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Abstract and Figures

A collaboration between the University of Warwick, Cerebra, Mencap, the Challenging Behaviour Foundation, and parents of children with learning disabilities The idea for this booklet was motivated by parents' concerns about the lack of accessible guidance on how families can help promote the well-being of their child with a learning disability. We would like to thank all of the parents who contributed their stories in this booklet, all the parents who participated in research studies over the years, and the parents who gave us their feedback on this booklet.
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Caring for a child with Autism Spectrum Disorder (ASD) has been linked to a range of negative outcomes for parents but less is known about the putative impact upon the parental couple relationship. The relationship satisfaction of parents of children with ASD was investigated using multilevel modeling. Mothers and fathers (146 couples) reported on their relationship satisfaction, their own well-being, and the behavior problems of the child with ASD and a sibling. Results indicated that mothers and fathers reported similar levels of relationship satisfaction and it was significantly and negatively associated with parental depression and the behavior problems of the child with ASD. Relationship satisfaction was unrelated to the behavior problems of a sibling, the number of children in the household, and family socioeconomic position (SEP). Further longitudinal research that captures a broader range of variables is required to build a theoretical understanding of relationship satisfaction in families of children with ASD. Current evidence suggests that early intervention routes targeting either child behavior problems, parental mental health, or the couple relationship have the potential to benefit inter-connected subsystems within the broader family system. Autism Res 2017. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.
Chapter
A common narrative relating to families of children with intellectual and developmental disabilities (IDD) is that the child with IDD has a negative impact on the other members of their family, especially in terms of family members' psychological adjustment. The main purpose of this review is to explore this assumption of negative impact. Evidence is presented to suggest that the majority of parents and siblings of children with IDD do not have psychological problems at a level of clinical concern. Thus, if there is negative impact, this is not a universal experience for family members. In addition, parents report positive perceptions and impacts relating to their child with IDD even when they are also experiencing considerable stress. Also, it is not only the child with IDD who may have an impact on other family members, but all members within the family are likely to influence each other and different family subsystems. Therefore, a wholly negative impact narrative is too simplistic as a description of families' experiences of raising a child with IDD. Future IDD family research needs to incorporate more longitudinal designs, more systems analyses and questions, a direct focus on positive experiences of family members, and to incorporate the perspective of children with IDD themselves.
Article
Background: Behavioural interventions are frequently used to address sleep problems in people with intellectual disabilities (ID). The current study aimed to systematically review evidence on the efficacy of behavioural interventions for children and adults with ID and sleep problems. Method: Electronic and hand searches identified seven studies for inclusion (N = 169). Standardised mean difference effect sizes (d) were calculated for group studies (N = 4). Non-overlap effect sizes (Tau-U) were calculated for single case experimental design studies (SCEDs; N = 3). Results: A large effect size (weighted d = 0.923, confidence interval: 0.705 to 1.151) across group studies indicated large improvements in sleep problems following behavioural intervention. Effect size across SCEDs (weighted Tau-U: 0.528, confidence interval: 0.351 to 0.705) indicated a 53% improvement compared with baseline. Sleep initiation and sleep maintenance problems showed significant improvements post-intervention. Follow-up effects were less consistent across study designs and suggested that some sleep problems maintain gains better than others. Conclusion: Meta-analytic evidence from group and SCEDs can provide complementary information about efficacy. Findings propose that behavioural interventions are a promising evidence-based practice for improving sleep problems in people with ID.
Article
Abstract Few research studies have explored how the level of a child's behavior problems leads to psychological distress in parents of children with autism. The authors explored whether psychological acceptance and mindfulness mediated this relationship between child behavior and parental distress. Seventy-one mothers and 39 fathers of children with autism participated, by reporting on their own positive and negative psychological well-being and their child's behavior problems. Psychological acceptance was found to act as a mediator variable for maternal anxiety, depression, and stress, and for paternal depression. General mindfulness and mindful parenting had significant mediation effects for maternal anxiety, depression, and stress. These results contribute to evidence that mindfulness and acceptance may be important parental psychological processes, with implications for parent support.
Article
There are few published research studies in which siblings of children with autism spectrum disorder (ASD) provide self-reports about their own behavioural and emotional problems and their sibling relationships. Reliance on parent reports may lead to incomplete conclusions about the experiences of siblings themselves. Siblings 7-17 years and their mothers from 94 families of children with ASD were recruited. Mothers reported on family demographics, the behavioural and emotional problems of their child with ASD, and on their own symptoms of depression. Siblings reported on their relationship with their brother or sister with ASD, and siblings 11+ years of age also self-reported on their behavioural and emotional problems. Compared with normative British data, siblings reported very slightly elevated levels of behavioural and emotional problems. However, none of the mean differences were statistically significant and all group differences were associated with small or very small effect sizes - the largest being for peer problems (effect size = 0.31). Regression analysis was used to explore family systems relationships, with sibling self-reports predicted by the behaviour problems scores for the child with ASD and by maternal depression. Maternal depression did not emerge as a predictor of siblings' self-reported sibling relationships or their behavioural and emotional problems. Higher levels of behaviour problems in the child with ASD predicted decreased warmth/closeness and increased conflict in the sibling relationship. These data support the general findings of recent research in that there was little indication of clinically meaningful elevations in behavioural and emotional problems in siblings of children with ASD. Although further research replication is required, there was some indication that sibling relationships may be at risk where the child with ASD has significant behaviour problems.
Article
Research with siblings of children with Autism Spectrum Disorders (ASD) suggests that they may be at increased risk for behavioural and emotional problems and relatively poor sibling relationships. This study investigated a diathesis-stress model, whereby the presence of Broad Autism Phenotype features in the typically developing siblings might interact with family-environmental risk variables to predict sibling functioning (5–17 years of age) of children with an Autism Spectrum Disorder (ASD), their child with an ASD, and their own psychological well-being. Sibling adjustment was associated with the extent of behaviour problems in the child with an ASD and with the extent of the sibling's Broad Autism Phenotype (BAP) features. Sibling relationships were more negative when the child with an ASD had more behaviour problems and when there was evidence of critical expressed emotion in the family environment. Siblings with more BAP features, who had brothers/sisters with an ASD and a greater number of behaviour problems, had more behaviour problems themselves. Siblings with more BAP features who had parents with mental health problems reported more sibling relationship conflict.
Article
We examined child behavior problems and maternal mental health in a British population-representative sample of 5 year-old children with an autism spectrum disorder (ASD), controlling for the presence of an intellectual disability (ID). Behavior problems were significantly higher in children with ASD with/out ID compared to typically developing children, but compared to children with ID only hyperactivity was significantly higher in children with ASD/ID. After controlling for ID and maternal mental health, the presence of ASD significantly increased the odds for hyperactivity, conduct problems and emotional symptoms. Negative maternal outcomes (serious mental illness, psychological distress, and physical health limitations) were not consistently elevated in ASD. The findings highlight the early age at which behavior problems emerge in ASD, and suggest that at this age , there may not be a clear disadvantage for maternal mental health associated with having a child with ASD in the family, over and above that conferred by child behavior problems.
Article
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. 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. 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. 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.
The developmental course of prosocial skills and behaviour problems in children with intellectual disabilities, and their association with maternal well-being
  • T Bailey
  • V Totsika
  • R P Hastings
  • E Emerson
  • C Hatton
Bailey, T., Totsika, V., Hastings, R.P., Emerson, E., & Hatton, C. (in preparation). The developmental course of prosocial skills and behaviour problems in children with intellectual disabilities, and their association with maternal well-being.