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It is thought that a form of autism affects close to 1% of the world's population. This means that a substantial proportion of the world's children who are affected by autism also face issues regarding survival and physical health. Most live in less developed countries, where service provision varies from grossly inadequate to nonexistent. Poverty, social exclusion, abuse, and neglect exasperate the negative impact of the condition across the life span, despite the fact that these factors are preventable. Against this reality, where does the contemporary autism research agenda fit in? Most research on autism is concerned with scientific discovery, through understanding the characteristics and causal pathways to the condition. In contrast, research within the global context has often focused on enhancing health system responses in low- and middle-income for a wide range of neurodevelopmental conditions, including autism. In this Special Issue of Autism Research, we assemble theoretical frameworks, experimental findings, and provocative ideas from a common ground,1 where the scientific discovery agenda coexists and overlaps with capacity building to support some of the world's most under-resourced settings. Taken together, these approaches offer a new genre of global research promising to enrich the contemporary autism research agenda.

A major theme emerging from the common ground is the need to harness the natural synergy between advancing basic research while simultaneously building capacity and improving evidence-based services.

If discovery becomes overly focused on strictly defined participant pools, representing only a small percentage of neurodevelopmental conditions, improving delivery based on what is discovered will be less likely. Similarly, if the immediate goals of capacity building and service delivery overshadow the need to understand underlying causes and isolate reliable diagnostic and prognostic markers, limited progress will be made in improving delivery in the long run. Instead, in a global research, goals of delivery and discovery need to be granted equal priority. Table 1 presents emerging research areas where these two goals may be complementary, and these are considered next.

Table 1. Complementary Goals of Scientific Discovery and Supporting Evidence-Based Service Delivery in Global Autism ResearchThumbnail image of

Enabling Research into Causal Genetic and Environmental Pathways in Low- and Middle-Income Countries

  1. Top of page
  2. Enabling Research into Causal Genetic and Environmental Pathways in Low- and Middle-Income Countries
  3. Improving Efficiency of Diagnosis
  4. Validation of Evidence-Based Interventions
  5. Informing Priorities through Prevalence Studies
  6. A Call for Action
  7. Acknowledgments

Global autism research provides a powerful means by which the causal pathways underlying autism may be modeled. Where traditionally research participants have had predominantly European ancestry, global research provides access to a wider genetic pool, offering better opportunities for generalization and gene linkage. Varying environmental and acquired risk factors around the globe provide ideal “natural experiments” to trace their contribution to the condition. In the current collection, Khan et al. highlight that identifying root cause and biomarkers is not only a priority for autism research but is one of the grand challenges in global mental health. The extent to which such research can contribute toward building local capacity or improving services in the communities in which it is carried out, however, is less clear. Indeed, in some regions, the way in which genetic research in particular has been carried out has raised concerns over issues of informed consent and the transfer of biological material outside its country of origin. The way in which such research is conducted should not only take into account the impact it has on the community, and respect local ethics, but should be equally driven by local priorities and capacity building. In the current collection, Grinker et al. review models and offer valuable experiences in engaging communities in research. Divan et al. offer another qualitative approach to identifying challenges and unmet needs among those affected by autism in a community in Goa, India.

Improving Efficiency of Diagnosis

  1. Top of page
  2. Enabling Research into Causal Genetic and Environmental Pathways in Low- and Middle-Income Countries
  3. Improving Efficiency of Diagnosis
  4. Validation of Evidence-Based Interventions
  5. Informing Priorities through Prevalence Studies
  6. A Call for Action
  7. Acknowledgments

A key objective of the emerging global research agenda is to validate conventional screening and diagnostic tools for use within a global context. Validation of such instruments will help reduce heterogeneity in clinical judgment and allow comparability across studies. In the current collection Fombonne et al. offers an example of validation of a screening tool in Mexico, and demonstrates excellent psychometric properties comparable to other samples from North America. In a few communities around the globe, “gold-standard” methods have supported community-based screening and comprehensive case evaluation, offering the basis for targeted intervention, educational provision, and financial support. Khan et al. and Wallace et al. highlight that despite these advantages, the validation of such methods globally has been challenging due to their misfit with local cultural and capacity considerations. Moreover, priorities in the area of global mental health require such tools to be freely available for use by general health workers and to encompass, in addition to autism, a wider range of developmental conditions.

Validation of affordable and efficient screening and diagnostic methods will not only be beneficial for capacity building and improving services across the globe but has also been a rising priority in the contemporary research agenda. Efficiency in diagnosis is a growing need for large-scale genetic and epidemiological studies where comprehensive evaluation can become very costly. More importantly, autism is no longer viewed as a narrowly defined categorical disorder with clear boundaries. Instead, researchers are still identifying and validating the phenotypic dimensions defining the condition. A global approach can support validation of diagnostic criteria. Because neurobiolgical underpinning of autism are likely to be common across humans, the “true” nature of autism will eventually become clear once we look across diverse genetic pools, environments, or cultural traditions. As such, the goals of scientific discovery and the demand for affordable and efficient diagnostic strategies in the community are more synergetic than commonly understood.

Validation of Evidence-Based Interventions

  1. Top of page
  2. Enabling Research into Causal Genetic and Environmental Pathways in Low- and Middle-Income Countries
  3. Improving Efficiency of Diagnosis
  4. Validation of Evidence-Based Interventions
  5. Informing Priorities through Prevalence Studies
  6. A Call for Action
  7. Acknowledgments

Global research is likely to have a positive impact in the area of intervention, where considerations of efficiency and cost-effectiveness are common, especially in countries with national health-care systems. Existing evidence-based intervention strategies provide the basis for developing culturally appropriate and contextually relevant interventions for use by families, teachers, and traditional health systems, in low and middle-income countries. In the current collection, Khan et al. suggest that such models already exist in a small scale in low- and middle-income countries. This research can simultaneously contribute toward understanding the potential impact of varying social or economic factors on autism.

Informing Priorities through Prevalence Studies

  1. Top of page
  2. Enabling Research into Causal Genetic and Environmental Pathways in Low- and Middle-Income Countries
  3. Improving Efficiency of Diagnosis
  4. Validation of Evidence-Based Interventions
  5. Informing Priorities through Prevalence Studies
  6. A Call for Action
  7. Acknowledgments

Because significant costs are associated with prevalence studies, some have questioned whether country-specific estimates should be a priority, especially where resources are limited and other priorities include preventable life-threatening conditions. Such studies are useful, however, for assessing needs and priorities within communities. These themes are discussed in the systematic review by Elsabbagh et al. of the global prevalence of autism. This perspective highlights that epidemiological research often provides systematic information regarding the availability, quality, and accessibility of existing services, and as such can inform policy and practice. Such studies often also require the development of valid tools for systematic clinical characterization, which can indirectly lead to improvements in training, services, and general awareness, as well as facilitating future research.

A Call for Action

  1. Top of page
  2. Enabling Research into Causal Genetic and Environmental Pathways in Low- and Middle-Income Countries
  3. Improving Efficiency of Diagnosis
  4. Validation of Evidence-Based Interventions
  5. Informing Priorities through Prevalence Studies
  6. A Call for Action
  7. Acknowledgments

While the majority of autism research remains concentrated in a handful of wealthy countries, advances in our understanding of this neurobiological condition have no geographical boundaries. There is growing recognition that characterization of the genotypes, phenotypes, and risk factors in autism across diverse geographical settings can enhance our understanding of the disorder. Simultaneously, research can offer more by way of improving the lived experience of those affected by autism through (a) culturally appropriate, valid, and comparable diagnostic instruments, and (b) affordable care strategies for use by community health workers, applicable to a range of neurodevelopmental disabilities.

Implementing this emerging agenda relies on collaborative frameworks for promoting innovative research strategies while simultaneously building capacity in developing countries. Research could also make better use of technology to improve information accessibility, engaging families, community health workers, clinicians, and researchers across distant communities. Such partnerships, between a wide range of stakeholders, and built on mutual respect for each society's unique culture, needs, and priorities, will enable rapid progress. In view of the increased awareness of autism worldwide and the growing interest from a wide range of stakeholders, research in this relatively narrow field may be viewed as a potential vehicle for improvements in evidence and practice standards not only in autism, but more generally in child mental health.

Acknowledgments

  1. Top of page
  2. Enabling Research into Causal Genetic and Environmental Pathways in Low- and Middle-Income Countries
  3. Improving Efficiency of Diagnosis
  4. Validation of Evidence-Based Interventions
  5. Informing Priorities through Prevalence Studies
  6. A Call for Action
  7. Acknowledgments

I wish to sincerely thank Autism Research leadership and staff (Anthony Bailey, Colette Bean, and Andrea Modica) for their hard work and dedication in realizing this special collection. I am also grateful to Andy Shih, Geraldine Dawson, Michael Rosanoff, Vikram Patel, Eric Fombonne, Tony Charman, and Tony Bailey for valuable information and discussion and for sharing the vision of a common ground. I also wish to thank Kim Davies. I receive valuable financial support from the Wellcome Trust and NeuroDevNet.

  • Mayada Elsabbagh

  • Department of Psychiatry, McGill University, Montreal, Canada

  1. 1

    The “common ground” concept is borrowed from a number of literary and political thinkers to describe a theoretical space where different ideas and cultures meet, overlap, and cooperate.