Contesting the Globalization of “Autism”

A research proposal to renegotiate ethnocentrism, ableism, and neuronormativity in GMH discourse and intervention

Introduction

Autism spectrum disorder has risen to prominence on the agendas of GMH organizations, with advocates for globalizing autism spectrum disorder calling for the development of public health interventions, medical education, and cross-cultural diagnostic tools to be implemented in LIC and MIC settings (de Vries, 2016; Durkin et al., 2015; Matos 2022; Munir et al., 2016; Rice & Lee, 2017; World Health Organization, 2013, Hoekstra et al. 2020). Within these GMH discourses, involving prominent international forums such as the WHO, the notion of autism as a neurobiological disorder has been reified as a concrete truth, despite the fact that the condition remains highly contested medically, epistemically, ontologically, and etiologically, with no replicable biomarkers of clinical utility (Anderson, 2015; Freedman & Honkasilta, 2017; Singh, 2016; Ortega et al. 2022). Though the ontological stability of the category is tenuous, autistic advocates and disability scholars emphasize that as a sense-making device, the category still has much to offer in terms of delivering support, empowerment, and relief (Stimpunks 2024). Yet the types of “supports” and “reliefs” vary in constitution depending on whether the sense-making category of autism is configured to make sense of difference in terms of deficit or diversity: with the former being historically affiliated with coercive treatment and dehumanization (Gary et al. 2021), and the latter being affiliated with accommodation, empowerment, and care (Stimpunks 2024).

Continually framing autism in terms of economic burden and social, communicative, and behavioral abnormality, the autism narrative of the WHO is decidedly that of deficit (Khan et al. 2012, Simpson 2023). Such positioning is even more evident by their longstanding partnership with Autism Speaks, a notorious organization routinely lambasted by autistic self-advocacy organizations for promoting ableist tropes, excluding autistic perspectives, endorsing traumatizing behavioral therapies, and peddling eugenist narratives that seek to “cure” autism (Friend 2021, Graner 2016). Together with Autism Speaks, the WHO has rolled out a Caregiver Skills Training program, which incorporates controversial behavioral therapy techniques, in multiple LIC contexts (ASAN 2025, World Health Organization 2025). For forcing children to alter their communicative and behavioral inclinations, or “mask” as it is referred to in neurodivergent circles, behavioral therapy has come under scrutiny for being coercive, traumatizing, and detrimental to autistic children’s development (ASAN 2025, Gary et al. 2021). Masking, a process in which autistic people try to modulate their behavioral and communicative inclinations to fit social norms, has been associated with worse mental and physical health outcomes (Stanborough 2021). Rather than interventions that attempt to “cure” autistic behavioral, communicative, and cognitive inclinations, autistic advocates have promoted a model of neurodiversity that accepts variance in communicative, behavioral, and cognitive styles, emphasizing health interventions that provide increased support, accessibility, and acceptance for autistic individuals (ASAN 2025).

Beyond criticisms of perpetuating ableist harm and neuronormativity through their programs, the WHO has also been criticized for their ethnocentric approach to delivering “health” and “relief” to disabled populations in LICs and MICs (Fairhead 2016, Krumeich 2001, Ingstad 1995, Ortega et al. 2022). Attempting to universalize a certain mode of sense-making in regard to neurodiversity, the WHO Caregiver Skills Training Programme neglects to consider the interior health logics of local populations and instead seeks to correct presumed parental ignorance by imparting Euro-American diagnostic categories, treatments, and childrearing behaviors (Matos 2022, Fairhead 2016, Westby et al. 2024, World Health Organization 2025). GMH discourse continually justifies these interventions, citing ignorance, stigma, and poor parenting in regard to neurodiverse children in these LIC and MIC settings (Matos 2022, 967). The implication being that local populations are devoid of interior health logics with which to construct and act upon caring for neurodiversity (Oretga et al. 2022, 3194). Rather than importing Euro-American biomedical categories under a paradigm of “education” and “correction,” anthropologists have suggested that public health interventions be developed alongside communities to ensure the intervention is in consonance with existing cultural logics and material concerns (Ortega et al. 2022, Fairhead 2016).

Research Questions

With calls for reform on grounds of redressing ableism, ethnocentrism, and neuronormativity, a research project exploring how “autism” becomes constructed, contested, and complicated on the site of a WHO CST intervention seems necessary. Situating myself in Nairobi, Kenya, a site of the WHO’s CST intervention, I would like to conduct an in-depth study of “autistic” reality, local conceptualizations of neurodiversity, and a longitudinal study of the WHO CST project (World Health Organization 2025). Guiding questions will focus on the lived experiences of those labeled as autistic and/or those experiencing themselves as neurodiverse within their local context:

• How is “autism” as a clinical sense-making device operationalized in practice by health care personnel and individuals classified as autistic, and their families? How are individuals classified as autistic and subject to these interventions experiencing them? How are their families experiencing them?

• Are there any community members who identify or are identified by others as experiencing behavioral, communicative, cognitive, or sensory needs that differ from the majority of individuals in their community? How are these differences understood and acted upon by these individuals, their families, and their fellow community members? What are the material needs and supports these individuals and their families articulate? What do they define as their primary sources of distress and relief?

Methodology

To capture an ethnographically rich picture that speaks to such questions, my methods will call for extended fieldwork and participant observation for two years in partnership with neurodiverse-affirming autistic child psychologists. The usage of research partners trained in autistic child psychology is to facilitate conversations with autistic children to understand their perspectives, given that they are the primary recipients of the CST intervention. Furthermore, it is significant to create an autistic research team as a part of a larger political project of epistemological reclamation in an autism research landscape that often marginalizes and speaks over autistic voices (ASAN 2025). 

Together we will conduct an in-depth study of how autism and neurodiversity are constructed, contested, engaged with, and experienced in a LIC context by local community members, neurodiverse peoples, and WHO personnel. Rather than evaluating “attitudes” and “beliefs” my methodology will focus on excavating how autism, neurodivergence, and disability are socially constructed through various practices, locales, and persons. This will involve participant observation at many levels: attending WHO CST training modules, observing consultations and diagnostic sessions, visiting households to observe how parents care for their neurodivergent classified children, and spending time with individuals regarded as neurodivergent either by their own accord or by community members. The reason for such a praxiographic approach is that hermeneutic explanations alone rarely divulge the messiness of how clinical realities are structured. In a locale where a multiplicity of health ontologies crash and converge, an approach focusing on attitude and belief could oversimplify local realities by focusing on differences, missing how disability is coordinated by a multiplicity of ontological engagements in practice. Though the purpose of these practice-oriented methods is to shift from an overemphasis on “belief” and “attitude,” our study will nevertheless tend to the discursive realm in tandem with practice: analyzing the concepts as presented by the WHO CST intervention as they appear in any circulated textual or audio-visual material. Further, we will tend to how the WHO CST constructs autism discursively through conducting semi-formal interviews with CST-trained health personnel, caregivers, and neurodivergent individuals who are the intended recipients of the intervention. Similarly, we will tend to how locally constructed notions of neurodivergence may appear through semi-formal interviews and conversations with neurodivergent individuals and their families, local health practitioners, and community members.

As relationships with community members build over time, we hope for the communicative pathways and trust to be built in a manner that allows us to implement a dialogical methodology. The dialogical method, as laid out by anthropologist Krumeich, is a process in which anthropologists present their cultural analysis of a particular health need within a community directly to community members (Krumeich 2001). Then these community members, in collaboration with health specialists, design interventions that align with the sociocultural climate. Given the fact that neurodivergent people are at risk of experiencing marginalization within their communities or even within their own families, we will attempt to directly prioritize neurodivergent voices in these dialogical approaches.  

Through studying how neurodivergence is constructed and experienced in Nairobi using practice-based and discursive methodologies and through using a dialogical approach to assess the needs and priorities of neurodivergent community members, we hope for our research to provide a foundation for health interventions that offer support to neurodivergent individuals and their families in consonance with local logics and material realities.

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