Support needs of ASD families in the Manawatu DHB catchment area : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Manawatū, New Zealand

Figure 1 Te Whare Tapa Whā removed for copyright reasons but may be accessed via https://www.maorimenshealth.co.nz/te-whare-tapa-wha-health-whare/Autistic Spectrum Disorder (ASD) is becoming increasingly understood as being both widely heterogeneous and complex for the individual on the spectrum. Similarly, families are also highly variable and complex; they are arguably the most important support unit a child with ASD has, with their own resources, constraints, values and beliefs. Service individualisation, which accounts for such variances within the individual, and the collective, is broadly seen as critical for service delivery success. To date, little research has gauged the extent of ASD service individualisation abroad, and an understanding of how this is done in Aotearoa New Zealand is absent. The intent of this research was to investigate whether or not existing services and supports target the uniqueness of both the individual with ASD, and their families to enable them to participate in society. In particular, a key focus was if services are appropriate, accessible and sufficient. To accomplish the intent of the research a concurrent triangulation mixed-methods design was utilised. Both quantitative and qualitative data was gathered from caregivers of autistic children – firstly, through an online survey featuring several lifespan themes, and subsequently, qualitative data was collected through caregiver interviews carried out with participants recruited from the MidCentral and Nelson Marlborough District Health Board (DHB) areas. Analyses of the prioritised qualitative data indicated that a variety of service delivery factors prevented families with autistic children from optimal functioning, and participating in society. Furthermore, systemic issues were theorised to be the underlying causes of several of the difficulties faced by autistic children, and their families. The importance of individualised care packages that meet the needs of the families spoken to was emphasised, and the 'wicked problem' (Stace, 2011) of services that are appropriate, accessible and adequate remains ongoing. Recommendations for meeting the needs of individuals with ASD and their families are discussed

Using affective avatars and rich multimedia content for education of children with autism

Autism is a communication disorder that mandates early and continuous educational interventions on various levels like the everyday social, communication and reasoning skills. Computer-aided education has recently been considered as a likely intervention method for such cases, and therefore different systems have been proposed and developed worldwide. In more recent years, affective computing applications for the aforementioned interventions have also been proposed to shed light on this problem. In this paper, we examine the technological and educational needs of affective interventions for autistic persons. Enabling affective technologies are visited and a number of possible exploitation scenarios are illustrated. Emphasis is placed in covering the continuous and long term needs of autistic persons by unobtrusive and ubiquitous technologies with the engagement of an affective speaking avatar. A personalised prototype system facilitating these scenarios is described. In addition the feedback from educators for autistic persons is provided for the system in terms of its usefulness, efficiency and the envisaged reaction of the autistic persons, collected by means of an anonymous questionnaire. Results illustrate the clear potential of this effort in facilitating a very promising autism intervention

A normal paranoia? The emergence of distrust between parents of autistic children and public officials

This paper explores the development of distrust and paranoia among parents and carers of autistic children in their interactions with public officials charged with such children’s diagnosis, education and care. The suspicion and distrust framework of Fein and Hilton (1994), and Kramer’s typology of organisational paranoia (1998, 2001) are used to show how distrust impacts on client experiences. Antecedents of distrust are identified, and the ‘normalcy’ of paranoia in this context is demonstrated. These findings should permit public sector staff dealing with parents and carers of autistic children to address such perceptions and build trust where little seems to exist

Parents' future visions for their autistic transition-age youth: hopes and expectations

Researchers have documented that young adults with autism spectrum disorder have poor outcomes in employment, post-secondary education, social participation, independent living, and community participation. There is a need to further explore contributing factors to such outcomes to better support successful transitions to adulthood. Parents play a critical role in transition planning, and parental expectations appear to impact young adult outcomes for autistic individuals. The aim of this study was to explore how parents express their future visions (i.e. hopes and expectations) for their autistic transition-age youth. Data were collected through focus groups and individual interviews with 18 parents. Parents' hopes and expectations focused on eight primary domains. In addition, parents often qualified or tempered their stated hope with expressions of fears, uncertainty, realistic expectations, and the perceived lack of guidance. We discuss our conceptualization of the relations among these themes and implications for service providers and research.Accepted manuscrip

A proposed framework of an interactive semi-virtual environment for enhanced education of children with autism spectrum disorders

Education of people with special needs has recently been considered as a key element in the field of medical education. Recent development in the area of information and communication technologies may enable development of collaborative interactive environments which facilitate early stage education and provide specialists with robust tools indicating the person's autism spectrum disorder level. Towards the goal of establishing an enhanced learning environment for children with autism this paper attempts to provide a framework of a semi-controlled real-world environment used for the daily education of an autistic person according to the scenarios selected by the specialists. The proposed framework employs both real-world objects and virtual environments equipped with humanoids able to provide emotional feedback and to demonstrate empathy. Potential examples and usage scenarios for such environments are also described

Autism and Communication: A Phenomenology of Parents’ Perspectives

Autism spectrum disorders (ASD) are characterized by language impairments and are often treated with a variety of communication interventions. In addition to these interventions, the parents of autistic children have to learn how to care for and communicate with their children on a daily basis, especially when their children do not speak. This study made use of phenomenological investigation techniques to explore (1) what parents understand about communication with their nonspeaking autistic children and (2) what particular strategies they find to be effective. Six mothers of autistic children were interviewed, and resulting themes were divided according to parents’ understandings and the formal and informal strategies they use. Implications for practice and future research are given