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.

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.