'Thrown Out Into the World': Transition to Post Schooling for Autistic Young People

Autistic Young People in Australia experience poorer employment outcomes upon transition out of school than their non-disabled peers. This can lead to significant disadvantages in terms of financial, social, physical and mental well being as they may not be able to experience the benefits of work. the transition from school to post-school has been identified as a period where Autistic young people do not receive adequate support and, regrettably, understanding how to improve support remains a gap in the research literature. The introduction of the National Disability Insurance Scheme (NDIS) changed the funding landscape for Autistic young people in terms of the supports they may be eligible to receive, leaving potential gaps in support at a critical time in an Autistic Young Person's life. This research was co-produced and adopted a qualitative methodology and aimed to understand the perspectives and experiences of key stakeholders (Autistic Young People, Parent/Carers, Educators and Disability Employment Service Providers) around the transition of Autistic young people from school to post-school education and employment options. Reflective Thematic Analysis was adopted to analyse transcribed interview data from 39 participants across the four stakeholder groups. Key Findings indicated the uniqueness of young autistic peoples' experiences and their desire to prove themselves as well as the importance of harnessing autistic strengths and interests and the need for early, collaborative transition planning. It calls attention to gaps in transition, including delayed planning, limited and inconsistent supports, siloed approaches to transition planning, strain on families and the impact of ongoing stigma and discrimination toward neurodivergent people. Recommendations are posed to optimise post school transition. This study contributes new knowledge to the evidence base surrounding the transition of Autistic Young People out of school. It highlights recommendations for research, policy, education, and practice to improve outcomes for Autistic Young People

Program evaluation of an adapted PEERS® social skills program in young adults with autism spectrum disorder and/or mild intellectual impairment and social skills difficulties

Rationale, Aims and Objectives: Social challenges are common for young adults with autism spectrum disorder (ASD) and/or mild intellectual impairment, yet few evidence-based interventions exist to address these challenges. PEERS®, the Program for the Education and Enrichment of Relational Skills, has been shown to be effective in improving the social skills of young adults with ASD; however, it requires a significant time commitment for parents of young adults. As such, this mixed-methods study aimed to investigate the experiences of young adults, parents and PEERS® social coaches participating in an adapted PEERS® program, and to evaluate its acceptability and efficacy. Method: Young adults with ASD and/or mild intellectual impairment participated in a 16-week PEERS® program. Parents and PEERS® social coaches attended fewer, condensed sessions, where they learnt program content to support the young adults' social skill development at home and in the community. Focus groups were conducted post intervention. Quantitative pre−post assessment using the Social and Emotional Loneliness Scale for Adults, the Test of Young Adult Social Skills Knowledge, and Quality of Socialization Questionnaire-Young Adults was completed by young adults. The Social Responsiveness Scale Second Edition was completed by young adults and their parents. Result: Qualitative results revealed that, taken together, young adults, parents and PEERS® social coaches all felt that the adapted PEERS® program was ‘challenging, but worth it’. The program was acceptable with a 93% attendance rate across all sessions. Whilst young adults' perceptions of their own social functioning did not change post-intervention, their knowledge of social skills content improved significantly (p < 0.05). Parent perceptions of young adults' social responsiveness also improved (p < 0.05). Conclusions: Social skill knowledge, social responsiveness, and social engagement improved significantly following the completion of the adapted PEERS® program. It was deemed acceptable and worthwhile by young adults, their parents and PEERS® social coaches

Perceptions of adulthood by 18-25 years old emerging adults in Australian metropolitan and rural settings

Roles and occupation priorities and demands change over the lifespan. Emerging adulthood (EA) is proposed to be a distinct developmental phase. Some Australian occupational therapy researchers have been using EA in clinical samples but little is known about EA in typically developing Australians

"Irrelevant and unproductive" : what emerging adults with cerebral palsy think of standardised participation measures

Standardised and non-standardised assessments are used by occupational therapists to evaluate participation of people with cerebral palsy (CP). The perspective of emerging adults with CP regarding standardised participation instruments is not known

Narrative analysis

Narrative inquiry methods have much to offer within health and social research. They have the capacity to reveal the complexity of human experience and to understand how people make sense of their lives within social, cultural, and historical contexts. There is no set approach to undertaking a narrative inquiry, and a number of scholars have offered interpretations of narrative inquiry approaches. Various combinations have also been employed successfully in the literature. There are, however, limited detailed accounts of the actual techniques and processes undertaken during the analysis phase of narrative inquiry. This can make it difficult for researchers to know where to start (and stop) when they come to do narrative analysis. This chapter describes in detail the practical steps that can be undertaken within narrative analysis. Drawing on the work of Polkinghorne (Int J Qual Stud Educ. 8(1):5–23, 1995), both narrative analysis and paradigmatic analysis of narrative techniques are explored, as they offer equally useful insights for different purposes. Narrative analysis procedures reveal the constructed story of an individual participant, while paradigmatic analysis of narratives uses both inductive and deductive means to identify common and contrasting themes between stories. These analysis methods can be used separately, or in combination, depending on the aims of the research. Details from narrative inquiries conducted by the authors to reveal the stories of emerging adults with cerebral palsy, and families of adolescents with acquired brain inquiry, are used throughout the chapter to provide practical examples of narrative analysis techniques

Narrative inquiry and narrative analysis : practical application of techniques for occupational therapy research

Introduction: Narrative inquiry methods have much to offer within health research. They have the capacity to reveal the complexity of human experience; to understand how people make sense of their lives within social, cultural, and historical contexts. There is no set approach to undertaking a narrative inquiry, and a number of scholars have offered interpretations of narrative inquiry approaches. Various combinations have also been employed successfully in the literature. There are, however, limited detailed accounts of the actual techniques and processes undertaken during the analysis phase of narrative inquiry. This can make it difficult for researchers to know where to start (and stop) when they come to do narrative analysis. Objectives: This presentation will highlight practical steps that can be undertaken during narrative analysis, facilitated through discussion and examples of techniques used in a doctoral study that explored the stories of emerging adults with cerebral palsy. Approach: Drawing on the work of Donald Polkinghorne, both narrative analysis and paradigmatic analysis of narratives techniques will be discussed, as they offer equally useful insights for different purposes. Narrative analysis procedures reveal the constructed story of an individual participant, while paradigmatic analysis of narratives uses both inductive and deductive means to identify common and contrasting themes between stories. These analysis methods can be used separately, or in combination, depending on the aims of the research. Practice implications: Occupational therapists will be guided to make informed decisions around appropriate narrative analysis techniques to answer a range of qualitative research questions. Practical examples will facilitate therapists’ understanding of the steps involved in the actual “doing” of narrative analysis. Conclusion: Narrative inquiry methods, and narrative analysis techniques, can be useful for a wide range of occupational therapy research questions with the overall aim of understanding lived experience

Making my own path : journeys of emerging adults with cerebral palsy

Introduction: Emerging adulthood has been identified as a unique developmental stage within developed countries. Generally associated with ages 18-25, emerging adulthood is seen as a time of: identity exploration; instability; self-focus; a sense of feeling in-between; and possibilities. It is a time of profound change when people develop, review and update their plan for the future. While emerging adulthood is a journey of significant change and transition for all young people, it may be even more challenging for young people with a lifelong disability such as cerebral palsy (CP). Objectives: This research aimed to address significant gaps in knowledge around the individual stories of emerging adults with CP from their own perspective, and their collective experiences. Method: A qualitative, narrative inquiry was undertaken with eighteen participants with CP aged 18–25 years who lived in New South Wales. In-depth unstructured interviews were conducted to explore participants’ experience of emerging adulthood. Narrative analysis was used to construct detailed individual stories, highlighting the uniqueness of personal journeys. Analysis of narratives techniques facilitated development of themes from within and across stories. Results: Fifteen themes were developed from participant stories. These themes reflect the importance of concepts including identity, resilience, altruism, disclosure, mental health, friendships and relationships, education and employment, personal care and health services, transport, geographical location, funding, parental relationships, and the meaning of adulthood. Environmental barriers were prevalent within stories and themes, including: negative assumptions and pre-judgement by other people; discrimination; inaccessible environments; and inflexible services. Conclusion: This study is the first time that the stories of emerging adults with CP have been documented using narrative methodology. The findings provide livedexperience evidence to help inform policy, education, theory, planning and delivery of services and support. Implications for occupational therapy practice are presented

[In Press] Young people with intellectual disability speak out about life after school : "I want to do more in life than just… be a disability person"

Background: The transition from school to adult life is challenging for young people with intellectual disability. The study aimed to explore how young people with intellectual disability themselves experience the transition from school to adult life. Methods: A co-designed, qualitative study. Thematic data analysis of qualitative survey responses, semi-structured interviews, and focus groups with 27 young people with intellectual disability in three Australian states. Results: Participants found transition planning at school inconsistent or lacking and felt excluded from decision-making about their lives. Accessing meaningful services, training, and employment beyond volunteering was challenging and enduring, leaving participants in perpetual state of transition, feeling lost, and missing out of post-school adult milestones. Conclusions: Policy, system, and service gaps must be addressed with a nationally consistent and accountable approach that truly supports choice and control for young people with intellectual disability in transitioning from school into meaningful adult lives

Experiences and perceptions of families/carers of emerging adults with disability in relation to the National Disability Insurance Scheme and implications for occupational therapists

Introduction: The National Disability Insurance Scheme (NDIS) promises to support a better life for individuals living with significant disability and their families/carers. This includes families/carers of emerging adults aged between 18 and 29 years, who experience particular challenges associated with their role. These include stress during the transition from paediatric to adult health services, and trying to support their emerging adult child to build the increased independence customary of this life stage, while also balancing ongoing care needs. These challenges have potential for change through implementation of the NDIS, with possible benefits for both emerging adults and families/carers. However, there is currently no evidence pertaining to effectiveness of the NDIS in addressing these challenges in New South Wales (NSW). Objectives: This study explores the experiences and perceptions of families/carers of emerging adults with disability, in relation to the NDIS in NSW. Method: Data was collected for this qualitative study through an electronic survey consisting of predominantly open-ended questions. The responses of 24 participants were analysed using thematic analysis. Results: Three organising themes were identified. Families/carers of emerging adults with disability have found the NDIS to be a “backwards step” when compared to the previous state-funded system. Their workload has increased and many are concerned about the sustainability of annual planning requirements, highlighting the test of “stamina” required. Regardless, they remain optimistic about the NDIS’ “excellent intentions” and hopeful for the future, highlighted by the global theme “desperately hoping they will fix it”. Conclusion: The implementation of the NDIS in NSW has been challenging for families/ carers of emerging adults with disability, however optimism for future opportunity remains. Findings from this study highlight recommendations to shape future research, policy and service delivery surrounding the NDIS, including services provided by occupational therapists