OBJECTIVE. We assessed associations between parenting a child with autism and stress indicators.
METHODS. In the 2003 National Survey of Children’s Health, parents or other knowledgeable adult respondents for children aged 4 to 17 years reported their recent feelings about their life sacrifices to care for their child, difficulty caring for their child, frustration with their child’s actions, and anger toward their child. Responses were compiled in the Aggravation in Parenting Scale. Parents of children reported to have autism (N = 459) were compared with parents of: (1) children with special health care needs including emotional, developmental, or behavioral problems other than autism that necessitated treatment (children with other developmental problems [N = 4545]); (2) children with special health care needs without developmental problems (N = 11475); and (3) children without special health care needs (N = 61826). Weighted estimates are presented.
RESULTS. Parents of children with autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than autism (44%), parents of children with special health care needs without developmental problems (12%), and parents of children without special health care needs (11%). However, within the autism group, the proportion of parents with high aggravation was 66% for those whose child recently needed special services and 28% for those whose child did not. The parents of children with autism and recent special service needs were substantially more likely to have high aggravation than parents of children with recent special service needs in each of the 3 comparison groups. Conversely, parents of children with autism but without recent special service needs were not more likely to have high aggravation than parents of children with other developmental problems.
CONCLUSIONS. Parenting a child with autism with recent special service needs seems to be associated with unique stresses.
Autism is a neurodevelopmental disorder characterized by early onset (before 3 years old) of significant impairment in social interaction and communication and unusual, stereotyped behaviors. Parents of children with developmental disabilities face challenges placing them at risk for high levels of stress and other negative psychological outcomes. Parenting a child with autism may pose additional stressors related to the child's challenges in communicating, difficult behaviors, social isolation, difficulties in self-care, and lack of community understanding. Several studies reported increased psychological distress, including depression, anxiety, and components of stress, such as decreased family cohesion and increased somatic complaints and burnout, among parents of children with autism and related autism spectrum disorders (ASDs) in comparison to parents of typically developing children1–4 or parents of nonautistic children with mental retardation or other developmental disabilities.3–4 In addition, in several studies of parents of children with ASDs, the child's behavior and conduct problems were most strongly related to parent stress, rather than other autism symptoms, severity of developmental delay, or adaptive skills.5–7
Studies to date have been limited by small sample sizes and low statistical power and low response rates with possible selection bias. Generalizability was also limited because samples were typically drawn from clinical settings, schools, or parent organizations.
We examined responses to questions related to stress and aggravation among parents or guardians identified as most knowledgeable about health matters for children in the National Survey of Children's Health (NSCH). We compared responses from parents of children reported to have autism with responses from parents of typically developing children and children with other developmental problems and considered variation across population subgroups.
The survey design and sampling methodology for the 2003 NSCH are described separately.8,9 We selected children aged 4 to 17 years at interview who were not missing data on autism (0.1%) or special health care needs (1.6%). Our sample included 78305 children and their corresponding parent (96%) or other adult (4%) identified as the most knowledgeable adult. The interviewer specifically asked to talk to “the parent or guardian who lives in this household who knows the most about the health and health care of” the child selected randomly as the target of the interview. The results thus refer to this specific parent or guardian. For brevity, the respondent is referred to as a parent throughout this report.
Autism was ascertained from the question: “Has a doctor or health professional ever told you that [child's name] has autism?” Children with special health care needs (CSHCN) were identified by using the CSHCN Screener, which includes questions on 5 health care consequences: need/use prescription medications (except vitamins); need/use more medical, mental health, and education services than most same-aged children; limited/prevented in ability to do things most same-aged children can do; need/get special therapy such as physical, occupational, and speech; have any kind of emotional, developmental, or behavioral problem for which treatment or counseling is needed. A child was classified as having special health care needs if the parent responded affirmatively to any of the 5 health care consequences and 2 follow-up questions: whether the consequence was because of a medical, behavioral, or other health condition; and whether that condition had or was expected to last ≥12 months.10
On the basis of responses to the autism and CSHCN Screener questions, we divided children into 4 mutually exclusive groups by using the following hierarchy: (1) children with autism; (2) CSHCN with other emotional, developmental, or behavioral problems necessitating treatment/counseling (CSHCN with developmental problems); (3) CSHCN but not emotional, developmental or behavioral problems (CSHCN without developmental problems); and (4) children without special health care needs.
We assessed outcomes related to parenting stress and aggravation among parents of children in the 4 groups. For parents of children aged 6 to 17 years, we assessed perception of closeness and ability to share ideas or talk about things that matter with the child. For parents of children aged 4 to 17 years, we assessed reported ability to cope with day-to-day parenting demands and responses on how often in the past month they felt: (1) the child was much harder to care for than most same-aged children; (2) bothered a lot by things the child did; (3) they were giving up more of their life than expected to meet the child's needs; and (4) angry with the child. These latter 4 outcomes were combined into a single measure by using established criteria for the Aggravation in Parenting scale.11 Each of the 4 outcomes was given equal weight in the scale. Scores were in the high-aggravation range if the parent answered usually or always to ≥2 outcomes or the parent answered sometimes, usually, or always to ≥3 outcomes, with at least 1 response in the usually always range.
Previous studies suggest psychological distress among parents of a child with autism varies by characteristics associated with the child's condition.5–7 Autism includes a spectrum of disorders with a wide severity range. Because diagnosis is solely based on in-depth behavioral observation by a specialized health care professional, populations with less access to services might be subject to underascertainment or delayed diagnosis; this was suggested for Hispanic children in a previous analysis of NSCH.12 We hypothesized that among parents of a child with autism, a number of factors might impact or intensify their stress level, including indicators of autism severity and/or current special service needs, factors related to severity (eg, males diagnosed with autism show a wider severity range than females13), and factors related to socioeconomic status and culture that might impact resources, access to services, and care-seeking behavior. We examined variation in the composite Aggravation in Parenting outcome by demographic, health care, and social support indicators (see Table 1) for the autism and 3 comparison groups.
Because for 94% of children with autism, English was the primary household language and health insurance was available, stratification on these factors was infeasible. We restricted our sample on these 2 criteria before undertaking stratified analyses. In single-factor stratified analyses, we observed considerable variation in proportion of parents with high Aggravation in Parenting score for the autism group according to whether or not the child recently needed special services (eg, physical therapy, medical equipment, special education, or counseling). We examined this factor further as a possible marker for current autism severity. No other factor emerged as such an important discriminator of Aggravation in Parenting among parents of children with autism. Because need for special services was only ascertained for children indicated to have a personal doctor or nurse, these in-depth analyses required additional restriction to children with a personal doctor or nurse. The final restricted sample included 87% of children in the original autism sample, 83% of CSHCN with developmental problems, 85% of CSHCN without developmental problems, and 74% of children without special health care needs. In this sample, we stratified results of high Aggravation in Parenting scores by each demographic, health care, and social support factor and need for special services in the past 12 months simultaneously. Although we observed additional variation in patterns of high Aggravation in Parenting scores for the autism and comparison groups by several demographic and health care factors, we did not formally test for the statistical significance of possible effect modifications. We present the stratum-specific estimates to highlight the range in aggravation across subgroups and the complexity of assessing parenting stress associated with autism. Because only general questions on stress and aggravation were included in the NSCH, this analysis is viewed primarily as a descriptive, hypothesis-generating study.
All estimates were weighted to reflect the noninstitutionalized population of children nationally. We assessed differences between the autism and comparison groups with χ2 tests adjusted to account for the complex sample design by using SUDAAN software.14 We did not adjust for multiple comparisons; we present P values as an indication of stability of the estimates.
Human subjects review was not required for this study.
Children with autism were more likely than children in each comparison group to be 4 to 10 years old, male, live in a household in which English was the primary language, have health insurance, and have recently needed special services (Table 1). Children with autism were more likely than CSHCN with developmental problems other than autism to live in a household with: 2 parents, ≥1 parent or other adult who completed high school, and income ≥200% of the federal poverty level (FPL). In addition, their parents were more likely to have someone to turn to for emotional help in parenting. Children with autism were less likely than CSHCN with other developmental problems to be enrolled in Medicaid/State Children's Health Insurance Program (SCHIP) and to have recently received mental health care.
Parents with a child ≥6 years old with autism were less likely than their counterparts in each comparison group to feel they were able to share ideas with their child; however, they were more likely than parents of CSHCN with developmental problems other than autism and equally likely as the 2 comparison groups of children without developmental problems to report feeling very close with their child (Table 2). Parents of children ≥4 years old with autism were more likely than parents of CSHCN with other developmental problems to report coping very well with parenting demands, but were also more likely to report difficulty in 1 area of the Aggravation in Parenting scale: feeling their child was harder to care for than most same-aged children; they were less likely to report difficulties in 2 areas: being bothered by things their child does and feeling angry with their child. Parents of children with autism were more likely than parents of CSHCN without developmental problems and parents of children without special health care needs to report difficulty in 3 areas of the scale: feeling their child was harder to care for than most same-aged children, being bothered by things their child does, and giving up more of their life than expected to meet their child's needs. On the composite Aggravation in Parenting scale, parents of children with autism were more likely to score in the high-aggravation range (55%) than parents of CSHCN with other developmental problems (44%), parents of CSHCN without developmental problems (12%), and parents of children without special health care needs (11%).
For parents of children without special health care needs, high parental aggravation declined from 11% to 7% when the sample was restricted on the basis of primary language, health insurance coverage, and having a personal doctor or nurse; there was little change in estimates of parental aggravation for the other groups (Table 3). Stratification on the factors included in Table 1 revealed slight-to-moderate variation in the proportion, with high aggravation among parents of children in the autism and comparison groups (data not shown). Within the autism group, the greatest heterogeneity was with need for special services in the past 12 months: 66% of parents whose child needed special services had high aggravation versus 28% of those whose child did not need special services, a 2.4-fold differential. In the 3 comparison groups, a high Aggravation in Parenting score was only slightly associated (risk ratios: 1.2–1.5) with special service needs.
The disparity in Aggravation in Parenting scores among the parents of children with autism persisted after stratification by both need for special services and other factors (Table 3). More than 55% of parents of children with autism who recently needed special services were classified as having high aggravation (range: 56%–93% across 25 demographic, health care, and social support subgroups examined). Less than 50% of parents of children with autism who did not need special services were classified as having high aggravation (range: 18%–45% across 16 subgroups examined). Among those reporting recent special service needs, parents of children with autism within all subgroups examined were more likely to have high Aggravation in Parenting scores than parents of children in all comparison groups. Nearly all differences reached statistical significance. Conversely, among those not reporting special service needs, there were no significant differences in high aggravation between parents of children with autism and parents of CSHCN with other developmental problems.
Although we lacked data to examine specific behavior problems found in association with autism, we further assessed parents of children with autism who responded affirmatively to a general question on whether the child had difficulties with emotions, concentration, or behavior (89%). These parents were asked to rate the level of family burden these difficulties posed. Level of burden was predictive of high aggravation, but again, the effect varied by special service needs. Among parents whose children needed special services, the Aggravation in Parenting score was high for 93% of those reporting family burden was great, 63% of those reporting family burden was medium, and 51% of those reporting family burden was little-none. Among parents whose children did not need special services, the Aggravation in Parenting score was high for 56%, 33%, and 20% of those reporting family burden was great, medium, and little-none, respectively.
Children with autism face many developmental and physical challenges, often necessitating numerous therapies from several different disciplines. Shifting treatment from expert-driven or provider-based models which are child-centered to models emphasizing a collaborative team approach, in which families are integral members, is gaining attention.15 Such family-centered models consider family concerns and quality of life in developing treatment plans.
The findings reported here support and inform the need to consider family effects in planning for services of children with autism. We found that overall, the most knowledgeable parents and other adult caregivers of children diagnosed with autism reported high levels on several indicators of stress and aggravation. Their level of Aggravation in Parenting was markedly higher than that observed for parents of children without special health care needs or CSHCN without developmental problems. Parents of children with autism were also more likely to have high levels on the composite Aggravation in Parenting scale than parents of CSHCN with nonautism developmental problems; however, the association was not homogeneous. For children with an identified personal doctor or nurse, those parents whose child with autism recently needed special service were particularly likely to rate high on the Aggravation in Parenting scale across other demographic, health care, and social support subgroups. However, for parents whose child had autism but did not need special services (representing 28% of children with autism), the level of aggravation was much lower overall and not increased in comparison to parents of CSHCN with nonautism developmental problems.
We cannot discern whether need for special services as reported by parents of children with autism was related to (1) severity of autism behavior difficulties, and/or cognitive functioning, (2) stability (or lack of) of the child's current functioning, (3) the parent's perception of severity and stability, or (4) or some combination of these. Nonetheless, the results underscore the need to consider variability among the families of children with autism.
These data are subject to several limitations. Parent-reported autism depends on access to appropriate health or educational services for diagnosis and communication about the diagnosis to the parent. The survey queried about “autism” only; thus, children diagnosed with less severe ASDs, such as Asperger disorder or pervasive developmental disorder–not otherwise specified, may be underreported. We assessed parents' self-reported feelings toward the sample child but lacked data to assess how those feelings translated into specific interactions with the child or impacted family functioning in other ways. Because these data are cross-sectional, the temporality of associations between having CSHCN with developmental problems and parent self-report of recent parenting difficulties cannot be definitively established. In addition, the most salient predictor of high Aggravation in Parenting scores, recent special service needs, was only ascertained for children with a personal doctor or nurse necessitating restriction to these children for in-depth analyses; however, the vast majority of children were retained in the restricted sample. Finally, these results pertain to self-identified most knowledgeable parent or guardian. Because each child is assumed to have only 1 such parent, the findings may not be generalizable to all parents or caregivers living with a child with autism.
This study also had many strengths. NSCH is a nationally representative sample of US children. The large sample allowed for more detailed analyses than previous studies, with simultaneous stratification on multiple factors. We compared parents of children with autism to several distinct comparison groups, thus providing a complete frame of reference for our findings.
Our data suggest that parents or primary caregivers of children with autism may face unique stresses and may benefit from family-centered treatment. Future studies are needed to confirm and expand on these findings, with a focus on the many specific stresses that may adversely impact the array of families with a child with autism.
- Accepted September 15, 2006.
- Address correspondence to Laura A. Schieve, PhD, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Mailstop E-86, 1600 Clifton Rd, Atlanta, GA 30333. E-mail:
The views in this article are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.
The authors have indicated they have no financial interests relevant to this article to disclose.
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- Copyright © 2007 by the American Academy of Pediatrics