Autism has been constructed as a White male category. Currently, the prevalence ratio is 4 males to every 1 female diagnosed with autism. Historically, research studies supported these gender diagnostic gaps by claiming a genetic or hormonal causation. However, more recent research suggests that the gap in diagnosis is the cause of diagnostic bias, and instead, autism looks very different in women and girls compared to boys. Because autism is assumed to be a male category, autism intervention supports in schools do not reflect the needs of autistic girls. Missing from autism research are the narratives, perspectives, and expertise of autistic people and their care networks. The majority of autism research today comes from the psychological and epidemiology fields and examines causation and the biological factors of autism. Autism is constructed as a problem to be “solved” and the autistic person as someone to be “cured.” The majority of autism research is about autistic people rather than with autistic people. This research is framed by an intersectional Disability Studies (DS) theoretical stance that forefronts the experiences of disabled people and understands disability to be an essential aspect of a person’s identity, rather than a problem to be solved. Working narratively through multimodal data collection, this study privileges the sense making of three autistic women and honors their forms of expression and communication. The study also includes the perspectives of the participants’ mothers as essential aspects of their care networks. Through their stories, the expertise of autistic women is honored as essential to all conversations regarding schooling interventions for autistic youth. By exclusively focusing on women, I challenge the myth of autism as a male category and challenge a positivist autism research approach that ignores gender altogether.

This dissertation examines the relationship between a clinical classification (autism) and the sociocultural and institutional contexts of its application. Historically in Morocco, as in many other global contexts, the autism label has not been widely used, and the professional disciplines typically charged with diagnosing and treating it (i.e., child psychiatry and special education) are relatively new there. Children have long been described and treated as majnun (“possessed”), mo’aq (“disabled”), hmaq (“crazy”), f shkel (“weird”) – but not typically as tawahhudi (“autistic”). Beginning in the 1980s, and then intensifying after 2000, Moroccan parent-activists have been working together with foreign and local experts to change that. Drawing on an Anglo-American neurocognitive behavioral model of autism diagnosis and treatment – in direct opposition to a French psychoanalytic one – they have been training a new cadre of experts, raising autism awareness, lobbying government agencies, and constructing an infrastructure to identify and educate children as autistic. This dissertation follows the category autism as it circulates with increasing speed and intensity across Morocco by way of nongovernmental parent associations operating special classrooms for disabled children and adolescents. It tracks the ways the category – as well as its attendant practices and concepts – reshapes local moral worlds and everyday domestic life. Drawing on philosopher Ian Hacking’s work on “making up people” and “the looping effect of human kinds” (2007), it seeks to understand how and to what extent activists and experts are making autism into a viable category, and thus a viable way to be a person in Morocco. In other words, what makes the category “stick” – or not? How does it gain traction in local worlds? How does it become alive and meaningful to Moroccan families? And in turn, how does the label autism itself – its meanings, definitions, uses, enactments – change and respond to complex processes initiated by its introduction to quotidian contexts of Moroccan social life? Through 26 months of fieldwork in family homes, a child psychiatry clinic in a public hospital, a parent-run classroom for disabled adolescents, 17 autism associations across the country, as well as several sites of vernacular healing, this dissertation provides an important ethnographic complement to Hacking’s work and extends his theoretical insights by focusing on the everyday practice of autism therapies. The first half of the dissertation examines the consequences of autism activism for the category itself. It shows how the histories of local institutions for the disabled, lexicons of disorder, and colonial encounters all shaped the prototypical image of the autistic child in Morocco. Further, it shows how novels institutional forms and mundane therapeutics practices lend the category a certain sense and vitality for parents. Drawing on life histories, it also demonstrates how the diagnosis “stick” (or become a durable identity) – or not – for a variety of economic, pragmatic, and sometimes idiosyncratic reasons. The second half of the dissertation examines the consequences of autism activism for the people involved. It shows how new styles of parenting circulate along with the category and it identifies a particular style of prosaic activism through which parents work to reframe understandings of autism by becoming experts on their own children and building “prosthetic environments” for them (Holmes 1990). Further, it situates autism activism in relation to highly publicized neoliberal development projects, showing how a complex triangulation between the Moroccan monarchy, state, and civil society creates novel expectations, aspirations, and exclusions. Through a close analysis of one family’s experience of attempting to implement autism behavioral therapies in their home, it also demonstrates the tensions internal to autism activism and examines struggles over the ethics of autism therapies. By detailing the dynamic ways in which the category autism interacts with and responds to the social, political, and institutional contexts of its application, this dissertation offers a novel perspective on international health activism and the globalization of psychiatric categories.

Autistic individuals experience marginalization and stigmatization, and are often not connected to mainstream services or organizations fostering peer relationships (Boundy, 2008; Jaarsma & Welin, 2012; Robertson, 2010). Therefore, the accomplishments of the online Autistic community in building a community for self-advocacy, peer-support, friendships, and identity development (Brownlow & O'Dell, 2006; Kidney, 2012) are important to recognize, empirically examine, and promote (Blume, 1997a; Davidson, 2008). Utilizing a community-based participatory research approach (CBPR; Israel, Schulz, Parker, & Becker, 1998) the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE; www.aaspire.org) conducted the AASPIRE Internet Use, Community, and Well-Being Study, and collected data from 151 autistic adults and 173 non-autistic adults. The current study utilized data from the AASPIRE Internet Use, Community, and Well-Being Study on involvement in the online Autistic community, communication preferences, Autistic identity, and self-determination. The aims and rationale for the study were to contribute to the small body of quantitative literature on the online Autistic community, including expanding on findings that support positive outcomes of involvement in the online Autistic community (Kidney, 2012), and whether communication preference influences the relationships. The study also sought to examine the fit of an integrated model of associations among involvement in the online Autistic community, Autistic Identity, and self-determination in autistic adults who do and do not prefer online communication. Additionally, the study aimed to promote positive Autistic research and the voices of autistic participants and CBPR partners by challenging common misperceptions about autistic individuals and community/social interactions, understand the impact of communication preference, and inform policy and education designed for autistic individuals. The study used data to develop a multi-dimensional construct of involvement in the online community as well as explore the Autistic Identity Scale. The main findings included positive relationships between involvement in the online Autistic community and Autistic identity (r=.33, p<.01), as well as between involvement and self-determination (r=.38, p<.01) in autistic adults. Exploratory analyses yielded mixed results in the cross-sectional sample that was relatively limited in demographic diversity and small considering the number and type of analyses (n=324). Main findings include no moderating impact of preference to communicate online or population type (autistic or non-autistic) on the significant relationships between (1) involvement in the online community and self-determination or (2) involvement in the online community and Autistic identity. However, exploring the relationships among the variables with structural equation modeling, analyses indicated that no significant relationship exists between involvement in the online Autistic community and self-determination in autistic adults who do not prefer online communication. Findings indicate the need for further research on the complex impact of communication preference in larger samples of autistic adults. Despite sample limitations and mixed results from exploratory analyses, the findings mostly support the associations of involvement in the online Autistic community with Autistic identity and self-determination. The discussion addresses implications of the findings for theory, research, and action. For example, findings may influence how autistic individuals are provided education about and access to new media for fostering community, or lead to the development of online interventions or techniques for the promotion of positive outcomes in autistic individuals.

This research project offered an overview of Autistic spectrum disorder and discussed the need for research regarding the family's role in treatment. The treatment framework examined in this research project was Applied Behavioral Analysis. The study took place at the University Center for Developmental disabilities (UCDD), located at California State University San Bernardino.

Given the limited empirical evidence to guide support for romantic functioning in Autism Spectrum Disorder (ASD), this research aims to explore how closeness is managed in romantic relationships when one member is diagnosed with ASD. 8 participants, 3 couples and 2 individuals aged between 26 and 80 took part in the study. Of these 5 (3 male and 2 female) were autistic and 3 (1 male and 2 females were non-autistic). Participants were recruited using a specialist nationwide organization and they were interviewed individually or conjointly, as well as observed during a 15- minute interaction. Constructivist grounded theory was used to analyse the data and a framework was produced to describe processes of managing closeness in ASD. The core concept to emerge from the analysis was entitled “reaching towards the unknown”. It consisted of three categories, termed “encountering the other”, “reaching for understanding” and “managing uncertainty”. The framework captured processes of joining with and adapting to someone very different, of stretching beyond familiar bounds in order to understand the other and manage uncertainty. This research offers an inter-subjective perspective of ASD. It frames socio-emotional reciprocity and adaptability within romantic relationships as relational phenomena, which are contingent upon factors outlined within the framework. The model considers pre-existing theories about romantic closeness in order to assist counselling psychologists in accommodating ASD within their couple therapy practice.

Parenting is a stressful endeavor that can be even more difficult for parents of individuals with Autism Spectrum Disorders (ASD). Autism Spectrum Disorder (ASD) has become increasingly prevalent over the past 15 years, which has baffled researchers and frustrated parents. Respite can be important to help alleviate stress for parents of individuals with ASD, and serve as a break for them from the demands of parenting. The present study utilized a mixed methods design to study the effect of respite on caregiver well-being. Using quantitative data, the study examined the effects of a respite cruise vacation organized by a travel group called Autism on the Seas on various indices of well-being among 20 parents of children with ASD. Parents provided survey responses prior to the cruise (pre-cruise measure) and three months after the cruise (post-cruise measure). Variables included caregiver stress, caregiver self-efficiency, caregiver social network and family quality of life. It was hypothesized that the Autism on the Seas respite vacation experience would be related to increased well-being among caregivers, specifically decreased caregiver reports of stress, increased caregiver reports of social network, increased caregiver reports of family quality of life, and increased caregiver report of self-efficacy. The quantitative study found significant associations among the well-being variables, however no statistical difference between the caregivers’ reports of well-being on pre and post cruise measures. The qualitative component of the study aimed to describe perceptions of respite, barriers to respite-utilization, and aspects of respite that caregivers of children with ASD described as most beneficial. Six couples and one single father participated in the qualitative component of the study. Interview transcriptions were all analyzed through open coding and then axial coding to find data trends and themes. It was hypothesized that respite would bring positive experiences to caregivers, allowing caregivers to take time to maintain their own well-being psychologically and physically. The qualitative study revealed the themes of the centrality of trusted caregivers to parent’s willingness to accept respite, limited social networks of parent with children with ASD, and both caregiver well-being and child well-being and severity of ASD as important to parents’ use of respite programs such that parents of children with more severe ASD reported more trouble accessing respite care. Together, the study points to the need for future studies to investigate a broad range of types of respite programs for individuals with ASD and their families.

Finding an early and objective way to identify language impairment in autism spectrum disorder (ASD) has the potential to lead to earlier speech and language intervention for affected children. Previous magnetoencephalography studies utilizing the mismatch field component (MMF) component have shown that increased MMF latency is a predictor of language impairment in children with ASD. We attempted to replicate these results using the mismatch negativity (MMN), the electroencephalography (EEG) equivalent of MMF. EEG was recorded in children ages 5 to 10 with ASD plus language impairment (ASD +LI), ASD minus language impairment (ASD –LI), and typically developing controls (TD) during a passive auditory oddball experiment presenting speech and nonspeech sounds. Contrary to previous MMF findings, individuals with ASD +LI demonstrated decreased MMN latency in the left hemisphere in response to novel vowel sounds compared to individuals with ASD –LI and TD controls. A positive correlation between left hemisphere MMN latency and language scores on the Clinical Evaluation of Language Fundamentals was found when combining both ASD groups. Our results lend support to the theory that some children with ASD +LI have increased connectivity in primary sensory cortices at the expense of computational connectivity between association areas of the brain. This may account for faster speech sound processing despite low language scores in these children. Further research needs to be done in order to determine if grouping children by hyper– versus hyposensitivity to auditory stimuli could explain conflicting results between studies and elucidate a neurophysiological biomarker of language impairment in subgroups of children with ASD.

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2018-03-21T12:11:53Z No. of bitstreams: 1 Roseli Cristina Campos do Carmo.pdf: 745259 bytes, checksum: 890afe24a1ed24e904198529872b46b5 (MD5) / Made available in DSpace on 2018-03-21T12:11:53Z (GMT). No. of bitstreams: 1 Roseli Cristina Campos do Carmo.pdf: 745259 bytes, checksum: 890afe24a1ed24e904198529872b46b5 (MD5) Previous issue date: 2018-02-22 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Introduction Patients with ASD show a lot of changes in their communicative performance that may end up banning and / or tarnishing the development of social and linguistic features of the subject. For this reason communication has become the key focus on speech therapy interventions in these cases. Recent researches, contrary to what traditionally is postulated, have pointed out that the working with communication in teen and adult patients also have effective results. This project aimed to discuss, through a clinical case study, the effects of speech therapy in the communication of a patient with ASD, through the use of a therapeutic device, Kitchen Workshop. The choice of this device was determined not only by the adoption, in this discussion, of certain theoretical perspectives on language and subjectivity, and hence the communication itself, but also by the recognition of its effectiveness in speech therapy, as shown in some studies. Objective: describe and analyze the effects of using KW therapeutic device as a communication treatment for a teenager with ASD. Method It is a clinical case study of a 19-year-old male adolescent presenting diagnosis of autism spectrum disorder. The patient participated in ten Kitchen Workshop therapeutic group sessions. Conclusion: This study may clarify that working with adolescents is effective, unlike that postulated by the maturational views. If the clinical structure can ensure the patient to establish a broad discursive and subjective movement, just as the therapeutic device KW allows, which will consequently create opportunities for proper circulation in communicative scenes / Introdução: Os pacientes com TEA apresentam muitas alterações em seu desempenho comunicativo, que acabam interditando e/ou maculando o desenvolvimento das funções sociais e linguísticas do sujeito. Por essa razão a comunicação passou a ser o foco fundamental nas intervenções fonoaudiológicas nestes casos. Pesquisas recentes, na contramão do que tradicionalmente se postula, têm apontado que os trabalhos com a comunicação de pacientes adolescente e adultos também apresentam resultados eficazes. O presente projeto visou discutir, através de um estudo de caso clinico, os efeitos de uma intervenção fonoaudiológica na comunicação de um paciente com TEA, através do uso de um dispositivo terapêutico, a Oficina de Cozinha. A escolha deste dispositivo determinou-se não somente pela adoção, nesta discussão, de certas perspectivas teóricas sobre linguagem e subjetividade e, consequentemente, da própria comunicação, mas, também, pelo reconhecimento de sua eficácia no trabalho fonoaudiológico, já apresentada em alguns estudos. Objetivo: Descrever e analisar os efeitos do uso do dispositivo terapêutico OC no trabalho com a comunicação de um adolescente com TEA. Método: trata-se de um estudo clinico de caso de um adolescente de 19 anos de idade do gênero masculino que apresenta diagnostico incluído no transtorno do espectro autismo. O paciente participou de dez sessões de um processo terapêutico grupal em Oficina de Cozinha. Conclusão: Este estudo pode esclarecer que o trabalho com adolescentes é eficaz, diferentemente do que postulam as visões maturacionais, se a estrutura clínica for tal que assegure ao paciente o estabelecimento de uma ampla circulação discursiva e subjetiva, exatamente como o dispositivo terapêutico OC possibilita, o que vai gerar consequentemente, oportunidade de uma adequada circulação nas cenas comunicativas

Buildings affect people both physically and psychologically, this study analyses this impact which the built environment has on people's lives. This interrelationship between people and the built environment is based on human perception. The study explores this relationship further in order to develop an understanding of the ways in which architecture influences peoples' moods, behaviours and experiences. By determining the importance of this interrelationship and developing a better understanding of it, a deeper analysis of the specialized needs of individuals with altered or impaired perceptions is developed. Focus is placed on individuals with autism spectrum disorders, who are known for their difficulties with perception. In addition, despite its overwhelming prevalence, they have a history of being inadequately catered for within the built environment because their wide range of complex needs are poorly understood. The purpose of this study is to establish an understanding of the unique needs of this particular user group, to interpret the implications of these needs with regards to the built environment, to assess existing facilities in regards to these findings and to provide information which can be used to develop guidelines for creating positive environments which can enhance the daily lives of individuals with autism spectrum disorders. The research was carried out by way of a review of existing relevant literature on the subject of perception, experience and autism spectrum disorders, a review of relevant precedent studies, a critical analysis of relevant case studies and interviews with parents, teachers and principals who have had first-hand experience with individuals with autism spectrum disorders. The built environment, which plays a large role in people's lives, must be carefully considered and designed to ensure that the needs of its users are met and their overall wellbeing is maintained. In contemporary society, where human needs are often ignored, built environments have become ego-driven objects of visual seduction (Pallasmaa, 2005). This study calls for re-humanising architecture, considering human aspects in design and catering for all human needs. By focusing on responding to users particular needs, throughout the design process, buildings which make significant, positive contributions to the lives of individuals can be made. / Thesis (M.Arch.)-University of KwaZulu-Natal, Durban, 2012.

People with disabilities, including those on the autism spectrum, comprise the world's largest minority and experience significant inequities in Internet use. Existing standards for accessible web sites are necessary but not sufficient without the direct engagement of end users in identifying access needs. Yet little is known about methods for effective engagement, and there are no systematically derived Web accessibility guidelines for autistic end users. Here I explore a hybrid approach to direct engagement using critical systems thinking (CST) and community based participatory research (CBPR) during the co-development of a healthcare-focused web site by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). I explore these ideas on three levels: theory, practice, and critical self-reflection. On the theory level, I examine the common philosophical and historical roots of CST and CBPR, ways in which they intersect and complement, and propose the hybrid approach exemplified by AASPIRE. On the practice level, I explore our web site development process and evaluate the accessibility, usability, and acceptability of the web site for autistic end users; from that work, comes a set of recommendations for working with people with disabilities in technology development and a set of accessibility guidelines for autistic end users. On the critical self-reflection level, I inquire into my own experiences as an insider-researcher during the web site development. I then synthesize the levels to evaluate whether or not taking a hybrid CST/CBPR approach to web development was effective, as indicated by the team's ability to function as an emancipatory learning organization (an indicator of effective systems thinking on an organizational level), and the overall usability and accessibility of the web site. The result of the synthesis suggests a hybrid CST/CBPR approach was effective. Implications of this work include innovations in CST methods for operationalizing its commitment to human emancipation, potential for drawing a more ideologically-aligned systems thinking literature into the domain of CBPR, a means for individuals wishing to create a more power-balanced learning organization, innovations around including people with disabilities in research and technology development, more accessible web sites for people on the autism spectrum, and a potential small shift of dominant discourse around autism, disability, and the value of insider-researchers over time.