Abstract
Background:
Health-related quality of life (HRQoL) can be used as a measure of the impact of a particular disorder on one’s daily functioning. Previous studies have found that comorbid psychiatric disorders in children and adolescents with autism spectrum disorder (ASD) are associated with poorer HRQoL than ASD alone. Less is known about potential associations between specific symptoms of comorbid psychopathology (i.e., emotional and behavioral problems) and domains of functioning or HRQoL in youth with ASD.
Method:
Participants were 470 children with ASD 2–14 years old recruited from one of three sites. Hierarchical multiple regressions were conducted with Pediatric Quality of Life Inventory 4.0 (PedsQL; Varni et al., 2001) HRQoL domains of physical functioning, emotional functioning, school functioning, and social functioning as the dependent variables. Covariates were entered at step 1, followed by the independent variables of interest at step 2: irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech.
Results:
The study found that increased irritability was associated with poorer emotional and physical functioning and that greater social withdrawal was associated with worse social functioning. Furthermore, findings showed that more hyperactivity/noncompliance was associated with worse school functioning.
Conclusions:
Results demonstrated that certain emotional and behavioral symptoms are differentially associated with domains of HRQoL. This indicates that comorbid emotional and behavioral problems should be considered when measuring HRQoL in children with ASD. It also suggests that treating comorbid emotional/behavioral problems could improve HRQoL and functioning in certain domains for this population.
Keywords: autism spectrum disorder, ASD, quality of life, well-being, functioning, comorbidity, psychiatric comorbidity, mental health
Introduction
Quality of life (QoL) is a comprehensive, multidimensional approach to subjectively evaluating psychosocial and physical well-being; it is an individual’s perception of their well-being given their physical, psychological, and social context (WHOQOL Group, 1995). As health measurement has been broadened to include more than indicators of morbidity and mortality, the construct of QoL serves as a guiding framework for assessing overall well-being and life satisfaction (WHOQOL Group, 1994). Typically, QoL assessments incorporate indicators of physical, social, and emotional well-being; however, as a construct, QoL is an organizing concept rather than an objective index (Wallander, Schmitt, & Koot, 2001). Operationalization of QoL may vary across studies, and therefore must be clearly defined by the research team.
Although used interchangeably with the construct of quality of life in some publications, health-related quality of life (HRQoL) is more specific to the impact of a particular disease or disorder and its treatment on the daily functioning of an individual (Dey, Landolt, & Mohler-Kuo, 2012; Drotar, 2004). By contrast, QoL is a broader concept that can be applied to all children regardless of diagnostic classification and disease burden (Wallander et al., 2001). Specific definitions of HRQoL may differ; however, there is widespread agreement that HRQoL is a multidimensional construct with several domains. In the pediatric HRQoL literature, a number of domains have been studied including physical functioning, emotional functioning, social functioning, and school functioning (Bastiaansen, Koot, Ferdinand, & Verhulst, 2004; Dey et al., 2012; Ikeda, Hinckson, & Krägeloh, 2014; Wallander et al., 2001). Each domain consists of subjective and objective indicators of HRQoL, which are the factors measured. For example, physical functioning can include indicators of energy level and walking ability (Varni, Seid, & Kurtin, 2001).
Assessment of HRQoL is particularly well-suited to conditions that have a significant negative impact on multiple domains of everyday functioning, such as autism spectrum disorder (ASD), which is a pervasive developmental disorder characterized by impairment in social communication and a pattern of restricted and repetitive behaviors (American Psychiatric Association, 2013). Appropriately describing HRQoL and factors that influence HRQoL in individuals with ASD could improve subjective and objective outcomes in this population (Burgess & Gutstein, 2007). For individuals with ASD and their families, HRQoL is a meaningful measure of overall well-being.
A number of measures have been utilized to examine HRQoL as a multidimensional construct in children and adolescents with autism (Ikeda et al., 2014). In their review of the literature, Ikeda and colleagues (2014) determined that the Pediatric Quality of Life Inventory 4.0 (PedsQL; Varni et al., 2001) had been used the most frequently to investigate HRQoL in this population. In addition, the PedsQL was the only measure with established reliability and validity in youth with ASD (Kuhlthau et al., 2010; Shipman, Sheldrick, & Perrin, 2011).
Given their myriad of challenges, it is unsurprising that children and adolescents with ASD experience poorer HRQoL than the general pediatric population (Kamp-Becker et al., 2011; Kuhlthau et al., 2010, 2013; Shipman et al., 2011). Youth with ASD also experience poorer HRQoL than youth with other physical health conditions (Kuhlthau et al., 2010, 2013) and mental health conditions (Bastiaansen et al., 2004). Bastiaansen and colleagues (2004) found that children with a pervasive developmental disorder had poorer parent- and clinician-reported quality of life than children with diagnoses from other groups of psychiatric disorders including mood, anxiety, attention-deficit, and disruptive behavior disorders.
Research indicates that the severity of core symptoms of ASD is associated with measures of HRQoL (Kuhlthau et al., 2010, 2013). Kuhlthau and colleagues (2010) found an association between HRQoL and social responsiveness and repetitive behaviors in a sample of children and adolescents with autism. Parents of 286 youth (2–17 years old) with ASD completed the PedsQL (Varni et al., 2001), Social Responsiveness Scale (SRS; Constantino, 2005), and Repetitive Behavior Scale-Revised (RBS-R; Bodfish, Symons, & Lewis, 1999). There were significant negative correlations between the SRS and all areas of functioning measured by the PedsQL: physical functioning, emotional functioning, social functioning, and school functioning. Also, there were significant negative correlations between the RBS-R and PedsQL for all scales except school functioning. Findings indicate that increased problems with social responsiveness and repetitive behaviors are associated with poorer HRQoL in youth with ASD.
Several investigations have also found a significant correlation between HRQoL and psychiatric comorbidity in youth with ASD (Kuhlthau, McDonnell, Coury, Payakachat, & Macklin, 2018; Kuhlthau et al., 2010, 2013). These studies indicate that more severe internalizing and externalizing symptomatology is associated with poorer HRQoL in a variety of domains (Kuhlthau et al., 2013), including physical functioning, emotional functioning, social functioning, and school functioning (Kuhlthau et al., 2010). Studies of the HRQoL of youth with ASD and specific psychiatric comorbidities, such as attention-deficit/hyperactivity disorder (ADHD; Sikora, Vora, Coury, & Rosenberg, 2012) and obsessive-compulsive disorder (OCD; Kuhlthau et al., 2018) have found similar results. Children with ASD and a comorbid mental illness experienced worse HRQoL than those with ASD alone (Kuhlthau et al., 2018; Sikora et al., 2012).
Less is known about potential associations between specific symptoms of comorbid psychopathology (i.e., emotional and behavioral problems) and domains of HRQoL in young people with ASD. Kuhlthau and colleagues (2013) found significant associations between parent-reported problem behavior, as measured by the Aberrant Behavior Checklist (ABC; Aman & Singh, 1986), and parents’ assessment of their child’s satisfaction and achievement, as measured by the Child Health and Illness Profile-Child Edition (CHIP-CE; Riley et al., 2004). It was found that specific emotional and behavioral problems were differentially associated with CHIP-CE subscale scores. For example, the stereotypic behavior subscale of the ABC had a significant negative association with the satisfaction and achievement subscales of the CHIP-CE. More severe stereotypic behavior, as measured by the ABC, was associated with poorer life satisfaction and achievement, as measured by the CHIP-CE. Nonetheless, this investigation had several limitations. The sample size was only 71 youth with autism; and the potential confound of intellectual functioning was not accounted for in statistical models. In addition, the CHIP-CE has not been validated in youth with ASD (Ikeda et al., 2014).
The present study aimed to examine potential associations between emotional and behavioral problems (i.e., irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech) and varied domains of HRQoL (i.e., school functioning, physical functioning, social functioning, and emotional functioning) in a large sample of youth with ASD. The PedsQL was used to assess HRQoL as it is the only measure of HRQoL with evidence of validity and reliability in youth with ASD (Bastiaansen et al., 2004; Limbers, Heffer, & Varni, 2009; Ikeda et al., 2014). It was hypothesized that greater hyperactivity/noncompliance would be associated with poorer school functioning as the ability to remain seated and attentive is a necessary skill to learn in the classroom. It was also hypothesized that higher social withdrawal and hyperactivity/noncompliance would be associated with poorer social functioning as children with ASD who are overactive may be more likely to engage in socially impulsive or intrusive behavior, while those who are withdrawn and aloof may have fewer opportunities for peer engagement. Finally, it was theorized that more irritability would be associated with poorer emotional functioning as irritability is predominantly an affective experience.
Methods
Participants
Data for this analysis were previously collected as part of a larger study focused on the psychometric properties of a treatment-outcome tool for autism, the results of which have been reported on by Mazurek and colleagues (2020). Participants were 470 youth 2–14 years of age (M = 6.80) recruited from one of three sites: (1) University of Missouri, (2) Rady Children’s Hospital San Diego, and (3) Nationwide Children’s Hospital. All participants were diagnosed with ASD according to Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Association, 2013) criteria and met or exceeded clinical cut-off scores on the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2; Lord et al., 2012).
Measures
Demographic characteristics.
Primary caregivers completed a demographic questionnaire designed for the original study, which included information about child age and gender.
Intellectual ability.
Intelligence was assessed with either the Differential Ability Scales, Second Edition (DAS-II; Elliot, 2007) General Conceptual Ability score or the Mullen Scales of Early Learning (MSEL; Mullen, 1995) Early Learning Composite score depending on child age and ability. The DAS-II measures the cognitive abilities of youth across a range of developmental levels from 2 years, 6 months through 17 years, 11 months. The MSEL measures the cognitive and developmental functioning of children from birth to 68 months of age.
Autism symptom severity.
The Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) was utilized as a measure of autism symptoms. The SRS-2 is a 65-item caregiver-report assessment of ASD symptomatology, including social-communication impairment and stereotyped behaviors; and can be used as a continuous measure of overall ASD traits. The SRS-2 has demonstrated good validity (Constantino et al., 2003) and reliability (Constantino & Gruber, 2005).
Comorbid emotional and behavioral problems.
The Aberrant Behavior Checklist (ABC; Aman & Singh, 1986) was used to measure comorbid emotional and behavioral symptoms. The ABC is a 58- item parent-report assessment of problem behavior among individuals with developmental disabilities. It comprises five subscales: irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech; and it has shown strong psychometric properties (Aman, Burrow, & Wolford, 1995).
Health-Related quality of life.
The Pediatric Quality of Life Inventory 4.0 (PedsQL; Varni et al., 2001) is a 23-item questionnaire designed to assess the HRQoL of children and adolescents 2–18 years old. It includes four age-appropriate versions (2–4 years old, 5–7 years old, 8–12 years old, and 13–18 years old) and takes approximately 5–10 minutes to complete. All versions use a 5-point rating scale for respondents to assess HRQoL over the previous month. Scores are converted to a 0–100 scale with higher scores indicating better HRQoL. The PedsQL evaluates four distinct areas of health-related functioning: physical functioning, emotional functioning, school functioning, and social functioning. Due to the age and developmental ability of the sample, the caregiver-report version of the PedsQL was used in this study. The PedsQL is the only measure of HRQoL with established reliability and validity in youth with ASD (Ikeda et al., 2014).
Data Analysis
Sample characteristics and means and standard deviations for ABC and PedsQL scales were generated (see Table 1). Five two-step hierarchical multiple regressions were conducted with PedsQL physical functioning, emotional functioning, school functioning, and social functioning as the dependent variables. Entered at step 1 were the covariates of age, gender, IQ, and SRS-2 T-score. Entered at step 2 were the independent variables of interest: ABC irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech. Shapiro-Wilk tests were utilized to examine the distribution of model residuals. If necessary, an outcome variable was transformed such that model residuals met the assumption of normality. Standardized beta coefficients, R2, ΔR2, and p-values were reported.
Table 1.
Sample characteristics (N = 470) and means and standard deviations for ABC and PedsQL
| M (SD)/Frequency | |
|---|---|
| Age | 6.80 (3.79) |
| Gender | |
| Male | 82.13% |
| Female | 17.87% |
| Race/Ethnicity | |
| White | 64.68% |
| Black | 5.32% |
| American Indian and Alaska Native | 0.21% |
| Asian | 4.04% |
| Native Hawaiian and Other Pacific Islander | 0.64% |
| Hispanic | 2.77% |
| Other | 1.91% |
| 2+ Race/Ethnicity | 18.94% |
| Not Reported | 1.49% |
| IQ | 84.56 (23.48) |
| IQ < 70 | 26.67% |
| IQ ≥ 70 | 73.33% |
| Vocabulary Size | |
| No Words | 4.89% |
| 1–5 Words | 5.53% |
| 6–25 Words | 6.60% |
| 26–100 Words | 9.36% |
| More Than 100 Words | 72.34% |
| Not Reported | 1.28% |
| SRS-2 Total T-score | 71.73 (12.21) |
| ABC | |
| Hyperactivity/Noncompliance | 18.64 (10.70) |
| Inappropriate Speech | 3.37 (2.82) |
| Irritability | 12.07 (9.43) |
| Social Withdrawal | 10.02 (7.55) |
| Stereotypic Behavior | 4.48 (4.37) |
| PedsQL | |
| Emotional Functioning | 65.09 (18.77) |
| Social Functioning | 53.71 (21.00) |
| School Functioning | 62.90 (19.42) |
| Physical Functioning | 73.99 (19.36) |
SRS-2: Social Responsiveness Scale-Second Edition, ABC: Aberrant Behavior Checklist, PedsQL: Pediatric Quality of Life Inventory 4.0
Results
Emotional Functioning
The hierarchical multiple regression revealed that at step 1, age, gender, IQ, and SRS-2 contributed significantly to the model, F(4, 372) = 34.39, p < .001, and accounted for 26.99% of the variance in PedsQL emotional functioning (see Table 2). Introducing ABC subscales (i.e., irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech) explained an additional 13.46% of the variance in emotional functioning; and this ΔR2 was significant, F(5, 367) = 16.59, p < .001. Of the independent variables of interest, ABC irritability was significantly associated with emotional functioning on the PedsQL (β = −.36, p < .001). Shapiro-Wilk test indicated that model residuals were normally distributed.
Table 2.
Hierarchical multiple regression examining associations between comorbid emotional and behavioral problems in youth with ASD and emotional functioning
| B (SE) | β | R2 | ΔR2 | p | ηp2 | |
|---|---|---|---|---|---|---|
| Step 1 | 0.27 | < 0.001 | ||||
| Age | −0.01 (0.23) | 0.00 | 0.956 | |||
| Gender | 2.88 (2.18) | 0.06 | 0.188 | |||
| IQ | −0.23 (0.04) | −0.29 | < 0.001 | |||
| SRS-2 Total T-Score | −0.83 (0.08) | −0.48 | < 0.001 | |||
| Step 2 | 0.13 | < 0.001 | ||||
| Age | −0.23 (0.22) | −0.05 | 0.299 | |||
| Gender | 2.49 (2.00) | 0.05 | 0.214 | |||
| IQ | −0.21 (0.03) | −0.27 | < 0.001 | |||
| SRS-2 Total T-Score | −0.44 (0.10) | −0.25 | < 0.001 | |||
| ABC Hyperactivity/Noncompliance | −0.01 (0.11) | −0.01 | 0.918 | .00 | ||
| ABC Inappropriate Speech | −0.56 (0.33) | −0.08 | 0.092 | .01 | ||
| ABC Irritability | −0.74 (0.12) | −0.36 | < 0.001 | .09 | ||
| ABC Social Withdrawal | −0.01 (0.14) | 0.00 | 0.953 | .00 | ||
| ABC Stereotypic Behavior | −0.12 (0.23) | −0.03 | 0.592 | .00 |
SRS-2: Social Responsiveness Scale-Second Edition, ABC: Aberrant Behavior Checklist, PedsQL: Pediatric Quality of Life Inventory 4.0
B (SE): unstandardized beta (standard error for the unstandardized beta), β: standardized beta, R2: coefficient of determination, ΔR2: change in the coefficient of determination, p: probability value, ηp2 : partial eta squared
Social Functioning
The hierarchical multiple regression revealed that at step 1, age, gender, IQ, and SRS-2 contributed significantly to the model, F(4, 373) = 28.67, p < .001, and accounted for 23.51% of the variance in PedsQL social functioning (see Table 3). Introducing ABC subscales (i.e., irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech) explained an additional 3.32% of the variance in social functioning; and this ΔR2 was significant, F(5, 368) = 3.34, p = .006. ABC social withdrawal was significantly associated with social functioning on the PedsQL (β = −.22, p < .001). Shapiro-Wilk test indicated that model residuals were normally distributed.
Table 3.
Hierarchical multiple regression examining associations between comorbid emotional and behavioral problems in youth with ASD and social functioning
| B (SE) | β | R2 | ΔR2 | p | ηp2 | |
|---|---|---|---|---|---|---|
| Step 1 | 0.24 | < 0.001 | ||||
| Age | −0.27 (0.27) | −0.05 | 0.333 | |||
| Gender | −0.73 (2.57) | −0.01 | 0.775 | |||
| IQ | −0.03 (0.04) | −0.03 | 0.513 | |||
| SRS-2 Total T-Score | −0.95 (0.10) | −0.47 | < 0.001 | |||
| Step 2 | 0.03 | 0.006 | ||||
| Age | −0.16 (0.28) | −0.03 | 0.576 | |||
| Gender | −0.06 (2.55) | 0.00 | 0.981 | |||
| IQ | −0.06 (0.04) | −0.07 | 0.166 | |||
| SRS-2 Total T-Score | −0.70 (0.13) | −0.35 | < 0.001 | |||
| ABC Hyperactivity/Noncompliance | 0.10 (0.14) | 0.05 | 0.486 | .00 | ||
| ABC Inappropriate Speech | −0.09 (0.43) | −0.01 | 0.836 | .00 | ||
| ABC Irritability | 0.07 (0.15) | 0.03 | 0.623 | .00 | ||
| ABC Social Withdrawal | −0.63 (0.18) | −0.22 | < 0.001 | .03 | ||
| ABC Stereotypic Behavior | −0.37 (0.29) | −0.07 | 0.203 | .00 |
SRS-2: Social Responsiveness Scale-Second Edition, ABC: Aberrant Behavior Checklist, PedsQL: Pediatric Quality of Life Inventory 4.0
B (SE): unstandardized beta (standard error for the unstandardized beta), β: standardized beta, R2: coefficient of determination, ΔR2: change in the coefficient of determination, p: probability value, ηp2: partial eta squared
School Functioning
The hierarchical multiple regression revealed that at step 1, age, gender, IQ, and SRS-2 contributed significantly to the model, F(4, 353) = 52.03, p < .001, and accounted for 37.09% of the variance in PedsQL school functioning (see Table 4). Introducing ABC subscales explained an additional 2.81% of the variance and this ΔR2 was significant, F(5, 348) = 3.25, p = .007. ABC hyperactivity/noncompliance was significantly associated with school functioning on the PedsQL (β = −.15, p = .022). Shapiro-Wilk test indicated that model residuals were normally distributed.
Table 4.
Hierarchical multiple regression examining associations between comorbid emotional and behavioral problems in youth with ASD and school functioning
| B (SE) | β | R2 | ΔR2 | p | ηp2 | |
|---|---|---|---|---|---|---|
| Step 1 | 0.37 | < 0.001 | ||||
| Age | −1.98 (0.23) | −0.40 | < 0.001 | |||
| Gender | 3.96 (2.19) | 0.08 | 0.071 | |||
| IQ | 0.00 (0.04) | −0.01 | 0.903 | |||
| SRS-2 Total T-Score | −0.70 (0.08) | −0.39 | < 0.001 | |||
| Step 2 | 0.03 | 0.007 | ||||
| Age | −2.17 (0.23) | −0.44 | < 0.001 | |||
| Gender | 3.15 (2.17) | 0.06 | 0.148 | |||
| IQ | 0.01 (0.04) | 0.01 | 0.898 | |||
| SRS-2 Total T-Score | −0.54 (0.11) | −0.30 | < 0.001 | |||
| ABC Hyperactivity/Noncompliance | −0.27 (0.12) | −0.15 | 0.022 | .01 | ||
| ABC Inappropriate Speech | 0.05 (0.35) | 0.01 | 0.896 | .00 | ||
| ABC Irritability | −0.16 (0.13) | −0.08 | 0.214 | .00 | ||
| ABC Social Withdrawal | 0.06 (0.14) | 0.02 | 0.686 | .00 | ||
| ABC Stereotypic Behavior | 0.09 (0.24) | 0.02 | 0.705 | .00 |
SRS-2: Social Responsiveness Scale-Second Edition, ABC: Aberrant Behavior Checklist, PedsQL: Pediatric Quality of Life Inventory 4.0
B (SE): unstandardized beta (standard error for the unstandardized beta), β: standardized beta, R2: coefficient of determination, ΔR2: change in the coefficient of determination, p: probability value, ηp2: partial eta squared
Physical Functioning
Shapiro-Wilk test indicated that model residuals were not normally distributed; therefore, PedsQL physical functioning was squared and the hierarchical regression rerun. After transformation, model residuals followed the normal distribution. Hierarchical multiple regression found that at step 1, age, gender, IQ, and SRS-2 contributed significantly to the model, F(4, 373) = 24.57, p < .001, and accounted for 20.86% of the variance in physical functioning (see Table 5). Introducing ABC irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech explained an additional 3.61% of the variance; and this ΔR2 was significant, F(5, 368) = 3.52, p = .004. ABC irritability was significantly associated with physical functioning on the PedsQL (β = −.19, p = .003).
Table 5.
Hierarchical multiple regression examining associations between comorbid emotional and behavioral problems in youth with ASD and physical functioninga
| B (SE) | β | R2 | ΔR2 | p | ηp2 | |
|---|---|---|---|---|---|---|
| Step 1 | 0.21 | < 0.001 | ||||
| Age | −93.78 (34.43) | −0.14 | 0.007 | |||
| Gender | 258.83 (323.53) | 0.04 | 0.424 | |||
| IQ | −9.90 (5.48) | −0.09 | 0.071 | |||
| SRS-2 Total T-Score | −101.20 (12.16) | −0.41 | < 0.001 | |||
| Step 2 | 0.04 | 0.004 | ||||
| Age | −90.43 (34.90) | −0.13 | 0.01 | |||
| Gender | 314.15 (320.64) | 0.05 | 0.328 | |||
| IQ | −9.65 (5.56) | −0.09 | 0.083 | |||
| SRS-2 Total T-Score | −72.63 (16.12) | −0.29 | < 0.001 | |||
| ABC Hyperactivity/Noncompliance | 24.91 (17.45) | 0.10 | 0.154 | .01 | ||
| ABC Inappropriate Speech | −53.99 (53.50) | −0.06 | 0.313 | .00 | ||
| ABC Irritability | −55.99 (19.01) | −0.19 | 0.003 | .02 | ||
| ABC Social Withdrawal | −40.33 (22.04) | −0.11 | 0.068 | .01 | ||
| ABC Stereotypic Behavior | 15.89 (36.69) | 0.03 | 0.665 | .00 |
Physical functioning (i.e., outcome variable) squared so that model residuals would follow the normal distribution
SRS-2: Social Responsiveness Scale-Second Edition, ABC: Aberrant Behavior Checklist, PedsQL: Pediatric Quality of Life Inventory 4.0
B (SE): unstandardized beta (standard error for the unstandardized beta), β: standardized beta, R2: coefficient of determination, ΔR2: change in the coefficient of determination, p: probability value, ηp2: partial eta squared
Discussion & Implications
The current study sought to examine relationships between emotional and behavioral problems (i.e., irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech) and different domains of HRQoL (i.e., school functioning, physical functioning, social functioning, and emotional functioning) in a large sample of children with ASD. Results indicated that increased irritability was associated with poorer emotional and physical functioning. Not surprisingly, the study also found that greater social withdrawal was associated with worse social functioning. Furthermore, findings showed that more hyperactivity/noncompliance was associated with poorer school functioning.
As hypothesized, significant associations were found between irritability and emotional functioning in children and adolescents with ASD. Youth with autism who exhibited more irritability also demonstrated worse general emotional functioning. As irritability is often conceptualized as a predominately affective experience (Stringaris, 2011), this does not seem surprising. Nonetheless, formal definitions of irritability are scarce in the literature. Snaith and Taylor (1985) define irritability as a mood state characterized by reduced control over anger, which typically results in verbal and/or behavioral outbursts. In individuals with ASD, irritability is often associated with externalizing behaviors, such as tantrums and aggression (Fung et al., 2016; Owen et al., 2009); and these externalizing behaviors are commonly viewed as having a significant negative impact on others (Oldehinkel, Hartman, De Winter, Veenstra, & Ormel, 2004). However, the relationship between irritability and emotional functioning in youth with ASD suggests that irritability can be an outward behavioral manifestation of a negative internal feeling state; irritability may be an indicator of poor emotional well-being in young people with autism. It could also be that the emotional functioning subscale of the PedsQL (Varni et al., 2001) and the irritability subscale of the ABC (Aman & Singh, 1986) are not measuring entirely distinct constructs. Both subscales include indicators of negative mood states (e.g., sad or depressed mood). As such, there is likely some overlap in the symptoms and behaviors assessed by the subscales.
The current results also demonstrated that greater irritability was associated with poorer physical functioning among children with ASD. Although this finding was not predicted, there is a well-established relationship between irritability and physical illness in individuals without autism (Cohen-Mansfield & Billig, 1986; Fava, 1987; Klein, Ziering, Girsh, & Miller, 1985; Mangelli et al., 2006). For example, studies have found an association between irritability and gastrointestinal disorders, endocrine disorders, and cardiovascular disorders (Fava, 1987; Mangelli et al., 2006). In persons with ASD, a relationship has been found between irritability and gastrointestinal symptoms (Chaidez, Hansen, & Hertz-Picciotto, 2014). This study did not examine the directionality of relationships between emotional and behavioral problems and HRQoL; thus, it is not known whether physical symptoms play a causal role in the development of irritability or whether irritability contributes to the occurrence of physical symptoms in children with ASD. Nonetheless, this investigation highlights the importance of health care providers assessing for medical conditions and physical impairment if youth with autism present with irritability.
As predicted increased hyperactivity/noncompliance was associated with worse school functioning in children and adolescents with ASD. In youth without ASD, hyperactivity and noncompliance have been found to have a significant negative impact on academic performance; hyperactivity and noncompliance can contribute to poorer task efficiency, assignment completion, and work accuracy (Austin & Agar, 2005; Greenwood, Horton, & Utley, 2002). In youth with ASD, Sikora and colleagues (2012) found that comorbid ADHD, which is characterized by symptoms of hyperactivity and noncompliance, was associated with worse school, physical, emotional, and social functioning, as well as poorer overall HRQoL. Results from this study suggest that symptoms of hyperactivity and noncompliance in children with autism may not need to reach clinically significant levels to have a negative impact on school functioning. Health care providers and educators should collaborate to address hyperactive and noncompliant behaviors in school-age youth with ASD to support school and academic performance in this population.
Furthermore, as predicted, it was found that increased social withdrawal was associated with worse social functioning. While all children with ASD demonstrate social-communication challenges, their patterns of social behavior may vary; some children with autism actively attempt to engage socially, and some children with autism seek to avoid social engagement (Volkmar, Carter, Grossman, & Klin, 1997). When children with ASD are withdrawn and isolate themselves from peers, they have fewer opportunities to practice their social skills and learn through social reinforcement (e.g., attention, approval, and affection from others) (Katz, Conway, Hammen, Brennan, & Najman, 2011; Skinner, 1965). Social withdrawal is associated with myriad negative social consequences, including peer victimization (Dill, Vernberg, Fonagy, Twemlow, & Gamm, 2004) and lower quality friendships (Rubin, Wojslawowicz, Rose-Krasnor, Booth-LaForce, & Burgess, 2006). Therefore, social withdrawal is a worthwhile therapeutic target. Results from this investigation suggest that decreasing social withdrawal may improve social functioning and quality of life in youth with ASD.
It was also predicted that increased hyperactivity/noncompliance would be associated with worse social functioning in children with ASD; however, this study did not find a significant relationship between symptoms of hyperactivity and noncompliance and social functioning. This may be because the children with ASD in this study were relatively young overall (M = 6.80 years) and there may be fewer peer and social expectations for behavioral regulation at younger ages. There is positive growth in children’s social skills from school-entry to the late-elementary years and into adolescence (Berry & O’Connor, 2010; Klimes-Dougan & Zeman, 2007). Social skills allow one to successfully initiate and maintain social interactions and relationships, and include such abilities as impulse control and interpersonal conflict resolution (Berry & O’Connor, 2010; Gresham & Elliott, 1990). Hyperactivity and noncompliance may have less impact on social functioning in younger children with autism as these behaviors are more normative early in social development. As children with ASD grow older and social expectations increase in complexity, it is possible that hyperactivity/noncompliance may have a greater impact on social performance.
The results of this study add to previous literature on HRQoL in autism by highlighting the additional burden of comorbid emotional and behavioral symptoms and the negative associations between certain emotional/behavioral problems and domains of functioning. Nonetheless, this investigation did have several limitations. Participants were recruited from a small number of autism clinics; and, therefore, may not be representative of all children and adolescents with ASD. In addition, emotional and behavioral problems and HRQoL of youth with ASD were based on parent-report. However, it would not have been possible for all participants to provide self-report due to the inclusion of very young children and those with limited cognitive functioning.
In summary, this investigation examined relationships between several emotional and behavioral problems (i.e., irritability, social withdrawal, stereotypic behavior, hyperactivity/noncompliance, and inappropriate speech) and varied domains of HRQoL (i.e., school functioning, physical functioning, social functioning, and emotional functioning) in a large sample of young people with ASD. The results showed that certain emotional and behavioral symptoms are differentially associated with domains of HRQoL. This indicates that comorbid emotional and behavioral problems should be considered when measuring HRQoL in children with ASD; and it also suggests that treatment of comorbid emotional and behavioral problems may improve functioning in certain domains and HRQoL in children with ASD. As this study was cross-sectional, directionality could not be determined. Longitudinal studies of comorbid symptoms and HRQoL in youth with autism would provide a better understanding of causality. Additionally, investigations of relationships between treatment of comorbid emotional and behavioral symptoms and HRQoL in children and adolescents with ASD would further the field.
Highlights.
The present study examined potential associations between comorbid emotional and behavioral problems and varied domains of health-related quality of life (HRQoL) in youth with autism spectrum disorder (ASD).
Results showed that certain emotional and behavioral symptoms are differentially associated with areas of HRQoL (i.e., domains of functioning).
Comorbid emotional and behavioral problems should be considered when measuring HRQoL in children with ASD.
Treatment of comorbid emotional and behavioral problems may improve functioning in certain domains and HRQoL in young people with ASD.
Acknowledgements
The authors are extremely grateful to all the families who participated in this study and to the research teams at each site. Research reported in this publication was supported by the National Institute of Mental Health of the National Institutes of Health under award number R01MH097726. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
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Conflict of Interest
The authors have no conflicts of interest to disclose.
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