Parenting stress in autism spectrum disorder may account for discrepancies in parent and clinician ratings of child functioning

Abstract

Elevated parenting stress among parents of children with autism spectrum disorder is well-documented; however, there is limited information about variability in parenting stress and relationships with parent ratings of child functioning. The aim of this study was to explore profiles of parenting stress among 100 parents of young children with autism spectrum disorder enrolled in two clinical trials and potential relationships between parenting stress and parent ratings of child functioning at the baseline timepoint. Secondary aims examined differential patterns of association between parenting stress profiles and parent versus clinician ratings of child functioning. A k-means cluster analysis yielded three different profiles of parenting stress (normal, elevated, and clinically significant) using scores on the Parenting Stress Index–Short Form. One-way analyses of variance revealed differential patterns of parent ratings across the three parenting stress profiles on certain domains of child functioning (e.g. problem behaviors and social impairment) and family empowerment, but similar ratings of child receptive and expressive language abilities. Clinicians blinded to study conditions also rated child functioning, but clinician ratings did not differ by parenting stress profile. Findings emphasize the importance of identifying parenting stress profiles and understanding their relationship with parent ratings, with implications for interpreting parent-report measures and measuring child response in treatment trials.

Lay abstract

Elevated parenting stress among parents of children with autism spectrum disorder is well-documented; however, there is limited information about differences in parenting stress and potential relationships with parent ratings of child functioning. The aim of this study was to explore profiles of parenting stress among 100 parents of young children with autism spectrum disorder enrolled in two clinical trials and to explore relationships between parenting stress level and parent ratings of child functioning before treatment. Secondary aims examined differential patterns of association between parenting stress profiles and parent versus clinician ratings of child functioning. We show that stress may influence parent ratings of certain child behaviors (e.g. problem behaviors) and not others (e.g. language), yet clinician ratings of these same children do not differ. This new understanding of parenting stress has implications for parent-rated measures, tracking treatment outcome, and the design of clinical trials.

Keywords

autism clinician ratings measurement parent ratings parenting stress

Autism spectrum disorder (ASD) has a prevalence rate as high as 1%–3% in the United States affecting 3–9 million families (Christensen et al., 2019). Individuals with ASD may require supports throughout the lifespan (Gerhardt & Lainer, 2011; Jensen & Spannagel, 2011); many of which are organized by parents (Brown et al., 2011; Mulligan et al., 2012). Simultaneously, these parents face unique parenting challenges and elevated, chronic, and ASD-specific stress (Estes et al., 2013; Hayes & Watson, 2013; Johnson et al., 2011; Weitlauf et al., 2014). High parental stress may negatively impact child development and treatment gains, particularly for parent-delivered interventions (Osborne et al., 2008).

It is important to note that experiences of stress are not universal across parents of children with ASD as some parents rate their parenting stress below the clinical cutoff on stress measures (e.g. Parenting Stress Index (PSI)), even though group means fall above this same cutoff (Minjarez et al., 2011, 2013; Stadnick et al., 2015). This differential stress response may suggest stress diversity among parents of children with the same diagnosis. Multiple factors may influence parenting stress including parent personal factors (Estes et al., 2013; McStay et al., 2014; Zaidman-Zait et al., 2017), child problem behaviors (Hayes & Watson, 2013; Walsh et al., 2013; Zaidman-Zait et al., 2014), available supports (e.g. family support groups, psychological services, and childcare options; Hall & Graff, 2011, 2012; Meadan et al., 2010), appropriate coping mechanisms (Lai & Oei, 2014), and severity of child social impairment (Ekas & Whitman, 2010; Huang et al., 2014). Similarly, positive indicators of parent well-being, such as family empowerment, may provide insight into the differential stress response. Only a few studies have explored parenting stress and family empowerment in ASD, but collectively suggest an inverse relationship between these constructs (i.e. higher stress associated with lower family empowerment, vice versa; Brookman-Frazee, 2004; Minjarez et al., 2013). Therefore, continued investigations into this potential relationship are warranted. An enhanced understanding of parenting stress is emerging in the literature; however, this is complicated by measurement challenges and/or models of parenting stress that report it as a singular construct above or below a clinical cutoff (Reed & Osborne, 2013). Many aspects of parenting stress in ASD remain unclear including stress diversity, potential influence on parent ratings of their children, and discrepancies between raters (parents vs clinicians) in conceptualizing a child’s abilities. These may be important factors to understand given parent participation in early interventions for children with ASD.

Parents of children with ASD engage in many aspects of early interventions including parent training and providing parent ratings of treatment outcome. Parent training can result in greater treatment efficacy among children (Nevill et al., 2018; Oono et al., 2013) and parent-rated measures are routinely used to assess treatment efficacy (Gengoux et al., 2015, 2019; Gulsrud et al., 2015; Hardan et al., 2015; Schreibman et al., 2015). These critical components are also dependent upon parents who face unique parenting challenges and elevated stress. Greater understanding of the relationship between parenting stress and ratings on standardized measures is critical for accurate interpretation of these tools both as predictors of treatment response and outcome measures in clinical trials.

Several studies reported significant discrepancies between parent, teacher, and clinician ratings of the same child with ASD in certain domains (e.g. problem behaviors and autism symptomology), yet other domains (e.g. language and adaptive skills) appear similar across raters (Rowberry et al., 2014; Rubenstein et al., 2017; Stadnick et al., 2017). Parents, teachers, and clinicians play distinct and integral roles in the child’s life and each observes the same child in different contexts, which highlights the importance of understanding potential differences in observations across raters. Differences may be crucial in enhancing screening efforts in ASD and elucidating treatment targets. In parent ratings, parenting stress has been identified as an important variable contributing to divergent ratings (Osborne et al., 2008; Reed & Osborne, 2013). Although caregiver report is the most common measure of change in pediatric psychiatry, a recent study found that parents reported treatment gains in their child following an 8-week observation period in which no active intervention was administered (Jones et al., 2017). These placebo-like effects on parent ratings represent significant challenges for randomized controlled trials (RCTs) that utilize parent ratings to measure treatment outcome (Jones et al., 2017). Viewing the child in a different context, teachers tend to provide ratings of child problem behaviors in a manner similar to clinicians blind to study conditions, but divergent from ratings provided by parents (Azad et al., 2016; Lane et al., 2013; Reed & Osborne, 2013; Stratis & Lecavalier, 2017). Similarly for ratings of child autism symptomology, several studies suggest discrepancies between teacher and parent ratings (Azad et al., 2016; Stratis & Lecavalier, 2017), while teacher ratings align more closely to clinician ratings (Azad et al., 2016). In terms of social functioning, studies on rater agreement between parents and teachers appear mixed (Foley Nicpon et al., 2010; Lopata et al., 2016; Murray et al., 2009) with some behaviors (e.g. initiations) dependent upon rater and social context (Murray et al., 2009).

In contrast, higher inter-rater agreement occurred between parents and teachers on ratings of child language abilities (Kwok et al., 2015; Nordahl-Hansen et al., 2013; Volden & Phillips, 2010) and child adaptive skills (Lane et al., 2013). Discrepancies may be accounted for by time scales involved in procuring ratings as well as the different contexts in which ratings are collected across raters. Rater differences are crucial to not only support the use of multi-method, multi-informant assessments in treatment trials but also to understand how parent perceptions of child behavior may affect early interventions. To date, no studies, to our knowledge, have explored discrepancies in the patterns of associations between parenting stress profiles and parent and clinician ratings of the same children with ASD, which is an important step to elucidating the role of parenting stress in measurement.

The goal of this study was to examine diversity of baseline parenting stress among 100 parents of children with ASD presenting for parent training across two completed RCTs of Pivotal Response Treatment (PRT; Gengoux et al., 2019; Hardan et al., 2015). The primary aim was to explore profiles of parenting stress and potential relationships with available baseline parent ratings of child functioning in domains such as child problem behavior, social ability, and language. While direct comparisons between parent and clinician ratings could not be made since clinicians completed different measures of problem behavior, social ability, and language, a secondary goal of the study was to examine differential patterns of association between parenting stress profiles and clinician ratings across available clinician-rated indices of child functioning. We hypothesized that elevated parenting stress would be associated with higher parent-rated problem behaviors and social impairment, yet parent ratings of child language abilities may not differ across parenting stress profiles. In addition, we hypothesized that differential patterns of association between parenting stress profiles and parent ratings would emerge, but clinician ratings would not differ across stress profiles.

Methods

Study design

This study analyzed baseline data from 100 parents of young children (2–6 years old) with ASD who were enrolled in two completed RCTs of PRT (Gengoux et al., 2019; Hardan et al., 2015). The present sample of 100 parents (80 female and 20 male; mean age=38.72 yeras) was comprised of 52 participants from the first RCT (Hardan et al., 2015) and 48 participants from the second RCT (Gengoux et al., 2019). Community stakeholders were not involved in this study.

Participants

Participants in both RCTs included children: (1) diagnosed with autism based on the Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria, and confirmed by administration of the Autism Diagnostic Interview - Revised (ADI-R; Lord et al., 1994), Autism Diagnostic Observation Schedule (ADOS; Lord et al., 2000), and by expert clinical judgment, and (2) communication-delayed on the Preschool Language Scale -Fourth Edition (PLS-4; Zimmerman et al., 2002; 2- and 3-year olds were ≥1 standard deviation (SD) below the age level, 4-year olds were ≥2 SDs, and 5- to 6-year olds were ≥3 SDs). Parents were English-speaking and available to participate in parent training. In the first RCT, participating children were 2–6 years old and able to vocalize with intent when prompted by a clinician during the screening visit (Hardan et al., 2015). In the second RCT, children were 2–5 years old and there was no minimum communication ability required for enrollment (Gengoux et al., 2019). Exclusion criteria for both RCTs were children with: (1) individual speech therapy for more than 60 min a week, (2) comorbid severe psychiatric disorder, (3) genetic abnormality and (4) active medical problems. No changes in inclusion or exclusion criteria were applied during the two trials.

The total sample included 100 parents (20 fathers and 80 mothers) of children with ASD between 2 and 6 years old (mean age (M) = 2.98 and SD = 1.75) of diverse ethnicities, marital status, education, and socioeconomic backgrounds (see Table 1). The majority (94%) of all participating children were in school and placed in special day classes (76%) for an average of 19 h of school per week. The majority of all children were receiving weekly applied behavior analysis (ABA) (69%; M = 9.02 h per week) and speech therapy (94%; M = 56.4 min per week).

Table 1.

Characteristics of parents and children.

	M (SD)
Child characteristics
Age (years)	2.98 (1.75)
Sex	82 male/18 female
Ethnicity	13 Hispanic/Latinx87 Not Hispanic/Latinx
Race	2 American Indian/Alaska Native51 Asian1 Hawaiian35 Caucasian11 Other
School (h/week)	19.08 (8.27)
ABA (h/week)	9.02 (7.95)
Speech therapy (min/week)	56.4 (5.4)
Parent characteristics
Age (years)	38.72 (4.39)
Sex	20 male/80 female
Ethnicity	15 Hispanic/Latinx85 Not Hispanic/Latinx
Race	1 American Indian/Alaska Native52 Asian1 Hawaiian32 Caucasian14 Other
Highest education	14 partial college31 college55 graduate school
Work (h/week)	19.42 (19.2)
Gross family income	US $100–US $150,000

M: mean; SD: standard deviation; ABA: applied behavior analysis.

Procedures

Recruitment for the first RCT occurred over 24 months (July 2010–June 2012), and recruitment for the second RCT occurred over 32 months (December 2013–July 2016). Participants in both trials were recruited through distribution of fliers at clinics and autism awareness events, referrals by local professionals, and word of mouth. After the participant’s parent provided informed written consent in each trial, comprehensive evaluations were conducted including review of medical/psychiatric history and completion of psychological assessment batteries and parent-rated questionnaires. Both RCTs were approved by the Stanford University Institutional Review Board, and the data were managed using REDCap electronic data tools (Harris et al., 2009) hosted at the Stanford University Center for Clinical Informatics. Community members were not involved in the RCTs.

Measures

Primary measure

Parenting stress

To measure parenting stress, parents in both trials completed the Parenting Stress Index–Short Form, Third Edition (PSI-SF; Abidin, 1995) at the baseline study visit. The PSI-SF is a self-report questionnaire of 36 items that measures total parenting stress and raw scores are converted to standardized percentiles with percentiles ⩾85% indicating clinically significant parenting stress. Expanded cutoffs were recommended for the PSI-SF such that percentiles 15%–80% fall in the normal range, 81%–90% fall in the elevated range, and 91%–100% fall in the clinically significant range (Abidin, 1995). Total stress percentile scores of the PSI-SF were used to identify potential parenting stress profiles in this study. To explore diversity in parenting stress, the established cutoffs of the PSI-SF were not used, and instead, natural groupings of scores based on a k-means cluster analysis were explored.

Secondary measures

Child problem behaviors

Parent ratings of child problem behaviors were measured using the raw scores of the Aberrant Behavior Checklist (ABC; Aman et al., 1985) and the following scores from the Vineland Adaptive Behavior Scales–Second Edition (VABS-II; Sparrow et al., 1984): standard score on the maladaptive behavior domain and v-scale scores of the internalizing and externalizing subscales. Internal consistency values for the ABC ranged from acceptable to excellent (irritability = 0.92, lethargy/social withdrawal = 0.88, stereotypic behavior = 0.86, hyperactivity/noncompliance = 0.93, and inappropriate speech = 0.73) in a recent study of youth with ASD (Norris et al., 2019). Similarly, the Cronbach’s alpha values of the VABS were high in a sample of individuals with diverse developmental disabilities (communication = 0.98, daily living skills = 0.98, socialization = 0.97, and Vineland total = 0.99; de Bildt et al., 2005). The VABS accounts for child age in the calculation of norm-referenced standard scores.

Clinician ratings of child problem behaviors were measured using severity ratings of the maladaptive behavior subscale of the Clinical Global Impression Scale–Severity Subscale (CGI-S; Guy, 1976). The CGI was completed by an expert clinician to estimate the severity of the child’s behaviors at the time of assessment and children were assessed on a 7-point Likert-type scale with ratings ranging from “1—normal” to “4—moderately ill” to “7—extremely ill.” The CGI has been used in several clinical trials in ASD and found to be a reliable estimate of severity of symptoms (Bearss et al., 2015; King et al., 2009; McCracken et al., 2002).

Child social impairment

Parent ratings of child social impairment were measured using the T-scores of the Social Responsiveness Scale (SRS; Constantino, 2012; Constantino et al., 2003) and the following VABS-II scores: standard scores of the socialization domain and v-scale scores of the three subscales (interpersonal relationships, play and leisure skills, and coping skills). The SRS is a quantitative measure of autistic traits with high inter-rater reliability (0.75–0.91 for all subscales; Constantino et al., 2003). The SRS (Constantino et al., 2003) was completed by parents in the first RCT, while the SRS-2 (Constantino, 2012) was completed by parents in the second RCT. Clinician ratings of child social impairment were measured using scores from the ADOS, which was administered by research-reliable clinicians to all participants as a screening measure in both RCTs. Intraclass correlation coefficients for the ADOS are high (range = 0.82–0.93 for all domains; Lord et al., 2000).

Child language abilities

Parent ratings of child language abilities were measured with raw scores of the MacArthur-Bates Communicative Development Inventories (CDI; Fenson et al., 1993) Words and Gestures and Words and Sentences versions and the following VABS-II scores: standard scores of the communication domain and v-scale scores of the receptive and expressive subscales. The Cronbach’s alpha values of the MacArthur CDI ranged from 0.826 to 0.984 for children with language delays (Skarakis-Doyle et al., 2009). Clinician ratings of child language abilities were measured using the standard scores of the PLS-4 and the frequencies of child functional utterances during the Structured Laboratory Observation (SLO). The total number of functional utterances, and the spontaneous type of utterance, were analyzed in this study. For additional information on SLO procedures, please see Hardan et al. (2015). The PLS-4 accounts for child age in the calculation of norm-referenced standard scores.

Child developmental level

The Mullen Scales of Early Learning (MSEL; Mullen, 1995) was administered to all children as a screening measure in both RCTs. Developmental quotients (DQs) were calculated using the MSEL age equivalent divided by chronological age to yield an estimate of verbal DQ (based on Receptive and Expressive Language subscale scores), nonverbal DQ (based on Visual Reception and Fine Motor subscale scores), and a full-scale DQ (based on performance across the four subscales). High convergent validity was reported between the MSEL and similar indices of developmental functioning (range = 0.76–0.82) in a sample of youth with ASD (Bishop et al., 2011).

Parental empowerment

Parents completed the Family Empowerment Scale (FES; Koren et al., 1992) to provide ratings of parental empowerment at the family, service system, and community/political levels. The FES contains 34 items and raw scores per subscale range from 12 to 60 with higher scores reflecting higher empowerment. Internal consistency estimates of the FES subscales range from 0.78 to 0.89, and the split-half estimate of reliability was 0.93 (Singh et al., 1995).

Statistical analyses

Independent samples t-tests and Kruskal–Wallis H tests (e.g. gross family income and highest education level) were employed to assess differences on parent and child demographic variables across parenting stress profiles and to identify potential covariates. To examine the first hypothesis that distinct profiles of parenting stress exist among parents of children with ASD, a k-means cluster analysis was performed using the PSI-SF total percentile score. The k-means cluster analysis is a widely used type of analysis used to sort cases into groups (i.e. clusters) based on strong associations within members of the same cluster, and weak associations between members of different clusters (Milligan & Romesburg, 1985; Scott & Knott, 1974). In this study, a k-means cluster analysis was utilized to sort cases based on their relative distance from cluster means using an algorithm. Specifically in ASD, cluster analysis has been employed to identify sub-groups of individuals (Eaves et al., 1994; Schwartzman et al., 2016; Wiggins et al., 2012). Clusters of parenting stress were determined by the results of the k-means cluster analysis, rather than the recommended cutoffs of the PSI-SF, in order to explore parenting stress diversity in this sample. Following the k-means cluster analysis, parenting stress scores were then grouped by the recommended PSI-SF cutoff scores (15%–80% normal, 81%–90% elevated, and 91%–100% clinically significant) to assess similarities or differences between cluster scores and established cutoff scores (Abidin, 1995). Differences in group membership between cluster scores and established cutoff scores were assessed by totaling the number of parents with differing scores (e.g. cluster membership in normal range and recommended cutoff in elevated range).

In order to examine the second hypothesis that a relationship may exist between distinct stress profiles (i.e. clusters) and parent ratings, one-way analyses of variance (ANOVAs) were employed using the identified stress clusters as the independent variable and parent ratings of problem behaviors (ABC), social impairment (SRS), maladaptive behaviors (VABS), language (MacArthur CDI), and empowerment (FES) at baseline as dependent variables. To examine differential patterns of association between parenting stress profiles and clinician ratings, one-way ANOVAs were again employed using the identified stress clusters as the independent variable and clinician ratings of social impairment (ADOS), language (PLS-4 and SLO) and developmental ability (Mullen) as the dependent variables. Two-tailed tests were employed to test statistical significance, which was defined by p-values < 0.05. Post hoc t-tests were employed to examine differences in scores between the three clusters, and to correct for multiple comparisons, Bonferroni adjustments were applied. Finally, a Kruskal–Wallis H test was run to determine if there were differences in CGI-S maladaptive behavior scores between the three parenting stress profiles.

Results

Distinct profiles of parenting stress

A total of 100 parents completed the PSI-SF at baseline with an average percentile score of 75.51 (SD = 30.1; range = 5–100) for total stress, which is a group mean in the normal range. A three-cluster solution emerged as the best solution after reiterating the k-means cluster analyses using between three and seven group solutions (see Table 2). The three distinct clusters that emerged were significantly different from each other (p < 0.001): Cluster 1 reported the lowest stress percentiles with a group mean in the normal range (i.e. normal stress cluster), Cluster 2 reported higher stress percentiles with a group mean in the elevated range (i.e. elevated stress cluster), and Cluster 3 reported the highest stress percentiles with a group mean in the clinically significant range (i.e. clinically significant stress cluster). There were no significant differences on any parent or child demographic variables reported in Table 1 across the parenting stress profiles (p > 0.05). Comparison of group membership by cluster score and established cutoff score (Abidin, 1995) demonstrated that 96 parents exhibited similar membership across the scoring indices (i.e. parents in both the normal stress cluster and normal range on the recommended cutoff).

Table 2.

Characteristics of parenting stress profiles.

	Cluster 1 Normal Stresss (n = 40)	Cluster 2 Elevated Stresss (n = 23)	Cluster 3 Clinically Significant Stress (n = 37)
	M (SD)	M (SD)	M (SD)	F	p
PSI-SF (percentile)
Total stress	44.6 (26.2)^a	88.8 (2.2)^a	98.1 (2.0)^a	108.3	<0.001
Parental distress	27.6 (23.5)^a	60.2 (27.3)^a	83.5 (18.0)^a	59.96	<0.001
Parent–child dysfunctional interactions	57.8 (24.5)^a	81.6 (19.1)^a	93.1 (12.0)^a	32.26	<0.001
Difficult child	50.2 (29.7)^a	83.9 (13.5)^a	95.3 (5.3)^a	50.53	<0.001
Child demographics
Age (years)	2.71 (1.7)	2.68 (1.6)	3.44 (1.9)	1.920	0.153
Gender	82.5% male	71.4% male	86.8% male	H = 2.16	0.340
School (h/week)	19.9 (9.4)	18.3 (6.7)	18.5 (8.2)	0.326	0.723
ABA (h/week)	9.48 (9.5)	9.75 (6.8)	8.19 (5.7)	0.405	0.669
Speech therapy (min/week)	106.3 (28.6)	102.4 (15.5)	103.7 (22.4)	0.714	0.494
Parent demographics
Age (years)	38.6 (4.6)	38.5 (5.2)	39.0 (4.1)	0.071	0.931
Gender	Median = female	Median = female	Median = female	H = 3.84	0.146
Highest education	Median = college	Median = graduate	Median = college	H = 1.12	0.572
Work (h/week)	20.6 (18.7)	22.7 (21.6)	16.5 (17.7)	1.052	0.355
Gross family income	Median = US$100–US $150,000	Median = US$150–US$200,000	Median = US$100–US$150,000	H = 2.92	0.318

M: mean; SD: standard deviation; PSI-SF: Parenting Stress Index–Short Form, Third Edition; ABA: applied behavior analysis.

Mean values with the same superscript differ significantly from each other at the 0.05 level (two-tailed).

Bolded font indicates the significant group-level differences (p < 0.05).

Parent-report measures compared across parenting stress profiles

Table 3 presents parent ratings at baseline across the three stress profiles. Significant group differences emerged across the parenting stress profiles for parent ratings of total child problem behaviors on the ABC and the subscales of irritability, social withdrawal, hyperactivity, and stereotypic behaviors. However, no significant differences emerged for parent ratings of inappropriate speech on the ABC (p = 0.136). With regard to maladaptive behaviors on the VABS-II, there were also significant group differences with the highest ratings by Cluster 3, medium ratings by Cluster 2, and the lowest ratings by Cluster 1. In addition, significant differences in parent ratings of child social impairment on the SRS emerged across the parenting stress profiles with the lowest severity ratings in the mild range on the SRS among Cluster 1, the medium severity ratings in the moderate range among Cluster 2, and the highest severity ratings in the severe range among Cluster 3.

Table 3.

Parent ratings at baseline across parenting stress profiles.

	Cluster 1 Normal stress (n = 40)	Cluster 2 Elevated Stress (n = 23)	Cluster 3 Clinically Significant stress (n = 37)
	M (SD)	M (SD)	M (SD)	F	p
ABC
Irritability	4.52 (4.0)^a	6.98 (3.4)^a	13.4 (8.7)^a	13.282	<0.001
Social withdrawal	7.1 (3.2)^a	10.2 (5.2)^a	15.2 (8.2)^a	12.613	<0.001
Hyperactivity	10.3 (3.5)^a	14.8 (4.9)^a	20.5 (5.2)^a	5.627	0.005
Inappropriate speech	1.70 (1.7)	1.86 (1.8)	2.70 (2.9)	2.039	0.136
Stereotypic behaviors	2.55 (1.3)^a	4.20 (1.2)^a	5.57 (3.8)^a	3.451	0.036
SRS (T-scores)
Total	65.7 (9.6)^a	74.2 (6.7)^a	81.9 (9.4)^a	10.704	<0.001
Social communication and interaction	65.1 (8.4)^a	72.4 (7.2)^a	78.8 (7.3)^a	9.468	<0.001
RRB	62.2 (8.2)^a	72.1 (6.3)^a	79.9 (6.9)^a	11.25	<0.001
VABS-II
Adaptive behavior composite	69.5 (9.6)	68.7 (9.8)	66.9 (11.2)	0.600	0.551
Communication	68.1 (14.2)	66.1 (15.2)	68.2 (15.9)	0.147	0.864
Receptive	8.39 (2.7)	7.67 (2.7)	8.72 (2.7)	1.010	0.368
Expressive	7.53 (2.3)	7.43 (1.8)	7.61 (2.5)	0.043	0.958
Daily living	71.0 (13.1)	68.0 (11.4)	68.6 (11.9)	0.530	0.591
Personal	9.66 (2.0)	9.29 (2.4)	9.28 (2.1)	0.354	0.703
Domestic	10.9 (2.1)	10.6 (1.8)	10.9 (2.0)	0.223	0.800
Community	10.6 (3.3)	9.90 (2.2)	9.69 (3.0)	0.875	0.420
Socialization	70.2 (9.5)	66.6 (3.4)	63.4 (7.2)	2.886	0.061
Interpersonal relationships	8.49 (2.0)	7.86 (2.2)	6.31 (2.0)	3.056	0.052
Play and leisure	9.36 (2.5)^a	8.71 (1.5)^a	7.86 (2.4)^a	3.976	0.022
Coping skills	11.3 (2.2)	11.1 (2.3)	10.8 (2.6)	0.418	0.660
Motor	81.2 (12.3)	83.5 (12.1)	78.6 (15.1)	0.894	0.413
Maladaptive behaviors	18.4 (2.2)^a	20.3 (1.2)^a	22.8 (0.9)^a	3.383	0.039
Internalizing	18.9 (2.2)^a	20.5 (1.1)^a	22.9 (1.2)^a	6.403	0.003
Externalizing	15.5 (1.1)^a	17.3 (0.8)^a	19.4 (1.1)^a	3.115	0.050
M-CDI
W&G: words produced out of 396	129.5 (121.7)	108.4 (114.5)	108.9 (112.3)	0.374	0.689
W&S: words produced out of 680	149.3 (153.0)	141.1 (140.2)	163.9 (159.2)	0.168	0.845
FES
Family	50.4 (4.1)^a	46.5 (5.8)^a	42.1 (3.4)^a	11.23	<0.001
Service system	50.6 (4.0)^a	47.1 (3.5)^a	43.2 (2.9)^a	3.168	0.047
Community/political	33.3 (6.2)	30.2 (6.7)	30.0 (7.1)	1.770	0.210

SD: standard deviation; ABC: Aberrant Behavior Checklist; SRS: Social Responsiveness Scale; VABS-II: Vineland Adaptive Behaviors Scale–Second Edition; M-CDI: MacArthur-Bates Communicative Development Inventories; FES: Family Empowerment Scale; RRB: restricted and repetitive behavior.

Mean values with the same superscript differ significantly from each other at the 0.05 level (two-tailed).

Bolded font indicates significant the group-level differences (p < 0.05).

In addition, there were no significant differences in parent ratings of child receptive and expressive language on the VABS-II across the three parenting stress profiles. Similarly, parent ratings on the MacArthur CDI forms were not significantly different. In terms of other adaptive skills on the VABS-II, there were no significant group differences on parent ratings of daily living and motor skills across the parenting stress profiles. However, parent ratings of child play and leisure skills were significantly different such that the highest ratings were provided by Cluster 1 (normal stress), the medium ratings by Cluster 2 (elevated stress), and the lowest ratings by Cluster 3 (clinically significant stress).

Divergent ratings emerged at the family and service system levels of empowerment on the FES with parents in Cluster 1 (normal stress) reporting the highest empowerment, parents in Cluster 2 (elevated stress) reporting the medium empowerment, and parents in Cluster 3 (clinically significant stress) reporting the lowest empowerment. There were no significant differences across clusters in empowerment at the community/political level (p = 0.210).

Clinician-rated measures compared across parenting stress profiles

In contrast to the pattern observed in parent ratings, clinician ratings of child maladaptive behaviors (CGI-S) and severity of social impairment (ADOS) including total, social affect, and restricted and repetitive behavior (RRB) scores were similar across the parenting stress profiles (see Table 4). In terms of language, clinicians provided similar ratings of child abilities in auditory comprehension (p = 0.384) and expressive communication on the PLS-4 (p = 0.670) and, like parents, clinician ratings did not vary in relation to parenting stress profile. Similarly, there were no differences in clinician ratings for total functional utterances (p = 0.805) and spontaneous utterances (p = 0.287) on the SLO. Furthermore, clinician ratings of child cognitive abilities on the MSEL—full-scale (p = 0.830), nonverbal (p = 0.852), and verbal DQ (p = 0.789)—did not differ across the parenting stress profiles.

Table 4.

Clinician ratings at baseline across parenting stress profiles.

	Cluster 1 Normal Stress (n = 40)	Cluster 2 Elevated Stress (n = 23)	Cluster 3 Clinically Significant Stress (n = 37)
	M (SD)	M (SD)	M (SD)	F	p
CGI-S
Maladaptive behaviors	Median = 5.00^a	Median = 5.00^a	Median = 5.00^a	H = 0.56	0.756
ADOS
Total	19.6 (4.4)	20.5 (3.1)	19.4 (4.2)	0.373	0.690
Social affect	15.2 (3.6)	16.0 (1.5)	15.0 (3.0)	0.506	0.605
RRB	4.43 (2.0)	4.53 (2.2)	4.38 (2.1)	0.025	0.975
PLS-4 (standard scores)
Total	55.5 (6.5)	56.1 (9.8)	56.8 (9.6)	0.230	0.795
Auditory comprehension	54.5 (6.4)	55.8 (11.1)	57.5 (11.1)	0.968	0.384
Expressive communication	61.4 (9.6)	61.0 (10.2)	59.4 (11.0)	0.403	0.670
SLO
Total functional utterances	46.7 (25.2)	48.3 (22.5)	44.0 (26.9)	0.217	0.805
Spontaneous utterances	1.20 (3.5)	0.48 (1.2)	0.39 (0.9)	1.264	0.287
MSEL
Full-scale DQ	48.6 (16.1)	48.5 (18.1)	50.6 (16.0)	0.186	0.830
Verbal DQ	42.7 (20.9)	41.4 (19.8)	44.3 (18.8)	0.161	0.852
Nonverbal DQ	54.5 (13.9)	55.6 (19.0)	56.9 (15.3)	0.238	0.789

M: mean; SD: standard deviation; CGI-S: Clinical Global Impression–Severity Subscale; ADOS: Autism Diagnostic Observation Schedule; PLS-4: Preschool Language Scales–Fourth Edition; SLO: Structured Laboratory Observation; MSEL: Mullen Scales of Early Learning; DQ: developmental quotient.

Score of five corresponds to “Markedly Ill” level of severity.

Significant differences in clinician ratings did not emerge across the profiles.

Discussion

Although parents of children with ASD play vital roles in early interventions, they experience elevated stress that may inadvertently influence parent-rated measures. This study explored parenting stress among 100 parents of children with ASD and observed distinct parenting stress profiles, even among parents of children with the same diagnosis presenting for the same treatment. Significant relationships between parenting stress profiles and parent-rated measures were observed in certain domains (e.g. problem behaviors, social impairment, and parental empowerment), but not others (e.g. language and daily living skills). While parent ratings of problem behaviors and social impairment differed according to parent stress profile, available clinician-rated measures of these same functional areas (problem behaviors and social impairment) did not differ across the three clusters. Like parents, available clinician-rated measures of language ability did not differ by parent stress profile. Findings suggest that the level of parenting stress might affect parent ratings of child problem behaviors, social impairment, and parental empowerment, but not parent ratings of child language and daily living skills. These findings have important implications for researchers and clinicians working with parents of children with ASD and utilizing parent-rated measures to track treatment efficacy.

Findings from this study suggest that the experience of parenting stress may be diverse across parents of children with the same diagnosis and similar needs. Interestingly, the cluster analyses identified three unique profiles of parenting stress with group means similar to clinical cutoffs for the PSI-SF such that the mean of Cluster 1 fell in the normal range, Cluster 2 fell in the elevated range, and Cluster 3 fell in the clinically significant range. When comparing group membership by mean cluster scores and established PSI-SF cutoff scores (Abidin, 1995), 96 parents exhibited similar membership (i.e. parents in both the normal stress cluster and normal range on the established cutoff). These findings may further validate the cutoffs identified in the present investigation instead of a dichotomous structure of at or below 85%. This expanded approach may better capture the range of treatment needs and enhance characterization of parenting stress within and across populations (Barroso et al., 2016; Reed & Osborne, 2013). It would be important for future studies of parenting stress to consider an approach using the expanded cutoffs for parenting stress, particularly when trying to identify variables that may influence parenting stress.

With regard to parent ratings of child functioning, it appears that problem behaviors and social impairment differed depending on a parent’s stress profile, yet ratings of language and adaptive skills were less influenced by stress. Specifically, parent ratings of child problem behaviors (ABC and VABS-II) and social impairment (SRS and VABS-II) exhibited a unique, graded pattern depending upon stress profile—the highest stress and most negative parent ratings, the medium stress and medium parent ratings, and the lowest stress and most positive parent ratings. Ratings of child inappropriate speech (ABC) did not differ across parenting stress profiles. A positive relationship between parenting stress and child problem behaviors in ASD has been well-documented (Giovagnoli et al., 2015; Peters-Scheffer et al., 2012). However, the examination of ratings across stress profiles has not been explored and findings may provide a more nuanced understanding of this relationship given the graded pattern observed. The relationship between parenting stress and child social impairment appears mixed in the literature (Foley Nicpon et al., 2010; Lopata et al., 2016). Findings from this study may provide insight into this complex relationship. Future studies should rely on teacher-rated measures and/or performance-based, objective measures to help clarify this potential relationship.

In contrast to the graded pattern observed among parent ratings, there were similar ratings of child problem behaviors and social impairment by clinicians on available measures of these functional areas across the parent stress profiles. This discrepancy between patterns of associations in parent and clinician ratings and parenting stress profiles emphasizes the complex relationship between parenting stress, child problem behaviors, and social impairment. Discrepancies between raters have been similarly observed between parents and other professionals (e.g. teacher and clinician) in other studies of problem behaviors using the same measures across raters (Lane et al., 2013; Macintosh & Dissanayake, 2006) and social impairment (Azad et al., 2016; Blacher et al., 2014; Jepsen et al., 2012; Kaat et al., 2013).

Relationships between parenting stress, problem behaviors, and social impairment are complex and transactional in nature (Giovagnoli et al., 2015; Peters-Scheffer et al., 2012). While it is possible that certain types of problem behaviors or social skill deficits may cause more parenting stress and available clinician-rated measures may not be sensitive enough to detect these differences, it is also possible that parents experiencing heightened stress may be more likely to perceive a greater severity of problem behaviors and social impairment. Findings from this study may provide preliminary support for the hypothesis that greater parenting stress is associated with higher ratings of problem behaviors and social impairment given that children were rated similarly by clinicians on alternative indices of maladaptive behaviors (CGI-S), autism severity (ADOS), developmental level (MSEL), and language abilities (PLS-4 and SLO). Clinicians and researchers considering the use of parent-rated measures of problem behaviors and social impairment could therefore consider accounting for parenting stress in study design, measurement, and/or analyses.

Parent ratings of child language abilities across two parent-rated measures did not fluctuate across parenting stress profiles, which confirmed our second hypothesis and mirrored findings in the literature (Nordahl-Hansen et al., 2013; Volden & Phillips, 2010). While all participants in this study had significant language delays, this finding indicates that ratings of language ability may be minimally susceptible to the influence of parenting stress. An investigation of ratings from parents and clinicians among children with language disorders or other developmental disabilities may further clarify this finding. However, the same graded pattern of parent ratings emerged for social communication impairment on the SRS, which supported the relationship between parenting stress and social impairment (Brei et al., 2015; Estes et al., 2013). This may tentatively suggest that the social use of language, rather than the quantity of words understood or produced, is an important variable in understanding parenting stress in ASD.

Many domains of child adaptive skills (e.g. motor and daily living skills) were rated similarly by parents regardless of their parenting stress profile, which suggests that parent-rated measures of certain adaptive skills may also be minimally influenced by parenting stress (Estes et al., 2013; Hastings et al., 2005; Lane et al., 2013). However, this finding is limited by the lack of a comparable measure as rated by clinicians. In contrast, an inverse relationship emerged between parenting stress profiles and parent ratings of social adaptive skills such that parents with the highest parenting stress reported the lowest social adaptive behaviors. Although no studies have explicitly examined parenting stress profiles and ratings of adaptive skills, several studies observed a similar relationship between higher parental stress and lower ratings of social adaptive skills (Giovagnoli et al., 2015; Tomanik et al., 2004). A similar graded pattern of parent ratings emerged and may provide further support for the conceptualization of parenting stress as a multifaceted construct. This may be particularly important for researchers and clinicians implementing social skills programs for youth with ASD as parenting stress may influence parent perceptions of socialization abilities.

Finally, a graded pattern of ratings emerged for parental empowerment at the family and service system levels. Although an inverse relationship between parenting stress and empowerment has been identified in the literature (Minjarez et al., 2013; Weiss et al., 2012, 2015), a more detailed understanding of this relationship may be afforded by examination of parenting stress profiles. Surprisingly, multiple graded patterns of parent ratings emerged on various measures, even though clinicians rated the developmental level of children to be similar. This may suggest that child developmental level does not influence parenting stress, which is consistent with other studies (Davis & Carter, 2008; Giovagnoli et al., 2015). Given this, clinicians working with children with ASD of diverse developmental abilities may observe differential parenting stress among parents. Parents of children with ASD and varying developmental levels may benefit from psychoeducation about parenting stress and associated factors (e.g. social impairment, but not developmental ability), coping skills, and stress management techniques unique to the experience of parenting a child with ASD.

Clinicians alike would benefit from similar training to understand the diversity of stress experiences in parents of children with ASD, complexities of the parenting experience, and the ways in which stress may or may not influence parent perceptions of their child. A deeper exploration of parent and family factors (e.g. cultural influences and family traditions) and their association with parenting stress and empowerment is warranted. Similarly, an investigation into the role of clinician factors (e.g. previous training, ethnicity/race, and knowledge about parenting experiences in ASD) in their ratings of children with ASD is an important future direction.

There are several limitations of this study that warrant discussion. First, parents and clinicians completed different measures and direct comparisons between raters could not be made. As such, findings are preliminary and may only provide a global understanding of these graded relationships between parenting stress profiles and ratings. Future investigations should compare ratings between raters on identical measures and the extent to which parenting stress may or may not be associated with rating discrepancies. Second, the sample was moderately sized, and investigations with larger samples are warranted. Third, while we report information about the validity and reliability of each scale from prior published literature when available, we did not analyze item-level data for reliability within our sample. Fourth, expert clinicians completing the CGI-S incorporate some parent input into their ratings, and thus, this measure is not as objective as other direct clinician-administered measures (e.g. PLS-4). Finally, this study included measures at a single timepoint and do not afford insight into how parenting stress profiles may influence ratings of treatment outcome over time.

Collectively, findings suggest that perspectives of child functioning offered by parents can be interpreted in the context of an understanding of parenting stress. This may be particularly important for parent-rated measures of certain child characteristics (e.g. problem behaviors, social impairment, and social adaptive skills) which appear to be consistently associated with parenting stress level. It appears that a parent’s profile of parenting stress may provide a nuanced understanding of the relationship between parenting stress and parent-rated measures, with important implications for studying the efficacy of early interventions and monitoring treatment change in clinical work. Specific accommodations in study design, measurement, and analyses should be considered when working with parents of young children with ASD to account for parenting stress and its potential influence. These accommodations are relevant to research investigations in general and for clinical trials in particular.

Footnotes

Acknowledgements

The authors gratefully acknowledge the families for their participation. The authors are thankful for the contributions of Rachel Schuck, Maria Estefania Millan, Robin Libove, Christina M Ardel, Dr Jennifer M Phillips, Dr Kari Berquist, Dr Mendy Minjarez, and other members of the research team at the Stanford Autism and Developmental Disorders Research Program (ADDRP).

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project utilized data from two published trials of Pivotal Response Treatment (PRT) conducted at Stanford University (Gengoux et al., 2019; Hardan et al., 2015). The first PRT trial (Hardan et al., 2015) was supported by an Autism Speaks Treatment Grant (#5773; PI: Hardan); the foundation was not involved in the trial. The second PRT trial (Gengoux et al., 2019) was supported by a grant from the National Institute on Deafness and Other Communication Disorders (DC01368902; PI: Hardan) and from the National Institute of Mental Health K01 Mentored Research Scientist Development Award (MH102428; PI: Abrams). Data management for both trials was supported by the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health through grant UL1 TR001085.

ORCID iDs

Jessica M Schwartzman

Grace W Gengoux

References

Abidin

R. R.

(1995). Parenting Stress Index (3rd ed.). Psychological Assessment Resources.

Aman

M. G.

Singh

N. N.

Stewart

A. W.

Field

C. J.

(1985). The aberrant behavior checklist: A behavior rating scale for the assessment of treatment effects. American Journal of Mental Deficiency, 89(5), 485–491. http://www.ncbi.nlm.nih.gov/pubmed/3993694

Azad

G. F.

Reisinger

Xie

Mandell

D. S.

(2016). Parent and teacher concordance on the Social Responsiveness Scale for Children with Autism. School Mental Health, 8, 368–376. https://doi.org/10.1007/s12310-015-9168-6

Barroso

N. E.

Hungerford

G. M.

Garcia

Graziano

P. A.

Bagner

D. M.

(2016). Psychometric properties of the Parenting Stress Index-Short Form (PSI-SF) in a high-risk sample of mothers and their infants. Psychological Assessment, 28, 1331–1335. https://doi.org/10.1037/pas0000257

Bearss

Johnson

Smith

Lecavalier

Swiezy

Aman

. . . Scahill

(2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: A randomized clinical trial. Jama, 313(15), 1524–1533.

Bishop

S. L.

Guthrie

Coffing

Lord

(2011). Convergent validity of the mullen scales of early learning and the differential ability scales in children with autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 116(5), 331–343.

Blacher

Cohen

S. R.

Azad

(2014). In the eye of the beholder: Reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8, 1648–1656. https://doi.org/10.1016/j.rasd.2014.08.017

Brei

N. G.

Schwarz

G. N.

Klein-Tasman

B. P.

(2015). Predictors of parenting stress in children referred for an autism spectrum disorder diagnostic evaluation. Journal of Developmental and Physical Disabilities, 27, 617–635. https://doi.org/10.1007/s10882-015-9439-z

Brookman-Frazee

(2004). Using parent/clinician partnerships in parent education programs for children with autism. Journal of Positive Behavior Interventions, 6, 195–213. https://doi.org/10.1177/10983007040060040201

10.

Brown

H. K.

Ouellette-Kuntz

Hunter

Kelley

Cobigo

Lam

(2011). Beyond an autism diagnosis: Children’s functional independence and parents’ unmet needs. Journal of Autism and Developmental Disorders, 41, 1291–1302. https://doi.org/10.1007/s10803-010-1148-y

11.

Christensen

D. L.

Maenner

M. J.

Bilder

Constantino

J. N.

Daniels

Durkin

M. S.

Fitzgerald

R. T.

Kurzius-Spencer

Pettygrove

S. D.

Robinson

Shenouda

White

Zahorodny

Pazol

Dietz

(2019). Prevalence and characteristics of autism spectrum disorder among children aged 4 years—Early Autism and Developmental Disabilities Monitoring Network, Seven Sites, United States, 2010, 2012, and 2014. Morbidity and Mortality Weekly Report: Surveillance Summaries, 68, 1–19. https://doi.org/10.15585/mmwr.ss6802a1

12.

Constantino

J. N.

(2012). Social Responsiveness Scale (SRS-2). Western Psychological Services. https://doi.org/10.1007/978-1-4419-1698-3_296

13.

Constantino

J. N.

Davis

S. A.

Todd

R. D.

Schindler

M. K.

Gross

M. M.

Brophy

S. L.

Metzger

L. M.

Shoushtari

C. S.

Splinter

Reich

(2003). Validation of a brief quantitative measure of autistic traits: Comparison of the Social Responsiveness Scale with the Autism Diagnostic Interview-Revised. Journal of Autism and Developmental Disorders, 33, 427–433. https://doi.org/10.1023/A:1025014929212

14.

Davis

N. O.

Carter

A. S.

(2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, Article 1278. https://doi.org/10.1007/s10803-007-0512-z

15.

de Bildt

Kraijer

Sytema

Minderaa

. (2005). The psychometric properties of the vineland adaptive behavior scales in children and adolescents with mental retardation. Journal of Autism and Developmental Disorders, 35(1), 53–62.

16.

Eaves

L. C.

H. H.

Eaves

D. M.

(1994). Subtypes of autism by cluster analysis. Journal of Autism and Developmental Disorders, 24, 3–22. https://doi.org/10.1007/BF02172209

17.

Ekas

Whitman

T. L.

(2010). Autism symptom topography and maternal socioemotional functioning. American Journal on Intellectual and Developmental Disabilities, 115, 234–249. https://doi.org/10.1352/1944-7558-115.3.234

18.

Estes

Olson

Sullivan

Greenson

Winter

Dawson

Munson

(2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain and Development, 35, 133–138. https://doi.org/10.1016/j.braindev.2012.10.004

19.

Fenson

Dale

Reznick

Thal

Bates

Hartung

Pethick

Reilly

(1993). The MacArthur Communicative Development Inventories : User’s guide and technical manual. Singular Publishing Group.

20.

Foley Nicpon

Doobay

A. F.

Assouline

S. G.

(2010). Parent, teacher, and self perceptions of psychosocial functioning in intellectually gifted children and adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 1028–1038. https://doi.org/10.1007/s10803-010-0952-8

21.

Gengoux

G. W.

Abrams

D. A.

Schuck

Millan

M. E.

Libove

Ardel

C. M.

Phillips

J. M.

Fox

Frazier

T. W.

Hardan

A. Y.

(2019). A pivotal response treatment package for children with autism spectrum disorder: An RCT. Pediatrics, 144, Article e20190178. https://doi.org/10.1542/peds.2019-0178

22.

Gengoux

G. W.

Berquist

K. L.

Salzman

Schapp

Phillips

J. M.

Frazier

T. W.

Minjarez

M. B.

Hardan

A. Y.

(2015). Pivotal response treatment parent training for autism: Findings from a 3-month follow-up evaluation. Journal of Autism and Developmental Disorders, 45(9), 2889–2898. https://doi.org/10.1007/s10803-015-2452-3

23.

Gerhardt

P. F.

Lainer

(2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41, 37–45. https://doi.org/10.1007/s10879-010-9160-2

24.

Giovagnoli

Postorino

Fatta

L. M.

Sanges

De Peppo

Vassena

De Rose

Vicari

Mazzone

(2015). Behavioral and emotional profile and parental stress in preschool children with autism spectrum disorder. Research in Developmental Disabilities, 45–46, 411–421. https://doi.org/10.1016/j.ridd.2015.08.006

25.

Gulsrud

A. C.

Hellemann

Shire

Kasari

(2015). Isolating active ingredients in a parent-mediated social communication intervention for toddlers with autism spectrum disorder. Journal of Child Psychology and Psychiatry and Allied Disciplines, 5, 606–613. https://doi.org/10.1111/jcpp.12481

26.

Guy

(1976). ECDEU assessment manual for psychopharmacology revised: Clinical global impression. NIMH.

27.

Hall

H. R.

Graff

J. C.

(2011). The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric Nursing, 34(1), 4–25.

28.

Hall

H. R.

Graff

J. C.

(2012). Maladaptive behaviors of children with autism: Parent support, stress, and coping. Issues in Comprehensive Pediatric Nursing, 35(3–4), 194–214.

29.

Hardan

A. Y.

Gengoux

G. W.

Berquist

K. L.

Libove

R. A.

Ardel

C. M.

Phillips

Frazier

T. W.

Minjarez

M. B.

(2015). A randomized controlled trial of Pivotal Response Treatment Group for parents of children with autism. Journal of Child Psychology and Psychiatry and Allied Disciplines, 56(8), 884–892. https://doi.org/10.1111/jcpp.12354

30.

Harris

P. A.

Taylor

Thielke

Payne

Gonzalez

Conde

J. G.

(2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42, 377–381. https://doi.org/10.1016/j.jbi.2008.08.010

31.

Hastings

R. P.

Kovshoff

Ward

N. J.

Degli Espinosa

Brown

Remington

(2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35(5), 635–644. https://doi.org/10.1007/s10803-005-0007-8

32.

Hayes

S. A.

Watson

S. L.

(2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y

33.

Huang

C. Y.

Yen

H. C.

Tseng

M. H.

Tung

L. C.

Chen

Y. D.

Chen

K. L.

(2014). Impacts of autistic behaviors, emotional and behavioral problems on parenting stress in caregivers of children with autism. Journal of Autism and Developmental Disorders, 44, 1383–1390. https://doi.org/10.1007/s10803-013-2000-y

34.

Jensen

V. K.

Spannagel

S. C.

(2011). The spectrum of autism spectrum disorder: A spectrum of needs, services, and challenges. Journal of Contemporary Psychotherapy, 41, 1–9. https://doi.org/10.1007/s10879-010-9161-1

35.

Jepsen

M. I.

Gray

K. M.

Taffe

J. R.

(2012). Agreement in multi-informant assessment of behaviour and emotional problems and social functioning in adolescents with autistic and Asperger’s disorder. Research in Autism Spectrum Disorders, 6, 1091–1098. https://doi.org/10.1016/j.rasd.2012.02.008

36.

Johnson

Frenn

Feetham

Simpson

(2011). Autism spectrum disorder: Parenting stress, family functioning and health-related quality of life. Families, Systems and Health, 29, 232–252. https://doi.org/10.1037/a0025341

37.

Jones

R. M.

Carberry

Hamo

Lord

(2017). Placebo-like response in absence of treatment in children with Autism. Autism Research, 10, 1567–1572. https://doi.org/10.1002/aur.1798

38.

Kaat

A. J.

Gadow

K. D.

Lecavalier

(2013). Psychiatric symptom impairment in children with autism spectrum disorders. Journal of Abnormal Child Psychology, 41, 959–969. https://doi.org/10.1007/s10802-013-9739-7

39.

King

B. H.

Hollander

Sikich

McCracken

J. T.

Scahill

Bregman

J. D.

. . . Ritz

(2009). Lack of efficacy of citalopram in children with autism spectrum disorders and high levels of repetitive behavior: Citalopram ineffective in children with autism. Archives of general psychiatry, 66(6), 583–590.

40.

Koren

P. E.

DeChillo

Friesen

B. J.

(1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37(4), 305–321. https://doi.org/10.1037//0090-5550.37.4.305

41.

Kwok

E. Y. L.

Brown

H. M.

Smyth

R. E.

Oram Cardy

(2015). Meta-analysis of receptive and expressive language skills in autism spectrum disorder. Research in Autism Spectrum Disorders, 9, 202–222. https://doi.org/10.1016/j.rasd.2014.10.008

42.

Lai

W. W.

Oei

T. P. S.

(2014). Coping in parents and caregivers of children with autism spectrum disorders (ASD): A review. Review Journal of Autism and Developmental Disorders, 1(3), 207–224.

43.

Lane

B. R.

Paynter

Sharman

(2013). Parent and teacher ratings of adaptive and challenging behaviours in young children with autism spectrum disorders. Research in Autism Spectrum Disorders, 7, 1196–1203. https://doi.org/10.1016/j.rasd.2013.07.011

44.

Lopata

Donnelly

J. P.

Jordan

A. K.

Thomeer

M. L.

McDonald

C. A.

Rodgers

J. D.

(2016). Brief Report: Parent-Teacher Discrepancies on the Developmental Social Disorders Scale (BASC-2) in the assessment of high-functioning children with ASD. Journal of Autism and Developmental Disorders, 46, 3183–3189. https://doi.org/10.1007/s10803-016-2851-0

45.

Lord

Risi

Lambrecht

Cook

E. H.

Leventhal

B. L.

Dilavore

P. C.

Pickles

Rutter

(2000). The Autism Diagnostic Observation Schedule-Generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205–223. https://doi.org/10.1023/A:1005592401947

46.

Lord

Rutter

Le Couteur

(1994). Autism Diagnostic Interview-Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659–685. https://doi.org/10.1007/BF02172145

47.

Macintosh

Dissanayake

(2006). Social skills and problem behaviours in school aged children with high-functioning autism and Asperger’s disorder. Journal of Autism and Developmental Disorders, 36, 1065–1076. https://doi.org/10.1007/s10803-006-0139-5

48.

McCracken

J. T.

McGough

Shah

Cronin

Hong

Aman

M. G.

. . . McMahon

(2002). Risperidone in children with autism and serious behavioral problems. New England Journal of Medicine, 347(5), 314–321.

49.

McStay

R. L.

Trembath

Dissanayake

(2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44, 3101–3118. https://doi.org/10.1007/s10803-014-2178-7

50.

Meadan

Halle

J. W.

Ebata

A. T.

(2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional children, 77(1), 7–36.

51.

Milligan

G. W.

Romesburg

H. C.

(1985). Cluster analysis for researchers. Journal of Marketing Research, 22, 224–225. https://doi.org/10.2307/3151374

52.

Minjarez

M. B.

Mercier

E. M.

Williams

S. E.

Hardan

A. Y.

(2013). Impact of pivotal response training group therapy on stress and empowerment in parents of children with autism. Journal of Positive Behavior Interventions, 15, 71–78. https://doi.org/10.1177/1098300712449055

53.

Minjarez

M. B.

Williams

S. E.

Mercier

E. M.

Hardan

A. Y.

(2011). Pivotal response group treatment program for parents of children with autism. Journal of Autism and Developmental Disorders, 41, 92–101. https://doi.org/10.1007/s10803-010-1027-6

54.

Mullen

E. M.

(1995). Mullen Scales of Early Learning, AGS edition: Manual and item administrative books. American Guidance Services.

55.

Mulligan

MacCulloch

Good

Nicholas

D. B.

(2012). Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. Social Work in Mental Health, 10, 311–330. https://doi.org/10.1080/15332985.2012.664487

56.

Murray

D. S.

Ruble

L. A.

Willis

Molloy

C. A.

(2009). Parent and teacher report of social skills in children with autism spectrum disorders. Language, Speech, and Hearing Services in Schools, 40, 109–115. https://doi.org/10.1044/0161-1461(2008/07-0089)

57.

Nevill

R. E.

Lecavalier

Stratis

E. A.

(2018). Meta-analysis of parent-mediated interventions for young children with autism spectrum disorder. Autism, 22, 84–98. https://doi.org/10.1177/1362361316677838

58.

Nordahl-Hansen

Kaale

Ulvund

S. E.

(2013). Inter-rater reliability of parent and preschool teacher ratings of language in children with autism. Research in Autism Spectrum Disorders, 7, 1391–1396. https://doi.org/10.1016/j.rasd.2013.08.006

59.

Norris

Aman

M. G.

Mazurek

M. O.

Scherr

J. F.

Butter

E. M.

(2019). Psychometric characteristics of the aberrant behavior checklist in a well-defined sample of youth with autism spectrum disorder. Research in Autism Spectrum Disorders, 62, 1–9.

60.

Oono

I. P.

Honey

E. J.

Mcconachie

(2013). Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews, 4, Article CD009774. https://doi.org/10.1002/14651858.CD009774.pub2

61.

Osborne

L. A.

McHugh

Saunders

Reed

(2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092–1103. https://doi.org/10.1007/s10803-007-0497-7

62.

Peters-Scheffer

Didden

Korzilius

(2012). Maternal stress predicted by characteristics of children with autism spectrum disorder and intellectual disability. Research in Autism Spectrum Disorders, 6, 696–706. https://doi.org/10.1016/j.rasd.2011.10.003

63.

Reed

Osborne

L. A.

(2013). The role of parenting stress in discrepancies between parent and teacher ratings of behavior problems in young children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 471–477. https://doi.org/10.1007/s10803-012-1594-9

64.

Rowberry

Macari

Chen

Campbell

Leventhal

J. M.

Weitzman

Chawarska

(2014). Screening for autism spectrum disorders in 12-month-old high-risk siblings by parental report. Journal of Autism and Developmental Disorders, 45(1), 221–229. https://doi.org/10.1007/s10803-014-2211-x

65.

Rubenstein

Edmondson Pretzel

Windham

G. C.

Schieve

L. A.

Wiggins

L. D.

DiGuiseppi

Olshan

A. F.

Howard

A. G.

Pence

B. W.

Young

Daniels

(2017). The broader autism phenotype in mothers is associated with increased discordance between maternal-reported and clinician-observed instruments that measure child autism spectrum disorder. Journal of Autism and Developmental Disorders, 47, 3253–3266. https://doi.org/10.1007/s10803-017-3248-4

66.

Schreibman

Dawson

Stahmer

A. C.

Landa

Rogers

S. J.

McGee

G. G.

Kasari

Ingersoll

Kaiser

A. P.

Bruinsma

McNerney

Wetherby

Halladay

(2015). Naturalistic developmental behavioral interventions: Empirically validated treatments for autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(8), 2411–2428. https://doi.org/10.1007/s10803-015-2407-8

67.

Schwartzman

B. C.

Wood

J. J.

Kapp

S. K.

(2016). Can the five factor model of personality account for the variability of autism symptom expression? Multivariate approaches to behavioral phenotyping in adult autism spectrum disorder. Journal of Autism and Developmental Disorders, 46, 253–272. https://doi.org/10.1007/s10803-015-2571-x

68.

Scott

A. J.

Knott

(1974). A cluster analysis method for grouping means in the analysis of variance. Biometrics, 30, 507–512. https://doi.org/10.2307/2529204

69.

Singh

N. N.

Curtis

W. J.

Ellis

C. R.

Nicholson

M. W.

Villani

T. M.

Wechsler

H. A.

(1995). Psychometric analysis of the family empowerment scale. Journal of Emotional and Behavioral Disorders, 3(2), 85–91.

70.

Skarakis-Doyle

Campbell

Dempsey

(2009). Identification of children with language impairment: Investigating the classification accuracy of the MacArthur–bates communicative development inventories, Level III. American Journal of Speech-Language Pathology, 18(3), 277–288.

71.

Sparrow

Balla

Cicchetti

(1984). The Vineland Adaptive Behavior Scales: Interview edition, survey. In Newmark

C. S.

(Ed.), Major psychological assessment instruments. Allyn & Bacon.

72.

Stadnick

N. A.

Chlebowski

Baker-Ericzén

Dyson

Garland

Brookman-Frazee

(2017). Psychiatric comorbidity in autism spectrum disorder: Correspondence between mental health clinician report and structured parent interview. Autism, 21, 841–851. https://doi.org/10.1177/1362361316654083

73.

Stadnick

N. A.

Stahmer

Brookman-Frazee

(2015). Preliminary Effectiveness of Project ImPACT: A parent-mediated intervention for children with autism spectrum disorder delivered in a community program. Journal of Autism and Developmental Disorders, 45, 2092–2104. https://doi.org/10.1007/s10803-015-2376-y

74.

Stratis

E. A.

Lecavalier

(2017). Predictors of parent–teacher agreement in youth with autism spectrum disorder and their typically developing siblings. Journal of Autism and Developmental Disorders, 47, 2575–2585. https://doi.org/10.1007/s10803-017-3173-6

75.

Tomanik

Harris

G. E.

Hawkins

(2004). The relationship between behaviours exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability, 29(1), 16–26. https://doi.org/10.1080/13668250410001662892

76.

Volden

Phillips

(2010). Measuring pragmatic language in speakers with autism spectrum disorders: Comparing the children’s communication checklist-2 and the test of pragmatic language. American Journal of Speech-Language Pathology, 19, 204–212. https://doi.org/10.1044/1058-0360(2010/09-0011)

77.

Walsh

C. E.

Mulder

Tudor

M. E.

(2013). Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping. Research in Autism Spectrum Disorders, 7(2), 256–264. https://doi.org/10.1016/j.rasd.2012.08.010

78.

Weiss

J. A.

Cappadocia

M. C.

MacMullin

J. A.

Viecili

Lunsky

(2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261–274. https://doi.org/10.1177/1362361311422708

79.

Weiss

J. A.

MacMullin

J. A.

Lunsky

(2015). Empowerment and Parent gain as mediators and moderators of distress in mothers of children with autism spectrum disorders. Journal of Child and Family Studies, 24(7), 2038–2045. https://doi.org/10.1007/s10826-014-0004-7

80.

Weitlauf

A. S.

Vehorn

A. C.

Taylor

J. L.

Warren

Z. E.

(2014). Relationship satisfaction, parenting stress, and depression in mothers of children with autism. Autism, 18, 194–198. https://doi.org/10.1177/1362361312458039

81.

Wiggins

L. D.

Robins

D. L.

Adamson

L. B.

Bakeman

Henrich

C. C.

(2012). Support for a dimensional view of autism spectrum disorders in toddlers. Journal of Autism and Developmental Disorders, 42, 191–200. https://doi.org/10.1007/s10803-011-1230-0

82.

Zaidman-Zait

Mirenda

Duku

Szatmari

Georgiades

Volden

Zwaigenbaum

Vaillancourt

Bryson

Smith

Fombonne

Roberts

Waddell

Thompson

(2014). Examination of bidirectional relationships between parent stress and two types of problem behavior in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44, 1908–1917. https://doi.org/10.1007/s10803-014-2064-3

83.

Zaidman-Zait

Mirenda

Duku

Vaillancourt

Smith

I. M.

Szatmari

Bryson

Fombonne

Volden

Waddell

Zwaigenbaum

Georgiades

Bennett

Elsabaggh

Thompson

(2017). Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism, 21, 155–166. https://doi.org/10.1177/1362361316633033

84.

Zimmerman

I. L.

Steiner

V. G.

Pond

R. A.

(2002). PLS-4: Preschool language scale-4 (4th ed.). Psychological Corporation.