1 Introduction: Autism and Global Mental Health

Autism has recently become a major global mental health (GMH) priority. In 2008 Autism Speaks launched the Global Autism Public Health Initiative (GAPH) to enable the development of systematic and sustainable solutions for enhancing awareness, research, training, and service delivery for autism spectrum disorder (ASD) globally. According to GAPH, the ‘global burden of disease’ attributed to ASD is greater than to several other conditions such as ADHD and intellectual disability. 1 Specifically, in the developing countries, individuals with autism and their families are more vulnerable due to poverty, malnutrition, violence, stigma, and scarcity of services (Rosanoff et al. 2015). Although researchers estimate a global prevalence of ASD of approximately one percent of the population, the condition gets undetected and individuals go without treatment in larger parts of the world. Limited expertise and treatments challenge early detection and intervention for ASD (Wallace et al. 2012). Therefore, the GMH agenda for ASD aims to generate cross-national evidence on prevalence, treatment services, and human resources. Moreover, it claims that the global challenge of autism involves developing culturally appropriate and comparable diagnostic instruments as well as affordable care packages to be used by community health workers (Khan et al. 2012).

GMH initiatives for autism recognize alternative, community-based and culturally sensitive approaches from low- to middle-income countries (LMIC) and reject “one-size-fits-all” approaches for ASD research and interventions. And yet, an editorial in Autism Research on Autism and the Grand Challenges in GMH is cautious of “approaches already dismissed by research” (ibid.) such as psychoanalysis, which are still in use in several countries. There is an important tension here between, on the one hand, the need for culturally sensitive and community-based approaches to ASD, and on the other, the dismissal of those approaches when they fail to match the standards of evidence-based practices and interventions. In some countries like Brazil, psychoanalysis constitutes a widely used methodology for ASD within community mental health services. Moreover, as several critics have pointed out, despite GMH’s claims that their proposals are “evidence-based,” “most of them are highly speculative, bordering sometimes on what psychiatrists themselves like to call ‘magical thinking’” (Ingleby 2014, 222), and they exaggerate the benefits of the interventions, thereby promoting the interests of the pharmaceutical industry.

These tensions around culturally sensitive approaches to ASD and GMH claims to ‘scale up’ and generalize those interventions are evoked in Chapters 2 and 3 commented on in this chapter. By providing a range of views on autism theory and practice, policies relating to autism, and options for treatments in the United States, Italy, and Brazil, these pieces offer insightful perspectives on how global issues and controversies around ASD take local form. The controversies they depict play out across global and local spaces and epistemologies. While the global and the local are often conceptualized as discrete spheres, moving beyond the global/local divide has resulted in rich theorization in anthropology, as in Escobar’s notion of “glocality” (2001), Tsing’s concept of “friction” (2005) and Ong’s notion of “global assemblages” (Collier and Ong 2005), as alternative frameworks. Analyzing the controversies as global assemblages “emphasizes their heterogeneity and perpetual movement and traces their limitations through ‘technical infrastructures, administrative apparatuses, and value regimes’” (Bemme and D’souza 2014, 853).

In this chapter I argue that the notorious polarizations around autism might hide important negotiations and spaces beyond such antagonism. Examining systems of care delivery for individuals living with autism in their historical and social context enables us to see how binaries and polarizations (global/local, organicism/anti-organicsm, biological/relational, mental suffering /disability) are challenged and transcended through the pragmatic negotiation and integration of those binaries in the everyday work of those affected by autism, whether that be CAPSi (Centers for Psychosocial Attention for Children and Youth) professionals in Brazil understanding the condition as a disability ‘for legal purposes,’ parents negotiating etiological conceptions and getting services from multiple sites, or neurodiversity activists arguing for non-individualist cerebral subjects. 2

2 Autism as “Problematic Category ”

Controversies around autism’s etiology, treatments and polices emerge at least in part because autism constitutes a psychiatric category exposed to public negotiation by medical and non-medical actors. The ontological status of autism, a “problematic category” (Rosenberg 2006), is in ongoing dispute. For some people it is a form of mental suffering , a mental disorder, a brain disease, an intellectual/relational disability or a different way of being based on the brain’s natural diversity. Through negotiations of the existence of autism (and other such nosological entities) as social facts, a certain amount of power is gained and lost by individuals affected by the diagnosis (Ortega and Choudhury 2011). The debate surrounding the condition extends out to other public spheres, involving activists (parents and caregivers of autistic children), lawyers, and virtual social networks. Autism is in this sense a “contested illness” (Brown et al. 2011). In the absence of lesions or of a biological root and in the face of uncertainty regarding etiology 3 and the best form of care, status and treatment remain open fields of dispute. These clinical conditions are immersed within debates about their legitimacy and medical, social, epistemic, and ontological status. They generate legal arguments, administrative categorizations, and legislative maneuvers. Those who bear these illnesses and their caregivers thus often become activists, mobilizing facts in favor of the condition’s legitimacy and forming groups through which they share their experiences and fight for rights (Ortega et al. 2016).

Controversies around appropriate treatments, service organization, and allocation of resources are often depicted as a conflict between evidence-based, standardizable treatments and interventions designed in developed countries versus alternative, locally developed approaches from developing countries. However, reducing the issues at stake in this way conceals as much as it reveals, occluding the possibility of alternative frameworks and the complexity of conditions on the ground. In the United States, for instance, there is little consensus concerning the appropriate treatments and policies for ASD. Professionals, parents, and self-advocates disagree not only on the appropriate treatments or the best way to allocate resources (on biomedical interventions or on social support initiatives, and the relative amount allocated to each of them), but on whether autism is a disorder to be treated and, if possible, cured, or rather a human specificity (like sex or race) that must be equally respected. In Brazil debates revolve around conceptions of autism as ‘disability’ or as ‘mental suffering ’ and their implications in policies and services organizations.

The two chapters offer a historically informed and ethnographically grounded account of how such issues are experienced, negotiated, and lived in the United States, Italy, and Brazil. The use of an ethnographic approach enables “careful attention to the effects of the specific contexts within which interventions are embedded; simultaneous awareness of how practices in a particular time and place are connected to larger economic, political, and historical force; and close focus on the experiential dimensions of the clinical encounter” (Jain and Orr 2016, 688). The local and historical particularities of the three national contexts alongside the everyday practice of mental health professionals make the abstract, globally circulating ideas meaningful in particular forms. Moreover, they illustrate how the same outlooks on treatments, interventions, service organization, and mental health policies may be beneficial in some contexts and damaging in others. Responding to these conditions involves more than the adaptation of evidence-based practices to different local realities. It requires the production of “locally relevant evidence” to subsidize “best practices and intervention strategies” (Kienzler and Locke 2017, 293) taking into account “contextually situated experience” (White et al. 2017, 18).

Both chapters display complementary views on the public policies and debates around autism in three countries: Italy, Brazil, and the United States. They put forward a very rich and interesting view on the history of psychiatric deinstitutionalization of autistic individuals as well as on the constitution of policies for autism, autism advocacy , and public and ideological debates around conceptions and treatments. Two of the countries, Italy and Brazil, have a similar tradition of psychiatric reform (PR) and deinstitutionalization. In fact, Brazil psychiatric reform follows the Italian model of PR. Unlike these two countries, in which clinical and mental health agendas largely go hand in hand, public mental health care in the United States conforms to a biomedical model and promotes biomedical and pharmacological treatments for mental complaints. The National Institute for Mental Health (NIMH) foregrounds a clinical agenda, frequently in conflict with advocacy and activist movements’ emphasis on social inclusion and citizenship rights for individuals with autism. In each of these settings, we see how conflicts and controversies arise between different biopolitical structures, each with their own set of histories that inform the conceptual frameworks upon which their interventions are grounded. Perhaps more significantly, though, we also gain insight into how we might transcend the terms of these conflicts, instead of continuing to be limited by their dictates.

3 Mobilizing Diagnostic Categories to Pragmatic Ends

The main insight from both chapters is the need to move beyond dichotomies and polarizations. Embracing a historically informed view of autism politics on the ground helps to transcend those dichotomies and polarizations and, as Cascio et al. (in this volume) observe, can “open […] up the space for the recognition of common ground and, perhaps, integration” (p. 77). Both chapters focalize on the local and historical context in which scientific ideas about autism are mobilized, to show that they are not “inherently helpful or harmful,” but are “rendered helpful or harmful in social context” (ibid.). What we see from approaching the autism landscape in the three countries is a pragmatic attitude regarding diagnostic categories, etiology, services, treatments and policies which are negotiated by different actors (medical and non-medical) inside and outside health services. This pragmatic attitude serves to shift the terms of autism debates, taking conceptual binaries and reorganizing, challenging, or integrating them within the everyday practices of the different actors involved: parents, mental health professionals, and individuals living with autism.

Through these pieces, however, we also see how polarizations endure by serving social, political, and personal purposes. Defining what autism is in opposition to what it is not is frequently a means of advocating for the allocation of particular resources (and sometimes, as a means of rejecting others). In Brazil there is a battle over autism at the level of public mental health discourses and policies, opposing two understandings of autism as ‘mental suffering ’ or as ‘disability.’ The first view is advanced by the mental health network and resists diagnosis and specific services for autistic individuals. Parent associations champion autism as disability and favor diagnosis-specific services and evidence-based treatments, in the process taking a stand against psychoanalysis. In Italy, where Basaglia and his colleagues largely rejected psychoanalysis, parent associations largely favor deinstitutionalization and community mental health care. Conversely, the highly influential role of psychoanalysis in the Brazilian psychiatric reform and in the organizations of post-reform mental health services is definitely one of the main reasons for the distrust of anti-asylum and community care models often seen among autism parents’ movements. In the face of what they called “a series of actions aiming to disqualify psychoanalytic approaches to treat persons with autism,” many members of the Brazilian psychoanalytic community insist on the rhetoric of “war” (McGuire 2016), further entrenching a polarized rhetoric. Thus, Luciano Elia, a Lacanian psychoanalyst and professor of psychology at the State University of Rio de Janeiro, believes that “so far only psychoanalysis has proved to be effective. […] in making important developments in autism care and research” (Elia 2013). He labels behavioral psychologists as “pseudoscientists,” who have success with the “managers of the technocratic right wing and of compulsory institutionalization,” and with the middle classes that “crave for a hygienist and fascistoid social order” (Elia 2013, cited in Ortega et al. 2016, 49). Taking such explicitly adversarial stances can thus both bolster calls for intervention, and also protect against forms of intervention considered to be oppressive.

In autism debates in the US, polarizations also serve a purpose. Autistic identity politics draw on neurology to justify and naturalize differences between autistics and neurotypicals, de-emphasizing intragroup differences and in doing so, boosting polarized, dichotomous rhetoric. Emphasizing commonality within the spectrum of autism 4 constitutes an important political move that would counter the critiques of several parent and professional groups, who accuse them of speaking in the name of all autistics (Ortega 2013). In many such cases, we can observe how controversies over autism as a contested category actually function to stabilize it.

Still, polarizations have an important epistemic, emotional, political, and economic cost. The polarization between many parents and professionals (who frequently use an aggressive rhetoric, McGuire 2016) and neurodiversity advocates in the United States obstructs meaningful dialogue around the best way to provide for the needs of people living with autism and their families. In Brazil, the antagonistic understandings hamper serious discussions and cooperation between mental health professionals and parent associations; what is worse, it divides already scarce resources, which are designated for the same public, between two different networks (mental health and disability) with almost no interaction. 5

Of course, not all parent associations in Brazil are against CAPSi, and, what is more important, despite the discourses against diagnosis and specific services, CAPSi gather children together with practical purposes according to criteria of “the children’s profile” which in practice frequently leads to diagnostically homogeneous groups and activities (Cascio et al., in this volume). In this sense, parents in Brazil display a pragmatic attitude when they adopt specialized services (a mother refers to the comfort of having all professionals in the same place) or embrace both types of services (mental health and disability) in contexts of extreme social vulnerability. “Why not both?” asks a mother in Costa Andrada’s ethnography of autism services in Rio de Janeiro (Costa Andrada 2017, 124). They don’t seem to worry too much about whether autism is a mental disorder, a neurobiological disease or an intellectual disability. Etiologic conceptions and public health services are mobilized according to their specific needs.

Parents also exhibit a pragmatic attitude when they ask CAPSi professionals for medical reports and diagnosis in order to get the disability compensation to which they are entitled under the new Autism Law. “I think you have to be careful, yes. You have to do something else before you give the diagnosis, but I also think the team takes too long,” declares a CAPSi professional interviewed by Souza Lima (2017, 94). And he adds:

parents talked a lot about it: “I understand that you do not want to label, but the world requires the labeling. For you to enter a school you need an ICD 6 diagnosis. If you do not take the ICD, the school will not accept it.” So, well, they need it. You cannot be there for a year and keep saying “we do not want to label your child.” Okay, you have to be careful, but you have to understand that the school is asking for such things. (ibid.)

We see here that the acceptance of labels with pragmatic ends does not involve any epistemological, ontological, and/or etiological commitment to the ‘true’ nature of autism. Professionals in Brazil would be well served to keep this in mind, recognizing that medical reports alongside an autism diagnosis are a parent’s right (not to mention that most of the parents live in conditions of extreme social vulnerability, frequently residing far away from the CAPSi and with no or very little money for public transportation). The recent ‘Autism Law,’ a source of so much division in Brazilian autism communities, could be productively seen in that pragmatic spirit as well. The second article of the law determines that “the person with an autism spectrum disorder is considered as a person with disability for all legal purposes [emphasis added]” (Brasil 2012). To be precise, what it is essential in the law is that ASD is considered a disability, rather than a mental disorder, “for all legal purposes.” Again, it is not about an ontological or epistemological commitment to autism’s real nature (in this case, a disability), but a pragmatic understanding of the condition as disability, as a way to “pursue the right to health through alternative channels. […] adopting an increasingly global discourse of disability rights to marshal new resources for care” (Lima et al., in this volume).

CAPSi professionals could benefit if they adopt this pragmatic attitude as well. At times they do, as when they arrange activities and groups to fit children’s profiles of ability and developmental levels. Actually, some professionals welcome the notion of “disability for legal purposes” to get social and educational inclusion among other benefits, as focus groups with CAPSi professionals in Rio de Janeiro illustrate (Souza Lima 2017). However, ontological stances run deep, sometimes contributing to the obduracy of conflicts even between groups committed to an integrative approach. For example, as a recent ethnography with mental health professionals at CAPSis in Rio de Janeiro evinces, even professionals who are not psychoanalysts draw on psychoanalytic terms to describe their work. Or, even more bluntly, some professionals criticize the psychoanalytic discourse that blame the parents, while at the same time they largely draw on that discourse to interpret clinical cases (Feldman 2017). Psychoanalytic approaches thus continue to be extremely prevalent even in settings and among practitioners committed to eclecticism and integration.

In the case of the United States there is at first sight a clash between, on the one hand, autism advocacy professionals which advance a ‘militarist’ and pro-cure rhetoric and a cultural logic of war together with claims for biomedical interventions, frequently resulting in acts of violence and discrimination against autistic people; and on the other hand, neurodiversity activists opposing genetic and genomic research and biomedical treatments for autism, claiming instead the acceptance and accommodation of autistic individuals (McGuire 2016). However, when we move beyond that polarization (‘for’ or ‘against’ autism), we begin to see nuances, chiaroscuros and pragmatic negotiations and integrations that challenge and transcend those divides and tensions. In fact, neither all parents oppose self-advocacy movements, nor do all autistic adults take stances associated with the neurodiversity movement. Some activist parents support neurodiversity and run autism acceptance projects, such as the ASPIE school in New York mentioned in Lima et al. in this volume. Conversely, some self-advocates display a pragmatic attitude toward medical interventions that does not fit neatly within the neurodiversity paradigm. The latter sometimes find it difficult to combine their identities as autistics within the autistic communities, and their identities within the neurotypical world, and this tension can become an important source of anxiety and suffering (Bagatell 2007). In addition, some autistic adults do want to be cured. Sue Rubin, a low-functioning autistic and subject of the documentary Autism is a World, claims that whereas high-functioning autistics tend to be against a cure, low-functioning autistics generally hold the opposite position. “As a person with low-functioning autism that is still really awash in autism, I actually am aligned with the cure group,” she states, and “the thought of a gold pot of a potion with a cure really would be wonderful” (Rubin 2005; Ortega 2009). Unfortunately, this nuanced landscape is effaced through rhetoric emerging from the neurodiversity movement that tends to homogenize neurodiverse brains and minimize their differences so as to support their claims for the existence of a brain-based autistic identity. Thus, the ‘autistic brain’ is displayed as ontologically homogeneous and radically different from the also homogeneous NT (neurotypical) brain (Ortega 2013).

Rather than digging into the rhetoric of war and oppositions, it is more productive to investigate carefully the multiple ways different actors engage with autism according to “the position from which they stand and the types of claims they seek to gain” (Singh 2016, 12). In the case of genetic/genomic autism research Jennifer Singh deconstructs genetics and citizenship as “fantasies” of, respectively, a single gene and a single subjectivity. Her insightful examination of the experiences of several adults living with autism evinces, as expected, that those adults displayed a much more ambivalent and less optimistic view on the potential uses of genomic science (which they consider of little value for people living with autism) than the biosocial communities formed by families that either lobbied, raised funds, or influenced research agendas or participated in genetic/genomic research. And yet, although they oppose the idea of erasing autism through genetic technologies, adults living with autism also displayed ambivalence regarding the value of genetic knowledge. A father said he would accept a genetic test if it would lead to the development of medication for the undesired symptoms of Asperger’s; and another individual living with Asperger thinks that the identification of a gene for the condition “would have an important role in explaining what made him a person” (Singh 2016, 168). Individuals living with autism do not have just one univocal view of autism genomic research and its implications; they display different attitudes regarding their personal experience, identity negotiations, and advocacy.

In Italy, as well as in Brazil and the United States, parents and professionals pragmatically negotiate ideas about autism for different political and clinical agendas, sometimes doing so in ways that complicate what on the surface look like entrenched ideological oppositions. Despite the shared rejection of psychogenic theories of autism as derived from poor parenting, parents accept some elements of psychodynamic theory associated with relational approaches. And, unlike Brazil, where psychoanalytic and behavioral approaches are opposed, there is in Italy a blending of cognitive and behavioral methodologies with relational approaches that incorporate psychodynamic theories. Additionally, the understanding of autism as both biological and relational, rooted in organic causes but also as a different way of being shared by parents and professionals, helps to transcend disputes between these stances. The comprehension of autism as a biological condition removes the blame from the parents while preserving the relational dimension. Moreover, the idea of autism as a different way of being does not only serve to substantiate the social model of disability and ideas of neurological difference or neurodiversity. It also boosts the call for autism-specific services and the medical model of disability (Cascio et al., in this volume).

4 Beyond the Organicism/Anti-organicism Divide

The local and historical context of the three countries examined in the two chapters, Italy, Brazil, and the United States, challenges the assumption that ideas of autism as social/relational or as organic/biological necessarily imply specific public policies and treatments according to each view. Those views are mobilized within different political and clinical agendas according to diverse sociopolitical contexts. The actors in these accounts display a pragmatic attitude regarding ontological and epistemological commitments. They mobilize different etiological and ontological positions according to their utility to pursue the right to health and citizenship.

In Italy and Brazil, autism associations advocate for an organicist view of autism (a brain or neurobiological disorder which is diagnostically specific) that radically opposes the anti-organicist and anti-diagnostic stances of their respective psychiatric reforms. Psychiatric reforms emerged as a radical critique to the organicist view; in the present day, organicist views are taken up with the same aim as PR’s original anti-organicist stance, that is, the social, political, and educational inclusion of individuals with autism. Despite the different views around autism (‘mental suffering ’ or ‘disability’) in Brazil, both professionals at CAPSi and parent associations advance a discourse of citizenship, albeit from opposite premises. While parents embrace an organicist view—autism as an identity marker—professionals reject identity politics, and champion an anti-organicist stance embodied in the notion of ‘citizens burdened by mental suffering.’ Still, both groups largely share basic assumptions of the social model of disability (Rios and Costa Andrada 2015).

Similarly, the idea of neurodiversity aligns with social constructionism and the social model of disability, while simultaneously presupposing real biological (and neurological) bodies, thus complicating the idea that social constructionist and biological understandings of autism are necessarily incompatible. Organicist views are widely shared by parents, scientists, professionals and self-advocates (neurodiversity activists) in the United States. Unlike autism organizations that claim that autism is a neurological disorder, however, neurodiversity advocates affirm instead that it is a neurological difference. Disorder or difference, the neurological ‘reality’ of autism remains unquestioned. Yet social meaning still matters; despite widely shared organicist stances, there is very little consensus in the US not only regarding treatments, resources allocation, and services organization, but also regarding the nature of the condition itself: whether autism is a terrible threat, an adversary to be fought or a natural human variation to be respected and even celebrated (McGuire 2016). Similarly, in Italy, the organicist view mobilized by autism associations does not correspond to the organicism of psychiatric institutionalization, but it is associated with the notion of ‘autism-as-difference,’ a different ‘way of life,’ or of being. Autism is organic or cerebral, and, simultaneously a different way of being, a different life-form. One may say that this constitutes an illustration of social constructionism substantiating a physicalist view, not just of mental disorders, but of personhood.

The Italian view of autism as cerebral and, at the same time, as a way of being alludes to the discourse of neurodiversity (although, as Cascio, Costa Andrada, and Bezerra Jr., observe in their chapter, this discourse is still very incipient in Italy). Neurodiversity self-advocates ’ appeal for a “neurological self-awareness” (Singer 1999) allows them to bypass the medical establishment, and provides a substitute to psychoanalytic explanations that are considered unhelpful and even dangerous (Nadesan 2005). One function of embracing the vocabulary of the brain, therefore, is to remove the stigmatizing weight of psychotherapeutic discourses on autism. Turning to the brain-based explanation as an alternative, however, does not lead to the adoption of the deficit model underlying the neurocognitive theories such as ‘mindblindness,’ ‘weak central coherence,’ or ‘executive dysfunction.’ Rather, many autistic self-advocates draw on these theories involving the brain (often imprecisely) to substantiate the notion of a natural difference instead of an evidence for pathology. These individuals embrace the neurobiological explanations of autism, but separate this from the concept of disease, instead associating the neuroscientific basis with a celebrated identity (Ortega 2009).

Interestingly, the case of the autistic self-advocates also challenges the notion that a neuroscientific basis for self-understanding—in this situation, even a brain-based theory that defines individuals as a- or un-social—is necessarily associated with a kind of identity that is alienating or individualizing. Rather, the very acceptance of the neurobiologization of autism is among this group of people the basis for a form of social community of advocates who participate in meetings, discussions, and political formations with the common goal of resisting pathologization. This suggests an alternative to the frequently voiced assumption that neuroscientific explanations go hand in hand with atomized or isolated ways of being. However, it is worth asking if, even though seeing oneself as a “cerebral subject” (Vidal and Ortega 2017) bolsters one’s sense of identity and helps erase the social stigma often associated with mental pathology, whether, on the other hand, it somewhat solipsistically narrows the notion of what it is to be a person (Ortega and Choudhury 2011).

Similarly, in Italy ideas about autism as fundamentally organic or as fundamentally social/relational get mobilized differently according to the particular social and political contexts, and get evoked to substantiate multiple types of claims. As in the case of neurodiversity activists in the United States, organicity and sociality are not opposed. The pragmatic integration of sociality and organicity in the same view of autism transcends the dichotomies and polarizations that opposed Italian parents and professionals. They all favor a biological etiology for autism that does not result in reductionist or solipsistic forms of personhood. The biologization or cerebralization of the condition is instead associated to a view of autism as a ‘way of being,’ a “state of being or functioning, an aspect of the human condition, a different perception of the world around the person, and even another culture” (Cascio et al., in this volume).

5 Conclusion

Chapters 2 and 3 offer illustrations of the ways scientific ideas about autism are differently evoked in the three countries for different political and clinical ends. It is precisely the local and historical context and the everyday practice of professionals, families, and individuals living with the condition that render those ideas meaningful. They are not true or false, harmful or helpful in themselves, but are pragmatically negotiated and integrated by clinicians and other mental health professionals, parent associations, and self-advocates in their struggle for better treatments, social and educational inclusion, and other rights. Taking an empirically, ethnographically grounded, and historically informed approach, the two chapters help to understand why the same views on etiology, treatment, service organization, and even personhood have contradictory ends and are rendered harmful or helpful in a given social context. And vice versa, opposing views on etiology, treatment and service organizations, and public policies may underlie the same practical ends. Such an approach offers the potential to move beyond dichotomies and polarizations, which may seem definitive from a distance but which are not so definite when examined through the everyday life and practice of the individuals who are most immediately affected by autism. In addressing the ways in which international discourses get taken up for pragmatic purposes in particular social, political, and historical contexts, these pieces also transcend presupposed divisions between the global and the local. In doing so, these pieces open up possibilities for reconsidering some of the most contested issues in global mental health.

Notes

  1. 1.

    Terms such as Global Burden of Disease (GBD) or disability-adjusted life year (DALY), introduced by WHO in the 1990s and still in use, have undergone harsh criticism from a range of disciplines, from economics, anthropology to global health and disability studies. From an economic point of view, DALYs and GBD would fail to account for the differentials in resource availability. Given that GBD and DALYs are based in measurements from wealthy countries, the differential existing between these populations and those of developing countries measures both burden of disease and underdevelopment. The stronger criticism is advanced by disability scholars, who argue that those metrics devalue the life of disabled individuals and claim that their life should be valued equal to those without disabilities (Anand and Hanson 1997; Becker et al. 2013; Parks 2014; Wikler 2010).

  2. 2.

    I am grateful to the organizers of this volume, Elizabeth Fein and Clarice Rios for the insightful comments on the previous version of this chapter.

  3. 3.

    Psychiatrists, psychologists and neuroscientists primarily describe autism as a neurobiological disorder. Within this tradition there have been a number of cognitive theories proposed since the late 1980s, such as weak central coherence (Frith and Happé 1994), executive dysfunction (Ozonoff et al. 1991), a theory of ‘mindblindness’ (Baron-Cohen 1995) and a neurophysiological theory of mirror neuron dysfunction (Williams et al. 2001). Lord and Jones note that while there has been great hope for both structural and functional neuroimaging findings, “these approaches seldom provide data on an individual level, do not yet have well-accepted standards or replicability across time or site […] and have rarely addressed questions of specificity of findings to ASD” (2012, 491). Neither is there consensus about the methodology to be used in clinical interventions (Feinberg and Vacca 2000; Newschaffer and Curran 2003). In other words, and despite considerable amounts of research, there is still no convincing, well-replicated brain-based autism biomarker with clinical utility (Anderson 2015; Singh 2016; Walsh et al. 2011). However, as Chloe Silverman notes, “although researchers have had trouble finding localized structural changes, autism has retained its identity as a genetic disorder of the brain” (2012, 155). Furthermore, despite the lack of consensus and difficulty in finding brain-based explanations that fully account for autism, the research continues to look for them (O’Dell et al. 2016; Singh 2016).

  4. 4.

    Although autism is considered a spectrum, some self-activists reject the distinction between ‘low’ and ‘high-functioning’ autism, and consider differences across autistic populations asvariations of degree not due to fundamental “underlying neurological differences” (Nadesan 2005, 208–209).

  5. 5.

    Focus groups with CAPSi professionals in Rio de Janeiro evinced that the majority of professionals did not know the treatments offered at the specialized centers for autistic individuals associated to the Office of Health Care of People with Disabilities (Souza Lima 2017).

  6. 6.

    ICD refers to WHO’s International Classification of Diseases which is currently in its tenth edition, ICD-10.