Research in Autism Spectrum Disorders 74 (2020) 101557

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Research in Autism Spectrum Disorders

journal homepage: www.elsevier.com/locate/rasd

Examining the relationship between social support and stress for

T
parents of individuals with autism
Suzanne Robinson, Jonathan A. Weiss*
York University, Department of Psychology, 4700 Keele Street, Toronto ON, M3J 1P3, United States

A R T IC LE I N F O ABS TRA CT

Keywords: Background: Social support has been considered a fundamental component of promoting parent
Autism and child well-being. Best understood as a multi-faceted resource, perceived and received support
Social support appear to be distinct concepts. The current study examined how received and perceived social
Parents support may be associated with, and moderate, the impact of child behavior problems on parent
Parent stress
stress.
Method: This study examined the stress-buffering effects of perceived and received support in a
sample of 249 caregivers of individuals with autism.
Results: Both types of support were significantly associated with less reported stress, when the
two support types were examined individually. When considered together in a single model,
received support was not uniquely associated with stress. Neither kinds of social support mod-
erated the association between a commonly known stressors and stress.
Conclusions: This was the first study involving parents of individuals with autism assessing the
stress-buffering effects of social support using two types of support. Existing social support in-
terventions typically focus on increasing received support as a mechanism for improving emo-
tional well-being, and the current results suggest that perceived support may have a more robust
and direct link.

1. Introduction

Raising a child with autism can have a profound impact on family belief systems, values, and priorities and research examining
family resources is a fundamental component of promoting parent and child well-being. Social support is one of the most well
documented resources known to promote well-being (Taylor, 2011). A critical review of social support identified 30 different de-
finitions applicable to addressing parental needs, with 25 in current use among researchers (Williams, Barclay, & Schmied, 2004). It
has been argued that social support is best understood as a multidimensional umbrella term, with specific facets that can be measured
as distinct concepts (Gottlieb & Bergen, 2010).
Received social support and perceived social support have emerged as two such prominent facets. Cohen, Gottlieb, and
Underwood (2000), in the most frequently cited definition of social support, state that it is “the social resources that persons perceive
to be available or that are actually provided to them by nonprofessionals in the context of both formal support groups and informal
helping relationships” (italics added, p.4). Received social support is the actual transference of helping behaviours through social
networks (Wethington & Kessler, 1986), whereas perceived social support is the belief that support is adequate and/or support is
available if needed (Thoits, 1982). Measurement of received support typically involves quantifying concrete supportive behaviours

⁎
Corresponding author.
E-mail address: jonweiss@yorku.ca (J.A. Weiss).

https://doi.org/10.1016/j.rasd.2020.101557
Received 20 August 2019; Received in revised form 22 March 2020; Accepted 29 March 2020
1750-9467/ © 2020 Elsevier Ltd. All rights reserved.
S. Robinson and J.A. Weiss Research in Autism Spectrum Disorders 74 (2020) 101557

experienced within a specified time frame. Perceived support measures assess how supported one feels rather than specific or
concrete behaviours experienced. A small correlation is consistently found between self-reported received and perceived social
support, as reported in Haber and colleague’s meta-analysis (e.g., r = .35; Haber, Cohen, Lucas, & Baltes, 2007).
Distinguishing between perceived and received supports is important for conceptual reasons. It has been suggested that the two
types of support may at times be experienced differently: While perceiving that support is available, if needed, can leave a person
feeling in control and empowered (Reinhardt, Boerner, & Horowitz, 2006), receiving support has been characterized as a “mixed
blessing” (Bolger & Amarel, 2007), as it may provide tangible aid and increase closeness, but also contribute to feeling dependent on
others and impact self-esteem (Reinhardt et al., 2006). Researchers have suggested received support is most beneficial when it is
“invisible”, or when it is provided in subtle and indirect ways that do not threaten self-confidence (Bolger & Amarel, 2007). Others
have speculated that not all received support is welcome, needed, or even helpful, particularly when supportive actions do not match
the support needs of recipients (Coyne, Wortman, & Lehman, 1988). A small handful of studies have measured both perceived and
received support to explore how they each uniquely relate to well-being. For instance, perceived support has been reported to be
negatively associated with distress and depression, while received support is reported to be positively associated (Cruza-Guet,
Spokane, Caskie, Brown, & Szapocznik, 2008; Komproe, Rijken, Ros, Winnubst, & t’Hart, 1997). Others have shown no association for
received support and distress, once perceived support is taken into account (Kaul & Lakey, 2003; Wethington & Kessler, 1986).
Alternatively, Reinhardt et al. (2006) noted a small association between received support and well-being after perceived support was
taken into account, for older adults with physical impairments. Taken together, these studies demonstrate the mixed evidence for
received support, and the importance of including both perceived and received social support in the same analytical model.
Despite evidence indicating that perceived and received social support are distinct concepts, they are often not distinguished in
theoretical models. The stress buffering model is the most prominent model to explain the process by which social support interacts
with an individual’s well-being and health (e.g., Cohen & Wills, 1985). The model posits that the relationship between stressors and
manifestations of stress is mitigated by social support. Thus, social support is a resource that protects individuals from the effects of
stressors, and is more important to address highly stressful contexts. A second model, referred to as the main effect model, proposes
that social support helps individuals regardless of stressor levels (Cohen & Wills, 1985).
Many studies document the benefits of social support for parents of individuals with autism (e.g., Barker et al., 2011; Boyd, 2002;
Bromley, Hare, Davison, & Emerson, 2004; Ekas, Lickenbrock, & Whitman, 2010; Lu et al., 2018; Pepperell, Paynter, & Gilmore,
2018; Zaidman et al., 2017). For instance, social support has been linked to decreased distress (Bromley et al., 2004), parenting stress
(Lu et al., 2018; Zaidman et al., 2017) and improved overall well-being (Barker et al., 2011; Ekas et al., 2010) and life satisfaction (Lu
et al., 2018). To date, a small number of studies have examined the main effect and stress buffering models for parents of individuals
with autism using varied measures of social support and looking at different kinds of outcomes (e.g., stress, distress, physical health,
mental health). In support of the main effect model, some cross sectional studies have found that perceived support is negatively
associated with maternal or parental reports of distress, but that it does not act as a moderator of the stressor-distress relationship
(Hastings & Johnson, 2001; Lai, 2013; Tobing & Glenwick, 2007). Similarly, a 2-year-long longitudinal study of 90 parents of children
with autism found that perceived availability of informal support was associated with decreased depression over time (a main effect),
but did not act as a moderator between child symptom severity and parent depression, as the stress buffering model proposes (Benson
& Karlof, 2009). In support of the buffering model, the association between stress and physical health was moderated by perceived
social support among a sample of 109 parents of individuals with autism or a non-specified developmental disability (Cantwell,
Muldoon, & Gallagher, 2014). In further support of the stress-buffering model, perceived social support moderated the relationship
between parenting stress and life satisfaction for 479 parents of children with autism in China (Lu et al., 2018). In contrast, for 58
parents of children with autism, received support was not associated with depression, nor did it buffer the effects of stressors (Dunn,
Burbine, Bowers, & Tantleff-Dunn, 2001). Existing studies within the field of autism offer some support for each theoretical model,
although none of these studies have compared the effects of perceived and received social support within these models.
Although social support has been a well-studied resource for over thirty years, numerous gaps in the autism literature remain. We
do not yet understand how received and perceived social support are distinct for parents of individuals with autism, as social support
in autism research is typically measured as a unitary construct or on a single facet rather than incorporating multiple components.
Further research is needed to better understand how received and perceived social support differ among parents of individuals with
autism, and to clarify the mechanisms by which support operates on stress (i.e., main effects or stress buffering effects).

2. Current study

The current study aimed to better understand how received and perceived social support differs among parents of school-aged
children with autism. More specifically, we sought to answer the question: To what extent do self-reported received and perceived
social support moderate the association between a known stressor (child behaviour problems) and parent’s perceived stress, as the
stress-buffering model proposes? It was hypothesized that perceived support would moderate the relationship between child beha-
viour problems and parent stress, after taking into account control variables. Specifically, with lower levels of perceived social
support, child behaviour would be strongly associated with parent stress, whereas when perceived social support was high, the
association between child behaviour and parental stress would be weaker. It was hypothesized that received social support would not
emerge as a stress buffer.

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S. Robinson and J.A. Weiss Research in Autism Spectrum Disorders 74 (2020) 101557

3. Methods

3.1. Procedure

This work was carried out in accordance with the ethical standards of the responsible committee on human research and with the
Declaration of Helsinki as revised in 2000. Following approval from the York University Research Ethics Board, parents of individuals
with autism were recruited through postings on Canadian Autism websites, community organizations, and through an ongoing
research database available through the research lab. A link to the online consent form and survey was provided and parents were
invited to contact the researcher by email or phone to request a paper survey.
To be eligible for this study, participants were required to have a school-aged child (ages 4–18 years) with a confirmed diagnosis
of autism and be able to complete the survey in English. The presence of autism was confirmed in two ways. First, similar to other
parent survey research (e.g., Blumberg et al., 2013; Goedeke, Shepherd, Landon, & Taylor, 2019; Lavelle et al., 2019; Mazurek,
Shattuck, Wagner, & Cooper, 2012), parents confirmed that a professional with the capacity to diagnose (i.e., psychologist, psy-
chiatrist, developmental pediatrician, general pediatrician, family doctor, nurse practitioner, multidisciplinary or developmental
team, neurologist, or “other and specify”) provided the child with some form of an autism spectrum diagnosis (i.e., Autism Spectrum
Disorder, PDD-NOS, Asperger Syndrome, Autistic Disorder), and provided the date of diagnosis. Second, the parent-reported score on
the Social Communication Questionnaire – Lifetime (SCQ; Rutter, Bailey, & Lord, 2003) was required to be above a pre-specified cut-
off of 11, as has been used in other survey studies involving parents of individuals with autism (e.g., Allen, Silove, Williams, &
Hutchins, 2007; Baker, Richdale, Short, & Gradisar, 2013; Eaves, Wingert, Ho, & Mickelson, 2006; Wiggins, Bakeman, Adamson, &
Robins, 2007). This approach to using parent report of an autism diagnosis combined with autism symptom screening tools has been
validated (see Daniels et al., 2011). Sixteen participants were removed based on inadequate diagnostic information or subthreshold
autism symptoms as measured by the SCQ.

3.2. Participants

Data were available for 249 parents who sufficiently completed the survey (i.e., at least 75 % of survey items) and met all
eligibility criteria. As shown in Table 1, parent age ranged from 27 to 62 years (M = 43.98, SD = 6.2, Median = 44). Participants
were primarily mothers and currently married/common law. Most parents had graduated college or university. Parents were from
suburban, urban, rural, and remote settings across Canada.
The individuals with autism ranged in age from 4 to 18 years (M = 11.47, SD = 3.95, Median = 11) and most were male.
Additional child diagnoses from a doctor, as reported by parents (not mutually exclusive), included intellectual disability, learning
disability, attention deficit disorder or attention deficit hyperactivity disorder, anxiety or depression, and behaviour or conduct
problems. Nearly half had at least one chronic physical health condition, including epilepsy, cerebral palsy, or asthma.

3.3. Measures

3.3.1. Demographics
Parents reported their own age, gender, marital status, and income as well as their child’s age, gender, and diagnoses.

3.3.2. Autism symptoms

The Social Communication Questionnaire – Lifetime (SCQ; Rutter et al., 2003) was used to assess autism symptom severity. The
SCQ is an autism symptom screener assessing social and communication behaviours and consists of 40 yes-or-no items. Total scores
on the SCQ can range from 0 to 40, with higher scores indicate greater autism symptom severity. In the current study, scores ranged
from 11 to 38 (M = 22.17, SD = 6.34), and scores had adequate internal consistency (coefficient α = .82). The scale has been used as
an indicator of autism symptom severity in numerous studies (e.g., Movsas & Paneth, 2012; Pickles et al., 2016).

3.3.3. Child behaviour problems

Child behaviour problems were assessed using the Strengths and Difficulties Questionnaire (SDQ; Goodman, 1997). The 25 items
assess prosocial behaviour, peer relationship problems, conduct problems, hyperactivity, and emotional symptoms. Each item is
scored using a 3-point scale (not true, somewhat, and certainly true) and a total difficulties score is calculated by summing the four
problem behaviour subscales. Example items include “generally liked by other children”, “easily distracted, concentration wanders”,
and “often loses temper”. In the present study, prosocial behaviour and peer subscales were not used because they represent areas of
functioning represented in the diagnostic criteria for autism, consistent with other autism studies (e.g., Totsika, Hastings, Emerson,
Lancaster, & Berridge, 2011). Scores ranged from 0 to 27 (M = 12.86, SD = 5.09) out of a possible total value of 30. The SDQ has
shown good internal consistency in a sample of parents of children with autism (0.97; Totsika et al., 2013). Current study coefficient
was α = .78 for total difficulties (comprised of conduct problems, hyperactivity and emotional symptoms).

3.3.4. Parent stress

The Stress subscale from the Depression Anxiety and Stress Scale (DASS-42; Lovibond & Lovibond, 1995) is a 14-item subscale
assessing global perceptions of stress. The stress subscale measures the extent to which individuals had difficulty relaxing, feelings of
nervousness, agitation, intolerance, impatience, or irritability in the last week. Item responses are given on a four-point Likert-type

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S. Robinson and J.A. Weiss Research in Autism Spectrum Disorders 74 (2020) 101557

Table 1
Parent, Household and Child Characteristics.
n (%) or M (SD)

Parent/Household Variables
Age (n = 233) 43.98(6.21) Range: 27−64
Gender
Female 238 (95.6)
Male 10 (4.0)
Transgender 1 (.4)
Relationship status (n = 248)
Married/common law 210 (83.1)
Single (never married) 10 (4.0)
Separated/Divorced 31 (12.5)
Widowed 1 (.4)
Education level (n = 248)
High school or less 23 (9.2)
Partial college (at least one year) 22 (8.9)
College diploma/ university undergraduate degree 150 (60.5)
Graduate degree 53 (21.4)
Annual household income after taxes (n = 244)
$45,000 or less 57 (23.4)
$45,000−95,000 105(43.0)
$95,000 or more 82 (33.6)
Geographical Location (n = 248)
Suburban area 99 (39.9)
Urban area 97 (39.1)
Rural 41 (16.5)
Remote 11 (4.4)

Child Variables
Age 11.47 (3.95) Range: 4−18
Gender
Female 41 (16.5)
Male 207 (83.1)
Transgender 1 (0.4)
Born outside of Canada 12 (4.8)
Autism Symptoms (SCQ) 22.17(6.34) Range: 11−38

Main Study Variables

Perceived social support (SPS) 75.06(11.85) Range:42−96
Received support (ISSB) 1.87(.57) Range: 1−4
Stress (DASS subscale) 15.46(8.91) Range 0−41
Child behaviour (SDQ) 12.86(5.09) Range 0−27

Note. N = 249.

scale from 0 (did not apply to me at all) to 3 (applied to me very much or most of the time), where higher scores suggest more perceived
stress. Example items include “I found it difficult to tolerate interruptions to what I was doing” and “I was in a state of nervous
tension”. Total scale scores have a possible range of 0–42, and scores in the current study ranged from 0−41 (M = 15.46, SD = 8.91).
The scale has shown solid reliability for parents of children with developmental disabilities or autism (e.g., Merkaj, Kika, & Simaku,
2013). In the current study, scores had good internal consistency (coefficient α = .94).

3.3.5. Perceived social support

Perceived social support was measured with the Social Provisions Scale (Cutrona & Russell, 1987). The scale provides a summary
score of global perceived availability of social support. The 24 items are scored using a four-point Likert-type scale ranging from
strongly disagree to strongly agree, with higher scores suggesting greater perceptions of support, providing a total score between 24 and
96. Example items include “I feel part of a group of people who share my attitudes and beliefs”, “there are people I can count on in an
emergency”, and “there is someone I could talk to about important decisions in my life”. Scores in the current study ranged from 42 to
96 (M = 75.06, SD = 11.85). The scale had excellent internal consistency in a large-scale study of its psychometric properties
(coefficient α = .92) and good convergent and divergent validity (Cutrona & Russell, 1987). In the current study, scores had good
internal consistency, α = .94.

3.3.6. Received social support

The Inventory of Socially Supportive Behaviours (ISSB; Barrera, Sandler, & Ramsay, 1981) was used to measure the frequency of
receipt of socially supportive behaviours during the previous month. The 40 items are scored using a five-point Likert-type scale
ranging from not at all to about every day, with higher scores suggesting greater received of support. A total score is summed and
averaged, offering scores between 1 and 5. Scores in the current study ranged from 1 to 4 (M = 1.87, SD = .57). Example items

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S. Robinson and J.A. Weiss Research in Autism Spectrum Disorders 74 (2020) 101557

include “did some activity to help you get your mind of things” and “suggested some action you should take”. Excellent internal
consistency has been reported (coefficient α = .93) and is considered the most widely used and well-validated measure of received
support (Gottlieb & Bergen, 2010). In the current study, scores had good internal consistency, α = .90.

3.4. Analysis plan

To investigate the moderating effects of perceived and received social support on the relationship between child behaviour
problems and parent stress, three separate hierarchical multiple regression analyses were calculated. Disjunctive (single) moderation
effects for perceived and received social support effects were specified in the first and second analyses and the third analysis esti-
mated the conjunctive (multiple) moderation effects of received and perceived social support together.
For each hierarchical regression analysis, control variables were entered first, followed by child behaviour problems and the
social support measure as the second step, and the third step added the interaction terms (the product of predictor and moderator, for
example, child behaviour problems × perceived support). Control variables included family and child variables significantly cor-
related with parent stress measures in preliminary analyses. Continuous predictor variables were centered to address potential
multicollinearity and add to the interpretability of the interaction terms (Aiken & West, 1991). Data was checked for univariate
outliers. Data points outside of 3.29 standard deviations from the mean were considered outliers (Tabachnick & Fidell, 2012), and no
scores were identified. Univariate normality was assessed for the main study variables using skewness and kurtosis indices, and visual
inspections of box plots and histograms. Each study variables had skew and kurtosis values within an acceptable range (> 1.0).

4. Results

4.1. Relationships among parent or child characteristics with main study variables

Pearson correlations and independent samples t-tests were used to assess for the relations among main study variables with child
and parent characteristics (child age, child sex, autism symptoms as measured by the SCQ), the presence of a child psychiatric
condition, presence of a child medical condition, presence of an intellectual disability diagnosis, parent education level, household
income, and parent relationship status (married versus not). Reported chronic health conditions included asthma, diabetes, epilepsy/
seizure disorder, hearing problems, vision problems not corrected by glasses or contacts, bone/joint and muscle problems, brain
injury, chronic gastrointestinal problems, and other (e.g., scoliosis, heart conditions, or kidney disease). Reported psychiatric di-
agnoses included ADHD, anxiety/depression, or conduct and behaviour problems and other (e.g., eating disorder, obsessive com-
pulsive disorder).
Parent stress was positively associated with child autism symptoms (r = .15, p =.02) and negatively associated with child age (r
= -.15, p = .02), and parent education, (r = -.16, p = .01). Stress scores were not associated with household income (r = -.04, p
= .57) and did not differ according to child sex (t(244) = -.88, p =.27), presence of a child chronic health condition (t(244) = 1.45,
p =.15), psychiatric condition (t(244) = 1.50, p =.10), intellectual disability diagnosis (t(244) = -1.33, p =.90), or parent marital
status (t(244) = 1.02, p =.31).
Perceived social support was negatively correlated with autism symptoms (r = -.18, p =.003), and was positively associated with
parent education level (r = .27, p < .001) and household income (r = .22, p = .001). Additionally, perceived social support was
significantly lower for parents of a child with a chronic health condition (M = 73.42, SD = 12.51) compared to parents of a child
without (M = 76.45, SD = 11.23; t(244) = 2.0, p =.04). Perceived support was not significantly associated with child age (r = .04, p
= .49), and there were also no mean differences according to child sex (t(244) = 1.45,p =.15), presence of an intellectual disability
(t(244) = -1.71,p =.09), psychiatric condition (t(244) = -.88,p =.37), or parent marital status (t(244) = 1.60, p =.11)
Received support was negatively associated with child autism symptoms (r = -.14, p =.02), and not significantly correlated with
other parent and child factors. This included child age (r = -.01, p = .91), parent education level (r = .10, p =.11), household
income (r = .08, p =.22). Further, received support levels did not differ according to child sex (t(244) = 1.64, p =.10), intellectual
disability (t(244) = -.07,p =.94), child chronic health condition (t(244) = -.84, p =.40), child psychiatric diagnosis (t(244) = -.01, p
=.99), or parent marital status (t(244) = 1.40, p =.17).
Child behaviour problems was positively associated with child autism symptoms (r = .15, p =.02), and negatively associated with
parent education level (r = -.18, p = .005). Child behaviour problems were significantly higher when the child had at least one
psychiatric diagnosis (M = 14.13, SD = 5.02) rather than no psychiatric diagnosis (M = 10.86, SD = 4.48; t(239) = 5.18, p < .001).
Child behaviour problems were not associated with child age (r = -.08, p = .20), or household income, (r = -.03, p =.67). There
were also no significant mean differences across child sex (t(244) = -1.23,p =.22), intellectual disability (t(244) = .88, p =.38), or
presence of a child chronic health condition (t(244) = 1.31, p = .19), or parent marital status (t(244) = -2.01,p =.05).

4.2. Strength of association between received and perceived support

As shown in Table 2, there was a significant positive association between self-reported received and perceived social support.
Perceived support was associated with child behaviour problems and parent stress, while received support was only associated with
parent stress. Additional analyses tested whether the relationship between perceived and received social support was consistent
across different demographic and clinical subgroups. Pairwise comparisons between two correlations were based on parent marital
status (single vs not), home location (rural/remote vs suburban/urban), parent education (graduated university/college vs not), child

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S. Robinson and J.A. Weiss Research in Autism Spectrum Disorders 74 (2020) 101557

Table 2
Bivariate Correlations Among Main Study Variables.
1. 2. 3. 4.

1. Perceived social support 1 – – –

2. Received social support .58* 1 – –
3. Child behaviour −.17* −.12 1 –
4. Stress −.44* −.26* .31* 1

Note. * p < .05.

age (median split of 11 years vs 12 and older), child gender (male vs female), and child diagnoses (presence of chronic health
diagnosis vs not; presence of any psychiatric diagnosis vs not; presence of depression/anxiety vs not; presence of conduct/behaviour
problems vs not; presence of ADHD vs not; presence of an intellectual disability diagnosis vs not). None of the correlations between
received and perceived support significantly differed across these pairwise comparisons using Fisher’s r-to-z transformation to test
difference between two correlations, indicating the association between received and perceived support is consistent irrespective of
demographic and clinical variables.

4.3. Perceived support as a stress-buffer

As shown in Table 3, an initial regression analysis was calculated to test the hypothesis that perceived support would moderate
the association between child behavior problems and stress, in an overall model that accounted for 28 % of the variance, F(7,
234) = 12.95, p < .001. After entering in the control variables (parent education, child age, and autism symptoms), higher levels of
child behaviour problems and lower levels of perceived social support emerged as significant predictors (accounting for 5% and 13.8
% unique variance, respectively). The interaction between behaviour problems and perceived social support was not significant
(b = 0.003, p = .61), failing to support the moderation hypothesis.

4.4. Received support as a stress-buffer

A second regression analysis tested the hypothesis that received social support would be a potential moderator, with similar
patterns emerging, R2 = .19, F(7, 234) = 8.01, p < .001. As shown in Table 4, received social support and child behaviour problems
were each associated with parent stress. Received social support was associated with decreased parent stress (b = -3.67, p = .001, 5%
unique variance), and child behaviour problems were associated with higher levels of parent stress, (b = 0.44, p < .001, 6% unique
variance). The interaction was not significant (b = -0.01, p =.94).

4.5. Perceived and received support as stress-buffers in a multiple moderation model

The third planned analysis testing multiple moderation effects of received and perceived social support together was run with the
same covariates included, R2 = .28, F(9, 232) = 10.07, p < .001, as shown in Table 5. As expected, perceived social support (b =
-0.28, p < .001, 8.6 % unique variance) and child behaviour problems (b = 0.40, p = .001, 5% unique variance) were each sig-
nificantly correlated with parent stress, but not to received social support. Again the moderation hypothesis was not supported, with
neither interaction terms emerging as significant (i.e., received social support × child behaviour problems, perceived social sup-
port × behaviour).

5. Discussion & implications

This study aimed to clarify how perceived and received social support uniquely related to parent stress in the context of caring for
someone with autism. To our knowledge, this was the first published study involving parents of children with autism to incorporate
measures of both perceived and received social support. Results indicated that both types of support were significantly associated

Table 3
Perceived social support predicting stress.
β B SE B p

Constant 16.31 4.60 < .001

Child behaviour problems 0.23 0.40 0.10 < .001
Perceived social support −0.40 −0.30 0.04 < .001
Behaviour x support −0.08 −0.01 0.01 .61
Child age −0.13 −0.29 0.15 .06
Autism symptoms (SCQ) 0.06 0.09 0.08 .30
Parent education −0.03 −0.03 0.61 .96

Note. N = 249. β = standardized slope estimate. R2 = .30, F = 12.96, p < .001.

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S. Robinson and J.A. Weiss Research in Autism Spectrum Disorders 74 (2020) 101557

Table 4
Received social support predicting stress.
β B SE B p

Constant 21.10 4.79 < .001

Child behaviour problems 0.26 0.44 0.11 < .001
Received social support −0.24 −3.67 0.94 < .001
Behaviour x support −0.01 −0.01 0.18 .94
Child age −0.12 −0.28 0.16 .09
Autism symptoms (SCQ) 0.08 0.10 0.09 .24
Parent education −0.07 −0.76 0.64 .23

Note. N = 249. β = standardized slope estimate. R2 = .19, F = 8.02, p < .001.

Table 5
Perceived and Received social support predicting stress.
β B SE B p

Constant 16.28 4.64 < .001

Child behaviour problems 0.23 0.40 0.10 < .001
Perceived social support −0.38 −0.28 0.05 < .001
Behaviour x perceived support −0.07 −0.01 0.01 .45
Received social support −0.03 −0.41 1.09 .70
Behaviour x received support −0.04 0.12 0.22 .58
Child age −0.13 −0.30 0.16 .06
Autism symptoms (SCQ) 0.06 0.09 0.08 .29
Parent education −0.01 −0.02 0.62 .98

Note. N = 249. β = standardized slope estimate. R2 = .28, F = 10.07, p < .001.

with less reported stress when the two support types were examined individually. When considered together in a single model
though, received support was not uniquely associated with stress. These findings are consistent with research from the general
population when both facets of support have been measured. Specifically, robust relationships are frequently reported between
perceived support and various mental health outcomes, and there has been weaker support for received support’s benefits once
perceived support is taken into account (Cruza-Guet et al., 2008; Kaul & Lakey, 2003; Komproe et al., 1997; Lindorff, 2000; Reinhardt
et al., 2006).
Current study results highlight the importance of perceived social support for parents of individuals with autism. Research has
suggested perceived support is beneficial for a number of reasons. Believing that social support is available and helpful can be
comforting and reassuring, which may bolster self-efficacy, and help individuals feel empowered and confident to effectively manage
stressors on their own or access supports when needed (Bolger, Zuckerman, & Kessler, 2000; Green & Rodgers, 2001). This perceived
support may also contribute to the experience of social connectedness (Reinke & Solheim, 2015), decreasing loneliness and increasing
hope (Ekas, Pruitt, & McKay, 2016), which in turn may be why it continues to matter in terms of stress. While received support was
not significantly associated with decreased stress once perceived support was taken into account, there was no evidence to suggest
received support negatively impacts well-being as some have reported (e.g., Cruza-Guet et al., 2008; Komproe et al., 1997). It is
possible that parents were receiving needed support, and this matching of support needs was beneficial. Although support needs were
not specifically measured in the current study, parents of individuals with autism are faced with unique stressors and often report
higher support needs than other adults (Chiri & Warfield, 2012; Pickard & Ingersoll, 2016). Indeed, other studies have found that
received support was more strongly correlated with increased well-being when support needs were taken into account (Melrose,
Brown, & Wood, 2015).
Results also demonstrated that although the two types of support have unique associations with stress, they are indeed related
concepts. Received and perceived social support were positively correlated and the strength of association did not significantly vary
according to any demographic and clinical characteristics. Thus, the supportive enacted behaviours and subjective appraisal of
support appear to be related but distinct concepts across child and parent features. This correlation between perceived and received
social support is stronger than reported in the meta-analysis involving the general population (see Haber et al., 2007). It has been
suggested that the relationship between perceived and received support is affected by support needs, and that the strength of as-
sociation should be stronger when there are noted needs (e.g., Cutrona & Russell, 1987; Melrose et al., 2015). Other studies involving
populations with unmeasured but suspected high support needs have reported similarly strong correlations. For instance, parents of
children with congenital heart defects (Kaul & Lakey, 2003), caregivers of individuals with Alzheimers (Lakey et al., 2002), and
survivors of interpersonal trauma meeting diagnostic criteria for posttraumatic stress disorder (Kouky, 2013).
Counter to our hypothesis, neither support moderated the association between child behaviour and parent stress. Thus, the
current study results support a main effect model rather than stress buffering model. Specifically, social support is related to lower
levels of stress, irrespective of child behaviour problems. Social support did not buffer the effects of child behaviour problems on
parent stress. The current study results add to the growing body of literature supporting the main effect model rather than the
buffering model for parents of individuals with autism (Benson & Karlof, 2009; Hastings & Johnson, 2001; Lai, 2013; Tobing &

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Glenwick, 2007). Although the stress-buffering model is prominent in social support literature, it does not appear to be the most
accurate depiction of the social support process for parents of individuals with autism.
Consistent with the existing literature, child behaviour problems were significantly related to higher levels of parent stress.
Research has continually shown that parents of children with autism who have behavioural difficulties are at an increased risk for
poor mental health and high stress (e.g., Davis & Carter, 2008; Lecavalier, Leone, & Wiltz, 2006). Clarifying how these behaviours
impact well-being is particularly important, as behaviour difficulties are frequently reported (e.g., Kanne & Mazurek, 2011;
Lecavalier et al., 2006). It appears that, at least in taking a cross sectional view, although social support is linked to lower levels of
parent stress, it may not help parents mitigate this type of stressor. Instead, caregivers likely require access to formal services and
instrumental assistance to address behaviour problems, through evidence-based interventions and environmental accommodations,
which goes beyond a parent’s informal social support system (Horner, Carr, Strain, Todd, & Reed, 2002). In addition, bolstering
parent resources through interventions may have a positive impact on child behaviour as well. Caregivers may benefit from evidence-
based stress reduction interventions for themselves, such as Acceptance and Commitment Training (Blackledge & Hayes, 2006) and
Mindfulness-Based Interventions (Lunsky et al., 2017). Research suggests that these parent-focused interventions show positive gains
may extend to the child with autism as well (e.g., Neece, 2014).
Interpretation of the findings should take into consideration study limitations. Participants were recruited through community
organizations and a research lab database, and thus parents were likely engaged with autism services or had previously been active in
research activities. Parents were mainly well-educated mothers living in suburban or urban locations and nearly all children were
born in Canada. Further work with more diverse samples and comprehensive recruitment strategies is needed as the current study
results may not generalize to all parents of children with autism. Second, the data were collected through self-report surveys and it is
possible associations among variables are inflated due to shared method variance. Due to our method of data collection, we relied on
parent report of the autism diagnosis source (e.g., pediatrician, psychologist), diagnosis date, and parent report SCQ scores. Although
the SCQ has been found to a valid screener for autism symptoms, in-person diagnostic testing is ideal. Furthermore, this is a cross-
sectional, correlational study at one time point so direction of relationships or causality cannot be confirmed. Lastly, future studies
could examine other dimensions of social support (e.g., social network characteristics, support needs, support from specific sources,
or informal supports compared to formal supports) and explore how these aspects relate to perceptions and receipt of support.
This study adds to our understanding of social support as a construct and clarifies how each facet relates to well-being. The results
suggest that the two types of support do not have the same association with stress when considered together, with perceived support
emerging as having a more important role, at least in terms of having a direct association. Existing social support interventions
typically focus on increasing received support or tangible aid as a mechanism for improving emotional well-being (e.g., Cohen et al.,
2000; Lakey & Lutz, 1996), and the current results suggest that perceived support may have a more robust and direct link to well-
being. Rather than targeting received support in interventions, it may be valuable to consider the cognitive factors that contribute to
the perception of supports. Current study results suggest that it is the belief that support is available and helpful when needed that is
important, rather than simply receiving support from friends and family. This study provides evidence for the benefits of perceived
support, and further work is needed to understand how perceived support is created and activated. This future work would help to
clarify the most effective targets of social support interventions and increase our understanding of perceived social support for
parents of individuals with ASD.

CRediT authorship contribution statement

Suzanne Robinson: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Writing
- original draft, Writing - review & editing. Jonathan A. Weiss: Conceptualization, Supervision, Writing - review & editing,
Methodology, Funding acquisition.

Declaration of Competing Interest

Authors have no actual or potential conflict of interest including any financial, personal or other relationships with other people
or organizations within three years of beginning the submitted work that could inappropriately influence, or be perceived to in-
fluence, their work.

Acknowledgements

The authors would like to thank all the families for their participation in the study. JW was funded by the Chair in ASD Treatment
and Care Research, funded by the Canadian Institutes of Health Research in partnership with Kids Brain Health Foundation, Sinneave
Family Foundation, CASDA, Autism Speaks Canada and Health Canada. SR was funded by Joseph-Armand Bombardier Canada
Graduate Scholarship, Social Sciences and Humanities Research Council. The funding sources had no involvement in study design;
the collection, analysis interpretation of data; the writing of the report; and the decision to submit the article for publication.

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