MSc (Occupational Therapy), Faculty of Health Sciences, University of the Witwatersrand / As there are no occupation based outcome measures evaluating the effect of occupational therapy in the pre-school child with an Autism Spectrum Disorder (ASD) an Occupational Performance Questionnaire (OPQ) was developed to address this. The OPQ was tested for content validity and reliability before a 12 month intervention study to establish construct validity and response to change in children with ASD receiving Occupational Therapy using a Sensory Integration frame of reference (OT-SI) was done. The results of 19 subjects on the OPQ were compared with the results on two other standardised measures -the Short Sensory Profile (SSP), and Parenting Stress Index (PSI-SF) at six monthly intervals. Convergent validity between family impact on the OPQ and the PSI-SF was moderate but for occupation performance on the OPQ and the SSP it changed from negligible to moderate over 12 months. The OPQ is responsive to change as correlations between improvements in the three outcome measures were moderate. The OPQ was found to still need attention in terms of item reliability and validity.

Thesis advisor: Mary E. Walsh / Comprehensive and collaborative intervention practices with individuals diagnosed with an autism spectrum disorder (ASD) recognize the essential role of the family in effective, long-term treatment of ASDs (e.g., National Research Council, 2001). While some research has focused on the experiences of families of individuals diagnosed with an ASD, there exists a need to better understand what factors detract from or facilitate the family's ability to adapt to their circumstances. Guided by the FAAR model (e.g., Patterson, 1989, 2005) and the Family Systems-Illness Model (e.g., Rolland, 1994, 2003), this current study examined the relationship between two demands or risk factors (i.e., the perceived severity of a child's ASD and the uncertainty related to a child's ASD), three capabilities or protective factors (i.e., optimism, mastery beliefs, and control beliefs), and the family's adaptation to their family member's ASD (i.e., family quality of life). Parents (N=207) of children diagnosed with Autism, PDD-NOS, or Asperger's Syndrome completed a self-report questionnaire assessing perceived ASD severity, the uncertainty regarding their child's ASD, the participant's optimism, mastery, and control beliefs, and the family's quality of life. Results demonstrated that the perceived severity of the child's ASD, the uncertainty related to the child's ASD, dispositional optimism, sense of coherence, and professional-related health locus of control are factors that significantly influence the family's overall quality of life. In addition, dispositional optimism and sense of coherence were found to mediate the relationship between the identified demand factors and the family's quality of life. Results suggest that perceived severity and uncertainty regarding a family member's ASD are demands that have important implications for the family. Additionally, results suggest that optimism and mastery beliefs can play a positive, complex role in the family's adaptation to a family member's ASD. Finally, the results of this study suggest that control beliefs may act in complex and different ways than expected. Theoretical considerations and implications for practice and future research are discussed. / Thesis (PhD) — Boston College, 2009. / Submitted to: Boston College. Lynch School of Education. / Discipline: Counseling, Developmental, and Educational Psychology.

Adolescents with Autism and their families experience a significant increase in the number and nature of challenges faced when leaving the structure of the formal education system. Increased support and planning is required in order to prepare for and better manage this period, as a successful transition is associated with family well-being. An ecosystemic approach was used in order to better understand the experiences of the individual, the family, the school and the community during this period. The purpose of this study was to gain an understanding of parent and professional perspectives on various elements of the transition process, including planning and support, predicted outcomes and the feelings experienced, in order to develop awareness, improved planning and consequently; outcomes. A sample of 14 participants (7 parents and 7 professionals) was engaged in semi-structured interviews. The results indicate that both parents and professionals feel an overwhelming sense of fear and uncertainty with regards to the future of the adolescent with Autism; however a sense of optimism and hope also exists, as participants reported effective interventions were beginning to occur. The knowledge and understanding of the needs of these individuals is continuously growing within the parents and professionals who are directly involved in the lives of adolescents with Autism; however increased awareness is required within the community and government sectors in order to gain increased access to resources and services. With the appropriate support, individuals with Autism can experience increased quality of life within residential, employment, social and community settings. The results of the current study are discussed with reference to previous research studies, and recommendations for further research are provided.

The main purpose of this thesis is to define the essential in how four persons with Asperger syndrome remember their childhood. As part of this purpose, the essay also refers to evince how these persons mobilise a collective memory and a historic consciousness. The purpose realises through a phenomenological approach and a qualitative content analysis of four autobiographies, written by persons diagnosed with Asperger syndrome. Four comprehensive terms are compiled to summarize the essentials of the authors’ childhood memories. The first term is Alternative perception and shows the authors had an unusual strong perception. The second term, Own time, shows the authors had an essential need to be alone. The third term Alienation, evince that the authors experienced different kinds of alienations during their childhood. Term four is called Incomprehension and shows how the authors´ childhood have been incused of a great incomprehension, for instance in relation to themselves and in social interactions. Considering the author’s memories as use of history, it is also made clear these memories create a general pattern of experiences that turns into a collective memory. This collective memory creates a foundation for persons diagnosed likewise, offering meaningful contexts to recognize and formulate their identities. The essay’s overall analysis also establishes how difficult the boundary can be to discern, of when something generalized merges into something specific, and how invisible and intangible Asperger syndrome seems to be for the environment.

O manejo clínico das instâncias constitutivas da subjetividade por meio da música tem encontrado na identidade sonora um de seus eixos centrais. Ao mesmo tempo, diversas aplicações terapêuticas têm fundamentado sua justificativa na teoria da musicalidade comunicativa, que considera a capacidade de produzir e reconhecer as formas e qualidades expressivas no tempo que caracterizam e imprimem sentido aos sons como o fundamento das interações sociais, mesmo nas etapas iniciais do desenvolvimento. Apoiando-se na ideia de que crianças com autismo conservam tal capacidade, não obstante os problemas comportamentais, sociais e de linguagem, dispositivos que empregam a música com finalidades terapêuticas vêm apresentando resultados benéficos a essa população. Esta pesquisa pretendeu avaliar se a musicalidade da criança com autismo pode ser abordada com fins terapêuticos pelo uso de canções que se relacionem com sua identidade sonora e instaurem um campo possível para o surgimento de movimentos expressivos e de interação social. Para tanto, realizou-se uma oficina terapêutica com a participação de cinco crianças entre quatro e nove anos, durante um ano, com frequência semanal e duração de uma hora, em um total de 20 sessões. Os procedimentos empregados foram a improvisação musical, o jogo musical e recriação de canções. As sessões foram registradas com câmera de vídeo e segmentos foram selecionados e microanalisados, sendo posteriormente descritos em linguagem verbal, partituras musicais e gráficos de análise acústica, incorporados a estudos de caso individuais que utilizaram as categorias da Avaliação Psicanalítica aos 3 anos como indicadores clínicos. Simultaneamente, realizou-se um levantamento bibliográfico sobre livros, artigos de periódicos, teses e dissertações acadêmicas que incluíssem os temas pesquisados, resultando em uma revisão narrativa de estudos em um amplo escopo de disciplinas. A pesquisa indica que a música e as canções produzem efeitos terapêuticos em crianças com autismo, que os mesmos podem ser compreendidos em suas dimensões intrapsíquica, intersubjetiva e sociocultural. A oficina de música contribui também para o desenvolvimento da função psíquica da voz e a flexibilização do desenvolvimento de células musicais em motivos e figuras mais complexos. Também gera possibilidades de imitação, sincronização e coordenação de movimentos, facilitando a interação social entre seus participantes. Uma das dinâmicas que produziram engajamentos sociais mais intensos foi a construção em grupo de narrativas a partir de ideias musicais e temáticas trazidas pelas crianças. Além disso, a música teve um efeito mais eficiente que ordens, pedidos e reprimendas verbais na contenção dos movimentos agitados e agressivos de algumas crianças. Assim, a hipótese foi parcialmente comprovada, tendo em vista os diversos movimentos expressivos e de interação social evidenciados. Por outro lado, a noção teórica de que esses processos se orientam em torno do conceito de identidade não foi sustentada pela presente pesquisa, já que os movimentos de constituição subjetiva mais importantes verificados na parte empírica poderiam ser traduzidos como processos de identificação, e não de expressão de identidades. / The clinical management of the constitutive instances of subjectivity through music has found in sound identity its central axis. At the same time, a number of therapeutic applications have based their justification upon the theory of communicative musicality, which considers the ability to produce and recognize the shapes and expressive qualities in time that characterize and provide sense to sounds as the foundation of social interactions, even in the early stages of development. Relying on the idea that children with autism retain this ability, despite the behavioral, social, and language problems, devices that use music for therapeutic purposes have shown beneficial outcomes for this population. This research aimed to evaluate whether the musicality of children with autism can be approached with therapeutic purposes by using songs that relate to their sound identity and introduce a possible field for the emergence of expressive movements and social interactions. To this end, a therapeutic atelier was organized with the participation of five children aged between four and nine years, during one year, with a weekly frequency and duration of an hour, for a total of 20 sessions. The procedures employed were musical improvisation, musical play and recreation of songs. The sessions were recorded with a video camera and segments were selected and microanalyzed, being later described in verbal language, musical scores and acoustic analysis graphics, embedded in individual case studies using the categories of the Psychoanalytic Evaluation After 3 years as clinical indicators. Simultaneously, a bibliographic survey of books, journal articles, theses and academic dissertations that include the investigated subjects was performed, resulting in a narrative review of studies on a broad range of disciplines. The research indicates that music and songs produce therapeutic effects in children with autism, which can be understood in their intra-psychic, inter-subjective and socio-cultural dimensions. The music atelier also contributes to the development of the psychic function of the voice and the flexibility of the development of musical cells into motifs and more complex figures. It also generates possibilities for imitation, synchronization and coordination of movements, facilitating social interaction among its participants. One of the dynamics that produced more intense social engagements was the group construction of narratives from musical and thematic ideas brought by the children. In addition, music had a more efficient effect than orders, requests and verbal reprimands in containing the agitated and aggressive movements of some children. Thus, the hypothesis was partially proven, in view of the many expressive movements and social interactions. On the other hand, the theoretical notion that these processes are oriented by the concept of identity was not supported by this research, since the most important movements of subjective constitution evidenced in the empirical part might be translated as identification processes, not of identity expression

Thesis advisor: Ellen Winner / Individuals with Autism Spectrum Disorder (ASD) have been shown to have a local processing bias: they are able to focus on the details of a visual display and ignore the overall whole and context (Mottron & Belleville, 1993; Mottron, Belleville, & Ménard, 1999). Typical individuals with the ability to draw realistically also show this local bias (Drake, Redash, Coleman, Haimson, & Winner, 2010; Drake & Winner, 2011). Two opposing theories have been proposed to account for the local processing bias in individuals with ASD. Some have argued that the local processing bias is at the expense of the ability to grasp the whole and that these individuals lack a "global bias" (Happé & Frith, 2006). According to this view, individuals with ASD have "weak central coherence." Mottron and his colleagues, however, have suggested that the local processing bias seen in ASD exists alongside intact global processing (Mottron & Belleville, 1993; Mottron et al., 1999). According to this view, individuals with ASD have "enhanced perceptual functioning." However, it is likely that these classifications overlook individual variations in local and global processing in the ASD and non-ASD population, some ASD and non-ASD individuals strong in both, weak in both, strong only in local, or strong only in global. If so it would be important to determine the predictors of each pattern, whether the same patterns of individual differences exist in the ASD and non-ASD population, and whether the predictors of each pattern are the same for ASD and non-ASD individuals. Four predictors of local and global processing (as assessed by a battery of tasks) were investigated: verbal IQ, nonverbal IQ, realistic drawing skill, and severity of ASD diagnosis. Participants in study 1 were non-ASD children; Participants in study 2 were ASD children; and those in study 3 were the combined sample of ASD and non-ASD children. Four major findings emerged. First, the predictors of local and global processing skill in the ASD population are the same as those in the non-ASD population. Second, the strongest predictor of local and global processing skills was realistic drawing skill, and not diagnosis, a novel finding. Third, as a group, ASD individuals performed no better and no worse on either local or global processing tasks than did non-ASD individuals, again a surprising and novel finding. Finally, and consistent with finding #2, children with strong performance in local and global processing also scored high in both drawing realism and nonverbal IQ. / Thesis (PhD) — Boston College, 2012. / Submitted to: Boston College. Graduate School of Arts and Sciences. / Discipline: Psychology.

Thesis advisor: David Scanlon / Family member-educator collaboration is envisioned as the "cornerstone" of the educational decision-making process for students with disabilities (e.g., Harry, 2008; Olivos, Friend and Cook, 2007, Gallagher and Aguilar, 2010). In the case of immigrant and refugee families, however, the ideal of coequal collaboration is often elusive for a variety of reasons (e.g., language barriers, disparate ideas about what familial involvement should be in educational decisions) (e.g., Lo, 2012). This qualitative multiple case study design (Yin, 2009) relied on interviews with family members and educators as well as observations of IEP meetings to examine the educational decision-making process in the context of Somali-American families of boys with autism. Findings from the present study echo many conclusions of previous research in terms of factors that facilitate (e.g., thoughtfully designed IEP meetings, frequent family-educator communication) and impede (e.g., divergent beliefs about the cause and course of autism, language barriers) family-educator collaboration in special education decision-making. The results, meanwhile, extended and challenged other aspects of existing literature. Analysis revealed, for example, the each school has a unique institutional culture whose norms (e.g., norms of parent participation in school activities, from dances and races to PTA meetings and in-class volunteering) can profoundly influence the ways in which family members and educators interact and engage in educational decision-making. In addition, while existing literature emphasizes the importance of cultural sensitivity among special educators (e.g., Harry, 1992; Lo, 2013), the present study suggests that in some cases, over-emphasis on cultural sensitivity can cause educators to be overly deferential and reluctant to actively engage with family members, in turn, leading to diminished or inauthentic communication. / Thesis (PhD) — Boston College, 2014. / Submitted to: Boston College. Lynch School of Education. / Discipline: Teacher Education, Special Education, Curriculum and Instruction.

Relative infrequency of communication initiation, particularly initiations that involve attention-sharing or other social purposes, appears to negatively impact the later-life outcomes of children with autism. Strategies to improve or encourage initiation skills in autism are hampered by the need for the behaviour to be spontaneous (i.e. unprompted by a partner). One potential approach that addresses the spontaneity issue is to extrinsically motivate initiations by changing aspects of the child’s environment such that they merit, or even demand, initiating a communication. Detecting subjectively inconsistent (i.e. discrepant) aspects in game-like virtual contexts appears to be something that inherently interests young children with autism, and can motivate them to initiate spontaneous, positive communications. Initial evidence for discrepancy as a communicative motivator came from a study which re-analysed video data from an existing autism and technology project (ECHOES), illustrating that a heterogeneous group of children all reacted frequently and socially to naturally occurring (i.e. unintentional, non-designed) discrepant aspects within ECHOES. A set of high-level design principles was developed in order to capture “lessons learned” from ECHOES that might facilitate re-creation of a similar pattern of spontaneous, positive initiation around discrepancy. A second, proof-of-concept study implemented these design principles in a set of three new touch-screen games (Andy’s Garden) that sought to establish, and then deliberately violate, child expectations (i.e. provide discrepancy-detection opportunities: DDOs). Children reacted socially and positively to the new games and DDOs. The results of this study allow us to answer its overall questions affirmatively: it is possible to motivate children’s communication–specifically, their initiation–by including deliberately-designed DDOs in a set of games. These findings are the first step towards determining whether discrepancy-detection opportunities may form a component of a future technology-based communication skills intervention, capable of changing children’s initiation behaviour outside of a game context.

Empathy is vital for relationships in the social world. Although definitions vary, theory and research has delineated empathy into cognitive and affective components. Recent ideas propose there are further aspects that are important to empathy, such as the ability versus the drive to empathise within both the cognitive and affective components. Various self-report indexes have been developed to measure empathy, yet current measures do not reflect all theories about empathy. The aim of this thesis was to develop and validate a new empathy questionnaire that included further components more consistent with recent ideas and theories about empathy. This thesis further aimed to use this questionnaire to investigate the components of empathy in autism, which is characterised in part by empathy deficits. The first study investigated the structure of empathy in the commonly-used Empathy Quotient (EQ) short-form to examine which empathy components it indexes. Results showed cognitive, affective and social skill components were extracted from the EQ-short, but also revealed ability and drive aspects captured within affective empathy but not within cognitive empathy components. This suggested items of the EQ-short incorporates some, but not all, components proposed to be important to empathy. Consequently, a new self-report empathy questionnaire called the Empathy Components Questionnaire (ECQ) was developed in order to fully capture all components of empathy. A five-factor solution was developed and confirmed for the ECQ across multiple independent samples in studies two through five, revealing five components of cognitive ability, cognitive drive, affective ability, affective drive, and affective reactivity. A final study revealed individuals with autism had lower self-reported cognitive empathy, affective drive and affective reactivity compared to controls, but comparable scores between groups for affective ability. This thesis produced a new measure of empathy more in-line with recent theories, which provided understanding about empathy and how it differs in autism.

Child-computer interaction researchers are increasingly recognising the benefits of directly involving children in the design of new technology. This has resulted in the development of several design methods for involving children in the technology design process, using approaches such as Participatory Design (PD). More recently there has been a greater focus on involving children with diverse needs, as technology can often be particularly beneficial within the education of these children. One such group is children with Autism Spectrum Disorders (ASD) and in recent years there has been a sharp rise in the amount of technology being developed specifically for this population. However, the needs and preferences of this user group can differ from the general child population due to the specific characteristics of ASD, with these differences making it more challenging for adult designers to develop appropriate technologies. This thesis therefore seeks to establish the potential of using PD to involve children with ASD within the technology design process through the development of a new PD method, which aims to support the typical difficulties of children with ASD at the same time as utilising their characteristic strengths. A qualitative approach has been followed in order to understand firstly the ability of children with ASD to undertake typical design tasks; secondly the degree children with ASD are able to participate in the design process; and thirdly the ability of children with ASD to collaborate within a design team. The results reveal that children with ASD can undertake typical design tasks, but some children may require additional support to generate and communicate their design ideas. It is shown that a flexible approach should be taken with regard to the involvement of children with ASD within the technology design process, and the importance of the adaptability of the adult’s role in supporting the children’s participation and collaboration is additionally highlighted. This research has led to the development of a new PD method, IDEAS, which is tailored to the specific needs of children with ASD through the incorporation of flexible structured and supportive features.