INFO 200 Blog #6: Global Cultures and Autism

There has been invigorated interest regarding the impacts of autism spectrum disorder (ASD) around the world, and rightfully so. It has been estimated that 1%-2% of the world’s population of children has autism. While 1%-2% might seem like an insignificant number at first glance, that equals approximately 52 million children globally (Hahler & Elsabbagh, 2015).

Much of the research I’ve been able to discover regarding the information seeking practices of parents of children with neurodevelopmental disorders, autism in particular, has come from high-income countries (HIC). Qualitative and quantitative information from low- to middle-income countries (LMIC) concerning autism itself is scarce (Hahler & Elsabbagh, 2015), let alone research about how parents go about finding information for their child with autism.

For parents of children with autism in LMIC, there are many issues that intersect, including unmet information needs of health professionals (Ekoja, 2017), culture, and information accessibility. Another factor to consider is the screening and diagnostic tools commonly used for diagnosing autism have been developed in HIC. Because of financial barriers and the need to account for cultural differences means that it is difficult for LMIC to utilize these tools (Hahler & Elsabbagh, 2015). This is important to note, because, for example, there is little to no statistical data regarding the number of occurrences of autism in South Africa (Malcolm-Smith, Hoogenhout, Ing, Thomas, & de Vries, 2013), and in Cyprus and Macedonia (Preece et al., 2017).

Health professionals in LMIC have barriers of their own that can affect the level of care they are able to provide the families that come to them for services. Often, they are not compensated adequately, which can lead to a lack of professional development. The ramifications include not being able to afford memberships in professional associations, updated professional literature or benefit from attending professional conferences (Ekoja, 2017). 

ASD occurs worldwide, but that doesn’t mean that symptoms are viewed with the same importance, or urgency, across cultures.  Looking at the symptoms on their own does very little for understanding the impact cross-culturally. Matson et al. (2015) assert that because culture is such a fundamental aspect of our being it must be taken into account when considering “psychological disorders” and have discovered that what is concerning to mothers in the United States is not the same as what is concerning to Latina mothers, and neither is the same as what concerns Indian parents. Another consideration is that within various cultures, a stigma exists toward people with autism (“Autism Spectrum Disorders,” 2019) which could extend to the family.  In personal observation, Riany (2016) has noted that traditional Indonesian society dictates if a child is born with a disability, the cause is through some fault of the parents for breaking taboos during the pregnancy. Therefore, culturally based values may influence what symptoms parents reveal during conversations with a health professional. 

The studies I’ve read that addressed accessibility for these parents, while not surprising, is startling and distressing. Information accessibility often impedes many families in LMIC. Considering countries in South-eastern Europe, Preece, et al. (2017) state that while there are programs available in Croatia, often they are inaccessible for families and most do not offer autism-specific training. Select portions of the country do offer early interventions and support groups, but they do not appear to be widely available. Also, there is a paucity of information in Cyprus and Macedonia; anything that is offered seems to be on an as-needed, occasional basis. The situation is even more dire in Ethiopia. Tekola et al. (2019) noted that: 

Services for children with developmental disorders or delays are mainly restricted to the country’s capital city, Addis Ababa, and are therefore inaccessible to the majority (85%) of the population living in rural areas (Tekola et al., 2016; Zeleke, Hughes, & Chitiyo, 2018). 

Many Indonesians have “limited access to media and health information” (Riany, Cuskellya, & Meredith, 2016) and this could be related to the strict information sharing regulations and other barrier issues facing Indonesian libraries. In an effort to increase community member’s well-being, Irhamni Ali of the National Library of Indonesia supports an increase in the community’s interactions with the libraries (Eberhart, 2016).

source: https://www.who.int/images/default-source/maps/global_mentalhealthpsychiatrists-2011.png?sfvrsn=a6751216_0

Speaking about the refugee crisis, Lauersen (2019) has commented that for those who aren’t directly affected, the crisis may seem far-removed. However, we are urged to remember that they are more than just “refugees.” They are just like us, and want the same thing; to be seen as a person, rather than a number. This same idea can be applied to parents across the globe who have children with autism. The results I’ve discussed highlight the importance of education and information disbursement concerning neurodevelopmental disorders, because at the end of the day, no matter what country they’re in, parents deserve equal access to information no matter their location or socio-economic status. 

References

Autism Spectrum Disorders. (November 7, 2019).  Retrieved from https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders

Eberhart, G. (2016, August). Libraries improving lives in Asia and Oceania: Helping people create sustainable communities globally. American Libraries. Retrieved from https://americanlibrariesmagazine.org/blogs/the-scoop/libraries-improving-lives-asia-oceania/

 Ekoja, I.I. (2017). Information needs and behaviors of populations in less developed regions. In J. D. McDonald, & M. Levine-Clark (Eds.), Encyclopedia of Library and Information Sciences, (4th ed.). Retrieved from https://doi-org.libaccess.sjlibrary.org/10.1081/E-ELIS4

Hahler, E.-M., & Elsabbagh, M. (2015). Autism: A global perspective. Current Developmental Disorders Reports, 2(1), 58-64. doi: 10.1007/s40474-014-0033-3

Lauersen, C. (2019). A Million Stories. Retrieved from: https://christianlauersen.net/2019/08/07/a-million-stories-how-libraries-foster-integration-of-refugees-through-culture-and-storytelling

Malcolm-Smith, S., Hoogenhout, M., Ing, N., Thomas, K.G.F., & de Vries, P. (2013). Autism spectrum disorders—Global challenges and local opportunities. Journal of Child and Adolescent Mental Health, 25(1), 1-5. Retrieved from https://doi.org/10.2989/17280583.2013.767804

Matson, J.L., Matheis, M., Burns, C.O., Esposito, G., Venuti, P., Pisula, E., . . . Goldin,R.L. (2015). Examining cross-cultural differences in autism spectrum disorder: A multinational comparison from Greece, Italy, Japan, Poland, and the United States.  European Psychiatry, 42, 70-76. doi.org/10.1016/j.eurpsy.2016.10.007

Preece, D., Symeou, L., Stošić, J., Troshanska, J., Mavrou, K., Theodorou, E., &  Škrinjar, J.F. (2017). Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe. European Journal of Special Needs Education, 32(2), 252-269, doi: 10.1080/08856257.2016.1223399 

Riany, Y.E., Cuskellya, M., & Meredith, P. (2016). Cultural Beliefs about Autism in Indonesia. International Journal of Disability, Development and Education 63(6), 623-640. Retrieved from https://doi.org/10.1080/1034912X.2016.1142069

Tekola, B., Girma, F., Kinfe, M., Abdurahman, R., Tesfaye, M., Yenus, Z., . . Hoekstra, R.A. (2019). Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia. Autism. Retrieved from https://doi.org/10.1177/1362361319848532