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Young adults with autism transitioning from school to adulthood are commonly described as exhibiting poor outcomes. Although there has been research efforts measuring quality of life and life satisfaction in individuals with autism, these conceptualizations of well-being are still predominantly deficit-focused and based on normalizing ideals of the dominant culture. Only by incorporating individuals with autism’s perspectives and involving their meaningful participation in research can we better understand and promote well-being among individuals with autism. The present study aims to explore young adults with autism’s ideas about well-being. I conducted a Photovoice project using a participatory action research approach with 14 young adults with autism in a post-school transition program and their three instructors. Results revealed a broad sense of young adults with autism expressing their differences while having a strong desire to be connected with others. Specifically, three themes depicted young adults’ ideas of well-being in terms of (1) showing their self-expression, understanding, and strengths as well as exhibiting personal growth and learning, (2) having close relationships with their family, friends, and animals, and (3) developing different ways of engagement and connections with the community and environment. The research process itself also supported their experiencing of self-expression and forming connections with other people, which were integral to their well-being. The young adults intended to use the project results to present their personhood in a positive manner and to promote better understanding of autism in society. I drew from critical disability studies to discuss the findings in relation to the academic literature and inform advocacy work at a broader sociocultural level. This study has implications for researchers to conduct research that is ethically appropriate and sensitive to the needs of the autism community. Practitioners working with transition-age youth with autism can also draw upon from this study to reflect on their relationships and engagement with these youth to better support their well-being.

This essay investigates how the first person narrative of Mark Haddon’s neurodiverse protagonist in The Curious Incident of the Dog in the Night-Time raises awareness for the complexity of neurodiversity in relation to a neurotypical society. This has been done by applying the critical lens of Disability Studies and Disability Studies in Education to explain how disability is a concept of social and cultural construct. As the Swedish school has failed to provide neurodiverse students with the inclusive environment they need, the importance of fostering students who are accepting towards cognitive disabilities is greater than ever. This essay therefore argues that an inclusion of Haddon’s novel in the EFL classroom could be used to provide the students with understanding for neurodiversity as well as strategies that could help them to navigate in a socially demanding society.

Le fait d’avoir une sœur ou un frère autiste peut exercer une influence majeure sur le parcours et les expériences de vie des personnes non autistes de même que créer certains défis, y compris à l’âge adulte. Malgré une visibilité de plus en plus importante des personnes autistes et de leur famille, le vécu de leurs frères et sœurs non autistes à l’âge adulte est actuellement très peu documenté. Le présent mémoire rend compte de divers défis et expériences qui teintent le parcours de frères et sœurs adultes non autistes de personnes autistes. L’objectif est de mieux comprendre ces personnes pour leur offrir un soutien plus adapté à leurs besoins. Des entretiens individuels semi-dirigés ont été réalisés auprès de 10 personnes âgées de 25 à 34 ans ayant un frère ou une sœur autiste et vivant au Québec. Les résultats mettent en lumière les impacts systémiques des réponses à l’autisme et à ses manifestations au sein de la famille des personnes interviewées. Les besoins de la fratrie en lien avec son propre bien-être ainsi qu’avec l’accès aux services et à l’information y sont aussi explorés. Notre recherche démontre que dans l’ensemble, les réponses aux besoins de la personne autiste et des membres de sa famille ont un impact sur l’expérience de la fratrie non autiste et influence le développement de sa résilience. Les professionnelles et professionnels du travail social peuvent jouer un rôle-clé à cet effet. Ce mémoire entend contribuer à une meilleure compréhension des expériences et des besoins de la fratrie non autiste. Il a aussi pour objectif de permettre aux travailleuses sociales et travailleurs sociaux de mieux accompagner ces personnes et leurs familles. / Having a sibling with autism can have a major influence on the life course and experiences of people without autism, as well as creating challenges, including in adulthood. Despite the increasing visibility of people with autism and their families, the experiences of their non-autistic brothers and sisters in adulthood are currently poorly documented. This thesis reports on the various challenges and experiences that characterize the journey of non-autistic adult siblings of people with autism. The objective is to better understand these people to offer them support more suited to their needs. Semi-structured individual interviews were carried out with 10 people aged 25 to 34 with an autistic sibling and living in Quebec. The results highlight the systemic impacts of responses to autism and its manifestations within the families of those interviewed. The needs of siblings in relation to their own well-being as well as access to services and information are also explored. Our research shows that overall, the responses to the needs of the autistic person and their family members have an impact on the experience of non-autistic siblings and influences the development of their resilience. Social work professionals can play a key role in this regard. This thesis intends to contribute to a better understanding of the experiences and needs of non-autistic siblings. It also aims to enable social workers to better support these people and their families.

Mobility within the community is a necessary part of urban life for enhancing personal well-being and happiness. However, autistic individuals may not be the natural players in this context and have risks of using public transport, including getting disoriented, meltdown or shutdown, and being discriminated against in motion. This can be attributed to their difficulties in social communication and cognitive abilities brought about by autism. However, autistic individuals’ lived experience is rarely explored in the field. Thus, this study aims to examine their personal experiences and pay attention to how autism is enacted in public transport settings, and various encounters in a material environment. A two-month ethnographic study was used from the perspective of a micro-lens of a specific autistic adult individual. Through a narrative analysis of “key events” happening in the process of movements, the materiality of mobility by taking public transport for autistic individuals’ ordinary life was presented.  The findings and analysis are unfolding from three oriented dimensions. Firstly, I point out that as a material practical form of moving, encounters of the autistic participant with other passengers in a public moving space are merely a temporary gathering, shaping a relationship that avoids communication. Additionally, risks exist including information overload and being disoriented that show how autism is enacted in public transportation settings. Secondly, I suggest that as the material basis of the movements of taking public transport, the outside landscape presents the materialistic appearance of the modern city, bringing a sense of security as well as a channel for the autistic participant to learn new things, but at the same time the de-naturalization and modernity exacerbates the autistic one’s negative relation to the urban environment. Last, I demonstrate how the coercive nature of the technological objects intervenes in the originally pure tension between autistic individual and moving services, thus indirectly exposing the loss of discursive power and resources experienced by the participant.  Based on these findings, I draw on the discussions of the strategies and the built environment. From the standpoint of the former, it shows that prioritizing fast mobility has led to the neglect of actual needs for a higher standard of moving experience. This also indicates that the autistic one's resistance to movement often manifests as an attachment to the fixed and secure space of the home, forming the strategies of responsiveness and resistance. The latter suggests the ‘perspective turn’ to the social model of disability, realizing that being disabled might be a universal experience of a person, and everyone could be in a state of disability either permanently or temporarily. Therefore, optimizing the built environment of public transport not only benefits autistic individuals but also represents an investment in broader social well-being.

La synesthésie est une condition neurocognitive bénigne où les sujets porteurs de cette différence expérimentent des associations sensorielles de manière automatique, involontaire et idiosyncratique. Chez eux, les informations issues d’une modalité sensorielle telle que la vue, entraînent simultanément l’expression des modalités d’autres sens, tel que l’odorat. Cette particularité serait présente chez environ 4 % de la population mondiale (Hubbard, 2007). Il existe des dizaines de formes répertoriées (Day, 2011) et la teneur de leur expression varie d’un individu à l’autre (Simner, 2013). La synesthésie tactile-olfactive est présente chez 0,3 % des synesthètes (Day, 2011). Elle entraîne des perceptions olfactives selon les textures et autres sensations tactiles. La synesthésie a plusieurs impacts sur le quotidien des synesthètes, car elle affecte notamment leur façon de percevoir et de ressentir leur environnement. Puisqu’il s’agit d’une forme de développement neurocognitif alternatif (Ward, 2019), il peut être considéré comme un type de neurodiversité à part entière. Les expériences synesthésiques sont difficilement exprimables par le langage, ce qui peut provoquer un sentiment d’exclusion (Nielsen et al., 2013). Une des façons de favoriser l’inclusion est l’empathie (Masten, Morelli et Eisenberg, 2011), qui peut être suscitée grâce à des œuvres et des expositions artistiques qui impliquent l’engagement physique des spectateurs (Raboisson, 2014). Nous avons donc tenté de créer une expérience artistique permettant aux participants d’expérimenter avec leur corps les effets de la synesthésie tactile-olfactive. Cependant, il n’existait pas de média capable de réaliser la médiation de ce phénomène sensoriel. Nous nous sommes donc attelées à la conception et à la réalisation d’un tel artefact. En appliquant la méthodologie de la recherche-création, et en particulier les principes du mouvement DIY du « faire », nous avons créé un prototype de machine simulant les effets de la synesthésie tactile-olfactive. Toutefois, cette entreprise de création d’un dispositif de médiation technologique s’est révélée ardue et notre création finale ne ressemble pas exactement au prototype que nous espérions produire. Nous sommes allées aussi loin que nos compétences techniques nous le permettaient pour livrer un objet qui nécessiterait des améliorations futures. Le présent mémoire présente le cadre conceptuel et théorique ainsi que le processus de création dudit artefact. Grâce aux enseignements tirés de l’analyse de notre pratique, nous concluons qu’il existe plusieurs enjeux sociaux et techniques dans la pratique du « faire » en tant que méthode de création d’artefacts technologiques. Nous discutons finalement le rôle qu’un tel projet de recherche-création peut jouer dans la sensibilisation du public vis-à-vis des phénomènes neurocognitifs que sont la synesthésie et la neurodiversité. / Synesthesia is a benign neurological condition in which subjects experience an automatic, involuntary and idiosyncratic cross-activation of the senses. For them, the information from one sensory modality (e.g. sight) triggers a response from another sensory modality (e.g. smell). This condition is estimated to be present in at least 4% of the population (Hubbard, 2007). Dozens of forms of synesthesia exist, and their expression varies from one individual to the next (Simner, 2013). Smell-touch synesthesia affects around 0.3% of the synesthete population (Day, 2011). It induces olfactory perceptions according to textures and other tactile sensations. Synesthesia impacts the day-to-day lives of synesthetes, as it affects the way they perceive and feel their environment. Since it is a form of divergent neurocognitive development (Ward, 2019), it can be considered a form of neurodiversity. Like any form of neurodiversity, its manifestations are difficult to express with language. This can lead to feelings of exclusion (Day, 2005; Nielsen et al., 2013). One way to promote inclusion is through empathy (Masten, Morelli, & Eisenberg, 2011), which can be facilitated through physically engaging artworks and exhibitions (Raboisson, 2014). Our goal was to create an artistic experience that allows participants to physically experience the reality of touch-smell synesthesia. However, as there was no media able to mediate this sensory phenomenon, we tried to understand how to design and build one. By applying a research-creation methodology, and in particular the principles of the DIY “maker movement,” we intended to create a prototype capable of simulating the effects of touch-smell synesthesia. However, this process of creating a device for the technological mediation of the senses proved to be a difficult one, and our final prototype is not exactly what we hoped to produce. We went as far as our technical skills allowed us to and we delivered an object that would require some future improvements. This present Master’s thesis presents the conceptual and theoretical frameworks as well as the process of creating this artefact. Based on the lessons learned from our practice analysis, we conclude that there are several social and technical issues that need to be addressed in the “maker” practice as a method for creating technological artifacts. Finally, we discuss the role that such a research-creation project can play in raising public awareness of synesthesia and neurodiversity.

Purpose: Neurodevelopmental difficulties are correlated with lower mental well-being and more mental health problems. Issues in social relations such as bullying are a prominent risk factor in a social setting of high school, have also been associated with the status of disability. This thesis investigated the relation between mental health problems, mental well-being, and bullying in adolescents with self-reported neurodevelopmental difficulties and compared these with adolescents with Other disabilities. Materials and methods: Data from a Swedish longitudinal survey study (LoRDIA) was used. Mental health problems were measured through emotional and conduct problems scales of SDQ, mental well-being was measured with MHC-SF, and a bullying questionnaire was used. Results: Adolescents with NDD experience more bullying victimization and perpetration than adolescents with Other disabilities such as physical disability and autoimmune diseases. Significant association to bullying perpetration was found in NDD adolescents. Adolescents with Other disabilities indicated high mental well-being compared to NDD. While gender predicts high mental well-being, disability and emotional problems have a negative relation with it. Conclusion: Adolescents with NDD report more bullying victimization and perpetration experiences in comparison to adolescents with Other disabilities. Emotional problems have an inverse relation for predicting high mental well-being for adolescents with NDD and Other disabilities.

De récentes études ont démontré que le profil féminin de l’autisme apparaît méconnu au sein de la communauté psycho-médicale, de sorte que de nombreuses femmes autistes échappent indéfiniment au diagnostic de leur condition neurologique ou ne prennent connaissance de celle-ci qu’une fois leur vie adulte bien entamée. Si le fait d’enfin prendre connaissance de l’origine de leur différence peut permettre aux personnes se découvrant autistes à un âge avancé de mieux comprendre leur propre fonctionnement et de favoriser le respect, par elles-mêmes comme par autrui, des besoins particuliers lui étant associés, les significations se voyant accordées au diagnostic d’autisme tardivement obtenu d’un point de vue identitaire apparaissent peu explorées à ce jour. La présente recherche a ainsi pour objectif premier d’analyser, sur la base de vingt entretiens semi-dirigés menés auprès d’autant de femmes autistes diagnostiquées à l’âge adulte, la façon dont ces dernières sont amenées à redéfinir la conception et l’expression de leur identité personnelle suivant la confirmation de leur différence neurologique. Notre cueillette de données ayant été réalisée en terrain mixte, soit au Québec en France, nous nous intéressons également à la manière dont un tel processus de redéfinition identitaire peut se voir influencé par le contexte géographique dans lequel évolue la personne concernée, et notamment par les représentations dominantes de l’autisme prévalant au sein de celui-ci. Enfin, nous nous interrogeons à savoir si l’émergence de mouvements sociaux luttant pour une meilleure reconnaissance sociale de l’autisme féminin ainsi que pour une plus grande valorisation de la diversité neurologique inhérente à l’espèce humaine peut se voir associée chez nos participantes au développement d’une identité collective en tant que femmes autistes ou, plus largement, en tant que personnes concernées par une forme de neurodivergence. Les résultats obtenus indiquent que l’obtention d’un diagnostic à l’âge adulte semble donner lieu chez les femmes autistes à une reconstruction identitaire globalement positive, mais que plusieurs d’entre elles demeurent réticentes à l’idée d’exprimer leur identité ainsi reconstruite auprès d’autrui dans un contexte social qu’elles estiment marqué par la prévalence d’une conception péjorative et stéréotypée de l’autisme de même que par une culture de la conformité exposant toute personne dont la manière d’être ou d’agir s’écarte des normes en place à un certain risque de stigmatisation. Nous avançons toutefois que le fait de revendiquer ouvertement leur différence à titre individuel et collectif pourrait justement permettre aux femmes autistes de contribuer à une évolution des mentalités entourant leur réalité singulière et, du fait même, à la création d’une société plus tolérante et inclusive en matière de neurodiversité. / Recent studies have shown that the female profile of autism remains largely unknown within the psycho-medical community, to the extent that many autistic women see their condition go indefinitely undetected or only get diagnosed well into their adult lives. While becoming aware of the origin of their difference may enable people discovering themselves to be autistic at an advanced age to better understand their own functioning and to ensure respect, by themselves and others alike, for the particular needs associated with it, the ways in which the late diagnosis of autism can be interpreted from an identity point of view appear to have been little explored to date. The primary objective of this research is thus to analyze, on the basis of twenty semi-structured interviews conducted with as many autistic women diagnosed in adulthood, the ways in which they can be led to redefine the conception and expression of their personal identity following the confirmation of their neurological difference. As our data collection was carried out in two distinct locations, namely in Quebec and in France, we are also interested in how such an identity redefinition process might be influenced by the geographic context in which the person concerned evolves, and especially by the dominant representations of autism prevailing within that context. Finally, we examine whether the emergence of social movements struggling for better social recognition of female autism and for greater appreciation of the neurological diversity inherent to humankind can be associated in our participants with the development of a collective identity as autistic women or, more broadly, as people affected by some form of neurodivergence. Our results indicate that the diagnosis of autism in adulthood appears to result in an overall positive identity reconstruction for autistic women, but that many of them remain reluctant to express their reconstructed identity to others in a social context they perceive to be marked by the prevalence of a pejorative and stereotypical conception of autism and by a culture of conformity that exposes anyone whose way of being or acting deviates from the norms in place to a certain risk of stigmatization. We suggest, however, that openly asserting their difference as individuals and as a group may enable autistic women to contribute to a change in attitudes regarding their specific reality and, as a result, to the creation of a more tolerant and inclusive society with respect to neurodiversity as a whole.

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