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Journal of Autism and Developmental Disorders

, Volume 48, Issue 4, pp 1092–1107 | Cite as

Protective Factors Against Distress for Caregivers of a Child with Autism Spectrum Disorder

  • Rebecca A. Lindsey
  • Tammy D. Barry
S.I. : Parenting Children with ASD

Abstract

Caregivers of a child with autism spectrum disorder (ASD) often experience elevated distress. The current study examined potential protective factors against caregiver distress when child externalizing and internalizing behaviors are present: family resources, perceived social support, parenting efficacy, knowledge of ASD, and the agreement between actual and perceived knowledge of ASD. Caregivers of a child with ASD completed an online questionnaire. Results demonstrated main effects for externalizing behavior, family resources, and perceived social support. Significant interactions were found among parenting efficacy and internalizing behavior, and the agreement between actual and perceived knowledge with both externalizing and internalizing behaviors. Results indicate important factors that should be emphasized when working with families of a child with ASD.

Keywords

Caregiver distress Autism spectrum disorder Externalizing behaviors Internalizing behaviors 

Introduction

Current literature recommends involving the entire family in interventions for children with autism spectrum disorder (ASD), as caregiver participation has been found to contribute to child improvement when assessing intervention outcomes (e.g., Kaslow et al. 2012). Further, it is important to examine the wellbeing of caregivers (defined for this study as a parent or primary guardian with whom the child lives), given that parenting a child with a disability is a responsibility often resulting in caregiver burden and elevated distress (Raina et al. 2004). Research has consistently demonstrated that caregivers of a child with ASD report elevated depression, anxiety, and stress (e.g., Montes and Halterman 2007), when compared to caregivers with typically-developing children, developmental disorders other than ASD, and medical disorders (e.g., Estes et al. 2013; Hayes and Watson 2013; Weiss 2002). Caregivers of a child with ASD have been shown to display higher levels of aggravation when parenting and to report more serious challenges related to caring for their child (Schieve et al. 2007).

Understanding how to minimize parental or caregiver distress is important for overall family functioning, as chronic caregiver distress has been associated with many negative outcomes for caregivers including physical health conditions (e.g., Miodrag and Hodapp 2010; Razurel et al. 2013), and psychological concerns (e.g., Phetrasuwan and Shandor Miles 2009). A recent study demonstrated that caregiver stress mediated the relation between ASD symptom severity and maternal psychopathology (Tomeny 2016), suggesting that higher levels of stress can lead to more serious mental health concerns.

Further, research has indicated a link between caregiver distress and decreased child well-being and worsened relationships between caregivers and their children (e.g., Crnic et al. 2005; Farmer and Lee 2011). Additionally, elevated levels of distress have been related to harsh parenting practices, a reduction of constructive discipline (Deater-Deckard 2005), and worse intervention outcomes for children with ASD across intellectual, educational, and behavioral domains (Osborne et al. 2008). Due to the detrimental effect caregiver distress can have on both children and caregivers, evaluating protective factors against distress is a critical step when promoting optimal outcomes for families of a child with ASD.

ASD Symptom Severity and Caregiver Distress

As there is substantial evidence for the elevated distress experienced by caregivers of a child with ASD, research has shifted to exploring factors that are related to and may exacerbate caregiver distress. Several factors have been shown to contribute to caregiver distress, including ASD symptom severity (e.g., Huang et al. 2014; Stuart and McGrew 2009). Specifically, child rigidity, ritualistic and stereotypical behavior, and deficits in social and verbal communication skills have all been related to higher levels of caregiver stress (e.g., Davis and Carter 2008; Lecavalier et al. 2006). Further, some studies have demonstrated that children with ASD have difficulty independently completing tasks of daily living, even when compared to typically-developing children and children with other disabilities (e.g., Gillham et al. 2000; Rodrigue et al. 1991). Deficits in daily living skills have also been shown to contribute to caregiver distress (e.g., Estes et al. 2013; Tomanik et al. 2004). However, some studies have found that ASD symptomatology is not related to higher levels of caregiver distress when accounting for general child behavior problems (e.g., Phetrasuwan and Shandor Miles 2009). Because of these inconsistent and conflicting findings, it is important to explore if and how ASD symptom severity may contribute to caregiver distress.

General Behavior Problems in Children with ASD and Caregiver Distress

In addition to ASD symptom severity, both the externalizing and internalizing behaviors often exhibited by children with ASD contribute to caregiver distress (e.g., Estes et al. 2013; Huang et al. 2014; Rezendes and Scarpa 2011). Behavioral and emotional problems that are secondary to ASD symptomatology are common among children with ASD (e.g., Ming et al. 2008), and some studies have demonstrated that associated child behavior problems are more strongly related to caregiver distress than ASD symptomatology (e.g., Lecavalier et al. 2006). Disciplining children and managing behavior problems also has been strongly related to caregiver stress for mothers of a child with ASD (Phetrasuwan and Shandor Miles 2009).

The relation between problematic behavior and caregiver distress is important to investigate, as child behavior problems and caregiver distress often have a bidirectional relation, with higher distress being linked to more behavior problems, and more frequent problematic behaviors being associated with increased caregiver stress over time (e.g., Neece et al. 2012). As the relation is well established, it is important to investigate potential variables that may moderate this relation. Additionally, a meta-analysis reviewing moderators of intervention outcomes for children with externalizing behaviors found that elevated levels of depression and stress were related to poorer intervention outcomes (Reyno and McGrath 2006). As improvements in child behavior may be partially dependent on caregiver distress, it is important to evaluate protective factors against distress when child behavior problems are present.

Family Resources and Caregiver Distress

Family variables, including a lack of family resources, also contribute to caregiver distress for caregivers of a child with ASD (e.g., Altiere and von Kluge 2009). Family resources are important for families of children with disabilities, as they may allow for greater access to services related to their child and easier access to social support. Currently, few studies (Altiere and von Kluge 2009; Phetrasuwan and Shandor Miles 2009) have explored how limited concrete family resources contribute to parental distress specific for families with a child with ASD, making it an imperative topic to research. A study examining correlates of parental stress in mothers of a child with ASD demonstrated that income was negatively related to parenting stress (Phetrasuwan and Shandor Miles 2009). Additionally, Altiere and von Kluge (2009) interviewed caregivers of a child with ASD and found that families often experience financial difficulties due to the high cost of evaluations and interventions for their child. They found some mothers chose to quit their jobs to stay at home with their child, which furthered their financial strain. In general, lack of family resources contributes to many unwanted outcomes for families such as elevated caregiver stress, less frequent positive parenting behaviors, and lower levels of investment in their child (e.g., Gershoff et al. 2007), making it an important variable to examine.

Perceived Level of Social Support and Caregiver Distress

Perceived social support also has been shown to contribute to caregiver distress for caregivers of a child with ASD. For example, caregivers of children with ASD who had lower levels of social support reported elevated levels of distress and fatigue, which is attributed to the high demands of raising a child with a disability with limited help from others (Giallo et al. 2013). Mothers of children with ASD who have less support from a partner, friends, and family report elevated depression and lower life satisfaction compared to mothers with more social support (e.g., Ekas et al. 2010). Johnson and Simpson (2013) found that single mothers of a child with ASD reported more caregiver stress than married and partnered mothers. However, these single mothers greatly benefited from having a reliable school to which their children could go, showing that multiple types of social support are important for caregivers raising a child with ASD. The relation between social support and caregiver distress has been found in several pediatric populations (e.g., Hassall et al. 2005; Smith et al. 2001). Evaluating social support as a protective factor against caregiver distress specific for caregivers of a child with ASD (i.e., in the context of child factors) may be a critical step toward improving well-being of caregivers and, subsequently, promoting better family outcomes.

Parenting Efficacy and Caregiver Distress

Research has demonstrated that caregiver variables also contribute to the high level of distress commonly experienced by caregivers of a child with ASD. Lower efficacy in caregivers of a child with ASD is related to higher levels of caregiver stress, depression, anxiety, guilt, and fatigue as well as lower levels of agency (e.g., Giallo et al. 2013; Rezendes and Scarpa 2011). Importantly, self-efficacy has been shown to mediate the relation between teacher-reported child behavior problems and maternal anxiety and depression as well as moderate the relation between teacher-reported child behavior problems and paternal anxiety for families with a child with ASD (Hastings and Brown 2002). Low parenting efficacy has been linked to multiple unwanted outcomes including problematic behaviors in children and negative parenting practices such as inconsistent discipline and poor parental monitoring, whereas higher levels of parenting efficacy has been related to positive parenting behaviors (e.g., Jones and Prinz 2005). To date, no known studies have examined if parenting efficacy moderates the relation between caregiver-reported child behaviors and caregiver distress specific for caregivers of a child with ASD. Due to the negative outcomes associated with low parental efficacy and the benefits associated with higher parental efficacy in general, it is important to investigate this factor specifically among families with a child with ASD.

Knowledge of ASD and Caregiver Distress

Currently, little research has examined caregiver knowledge of ASD and its relation with caregiver stress. Studies on other pediatric populations, such as families with a child with attention-deficit/hyperactivity disorder (ADHD), have shown that parents or caregivers having less knowledge of their child’s disorder is a significant predictor of caregiver stress (e.g., Harrison and Sofronoff 2002). Johnson and Simpson (2013) noted that caregivers with a child with ASD may not receive help from their extended family or neighbors because they often lack adequate knowledge about ASD, indicating that having knowledge about ASD is important for caregiving. A study evaluating a parent-directed intervention for caregivers of a child with ASD that included education about ASD, found that the intervention was effective in reducing caregiver stress and also increasing self-efficacy for caregivers (Keen et al. 2010). In one study, caregivers of a child with ASD were surveyed about their knowledge of and beliefs about the causes of ASD (Derguy et al. 2014). Almost half of the sample had inconsistent knowledge and beliefs about ASD, and participants with this inconsistency reported significantly higher levels of anxiety than participants with consistent knowledge and beliefs. As knowledge of ASD and its contribution to caregiver distress has not been widely researched, it is an important topic for further examination.

Research examining knowledge of ASD in populations other than caregivers of children with ASD shows an evident lack of understanding. Gillespie-Lynch and colleagues (2015) found no association between having a relative with ASD and increased knowledge of ASD in a sample of college students. A study measuring both perceived and actual knowledge of ASD in school employees, all of whom worked with children diagnosed with ASD (Williams et al. 2011), found that the employees who reported having average knowledge of ASD actually had low levels of knowledge, indicating that perceived and actual knowledge of ASD may vary. A study by Hansen (2015), testing a measure on knowledge of ASD in a college population, found that actual knowledge and perceived knowledge of ASD were significantly, positively correlated. Additionally, self-efficacy significantly predicted actual knowledge of ASD and having an acquaintance of someone with ASD was related to both actual and perceived knowledge. As caregivers may have different levels of perceived and actual knowledge, it is important to determine not only if actual knowledge is a protective factor against caregiver distress, but also if the agreement between actual and perceived knowledge is a protective factor.

Current Study Rationale and Hypotheses

Overall, research has shown that caregivers of a child with ASD often experience elevated levels of distress, which can lead to multiple unwanted outcomes for both caregivers and children. However, little research has examined what variables serve as protective factors against caregiver distress in the context of child factors (i.e., ASD symptom severity, externalizing behaviors, and internalizing behaviors) specific for families of a child with ASD. Exploring potential protective factors against caregiver distress, even when these child factors are present, may lead to more targeted prevention and intervention efforts for this specific population.

First, the current study examined the relations of ASD symptom severity, child externalizing behaviors, and child internalizing behaviors with caregiver distress for caregivers of a child with ASD. It was hypothesized that externalizing and internalizing behaviors would be positively related to caregiver distress and account for variance above and beyond ASD symptom severity. Additionally, this study investigated variables that may serve as protective factors against caregiver distress: family resources, perceived social support, parenting efficacy, and knowledge of ASD (both actual knowledge and the agreement between actual and perceived knowledge) when accounting for ASD symptom severity. It was hypothesized that the proposed factors would moderate the relations between child behavior and caregiver distress when accounting for ASD symptom severity, such that higher levels of the proposed moderators would attenuate the relations between child behavior problems and caregiver distress.

Method

Participants

Participants were 157 caregivers with one child with ASD from across the United States, representing 38 states in total. Caregivers could have typically-developing children as well; however, caregivers with multiple children with ASD were excluded from the study. Only one caregiver per household completed the study (i.e., no children were duplicated with multiple caregivers).

Caregivers were ages 24 to 53 years, and the majority identified as female (74.5%) and biological parents (96.8%). The majority of caregivers reported being married (68.2%), white (83.4%), and completing between 12 and 20 years of education (M = 15.56; SD = 1.91). The median annual family income range was $55,000–$64,999, and 26.1% reported receiving government assistance. Children were ages 4–11 years, and the majority were identified as male (82.8%) and white (80.3%). All child participants were diagnosed with ASD, Asperger’s, or PDD-NOS. Fifty-three children (33.8%) were reported as having comorbid diagnoses, some with multiple comorbidities. Additional descriptive statistics for the sample are presented in Table 1.

Table 1

Descriptive statistics of the sample

Characteristic

Range

M

SD

Caregiver age

24–53

34.62

5.07

Child age

4–11

7.00

1.80

Characteristic

Caregiver N (%)

Child N (%)

Family N (%)

Gender

 Male

40 (25.5%)

130 (82.8%)

 Female

117 (74.5%)

27 (17.2%)

Race/ethnicity

 White

131 (83.4%)

126 (80.3%)

 Black/African American

8 (5.1%)

7 (4.5%)

 Latino

7 (4.5%)

6 (3.8%)

 American Indian/Alaskan native

1 (0.6%)

5 (3.2%)

 Asian

5 (3.2%)

1 (0.6%)

 Bi/multi-racial

5 (3.2%)

11 (7.0%)

 Missing

1 (0.6%)

Relationship to child

 Biological parent

152 (96.8%)

  Step parent

1 (0.6%)

 Adoptive parent

3 (1.9%)

 Legal guardian

1 (0.6%)

Marital status

 Married

107 (68.2%)

 Separated

20 (12.7%)

 Divorced

18 (11.5%)

 Widowed

2 (1.3%)

 Never married, living alone

5 (3.2%)

 Never married, living w/partner

5 (3.2%)

Household annual income

 $5,000–$9,999

1 (0.6%)

 $10,000–$14,999

3 (1.9%)

 $15,000–$19,999

1 (0.6%)

 $20,000–$24,999

3 (1.9%)

 $25,000–$34,999

16 (10.2%)

 $35,000–$44,999

30 (19.1%)

 $45,000–$54,999

15 (9.6%)

 $55,000–$64,999

15 (9.6%)

 $65,000–$74,999

12 (7.6%)

 $75,000–$84,999

10 (6.4%)

 $85,000–$99,999

12 (7.6%)

 $100,000–$124,999

25 (15.9%)

 $125,000–$149,999

6 (3.8%)

 $150,000–$174,999

2 (1.3%)

 $200,000–$249,999

3 (1.9%)

 $300,000+

2 (1.3%)

 Missing

  

1 (0.6%)

Autism diagnosis

 Autism spectrum disorder

140 (89.2%)

 Asperger’s

13 (8.3%)

 PDD-NOS

4 (2.5%)

Comorbid diagnosesa

 ID

5 (3.2%)

 LD

12 (7.6%)

 ADHD/ADD

22 (14.0%)

 Anxiety

20 (12.7%)

 Depression

5 (3.2%)

 ODD

4 (2.5%)

 Other

30 (19.1%)

 None

104 (66.2%)

M mean, SD standard deviation, PDD-NOS pervasive developmental disorder, not otherwise specified, ID intellectual disability/disorder, LD learning disability/disorder, ADHD attention-deficit/hyperactivity disorder, ADD attention deficit disorder, ODD oppositional defiant disorder

aFifty-three children (33.8%) were reported as having comorbid diagnoses, but some participants had multiple comorbidities. Thus, the number of reported comorbid diagnoses exceeds 53

Measures

Demographic and Diagnostic Form

Each caregiver completed demographic information about themselves, a partner (if applicable), their child with ASD, and other children in the home (if applicable). Information about the child with ASD included comprehensive information about their child’s diagnosis, including diagnostic classification, age of diagnosis, age when symptoms were noticed, and professional(s) that made the diagnosis.

ASD Symptom Severity

The Children’s Social Behavior Questionnaire (CSBQ; Hartman et al. 2006) is a 49-item parent-report questionnaire that assesses ASD symptom severity and associated features for children ages 4–18 years. Items are rated on a 3-point scale (0 = it does not describe the child; 2 = clearly applies to the child). The CSBQ has been shown to have high criterion-related validity with clinical ASD classifications and good agreement with the Autism Diagnostic Interview-Revised (ADI-R) and Autism Diagnostic Observation Schedule (ADOS), suggesting that this measure is capturing ASD diagnostic symptoms (de Bildt et al. 2009). It is also recommended to “be used as a signaling screening, or describing instrument for those with ASD” (de Bildt et al. 2009, p. 1469). For the purposes of this study, the CSBQ Total raw score was used as a criterion check for an ASD diagnosis (CSBQ cutoff ≥ 23; Hartman et al. 2006; Luteijn et al. 2002), and participants below this cutoff were excluded from the study. Additionally, a revised mean (on a 0–2 point scale) of the CSBQ Total score, with two items eliminated due to significant overlap with the measure of child behavior, was used in the actual analyses as the measure of ASD symptom severity. Internal consistency in the current study for the total mean score and revised total mean score were both 0.90.

Child Externalizing and Internalizing Behaviors

The Behavior Assessment System for Children—Parent Rating Scale—Third Edition—Preschool and Child Versions (BASC-3, Reynolds and Kamphaus 2015) is a parent-report measure that assesses emotional concerns, problem behaviors, and adaptability of children ages 2–5 (preschool version) and 6–11 (child version) years. Items are rated on a 4-point scale (0 = Never; 3 = Almost Always). The means (on a 0–3 point scale) of the Externalizing Problems and Internalizing Problems scores were used as the measure of externalizing behaviors and internalizing behaviors, respectively. Alpha coefficients were calculated separately for the two versions of the measure due to different item content included on the scales and composites, yielding an alpha coefficient of 0.80 for the BASC-3 Preschool Version Externalizing Problems, 0.94 for the BASC-3 Preschool Version Internalizing Problems, 0.90 for the BASC-3 Child Version Externalizing Problems, and 0.96 for the BASC-3 Child Version Internalizing Problems.

Caregiver Distress

The Depression, Anxiety and Stress Scale (DASS; Lovibond and Lovibond 1995) is a 42-item scale assessing depression, anxiety, and stress. Items are rated on a 4-point scale (0 = did not apply to me at all; 3 = applied to me very much, or most of the time). The mean (on a 0–3 point scale) DASS Total score was used as the measure for caregiver distress. Internal consistency in the current study was 0.98.

Family Resources

The Family Resource Scale (FRS, Dunst and Leet 1987) is a 31-item measure that assesses the adequacy of concrete resources for families, originally developed for families of children with disabilities. Resources are divided across six domains: basic needs, housing and utilities, benefits, child care, social needs/self care, and extra resources. Items are rated on a 5-point Likert-type (1 = Not at all adequate; 5 = Almost always adequate). The mean (on a 1–5 point scale) of the FRS Total score was used as the measure of family resources. Internal consistency in the current study was 0.94.

Perceived Social Support

The Multidimensional Survey of Perceived Social Support (MSPSS; Zimet et al. 1988) is a 12-item measure that assesses perceived social support from a partner, family, and friends. Items are rated on a 7-point scale (1 = very strongly disagree; 7 = very strongly agree). The mean (on a 1–7 point scale) of the MSPSS Total score was used as the measure of perceived social support. Internal consistency in the current study was 0.95.

Parenting Efficacy

The Parenting Sense of Competence Scale (PSOC; Gibaud-Wallston and Wandersman 1978; Johnston and Mash 1989) is a 17-item self-report that assesses parenting competence. Items are rated on a 6-point scale (1 = Strongly Disagree; 6 = Strongly Agree). The PSOC contains a mother and a father version, which only differ in the words “mother” and “father.” For the current study, the word “parent” was used. This measure contains two different scales: Efficacy, which assesses parenting capability and problem-solving skills, and Satisfaction, which assesses anxiety, motivation, and frustration related to parenting. The Efficacy scale was the variable of interest for the current study. The mean score (on a 1–6 point scale) of the PSOC Efficacy scale was used as the measure of parenting efficacy. Internal consistency in the current study was 0.77.

Knowledge of Autism Spectrum Disorder

A Survey of Knowledge of Autism Spectrum Disorder (ASK-ASD; Hansen 2015) is a 28-item self-report measure that assesses perceived and actual knowledge of ASD. Items are designated as true or false, and then rated on the confidence of the answer on a 3-point scale (1 = Not at all confident; 3 = Very confident). This measure contains Actual and Perceived Knowledge Total scores. The mean (on a 0–1 point scale) of the Actual Knowledge Total score was the variable of interest for measuring caregiver actual knowledge of ASD. A discrepancy score of the absolute difference between a z-score of the mean of the Actual Knowledge Total score and a z-score of the mean of the Perceived Knowledge Total score was used as the measure of agreement, with lower scores indicating more agreement between actual and perceived knowledge. Internal consistency analyses were conducted for the ASK-ASD Actual Knowledge score and Perceived Knowledge score for the current sample, yielding alpha coefficients of 0.86 and 0.87, respectively.

Procedure

Approval from the university Institutional Review Board and informed consent were obtained from all individual participants included in the study before data were collected. Potential participants were provided with study information and specific qualifications for participation. Caregivers were recruited through flyers in communities and clinics, parent and caregiver support groups, online resources, and snowball (referred) sampling techniques. If interested in participating, caregivers of children with ASD contacted the original researcher via email and were given the study link. After survey completion, caregivers received a $10.00 gift card from their choice of Walmart, Target, or Amazon.

A total of 182 caregivers consented to participate in the current study. Thirteen participants were excluded from the study due to a significant amount of missing data, nine participants were excluded because the CSBQ total score was less than 23, and 1 participant retracted the data after submitting the responses. For quality assurance, a total of four bogus items across all measures were used to ensure that caregivers read each item and responded carefully. These quality assurance items required a certain, prescribed response (e.g., “For this question, please select the answer ‘Strongly Agree’,” with the options Strongly Disagree, Disagree, Agree, Strongly Agree). Two participants were excluded for answering more than one quality assurance item incorrectly, leaving a total of 157 caregivers in the final sample.

Results

Preliminary Analyses

All data were examined descriptively and screened for any irregularities or significant outliers; data were cleaned as indicated by this process. Because of their relatively mild skew (Gravetter and Wallnau 2014), the variables were not transformed for analyses. Extreme outliers (i.e., less than or greater than 1.5 times the interquartile range) were winsorized, meaning that the outlier was replaced with the next highest score, keeping rank order (if a measure had multiple extreme values).

ASD symptom severity was a planned covariate to test if child behavior problems related to caregiver distress above and beyond ASD symptom severity. A scale of family income [operationalizing socioeconomic status (SES)], and child gender (coded 0 = female, 1 = male) were significantly correlated with the criterion variable of caregiver distress, r = .19, p = .02, and r = − .21, p = .01, respectively, and therefore were used as covariates in subsequent analyses. Because one participant did not respond to the SES question, the sample size was reduced to N = 156 for the analyses testing hypotheses. All variables of interest (i.e., that were used in subsequent analyses) were examined in a correlation matrix (Table 2). Of specific interest in this table, caregiver distress was significantly positively related to ASD symptom severity and externalizing behaviors in children; however, it was not significantly related to internalizing behaviors in children. Caregiver distress was significantly negatively related to family resources, perceived social support, and parenting efficacy (i.e., higher levels of these family and caregiver variables were associated with lower levels of caregiver distress). Although caregiver distress was not significantly related to actual or perceived knowledge of ASD, it was significantly positively related to the discrepancy between actual and perceived knowledge of ASD (i.e., lower discrepancy was associated with lower levels of caregiver distress).

Table 2

Zero-order correlations among variables of interest (N = 157)

 

1

2

3

4

5

6

7

8

9

10

1. Caregiver distress

0.232**

0.221**

0.121

− 0.511***

− 0.431***

− 0.197*

0.096

0.057

0.179*

2. ASD symptom severity

 

0.507***

0.445***

− 0.097

− 0.159*

− 0.071

− 0.073

0.041

0.178*

3. Externalizing behaviors

  

0.501***

− 0.051

− 0.089

− 0.206*

− 0.298***

− 0.101

0.129

4. Internalizing behaviors

   

0.104

0.050

0.021

− 0.491***

− 0.080

0.031

5. Family resources

    

0.547***

0.081

− 0.314***

− 0.114

− 0.147a

6. Perceived social support

     

0.324***

− 0.372***

− 0.092

− 0.095

7. Parenting efficacy

      

− 0.229**

0.180*

0.066

8. Knowledge of ASD

       

0.293***

− 0.139a

9. Perceived knowledge of ASD

        

− 0.114

10. ASD knowledge discrepancy

         

ASD autism spectrum disorder

aTrend p < .10; *p < .05; **p < .01; ***p < .001

Child Factors

A hierarchical linear regression was conducted to examine whether child behaviors predicted caregiver distress above and beyond ASD symptom severity and the other two demographic covariates (i.e., child gender and SES). In Step 1, all three covariates predicted unique variance in caregiver distress, R 2  = 0.132, F(3, 152) = 7.68, p < .001, including significant unique variance attributed by ASD symptom severity when accounting for the demographics, b = 0.42, SE = 0.13, [95% CI (0.16–0.67)]. In Step 2, there was a significant amount of additional variance in caregiver distress contributed by child behaviors when accounting for covariates, R 2 ∆ = 0.044, F(2, 150) = 3.98, p = .02. Specifically, externalizing behaviors predicted unique variance in caregiver distress, b = 0.31, SE = 0.11, [95% CI (0.09–0.53)], but internalizing behaviors did not, b = − 0.09, SE = 0.09, [95% CI (− 0.25 to 0.08)].

Moderation Analyses

Moderation analyses were conducted in SPSS with 10 moderated multiple regression analyses using the PROCESS tool (Hayes 2013). Prior to conducting analyses, variables were centered (i.e., subtracting the sample mean from each score) to facilitate interpretation of the findings. Covariates (i.e., ASD symptom severity, child gender, and SES) were entered in Step (1) Either child externalizing behaviors or child internalizing behaviors was entered (one per analysis) as the predictor on Step 2, and each hypothesized moderator (one per analysis) was entered as the moderator on Step (2) The interaction term between the given predictor and the given moderator was entered on Step (3) The criterion variable for all analyses was caregiver distress. Confidence interval (CIs) were reported for all variables in the models, and a CI exclusive of zero indicates a significant effect. As indicated in the earlier analysis, Step 1 (control model) was significant across models. Note that potential moderators were examined separately, rather than in one analysis, due to power limitations to test more complex models and a lack of a clear theoretical framework to do so.

Family Resources

Externalizing behaviors and family resources predicted a significant amount of variance in caregiver distress above and beyond covariates, R 2 ∆ = 0.256, F(2, 150) = 31.36, p < .001, with both externalizing behaviors, b = 0.24, SE = 0.09, [95% CI (0.06–0.41)], and family resources, b = − 0.33, SE = 0.05, [95% CI (− 0.41 to − 0.24)], accounting for unique variance (Table 3). When the predictor was internalizing behaviors, only family resources predicted a significant amount of variance in caregiver distress above and beyond covariates, b = − 0.35, SE = 0.05, [95% CI (− 0.44 to − 0.26)] (Table 4). The addition of the interaction term (predictor X family resources) in the third step did not predict unique variance in caregiver distress in either model.

Table 3

Moderated multiple regression examining variables of interest as moderators of the relation between externalizing behaviors and caregiver distress (N = 156)

 

Moderator family resources

95% CI

Moderator perceived social support

95% CI

Moderator parenting efficacy

Outcome: caregiver distress

95% CI

Moderator knowledge of ASD

95% CI

Moderator ASD knowledge discrepancy

95% CI

Control model R2

0.132***

0.132***

0.132***

0.132***

0.132***

 SES

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

 Child gender

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

 ASD

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

Main effects model R 2

0.256***

0.167***

0.049*

0.058**

0.056**

 SES

0.04 (0.01)

0.02 to 0.06

0.03 (0.01)

0.01 to 0.06

0.03 (0.01)

0.01 to 0.06

0.03 (0.01)

0.01 to 0.06

0.04 (0.01)

0.01 to 0.06

 Child gender

− 0.11 (0.09)

− 0.29 to 0.07

− 0.22 (0.09)

− 0.40 to − 0.03

− 0.28 (0.10)

− 0.47 to − 0.08

− 0.28 (0.10)

− 0.48 to − 0.09

− 0.28 (0.10)

− 0.48 to − 0.09

 ASD

0.18 (0.13)

− 0.08 to 0.43

0.13 (0.14)

− 0.15 to 0.40

0.22 (0.15)

− 0.07 to 0.52

0.19 (0.15)

− 0.11 to 0.48

0.18 (0.15)

− 0.11 to 0.47

 EXT

0.24 (0.09)

0.06 to 0.41

0.25 (0.09)

0.07 to 0.44

0.24 (0.10)

0.03 to 0.44

0.33 (0.11)

0.12 to 0.54

0.26 (0.10)

0.06 to 0.46

 Moderator

− 0.33 (0.05)

− 0.41 to − 0.24

− 0.15 (0.03)

− 0.20 to − 0.09

− 0.08 (0.06)

− 0.19 to 0.03

0.37 (0.20)

− 0.02 to 0.76

0.10 (0.06)

− 0.01 to 0.21

Interaction model R 2

0.000

0.001

0.017a

0.001

0.029*

 SES

0.04 (0.01)

0.02 to 0.06

0.03 (0.01)

0.01 to 0.06

0.04 (0.01)

0.01 to 0.06

0.03 (0.01)

0.01 to 0.06

0.03 (0.01)

0.01 to 0.06

 Child gender

− 0.11 (0.09)

− 0.29 to 0.07

− 0.21 (0.09)

− 0.40 to − 0.03

− 0.28 (0.10)

− 0.47 to − 0.08

− 0.29 (0.10)

− 0.48 to − 0.09

− 0.27 (0.10)

− 0.47 to − 0.08

 ASD

0.18 (0.13)

− 0.08 to 0.43

0.12 (0.14)

− 0.15 to 0.40

0.21 (0.15)

− 0.08 to 0.50

0.19 (0.15)

− 0.10 to 0.48

0.15 (0.15)

− 0.14 to 0.44

 EXT

0.23 (0.09)

0.06 to 0.41

0.26 (0.10)

0.07 to 0.45

0.28 (0.11)

0.07 to 0.49

0.32 (0.11)

0.11 to 0.53

0.27 (0.10)

0.08 to 0.47

 Moderator

− 0.32 (0.05)

− 0.42 to − 0.23

− 0.15 (0.03)

− 0.20 to − 0.09

− 0.09 (0.06)

− 0.20 to 0.02

0.35 (0.20)

− 0.05 to 0.75

0.09 (0.06)

− 0.02 to 0.20

 EXT × moderator

− 0.01 (0.10)

− 0.20 to 0.18

0.02 (0.06)

− 0.09 to 0.13

0.21 (0.12)

− 0.02 to 0.44

0.23 (0.50)

− 0.76 to 1.21

0.28 (0.12)

0.04 to 0.51

Socioeconomic status, child gender, and autism symptom severity were used as covariates in all analyses. R 2 and R 2 ∆ statistics are shown in bold for each model. Unstandardized regression coefficients are reported, with standard errors shown in parentheses. The upper and lower 95% confidence intervals are indicated

SES socioeconomic status, ASD autism symptom severity, EXT externalizing behaviors, CI confidence interval

aTrend p < .10; *p < .05; **p < .01; ***p < .001

Table 4

Moderated multiple regression examining variables of interest as moderators of the relation between internalizing behaviors and caregiver distress (N = 156)

 

Moderator family resources

95% CI

Moderator perceived social support

95% CI

Outcome: caregiver distress

Moderator parenting efficacy

95% CI

Moderator knowledge of ASD

95% CI

Moderator ASD knowledge discrepancy

95% CI

Control model R2

0.132***

0.132***

0.132***

0.132***

0.132***

SES

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

Child gender

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

− 0.24 (0.10)

− 0.43 to − 0.04

ASD

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

0.42 (0.13)

0.16 to 0.67

Main effects model R 2

0.237***

0.138***

0.022

0.009

0.020

SES

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.004 to 0.05

0.03 (0.01)

0.004 to 0.05

0.03 (0.01)

0.01 to 0.05

Child gender

− 0.05 (0.09)

− 0.22 to 0.13

− 0.16 (0.09)

− 0.34 to 0.02

− 0.23 (0.10)

− 0.43 to − 0.03

− 0.22 (0.10)

− 0.42 to − 0.02

− 0.23 (0.10)

− 0.43 to − 0.04

ASD

0.26 (0.13)

0.02 to 0.51

0.26 (0.14)

− 0.01 to 0.53

0.38 (0.14)

0.10 to 0.67

0.38 (0.15)

0.09 to 0.67

0.36 (0.15)

0.08 to 0.65

INT

0.11 (0.07)

− 0.03 to 0.25

0.07 (0.07)

− 0.08 to 0.21

0.02 (0.08)

− 0.14 to 0.17

0.07 (0.09)

− 0.12 to 0.26

0.02 (0.08)

− 0.14 to 0.17

Moderator

− 0.35 (0.05)

− 0.44 to − 0.26

− 0.15 (0.03)

− 0.21 to − 0.10

− 0.11 (0.06)

− 0.22 to 0.001

0.29 (0.23)

− 0.17 to 0.74

0.11 (0.06)

− 0.01 to 0.22

Interaction model R 2

0.001

0.000

0.023*

0.006

0.038**

SES

0.04 (0.01)

0.01 to 0.06

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.01 to 0.05

0.03 (0.01)

0.004 to 0.05

0.02 (0.01)

0.001 to 0.05

Child gender

− 0.04 (0.09)

− 0.22 to 0.13

− 0.16 (0.09)

− 0.34 to 0.03

− 0.24 (0.10)

− 0.44 to − 0.05

− 0.23 (0.10)

− 0.43 to − 0.03

− 0.25 (0.10)

− 0.44 to − 0.06

ASD

0.26 (0.13)

0.01 to 0.51

0.26 (0.14)

− 0.01 to 0.53

0.40 (0.14)

0.12 to 0.68

0.38 (0.15)

0.09 to 0.67

0.34 (0.14)

0.06 to 0.63

INT

0.11 (0.12)

− 0.03 to 0.25

0.07 (0.07)

− 0.08 to 0.21

0.02 (0.08)

− 0.13 to 0.18

0.08 (0.09)

− 0.11 to 0.26

0.03 (0.08)

− 0.13 to 0.18

Moderator

− 0.36 (0.05)

− 0.45 to − 0.26

− 0.15 (0.03)

− 0.21 to − 0.09

− 0.09 (0.06)

− 0.21 to 0.02

0.36 (0.24)

− 0.11 to 83

0.10 (0.06)

− 0.01 to 0.22

INT × moderator

0.05 (0.09)

− 0.14 to 0.23

− 0.003 (0.05)

− 0.11 to 0.10

0.21 (0.10)

0.005 to 0.41

− 0.46 (0.44)

− 1.34 to 0.41

0.29 (0.11)

0.07 to 0.50

Socioeconomic status, child gender, and autism symptom severity were used as covariates in all analyses. R 2 and R 2 ∆ statistics are shown in bold for each model. Unstandardized regression coefficients are reported for each moderator. Standard errors are shown in parentheses. The upper and lower 95% confidence intervals are indicated

SES socioeconomic status, ASD autism symptom severity, INT internalizing behaviors, CI confidence interval

*p < .05; **p < .01; ***p < .001

Perceived Social Support

Externalizing behaviors and perceived social support predicted a significant amount of variance in caregiver distress above and beyond covariates, R 2 ∆ = 0.167, F(2, 150) = 17.91, p < .001, with both externalizing behaviors, b = 0.25, SE = 0.09, [95% CI (0.07–0.44)], and perceived social support, b = − 0.15, SE = 0.03, [95% CI (− 0.20 to − 0.09)], accounting for unique variance (Table 3). When the predictor was internalizing behaviors, only perceived social support predicted a significant amount of variance in caregiver distress above and beyond covariates, b = − 0.15, SE = 0.03, [95% CI (− 0.21 to − 0.10)] (Table 4). The addition of the interaction term (predictor × perceived social support) in the third step did not predict unique variance in caregiver distress.

Parenting Efficacy

When accounting for covariates and either predictor, parenting efficacy did not predict unique variance in caregiver distress; only externalizing behaviors demonstrated a significant main effect, b = 0.24, SE = 0.10, [95% CI (0.03–0.44)]. The addition of the interaction term (predictor × parenting efficacy) in the third step did not predict unique variance in caregiver distress when the predictor was externalizing behaviors, but did predict unique variance in caregiver distress when the predictor was internalizing behaviors, b = 0.21, SE = 0.10, [95% CI (0.01–0.41)] (Table 4). A post-hoc reduced-model plot was used to determine the nature of the interaction (Preacher and Hayes 2008; Fig. 1). Caregiver distress was relatively high when parenting efficacy was lower, regardless of the level of internalizing behaviors, b = − 0.01, SE = 0.10, p = .96. When parenting efficacy was higher, caregiver distress was relatively low only when internalizing behaviors were also lower, b = 0.24, SE = 0.10, p = .02.

Fig. 1

Interaction between internalizing behaviors and parenting efficacy predicting caregiver distress

Knowledge of ASD

When accounting for covariates and either predictor, knowledge of ASD did not predict unique variance in caregiver distress; only externalizing behaviors demonstrated a significant main effect, b = 0.33, SE = 0.11, [95% CI (0.12–0.54)]. The addition of the interaction term (predictor × knowledge of ASD) in the third step did not predict unique variance in caregiver distress in either of the interaction models.

When accounting for covariates and either predictor, the discrepancy between actual and perceived knowledge of ASD did not predict unique variance in caregiver distress; only externalizing behaviors demonstrated a significant main effect, b = 0.26, SE = 0.10, [95% CI (0.06–0.46)]. The addition of the interaction term (predictor × ASD knowledge discrepancy) predicted unique variance in caregiver distress when the predictor was externalizing behaviors, b = 0.28, SE = 0.12, [95% CI (0.04–0.51)] (Table 3), and when the predictor was internalizing behaviors, b = 0.29, SE = 0.11, [95% CI (0.07–0.50)] (Table 4).

Post-hoc reduced-model plots were used to determine the nature of these two interactions (Preacher and Hayes 2008; Figs. 2, 3). When the discrepancy between actual and perceived knowledge of ASD was examined as a moderator of the relation between externalizing behaviors and caregiver distress, caregiver distress was relatively low when the discrepancy was smaller, regardless of the level of externalizing behaviors, b = 0.14, SE = 0.11, p = .22 (Fig. 2). However, when the ASD knowledge discrepancy was larger, caregiver distress was lower when externalizing behaviors were lower and higher when externalizing behaviors were higher, b = 0.51, SE = 0.12, p < .001.

Fig. 2

Interaction between externalizing behaviors and ASD knowledge discrepancy predicting caregiver distress

Fig. 3

Interaction between internalizing behaviors and ASD knowledge discrepancy predicting caregiver distress

A similar pattern was revealed when examining ASD knowledge discrepancy as a moderator of the relation between internalizing behaviors and caregiver distress (Fig. 3). Caregiver distress was relatively low when ASD actual and perceived knowledge was less discrepant, regardless of the level of internalizing behaviors, b = − 0.09, SE = 0.10, p = .38. When the ASD knowledge discrepancy was larger, caregiver distress was lower when internalizing behaviors were lower and higher when internalizing behaviors were higher, b = 0.30, SE = 0.10, p = .003.

Post-hoc Exploratory Analysis

Finally, because ASD knowledge discrepancy moderated the relation between both externalizing and internalizing behaviors and caregiver distress, a post-hoc moderated multiple regression analysis was conducted to examine the three-way interaction among these variables. This analysis was considered exploratory because no a priori hypothesis had been made regarding the three-way interaction. This analysis also allowed examination of whether each significant two-way interaction found in the planned analyses held when accounting for the other. With caregiver distress as the criterion variable, covariates (i.e., ASD symptom severity, child gender, and SES) were entered in Step 1; externalizing behaviors, internalizing behaviors, and ASD knowledge discrepancy were entered on Step 2; the three two-way interactions were entered on Step 3; and the three-way interaction was entered on Step 4.

Results indicated that the overall three-way interaction model was significant, R2 = 0.299, F(10, 145) = 6.18, p < .001. The addition of the three-way interaction term (externalizing behaviors X internalizing behaviors X ASD knowledge discrepancy) predicted unique variance in caregiver distress, R 2 ∆ = 0.041, F(1, 145) = 8.49, p = .004, b = 0.78, SE = 0.27, [95% CI (0.25–1.32)]. Furthermore, this analysis indicated that the two-way interactions (i.e., between externalizing behaviors and ASD knowledge discrepancy and between internalizing behaviors and ASD knowledge discrepancy) held as significant when accounting for all main effects and interactions in the larger model, b = − 0.62, SE = 0.31, [95% CI (− 1.23 to − 0.01)] and b = − 0.85, SE = 0.42, [95% CI (− 1.67 to − 0.03)], respectively.

A reduced-model post-hoc plot used to examine the nature of the three-way interaction indicated when externalizing behaviors were less severe, caregiver distress was stable both when the ASD knowledge discrepancy was smaller, b = 0.09, SE = 0.15, p = .63, and larger, b = − 0.009, SE = 0.21, p = .97, regardless of the level of internalizing behaviors (Fig. 4). When externalizing behaviors were more severe and the ASD knowledge discrepancy was smaller, caregiver distress was somewhat lower when internalizing behaviors were lower, and distress was somewhat higher when internalizing behaviors were higher, b = − 0.26, SE = 0.14, p = .06. However, when externalizing behaviors were higher and the ASD knowledge discrepancy was larger, caregiver distress was relatively high regardless of the level of internalizing behaviors, b = 0.19, SE = 0.15, p = .20. Notably, the three-way interaction in the reduced model was only marginally significant (p = .059).

Fig. 4

Interactions among externalizing behaviors, internalizing behaviors, and ASD knowledge discrepancy predicting caregiver distress. A Lower externalizing behaviors. B Higher externalizing behaviors

Discussion

The current study examined potential protective factors against distress for caregivers of a child with ASD. Specifically, this study tested moderators in the relations between externalizing behaviors and internalizing behaviors with caregiver distress, when accounting for ASD symptom severity. Although the results of the current study did not fully support the hypotheses, aspects of the current findings are supportive of the literature on distress for caregivers of a child with ASD.

First, consistent with previous literature (e.g., Huang et al. 2014), externalizing behaviors predicted unique variance in caregiver distress above and beyond the other child factors (i.e., ASD symptom severity and internalizing behaviors) and the demographic covariates; furthermore, externalizing behaviors predicted unique variance in caregiver distress above and beyond covariates and specific family and caregiver characteristics across all moderation models. However, internalizing behaviors did not significantly correlate with caregiver distress nor predict unique variance in distress in any models, contrary to previous literature (e.g., Lecavalier et al. 2006). Thus, the first hypothesis was supported for externalizing behaviors, but not internalizing behaviors, in the prediction of caregiver distress. Although previous literature (e.g., Huang et al. 2014) suggested that child internalizing behaviors would relate to caregiver distress, other studies (e.g., Sikora et al. 2013) have suggested that externalizing behaviors among children with ASD may be more important than internalizing behaviors in consideration of family functioning. It is also the case that internalizing behaviors may relate to caregiver distress only under certain conditions, as suggested by some of the moderation findings of the current study—and discussed further below. Finally, it is noteworthy that ASD symptom severity did not predict unique variance in caregiver distress when accounting for externalizing behaviors, but it did predict unique variance in the majority of models accounting for internalizing behaviors and when only accounting for other covariates.

Importantly, several of the proposed moderating variables were significantly correlated with caregiver distress and predicted unique variance in distress even when accounting for demographic characteristics, ASD symptom severity, and child behavior problems. Family resources consistently predicted unique variance in distress across models with lower levels of family resources being associated with higher levels of caregiver distress, regardless of the level of ASD symptomatology and child behavior problems. This finding suggests that having adequate, concrete resources are critical for caregivers of a child with ASD and is congruent with previous literature that has demonstrated the negative relation between family resources and distress in families (e.g., Smith et al. 2001). Family resources may be particularly important for families that have a child with ASD, as interventions for ASD are often a financial burden (Centers for Disease Control and Prevention 2016) and caring for a child with ASD may prevent or limit a caregiver’s ability to work outside the home (e.g., Altiere and von Kluge 2009).

Notably, there was a wide range of annual family incomes and the median income was less than $65,000. However, this factor was positively correlated with caregiver distress, suggesting that caregivers in this sample with a higher annual household income also have higher levels of distress. This finding is contrary to previous studies on families with a child with ASD, which have largely found that lower family income is related to elevated distress (e.g., Gershoff et al. 2007; Phetrasuwan and Shandor Miles 2009). Interestingly, family income did not significantly correlate with family resources in the current sample.

Higher levels of perceived social support predicted lower levels of caregiver distress, accounting for unique variance across models. These findings suggest that social support is crucial for all caregivers of a child with ASD. Such results indicate that social support should be emphasized in this population, especially when child behavioral problems are elevated. Findings are in line with previous studies as lower levels of social support have been shown to relate to higher levels of distress (e.g., Giallo et al. 2013).

Parenting efficacy did not account for unique variance in caregiver distress above and beyond covariates and child behaviors. However, higher levels of parenting efficacy, in combination with lower levels of internalizing behaviors, were associated with lower caregiver distress. These findings further support previous literature examining the role of parenting efficacy in caregiver distress (e.g., Giallo et al. 2013). That is, although it may not account for significant variance in caregiver distress alone, it provides a condition under which other variables (in this case, child internalizing behaviors) may predict caregiver distress.

Knowledge of ASD did not significantly correlate with caregiver distress, although it was expected for caregivers with higher knowledge of ASD to also report lower levels of distress. To date, little research has examined caregiver knowledge of ASD, but limited studies have speculated that increasing caregiver knowledge about the behaviors of children with ASD leads to decreased caregiver stress (Keen et al. 2010). This relation has been found in other pediatric populations (e.g., Harrison and Sofronoff 2002). Further, research has shown that behavioral knowledge is related to lower levels of negative emotional reactions in educational staff members working with a child with ASD (Hastings and Brown 2002). It is possible that general knowledge of ASD (e.g., knowing information about diagnosing ASD) may not translate into behavioral knowledge and, therefore, may not protect against caregiver distress. Further, it is possible that increased general knowledge of ASD (e.g., knowing that ASD cannot be cured) may be distressing for some caregivers.

This study did find that higher levels of agreement between actual and perceived knowledge of ASD protected against caregiver distress when externalizing and internalizing behaviors are elevated. Furthermore, a more complex follow-up analysis indicated that more severe externalizing behaviors and a larger discrepancy in actual and perceived knowledge were related to higher caregiver distress, regardless of levels of internalizing behaviors. These findings are congruent with previous research investigating ASD knowledge discrepancy in caregivers (e.g., Derguy et al. 2014). Taken together, it may be less important to increase knowledge of ASD and more important to better align caregiver’s perceived knowledge with their actual knowledge, particularly for children with higher levels of externalizing behaviors.

Limitations and Directions for Future Research

This study has several limitations to consider. First, the sample was largely heterogeneous and was comprised primarily of white, biological mothers. Future studies should make efforts to recruit a more diverse sample. Indeed, a recent review article on the reporting and evaluation of ethnicity in ASD research indicates that ethnicity of participants only has been reported in about three out of four published papers on ASD research, has been evaluated in less half of the studies that report it, and has met with serious limitations (e.g., small number of ethnic minorities) when evaluated (Pierce et al. 2014). Given that ethnic differences have been identified in caregiver stress among families with a child with ASD (e.g., higher stress in non-Latino caregivers; Valicenti-McDermott et al. 2015), it is possible that the current study’s findings regarding protective factors against caregiver distress may have differed across ethnic groups. Unfortunately, the small number of ethnic minorities in the current sample (less than 20% across all categories) precluded such an investigation. Relatedly, it should also be noted that the findings for the current study may have been different had the sample been more ethnically or culturally diverse.

Further, as gender differences have been found in caregivers of a child with ASD, specifically regarding caregiver distress (e.g., Kayfitz et al. 2010), future studies should make greater efforts to recruit male caregivers. The present study was also limited by its reliance on parent report. Future studies should consider assessing child behaviors through multiple methods to create a more comprehensive picture of children’s symptomatology and behavioral difficulties. The current study’s cross-sectional design was also a limitation, as no causal relations could be tested. Longitudinal studies are necessary to determine the causal relations among factors and investigate changes in factors over time. Last, this study examined the variables of interest only as moderators in the relations between child factors and caregiver distress. Future research may consider investigating these factors using mediational designs.

Given the significant number of main effects found predicting caregiver distress, future studies should investigate these variables in more detail. For example, it may be beneficial to examine specific types of family resources and social support. Additionally, as ASD knowledge discrepancy was found to moderate the relations between child behavior problems and caregiver distress, future studies may examine caregivers who overestimate knowledge and those who underestimate knowledge. As this study only examined a combination of general distress, future research may consider investigating the relations of factors with each component of distress separately as well as distress specifically related to the caregiver’s relationship with his or her child.

Conclusions

Despite the number of study limitations and only finding limited support for the tested hypotheses, several noteworthy conclusions can be drawn from this study. First, results revealed a number of main effects, indicating child, caregiver, and family factors that should be emphasized when working with caregivers of a child with ASD who are reporting or are at risk for high levels of distress. Due to the increased burden caregivers of a child with a disability often face (Raina et al. 2004), addressing caregiver distress is imperative when promoting better outcomes for caregivers and children. Notably, this study highlighted the complex relations among child, caregiver, and family factors relating to caregiver distress, as evidenced by the number of unique effects attributable to the study variables as well as some significant interaction effects. Gaining a better understanding of the associations between child symptomology and behavior, family factors, and caregiver distress for this clinical population may help clinicians better understand how to work toward achieving better outcomes for both caregivers and their children with ASD.

Notes

Acknowledgments

R. A. Lindsey’s work was supported by the Anthony Marchionne Foundation for the Scientific Study of Human Relations and Psychological Processes Endowed Graduate Summer Research Program at Washington State University and was completed as part of her master’s thesis project.

Author Contributions

RAL conceived of the study, participated in its design and coordination, performed the statistical analyses, and drafted the manuscript; TDB conceived of the study, participated in its design, and drafted the manuscript. All authors read and approved the final manuscript.

Compliance with Ethical Standards

Ethical Approval

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.

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Copyright information

© Springer Science+Business Media, LLC 2018

Authors and Affiliations

  1. 1.Department of PsychologyWashington State UniversityPullmanUSA

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