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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.
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.
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.
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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