published_or_final_version / abstract / toc / Clinical Psychology / Master / Master of Social Sciences

published_or_final_version / abstract / Psychiatry / Doctoral / Doctor of Philosophy

Autism occupies an extreme position among childhood pathologies due to its severity, duration and impact on the family. In this qualitative study, four primary caregivers of autistic children were interviewed regarding their experiences of the diagnostic process, their post-diagnostic adjustment, and how helping professionals can improve their service rendering to these families. This study utilised a phenomenological approach to look at primary caregivers as the best-informed authority to explore and describe their lived realities and experiences of raising their autistic children in South Africa. The rationale for a phenomenological approach in this study is that such an interpretative inquiry enables material to be collected and analysed within the specific context of the subjective realities of primary caregivers of autistic children in South Africa. The researcher utilised semi-structured, in-depth, face-to-face interviews as method of data collection. Each participant was interviewed over the course of three separate interviews. The themes and categories that resulted from a content analysis of the material were grouped into two broad fields of experience, namely: (1) experiences surrounding the diagnostic process; and (2) the pervasive influence of autism on different areas of family life. In terms of experiences surrounding children’s diagnosis, four themes were identified: (1) Being a new parent and making sense out of chaos; (2) Responsibility and blame; (3) Confusion and disillusionment during early experiences with helping professionals; and (4) Feelings about the diagnosis. The pervasive influence of autism on different areas of family life includes: (5) Strained family relationships; (6) Challenges of behaviour management and disciplining the autistic child; (7) Challenges of finding suitable resources for education and day-care; and (8) Maintaining the family unit and doing things as a family.

The project contributes to the significance of special education by providing information on how to identify early signs of autism in order to implement appropriate strategies as early as possible and by examining the effectiveness of early intervention programs. A quantitative and qualitative approach was used to measure the responses of parents and special educators regarding the importance of early detection of autism for early socialization of children before entering the school setting.

[Truncated abstract] There are few existing screening instruments designed to identify Autism Spectrum Disorders (ASD) at an early age, such as the Checklist for Autism in Toddlers (CHAT) and the Modified Checklist for Autism in Toddlers (M-CHAT). Unfortunately, many are limited in their ability to identify children at risk in the first two years of life while displaying an acceptable level of reliability. Given this limitation, the present study aimed to identify any additional early markers of ASD from either the retrospective analysis of early autistic symptomatology (parental report and video analysis of footage made before the diagnosis) or performance-based measures linked to different theoretical accounts of ASD. Specifically, measures addressing theory of mind, executive dysfunction and weak central coherence were developed. In the first study, parents of three groups of children those of typical development (n = 19, mean CA = 26 months), children with an ASD (n = 39, mean CA = 34 months) and children with developmental delay (n = 14, mean CA = 28 months) were interviewed about their child's early development. In the first study, parents of three groups of children those of typical development (n = 19, mean CA = 26 months), children with an ASD (n = 39, mean CA = 34 months) and children with developmental delay (n = 14, mean CA = 28 months) were interviewed about their child's early development. Several behaviours discriminated children with ASD from children with typical development and children with delayed development. ... A discriminant function analysis using the two factor scores indicated that Factor 1 discriminated the ADI-R groups, while Factor 2 scores did not add to the ability of Factor 1 scores to discriminate the ADI-R groups. Furthermore, while the finding that joint attention behaviours differentiated children with ASD from children with typical development and children with delayed development, more research is needed to determine if this impairment is a precursor of a theory of mind deficit or if this impairment and later appearing impairments in theory of mind are the result of a more global impairment in social-emotional approach behaviours. Additional research is also needed to determine the relationship between the early appearing deficits in joint attention and the impairments in social relating behaviours that appear to develop later in the chronology of ASD development and how both of these relate to the theory of mind hypothesis of ASD.

The incidence of autism has increased tremendously over the past 20 years; however, the tools used for diagnosis and educational identification have largely remained the same. Diagnostic and educational decisions are based on observations and interactions to identify hallmark skill deficits associated with autism. Research demonstrates behaviors are affected by the environment, and real-time data collection is more accurate than reflective methods. The problem is current autism diagnostic and educational identification tools lack essential features. The Autism Diagnostic Observation Schedule (ADOS), considered the gold standard, relies on contrived settings, and lacks an observational comparison to same aged peers. Autism behavior rating scales, rely on reflective data collection, and are not context specific. The purpose of this study was to gain feedback from stakeholders (clinicians, educators, parents) about the perceived efficacy and feasibility of a context-specific autism behavior rating tool with real time data collection methods for diagnosis and educational planning. Results showed stakeholders confirmed the perceived efficacy of the context-specific tool for improved accuracy for diagnosis, more specific information for educational planning, and increased understanding for parents to support their child's learning needs. Even though the tool was useful, stakeholder feedback also indicated the tool lacked feasibility for teacher use and may be better suited for administration by school psychologists or other trained professionals. The increased specificity and accuracy provided by a context-specific autism behavior rating tool has the potential to affect the future of autism evaluations and educational planning; thereby influencing the future life function of individuals with autism.

Abstract not available

M.A. (Counselling Psychology) / Mothers’ experiences of raising a child who has been diagnosed with autistic disorder or autism spectrum disorder are multifaceted and multidimensional. These experiences include both negative and positive aspects which at times occur simultaneously. The aim of this research was to explore three mothers’ lived experiences of raising a child who has been diagnosed with autistic disorder. This entailed their experiences prior to receiving a diagnosis of autistic disorder for their child to their present circumstances. A hermeneutic epistemological framework, which falls in the qualitative research approach, was used. Data were collected in the form of three written narratives and three interviews which were analysed using a hermeneutic epistemological framework and thematic analysis. The analysis of the data resulted in the identification of five metathemes: the journey towards a label, challenges, attempting to be a good enough mother, coping, and personal growth. The most prominent metatheme is the three mothers’ attempts to be a good enough mother to their child with autistic disorder. Furthermore, the metathemes seem to confirm that mothers’ experiences are multidimensional and multifaceted.

MPH / Department of Public Health / Autism spectrum disorder (ASD) is a life-long neurodevelopmental disorder, which does not affect the child only but the caregiver more. ASD characterized by impairments in social interactions, communication and repetitive behaviour. Therefore, caring for a child diagnosed with ASD can be a very challenging experience for caregiver especially when knowledge about the condition is limited. The aim of the study was to explore experiences of caregivers for children diagnosed with ASD in the Ehlanzeni District, Mpumalanga Province. The study adopted a qualitative approach, wherein data was collected using face-to-face semi-structured interviews, in which an interview guide was used. Participants were selected purposively from the three different schools and data was analysed using thematic content analysis. Twelve (12) participants were interviewed for the study. The caregivers’ children were aged 5-12 years. Ethical considerations and measures to ensure trustworthiness were adhered to throughout the study. The study findings indicated that caregivers for children diagnosed with ASD experienced psychological stress, social isolation and stigma, financial burden, lack of family support, services for children with ASD were perceived not to be accessible and available. The findings also indicated that there is limited knowledge of ASD amongst caregivers, health professionals and the community at large. Therefore, more awareness campaigns need to be done on ASD to increase knowledge on the condition. Furthermore, the study recommends that support groups for caregivers of children diagnosed with ASD should be formed and that information regarding a range of inexpensive interventions and educational programs should be made available for caregivers and their children, as well as continuous dissemination of information amongst caregivers. However, limited statistical information on ASD is available on the South African context. / NRF

Indiana University-Purdue University Indianapolis (IUPUI) / Consistent under-reporting of autism cases by Indiana physicians to the Indiana Birth Defects and Problems Registry (IBDPR) has made quality autism-related data very difficult to obtain (Indiana Birth Defects and Problems Registry [IBDPR], 2011). As a result, the Indiana State Department of Health (ISDH) currently also utilizes data from billing information that it receives from hospital discharges. However, such cases must be investigated further because autism is often merely suspected as a possibility in the discharge data. A chart auditor must therefore review the child’s chart to determine if the condition is confirmed. Meanwhile, the Indiana Department of Education (IDOE) has a different diagnostic procedure from physicians for determining whether a student has an Autism Spectrum Disorder (ASD), which qualifies him or her for special education. A physician diagnosis of autism does not guarantee that a child will receive special education from public schools. With all of these current complications surrounding autism, announced changes in the definition of autism by the American Psychiatric Association (APA) will likely have effects on both the special education field and the public health field. There is a possibility that children who had previously received special education could cease to maintain their eligibility and may find it difficult to obtain benefits. The IDOE may find it necessary to reevaluate their criteria for determining special education eligibility. Additionally, public health officials may see the definition changes affect the number of autism cases they perceive their populations to have, thus impacting community and policy decisions. This study was performed as an attempt to investigate and compare the sources used by the IBDPR to obtain autism data, and determine whether or not the resulting data creates an accurate depiction of the autistic population of Indiana. It was also performed to speculate whether a stricter definition of autism will result in a higher quality of data for the IBDPR and a more consistent view on the disorder between the ISDH and the IDOE. Perhaps from such consistency and simpler definitions, future recorded data will more closely resemble that of reality, enabling the ISDH to utilize the IBDPR to its full extent. Using current definitions for an exploratory analysis of data from the past five years, a discrepancy clearly exists between the IBDPR and the reality of the population of Indiana.