Introduction: Adolescents with Autism Spectrum Disorder (ASD) demonstrate poor health-related behaviors, such as nutrition, compared to their typically developed (TD) counterparts. With the occurrence of the COVID-19 pandemic and mandatory stay-at-home orders, such health-related behaviors may be complicated and there is a need to focus on feasibility and acceptability of in-person and remote-based nutrition programs. Methods: Eleven high school students with ASD were recruited to participate in a modified nutrition program utilizing Zoom software during COVID-19. The duration was once a week for four weeks, and concepts reviewed included shopping for healthy food on a budget, introducing non-perishable but nutritious food items, and food preparation safety measures. Results: Ninety-seven percent of participants attended the remote-based nutrition program, while 87% attended the in-person nutrition program. While in-person demonstrated benefits including face-to-face interaction and hands-on cooking, the remote-based component demonstrated a high degree of feasibility and acceptability. Half of the students felt their health-related behaviors were negatively impacted by COVID-19 but reported that the implementation of the remote-based nutrition program positively impacted their nutrition choices. Conclusion: The enforcement of health-related behaviors in adolescents with ASD is significant especially during disaster-related situations. Future research should focus on efficacy and intertwining methods of in-person and remote-based learning of a nutrition or other health-related behavioral interventions in this population.

Autism or autism spectrum disorder (ASD) is a multifaceted neurological condition that impairs social interaction, communication and behaviour. The current increase in the prevalence of ASD is alarming. A large population of parents is left searching for answers regarding their child’s developmental delays. Once their child has been diagnosed, they have to deal with the challenge of raising such a child. Parenting a child with ASD is particularly challenging for mothers as it has been reported that they struggle with poor health and wellbeing as well as high stress levels. Literature has also shown that the maternal interaction style impacts the prognosis for the child’s development, again highlighting the importance of the mother’s wellbeing. Several studies refer to the severe impact of ASD on the family as a unit, yet the unique challenges that mothers face are often overlooked. To address the wellbeing of these mothers, it is necessary to understand their experiences of their child’s diagnosis with ASD. This qualitative phenomenological study explored and described mothers’ experiences of their child’s diagnosis with ASD by using the Process-Person-Context-Time model from Bronfenbrenner’s bioecological theory as a framework. Unstructured interviews with seven mothers were conducted, voice recorded and transcribed. Data was analysed using thematic content analysis. Findings revealed four interrelated themes: 1) the mother’s experience of the interactions and relationships within her immediate family (Proximal Process), 2) the mother’s experience of her internal and external characteristics and resources (Person), 3) the mother’s experience of her environment (Context), and 4) the mother’s experience of the journey through time (Time). Bronfenbrenner’s theory in its matured form also proved to be of value in understanding these mothers’ daily lives and challenges. The key findings provide valuable insight that may inform professionals who develop support programmes aimed at mothers with ASD children or that may guide such professionals’ therapeutic interventions with mothers with ASD children. / MSW, North-West University, Potchefstroom Campus, 2015

Autism or autism spectrum disorder (ASD) is a multifaceted neurological condition that impairs social interaction, communication and behaviour. The current increase in the prevalence of ASD is alarming. A large population of parents is left searching for answers regarding their child’s developmental delays. Once their child has been diagnosed, they have to deal with the challenge of raising such a child. Parenting a child with ASD is particularly challenging for mothers as it has been reported that they struggle with poor health and wellbeing as well as high stress levels. Literature has also shown that the maternal interaction style impacts the prognosis for the child’s development, again highlighting the importance of the mother’s wellbeing. Several studies refer to the severe impact of ASD on the family as a unit, yet the unique challenges that mothers face are often overlooked. To address the wellbeing of these mothers, it is necessary to understand their experiences of their child’s diagnosis with ASD. This qualitative phenomenological study explored and described mothers’ experiences of their child’s diagnosis with ASD by using the Process-Person-Context-Time model from Bronfenbrenner’s bioecological theory as a framework. Unstructured interviews with seven mothers were conducted, voice recorded and transcribed. Data was analysed using thematic content analysis. Findings revealed four interrelated themes: 1) the mother’s experience of the interactions and relationships within her immediate family (Proximal Process), 2) the mother’s experience of her internal and external characteristics and resources (Person), 3) the mother’s experience of her environment (Context), and 4) the mother’s experience of the journey through time (Time). Bronfenbrenner’s theory in its matured form also proved to be of value in understanding these mothers’ daily lives and challenges. The key findings provide valuable insight that may inform professionals who develop support programmes aimed at mothers with ASD children or that may guide such professionals’ therapeutic interventions with mothers with ASD children. / MSW, North-West University, Potchefstroom Campus, 2015

Students with intellectual and other disabilities who age out of transition programs or graduate from high school may experience marginalization as young adults. There exists scant literature on the perceptions of parents about access to employment and services for their adult children with disabilities. The purpose of this qualitative study was to explore how parents perceived educational services, financial burdens, social isolation, and lack of access to employment for their children with intellectual and other disabilities. Critical disability theory and transformational theory constituted the study's conceptual framework. The research questions concerned how parents perceived access to services related to financial assistance, postsecondary education, employment, and vocational consultation. The design was a case study with a purposefully selected sample consisting of 5 parents from a Western U.S. state. Data sources included field notes, interviews, and artifacts. A field log, newspaper articles, and interview transcriptions were gathered, sorted, and categorized into themes. Results of the study revealed that employment gaps for adults with disabilities decreased with better knowledge about disability strengths, social capital, employer and employee diversity training, and competitive employment opportunities. A position paper was developed based on study findings, which was targeted to employers and included information on the reasons for a business to embrace diversity in the workplace. Business leaders' promotion of social enterprises that enable community inclusion and financial independence for people with disabilities may result in a positive paradigm shift towards equitable employment as a positive social change outcome.

Play is an important contributor to children’s development: it reflects, reinforces, and results in development (Johnson, Christie, Wardle, 2005). However, the tools available to support planning and measurement of play are not sufficiently detailed or focused on children with autism and severe learning difficulties (SLD). Play for children with autism is consistently identified as restrictive and repetitive. Although extensive research examines symbolic play, the content and structure of functional play, which is considered a valuable precursor of symbolic play, is rarely the subject of focused research (Williams, 2003; Lifter, Foster-Sanda, Arzamarski, Briesch, & McClure, 2011). Given the developmental potential that play presents, the aim of this study was to examine the functional play presented by children with autism and SLD, with a view to designing a play framework that enables teachers to support functional play development in the classroom. A pragmatic mixed methods approach was adopted across a three-stage study in three schools. Study 1 provides the background for creating a functional play framework, while Study 2 focuses on the creation of the framework through objective observations of the play activity of a total of 27 children with autism and SLD, as well as interviews with nine classroom teachers. Study 3 was a process of trialling the framework in two schools and collaborating with eight teachers to finalise the functional play framework, in particular by considering its usability. Data collected across the three studies provided a description of functional play that suggests it is more complex than traditionally defined. Four key areas of functional play were identified: interacting with one object; interacting with two (or more) objects; interacting with self; and interacting with the environment. Additionally, 12 subcategories were established as components related to functional play. Teachers reported that they could use the framework to baseline play, set targets and measure play progression for children with autism and SLD. The framework was also identified as a tool that supports classroom management and continuing professional development. The proposed framework facilitates the identification of small increments of progress and extends on other available play frameworks. By developing detailed descriptions of the play that children with autism and SLD present, the framework provides a greater ability to identify precise deficits and, more specifically, to target support in the area of play. Additionally, the collaborative approach with classroom teachers provides diverse viewpoints but also begins to merge the gap between researchers and practitioners in order to ensure a useful resource. Recommendations for further descriptive accounts, greater involvement of classroom professionals in the development of resources and additional trials of the framework are acknowledged.

The author examined current literature supporting the use of innovative, music-based interventions to support young children with autism spectrum disorder and other developmental disabilities engage in the things that they want, need, and desire to do. The author introduced Song-based Interventions for Navigating Gains in Occupational Therapy (SING-OT), as an innovative, music-based educational intervention program designed to support the engagement, participation, and performance needs of young children with disabilities. SING-OT uses an evidenced-supported, client-centered, and interests and strengths-driven approach. This proposed multi-phase program focuses on improving knowledge on the literature connecting evidence to song-based interventions and providing access to uniquely composed, occupation-inspired songs, that support children’s performance and participation needs. Additionally, conducting an initial feasibility study that assesses the effectiveness of task completion in a common personal hygiene and grooming task within the preschool setting was recommended. Future developments extend to improving caregiver health and wellness outcomes through training opportunities. The author provided a comprehensive program evaluation plan that highlights key stakeholders, a proposal for a single-subject study design, and implications of the program. The SING-OT program can be utilized as (1) an additional intervention tool for practicing occupational therapy practitioners and other professionals, (2) an avenue for interprofessional collaboration, and (3) a vehicle for improving the occupational performance outcomes among young children with disabilities.

Core symptoms of Autism Spectrum Disorder (ASD) impact the child's abilities to interact with others, especially with the primary caregivers. Most research has focused on investigating the mother-child dyad, but the paternal role in interaction with children with ASD is mainly unexplored (e.g., Rankin, Paisley, Tomeny & Eldred, 2019; Flippin & Crais, 2011). For this, the project's first aim is to examine paternal interactive characteristics and behaviors and compare father-child and mother-child interactions with children with ASD, delineating the strengths and weaknesses of both caregivers in a complementary system. Based on this investigation, we implemented a personalized and parent-specific early intensive intervention that may guarantee better developmental trajectories for children with ASD. Consequently, the project's second aim is to assess the impact of intervention with parental involvement through cognitive, socio-communicative, and dyadic behavioral measures using a longitudinal study with pre- and post-assessments. At this point, it is fundamental to evaluate how several traits of children and caregivers might impact the treatment response. To reach this aim, while assessing developmental trajectories, we wanted to identify a-priori individual differences at both child and caregiver’s level and dyad dynamics that may influence intervention outcomes. We identified markers of better developmental trajectories and discussed implications for clinical practice in providing practitioners with more information about areas to be targeted during the intervention.

Autism Spectrum Disorder (ASD) is a low-incidence disorder with high impacts on individuals, families, and society. School-based speech-language pathologists (SLPs) have tremendous responsibilities toward individuals with ASD, but pre-service SLPs are not adequately trained to fulfill these expectations. In order to reduce the widespread financial and social impact of ASD, school-based SLPs need to complete effective training to prepare them for the selection of established social-communication practices. One framework for the selection of individualized intervention is the Ziggurat Model (Aspy & Grossman, 2008). The following study used mixed methods to investigate the research question: “Does the ASD knowledge base of ASHA-certified school-based SLPs change when they complete an online training module based upon Aspy and Grossman’s Ziggurat Model? If so, what are those changes?” A pre-test post-test control group design demonstrated a significant difference in the experimental group’s and the control group’s pre-test post-test change scores, as demonstrated by an independent samples t-test (p=.039, 18df). Qualitative data analysis resulted in six themes. While the online training of Aspy and Grossman’s Ziggurat Model used in this study was an effective method with which to train school-based SLPs in using a comprehensive framework, more rigorous research is needed on this model relative to the selection of intervention.

Autism Spectrum Disorder (ASD) is a heterogeneous group of neurodevelopmental disorders that affects about 1% of the worldwide population and has a strong genetic component. Stereotyped behavior and restricted interests, as well as problems of social interaction and communication characterize ASD. Moreover, in 10% of cases, ASD occurs as a secondary condition in addition to a syndrome, such as Phelan-McDermid syndrome (PMS), which is associated with a great clinical variability. Among genetic factors, copy number variations (CNVs) are one of the most important. However, the clinical significance of many CNVs remains nuclear and there is an underrepresentation of small CNVs associated with ASD in the literature. In this context, this project aimed to 1) characterize large and small CNVs in Brazilian patients with ASD using an array-CGH previously customized in our laboratory. 2) Clinically and genetically describe a cohort of Brazilian patients with PMS, as well as to determine the frequency of this syndrome among Brazilian patients with ASD and other neurodevelopmental disorders. In result, we 1) further validated the customized array-CGH, 2) provided additional evidence of association with ASD for 27 candidate genes, 3) described 15 CNVs never reported in the literature in association with this disorder, 4) presented evidence that around 70% of CNVs found in our cohort are not polymorphism of our population and 5) reinforced the idea of shared molecular pathways among different neurodevelopmental disorders. In addition, we described for the first time a Brazilian cohort of patients with PMS and contributed to the molecular and clinical characterization of this syndrome. We also provided additional evidence of genotype-phenotype association with regard to the presence of renal problems and speech status in patients with PMS and estimated the frequency of this syndrome among Brazilian patients with ASD and intellectual disability (syndromic or not). With these results, we hope to contribute to better understand the ASD and PMS etiology, especially in our population / O Transtorno do Espectro Autista (TEA) corresponde ao um grupo heterogêneo de alterações no neurodesenvolvimento que afeta cerca de 1% da população mundial e apresenta um forte componente genético. O TEA é caracterizado pela presença de comportamento estereotipado e interesses restritos, além de problemas de interação social e comunicação. Além disso, em 10% dos casos, o TEA ocorre como uma condição secundária somada a uma síndrome. Um exemplo é a síndrome de Phelan-McDermid (PMS), associada a uma grande variabilidade clínica. Dentre os fatores genéticos, as variações no número de cópias (CNVs) são um dos mais importantes. No entanto, o significado clínico de muitas CNVs permanece incerto, além de haver juma sub-representação de CNVs pequenas associadas ao TEA na literatura. Dentro deste contexto, este projeto teve como objetivos 1) caracterizar CNVs grandes e pequenas em pacientes brasileiros com TEA utilizando uma lâmina de array-CGH previamente customizada no Laboratório de Genética do Desenvolvimento - USP. 2) descrever clínica e geneticamente uma casuística de pacientes brasileiros com PMS, bem como determinar a frequência desta síndrome em pacientes com TEA e com outras alterações de neurodesenvolvimento. Como resultados, nós 1) validamos a lâmina customizada, 2) fornecemos evidencia adicional de associação com o TEA para 27 genes, 3) descrevemos 15 CNVs nunca reportadas em associação com o transtorno 4) apresentamos evidências de que cerca de 70% das CNVs encontradas em nossa coorte não são polimorfismo de nossa população e 5) reforçamos a ideia de vias moleculares compartilhadas entre diferentes alterações do neurodesenvolvimento. Além disso, descrevemos pela primeira vez uma casuística brasileira de pacientes com PMS e contribuímos para a síndrome. Fornecemos evidência adicional de associação genótipo-fenótipo no que diz respeito à presença de problemas renais e status de fala em pacientes com PMS e estimamos a frequência da síndrome entre pacientes brasileiros com TEA e com deficiência intelectual (sindrômica ou não). Com estes resultados, esperamos ter contribuído para o entendimento da etiologia tanto do TEA, quanto da PMS, sobretudo na nossa população

Submitted by Fabricia Fialho Reginato (fabriciar) on 2015-07-31T00:53:02Z No. of bitstreams: 1 CristianeCabral.pdf: 4377433 bytes, checksum: b789cb978bdbdc0ed65df7402acbe999 (MD5) / Made available in DSpace on 2015-07-31T00:53:02Z (GMT). No. of bitstreams: 1 CristianeCabral.pdf: 4377433 bytes, checksum: b789cb978bdbdc0ed65df7402acbe999 (MD5) Previous issue date: 2014-08 / UNISINOS - Universidade do Vale do Rio dos Sinos / A presente dissertação teve como objetivo investigar a relação entre a família e a escola frente ao processo de inclusão escolar de crianças com Transtorno do Espectro Autista (TEA). Ela encontra-se composta por dois estudos organizados no formato de artigos. O primeiro deles apresenta uma revisão sistemática da literatura nacional e internacional sobre a inclusão escolar de crianças com TEA, atentando para o período e periódico da publicação, os temas investigados e as escolhas metodológicas. Foram analisados 25 estudos nacionais, publicados entre 1998 e 2014, localizados nas bases LILACS, BVS, SCIELO e Portal de Periódicos da CAPES, que consideram os temas: a escola frente ao processo de inclusão da criança com TEA, formação e atuação do professor na inclusão escolar, formação e atuação do psicólogo no âmbito da inclusão escolar e inclusão e desenvolvimento da criança com TEA no contexto escolar. Também foram considerados 92 estudos internacionais, localizados nas bases EBSCOhost e Medline, publicados entre 1993 e 2013, cujos temas de investigação foram agrupados em: a escola frente ao processo de inclusão escolar, capacitação e atuação do professor na inclusão escolar, instrumentos de avaliação do processo de ensino-aprendizagem no contexto da inclusão escolar, intervenções para inclusão social e desenvolvimento da aprendizagem, família e processo de inclusão escolar, inclusão e desenvolvimento da criança com TEA no contexto escolar. Quanto aos aspectos metodológicos, a maioria dos estudos localizados caracterizou-se como empírico e de abordagem qualitativa. O segundo estudo, por sua vez, teve como objetivo investigar a relação entre a família da criança com TEA e a escola de ensino regular, a relação entre a família da criança com TEA e a professora e a relação entre a professora e a criança com TEA. Trata-se de uma pesquisa qualitativa, de caráter exploratório e transversal, da qual participaram mães, pais e professoras de quatro crianças com diagnóstico de TEA. As mães responderam o Questionário sobre os Dados Sociodemográficos da Família e a Ficha de Dados sobre o Transtorno do Espectro Autista, além da Entrevista sobre a Inclusão Escolar de seu/sua filho/a com TEA, assim como os pais. As professoras responderam a uma Entrevista sobre seu Trabalho com Crianças com TEA. A análise de conteúdo revelou que a relação entre os pais, as professoras e a escola ocorre, muitas vezes, a partir de uma situação problema com a criança no contexto escolar. Além disso, percebeu-se que poucas escolas trocam informações e conhecimento com os pais de forma sistemática. Espera-se que ambos os estudos contribuam como fonte de informação teórica e empírica aos profissionais da educação e saúde que trabalham com inclusão de crianças com TEA, para que possam refletir e fortalecer suas práticas na busca de uma relação mais próxima entre família e escola, visando potencializar o desenvolvimento destas crianças. / The purpose of this dissertation is to investigate the relationship between the family and the school in relation to the process of school inclusion for children with Autism Spectrum Disorder (ASD). The first of the two articles that comprise this study presents a systematic review of the national and international literature on the inclusion of children with ASD, covering the period and the journal of the publishing, the themes investigated, and the methodological choices. The 25 national-based studies, taken from LILACS, BVS, SCIELO and CAPES Portal databases, published between 1998 and 2014 cover the following themes: the school and the process of inclusion of children with ASD, the formation of teachers and their attitude towards the school inclusion, the formation of psychologists and their attitude towards school inclusion, and the inclusion and development of children with ASD in the school context. Additionally, 92 international studies, located in the EBSCOhost and Medline databases, published between 1993 and 2013, were considered. The studies were grouped by investigation theme as follows: the school and the school inclusion process, development and behavior of teachers faced with school inclusion, evaluation instruments for the teaching-learning process in the context of school inclusion, interventions for social inclusion and development of learning, family and the process of school inclusion, inclusion and development of children with ASD in the school context. In terms of methodological aspects, most of the studies located are characterized as empirical and of a qualitative approach. The second study looks into the relationship between the family of a child with ASD and the regular school, the relationship between the family of a child with ASD and the female teacher, and the relationship between the female teacher and the child with ASD. It is a qualitative research, exploratory and transversal in nature, in which mothers, fathers and teachers of four children with ASD diagnose participated. Both mothers and fathers responded the Family Socio-demographic Data Questionnaire and the Autism Spectrum Disorder Data Sheet and an interview about the school inclusion of their child with ASD. The teachers were interviewed about their work with children with ASD. The content analysis showed that the relationship between the parents, the teachers and the school is often triggered by a problem situation involving the child in the school context. It was also observed that few schools exchange information and knowledge with parents on a systematic basis. It is hoped that both studies will contribute as a source of theoretical and empirical information to education and health professionals working with the inclusion of children with ASD so that they will reflect on, and improve their practices resulting in a closer relationship between the family and the school with better development of those children.