Sunday, August 4, 2013

Autism and Culture



Cultural norms affect how autism is viewed and treated.

Last month I took a flight with an uncooperative Ryan, who upset at sitting in a hot and stuffy airplane, was forcefully kicking the seat in front of him.  Trying to get him to stop seemed to upset him even more, which was followed by faster and harder kicking.  Knowing parents with autistic children have been removed from flights, I was concerned what might happen if his tantrum didn’t subside.  After a few moments, a petite Korean woman turned and asked me to get him to stop.  I apologized to her and told her I was trying to calm him down, but explained that he is autistic.  She recoiled and said, “Oh! So sorry!”, and immediately turned around.  Her reaction, as if I’d told her Ryan had a terminal and highly contagious disease made me wonder about the way culture affects how autism is viewed and treated in different parts of the world.

Culture can be defined as a system of meanings through which people organize and make sense of their lives, and has a direct effect on how people with autism are regarded and treated, both by society and the medical establishment.  Some cultures are more likely to simply accept a child’s autism and not seek treatment, while others may see disability as something to be ashamed of and not admitted publicly.

Getting back to the Korean lady on the airplane…no doubt her cultural bias affected her response to being told Ryan was autistic.  Koreans are very concerned about “saving face”, which is rooted in their deeply embedded Confucian traditions.  Americans become embarrassed or angry for themselves when placed in uncomfortable situations, while Koreans feel shame and guilt for the sake of others.  Koreans are also very conscious of sisun, the way you are perceived and judged by others. The concepts of saving face and sisun likely impact the way autism is viewed by Korean society.
 
Respect for elders and those in higher positions is very important in Korean tradition.
Another interesting aspect of Korean culture is once you are married and have a child, you are no longer called by your own first name, but rather as the child’s father or mother.  I always find it amusing when my Korean friend’s mother refers to her son-in-law as so-and-so’s father, rather than simply “Paul”.  This close identification with one’s children defines social stratification; therefore having a child with a disability must be the fault of the parents. It is an unspoken cultural norm not to mention the disability because it is perceived as a shameful situation; therefore a Korean mother is apt to deny her child has a disability to maintain face for the sake of others and out of concern for other people’s negative sisun.

Viewing autism as a shameful condition may explain why Reactive Attachment Disorder (RAD) is more commonly diagnosed and is used synonymously with autism in Korea. A clear differentiation is made between autism and RAD by the American Psychiatric Association, but RAD is seen as more culturally and socially acceptable than an autism diagnosis.  It is difficult for me to accept a Korean woman would prefer to be thought of as an unloving mother than the parent of a child with a disability.

Perhaps because of this cultural bias against disability, the only therapies for children with ASD described in the Korean literature were music therapy, massage therapy, play therapy, psychotherapy and attachment promotion, rather than the behavioral and developmental interventions found to be effective in other countries.  ABA has not attracted research or clinical interest in Korea.

Viewing disability as shameful is hardly unique to Korean culture.  For example, in some Mexican, Haitian and Latin American cultures, disability is seen as the result of a woman or family being cursed or someone giving them the “evil eye”.  In some Puerto Rican societies mothers are blamed if they give birth to a child with a severe disability because the child’s disability is thought to be a punishment for the mother’s sins. 

This is similar to some parts of India where the belief is held that disability comes about as retribution for sins committed by the child or parent in a past life.  Roy R. Grinker, an anthropologist at George Washington University who has researched autism in different cultures says in India someone with autism is usually called mentally retarded or if not that, insane.  He goes on to say pediatricians in parts of India may not even be aware of the word autism.
 
Indian disability awareness campaign.
Beliefs regarding the causes of disability affect what treatments are sought out for remediation. Muslim families in Pakistan who believed their child’s autism was a result of Allah’s will were more likely to consider the condition unchangeable and felt responsible to care for their children in only basic ways.  A participant in a 2009 study conducted by Mirza et al said, “We don’t have to make him get better. We only have to feed him, wash his clothes and clean him overnight…” (Mirza et al. 2009, p 564). Similar beliefs have been found among people devoutly following other faiths.

Other cultures offer a more positive outlook.  Members of the Navajo tribe view the person with a disability as a teacher who provides valuable lessons to the rest, and who offers a sixth sense or a unique gift.  In a community such as this, there could be concern treatment for the child’s autism could interfere with their higher purpose within the tribe.

Kim (2012) visited schools in León, Nicaragua and found autism was not well-known among the general population yet those afflicted with it were readily accepted by their community, and shared the idea that “everyone is the same”.  Kim found that although people in León did not know much about autism, they were also untroubled by the differences in cognition and behavior presented by those with autism and it did not trouble anyone in the community very much. Teachers did what they could to help their students with autism.

No doubt there are other cultures who readily embrace disability, to include autism.  I would like to know more about those societies, how they treat their children, and what the outcomes are.


I apologize if today’s entry reads more like a research paper.  My musings led me to scour the USC on-line libraries for scholarly papers on this topic, which I find so compelling.  Regardless of culture, I firmly believe knowledge is power—ignorance of autism makes it a scary condition.  I hope all children, regardless of country of origin, racial, ethnic or religious affiliation have parents, educators or medical professionals who will advocate for their needs, and will help make their communities aware and understanding of autism.  I hope the next time Ryan and I are on an airplane together, if he becomes upset and kicks the seat in front of him, the occupant will not retreat in fear, but will be more like the community of León, and will accept the differences that come with autism—which may from time to time bring some discomfort.

References

Ennis-Cole, D., Durodoye, B. A., Harris, H. L. (2013).  The Impact of Culture on Autism Diagnosis and Treatment: Considerations for Counselors and Other Professionals.  The Family Journal.  Vol 21(279).

Grinker, R. R. (2010). Autism and culture: the effect on epidemiology and diagnosis at home and abroad.  Henry Stewart Talks, 2010.

Kang-Yi, C. D., Grinker, R. R. & Mandell, D. S. (2013). Korean Culture and Autism Spectrum Disorders. Journal of Autism and Developmental Disorders.  Vol 43(503); 503 – 520.

Kim, H. U. (2012). Autism across cultures: rethinking autism.  Disability & Society. Vol 27(4); 535 – 545.

Mirza, I., Tareen, A., Davidson, L. L., & Rahman, A. (2009). Community management of intellectual disabilities in Pakistan: A mixed methods study. Journal of Intellectual Disability Research, Vol 53(6), 559 – 570.

Ravindran, N. & Myers, B. J. (2012).  Cultural Influences on Perceptions of Health, Illness and Disability: A Review and Focus on Autism. J Chil Fam Stud (2012), Vol 21: 311 – 319.

12 comments:

  1. I truly enjoyed reading your article. It was very informative and very well thought out. I have a son with Asperger's, but I face some similar challenges with him as well. Also, as far as the Puerto Rican culture is concerned, yes, they are very superstitious. However, there is a difference between the educated versus the uneducated Puerto Ricans. The educated should know better. Lol!

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