Abstract
Over the past three decades, there has been a sea change in awareness of autism and related conditions. This awareness has been unfolding in a way that has broadened our recognition of people with autism spectrum disorder (ASD) and less impairing broader characteristics associated with autism across the life span. This awareness has also deepened our scientific inquiry into the complex biology, expression, course, and interventions associated with autism among individuals and in the population. Most of our documented knowledge of prevalence, phenotype, etiology, and interventions has come from high-income, industrialized nations in North America, Europe, Scandinavia, and Asia (Baxter et al., 2015; Rice et al., 2012); however, our geographic and cultural awareness of autism is also expanding. This Special Issue on Global Autism Research in Autism: The International Journal of Research and Practice aims to highlight some of the work happening around the world in autism research and expand the emphasis on global scientific inquiry of autism.
A focus on the global autism community requires that we address the geographic, socioeconomic, and cultural variations in autism (Durkin et al., 2015). Typically, our understanding of any issue, concept, or condition starts with the most common prototype with clear, defining characteristics and then expands outwards. For autism, our focus and awareness has begun with children displaying more clear impairment associated with limited language, little interaction with others, and observable repetitive or unusual behaviors, often accompanied with intellectual disability (ID) (American Psychiatric Association, 1980; Rice et al., 2012). As our awareness has expanded, so has our recognition of the spectrum of autism conditions from the earliest signs among infants and toddlers up through adulthood. We have deepened our understanding of the core communication features to include challenges in socially responsive, complex verbal and nonverbal ways of communicating, and social interaction to go beyond awareness and interest in other people, but also insight into different social relationships (American Psychiatric Association, 2013). We have expanded from recognizing observable repetitive behaviors like hand flapping to consider intense or arcane areas of interest as part of the behavioral repertoire associated with autism. A key primary question in examining autism globally must first address how autism is being identified—based on what standards?, among whom?, how?, and with what consequences?
In order to study a condition, we must identify it among people in the community, and there must be ways to respond to the newly noticed needs of the people involved. Currently, autism research in low- and middle-income countries (LMICs) mainly focuses on identification and within-community supports rather than basic science (International Society for Autism Research (INSAR), 2016). For example, adoption and cultural adaptation on existing screening and diagnostic tools and behavioral interventions were developed and evaluated from high-income countries (HICs). In LMICs, a primary focus has been on the importance of applied knowledge and tools to use in settings that may not have the luxury of highly controlled, well-resourced laboratory or exploratory research. The typical progression of “lab to life” is often impractical and treatment studies are challenging because they are often conducted in real-life settings with competing resource needs. With the high cost of copy-righted ASD screening and diagnostic materials and expertise needed, lack of clinical and research infrastructure, other primary health care priorities (e.g. infectious diseases), and shortage of trained research and clinical professionals (Durkin et al., 2015), it has been enormously challenging to carry out ASD studies using “gold-standard” that have been implemented in ASD research in HICs. Within any field of emerging inquiry, early efforts may be “modest in size and technical sophistication” (Mandell and Howlin, 2016). It is important to understand that expanding global research must reflect a recognition of the importance of capacity-building, balancing contextual needs, and preserving ethical principles and quality standards of research that cannot be divorced from impact.
In this Special Issue, we focus on some key global research efforts in early ASD identification and interventions. This issue includes a series of articles organized broadly around identification, instrument adaptation and use, and intervention development in diverse communities around the globe. The idea is that a progressive process of early recognition and confirmation of autism-associated developmental challenges as an important precursor to providing appropriate interventions and support to improve outcomes and quality of life. The way we screen and diagnose autism is dependent on these definitions and the tools and methods subsequently used for screening and confirmation of need or diagnosis. At the most basic level, the core definition of autism and related conditions has undergone a major conceptual shift in HICs from more moderately to severely impacted individuals with autistic disorder and likely with ID, to a broader spectrum of pervasive developmental disorders (American Psychiatric Association, 1980; World Health Organization, 1978). In the years that followed, inclusion of Asperger’s disorder expanded the spectrum of subtypes (American Psychiatric Association, 1994; World Health Organization, 1989), and recently, consolidation of the broad concept of ASD (American Psychiatric Association, 2013) into a single diagnostic framework with the importance of describing overlaying clinical specifiers (language functioning, intellectual ability, etc.). Today’s population of people with ASD identified in HICs are less likely to have co-occurring ID, reflecting a different population than was studied in the past (Baxter et al., 2015; Christensen et al., 2016).
In the effort to advance global autism research, it is important to understand who is represented as having “autism” in these studies. In addition, research on etiology will require more precise characterization of the phenotypic characteristics that can be identified and measured in culturally meaningful ways. Ideally, early screening and diagnosis would also include evaluation of specific developmental and learning challenges and strengths. This knowledge would lead to individualized supports and interventions that promote positive skill development and reduce or replace challenging patterns and behaviors. Key research challenges include developing and evaluating low-to-no-cost screening and diagnostic tools that take cultural considerations into account, but preserve identification of core ASD features.
The reports included in this issue detail specific aspects of autism screening including a characterization of early signs of ASD in an isiZulu-speaking community in South Africa (Chambers et al.), a review of autism screening efforts in LMICs (Stewart et al.), and variation in reporting autism symptoms on parent-report screeners in Taiwan (Tsai et al.). Together, these studies highlight the importance of considering context, culture, characteristics, location, and purpose of screening. Because the diagnosis of autism relies on expert clinical judgment and the observation of developmental characteristics, the emphasis in HICs has been on developing and utilizing well-validated “gold-standard” tools to improve the validity and reliability of the autism diagnosis. Major challenges in adopting these diagnostic tools in LMICs are the cost and expertise required for use. The studies included in this issue on diagnosis detail efforts at linguistic and cultural translation (Smith et al.) and use (Samms-Vaughan et al.) of gold-standard instruments in diverse communities. Another study characterizes the community-based diagnostic patterns of children in Venezuela (Montiel-Nava) highlighting diagnostic practices in one community clinic.
While identification is essential for autism research, it is also essential that we have tools and techniques to help the individuals, families, and communities affected by autism. Key research considerations in LMICs include adapting or developing culturally appropriate and effective interventions that are accessible. This issue includes broader health services analyses of the interventions available and accessed for children with autism in very different areas of the world: rural areas of Taiwan (Chu et al.) and Saudi Arabia (Alnemary et al.). At a more granular level, procedures and lessons learned in adapting interventions developed in one setting to another are included. Begiaolo and colleagues report using technology and video modeling for applied behavior analysis (ABA) intervention with Brazilian parents. Blake et al. detail lessons learned in developing, adapting, and implementing parent-mediated intervention in rural Bangladesh. Finally, Ratto et al. share insights into engaging culturally diverse families in intervention research.
As researchers and clinicians, if we are going to expand the reach of evidence-based interventions to individuals with autism in diverse communities around the globe, we will need to invest in ways to thoughtfully and sensitively build local capacity and to find ways to improve sustainability. Continued dissemination of the best research to date is important for ongoing development of the global research community. Building local in-country networks that promote collaboration is also key to a true expansion of global autism research. Ultimately, we need research to inform tools and techniques that reflect the diverse communities in which people with autism live and to help people in their real lives.