A utism is a contentious diagnostic category, one that has long embodied the shifting tensions between changing models of medical authority, paradigms of expertise and evolving regimes of care. Its history spans from the dominance of psychogenic explanations in mid- and late twentieth-century psychiatry to the more recent consolidation of biomedical approaches grounded in neurology, genetics and behavioural science. Yet autism is not only a medical construct: it has also become a deeply social and political issue. Its contemporary significance is shaped by the growth of self-advocacy and parent-led movements, ongoing debates over the state’s obligations in providing care and support, and wider efforts to recognise autism as a legitimate form of neurodiversity deserving full social and political inclusion.
Becoming Advocate examines how autism emerged in Portugal as both a diagnostic category and a political concern. Beginning with its early recognition within child psychiatry, the book traces how autism gradually became visible through shifting clinical frameworks, institutional reforms, and the growing involvement of families who confronted the inadequacies of state services. Through historical analysis and ethnographic fieldwork, it reads archives, clinical encounters and parental narratives as sites where diagnosis, care and citizenship are continually negotiated. A central argument of the book is that parent-led advocacy reshaped the landscape of autism in Portugal. Families not only challenged outdated psychiatric paradigms and demanded concrete improvements in education and social policy; they also developed new forms of expertise grounded in caregiving. By conceptualising advocacy as a transformative practice, the book shows how parents actively reconfigured their identities as both carers and political actors, advancing claims that linked the intimate labour of care with wider demands for social justice. The book also examines how local activism became entangled with transnational movements. Portuguese parent associations increasingly engaged with global autism rights discourses and adapted them into their own strategies. Social media played a pivotal role in this process. Rather than functioning merely as tools for communication, online platforms operate as epistemic spaces enabling parents to produce and circulate knowledge, negotiating authority, building collective identities, and articulating counter-narratives that resist ableist and pathologising representations of autism. Social media also functions as an infrastructure for mobilisation: a space where parents organise, collectivise and forge forms of translocal solidarity that would otherwise be difficult to sustain in Portugal’s unevenly connected landscape. With most specialist institutions concentrated in major urban centres such as Lisbon and Porto, families living in rural or peripheral areas often face limited access to services and support. Digital networks help bridge these geographical divides, enabling parents to share knowledge, build community and mobilise collectively despite the constraints imposed by distance and inadequate state provision, expanding the possibilities for civic participation and reimagining the terrain of care beyond formal institutions. Finally, the book explores autistic subjectivities as a challenge to normative assumptions about personhood and citizenship and compels a rethinking of the relationship between rights and civic belonging in contemporary Portugal. In bringing these strands together, Becoming Advocate argues that autistic modes of being and parental practices of care jointly unsettle these assumptions, revealing the intertwined institutional, social and affective dimensions that shape autism and belonging in contemporary Portugal.
To appreciate the contours and the development of this movement – and the particular form it took in Portugal – it is essential to situate it within the national context. While parent-led advocacy and the broader autism rights movement have gained momentum across Europe and North America since the 1960s, inspired by the social model of disability and its politicisation of the issue, Portugal’s own disability movement emerged later and remains comparatively fragile. This delayed development is a direct product of the country’s distinctive cultural, historical, economic and political forces, particularly its experience with dictatorship and the subsequent transition to democracy. This context also shaped academic engagement. Internationally prominent by the late 1980s, disability studies only gained a recent foothold in Portugal (Aguirre and Moreira Ribeiro 2021: 33–34). For years, disability research was dominated by the medical sciences, anchored in a medical rather than a social or cultural model. Consequently, disability remained ‘very embryonic both in terms of the political mobilisation of disabled people and in the academic world’ (Fontes, Sena Martins and Hespanha 2014: 7). Against this backdrop, Becoming Advocate offers the first anthropologically informed study of autism advocacy in Portugal. It provides an empirically grounded account of how parent-led activism unfolds within this semi-peripheral, postauthoritarian welfare state, situating its rise within the country’s distinctive sociopolitical landscape. While the Anglophone world has produced a rich body of research on autism rights and neurodiversity (McLennan et al. 2025), this book examines how families in an underexplored southern European context navigate evolving debates about care, recognition and citizenship rights.
Building on this account, this book contends that, despite its diversity and the heterogeneity of parental experiences, parent-led autism advocacy in Portugal constitutes a cohesive movement actively shaping policy and public discourse. Parents are increasingly asserting their role as political actors, leveraging both institutional channels and digital platforms to politicise their struggles, mobilise collective action, and forge translocal support networks. Their activism highlights the pervasive exclusion, stigma and discrimination within schools, workplaces and welfare institutions, while simultaneously challenging the principle of ‘normalisation’ that underpins contemporary inclusion policies. In this way, they not only contest the boundaries of existing citizenship but also envision a more equitable society. By bringing ethnographic insights into dialogue with theories of citizenship and inclusion, the book contributes not only to the specific context of Portuguese autism advocacy but also to broader debates on social justice and inequality. The anthropological lens employed here serves a dual purpose: it critically examines the policies and knowledge systems that reproduce exclusion while prompting reflection on our own unspoken practices of othering. This approach reveals how the moral economy of citizenship is built upon implicit hierarchies of human worth, thereby politicising disability and rendering visible the ordinary, often invisible, mechanisms of enduring discrimination. Positioned at the margins of Portuguese society, autistic people bring these social tensions into sharp relief. Yet it is precisely from this periphery that their parents’ activism generates transformative potential. Their struggle for recognition transcends a mere demand for rights; it is an ethical and political project that gestures towards a collective emancipation, a profound reimagining of what it means to live together as equals.
As a non-autistic researcher, I approach this work with an explicit awareness of the positional perspective from which I write. My analyses are shaped by my own interpretive frameworks and by the vantage point from which I encounter autistic people, families and professionals. While I draw on long-term ethnographic engagement, collaborative conversations, and sustained attention to autistic scholarship and activism, my perspective cannot substitute for autistic lived experience. Rather than claiming neutrality or completeness, I aim to recognise how my positionality shapes what becomes visible, what remains obscured, and how certain narratives gain analytic weight. This reflexive stance is a core methodological and ethical commitment to remain accountable to the communities whose lives and struggles are central to this work.
First, the account I offer of parental activism is necessarily a partial perspective. I fully recognise that many parents may not see themselves reflected in my interpretations, which are shaped by my subjective role as an ethnographer and the specific profiles and stories of the parents I encountered. The diversity of autism is also mirrored in the diversity of parental advocacy, and, as an anthropologist, I aim to embrace and make visible this empirical complexity. Second, autism research has been rightly criticised for privileging the perspectives of parents, caregivers and professionals, thereby marginalising the voices of autistic individuals themselves. A central tension in this field concerns the claims adults make on behalf of children – what parents perceive to be in their best interests – versus children’s own ways of expressing agency (Locke et al. 2012). While parents often assert authority to reclaim space from professionals and navigate institutional barriers, their goals and priorities may sometimes diverge from those of their children, highlighting the tension between parental advocacy and children’s own expressions of agency. Recognising this complexity prevents the idealisation of parental authority and underscores the importance of attending to children’s perspectives. Autistic voices and experiences are central to understanding autism, and while this study attends to them partially, its primary focus is on parents. Both historical and methodological reasons shape this decision. In Portugal, parents played a pivotal role in the recognition of autism as a diagnostic category and in the establishment of support structures, such as advocacy associations. From the late 1970s onwards, these associations emerged as key institutional actors, compensating for state inadequacies by providing essential services and actively shaping public debates on rights, inclusion and citizenship. This historical significance was mirrored in my fieldwork access, which took place through these associations and, over time, positioned them as central sites for observing how autism was made visible in Portugal, as well as how care, advocacy and autism expertise were negotiated. Focusing on parental mobilisation thus allows for an analysis of autism politics at the intersection of family experience, associational life and welfare transformation. Parents take centre stage in this book not because autistic voices are irrelevant, nor because parents hold ultimate or primary epistemic authority over autism, but because their activism has profoundly shaped how autism has been recognised and institutionalised in Portugal. Their struggles illuminate the affective and political labour through which autism became a public concern, while also revealing the persistent tensions between institutional and grassroots forms of advocacy.
My analytical approach is further shaped by a deep engagement with neurodiversity and autistic scholarship. The neurodiversity paradigm, originating in autistic activism, reframes neurological differences as forms of human variation, shifting attention from pathology to diversity and from cure to rights. As an analytic, it raises critical questions about value, power and citizenship – who counts as a full participant in social life, under what conditions and on whose terms (Bertilsdotter Rosqvist, Chown and Stenning 2020). Neurodiversity has developed into a critical paradigm for analysing autism and other neurodivergent conditions (Kapp 2020; Stenning and Bertilsdotter Rosqvist 2021). This framework underpins my analysis throughout the book, informing how I examine parents’ negotiations with institutions and society at large. It has also helped me trace how psychiatric, policy and parental discourses in Portugal have variously resisted, aligned with, or been unsettled by neurodiversity, revealing both the persistence of medicalising logics and the tensions between normalisation and acceptance. In line with the movement’s rallying call, ‘Nothing about us without us’ (Sinclair 2013), the book meaningfully engages with autistic voices in scholarship (Fletcher-Watson et al. 2019). This reflects an ethical and epistemological commitment to centring these perspectives. Consequently, I draw upon the work of autistic scholars and activists whose contributions have shaped the analytical framing of this research, spanning classic first-person accounts (Willey 1999, 2001, 2011; Prince-Hughes 2004; Schneider 1999) to contemporary neurodivergent scholarship (Milton and Lyte 2012; Walker 2021; Bertilsdotter Rosqvist et al. 2023a, 2023b; Stenning 2024). Autistic-led scholarship has challenged the dominance of parental and professional narratives on autism, demanding recognition of autistic self-representation (Milton 2012, 2014). Their work also challenges normative assumptions about development, autonomy and communication, advocating for a society in which neurodivergent lives are valued on their own terms (Price 2022; Yergeau 2017). Although not autistic, Steve Silberman’s NeuroTribes (2015) also provides a foundational historical account of the shifting scientific and cultural understandings of autism. These perspectives have deeply informed my analytical approach, particularly in questioning the assumptions that underlie caregiving, advocacy and the politics of representation.
These scholarly frameworks find a parallel in the growing visibility of autistic-led movements, particularly in Europe and North America, showing how autistic people mobilise collectively to contest their exclusion and reframe research priorities (Chown et al. 2023). Similar developments are emerging in Portugal, where autistic-led initiatives and online platforms challenge dominant parental discourses and call for greater recognition of autistic voices (Serra et al. 2024). While these initiatives reflect global trends, they are distinctly shaped by Portugal’s specific institutional and cultural context. Because parental mobilisation historically preceded the consolidation of autistic self-advocacy, examining this earlier movement provides an essential backdrop for understanding how autistic voices are now transforming the landscape of autism politics in Portugal. I hope that this book will be read in complement to this growing body of autistic scholarship and activism that is reshaping the field locally.
It is crucial to acknowledge that neglecting autistic first-person accounts constitutes a form of epistemic injustice (Chapman and Carel 2022). This includes the oversight of autibiographies, autistic autobiographical writings that shape the very language and frameworks through which autistic lives are understood (Dinishak 2021; Dinishak and Akhtar 2023). Excluding non-speaking individuals or those using alternative communication further entrenches this injustice. Enactivist and ecological perspectives suggest that autism is relational, emerging between a person and their sociomaterial environment, and that epistemic justice can be advanced by reshaping contexts to support autistic forms of communication, thereby reducing disabling experiences arising from neurotypical biases (Catala et al. 2021; Billington, Knott and Craythorne 2025; Krueger 2021; Krueger and Maiese 2018). Therefore, although this study focuses on parents, the voices and agency of autistic children are central to my ethnography. Their unique ways of being (their communicative rhythms, sensory engagements and embodied forms of expression) were fundamental to my understanding of how autistic lives are enacted. Crucially, these expressions did not simply exist alongside parental activism; they actively co-constituted it, continually shaping the strategies, priorities and very nature of their parents’ advocacy. Attending to autistic children’s agency required adapting my fieldwork methods. I co-created – with them and their parents’ guidance – flexible and responsive environments that respected their sensory preferences and communicative rhythms. This involved tuning my behaviour to minimise intrusive or disturbing actions and questioning neuronormative research conventions, such as expectations of direct eye contact or linear conversation, so that children could lead interactions and define participation on their own terms.
In embracing its limitations, this book offers a critical analysis of how advocacy is performed, contested and institutionalised by those who often speak for autistic children: a position of significant political influence and ethical complexity. It does not claim to represent autistic experience directly but underscores the necessity of accountability to autistic communities and the development of participatory research frameworks that include neurodivergent individuals as co-producers of knowledge. By extension, it issues a call for a new kind of scholarship in Portugal, one built on inclusive and ethically attuned methodologies that truly honour the multiplicity of autistic voices and experiences.
The positional and ethical commitments highlighted above directly shaped the methodological choices that inform this study. This book is grounded in doctoral research on parent-led autism advocacy in Portugal (2012–18), which I have since expanded with updated literature and follow-up conversations and interviews (2023–24). The core data derive from nearly two years of ethnographic fieldwork with nineteen activists (fifteen mothers and four fathers). All participants were white Portuguese citizens, primarily in their late 30s to 40s, from working- and lower-middle-class backgrounds, often employed in the service sector, and represented diverse gender and sexual identities.
The research employed a multi-sited ethnographic approach (Falzon 2016; Hine 2007) to trace autism advocacy across interconnected local, national and digital domains. This approach allowed me to track how advocacy narratives emerged, circulated and transformed, as well as how activism is enacted and experienced across the diverse platforms (offline and online) and how it intersects with the broader global dynamics of autism politics. So, while based in the Lisbon metropolitan area, where I participated in home visits, institutional meetings, public marches and events (conferences, workshops), I also engaged deeply in online spaces, particularly Facebook groups and online forums where parents shared their experiences, coordinated collective actions and articulated their political strategies. Using snowball sampling, I connected with parents (predominantly mothers), several of whom became key interlocutors. Our interactions spanned in-depth interviews, participation in daily routines and advocacy meetings.
To capture the interwoven nature of the parent-led autism advocacy which unfolds across entangled terrains where analogical and digital lived experiences and engagement are inseparable, I adopted a hybrid ethnography (Hine 2015a; Hjorth et al. 2017; Pink et al. 2016). This approach does not treat online and offline realms as separate but as mutually constitutive. This reflects a broader anthropological shift that, influenced by the digital turn of the late twentieth century, has prompted ethnographers to reconsider what constitutes a fieldsite, as sociality increasingly unfolded in online spaces, as well as the methods to engage with the digital reality. Hine (2000) proposed studying online cultures on their own terms, treating the internet both as a cultural form and as an everyday practice embedded in everyday life. Early work on ‘cyberspace’ cast it as a novel social arena where people formed communities through text and avatars. Ethnographers responded with new strategies. Multi-sited approaches followed people and narratives across online and offline contexts. By the mid-2000s, as digital media permeated daily routines, researchers increasingly treated online and offline worlds as entangled, tracing how digital interactions shape and are shaped by everyday offline lived experiences. Hine later advocated an ‘embedded, embodied, everyday’ ethnography attentive to how internet use remains grounded in bodies and practice (Hine 2015b). The ethnographic lens thus expanded to include the digital, which in turn has reshaped anthropology’s approach to social life (Ginsburg 2008), prompting scholars to explore how social media produces new forms of knowledge and identity as well as transforms political participation and expression.
In my research, social media platforms, particularly Facebook groups, functioned not merely as communication tools but as essential infrastructures of political engagement (Postill 2012). They were vital arenas where parents articulated concerns, built affective alliances, resisted stigma and coordinated collective action, echoing the role of digital media in other social movements (Downing et al. 2001; Dahlberg-Grundberg 2015; Marichal 2013; McCosker 2015). For parents of autistic children, these spaces often serve as lifelines for both emotional support and political mobilisation as they advocate for their children’s health and education rights (Rehm et al. 2013; Wright and Taylor 2014), raise public awareness, and engage directly with scientific knowledge and controversies surrounding autism (Feinstein 2014; Langan 2011). Yet, access remains mediated by socioeconomic inequalities, which continue to shape whose voices are heard and whose are excluded (Jordan 2010: 224–25). Ultimately, this hybrid methodology reflects the hybrid reality of autism advocacy itself. Parents’ activism operates between domestic routines and digital campaigns, between care work and political engagement. A research design that moves fluidly across these terrains was therefore essential for understanding how parents navigate advocacy, claim recognition and reimagine citizenship.
A set of specific ethical considerations shaped how I navigated the field. Some of my fieldwork interlocutors belong to Facebook-based advocacy groups, including The Advocacy Circle, which became a central fieldwork site. To ensure transparency, I created a dedicated Facebook profile under my real name, clearly identifying myself as an anthropologist researching autism advocacy. This profile enabled me to interact with participants, disseminate information and support initiatives while maintaining clarity about my role. Data production followed an interactive and reflexive process, involving constant movement between interview transcripts, field notes, offline and online interactions, and theoretical reflection. All participants provided informed, voluntary consent for both in-person and digital participation. All identifying details have been anonymised, and participants’ confidentiality and right to withdraw were respected. Particular care was taken to ensure the ethical integrity of online engagements, recognising the unique vulnerabilities and sensitivities of digital spaces.
Throughout the book, I adopt identity-first language (e.g. autistic person) in alignment with the preferences of my interlocutors and many autistic advocates and researchers (Bury et al. 2023; Keating et al. 2023) and with efforts to destigmatise autism by recognising it as a natural form of human diversity. The choice between identity-first and person-first formulations is indeed not merely linguistic but deeply ideological, reflecting contrasting understandings of autism as either an integral part of personhood or a separable condition, as implied in the person-first language (e.g. person with autism). This debate persists as terminology shapes both individual identities and collective narratives. Ultimately, the discussion about language is not a trivial matter; it reflects deeper societal assumptions about autism, personhood and the goals of therapeutic intervention. I also avoid terms such as high- and low-functioning, opting instead to discuss levels of support (Hartman et al. 2023), and keeping with inclusive and non-discriminatory language practices. These considerations were especially pressing in digital contexts, where the boundaries between the public and the intimate were particularly difficult to maintain.
Social media emerged as a site of mediated intimacy where personal accounts, caregiving narratives and practices, and political action intersected. Parents shared stories about their children in both public and closed groups, revealing a complex negotiation between visibility and privacy. As Chambers (2013) notes, digital platforms have transformed how intimacy is constructed and displayed. My participation in these communities demanded continuous ethical reflection, particularly regarding privacy, consent, and the blurred line between observation and participation. Although my researcher profile was transparent (clearly identifying my role, institutional affiliation and research aims), the distinction between professional and personal engagement often blurred as relationships deepened over time. I approached participants’ digital traces (posts, photos and comments) not as data automatically available for analysis, but as ethically sensitive material requiring explicit consent. Even when content was publicly accessible, I sought permission before citing or reproducing it, and I renewed consent when online relationships transitioned into offline encounters. Protecting the privacy and dignity of autistic children was a matter of particular concern. They were present during my home visits, I interacted with them, and their lives were frequently discussed or depicted online through parents’ stories and photographs. These instances foregrounded the ethical complexities of sharenting (Steinberg 2017): parents’ act of sharing children’s lives on social media. Although often motivated by care, pride, or a desire for advice and solidarity, sharenting can inadvertently infringe upon a child’s sense of dignity, autonomy and right to privacy. Even when explicit consent was granted, I deliberately excluded from my analysis any material that, in my judgement, might compromise a child’s dignity or long-term privacy. These ethical challenges also drew my attention to the affective and relational dimensions of fieldwork itself. As a non-parent of an autistic child and non-autistic ethnographer, my presence in the field often prompted a question that was both simple and profound: ‘Why did you choose to study autism and advocacy?’ This query underscores a common assumption in disability-related research: that scholarly interest is typically born from direct, personal experience. When such a personal connection is not immediately visible, it can render the researcher’s motivation unintelligible to a community for whom these issues are matters of daily life and intimate concern. My commitment to the topic, therefore, required continual explanation: not as a justification, but as an entry point into a conversation about the broader political, social and ethical dimensions of disability that can, and should, compel scholarly attention from all corners of society. Such moments of tension and curiosity became part of the relational fabric of the research. Following Behar (1996), I embraced a position of vulnerability, recognising that long-term ethnographic engagement entails emotional investment, moral commitments and reciprocal trust. Emotion was not peripheral to this research but central to how knowledge was co-produced. Parents narrated their experiences with determination, exhaustion, joy, pride and resilience, which shaped not only the substance of our conversations but also their tone and rhythm. These emotions represent an epistemic resource: they structure my understanding, deepen my connection with interlocutors, and infuse my fieldwork with more ethical complexity. Such emotional engagements, far from compromising analytical rigour, deepened my interpretations and illuminated the affective textures of advocacy and care. In this sense, my fieldwork was profoundly shaped by a process of emotional and sensory attunement. I draw here on Wikan’s (1992) concept of ‘resonance’, an emotional engagement that allows a researcher to connect with others’ worlds affectively, not just intellectually, and align it with Spencer’s (2011) view of ethnography as a relational and aesthetic practice. Together, these frameworks position knowledge not as the product of detached observation, but as something that emerges through shared emotional and sensory experiences. These methodological and ethical reflections are not separate from but deeply embedded within broader scholarly conversations about disability, autism, and the relational dimensions of care and kinship – conversations that have shaped both the questions I bring to this research and the analytical frameworks I employ.
Anthropologists have examined how societies construct and respond to disability, situating it within broader social, political and moral worlds (Ginsburg and Rapp 2013; Reid-Cunningham 2009). Early ethnographies (e.g. Murphy 2001) unsettled biomedical framings by foregrounding lived experience and insisting that disabled people are not passive recipients of care or mere objects of medical intervention, but active subjects shaping their social worlds. This shift and the commitment to foregrounding disability’s relational dimensions were both pivotal in revealing how norms of ability, productivity and value sustain wider structures of inequality. Through this lens, disability emerges not as an individual problem but as a terrain where social worth, belonging and citizenship are continuously negotiated, offering a transformative vantage point from which to rethink the fluid and contested boundaries of the human (Ginsburg and Rapp 2020).
Within this broader conversation, anthropological work on autism has reimagined fundamental questions about sociality, personhood and care. Foundational studies, such as those by Ochs et al. (2004), challenged deficit-based understandings by recognising autistic people as participants in social worlds whose communicative and relational practices invite us to rethink what counts as interaction, empathy and connection. Drawing on autobiographies and first-person narratives, scholars have argued that there are distinct yet meaningful forms of ‘autistic’ sociality (Ochs and Solomon 2010), unique ways of being and relating that broaden, rather than constrain, human variability (Hacking 2009a; Heasman and Gillespie 2019). As Solomon (2010) observes, anthropology has also contributed by conceptualising intersubjectivity as practice-based, privileging lived experience, and attending ethnographically to everyday life. The edited volume by Davidson and Orsini (2013) consolidated this approach, reaffirming anthropology’s role in challenging enduring assumptions about autistic people’s capacities for social interaction and agency. Later ethnographies deepened these insights by examining how autistic and other neurological subjectivities are co-produced at the intersection of the body and the sociomaterial environment. Wolf-Meyer (2020) emphasises the deep interconnections between bodies and their environments, proposing that subjectivity arises from the nervous system’s ongoing engagement with the world rather than as an isolated, internal phenomenon. Similarly, Belek (2017) highlights the relational constitution of autism, demonstrating the crucial role of the body and the senses in the enactment of autistic subjectivities. These studies collectively emphasise that neurological experiences are not merely internal phenomena but are shaped continuously through engagement with the social and material world.
More recently, research has focused on the political life of autism, examining how it is co-produced and how parent associations, disability rights initiatives and policies – such as those governing the public mental health system – interact and sometimes conflict (Orsini and Smith 2010; Ortega and Müller 2021). These studies link everyday experiences to the analysis of the sociopolitical spheres, demonstrating how local imaginaries, therapeutic regimes, diagnostic practices and these broader contexts continuously shape and reshape autism. Ethnographic research has also examined how families navigate diagnosis, interventions and care, frequently negotiating tensions between competing moral expectations and institutional logics (de Wolfe 2014; DePape and Lindsay 2015; Eyal et al. 2010; Grinker 2007; Ooi et al. 2016; Silverman 2012). Cross-national analyses (Cascio 2015; Fein and Rios 2018; Orsini and Smith 2010) further reveal the epistemic and political consequences of autism’s growing visibility across diverse welfare regimes. Meanwhile, studies of online spaces highlight how digital networks have become crucial arenas for the development of ‘autistic culture’ (Davidson 2008), facilitating new forms of collective identity and mutual support (Bagatell 2010), as well as political mobilisation and expressions of citizenship (Bumiller 2008).
Parallel to this growing body of work, anthropologists have explored how disability reconfigures kinship and relatedness. Foundational studies by Rayna Rapp and Faye Ginsburg (Rapp and Ginsburg 2001, 2011; Ginsburg and Rapp 2024) on ‘new kinship imaginaries’ have shown how parenting a disabled child transforms notions of family, personhood and citizenship. More recent analyses (Lilley et al. 2020, 2023; Smith-Young et al. 2022) reveal how parent activists navigate tensions between inclusion and normalisation, and how their advocacy is shaped by affective labour, moral responsibility and the pursuit of justice. Together, these works foreground the centrality of relationality and care in the making of kinship and political action. They show that disability reconfigures both the ethics of care and activism, as parents mobilise affectively and politically, creating new imaginaries of relatedness, belonging and political participation. My own approach draws on this ethnographic sensibility – an attention to how political life unfolds through ordinary acts of care, hope and endurance. Following Cheryl Mattingly (2010, 2014), I approach parental activism as a practice that takes place in the ‘moral laboratory’ of everyday life: a space for experimenting with moral possibilities and cultural resources in the face of hardship. Moral transformation, she argues, does not arise only in moments of rupture or crisis but is embedded in the routines and contingencies of everyday life, where people discern and test different ways of living towards what they perceive as a good life (2014: 63). This conceptual lens is particularly valuable for understanding Portuguese parents navigating autism diagnosis, therapy and advocacy, who engage in similar forms of moral experimentation as they negotiate institutional constraints and reimagine both their family and societal relations. Moral experimentation, in this sense, is not exceptional but woven into the routines of care and advocacy. Mattingly’s notion of the ‘paradox of hope’ (2010) – the simultaneous insistence on possible futures and recognition of structural constraint – also captures the emotional tensions that run through these experiences, particularly concerning autistic children’s transition to adulthood and long-term care.
Interwoven with these practices of care and advocacy is the role of affect, which, in my work, provides a crucial analytic for understanding these processes. By affect, I refer to the bodily intensities and labours that exceed language, shaping personal experience and political action alike. I approach affect not as a private feeling but as a force circulating across bodies and institutions, structuring how people face diagnoses, inhabit care relationships and imagine futures. The ‘affective turn’ in the humanities and social sciences (Clough and Halley 2007; Gregg and Seigworth 2010) has shown how emotions and bodily intensities are socially and politically generative. Drawing particularly on Sara Ahmed (2004), I understand affect as relational and world-making: it circulates between bodies, producing attachments, orientations and collective formations. Its Spinozian genealogy – where affectus refers to the capacity to act and be acted upon – highlights its simultaneously embodied and political nature. In my fieldwork, affect becomes a critical lens for examining care, intimacy and kinship, showing how ordinary gestures of caregiving, advocacy and resistance carry moral and political significance. That said, I use affect in three interrelated ways. First, as an analytic tool for parental advocacy, to understand how parents mobilise not only through formal claims but also through the circulation of feeling, emotional attachment and urgency. Second, as a lens on embodied resistance, to highlight how autistic presence – gestures, movements, refusals – disrupts normative frameworks of communication and agency. Third, as a political force, to show how affect shapes claims to recognition, inclusion and belonging, making visible the inseparability of care, emotion and politics. In this sense, affect is not secondary to advocacy and citizenship but constitutive of them. In the Portuguese context, affect is particularly salient for understanding parental advocacy. Emotions such as frustration, hope, anger and pride become resources for navigating fragile systems of welfare and education. Mothers and fathers deploy affective labour in interactions with schools, clinicians and government agencies, while autistic embodiment generates encounters that unsettle normative expectations of communication, agency and personhood. I, therefore, trace how affect circulates between parents, children, clinicians and bureaucracies, becoming both a political resource and a site through which citizenship is enacted.
This book also charts the evolution of parent-led autism advocacy in Portugal, tracing its trajectory from isolated family struggles into a broader, though still fragmented, movement – a transformation profoundly shaped by the politics of autism recognition. In doing so, it contributes to debates on disability rights, digital activism, and the transformative potential of grassroots mobilisation in contexts shaped by state retrenchment, precarious care infrastructures, and neoliberal reform. At the same time, it remains attentive to the ambivalences within parent-led activism, where speaking for autistic children can simultaneously empower and marginalise, reflecting broader ethical tensions around representation, voice and authority. By situating the Portuguese case within these wider debates, this book brings a much-needed southern European perspective to the anthropology of autism and disability. In Portugal – where psychoanalytic traditions have long shaped child psychiatry and the welfare state developed late – the emergence of autism as both a diagnostic and sociopolitical category has followed distinctive trajectories. The book traces how these trajectories have been shaped by the legacies of authoritarian governance, institutional psychiatry and Catholic-inflected moralities of family life, revealing how particular cultural and historical conditions have configured what it means to care and advocate for autism in the country. While sociological research on disability has begun to map patterns of exclusion and vulnerability (Fontes and Sena Martins 2023), anthropological work on autism and advocacy remains limited. This study shows how local histories of psychiatry, authoritarian governance and welfare provision intersect with global ideas of care, inclusion and citizenship, and offers an ethnographically grounded account of how families and activists negotiate autism’s meanings and moral stakes in a context marked by ongoing struggles for recognition. In doing so, it contributes to three broader conversations within anthropology and disability studies. First, it expands the comparative anthropology of autism beyond the Anglophone world. Much of the existing literature has focused on North American and northern European settings where neoliberal forms of citizenship and individualised therapeutic regimes dominate. By contrast, this book explores how autism takes shape within a late-developing welfare state, where collective ethics of care and enduring psychoanalytic legacies co-exist uneasily with newer biomedical and behavioural models. The Portuguese case thus provides a critical vantage point for rethinking how diagnostic categories and forms of advocacy are transformed and made meaningful within distinct moral and institutional ecologies. Second, it advances an anthropology of care attuned to affect and moral practice. The book shows how Portuguese parents engage in everyday moral experimentation as they navigate therapy, bureaucracy and activism. Their efforts are not only pragmatic responses to institutional scarcity but also moral projects through which they reimagine relatedness, responsibility and the good life. By foregrounding affect as both analytic and ethnographic object, the book demonstrates how emotions – hope, frustration, anger, pride – function as political forces that animate advocacy, sustain endurance and bind collectives together. Third, it rethinks disability and citizenship through the lens of interdependence. The book suggests that autism activism in Portugal carries forward a vision of citizenship that extends beyond liberal autonomy to encompass care, relational dependence and mutual recognition. Parents’ advocacy, often driven by affective labour and ethical commitment, exposes the limits of state provision and reclaims care as a public, political concern. In this sense, the book contributes to ongoing debates in critical disability studies and feminist theory about the relationship between care, justice and social reproduction – showing how intimate labours of care can become acts of civic participation and critique. Taken together, these contributions reposition Portugal within global discussions of disability and citizenship. They also suggest that the anthropology of autism has much to gain from attending to the moral and affective infrastructures that sustain collective life in the face of institutional neglect. By tracing how Portuguese families transform care into a mode of political engagement, this book offers a conceptual vocabulary for understanding how affect, kinship and activism intertwine in the making of more just futures.
This book unfolds across three interconnected parts that move from history to ethnography, and from institutions to the everyday worlds of families. Together, they trace how autism in Portugal became both a diagnostic and political category, and how parents’ struggles for recognition and care redefined what it means to belong and to act as citizens.
Part I lays the historical and institutional groundwork. It traces the emergence of autism within Portuguese psychiatry and examines how shifting scientific paradigms – from psychoanalytic to biomedical models – intersected with the development of child psychiatry, medico-pedagogical institutions and evolving international diagnostic frameworks. This historical trajectory reveals how autism took shape amid broader political and social transformations: the legacies of authoritarianism, the decline of psychogenic models, and the fragmented development of the Portuguese welfare state. It also shows how, over time, parents came to occupy a central role in advocacy and care, bridging the intimate and the political. I approached the two historical chapters comprising this part as an integral part of my ethnographic project, showing that archival research can illuminate contemporary social practices and meanings (see Evans 2017: 6–9, in the section ‘Methodology and the Importance of Historical Enquiry’). Examining how autism has been understood, represented and transformed in Portugal over time, I see history as not merely a backdrop for ethnography, but a vital lens through which to trace the trajectories, tensions and continuities that shape present-day parental activism and autistic experience. Part II builds on this historical foundation to explore the contemporary landscape of parental advocacy. Drawing on ethnographic fieldwork, it examines how parents navigate everyday struggles for education, therapy and recognition while mobilising – collectively and digitally – to challenge exclusion and claim new spaces of belonging. The analysis also focuses on the uncertain passage into adulthood, where structures of care and citizenship often falter, revealing both the fragility of social support systems and the endurance of parental care. Advocacy is conceptualised as a transformative practice that reconfigures parental identities and the relationship between care and politics. This is captured through the notion of the assemblage of transition, where affects, practices and encounters coalesce in unpredictable ways as parents shift from the private, intimate role of caregiver to the public, political role of advocate. Care and advocacy are understood as deeply interrelated, bridging the intimate, emotive and relational dimensions of everyday life with broader claims for social recognition, inclusion and justice. Part III turns to the affective and gendered dimensions of caregiving and advocacy, examining how care, emotion and politics intersect in parents’ daily practices and challenge normative understandings of autonomy, dependency and inclusion. Autism is reframed not as a deficit but as a mode of being that unsettles assumptions of personhood, participation and value. The notion of disruptive subjectivities captures how autistic and disabled ways of being trouble and challenge neoliberal ideals of the economically productive individual, reframing disruptions not as failures of sociability, but as provocations to rethink relationality itself. Across this part, parental activism is understood not merely as an effort to secure resources but as a collective practice of political imagination, where affect functions both as a mode of endurance and a form of resistance, and autistic embodiment actively reshapes the possibilities of inclusion, recognition and relational ethics. Taken together, the three parts offer a layered analysis that moves from structural transformations to the micro-politics of everyday life, tracing a movement – from the institutional to the intimate, from history to the present, from diagnosis to citizenship. By bringing historical and ethnographic perspectives into dialogue, the book shows how autism provides a privileged vantage point from which to rethink care and citizenship: as a social and political phenomenon, it exposes the entanglement of care, kinship and belonging within the unfinished project of equality in contemporary Portugal.
Unless otherwise indicated, all translations from Portuguese into English – including those of interviews, articles and academic texts – were done by me.