Katie Chung (Author) and Alice Xu (Mentor)

What is ASD and what is the significance of this condition?

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication and the presence of restricted interests and repetitive behaviors (National Library of Medicine, 2020). Research indicates that ASD is influenced by both genetic and environmental factors, which affect the brain’s development (NLM, 2020). The DSM-5 criteria for ASD includes two main sub-groups: a) persistent deficits in social communication and social interaction across multiple contexts, and b) restricted, repetitive patterns of behavior, interests, or activities (NLM, 2020). This also includes hyper or hypoactivity to sensory input or unusual interest in sensory aspects of the environment (NLM, 2020). The prevalence of ASD in the United States has more than doubled from 2000 to 2010, with millions of individuals being affected worldwide (NLM, 2020). Additionally, individuals on the spectrum might face challenges in social settings and employment, making ASD a significant condition that can affect an individual throughout their lifetime (Solomon 2020). 

Cross-cultural differences influence the early diagnosis and treatment of ASD

Because ASD is a lifelong condition with rising prevalence, early diagnosis and intervention can be crucial in addressing developmental delays and enhancing social, communicative, and adaptive skills (NLM, 2020). However, early diagnosis of ASD is hard to achieve in certain populations due to cross-cultural differences. These differences refer to variations in beliefs and behaviors across different cultural groups. Previous research in the United States has indicated that non-white children typically experience delayed diagnosis by 1-2 years compared to white children (Wiggins et al., 2019). Minoritized youth also experience delays in diagnosis due to language barriers and cultural stigma (Pham and Charles, 2023). These results indicate that cultural differences may influence reporting of ASD symptoms. 

In addition to these disparities in diagnosis, there is a wide variety of treatment choices across cultures. Behavioral, cognitive, pharmaceutical, vitamin, and diet therapies are a few examples of intervention options that stem from the meaning parents attach to their children’s symptoms of ASD (Mandell et al., 2005). In scenarios where families believe that autism is associated with sleep issues, they may prescribe their children melatonin—whereas families who believe autism is a chronic condition may make the decision to take their child to behavioral therapy (Mandell et al., 2005). Ultimately, different beliefs about the cause of and effects of ASD result in different treatment choices.

Why do we have those differences?

Explanations given by the public for ASD reflect aspects of culture. A study conducted in China found that participants were much more likely to attribute parenting as a cause for ASD compared to genetic factors (Qi et al., 2015). Lay beliefs such as this one can impact individuals’ willingness to seek diagnosis and intervention—the potential shame that might come with it, especially if the cause is attributed to environmental factors rather than heritability (Bernier et al., 2010).

Cross-cultural gaps are further perpetuated by the fact that ASD research primarily occurs in Western high-income countries, which don’t account for differences across cultures in the expression, recognition, interpretation, and reporting of autism symptoms (de Leeuw et al., 2020). While ASD occurs across different cultures, the manifestation of symptoms may vary depending on norms or cultural importance. For example, caregivers in Ethiopia indicated that greeting others (which holds social significance) is a strength of their autistic children, which might seem different from how many Americans describe symptoms of their autistic children (de Leeuw et al., 2020). Additionally, symptoms such as lack of eye contact, which is described in DSM-5 as a potential sign of ASD, are not necessarily a telltale in many other cultures—including some Asian and African cultures, where eye contact with authorities is seen as shameful and disrespectful.

Beyond recognition and diagnosis, treatment services for ASD differ across races and ethnic backgrounds, with decreased access for Latino and African American children who are less likely to use services of professionals (Bernier et al., 2010). In addition, typically offered interventions such as behavior treatments that are focused on fostering independence can clash with cultures that emphasize community and collectivist ideals (Bernier et al., 2010). 

On top of these individual decisions when it comes to intervention, there are gaps in national or state-funded treatment options which can affect the quality of services and thus the outcome for a child with ASD (Bernier et al., 2010). These differences exist as a function of cultural views and both the importance that is placed on ASD itself and the treatment of it.

Lastly, it’s important to consider how ASD has been historically and currently defined. While the DSM-5 has been through many reviews and improvements from previous versions, the high specificity of the definition gave way to lower sensitivity, leading to many individuals being excluded from diagnostic categories despite the need for intervention (Volkmar et. al, 2013). This potential lack of eligibility for many stems from how ASD is defined by the United States, which might call for a different translation of symptoms for those from different cultures with varying core beliefs. Individuals who don’t fit the criteria in DSM-5 may struggle to be diagnosed, which might limit the treatment they receive. 

How should we deal with this issue?

Considering aspects such as religion, culture, migrant status, and communication/language is essential for acknowledging the cross-cultural differences in diagnosis (Barrio et al., 2018). These disparities can be combated by furthering research towards a more diverse population, and acknowledging the potential differences in real-life scenarios that can occur as a result of limited research. 

Furthermore, the sociocultural environment of an individual can heavily impact family dynamics, which can lead to clashes in cultural beliefs and recommended interventions (Welterlin et al., 2007). In other words, intervention should be tailored to meet the needs of a family in order for it to be most effective. From the practitioner side, it’s important to consider an individual’s background when working with a client and be aware of the cultural differences that can heavily impact perception of ASD and effectiveness of intervention.

What can we take away from this?

Ultimately, ASD is prevalent across cultures but may present itself differently depending on social norms, cultural beliefs, and stigma. This has implications for diagnosis and intervention, which can be crucial for individuals with ASD. Furthermore, the fact that research on ASD is primarily conducted in Western countries leads to gaps that are not yet fully understood. Being aware of the cultural inclusivity necessary to create a more recognizable definition of ASD is a crucial step in developing appropriate intervention programs. By raising awareness, these disparities can be acknowledged and addressed.

References

Barrio, B. L., Hsiao, Y.-J., Prishker, N., & Terry, C. (2018). The Impact of Culture on Parental Perceptions about Autism Spectrum Disorders: Striving for Culturally Competent Practices. Multicultural Learning and Teaching, 14(1). https://doi.org/10.1515/mlt-2016-0010

Bernier, R., Mao, A., & Yen, J. (2010). Psychopathology, Families, and Culture: Autism. Child and Adolescent Psychiatric Clinics of North America, 19(4), 855–867. https://doi.org/10.1016/j.chc.2010.07.005 

de Leeuw, A., Happé, F., & Hoekstra, R. A. (2020). A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe. Autism Research, 13(7). https://doi.org/10.1002/aur.2276

Hodges, H., Fealko, C., & Soares, N. (2020). Autism spectrum disorder: Definition, epidemiology, causes, and clinical evaluation. Translational Pediatrics, 9(1), 55–65. https://doi.org/10.21037/tp.2019.09.09

Mandell, D. S., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 110–115. https://doi.org/10.1002/mrdd.20061

Pham, A. V., & Charles, L. C. (2023). Racial disparities in Autism diagnosis, assessment, and intervention among minoritized youth: Sociocultural issues, factors, and context. Current Psychiatry Reports, 25. https://doi.org/10.1007/s11920-023-01417-9

Solomon, C. (2020). Autism and employment: Implications for employers and adults with ASD. Journal of Autism and Developmental Disorders, 50(11). https://doi.org/10.1007/s10803-020-04537-w

Volkmar, F. R., & Reichow, B. (2013). Autism in DSM-5: progress and challenges. Molecular Autism, 4(1), 13. https://doi.org/10.1186/2040-2392-4-13

‌Welterlin, A., & LaRue, R. H. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22(7), 747–760. https://doi.org/10.1080/09687590701659600

Wiggins, L. D., Durkin, M., Esler, A., Lee, L., Zahorodny, W., Rice, C., Yeargin‐Allsopp, M., Dowling, N. F., Hall‐Lande, J., Morrier, M. J., Christensen, D., Shenouda, J., & Baio, J. (2019). Disparities in Documented Diagnoses of Autism Spectrum Disorder Based on Demographic, Individual, and Service Factors. Autism Research, 13(3), 464–473. https://doi.org/10.1002/aur.2255