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Reimaging Autism: Building Strength-Based Approaches to Autism Social Work Using Design-Based Research

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Reimaging Autism: Building Strength-Based Approaches to Autism Social Work Using Design-Based Research Reimaging Autism: Building Strength-Based Approaches to Autism Social Work using Design-Based Research Author South, Grant T Published 2020-11-09 Thesis Type Thesis (PhD Doctorate) School School of Human Serv & Soc Wrk DOI https://doi.org/10.25904/1912/4009 Copyright Statement The author owns the copyright in this thesis, unless stated otherwise. Downloaded from http://hdl.handle.net/10072/399430 Griffith Research Online https://research-repository.griffith.edu.au Reimaging Autism: Building Strength-Based Approaches to Autism Social Work using Design-Based Research Grant Thomas MacLea South BA, MA, MSW School of Human Services and Social Work, Griffith University Submitted in fulfilment of the requirements of the degree of Doctor of Philosophy 16 June, 2020 ii Abstract Autism Spectrum Disorder (ASD) or autism, is often misrepresented and misunderstood by social workers, other professionals and community stakeholders who may hold antiquated views, or outdated knowledge. This is evidenced through the commonly repeated deficit-biased view of autism as a singular distinct genetic “disorder”, impacting on an individual’s neurodevelopment in undesired ways with varying degrees of severity and infliction. This view often exemplifies the sole source of informed knowledge regarding autism. In contrast, recent neurogenetic research advances that autism is a multiplicity of genetic changes unique to each individual. Further, as mentioned by Casanova (2019), autism-genes are very old, so ancient they are shared across species and have been involved in the processes of adaptation, development and evolution. Additionally, as advanced by Polimanti & Gelernter (2017), autism-genes have undergone natural selection across human societies throughout human evolutionary history due to their various cognitive enrichments. Recent research in neuropsychiatry and neuropsychology reports unique autism-associated cognitive strengths. Autists, particularly children, often demonstrate non-linear developmental trajectories that continue to grow with greater experience, maturity and opportunity. The purpose of this doctoral research has been to embrace these multidisciplinary findings as new professional knowledge for autism-focused strengths-based practice. This has been undertaken through an exploration of reported lived experience, and related psycho- physical, socio-cultural and socio-economic life-domains, in the development of a holistic ecological strengths-based prototype. To the best of my knowledge, this study has broken new ground through its use of design-based research (DBR) in social work doctoral research. Modified use of DBR iii for doctoral studies has been followed, limited to its first two phases, the first phase, a needs and context analysis and the second phase of prototyping new design. The prototype model is intended to be evaluated and further refined in its design through the third DBR phase undertaken as post-doctoral research. The study’s initial needs and context analysis included consultation with an expert panel and collaborative discussion with a group of experienced social work colleagues currently working in disability support services. The prototyping design phase included two iterations of DBR. The first iteration featured as Study 1 undertook a meta-ethnography of eight purposely selected case studies drawn from the self- reported experiences of successful Autists available in the public domain. The second iteration featured as Study 2 undertook applied thematic analysis of collected data from twelve recruited participants representing three distinct stakeholder groups. Group-1 consisted of four adult Autists, 18+ years of age, with a diagnosis of an autism spectrum condition reportedly in the normal to gifted IQ range. Group-2 consisted of four adult family group participants, two of whom were parents of two Autist Group Participants. Group-3 consisted of four social workers with experience in autism support. The second iteration data (Study 2) was collected using two developed research tools, a short survey, and an in-depth semiformal interview guided by ten open questions. Collected data of both iterations were coded using NVivo 11 and NVivo 12 software, respectively. The findings of the first iteration (Study 1) revealed that four developmental themes were shared across the eight selected case studies: early special interests; self- awareness; development of personal strategies; and convergence of these three with social opportunity. The themes identified in the first iteration were instrumental in drafting design principles for the second iteration. iv The findings of the second iteration (Study 2) revealed that all stakeholder participants recognised that Autists possess intrinsic strengths, which can lead to the development of talents, abilities and skills for their potential employment or the creation of cultural products. The findings of the first and second iteration further revealed various design elements that shaped the study’s two design artefacts. This doctoral study concludes that reimaging autism as a strengths-based psychosocial approach would be beneficial for Autists, their family members, and the wider community. It is recommended that new professional knowledge of autism and strengths-based practice be integrated into social work education and disability studies. A recommendation of the doctoral study is a two-way approach to community development through relationship-building between Autists with special interests that can be crafted via education and vocational training as employable skills via linkage with experienced mentors, instructors or local groups possessing relatable skills and interests in their community. Experienced mentors and instructors may potentially include semi-retired or active retired community members possessing skills in the professions, trades or arts who seek to maintain their community participation. A further recommendation is that strengths-based knowledge of autism is reflected in the development of new social policy and practice in the areas of equity, diversity, and social justice for improved health, education and training, housing, employment, and criminal justice outcomes. v This work has not previously been submitted for a degree or diploma in any university. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made in the thesis itself. Grant Thomas MacLea South 22 May, 2020 vi Table of contents ABSTRACT ............................................................................................................................... II TABLE OF CONTENTS .......................................................................................................... VI LIST OF FIGURES AND TABLES ....................................................................................... XV ACKNOWLEDGEMENTS ................................................................................................ XVIII PROLOGUE ............................................................................................................................ XX MY EARLY LIFE ............................................................................................................. XX LEAVING SCHOOL, THE NEED TO FIND WORK, AND STUDY AS A MATURE AGE STUDENT ................................................................................................................................................... XXII ACCEPTANCE OF NEURODIVERSITY AND IDENTITY REPAIR ......................................... XXII RETRAINING AS A SOCIAL WORKER TO UNDERTAKE AUTISM ADVOCACY .................. XXV KEY TERMS ...................................................................................................................... XXVII CHAPTER 1 INTRODUCTION ................................................................................................ 1 INTRODUCTION ........................................................................................................................ 1 OVERVIEW OF AUTISM, ITS PREVALENCE AND PRESENTATION ......................................... 2 Sensory Sensitivity, Processing, Mutism, and Mental Health ............................................... 4 CONTEXT OF THE RESEARCH ............................................................................................ 5 The Biomedical Deficit Lens on Autism and its Effects ........................................................ 7 Autism Social Work to Date .................................................................................................. 8 Historical and Contemporary Perspectives on Autism ......................................................... 9 Prejudice and the Insistent Quest for Normalcy ................................................................. 12 Deficit Perspectives of Autism in Current Social Work Language and Practise ................ 15 Critical Questioning of Deficit-Biased Biomedical Terms in Social Work Literature ........ 18 The Significance of Deficit Views and Language for Social Work ..................................... 19 DISABILITY RIGHTS ........................................................................................................ 22 AIMS OF THE STUDY AND RESEARCH QUESTIONS ........................................................... 24 Research Questions ............................................................................................................ 26 SIGNIFICANCE
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