Autism is one of the most common developmental disabilities and it is extremely costly for societies, families and individuals. When a child is diagnosed their family can be overwhelmed by both their child’s challenging behaviours and a plethora of advice from a deeply divided professional community. There are more controversial and unsubstantiated treatments for autism than any other childhood disorder. All these factors lead to high levels of parental stress. Professionals working with families need to promote evidence-based early interventions and to educate parents to be informed consumers, but they also need to listen to families. Joint attention (JA) has been recognized as a pivotal behaviour to target in early intervention as early deficits in JA are one of the first markers of this disorder. This study examines a possible model; a home-based, parent-mediated program, to meet both parents and children’s needs. This study asked 4 inter-related questions. It asked if this community-based “translational” program could increase the children’s JA behaviours and whether these changes would lead to global changes in cognitive, language and behavioural development. It asked about the parents’ perceptions; was the program acceptable, effective and stress reducing. Finally it asked about the child, parent and family factors that influenced outcomes. Six children with autism, aged between 3 and 4 years, and 8 parents participated. The program was a home-based, manualized,20 session program that focused on coaching the parents to teach their children joint attention behaviours. It used a transactional developmental framework as these behaviours are inter-personal and need to be taught within the child’s natural ecology, and in developmentally appropriate sequences. It also incorporated behavioural techniques as parents need to be able to direct their child’s attention as well as follow it. This study used a mixed methodology. It combined observational data from video-coding of parent-child play sessions (using a single-subject, multiple baseline design) with data from norm-referenced standardized assessments. It also gathered qualitative parent interview data. Visual analysis of graphs and statistical analysis of coded data showed overall significant changes in the children for a range of important social-communicative behaviours. They all increased their responding to joint attention, facial gazing, and positive emotion, and they decreased their parallel play. Four of the six children made significant changes in their JA related behaviours, changing in over 9 out of 11 behaviours measured. The three younger children who made the most changes in JA behaviours also made global developmental gains in cognition, language and behaviour. All parents endorsed the program, seeing behavioural changes in themselves and their children. But some families also spoke of difficulties, especially having enough time, energy and creativity to implement daily sessions with their child. Six of the 8 parents had high clinical levels of parenting stress and this did not decrease over the intervention. Only parents already in the normal range decreased their stress. The key child factors involved in positive child outcomes were the age of the child, the absence of clinical range externalizing behaviour problems, and IQ. The key parent factors were parenting stress scores in the normal range and commitment to the program. The key family factors were the presence of social support and the absence of a second child with autism in the family. All these factors were interactional. This study contributes to a growing evidence-base about the effectiveness of mixed developmental and behavioural approaches to autism and highlights the importance of assessing parental stress, child externalizing behaviour problems and social supports in order to customize the type of intervention parents can deliver in the home. It provides a model for the translation of evidence-based findings into the “real world” community setting of the practitioner.
|Date of Award||2013|
|Supervisor||Chris Kilham (Supervisor) & Diana Boswell (Supervisor)|