The Sisters\u27 Experience of Having a Sibling with an Autism Spectrum Disorder

This dissertation consists of two articles. This first article is a literature review identifying studies of autism spectrum disorders and sibling relationships published in the past 10 years. This search strategy identified 16 articles for inclusion in this review and conveyed the following main outcomes: a) parental factors influence sibling relationship and typically developing child, b) behavioral interactions/problems affect the quality of the sibling relationship, c) genetic factors have varying impact on diagnosis, and d) effects/outcomes for typically developing sibling are both positive and negative. This review supported the call for a better understanding of the family factors on the sibling relationship, as well as highlighted the absence of qualitative studies that include the voices of children and their siblings regarding their relationship experience. The second article reports on a qualitative study exploring the experiences of children who have a sibling with an autism spectrum disorder (ASD) using phenomenological methodology. The aim was to develop a better understanding of how the unique experience of having a sibling with ASD may alter, impact and enrich the lives of siblings. Data were collected through participant interviews, photographs, and drawings. The data analysis revealed the following themes: a) understanding of ASD, b) challenges and benefits of having a sibling with an ASD, c) relationships and interactions with others, d) attunement and unique connection, and e) advocacy and acceptance. The findings have implications for therapeutic practice, education, and research involving families with children when one child is diagnosed with an ASD. The electronic version of this dissertation is available in the open-access OhioLink ETD Center, www.ohiolink.edu/et

Inner Strength In Mothers Of Children With Autism Spectrum Disorders: Oral Histories

The purpose of this oral history study was to describe the lived experiences of mothers of children diagnosed with autism spectrum disorders (ASD) and to further inform the Theory of Inner Strength in Women (TIS) (Dingley & Roux, 2014). Postmodern feminist oral history methods were used to answer the research questions which included: 1) What are the lived experiences of mothers of children diagnosed with autism spectrum disorder (ASD)? and 2) How do these experiences further inform TIS? Interviews were manually coded directly onto the digital audio files using NVivo11Plus qualitative data management software. Three chronologic phases were identified among the 10 narrators interviewed for the study, including in the beginning, everyday ASD, and afterward. Overarching themes identified for each chronologic phase. The phase afterward only occurred after a chronologic, physical, or imagined distance from day-to-day activities and responsibilities of parenting a child with ASD. Mothers of children with ASD who participated in this oral history study did not achieve the outcome of the TIS, of living a new normal if they were not had not had the chronologic, physical, or imagined separation from day-to-day parenting that mothers in the afterward phase did. They did, however, tell stories which illustrated dimensions of inner strength. The findings were consistent with previous research related to mothers of children diagnosed with ASD, but also makes a unique contribution in terms of implications for nursing practice and recommendations for policy. The data collected for the study has also been entered into the historical record for use by future qualified researchers

Transition-aged autistic youth : functioning, quality of life, and internet-delivered psychoeducation

Background: Transition-aged autistic youth, ranging from 16 to 25 years of age, often experience challenges in functioning and have a diminished quality of life (QoL). Several factors have been reported to be associated with these outcomes. However, limited studies have examined the self-reporting of transition-aged autistic youth regarding these outcomes, and few have analysed the specific impact of autistic traits and mental health problems on functioning and QoL. To enhance autism knowledge, promote active participation in healthcare, and improve QoL, psychoeducation is commonly recommended as an initial intervention following an autism diagnosis. Aims: The aim of study I was to investigate self-reported functioning and QoL in transition-aged autistic youth and to analyse the relative importance of associated factors on the two outcomes. The aims of studies II and III were to evaluate a new internet-delivered psychoeducative intervention (SCOPE) by investigating (1) feasibility, evaluating intervention completion, credibility and satisfaction (study II); and (2) the pragmatic effectiveness of SCOPE (study III). Methods: In study I, 140 transition-aged autistic youth were interviewed about their functioning and provided self-rating questionnaires about QoL. In addition, participants rated their autism symptom severity, symptoms of mental ill-health and answered a questionnaire on demographic details. We analysed functioning and QoL scores using descriptive statistics. We analysed associations between all variables, followed by entering the significant associations as independent variables into a linear regression model with either functioning or QoL as the dependent variable. In studies II and III, we evaluated SCOPE – containing eight autism-themed modules with weekly digital therapist support. For study II, we recruited n = 28 participants, aged 16-25 years. We evaluated feasibility through intervention completion rates, credibility using a self-report scale and satisfaction using module evaluations. We analysed preliminary effects regarding autism knowledge, symptoms of mental ill-health, life satisfaction and acceptance of diagnosis, collected at pre-, post-intervention and three-month follow-up. In study III we included n = 141 participants, aged 16-25 years, to be randomised according to 2:1:1 to SCOPE, self-study online of informative autism websites, or treatment as usual (TAU). The primary outcome of autism knowledge, and the secondary outcomes of symptoms of mental ill-health, QoL and acceptance of diagnosis were assessed at pre, post and follow-up. Results: In study I, participants reported low functioning, on the 90th percentile compared to general population norms, indicating significant disability, and rated low overall QoL. The predictors that contributed the most to functioning were autism symptom severity and symptoms of anxiety, followed by gender and ADHD-diagnosis. Meanwhile, higher QoL was predicted by fewer anxiety and depression symptoms, as well as having friendships but not by autism symptom severity. In study II we observed 79% completers, as well as good treatment credibility and treatment satisfaction. Additionally, autism knowledge was increased post-intervention. These results were supported by findings in study III, where we found that SCOPE and self-study, but not TAU, increased autism knowledge post-intervention (primary outcome). However, the self-study participants' knowledge scores returned to baseline at the three-month follow-up. SCOPE participants had increased autism knowledge at follow-up compared to self-study and TAU, and the increase in knowledge was not coupled with significant changes in mental health problems. SCOPE participants reported improved QoL (secondary outcome) at post-intervention and three-month follow-up compared to both control conditions. Conclusions: We highlight that functioning and QoL are predicted by several factors, necessitating a comprehensive assessment of transition-aged autistic youth, including information about autism traits and mental health problems, to plan tangible interventions. The SCOPE trials suggest that the internet-delivered psychoeducational intervention SCOPE is a feasible first-line intervention in terms of treatment completion. Further, SCOPE could increase youths’ autism knowledge and improve QoL

Children with autism spectrum disorder in the context of Arab countries and cultures

The field of Autism Spectrum Disorder (ASD) in the Arab world is new. The dearth of ASD research in the Arab world is well recognised. There were no data available in the field of ASD in the Arab context collectively. Therefore, ASD researchers should attempt to discover the state of ASD from the Arab perspective. This thesis has attempted to expand our knowledge of the field of ASD in the Arab context, in particular children with ASD and their families. In Chapter 1 an introduction on Arab countries was presented including geography, religion, language, culture, and information about typical family systems. Further, the current state of ASD in Arab countries and cultures was discussed in terms of its diagnosis, prevalence, services available for individuals with ASD, and Arab parents’ stress and needs profiles. Four empirical studies then followed (Chapters 2, 3, 4, 5). In the first study (Chapter 2) a systematic scoping review of social, educational, and psychological research on individuals with ASD and their family members in Arab countries and cultures was undertaken, highlighting many unexplored areas for research. Chapter 3 then presented an investigation of support needs of Arab families of children with ASD living in the United Kingdom (UK). Chapter 4 explored experiences of special educators from a special school on using a structured numeracy intervention with their pupils with ASD. The final study (Chapter 5) then carried out an initial evaluation of a structured numeracy intervention with children with ASD in Arab families living in the UK by training and supporting their parents to deliver the intervention at home. In Chapter 6 the findings from the four empirical studies were discussed, along with their implications for practice and future research. Overall this thesis has contributed new knowledge in relation to the field of ASD in the Arab context

Onboarding Autism Employees in Technology Industry

The autism spectrum disorder (ASD) population experiences high unemployment, underemployment, and job turnover. Many people with autism have exceptional skills in areas, such as science, mathematics, and art. Companies in the technology industry are interested in tapping into the ASD talent pool because the industry cannot find enough qualified job applicants to meet the hiring demand. Few studies have focused on understanding how to help onboard ASD employees. Understanding the onboarding process can help technology firms retain ASD employees. In return, retaining this talent pool in the technology industry can continue to bring innovation. This research examined how a workplace circle of support for new ASD employees increases the success of their job onboarding. It attempts to answer the research question: “How can technology companies successfully onboard new ASD employees?” This study used the qualitative case study method to investigate how a hi-tech manufacturing factory onboarded their ASD employees successfully. It identified a blueprint of the onboarding practice for ASD employees: (1) collaborating with an external agency with expertise, (2) encouraging self-disclosure through an official autism hiring program, (3) monitoring the performance of ASD employees closely, (4) connecting management with a personal circle of support, (5) paying special attention on the career development of ASD employees. The finding of this research contributes to the body of knowledge on the onboarding process for neurodiversity employees

Understanding the use of tablet devices in the classroom when teaching a group of learners diagnosed with autism

The increasing number of individuals diagnosed with autism, the shift in educational paradigms, and technology advances that allow affordability and accessibility were the motivation behind this study. Learners with autism have the potential to develop social and emotional skills as well as increasing motivation for learning while using technology, in particular tablet devices (i.e., iPads) as instructional tools. The purpose of this case study was to better understand the use of technology (in particular, tablet devices) to teach mathematics to a group of learners diagnosed with autism. Two research questions guided this study: (1) How do the motivational principles of the ARCS model impact the learners\u27 motivation with classroom activities (i.e., with excitement? apathy? sense of accomplishment)?; and (2) How do learners interact with technology used in the classroom (i.e., as an instructional tool? as a rewarding mechanism? as an entertaining strategy)? Moreover, the hope is to potentially gain more awareness into the motivational impact tablet devices can have on learners on the autism spectrum concerning engagement and participation in learning activities. Participants in this study were five children diagnosed with autism between the ages of 8 and 11 who attended a middle school located at a large school district in a metropolitan area of a U.S. Midwestern state. The learners participated in a paper-based mathematics activity as well as interacted with an iPad to work on mathematics concepts. Observations and opportunistic interviews with learners and teacher were conducted. An in-depth semi-structured interview was also done with the classroom teacher. In attempt to explore the research questions, data were analyzed using the Interpretive Descriptive qualitative research analysis method. Based on that analysis four themes emerged: (1) the motivational use of the tablet device in the classroom, (2) the classroom activities\u27 impact on learners\u27 social interactions, (3) learners\u27 behavioral changes resulting from change in classroom routine, and (4) teacher\u27s motivational strategy. The overall study provided an understanding of the motivational impact tablet devices potentially have on learners on the autism spectrum concerning engagement and participation in learning activities. The impact of technology was contingent on its strategic instructional or reward mechanism implementation in the curriculum. The study revealed that technology in general and tablet devices in particular are used in the classroom as reward mechanisms and entertaining strategies to seize and retain the learners\u27 attention in order to achieve instructional goals. The findings also revealed how the learners\u27 conceptual levels affect their response to the reward and influence their social behavioral skills that could become uncontrollable. Additionally, the findings raised awareness concerning the learners\u27reactions to the change in their daily structured schedule and revealed some practices to manage learners\u27 behaviors

A Phenomenological Study of the Lived Experiences of Parents of Young Children with Autism Receiving Special Education Services

Over the past two decades reported rates of autism have steadily risen. The current incidence is 1 in 68 children. While autism can be reliably diagnosed at 18 months in most children with the condition, specialized autism treatment rarely begins before a child\u27s third or fourth birthday. As screening and diagnosis procedures improve so does the need for effective early interventions for autism. Researchers and professionals have expressed a growing concern over the need for effective early interventions for infants and toddlers with autism. At the same time, there is a dearth of qualitative research exploring the needs and experiences of parents with a very young child with autism. Employing a phenomenological framework, the purpose of this study was to investigate the lived experiences of parents of a young child with autism receiving early special education services. Unstructured interviews and photo elicitation were used to generate rich, detailed descriptions of the phenomenon. Data analysis from photographic images and narrative dialogues illuminated six essential themes across participants: (a) parents as pioneers: forging the way for future families; (b) making the journey as a family; (c) navigating uncharted service systems; (d) overcoming challenges and obstacles; (e) resilience, ingenuity and hope; and (f) reflecting on the first three years and looking forward. Participants expressed that they felt this study gave them a voice in the research literature. This study is one of the first to investigate the lived experiences of parents as they seek and secure autism services for their child under five with autism

The Labyrinth of Autism: Heuristic Journeys of Fathers Who Have a Child on the Autism Spectrum

The relationship between a father and his child on the autism spectrum (AS) is a life changing and powerful experience. However, there is a paucity in the literature about fathers and their experiences with raising a child on the AS. This research study explored the phenomenological experiences of fathers who have a child on the autism spectrum through the use of heuristic inquiry. In this study, I conducted interviews with 10 fathers whose children had an official AS diagnosis. By using Seidman’s three separate, semistructured interview method, this study highlighted fathers’ experiences and provided greater understanding into their lives. Seidman’s interview method provided opportunities for the fathers to reveal the truth in their lived experiences. They revealed their joys, sorrows, and moments that have shaped their lives. The study gathered data in key areas and are organized by the findings that emerged. These findings are organized by subquestions and include: (a) fathers’ reactions before and after receiving a diagnosis, (b) the new reality the fathers experienced, (c) the roles played by fathers in their children’s lives, (d) fathers’ views on disability, (e) the impact of the fathers’ beliefs on their views of their child and autism, (f) the experiences of fathers with two children on the AS, and (g) fathers’ experiences of personal growth. The findings in this study are significant and show the continuing commitment that fathers who have a child on the AS have regarding their children. As autism prevalence rates continue to rise, this study illustrates the need for further research on fathers who have a child on the AS