Mothers’ and Fathers’ Roles in Caring for an Adult Child with an Intellectual Disability

To date, there have been few studies of mothers’ and fathers’ roles in caring for their adult children with intellectual disabilities. The present study investigated the care-giving roles of mother and father couples caring for their adult offspring with an intellectual disability, their psychological health, and the demands and satisfaction of their care-giving roles. Twelve Anglo-Australian middle-aged mother and father couples with an adult child with intellectual disability (mean age?=?24 years) participated in semi-structured interviews about their care-giving roles and completed a series of questionnaires pertaining to care-giving difficulties and satisfaction, hassles and uplifts, and general health. Findings indicated that an extremely high proportion of both mothers and fathers were in the clinical range for social dysfunction, anxiety/insomnia, and somatic complaints, although levels of depression were relatively low. The present study found that mothers undertake more daily care-giving tasks than fathers, but that the range of tasks is similar. Mothers also reported significantly more care-giving difficulties and satisfaction than fathers. Associations between measures differed somewhat for the two parent groups, indicating the need for further exploration of both mothers’ and fathers’ experiences.     

Mastery Motivation in Children with Intellectual Disability: Is there Evidence for a Down Syndrome Behavioural Phenotype?

The main purpose of the current study was to provide empirical evidence to support or refute assumptions of phenotypic deficits in motivation for children with Down syndrome (DS). Children with moderate intellectual disability (MID) associated with etiologies other than DS were recruited in an extension of a previous study that involved children with DS and typically developing children. The participants were 29 children with MID and 33 children with DS who were matched on mental age to 33 typically developing children, aged 3–8 years. Mastery motivation was assessed on task measures of curiosity, preference for challenge and persistence, as well as parental reports. There were no significant group differences on the mastery motivation tasks. Parental ratings of mastery motivation differed, with typically developing children generally being rated more highly than each of the disability groups. The view that motivational deficits are part of the DS behavioural phenotype was not supported.     

From research to reality: Australian evidence-based practice in autism education

Many teachers are sporadic in using evidence-based practice (EBP) concerning students with autism spectrum disorder (ASD). Numerous reasons have been posited for this. However, no single study has worked to understand the relative importance of identified criteria in the EBP decision-making processes of teachers. Through the development of a new survey tool, the Evidence-Based Practice Innovation Survey (EBPIAS), an exploration of the decision-making process of Australian teachers in their adoption and cessation of EBP was undertaken. Teachers rated the perception that an EBP would meet the needs of their students as the most important criteria in determining their use of EBP. Conversely, the judgement that an EBP did not meet the needs of their student was the most important criteria in their decision to cease use. In comparing the relevant importance of identified criteria, teachers rated the perception of training as the second-lowest consideration in their decision to adopt and cease using EBP. Consequently, there may need to be greater promotion of, or information concerning, the training required by teachers for effective implementation supporting a more balanced and holistic approach in assessing criteria impacting the adoption of EBP by teachers in the first instance, potentially lowering cessation rates.     

The Importance of Self‐Regulation in Young Children With Down Syndrome

Adulthood brings with it responsibilities for making choices and decisions about one's own life. Individuals with Down syndrome, their parents and communities, have begun to expect that at least some of these responsibilities will be met by the person with Down syndrome. This will require a range of skills in managing one's own behaviour and these skills will need to be acquired in childhood. The Down Syndrome Research Program has begun a number of investigations into two important aspects of self‐regulation‐the capacity to delay gratification and mastery motivation. This paper describes the importance of these skills and habits of behaviour to those with Down syndrome and discusses the research to date.     

Parents’ views of an optimal school life: using Social Role Valorization to explore differences in parental perspectives when children have intellectual disability

Children with disability continue to experience disadvantage in their school lives; thus, the question of what makes up an optimal school life, and whether this is different for children with disability, becomes critical. This paper reports on research into parental views about an optimal school life and the usefulness of Social Role Valorization theory as a framework for exploring this issue. Six focus group interviews were used to collect data from 30 parents. Children of a variety of ages, with and without disability, were represented. All groups were similar in the aspects they regarded as optimal in a child’s school life. These fell into five categories: being connected, growth, personhood, basic needs, and happiness. Despite this similarity across groups, there were some notable differences in the detail; for example, parents of children with disability had a stronger focus on children being wanted, high expectations, and being seen as an individual.     

Down Syndrome Temperament: The Stereotype at Middle Childhood and Adolescence

MOTHERS AND TEACHERS of 94 children (53 boys) with Down syndrome, between 8 and 14 years of age, rated the children on a temperament scale and provided an overall impression as to whether the child was difficult in comparison with other children. Maternal ratings on the Middle Childhood Questionnaire showed significant differences from standardization scores. Children with Down syndrome were given ratings as less active, more predictable, of more positive mood, less persistent, and more distractible. Some of these dimensions favour the amiable personality stereotype for the syndrome but low persistence was associated with maternal impressions of difficulty. There was little agreement between mothers and teachers regarding the individual children who were rated as being significantly easier or more difficult than other children. Results with a subgroup (n = 32) showed that externalizing behaviours were significantly related to both mother and teacher impressions of difficulty and that mothers also found intense, active, distractible behaviour difficult.