From the literature, we understand that Autism Spectrum Disorder (ASD) affects many people not just in the United States, but across the globe (Elsabbagh et al. 2012); however, the majority of ASD studies come from the west. We also know that more research leads to better policies and practices; thus, there is a dire need for conducting research in the “other parts” of the world. As a doctoral student in special education and a LEND trainee, my primary research focuses on training and coaching parents of children with ASD in response to the low-level of resources in many low-resource settings (LRS), particularly developing countries around the world. Characteristics of these LRS include: (a) classification of low- to middle-income countries; (b) low level of availability of services with evidence base; (c) evidence of stigmatization of disabilities in the country; (d) parents' high levels of burden, including financial burdens for treatment; and (e) limited efforts of dissemination of treatment in families’ native languages (see Lee & Meadan, 2020).
It has been a challenging, yet exciting journey to have conducted ASD-related research in these LRS. My most recent experience in an LRS was in Ulaanbaatar, Mongolia, where I conducted a qualitative study with 30 caregivers of children with ASD and 15 professionals. The purpose of the study was to gain an understanding of the perceptions of these stakeholders, what they perceive as barriers, needs, and strategies to overcome some of the challenges associated with raising, educating, or treating a child with ASD in an LRS. Most parents reported severe, aggravated hardships related to raising their children with ASD, in terms of financial, emotional, and systemic barriers. They reported experiencing social isolation and rejection due to stigma of developmental disability that stems from cultural and religious reasons. Various professionals, including doctors, professors of special education, both general and special education teachers, and international development agency workers shared similar stories – the hardships, barriers, and needs.
Although many stakeholders reported that there was a dire need to address the low-level of resources, no one seemed to have an answer for this huge problem. It became clear to me that we must tackle the issue of autism treatment in LRS in the same fashion as we do with many other global issues, such as famine, poverty, resettlement. We must tackle these issues with research and practice across different levels. For example, medical professionals may engage in making diagnosis of ASD and other neurodevelopmental disabilities accessible for people who live in LRS by translating and validating the diagnostic and assessment materials in different languages and cultures. Simultaneously, there should be efforts to train and coach local mental health workers so that they can carry out the diagnostics with fidelity. Similarly, education and therapeutic professionals may propose to translate and validate evidence-based practices in that particular culture and language.
For example, Rahman et al., (2016) conducted a study in two different sites of India and Pakistan with an intervention model (parent-mediated intervention for children with ASD) that was already validated in England (Green et al., 2010). They found that the children in intervention group in both sites improved their communication. Moreover, their findings indicated that interventions that were already developed and validated in a higher-income country can generalize onto other LRS with different cultural and linguistic situations. Their study, among others, demonstrates that there is no need to reinvent the wheel, just adapt the wheels to fit the individual situations.
