Researchers commonly report that families of children with autism spectrum disorder (ASD) experience more parenting stress than families of typically developing (TD) children or those diagnosed with other disabilities [e.g., Down syndrome (DS), cerebral palsy, intellectual disability]. The authors reexamined the research using comparison groups to investigate parenting stress and conducted a meta-analysis to pool results across studies. The experience of stress in families of children with ASD versus families of TD children resulted in a large effect size. Comparisons between families of children of ASD and families with other disabilities also generated a large effect size however, this result should be interpreted with caution as it may be associated with the specific experience of parenting a child with DS.

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.

Background Family resilience is a growing field of inquiry, investigating factors that contribute to a family’s becoming stronger in spite of dealing with adversity. Despite the growing interest in studying family resilience, the topic has not been explored in families with children who have disabilities.This report, a part of a larger study ‐ using both quantitative and qualitative methodologies ‐ is an examination of factors of family resilience in the families of children with autism. Evidence of family resilience such as family connectedness and closeness, positive meaning-making of the disability, and spiritual and personal growth were identified and examined in this part of the study. Method The study uses a survey methodology, analysing responses to several rating scales and written responses to three open-ended questions. Survey respondents consisted of !"# parents and other primary caregivers of a child with autism ‐ ages between $ and !% years. Results Results suggest identification of specific resilience processes, such as: making positive meaning of disability, mobilization of resources, and becoming united and closer as a family; finding greater appreciation of life in general, and other people in specific; and gaining spiritual strength. Conclusions This study presents evidence that a considerable number of families of children with autism display factors of resilience ‐ reporting having become stronger as a result of disability in the family.

Evidence of resilience in families of children with autism

Objective To compare parent-reported prevalence of health conditions and health care use between children with and without autism. Design Cross-sectional analysis of the 2003 to 2004 National Survey of Children's Health. Setting Population-based sample across the United States. Participants More than 100 000 parents. The main exposure was “autism” (not further defined), from response to the question: “Has a doctor or health professional ever told you that your child has autism?” Main Outcome Measures Medical and mental health conditions and measures of health care use. Results Autism prevalence among children aged 3 to 17 years was 53 per 10 000 (95% confidence interval, 45-61 per 10 000), equating to a national estimate of 324 000 children (95% confidence interval, 274 000-375 000 children). Children with autism had a significantly ( P P Conclusion We found markedly higher reports of concurrent conditions and health care use associated with childhood autism in this study.

https://jamanetwork.com/journals/jamapediatrics/articlepdf/205312/poa60017_825_830.pdf

Parental report of health conditions and health care use among children with and without autism: National Survey of Children's Health.

Background: While research indicates elevated behavioural and emotional problems in children with autism spectrum disorders (ASD) and decreased well-being in their parents, studies do not typically separate out the contribution of ASD from that of associated intellectual disabilities (ID). We investigated child behavioural and emotional problems, and maternal mental health, among cases with and without ASD and ID in a large population-representative sample. Methods: Cross-sectional comparison of child behavioural and emotional problems and maternal mental health measures among 18,415 children (5 to 16 years old), of whom 47 had an ASD, 51 combined ASD with ID, 590 had only ID, and the remainder were the comparison group with no ASD or ID. Results: The prevalence of likely clinical levels of behavioural and emotional problems was highest among children with ASD (with and without ID). After controlling for age, gender, adversity, and maternal mental health, the presence of ASD and ID significantly and independently increased the odds for hyperactivity symptoms, conduct, and emotional problems. Emotional disorder was more prevalent in mothers of children with ASD (with or without ID). The presence of ASD, but not ID, significantly increased the odds for maternal emotional disorder. As has been found in previous research, positive maternal mental health was not affected by the presence of ASD or ID. Conclusions: ASD and ID are independent risk factors for behavioural and emotional problems. ASD (but not ID) is positively associated with maternal emotional disorder. Approaches to diagnosing hyperactivity and conduct problems in children with ASD may need to be reconsidered.

A population-based investigation of behavioural and emotional problems and maternal mental health : associations with autism spectrum disorder and intellectual disability

Background:Parents of children with autism spectrum disorders (ASDs) are at risk for higher stress levels than parents of children with other developmental disabilities and typical development Recent advances in early diagnosis have resulted in younger children being diagnosed with ASDs but factors associated with parent stress in this age group are not well understood Aims: The present study examined parenting-related stress and psychological distress in mothers of toddlers with ASD, developmental delay without ASD (DD), and typical development The impact of child problem behavior and daily living skills on parenting-stress and psychological distress were further investigated Methods: Participants were part of a larger research study on early ASD intervention Results: Parent self-report of parenting-related stress and psychological distress was utilized Parents of toddlers with ASD demonstrated increased parenting-related stress compared with parents of toddlers with DD and typical development However, psychological distress did not differ significantly between the groups Child behavior problems, but not daily living skills emerged as a significant predictor of parenting-related stress and psychological distress This was true for both mothers of children with ASD and DD Conclusions: These finding suggest that parents’ abilities to manage and reduce behavior problems is a critical target for interventions for young children with ASD and DD in order to improve child functioning and decrease parenting-related stress

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Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders

Mothers of children with Down syndrome, autism, and mixed etiology intellectual disabilities, matched on child age, gender, and communication skills (n = 19 in each group) completed measures of their child’s adaptive and problem behaviors, their own parenting stress, and positive perceptions of their child. Children with autism were rated as having more problem behaviors and lower levels of social competence than children with Down syndrome and mixed etiology intellectual disabilities. Mothers of children with autism scored lower on positive perceptions of their child, and higher on stress than the other two groups. After selecting closely matched groups, we found several group differences in child behavior but little evidence of group differences in maternal outcomes.

Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism

The aims of this article were to test the psychometric properties of the Positive Contributions Scale (PCS), and to compare perceptions of positive contributions reported by mothers and fathers. Participants were 140 mothers and 60 fathers of children with intellectual disabilities. Results supported the reliability and construct validity of the PCS. Internal consistency was good for all subscales bar one, and the PCS total score was associated with scores on the Positive Affect Scale. There were differences on PCS scales for mothers and fathers, with mothers generally reporting more positive contributions than fathers. The PCS is a reasonably robust measure and its use in future research should help to address questions about the nature and function of parental positive perceptions. The PCS might also be used in applied settings to help balance the effects of asking families about their difficulties and support needs.

Christopher Hill

Papers

Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism

Positive contributions made by children with an intellectual disability in the family : Mothers' and fathers' perceptions

Symptoms of ADHD and their correlates in children with intellectual disabilities.