583191

research-article2015
AUT0010.1177/1362361315583191AutismPozo and Sarriá

Special Issue Article

Autism

Still stressed but feeling better: Well-being 2015, Vol. 19(7) 805­–813
© The Author(s) 2015
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DOI: 10.1177/1362361315583191

children become adults aut.sagepub.com

Pilar Pozo and Encarnación Sarriá

Abstract
The transition to adulthood and adulthood itself have been identified as times of stress for parents of individuals with
autism spectrum disorder. Longitudinal studies, however, show improvements in the well-being of mothers of adolescents
and young adults with autism spectrum disorder. This article presents a cross-sectional study of 102 Spanish parents
(51 mothers and 51 fathers) of 102 individuals with autism spectrum disorder. The aim was to examine parental well-
being (evaluated based on stress, anxiety, depression and psychological well-being) in three groups of parents of adults,
adolescents and young children with autism spectrum disorder. In addition, the relationships between parental well-being
and the characteristics of their children, social support, parental age and sense of coherence were analysed. The results
showed that although parental stress and psychological well-being levels were similar across the groups, depression
and anxiety were lower in parents of adolescents or adults compared with parents of young children. Different factors
predicted different measures of parental well-being, but sense of coherence emerged as the main predictive factor for
all parental well-being measures. These findings are discussed in relation to parental adaptation over the lifespan and the
implications for interventions in autism spectrum disorder families.

Keywords
anxiety, autism spectrum disorders, behaviour problems, cross-sectional study, depression, parental adaptation,
psychological well-being, stress, sense of coherence

Parents of individuals with autism spectrum disorder
(ASD) face multiple challenges and demands that can
compromise their well-being. In particular, they experi-
ence higher levels of stress, anxiety and depression than
parents of typically developing children or children with
other disabilities (Baker-Ericzén et al., 2005; Bitsika and
Sharpley, 2004; Carter et al., 2009; Hastings and Brown,
2002; Olsson and Hwang, 2001; Pisula, 2007). Severity of
autism and behavioural problems in children are strong
predictors of stress and emotional distress in mothers of
children with ASD (Abbeduto et al., 2004; Ekas and
Whitman, 2010; Feldman et al., 2000; Hastings, 2003;
Hayes and Watson, 2013; Herring et al., 2006; Tomanik
et al., 2004). Moreover, although the severity of autism
symptoms and behaviour problems tends to decrease with
age (Esbensen et al., 2009; Mawhood et al., 2000; Shattuck
et al., 2007), these characteristics continue to present limi-
tations in the lives of individuals with ASD and to affect
the well-being of their parents (Blacher and McIntyre,
2006; Lounds et al., 2007).
However, child characteristics of ASD children are not
the only variables that influence the well-being of parents;
social support and psychological factors – such as coping
strategies and the perception of the situation – also affect
parental adaptation (Bristol, 1987; McStay et al., 2014;
Pakenham et al., 2005; Pozo et al., 2014; Pozo and Sarriá,
2014a).
In relation to social support, a larger social network is
associated with improved maternal well-being from child-
hood to adulthood (Dyson, 1997; Sharpley et al., 1997;
Smith et al., 2012b). Nevertheless, in the transition from
junior to high school there is a significant reduction in the
formal support available for families (Shattuck et al.,
2011); informal support, too, declines over time (Gray,
2006; Pozo and Sarriá, 2014b). Multiple changes in the
social context of ASD families and in parental roles
are required in order to accommodate the challenges of
National University for Distance Education (UNED), Spain
Corresponding author:
Encarnación Sarriá, Facultad de Psicología, National University for
Distance Education (UNED), C/ Juan del Rosal 10, Madrid 28040, Spain.
Email: esarria@psi.uned.es
806 Autism 19(7)
adolescence or adulthood, and thus the transition to adult-
hood and adulthood itself are also times of stress for ASD
families (Smith et al., 2010, 2012a).
Various psychological factors, such as self-efficacy
(Giallo et al., 2013; Hastings and Brown, 2002), hardiness
(Ben-Zur et al., 2005) and sense of coherence (SOC) (Mak
et al., 2007; Oelofsen and Richardson, 2006; Olsson and
Hwang, 2002; Pozo and Sarriá, 2014b), have also been
associated with parental well-being. In particular, the con-
struct of ‘SOC’ consistently appears to be a strong predic-
tor of well-being and a protective factor against stress,
which reduces the impact of the disability on the family.
This finding suggests that it is important to consider SOC
as a psychological factor in analysing the adaptation of
parents of individuals with ASD across the lifespan.
The construct of SOC has been defined as a global ori-
entation, an enduring attitude and a feeling of confidence
that one’s own life events are comprehensible, meaningful
and worthy of engagement and that one has the resources
to cope with the demands of these events (Antonovsky,
1979, 1987). SOC may act as a general form of resilience
to stress as well as a precursor in setting other cognitive
processes in motion specific to the situation. SOC assesses
how people view life and address stressful situations. It
has three components: comprehensibility (a cognitive
component that refers to the extent to which a person per-
ceives a situation as ordered, consistent, structured and
clear rather than as chaotic, unpredictable or inexplicable),
manageability (an instrumental component that refers to
the perception that one has adequate resources to meet the
demands posed by the environment) and meaningfulness
(an emotional component that refers to the subjective feel-
ing that life makes sense and that some parts of one’s life
are worthy of commitment and engagement).
Longitudinal studies have shown that parental percep-
tion of the situation improves as their children with disa-
bilities grow up (Bayat, 2007; Trute et al., 2007). Parents
report that the initial experience of frustration evolves into
personal growth and a new meaning of life (Kausar et al.,
2003). Meanwhile, cumulative parenting experience can
improve parents’ coping resources and adaptation skills
and can therefore improve their sense of well-being (Ha
et al., 2008). Parental maturation can have a positive influ-
ence on the sense of well-being (Charles and Piazza,
2009), and emotional well-being also improves with age as
a result of the maturation of regulation strategies (Jorm
et al., 2005). In the mid-life stage, parents of adolescents
or young adults with ASD may have developed more
mature emotional strategies to cope with their situation
and may therefore experience an improvement in well-
being or at least a decrease in emotional distress. A short-
term longitudinal study with middle-aged mothers of ASD
adolescents showed a decrease in maternal anxiety over a
period of 1.5 years, although there was no change in
depressive symptoms (Lounds et al., 2007). A longitudinal
study by Barker et al. (2011), following the trajectories of
emotional well-being of mothers of adolescents and adults
with autism over 10 years, also found that anxiety improved
while depressive symptoms remained stable over time.
The apparently contradictory findings of pervasive
stress in mothers of adolescents and adults with ASD and
decreases in maternal emotional distress (anxiety) over
time are actually not incompatible. In a population based
investigation, Totsika et al. (2011) assessed both positive
and negative mental health. They reported that although
mothers of children with ASD had a greater incidence of
emotional disorders compared with mothers of typically
developing children or children with intellectual disabili-
ties, there were no differences with respect to positive
mental health. As Hastings and Taunt (2002) concluded,
positive perceptions and experiences may occur in concert
with negative or stressful experiences in families with chil-
dren with disabilities.
Taken together, these findings suggest that it is neces-
sary to examine the changes that occur in parental adapta-
tion across the lifespan by considering both negative and
positive variables of adaptation and analysing multiple
related factors. We present a cross-sectional study of
Spanish parents of individuals with ASD. Differences in
stress, emotional distress (anxiety, depression) and posi-
tive well-being (psychological well-being) were examined
in three groups of parents with children at different life
stages: primary school-age, adolescents and adults. The
study also examined factors predicting well-being.
Consistent with previous research, it was expected that
the three groups would present some differences in paren-
tal well-being. More specifically, it was predicted that
anxiety would be lower and psychological well-being
would be higher in parents of adolescents and adults com-
pared with parents of primary school-age children. No dif-
ferences were predicted, however, in levels of parental
depression and stress. It was also expected that both paren-
tal and child characteristics would be predictors of parental
well-being.
Method
Participants
Participants included 102 Spanish parents (51 fathers, 51
mothers; mean age  = 
46.6  years; standard deviation
(SD) = 9.6 years, range = 30–78 years) of 102 individuals
with ASD. They were divided into three groups: 46 parents
of primary school-age children (mean age = 39.9 years;
SD = 4.4 years); 30 parents of adolescents (M = 46.3 years;
SD = 4.5 years) and 26 parents of adults (M = 59.0 years;
SD = 8.6 years) (see Table 1 for details).
The groups of parents were identical in gender (50%
fathers, 50% mothers) and were similar in education level
and family income. However, significant differences were
Pozo and Sarriá 807

Table 1.  Family demographics.

Parental variables G1: Primary (n = 46) G2: Adolescent (n = 30) G3: Adult (n = 26)

% % %
Education level
  Primary school 22 17 31
  Secondary school 26 37 27
  University grade 52 46 42
Marital status
  Married/stable couple 98 97 77
 Divorced 2 3 8
 Widowed – – 15
Employment status
 Unemployed 28 27 23
 Employed 72 70 50
 Retired – 13 27
Family
Family composition
  2 members – – 15
  3–4 members 83 73 70
  ⩾5 members 17 27 15
Monthly family income
  <€500 18 13 –
 €500–€2000 78 77 88
  >€2000 4 10 12

found in parental age (F(2, 99) = 90.43, p < 0.001), mari- Procedure

tal status (χ2(4) = 13.90, p = 0.008) and employment status
(χ2(4) = 17.94, p = 0.001), as there were higher percentages
of widowed and retired individuals among parents of
adults. Significant differences were also found in the
number of family members (χ2(8) = 17.22, p = 0.028) as
there were families with only two members among par-
ents of adults.
The individuals with ASD whose parents participated in
the study were aged between 4 and 37 years (M = 15.3 years;
SD = 8.6 years). They included 46 primary school-age chil-
dren (age 4–11 years; M = 8.0 years; SD = 1.9 years), 30 ado-
lescents (age 12–20 years; M = 15.8 years; SD = 2.8 years)
and 26 adults (age 21–37  years; M = 27.2 years;
SD = 4.7 years). All lived at home with their parents. Most
(77%) were male, and this proportion was comparable
across the three groups. Table 2 describes their ASD diagno-
ses and educational centre attended. The most frequent cat-
egory of ASD diagnosis (Diagnostic and Statistical Manual
of Mental Disorders (4th ed., text rev.; DSM-IV-TR)) across
all groups was autistic disorder. A formal diagnosis of ASD
is necessary to access autism-specific services in Spain.
Such assessment may be made by mental health profession-
als or by a team of local educational services specialised in
diagnosing ASD. In addition, independent diagnosis was
performed by the psychologist at the educational centre
using the Childhood Autism Rating Scale (CARS; Schopler
et al., 1988).
Initially, we contacted psychologists at educational centres
linked to the Professional Association of Autism in Spain,
informing them of the study. Parents then received a letter
inviting them to participate, noting that participation would
be voluntary and confidential. We relied on convenience
sampling based on schools’ and parents’ availability.
Participants completed a set of questionnaires distributed
either through the school/day centre or by email, depending
on their preference.
Measures
A brief questionnaire designed by the research team was
used to obtain demographic information. A set of seven
questionnaires was administered to evaluate the variables
studied. One of these (CARS) was completed by the psy-
chologist at the educational centre; parents completed the
other six questionnaires independently. Three of these
questionnaires were previously adapted to Spanish popula-
tions by other authors. The remaining scales were trans-
lated into Spanish using a back-translation technique: the
Behaviour Problems Inventory (BPI), the Checklist of
Supports for Parents of the Handicapped (CSPH), the
SOC Questionnaire and the Parental Stress Index Short
Form (PSI-SF).
The CARS (Schopler et al., 1988; Spanish adaptation
by García-Villamisar and Polaino-Lorente, 1992) provided
808 Autism 19(7)

Table 2.  Demographic information on individuals with ASD.

Individuals with ASD G1: Primary (n = 46) G2: Adolescent (n = 30) G3: Adult (n = 26)

  % % %
ASD
  Autistic disorder 70 67 85
  Asperger’s syndrome 2 3 –
 PDD-NOS 24 17 4
  Other (Rett’s syndrome, Disintegrative Disorder) 4 13 11
Education centre
 Mainstream 41 17 –
  Special education school 13 – 4
  Autism-specific school 46 73 35
  Day centre – 10 61

ASD: autism spectrum disorder; PDD-NOS: Pervasive Developmental Disorder–Not Otherwise Specified.

information on autism severity. The CARS is a 15-item
behaviour scale (e.g. ‘Relationship with people’) with
each item scored from 1 (age-appropriate behaviour) to 4
(severe or profoundly abnormal behaviour). The internal
consistency of the original scale (alpha = 0.94), the Spanish
adaptation (alpha  = 0.98) and the data in this study
(alpha = 0.91) were high.
The BPI (Rojahn et al., 2001) was used to assess behav-
iour problems. The scale comprises 52 items, each scored
from 0 (no problem) to 3 (severe problem). There are three
subscales: Self-injurious Behaviour, Stereotyped Behaviour
and Aggressive/Destructive Behaviour. In this study, we
used the total scale score. The reliability (Cronbach’s alpha)
of the original scale was 0.83; alpha in this study was 0.89.
The CSPH (Bristol, 1979) is a 23-item measure of the
perception of useful social support. Parents rated the per-
ceived usefulness of the support received from, for exam-
ple, partners, schools or social services. Ratings range
from 0 (not useful) to 4 (very useful). No information about
the internal consistency of the original scale is available,
but in this study, Cronbach’s alpha was 0.82.
The SOC Questionnaire (Antonovsky, 1987) is a
29-item questionnaire designed to measure the extent to
which parents find life comprehensible, manageable and
meaningful. Items are rated from 1 to 7, with higher scores
indicating stronger SOC. A total of 11 items contribute to
comprehensibility (e.g. ‘Do you have the feeling that you
are in an unfamiliar situation and don’t know what to
do?’), 10 pertain to manageability (e.g. ‘How often do you
have feelings that you’re not sure you can keep under con-
trol?’), and 8 to meaningfulness (e.g. ‘How often do you
have the feeling that there’s little meaning in the things
you do in your daily life?’). In this study, we used the total
scale score. The internal consistency of the original ques-
tionnaire (measured by Cronbach’s alpha) was 0.88 and
that in this study was 0.90.
The PSI-SF (Abidin, 1995) is a 36-item measure that
assesses levels of stress. Responses are rated from 1
(strongly disagree) to 5 (strongly agree). The scale con-
sists of three subscales, each comprising 12 items: Child
Difficulty (e.g. ‘My child gets upset easily over the small-
est thing’), Parental Distress (e.g. ‘There are quite a few
things that bother me about my life’), and the Parent–Child
Dysfunctional Interaction (e.g. ‘My child smiles at me
much less than I expected’). In this study, we used the total
scale score. Reliability in this study was good (alpha = 0.88)
and similar to that obtained in another recent Spanish study
(alpha = 0.91; Díaz-Herrero et al., 2010).
The Hospital Anxiety and Depression Scale (HADS;
Zigmond and Snaith, 1983; adapted to Spanish by Tejero
et al., 1986) contains 14 items; 7 evaluate anxiety (e.g. ‘I
feel tense or wound up’) and 7 depression (e.g. ‘I feel as if
I am slowed down’). The intensity or frequency of symp-
toms is rated from 0 to 3. Both subscales are internally
consistent (Cronbach’s alpha = 0.80 for anxiety and 0.76
for depression; Mykletun et al., 2001). In this study,
Cronbach’s alpha was 0.78 for anxiety and 0.77 for
depression.
The Brief Psychological Well-being Scale – Spanish
Version (Díaz et al., 2006) is a brief version (29 items) of
the Psychological Well-being Scale (Ryff, 1989). There
are six dimensions: self-acceptance, positive relations,
autonomy, environmental mastery, purpose in life, and
personal growth. Ratings range from 1 (completely disa-
gree) to 4 (completely agree). Example items include ‘I
like most aspects of my personality’ and ‘In general, I
feel I am in charge of the situation in which I live’. The
internal consistency of the Spanish version of the scale
was good (Cronbach’s alpha = 0.84); alpha for this study
was 0.87.
Analysis of data
Group differences were initially explored using multivari-
ate analyses of variance (MANOVAs), which were fol-
lowed by one-way analyses of variance (ANOVAs) and
Pozo and Sarriá 809
Table 3.  One-way analyses of variance (ANOVAs) and multiple comparisons of group mean values on study variables.
Variables F p value Partial η2
Autism severity 0.50 0.606
Behaviour problems 3.76 0.027* 0.07
 
 
Stress 0.40 0.672
Anxiety 3.33 0.040* 0.06
 
 
Depression 4.61 0.012* 0.09
 
 
Psychological well-being 2.51 0.087
*p < 0.05.
multiple pairwise comparisons using Bonferroni adjust-
ment. The predictive power of the study variables on stress,
anxiety, depression and psychological well-being was
examined using multiple regression analyses. Missing val-
ues were limited to specific items on the questionnaires and
were less than 1% of responses. We applied average values
derived from the existing values to fill in missing items.
Results
Group comparisons
MANOVA was used to test for group differences across
three dimensions: children’s characteristics (autism sever-
ity, behaviour problems), parental predictors (social sup-
port, SOC) and parental well-being (stress, anxiety,
depression, psychological well-being) (see Supplementary
Table 1 for descriptive statistics). No significant group dif-
ferences were found in parental predictor variables (social
support, SOC), but Roy’s largest root test revealed signifi-
cant group differences in both the characteristics of the
children (Θ = 0.83, F(2, 99) = 4.09, p = 0.02; η2 = 0.07,
power = 0.71) and parental well-being (Θ = 0.17, F(4,
97) = 1.89, p = 0.04; η2 = 0.10, power = 0.70). Effect sizes
were small, suggesting that only 7% or 10% of the vari-
ance in these variables was explained by the age group.
Separate one-way ANOVAs for each of these variables
indicated significant age group differences in behaviour
problems but not in autism severity. In relation to the
parental well-being variables, there were no significant
group differences for stress and psychological well-being,
but there were significant differences for anxiety and
depression (see Table 3).
Multiple post hoc comparisons were conducted only with
those variables that yielded significant group differences
using the Dunn (Bonferroni) test for all possible pairwise
contrasts. In relation to children’s behaviour problems, par-
ents of adults reported significantly lower levels than parents
of primary school-age children. In relation to parental
Multiple comparisons p value (Bonferroni)
 
G1–G2 1.00
G1 > G3 0.025*
G2–G3 0.14
 
G1–G2 0.358
G1 > G3 0.042*
G2–G3 1.00
G1 > G2 0.026*
G1–G3 0.066
G2–G3 1.00
 
well-being, parents of primary school-age children reported
significantly higher anxiety levels than parents of adults and
higher depression levels than parents of adolescents.
Predictors of parental psychological adaptation
Multiple regression analysis was conducted to investigate
the best predictors of parental well-being in the full sample.
Stepwise forward regression analyses were performed for
each criterion variable (stress, anxiety, depression, psycho-
logical well-being) using age group (primary school, ado-
lescent, adult), autism severity (CARS), behaviour
problems, social support, parental age and SOC as predictor
variables. Data were screened for violations of assumptions
of linearity, normality, independence, homogeneity of vari-
ances and multicollinearity prior to analysis (see Table 4).
We used the adjusted R2 index as an indicator of the percent-
age of variation in the dependent variable explained after
adjusting for sample size and the number of predictors. The
four models yielded large effect sizes (Cohen, 1992).
The main predictor of parental stress levels was SOC,
although behaviour problems and autism severity were
also significant. Specifically, higher levels of SOC pre-
dicted lower levels of stress, whereas higher levels of
behaviour problems and autism severity predicted higher
levels of stress. The relevant predictors for both anxiety
and depression were SOC and group membership, with
higher SOC and older age group predicting lower levels of
anxiety and depression. The model for psychological well-
being included three significant predictors: SOC, parental
age and group membership. Higher SOC and older age
group predicted higher psychological well-being; higher
parental age predicted lower psychological well-being.
Discussion
The main aim of this study was to compare the well-being
of parents of primary school-age children, adolescents and
adults with ASD. In addition, we examined the extent to
810 Autism 19(7)

Table 4.  Regression analyses predicting stress, anxiety, depression and psychological well-being in total sample.

Criterion variable/predictor variables ΔR2 df F B β p value

Stress
 SOC 0.35 (1, 100) 53.50** −0.36 −0.47 <0.001
  Behaviour problems 0.07 (1, 99) 12.06** 0.27 0.23 0.007
  Autism severity 0.03 (1, 98) 6.02* 0.44 0.19 0.016
  Total adjusted R2 = 0.44  
Anxiety
 SOC 0.40 (1, 100) 66.40** −0.09 −0.61 <0.001
 Group 0.02 (1, 99) 4.21* −0.70 −0.16 0.043
  Total adjusted R2 = 0.41  
Depression
 SOC 0.53 (1, 100) 111.35** −0.11 −0.70 <0.001
 Group 0.02 (1, 99) 4.45* −0.63 −0.14 0.037
  Total adjusted R2 = 0.54  
Psychological well-being
 SOC 0.49 (1, 100) 95.61** 0.60 0.70 <0.001
  Parental age 0.02 (1, 99) 4.09* −0.90 −0.42 <0.001
 Group 0.05 (1, 98) 9.80** 8.78 0.35 0.002
  Total adjusted R2 = 0.54  

SOC: sense of coherence.

*p < 0.05; **p < 0.001.

which parental well-being was predicted by the character-
istics of their children, social support, parental age and
their perception of the situation (SOC).
The results revealed differences in parental well-being
depending on the life stage of their children. Although
stress and psychological well-being levels were similar
across age groups, we found some differences in other out-
come variables. Specifically, anxiety levels were lowest
among parents of adults, and depression scores were lower
in parents of adolescents compared with parents of pri-
mary school-age children. These results are consistent
with our hypothesis and previous research showing sus-
tained levels of stress in parents of children with ASD
(Seltzer et al., 2010) but decreased maternal anxiety over
time (Barker et al., 2011; Lounds et al., 2007). However,
contrary to our hypotheses, parental well-being was not
related to having an older son or daughter, while depres-
sion was lower in parents of adolescents than in parents of
primary school-age children.
Parental SOC values emerged as the main predictors of
parental well-being, with higher SOC levels associated with
reduced stress, anxiety and depression and greater psycho-
logical well-being. However, group membership (i.e. being
the parent of a child, adolescent or adult with ASD) was also
a significant predictor for all well-being variables apart
from stress. Consistent with previous research, behaviour
problems and autism severity were also predictors of paren-
tal well-being in addition to SOC. In contrast, higher paren-
tal age was not associated with increased well-being. Thus,
despite improvements in their child’s symptoms and
extended parenting experience, parents of adolescents or
adults with ASD continue assuming multiple responsibili-
ties and may experience negative consequences as a result
of their own ageing process. In particular, the need to care
more for themselves as they age and increasing concerns
regarding the future of their children with ASD when they
die or become too elderly to care (Gray, 2002; Van
Bourgondien et al., 2014) may compromise their psycho-
logical well-being.
The results of this study should be interpreted with cau-
tion, as the cross-sectional nature of the design prevents us
from determining the direction of the relationships between
variables. There are also other limitations: all measures,
with the exception of the CARS, were self-report question-
naires; selection of participants was based on convenience
sampling; participants were exclusively from Spanish
families. There is wide cultural variation in the dynamics
of families and in the availability of social supports for
people with autism (Dyches et al., 2004; Mandel and
Novak, 2005); thus, we need to be cautious in generalising
these results to other cultures.
Despite its limitations, the current study presents a
comprehensive assessment of the well-being of a large
sample of parents of children with ASD across a wide age
range. This assessment also included both negative and
positive aspects of parental well-being. A further strength
was the inclusion of fathers, while most other studies in
this area are based on only the responses of mothers. The
results have implications for research and interventions
aimed at families with children with ASD. One of the main
findings of this study was the significant role that SOC
plays in parental adaptation across the lifespan of their
Pozo and Sarriá 811
children with ASD. Antonovsky (1992) argued that SOC
should be conceived as a personality characteristic that
functions as a coping style and promotes healthy adapta-
tion. He suggests that people with a strong SOC perceive
the world as predictable, manageable and meaningful and
view stressors as important challenges that are worth fac-
ing. The outcomes of this study are consistent with this
view, as SOC has a strong negative relationship with
parental stress, anxiety and depression and a positive rela-
tionship with psychological well-being.
This pattern of relationships raises the interesting ques-
tion of whether SOC is a construct that overlaps with other
measures of mental health (cf. Antonovsky, 1987; Frenz
et al., 1993). The debate is still open, but more recent stud-
ies have shed light on this issue. Olsson et al. (2006) ana-
lysed SOC as a dependent variable in an explanatory
model and found that family relational and psychopatho-
logical variables contributed significantly to the explana-
tion of SOC. They concluded that SOC is multifaceted and
therefore more than simply an opposite state relative to
depression. In a systematic review of research published
from 1992 to 2003 on the relationship between SOC and
physical and mental health, Eriksson and Lindström (2006)
also concluded that ‘SOC comes close to mental health
and mental well-being, but it is not the same as mental
health’ (p. 379).
The findings from this study are consistent with exist-
ing evidence identifying a relationship between SOC and
the well-being of parents of children with ASD (Mak et al.,
2007; Oelofsen and Richardson, 2006; Olsson and Hwang,
2002). Effective family interventions should therefore aim
to improve parental SOC by addressing its three compo-
nents: the sense of comprehensibility, manageability and
meaningfulness. Providing parents with clear and consist-
ent information about the characteristics of ASD, behav-
iour problems, and potential changes in demands
throughout an individual’s life could increase the compre-
hensibility of the problem. Parents should also be informed
about the support that is available to help them manage
family demands and to increase feelings of empowerment,
manageability and control over their lives.
The results of this study also indicate that parental
stress is constantly present, independent of the age of their
children with ASD, but anxiety or depression may be
lower in parents of adolescents or adults compared with
parents of younger children. Changes in their children’s
behavioural problems over time, the benefits of cumula-
tive experience, and normative mid-age improvements in
emotional well-being may account for the lower emotional
distress observed in parents of older individuals with ASD.
However, older parental age was associated with poorer
well-being, and as increasing age poses new demands and
concerns, this may compromise well-being. Interventions
aimed at supporting families of adults with ASD should
also consider both the challenges of services and real
opportunities for adults with ASD and the concerns and
needs of their ageing parents.
Acknowledgements
We are sincerely grateful to Beatriz López, María Núñez and
anonymous reviewers for their valuable comments and to the
families who participated in this study.
Funding
The preparation of this article was supported by grant
PRX14/00205 from the Salvador de Madariaga Programme of
Spanish Ministry of Education.
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