In The Politics of Autism, I discuss international perspectives. Diagnosis depends on observation of behavior. There are multiple problems with this approach, including cultural differences.
Moreover, the definition of behavioral symptoms rests on Western – and specifically American – expectations about the behavior of children and adults. But what is “autistic” in this context may be “normal” in another. In rural South Africa, for instance, young children avoid direct eye contact with adults because their culture considers it disrespectful.At The Journal of Autism and Developmental Disorders, Nicole E. Rosen, Catherine Lord & Fred R. Volkmar have an article titled "The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond."
Cultural context is a crucial consideration in the diagnostic process, both in accurately assessing for ASD and in understanding the implications of a diagnosis (Freeth et al. 2014). While standardized instruments allow for reliable diagnoses of ASD across countries (Marlow et al. 2019) and diverse populations (Harrison et al. 2017), clinicians must conduct assessments and interpret results within the cultural framework of the individuals they assess. Within some Asian cultures, for example, index finger pointing to express interest is not a common overture, and thus an absence of this skill during an autism assessment may not be coded by a clinician as a behavioral symptom common to ASD (Zhang et al. 2006). Additionally, in South Africa, for example, some children are taught to avoid playing with amphibians and reptiles as safety precautions. Thus, when administering the Afrikaans ADOS or other versions of the ADOS to children who are uncomfortable playing with frogs (which happens in many places), clinicians may elect to use a toy car in place of the toy frog during the “functional and symbolic imitation task” as a culturally sensitive adaptation (Smith et al. 2017).
Similarly, as Freeth et al. (2014) note, issues such as regulation of eye contact and language differences across cultures might impact usual Western-oriented assessments. For example, in one study of Spanish-speaking families in the U.S. (Vanegas et al. 2016), potential issues were noted in the sensitivity and specificity of diagnostic instruments when parents and children experienced language discordance resulting in Spanish-speaking parents underreporting communication impairment in their English-speaking children. Issues relative to the use of screening instruments in various cultures and across multiple countries have also been noted (Dai et al. 2020; Havdahl et al. 2017; Khowaja et al. 2015; Kimple et al. 2014; Rea et al. 2019; Surén et al. 2019; Windham et al. 2014), and, together with the considerations in assessment, highlight the importance of the clinician’s interpretation of behaviors in the context of what would be socially appropriate relative to culture.
The cultural context in which an individual receives an ASD diagnosis is also important, as it may foster acceptance and access to services (common in the U.S.), or it may be associated with stigma for the individual and the family as a whole. In some African cultures, for example, individuals with ASD and their families are stigmatized because of the belief that ASD results from witchcraft (Gona et al. 2015). Furthermore, among cultures that stigmatize disabilities more generally, an ASD diagnosis in the family can also negatively affect the marriage prospects of siblings and the future of the family given the genetic liability (Divan et al. 2012). Across East Asia, the Middle East, and Western societies, a recent review suggested a strong negative impact of ASD stigma on some caregivers resulting in attempts to hide their circumstances (sometimes the child with ASD as well) to avoid rejection from the community (Papadopoulos et al. 2019). Taken together, while little variation in ASD prevalence between cultures has been reported (Elsabbagh et al. 2012), the above studies highlight the importance of navigating the diagnostic process through a cultural lens.
While a recent global burden study reported that 95% of all young children with developmental disabilities live in low and middle income countries (Olusanya et al. 2018), the majority remain undiagnosed (Sun et al. 2019). Furthermore, relatively little research originates from these countries, which results in their underrepresentation in the broader ASD literature (Franz et al. 2017). The low diagnostic rates in poor countries likely stem from the lack of dedicated infrastructure to assist people with ASD (Minhas et al. 2015; Tekola et al. 2016), difficulty obtaining referrals to meet with the limited number of specialists (de Vries 2016; Elsabbagh et al. 2012), and low levels of parental literacy that limit a parent’s ability to understand the disorder and to locate services (de Vries 2016; Samadi and McConkey 2011). Families are often forced to manage the care of an individual with ASD on their own, which often involves enlisting the help of extended family and community members (Divan et al. 2012). Among the lucky families who find an available and appropriate assessment center, the target children may be brought to the clinic by non-parent adults, which limits the quality and quantity of relevant developmental information that can be shared with the specialist. Thus, given the numerous barriers to assessment, the children who ultimately receive ASD diagnoses are often the children with the most significant impairments and complex phenotypic profiles (Kommu et al. 2017).