Vasiliki Totsika

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

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.

The Influence of External and Internal Foci of Attention on Transfer to Novel Situations and Skills

(2003). The Influence of External and Internal Foci of Attention on Transfer to Novel Situations and Skills. Research Quarterly for Exercise and Sport: Vol. 74, No. 2, pp. 220-232.

Social support and coping as mediators or moderators of the impact of work stressors on burnout in intellectual disability support staff

Theories applied to work stress predict that coping will mediate and support will moderate the impact of work demands on worker well-being. We explored the mediating and moderating effects of coping and support on the relationship between perceived work demands and burnout in support staff working with adults with intellectual disabilities. Ninety-six support staff completed questionnaires that measured demographic factors, perceived work demands, coping, support, and burnout. A sub-sample participated in a follow-up 22 months later. Cross-sectional regression analyses revealed a relationship between work demands and emotional exhaustion burnout that reduced when wishful thinking coping was introduced as a predictor. Exploration of multiple mediator effects using bootstrap methods revealed that wishful thinking partially mediated the relationship between work demands and emotional exhaustion but practical coping did not. Practical coping had a main effect relationship with personal accomplishment, and there was evidence that support moderated the impact of work demands on personal accomplishment (although not fully consistent with theory). Study variables, other than personal accomplishment, were stable over 22 months but no longitudinal relationships between coping and burnout was found. These findings emphasise the importance of coping in managing work demands and for the development of burnout in support staff.

‘I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood

The experiences of individuals in middle adulthood with Asperger syndrome have been the subject of little previous research, especially in terms of their experience of support services. In the present research, 11 adults with Asperger syndrome were interviewed. Interpretative phenomenological analysis (IPA) was used to interpret the interviews. Four themes emerged from the analysis: living with Asperger syndrome; employment issues; experiences with mainstream support; and future steps towards supporting adults with Asperger syndrome. The findings highlighted the anxiety, depression, and communication difficulties that people with Asperger syndrome may experience. Much of the available support is perceived as unsuitable for individuals with Asperger syndrome. All participants wanted to remain as independent as possible, and believed an individualized approach to support would be greatly beneficial. Recommendations are made for future practice to help support adults with Asperger syndrome.

Child behavior problems and parental well-being in families of children with autism: the mediating role of mindfulness and acceptance.

Few research studies have explored how the level of a childs 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 childs 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.

Persistence of challenging behaviours in adults with intellectual disability over a period of 11 years

BACKGROUND Challenging behaviours in people with an intellectual disability (ID) often develop early and tend to persist throughout life. This study presents data on the chronicity of challenging behaviours in adults with ID over a period of 11 years, and explores the characteristics of people with persistent serious behaviour problems. METHOD Support staff provided data on 58 adults living in a long-term residential facility using an interview survey schedule assessing challenging behaviours in 1992 and 2003. RESULTS Participants presenting with serious physical attacks, self-injury and frequent stereotypy were the most likely to persist in these behaviours over time. These behaviours were characterised by high persistence percentages and associations over time. However, the earlier presence of serious challenging behaviours did not significantly affect the likelihood of serious challenging behaviours in 2003. Individuals with persisting behaviour problems differed from those who did not present serious behaviour problems on the basis of their younger age, increased mobility, and decreased sociability and daily living skills in 1992. CONCLUSIONS Estimates of persistence for challenging behaviours are affected by the statistics chosen to represent stability. The apparent persistence of serious challenging behaviours highlights the need to identify the factors related to maintenance of these behaviours over time. The participant characteristics and adaptive behaviours identified in the present study were not consistently related to the persistence of challenging behaviours. Therefore, other factors, including environmental characteristics, are likely to be related to challenging behaviour persistence.

Curricular quality and day‐to‐day learning activities in pre‐school

The purpose of this paper is to show how curricular quality is related to the day‐to‐day activities experienced by children and the pedagogical activities of staff, both coded through systematic target‐child observations. Data were drawn from the Effective Provision of Pre‐School Education (EPPE) and the Researching Effective Pedagogy in the Early Years (REPEY) studies. Curricular quality was measured by coding the ECERS‐E, an English curricular extension to the well‐known ECERS‐R. In centres scoring high on the ECERS‐E, staff engaged in pedagogical practices that included more ‘sustained shared thinking’ and more ‘direct teaching’ such as questioning or modelling. In high‐scoring centres, children were also observed participating in more activities associated with early reading, emergent writing and active listening. Children in centres assessed as ‘adequate’ spent more time in activities associated with the ‘Physical Development’ and ‘Creative’ curriculum. Thus the ECERS‐E gives higher scores to pedagogical practices and activities where staff take a more active role in children’s learning, including scaffolding young children’s play, especially in the communication and literacy domains of the curriculum.

Gender differences when parenting children with autism spectrum disorders: a multilevel modeling approach.

Parenting a child with autism may differentially affect mothers and fathers. Existing studies of mother–father differences often ignore the interdependence of data within families. We investigated gender differences within-families using multilevel linear modeling. Mothers and fathers of children with autism (161 couples) reported on their own well-being, and their child’s functioning. Mothers reported higher levels of distress compared with fathers, and child behavior problems predicted psychological distress for both mothers and fathers. We found little evidence of child functioning variables affecting mothers and fathers differently. Gender differences in the impact of child autism on parents appear to be robust. More family systems research is required to fully understand these gender differences and the implications for family support.

Active Support: Development, Evidence Base, and Future Directions

Active Support is a person‐focused model of care for people with an intellectual disability who live in community‐based small homes. The model aims to improve each persons quality of life by maximizing participation in all types of activities of daily life with appropriate support from staff. In this chapter, we describe the basic characteristics of Active Support, its relationship with Normalization theory and Applied Behavior Analysis, and the evidence base for Active Support interventions. The methods available for training support staff and the latest developments in the Active Support model are presented. We conclude by discussing issues related to the adoption of Active Support by residential services and policymakers, and identifying dimensions that require further exploration. These future challenges include the translation of the Active Support model into real‐world settings and long‐term maintenance of intervention effects.

Is there a bidirectional relationship between maternal well-being and child behavior problems in autism spectrum disorders? Longitudinal analysis of a population-defined sample of young children.

The aim of this study was to examine whether the relationship between maternal psychological well‐being and behavior problems in children with an autism spectrum disorder (ASD) is bidirectional. Data were available at 9 months, 3 years, and 5 years old for 132 children with ASD, identified from a population‐representative sample of UK children. Three‐wave cross‐lagged models examined reciprocal effects between child behavior and maternal well‐being (psychological distress, physical health functioning, and life satisfaction). Results indicated that the relationships between maternal well‐being and child problem behaviors were not bidirectional. Specifically, findings suggested that while early behavior problems are not a risk factor for later maternal well‐being, maternal psychological distress, physical health limitations, and lower life satisfaction are risk factors for later child behavior problems. Autism Res 2013, 6: 201–211.