life?
We expected that the assessments of family functioning and reported quality of life would
be lower in parents of children with ASD (H1), and the level of parenting stress higher
compared to parents of typically developing children (H2). We also expected that
betweengroups differences would differ depending on parents' gender (H3).
2. Does family functioning predict parenting stress and quality of life?
We expected that family functioning would predict the level of stress in parents (negative
correlations) (H4) and parental quality of life (positive relationship) (H5).
3. In terms of family functioning, parenting stress and quality of life±are there correlations
between the results of mothers and fathers within parental dyads?
As there are no clear theoretical grounds and only a handful of previous reports on the
correlations of parental assessments of family relations, no hypotheses were advanced for this
3 / 19
The study included two groups of parents (N = 202): parents of ADS children (49 mother-father
dyads) and parents of typically developing children (52 mother-father dyads). In the parents of
children with ASD group the inclusion criteria for the primary caregivers were as follows: (a)
their child had a medical diagnosis of Asperger syndrome or childhood autism according to
] criteria; (b) their child had no intellectual disability; c) their child lived at home
with them; (d) their child was between 5 and 17 years old; (e) their child attended a mainstream
or inclusive school; (f) no concomitant conditions in children with ASD; (g) no developmental
disorders or serious health problems in other children in the family; (h) the parents were
partners and living together; (i) both of them completed the questionnaires; (j) both of them were
biological parents of the child. From now on this group will be described as ASD group.
Parents of typically developing children were included in the current study if: (a) none of
their children had received a diagnosis of any developmental disorders, intellectual disability
or serious medical problems; (b) at least one of their children was living at home with them;
(c) this child was between 5 and 17 years old; (d) the parents were partners and living together;
(e) both of them completed the questionnaires; (f) both of them were biological parents of the
child. Demographic characteristics of participants are presented in Table 1.
No significant differences between groups of parents were found in most demographic
variables (parents' age, level of education, place of residence, family income, child's age and
gender). There were differences in the number of children in the family (chi2 = 15.99, df = 4,
p < .01): there were more families with children with ASD that had only one child, than in the
Measures and procedures
Instruments. The questionnaire used to measure family functioning was FAM III (Family
Assessment Measure III) [
], Polish adaptation by Beauvale, de Barbaro, Namysøowska and
]. It is a self-report instrument, based on the process model of family functioning
]. It consists of three scales: a General Scale (40 items), in which family members evaluate
the family as a system, a Dyadic Relationships Scale (28 items), in which they assess their
relationship with their partner, and a Self-Rating Scale (28 items), measuring individuals'
perceptions of their functioning in the family.
Participants respond to each statement on a four-point Likert scale (0 ±strongly agree, 1 –
agree, 2 –disagree, 3 –strongly disagree). Scores in each subscale are calculated as an arithmetic
mean. Higher scores indicate greater family dysfunction. Mean scores in each subscale fall
between 0 and 3. Lower scores in individual subscales indicate better family functioning. The
questionnaire reliability expressed as Cronbach alpha coefficients ranged from .68 (for
SelfRating Scale) to .80 (for Dyadic Relationships scale).
Parenting stress was measured using the short form of the Questionnaire of Resources and
Stress for Families with Chronically Ill or Handicapped Members (QRS±S) [
]. The Polish
version adapted by Pisula [
] was used in the present study. The instrument measures three
main areas of stress: child problems (18 items), personal problems (30 items) and family
problems (18 items). For each of the 66 items participants circle one of two responses: True/False.
Higher scores indicate higher stress. In the present study the total score (sum of points for
the whole questionnaire) and scores in the three aforementioned scales were analysed. The
reliability of the scale is satisfactory. Cronbach's alpha coefficients ranged from .70 (for Child
problems scale) to .89 (Total score).
4 / 19
The Quality of Life Questionnaire was used (WHOQoL-BREF) [
]. It consists of 24
questions to which participants respond on a five-point Likert scale. Scores reflect subjective
assessments of QoL in four domains: Physical health (7 items), Psychological (6 items), Social
relationships (3 items) and Environmental (8 items). Higher scores indicate better assessment
of QoL. Scores for individual domains are calculated as the arithmetic mean of the items
belonging to a given domain, and then the result is multiplied by four (to obtain scores
comparable with the WHOQoL full version). Polish version of the questionnaire was used [
Cronbach's alpha coefficients for individual scales in the present study ranged from .60 (for
Psychological health) to .86 (for Environmental domain).
5 / 19
Procedure. Parents of children with ASD were contacted through diagnostic and
therapeutic facilities specializing in ASD, or through psychological and pedagogical counselling
centres, schools and parent associations. The institutions were asked to disseminate
information about the study, and then those who gave consent to participate were contacted by
telephone or in person and told in detail about the purpose and nature of the study. Parents were
informed that the study was anonymous and that participants had the right to withdraw at any
time. In this group, 95 pairs of questionnaires were distributed, with the order of scales in the
sets randomized. Ten sets (10.5%) were sent by mail and 85 delivered personally. The
questionnaires for mothers and fathers were placed in separate envelopes. In the instructions,
parents were asked not to communicate with their partner while completing the
questionnaires, and to place them in separate envelopes and seal them. Fifty-one pairs of questionnaires
were returned either by mail or in person, giving a return rate of 53.7%. In most other cases
parents informed us that time constraints prevented them from taking part in the study.
Additionally, ten questionnaires were completed by mothers only, who informed us that due to
work load or unwillingness to take part in research of this kind the father would not be
participating in our project. Ultimately, 49 sets were included in statistical analyses (sets completed
by two pairs were rejected due to their children exceeding the age limit). No sets were rejected
in their entirety for incomplete data due to only very incidental gaps in information. When a
substantial amount of information was missing from a scale (more than 10% of items), the
results of that participant were ignored. This resulted in minor differences in group sizes
across various statistical analyses.
In order to recruit parents of typically developing children we contacted primary, lower
secondary and upper secondary. Seventy-one pairs of sets were distributed, five of which (7%)
were sent by mail and the rest delivered in person. Similarly, mothers and fathers from the
control group were asked to complete the questionnaires independently. The overall return
rate was 79%, for a total of 56 pairs of sets, four of which were rejected (one due to cerebral
palsy in one child and the remaining three due to the child being over 17 years of age). Again,
no pairs of sets were rejected due to incomplete data, and missing information was handled in
the same way as in the group of parents of children with ASD.
Ethics. All procedures performed in studies involving human participants were in
accordance with the ethical standards of the institutional and/or national research committee and
with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
The project has been accepted by the Ethics Committee of the Faculty of Psychology at the
University of Warsaw. According to local regulations, obtaining written consent from adult
participants in studies not involving invasive or potentially stressful/harmful procedures is not
required. Participants were informed about the voluntary nature of their participation.
Data analysis. On the basis of distribution analysis using the Kolmogorov-Smirnov test
and kurtosis and skewness values, the decision was made to use parametric statistics. The
groups of mothers and fathers of children with ASD and controls were compared using
twoway analysis of variance (the first factor ªgroupº had two levels±ASD vs Controls; the second
factor was ªparent's genderº). A correction for multiple comparisons (Sidak/Bonferonni) was
applied, and therefore in all comparisons and correlation analyses the p level was set at < .01.
In order to estimate the strength of effects partial eta squared (η2) was calculated.
Pearson's r correlation analysis was used to check correlations between assessments of
family functioning and stress and QoL, and to investigate correlations between results in
motherfather dyads. In order to estimate family functioning characteristics as a predictor of parenting
stress and QoL, the Forward Entry Selection Regression Analysis method was used. Parenting
stress (total score, child, family and personal domain) and quality of life (four domains) were
taken as the dependent variables, while family functioning scores (General Scale, Dyadic
6 / 19
Relationships Scale and Self-Rating scale total scores) served as predictors. Statistical
calculations were made using SPSS v 21.
Family functioning, parenting stress and quality of life±Groups comparisons (H1, H2, H3)
Descriptive statistics of the family functioning, parenting stress and QoL are shown in Table 2.
The results of ANOVA conducted in order to analyse the effects of parents' group and
gender on family functioning, parenting stress and QoL are presented in Table 3.
The main effects of ªgroupº were demonstrated in two of the family functioning scales.
Parents of children with ASD scored significantly higher (indicating lower family functioning)
than parents of typically developing children in General and Self-Rating scales. There were
neither main effects of ªparent's genderº nor interaction effects across all variables, and no group
differences in Dyadic Relationships Scale.
ªGroupº and ªparent's genderº interaction effect was only confirmed for parenting stress in
personal domain. Mothers of children with ASD scored higher than fathers, while no gender
differences were found in the group of parents of typically developing children.
With respect to QoL, parents of children with ASD scored lower than parents of typically
developing children in the following domains: physical, psychological and social relationships;
no differences were found in the environmental domain.
Family functioning, parenting stress and quality of life: Correlation analysis and regression analysis (H4 and H5)
In order to analyse the relationships between family functioning and adjustment measures±
parenting stress and QoL, Pearson's correlation coefficients were calculated. As gender
7 / 19
Main effect of child diagnostic group F(1.189) =
8.370; p < .01; η2 = .043
Main effect of child diagnostic group F(1.199) =
10.287; p < .01; η2 = .049
Main effect of child diagnostic group F(1,198) =
53.298; p < .001; η2 = .061
Main effect of child diagnostic group F(1.196) =
132.121; p < .001; η2 = .041
Interaction effect: parents' gender x child diagnostic
F(1.196) = 7.870; p < .01; η2 = .039
Main effect of child diagnostic group F(1.198) =
40.583; p < .001; η2 = .17
Main effect of child diagnostic group F(1.193) =
99.306; p < .001; η2 = .34
Main effect of child diagnostic group F(1.201) =
9.849; p < .01; η2 = .047
Main effect of child diagnostic group F(1.201) =
13.559; p < .001; η2 = .064
Main effect of child diagnostic group F(1.198) =
15.806; p < .001; η2 = .074
Parents of children with ASD > parents of controls
Parents of children with ASD > parents of controls
Parents of children with ASD > parents of controls
Parents of children with ASD > parents of controls
Mothers of children with ASD > fathers of children with ASD; mothers of
controls = fathers of controls
Parents of children with ASD > parents of controls
Parents of children with ASD > parents of controls
Parents of children with ASD < parents of controls
Parents of children with ASD < parents of controls
Parents of children with ASD < parents of controls
differences were only present in parenting stress, further analyses were conducted on joint
groups of parents of children with ASD and controls (Table 4).
Statistically significant correlations were present between three dimensions of family
functioning and all adjustment measures (parenting stress and QoL). The more unfavourably
parents assessed family functioning, the higher levels of parenting stress and the lower QoL
they declared. All correlations were weak or moderate, the strongest being the correlation
between the assessment of family functioning and quality of life with respect to social
relationships and psychological domains.
In order to understand whether family functioning is a predictor for parenting stress and
QoL, regression analyses on the entire sample with group differences as factor were conducted.
The results are shown in Table 5.
* All coefficients listed in the table are statistically significant at the level of p < .01
Quality of life
In the case of parenting stress, the ªgroupº factor was a predictor for all measured aspects of
stress. Overall family functioning was associated with the general stress level, as well as with
family and personal parenting stress. In addition, the Self-Rating scale score was associated
with family stress.
Overall family functioning was a predictor for the levels in all QoL domains. The Dyadic
Relationships scale score was a predictor for physical health and social relationships domains,
while the score on the Self-Rating scale±for the social relationships domain. The ªgroupº factor
was predictive of scores in the psychological and social relationships QoL domains.
Consistency of mothers' and fathers' assessments of family functioning, level of stress and quality of life (Question 3)
The present study focused on the assessment of family functioning and its relationship with
parenting stress and quality of life in parents of children with ASD without intellectual disability.
We were also looking for gender differences in experiences of parenting in this group of parents,
compared to parents of typically developing children, matched for family system characteristics.
Generally, the most striking were the differences between parents of children with ASD and
those of typically developing children in parental assessments of family functioning, parenting
stress and QoL. Additionally, there was the interaction effect in personal stress that involved
mothers of children with ASD reporting higher levels of stress than the fathers of these children,
while no differences in stress levels between mothers and fathers were found in the control
group. There were no gender differences in the assessment of family functioning and quality of
life. The consistency of assessment of family functioning, parental stress (except personal stress)
and QoL (social relationships and environmental domains) in parent dyads has been shown.
Between-groups comparisons of family functioning
As predicted, parents of children with ASD reported lower levels of family functioning than
controls. This was true for the General Scale and Self-Rating Scale, but not for the Dyadic
Relationships Scale of FAM-III.
Lower assessments of family functioning by parents of children with ASD seems to be
consistent with the results of those studies in which this group of parents reported lower family
cohesion and adaptability compared to controls [
], and their family's expressive feelings as
lower due to their child's communication difficulties [
]. It may be associated with the
additional childcare burden on parents of children with ASD and perceived insufficiency of
resources required to pay more attention to other family members and make efforts to satisfy
their needs as well as the sense of neglecting other responsibilities, such as providing
financially for the family, maintaining social relations and organising leisure and recreation [
We found no statistically significant difference between parents of children with ASD and
controls in the satisfaction with dyadic relationship quality. This result seems not to be
10 / 19
consistent with earlier reports on parents of children with autism [49,61±65]. The pressures of
raising a child with ASD can make caring for the quality of the relationship difficult and be a
source of conflict between partners [
]. This is particularly important because marital support
in this group is central to effective coping with stress [
], and affects the sense of parenting
]. When considering the results of the present study it should be noted that
differences in parental assessment of dyadic relationships emerged at the alpha level of p < .05
(when Bonferroni correction was applied, they sank below statistical significance). As such,
any interpretation of this finding must necessarily be tentative.
As far as perception of their own functioning in the family, parents of children with ASD
assessed it lower than parents of typically developing children. Less favourable perception of
themselves as family members can also result from burdens associated with childcare and a
sense of not investing enough in family relations. However, an alternative interpretation
should be mentioned here. Research on broader autism phenotype (BAP) has shown that
some parents of children with ASD exhibit characteristics typical for autism [
characteristics are milder in parents than in individuals diagnosed with ASD and often include
only some aspects of functioning, such as cognitive deficits, preference to be alone, insistence
on sameness, reluctance to change or obsessive-compulsive symptoms [
]. It is possible
some of the parents of children with ASD in the study may presented BAP traits influencing
both their functioning in the family and their assessments of family functioning. Since BAP
traits were not measured in the study, no conclusions can be drawn on these potential
relationships, but this issue should be taken into consideration in future studies.
There were no differences between mothers and fathers in the present study in terms of
total scores in the three family functioning scales. McStay et al. [
] also found no gender
differences in the parental reports of family functioning in parents of children with ASD, contrary
to the differences in the level of the adjustment of mothers and fathers. Results of our study
remain consistent with their findings, it must be noted however, that we have limited our
analyses to the three main scales of FAM-III. More detailed exploration of the results, including
subscales scores, could bring additional information in this field.
Between-groups comparisons in parenting stress and quality of life
As predicted, the parents of children with ASD scored much higher in parenting stress than
parents of typically developing children. This finding confirms previous reports [
] and is
certainly related not only to the challenges faced by the parents of children with ASD, but also
to the unsatisfactory level of support offered to individuals with ASD (including high
functioning ones) and their families. This is a common problem for many countries [45,73±75]. It
should be noted that higher stress in parents of children with ASD in the family subscale of
QRS is consistent with their less favourable assessments of family relations in FAM-III. The
results confirm that challenges resulting from the developmental problems of children with
ASD may negatively impact family life also in the case of parents of children without
We found interesting interaction effects of parent's gender and diagnostic group in the
personal parenting stress. Mothers of children with ASD scored higher than fathers, while no
gender differences were found among parents of typically developing children. These results can
be viewed as an outcome of greater involvement in childcare, education and developmental
support in mothers of children with ASD. The similar picture was previously found by Benson
et al. [
]. No significant differences between mothers and fathers were found in the other
aspects of parenting stress, which is consistent with the lack of such differences in FAM-III
11 / 19
As expected, parents of children with ASD assessed QoL in most analysed domains
(physical health, psychological and social relationships) lower than parents of typically developing
children. Lower QoL may result from the burdens and limitations experienced by parents in
connection with childcare and insufficient social support, both professional [
] and informal
]. In turn, lower assessments in the physical health domain of QoL may be associated
with specific difficulties related to taking care of a child with ASD, such as circadian cycle
disturbances and sleep deprivation that result in parental fatigue , or particularly burdensome
behavioral problems [
]. These results confirm the need of parents to receive the efficient
support in the ASD child rearing.
Similarly to other studies [
], we found no differences between the mothers and fathers
of children with ASD in any of the QoL domains. Since gender differences in this group of
parents were present in terms of personal stress, further research could investigate factors that
determine the levels of stress and the quality of life in mothers and fathers of children with
ASD without intellectual disability. Perhaps personal burdens associated with raising a child
with ASD reflected by the levels of personal stress in mothers could be explained by the way
their parental role and its associated duties are defined. In that case they could affect the levels
of parental stress in the domain of self-evaluation as parent, while being less important for the
subjective QoL in other domains. It would also be interesting to explore dispositional
correlates of subjective stress and QoL in mothers and fathers. Some relevant information was
collected previously by Yamada et al. , who reported on differences in that matter in mothers
and fathers of children with ASD, and on the effects of the husband-wife relationship on QoL
in women, though not in men.
Relationships between family functioning and measures of adjustment
Correlation analysis yielded a number of significant relationships between family functioning
and measures of parental adjustment. A positive correlation was found between assessment of
family in all aspects (General Scale, Dyadic Relationships Scale, Self-rating Scale) and QoL,
and a negative one between assessment of family and parenting stress.
In regression equations group (ASD vs control) and family functioning served as predictors
for parental adjustment. In the case of parenting stress, group was a stronger predictor than
any of the domains of family functioning. This finding is hardly surprising in the context of
between-groups comparisons which confirmed that parents of children with ASD without
intellectual disability experience much higher levels of stress than parents of typically developing
children. Nevertheless, family functioning was also related to parental stress levels. FAM-III
General Scale scores predicted both the overall stress level and the levels of stress in two
domains (family and personal). The factors ªgroupº and FAM III General Scale scores
combined accounted for over 40% of variance in scores with respect to the overall stress level and
personal stress. This finding confirms the importance of family relations for the level of stress
experienced by parents of children with ASD without intellectual disability. Similar results were
reported by McStay and colleagues [
]. They found that a significant predictor of parenting
stress (explaining 8% in mothers and 5% in fathers) is family sense of coherence, and there was
a correlation-level relationship between marital support and parenting stress in mothers. Jones
and Passey [
] also demonstrated that integration and cooperation in the family explained the
greatest portion of variance in parenting stress in parents of children with ASD (15%).
Family functioning measured in FAM III General Scale was also associated with all QoL
domains. The result in Dyadic Relationships was predictive of quality of life in physical health
and social relationships; in addition, Self-Rating was a predictor for social-relationships. These
findings should be taken into account when designing support for the families of children with
12 / 19
ASD, e.g. by providing families with opportunities to spend time or engage in leisure activities
It should be noted, however, that the relationships analysed in this paper are likely to be
more complex than it appears from our results. Family functioning may be affected by a child's
developmental disorder, but it can also have an impact on how the child develops [81±83].
Kelly and colleagues [
] showed that in children with Asperger's syndrome the quality of
family relationships (in particular conflict in the family) is predicative of depressive and anxiety
symptoms. Presumably, increased levels of depression and anxiety in the child may, in turn,
affect family relations by increasing tension, consequently resulting in a greater number of
conflicts. This type of circular relationship is difficult to identify in correlational and cross-sectional
studies. The focus in this study was on the relationships between family functioning and
parental adjustment, with the former treated as a predictor of parental stress and QoL. However,
family functioning may be treated not as a predictor but as a measure of family adjustment. This is
how some researchers have approached relationship quality [
], family quality of life [
marriage quality [
]. Thus, we can assume that the results of this study suggest a presence of
relationhips between family functioning and parental stress and QoL in the group of parents of
children with ASD without intellectual disability, but caution is highly recommended when
drawing conclusions on the direction of the causal relationships between these variables.
Correlations in partner dyad assessments
The last issue analysed in this study was consistency of assessment within parent dyads. It was
shown that parents of children with ASD rated the functioning of their families similarly, with
Pearson's r for total scores ranging from .626 (Self-Rating Scale) to .753 (Dyadic Relationships
Scale). This result is consistent with findings reported by Altiere and von Kluge [
], in which
mothers and fathers of children with ASD assessed the cohesion and adjustment of their
families similarly. The correlations in assessments of family by parents of typically developing
children were also significant, although weaker (from .338 for Self-Rating Scale to .470 for Dyadic
The scores of mothers and fathers of children with ASD also correlated in parenting stress
(excepting the personal domain). The absence of significant correlations in the personal
domain suggests differences in the way mothers and fathers experience the personal costs of
childcare. It is worth remembering here that with respect to this aspect of parental stress, in
the group of parents of children with ASD mothers scored higher than fathers, while no gender
differences were observed in controls. The underlying causal factor may be that mothers are
more likely to give up their careers and individual development to become the primary carer
of their child with ASD [
In terms of QoL, the assessments of mothers and fathers in the two groups were correlated
in two domains: social relationships and environmental (moderate correlations). As in
previous studies [
], partners' assessments were not found to be correlated in QoL relating to
the physical health and psychological domains. A similar pattern of QoL scores emerged in the
group of parents of typically developing children. It seems therefore, that there is no need to
analyse it as a function of the specificity of parents of children with ASD.
Implications and limitations
The study design puts limitations on our ability to make cause-and-effect conclusions
regarding the relationships between analysed variables. In contrast, longitudinal studies would enable
us to trace the dynamics of changes in the family system and their consequences for the
family members' adjustment. Furthermore, for the sake of clarity we have not analysed the
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relationships between parenting stress and QoL, even though they too are interesting and have
been previously explored [
Some variables that were not accounted for in the study may significantly affect parental
adjustment, such as severity of child's behavioral problems, as well as the pile-up of demands
not related to childcare. Moreover, the questionnaires were completed by partners raising
children together. This approach has its advantages (more information about correlations inside
the family), but is not free of limitations. Participation of parent dyads exclusively precludes
generalization of results to single parents, who make up a sizeable group in the case of raising
children with ASD [
]. Future studies could benefit from including the perspectives of other
family members, in particular healthy siblings. In addition, the study only enrolled parents of
children with ASD within intellectual norms. This means that the results may not be valid for
parents of children with autism and intellectual disability [
]. The majority in the study were
parents with secondary or higher education. This also limits the possibility of generalization. It
should also be noted that only about 54% of parent dyads that originally declared willingness
to fill in the questionnaires actually took part in the study. In most cases parents explained
their withdrawal from the project by time constraints and this was especially true of fathers.
Other researchers have mentioned the need for a better understanding of fathers' experiences
associated with raising a child with ASD [
] and poor submission rates in fathers in the
present study may support this view. It should be mentioned that submission levels around 50%
have been reported in others studies on QoL in parents of children with ASD [
]. In the
present study only sets completed by pairs of parents were included in the analysis; those
completed by mothers only were excluded. The collection of full sets of instruments completed
both parents presented a great challenge, increasing the percentage of attrition and
complicating potential generalization of results.
Moreover, establishing contact with a significant proportion of parents through therapy
and support centres for children with ASD probably skewed the composition of the group
towards greater participation of individuals benefiting from professional support than in the
general population of these families. Finally, the relatively small groups of parents in the study
constitute another of its limitations.
Limitations notwithstanding, the study generated information that expands our knowledge
of the functioning of families of children with ASD with normal-range intelligence and
relationships between that functioning and measures of parental adjustment. This may lead to a
better understanding of the conditions prevailing in the families in which these children
develop. There is no doubt, however, that many questions in this area remain unanswered.
They relate to factors affecting the functioning of families of individuals with ASD without
intellectual disability, including social attitudes to people with autism, relationships between
parents' BAP traits and family functioning, as well as possible differences in the functioning of
family systems with children with ASD with or without intellectual disability in the child.
S1 Material. Row data of all analyzed variables.
The authors would like to thank the families who participated in the study. They also thank
Synapsis Foundation and Stowarzyszenie ªNiegrzeczne dzieciº for their assistance with data
14 / 19
Conceptualization: Ewa Pisula, Anna Porębowicz-DoÈrsmann.
Formal analysis: Ewa Pisula, Anna Porębowicz-DoÈrsmann.
Funding acquisition: Ewa Pisula.
Investigation: Ewa Pisula, Anna Porębowicz-DoÈrsmann.
Methodology: Ewa Pisula, Anna Porębowicz-DoÈrsmann.
Project administration: Ewa Pisula, Anna Porębowicz-DoÈrsmann.
Supervision: Ewa Pisula.
Writing ± original draft: Ewa Pisula, Anna Porębowicz-DoÈrsmann.
Writing ± review & editing: Ewa Pisula.
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