Cultural Perceptions Toward Children With Autism Spectrum Disorders - Case Study Example

Cultural Perceptions Toward Children With Autism Spectrum Disorders Introduction “It seems that for success in science and art, a dash of autism is essential." ----Dr. Hans Asperger (Austrian Pediatrician after whom the Asperser Syndrome is named) Autism is an incurable disorder that is present at birth with symptoms becoming noticeable before the age of three. More specifically, people with autism mainly lack the ability to communicate or to interact with others (Wilder, Dyches, Obiakor, & Algozzine, 2004). It is a developmental disorder that occurs due to abnormal development of or injury to the brain and leads to lifelong symptoms like repetitive behaviors (Freeman & Cronin, 2002). However, people with autism may have exceptional skills and abilities in diverse areas including mechanical reading, spelling, and computational tasks (Minshew, Goldstein, Taylor and Siege, 1994). Autism has acquired the proportions of an epidemic as now it is found to occur in every 1 out of 166 individuals as opposed to the earlier statistics that showed that it occurred in 3 individuals out of almost 10,000 people in the United States [Ive added ‘US’ here as you said, but I think that this is worldwide statistics based on center for disease control US surveys] (Grinker, 2007). According to the National Autistic Society of UK (2008), the current prevalence rate of autistic disorders in children is 1 in 100 as opposed to previous estimates of 116 in 10,000 for all autism spectrum disorders (Baird et al, 2006). Growth in the number of cases for autism is attributed largely to the better diagnostic capabilities developed worldwide as well as due to the more openness in attitude of parents and family members to accept and acknowledge their children’s autism (Grinker, 2007). There is vast amount of literature available pertaining to the improvements in the methods and technology used for the diagnosis and treatment of autism (Amaral, Schumann, Nordahl, 2008; Landa, 2007; Sigman, Spence and Wang, 2006) as well as for the generation of awareness about this condition (Johnson and Myers, 2007). Some studies have also found differences in the incidence rates of autism in different regions and countries (Fombonne, 2005) which in turn could be due to difference in the available diagnostic resources or in the attitudes of the primary care takers. There is however still a growing debate regarding the causes of autism that are attributed to increase in environmental stressors, genetics and other factors (Al-Issa, 2000; Raguram, 2002; Manson, 2000). Furthermore, issues involved with Autism are not only restricted to the medical treatment and making those suffering from the condition self-sufficient to look after their needs. The issues also involve social rehabilitation and integration of the autistic people into the society and their acceptance by the community as a useful member. The social rehabilitation and the integration of the autistic individuals in the mainstream society is found to be dependent upon the perception of the families towards the disabilities and their attempts to seek help, as well as the social acceptance of autism by the peers and society in general (Ingstad & Whyte, 1995). This perception in turn is dependent upon the culture and religion within which the autistic people live (Magana & Smith, 2006). The current literature review is therefore focused on exploring how different cultures and different countries perceive autism and how this perception may impact upon the rehabilitation and acceptance of the autistic individuals. The literature review will delve into differences in cultures – more specifically, in the collectivistic culture of the Asian region and the individualistic culture of the West – and how people in these cultures view autism. Culture and Values “Culture is a framework in which we communicate” ------Stephen Roberts [I am unable to locate background info about Stephan roberts but I like this quote] “Culture is like wealth; it makes us more ourselves, it enables us to express ourselves” Philip Gilbert Hamerton (English artist and author) Culture is made up of values, beliefs, attitudes and behaviors [I am not sure how better to rephrase this; as it has a citation it will be ok through any plagiarism software] that are shared by a group of people and which are handed down and preserved through generations (Mandell and Novak, 2005). Culture is also defined in terms of shared cognitions, shared standards of behaviors and assumed roles and self definitions that members indulge in (Triandis, 1996). Culture is measured in terms of the above mentioned attributes and is found to vary across different geographic regions. The Value Theory defines ten sets of values that vary across cultures (Bardi & Schwartz, 2003). These values include Self-Direction or independence of thought and action; Stimulation or need to have excitement and motivation in life; Hedonism or sensuous self-gratification; Achievement or to have competence and success; Power or to have status and esteem; Security or the need to have safety, harmony and stability in society; Conformity or the need to adhere to the group norms; Tradition or the need to maintain status quo; Benevolence or the need to do good to others within the group and Universalism or the need to do good to all irrespective of group boundaries (Schwartz, 2003). The various values of culture have been combined into a framework as proposed by Hofstede and include attributes like High/Low Power Distance, High/Low Uncertainty Avoidance, Feminine/Masculine, Short term/Long term Orientation and Collectivism /Individualism (Hofstede, 2004). Among the above dimensions of culture, the dimension of Collectivism and Individualism impacts greatly on the inter-personal relations and social interactions within the culture. It also impacts upon how people think of themselves and of their roles within the community (Rack, 1991) Collectivistic Cultures encourage the members to give priority to the group’s goals over their individual goals and needs (Triandis, 1989). It also requires that conformity to the group is maintained and that there are no open conflicts within the group. Further, collectivist approach dictates that a stringent distinction be maintained between in-group and out group and all members of the groups to adhere to the creating inter-personal and reciprocal relationships within the group. Another important feature of the collectivistic culture is that the members of the group are expected to define themselves in terms of the group and to identify with the groups’ image. Individualistic cultures promote individuals to pay more attention to their individual goals and to make efforts to meet their own aims even at the cost of the group’s (Rhee, Uleman and Lee, 1996). Further, individualistic cultures condone in-group confrontations and respect the individual’s distinct identity without any affiliation to the group’s image. The measurement of the collectivism or individualism of a culture has revealed that Asian, Latin American, African and Middle Eastern countries show a collectivistic culture while the countries of West Europe and America show a higher individualistic culture (Hofstede, 2004) Impact of Culture on Perception of Autism Culture has been found to affect the perception of family and of people in general about a child’s disabilities. These perceptions are related to assumed causes of autism, how family members see their own roles in the upbringing and caring for a disabled member, how they pursue remedial and support activities and how the other members of the society interact with the disabled person (Mandell & Novak, 2005). Perception of Autism in Individualistic Cultures Perceptions about Origin of Autism In the Western culture, the origin of Autism is ascribed to physical explanations like genetic influence or environmental factors like mercury contamination (Dyches et al, 2004). The perception of western nations toward Autism and other developmental disorders is therefore more realistic and people tend to accept these disorders as products of genetics or birth defects. This perception makes the individuals see autism as a condition for which the family members or the autistic individual are not held responsible. Perceptions about Care-giving to Autistic Individuals In the Anglo culture that is predominantly individualistic, it is found that care giving is considered to be the prime responsibility of parents. As the individualistic culture encourages people to live in nuclear families, there is little help from the extended family in terms of care giving (Mahoney, O'Sullivan and Dennebaum, 1990). Also, community level support is less and parents have to actively seek out other parents with similar problems to interact with and gain support. Nonetheless, there are numerous governmental and private agencies that provide information and resources to parents of autistic individuals (Mahoney, O'Sullivan and Dennebaum, 1990). Perceptions about Reaching out for Medical Help Other researches have also found that the predominantly white individuals have more positive attitude than Asians, Hispanics or American Africans towards mental illness and actively seek out medical intervention (Mori, Brouillard, Kawasaki, Hispanic, Zavala, & Chan, 2001). Also, as the Europeans and Americans are found to attribute the origins of mental illness to genetic or environmental factors, there is a greater faith in the remedies that are offered by the medical professions (Milville & Constantine, 2006).The cultural values of the western nations make it possible for the individuals to talk about their problems and emotions easily and to seek out professional help such as psychotherapy (Milville & Constantine, 2006). Perceptions about Social Integration of Autistic Individuals Understanding and accepting the true cause of a disorder, does not prevent people from stereotyping or segregating the autistic population even in the western culture. For example, some of the common perceptions about autistic children in the West are that they are undisciplined and unsocial (Aviram, 2007). A study conducted in 2006 in the US reveals that the people in America do not show an increase in tolerance or acceptance of people with developmental illness over a period of ten years (Schnittker, 2008). The same study shows that there has been a growth in awareness and acceptance of the genetic origins of many developmental illnesses like depression, autism and schizophrenia. However, increase in acceptance of the genetic provenance of the developmental illness is not found to guarantee that the people with developmental illness would be more accepted by the society. The reasons cited for these attitude of people is that the assumed or stereotypical symptoms of developmental illness are still considered to be dangerous by the people whatever their origins be (University of Pennsylvania, 2008). As such, Americans still display inhibitions in interacting freely with people suffering from disorders. This inhibition extends to avoiding staying in the same neighborhood as the one housing ill persons, working closely in office with people with disorders or making friends with such people (University of Pennsylvania, 2008) However, individualistic cultures are better prepared for accepting the autistic individuals as useful and productive members of society. In a research conducted worldwide on the perceptions of people about societal integration of mentally ill people, it was found that 61% of British subjects were inclined to accept such people within the society (TNS UK, 2009). Perception of Autism in the Collectivistic Cultures Perceptions about Origin of Autism Countries like India, China, Japan and other Asian countries as well as Middle-Eastern and Latin and African nations that rely on collectivistic culture are seen to create unique understanding of and attitude toward people with developmental disabilities. The causes of developmental disorder are traditionally not understood well – for example, in the case of India and several other Asian nations, sometimes autism is attributed to ‘ancestral unrest’, ‘sins committed in past life’ or ‘ire of the gods’. Other reasons ascribed to the autism in these cultures are mother’s infidelity or use of witchcraft (Dyches et al, 2004). In Latin cultures, the causes of autism are less malevolent, instead the people in this culture believe that having an autistic child is a gift from the god and that the parents are being given a chance to do well in this world (Dyches et al, 2004). In African-American families, a closely held view of autism’s origin is that unhealthy diet leads to this disorder in children (Dyches et al, 2004). Similarly, Jews ascribe the cause of autism to diverse factors including physical – genetic and environmental-, parental behavior and neglect and to god’s will (Shaked & Yoram, 2006). All these reasons make the Jewish families respond differently to approaching diagnosis and treatment of autism. Perceptions about Care-giving to Autistic Individuals The ascribed origins of autism may impact upon how people view their own responsibilities and their roles towards family members who are autistic. For example in the Latino culture, family members are required to make self-sacrifice and do more than they get back from it. Further, they also believe in family loyalty and solidarity and of taking care of the family (Blancher and McIntyre, 2006). This ensures that autistic people are taken care of within the family and autistic parents are able to enlist the help of extended family members for the same. In Japan it is found that the culture determines the mother’s role as the primary caregiver as well as secondary teacher. This role definition of the mothers in this culture makes it possible for the Japanese mothers to take responsibility of their disabled child and to get involved in their education (Abe, 1998). In Greece, having an autistic child is considered as public shame and hence family members, especially mothers are stressed and may have a negative attitude towards the autistic child (Blancher and McIntyre, 2006). Similarly, the cultural influence in South African families makes the family and the mothers shy away from taking care of their disabled children as they have traditionally depended upon governmental support for looking after the needs of disabled persons (Gwalla-Ogisi, Nkabinde & Rodriguez, 1998). It is also found that religion too affects the day to day living of such families. People who are highly religious, as in the case of Latin culture that promotes Catholicism, primary care givers are able to devote themselves with great courage to the upbringing of autistic children (Shaked & Yoram, 2006). Similarly, in the Jewish religion, the absolute faith in God enables the family to cope better with the stress of having autistic children (Shaked & Yoram, 2006). Perceptions about Reaching out for Medical Help Research has found that people belonging to different cultures may show a difference in their faith in medical help for autism. For example, African-American families hesitate to get their children to see a doctor and hence miss out on the opportunity to get an early diagnosis (Dyches et al, 2004). In the Indian culture, social stigma associated with having a disability makes the family members hide their children’s disorders and not contact healthcare services (Dyches et al, 2004). Similarly, in Latino culture the belief of taking care of the family matters and family members within the family inhibit the Latino parents from seeking medical help (Blancher and McIntyre, 2006). Jewish orthodox families may feel inclined to seek out their rabbi’s advice as opposed to reaching out for medical treatment (Shaked & Yoram, 2006). Perceptions about Social Integration for Autistic Individuals The collectivistic nature of the society ensures that the people suffering from developmental disorders are not abandoned or left to fare out for themselves. The causal attributions of disorders may prevent a medical and correct diagnosis and may also lead to non-treatment of the condition. This may ultimately result in the aggravation of the disorder and the continued dependence of the person on his family support. Also, it may lead to the society perceiving the autistic individual as anti-social or mentally ill. (Raguram, 2002) Further, several researches have postulated that the Western society tends to highlight the psychological symptoms while the Eastern society highlights the physical symptoms of disorders (Centre for Addiction and Mental Health, 2008). In the case of autism, the very nature of the symptoms – not making eye contact, not talking, tics etc. – make autism appear as a psychological disorder or a mental illness instead of being accepted as a developmental disorder (Salahi and Chitale, 2008). There has been a stigma associated with mental disorders in Asian countries and there is found to be an inherent lack of initiative to take recourse to medical and therapeutic help (Lauber and Rössler, 2007) Also, the symptoms of autism like lack of social interaction, lack of friends and inability to manage interpersonal relations make the autistic individuals appear as abnormalities in a culture that thrives on collectivism and extended family and friends. For example, in the Indian culture there is a tremendous pressure on individuals to conform to the social norms and socially acceptable behavior that includes showing respect to elders and communicating feelings openly. These cultural norms mean that people with impaired social interaction may be viewed as non-conformists or as rebels (Wilder et al, 2004). Culture also determines how much an individual is encouraged to become self-dependent and take responsibility oh his own self. For example, studies conducted among families in Taiwan and in America have found that there is a difference in the degree to which the two cultures encourage self-determination in children and young adults (Zhang, Wehmeyer & Chen, 2005). This finding can be extended in the case of children with autism or other disabling disorders. In cultures that promote lesser amount of self-determination, the children with autism may not be encouraged to learn skills that lead to self-sufficiency and self-determination. Further, in collectivistic cultures, there is an increased reliance on the use of interdependence and cooperation of friends and family members. These attributes are in contrast to the rehabilitation objectives for autistic individuals that require the autistic people be made self-reliant and independent (Trembath, Balandin, & Rossi, 2005). Summary The literature review has brought to light some very interesting insights about how autism is perceived in different cultures. In the Western Individualistic culture, autism is perceived as a disability or a disorder and people with autism and the culture encourages the accurate diagnosis and treatment of autism. The autistic people are better able to get assistance that makes them self-dependent or that enables them to hone their specific skills to make a contribution to the society. However, it is also found that western culture does not approve of a full integration of such individuals in the mainstream society and people still shy away from socially inter-mingling with people with autism. In the Eastern society, autism is viewed as a disability that may have been caused due to parental neglect or some other supernatural causes. There is more faith on alternate therapies as well as support from family and community for people with autism. However, there is an inherent lack of trust on reaching out for psychiatric help or for instilling training and skills to make autistic individuals self-dependent. Further, there is a stigma attached to the people who are judged as mentally ill or not-normal by the society. To sum up, it can be said that the western individualistic culture provides for better opportunities and facilities for putting people with autism on the path of self-dependence but it does not provide them with the safety net of life-long care-giving that the collectivistic cultures do. However, the collectivistic culture associates a certain stigma with mental and developmental disorders and in the case of autism it is aggravated by the existence of the lack of ability to make interpersonal associations. As such, autistic individuals in collectivistic cultures may not be assimilated as productive and useful members of the society. Reference: 1. Al-Issa, I. (2000). ‘Al-Junun: Mental illness in the Islamic world’ Connecticut:International Universities Press, Inc. 2. Amaral, D. G., Schumann C. M., Nordahl C.W. (2008) ‘Neuroanatomy of autism’ Trends Neuroscience 3, 137–45 3. Aviram, J. 2007. Natural Learning Concepts. [Online]. Available at: http://www.free-press-release.com/news/200702/1172164527.html Retrieved on 12 December 2009 4. Baird, G. et al (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). The Lancet, 368 (9531), 210-215. 5. Bardi, A., & Schwartz, S. H. (2003). Values and behavior: Strength and structure of relations. Personality and Social Psychology Bulletin, ­29, 1207-1220. 6. Blancher, J. & McIntyre, L.L. (2006). ‘Syndrome specificity and behavioral disorders in young adults withintellectual disability: cultural differences in family input’ Journal of Intellectual Disability Research, 50,184-198 7. Centre for Addiction and Mental Health, 2008 ‘Culture And Depression’ [Online] available at Retrieved on 12 December 2009 8. Freeman, B. J. & Cronin, P. (2002) ‘Diagnosing Autism Spectrum Disorder in Young Children: An update. Infants & Young Children, 14(3) 1-2 9. Dyches, T., Wilder, L., Sudweeks, R., Obiakor, F., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34, 211-222. 10. Fombonne E. 2005 ‘Epidemiology of autistic disorder and other pervasive developmental disorders’ Journal of Clinical Psychiatry 66 (10) 3-8 11. Grinker, R. (2007) Unstrange Minds: Remapping the World of Autism. PA: Basic Books 12. Gwalla-Ogisi, N., Nkabinde, Z., & Rodriguez, L. (1998). ‘The social context of the special education debate in South Africa’. European Journal of Special Needs Education, 13(1), 72-75. 13. Hofstede, G. 2004. Cultures and Organizations: Software of the Mind.  New York: McGraw-Hill U.S.A. 14. Ingstad B. & S. R. Whyte, 1995. Disability and Culture. California: University of California Press 15. Johnson C. P. and S. M. Myers. 2007. ‘Identification and Evaluation of Children With Autism Spectrum Disorders’ Pediatrics 120 (5), 1183-1215 16. Kettmann, K. 2009. ‘Autism Attacked Alternatively’ Independent.Thursday, November 19, 2009. [Online] available at: http://www.independent.com/news/2009/nov/19/autism-attacked-alternatively/?print Retrieved on 12 December 2009 17. Landa, R. (2007). Early communication development and intervention for children with autism. Ment Retard Dev Disabil Res Rev, 1, 16–25 18. Lamorey, S. (2002). The effects of the culture on special education services: Evil eyes, prayer meetings, and IEPs. Teaching Exceptional Children, 34(5), 67-71. 19. Lauber, C. and W Rössler. (2007) Stigma towards people with mental illness in developing countries in Asia. International Review of Psychiatry 19:2, 157-178 20. Mahoney, G., J. O'Sullivan and J. Dennebaum (1990). ‘Maternal Perceptions of Early Intervention Services’ Topics in Early Childhood Special Education, 10 (1), 1-15 21. Magana, S. & Smith, M. (2006). Psychological distress and well-being of Latina and Non-Latina White mothers of youth and adults with an autism spectrum disorder: cultural attitudes towards co-residence status.American Journal of Orthopsychiatry, 76, 346-357 22. Mandell, D. & 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, 110-115. 23. Manson, S. (2000). ‘Mental health services for American Indians and Alaska Natives: Need, use, and barriers to effective care’ Canadian Journal of Psychiatry, 45(7), 617-627. 24. Minshew, N. J., G. Goldstein, H. G. Taylor and D. J. Siege. 1994 ‘Academic achievement in high functioning autistic individuals ’Journal of Clinical and Experimental Neuropsychology. 16 (2) 261 - 270 25. Milville, M. L., & Constantine, M. G. (2006). Sociocultural predictors of psychological help-seeking attitudes and behavior among Mexican American college students. Cultural Diversity & Ethnic Minority Psychology, 12(3), 420-432. 26. Mori, L., Brouillard, C. R., Kawasaki, S., Hispanic, T., Zavala, N., & Chan, K. (2001). Ethnicity, gender, and opinions of mental illness and psychotherapy. Poster presented at the annual convention of the Western Psychological Association, Maui, HI 27. National Autistic Society of UK (2008). ‘Statistics: how many people have autistic spectrum disorders?’ [Online] available at: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=235&a=3527 Retrieved on 12 December 2009 28. Northwestern University, (2009). "'Culture Of We' Buffers Genetic Tendency To Depression." ScienceDaily 30 October 2009. 12 December 2009 Retrieved on 12 December 2009 29. Prater G. and J. Timmerman (2007). The Journal of the International Association of the Special Education, 8 (1), 12-16 30. Rack , P. (1991). Race, culture and Mental Disorder. London: Routledge 31. Raguram, R. (2002). 'Traditional community resources for mental health: a report of temple healing form India. British Medical Journal, 6(1) 38-41. 32. Rhee, E. , J. S. Uleman and H. K. Lee (1996). ‘Variations in Collectivism and Individualism by Ingroup and Culture:Confirmatory Factor Analyses’ Journal of Personality and Social Psychology 71 (5), 1037-1054 33. Salahi, L and Chitale, R. (2008) ‘Ten Myths about Autism’ ABC News [Online] available at: http://abcnews.go.com/Health/ColdandFluNews/story?id=6089162&page=1Retrieved on 12 December 2009 34. Schnittker J. (2008). “An Uncertain Revolution: Why the Rise of a Genetic Model of Mental Illness Has Not Increased Tolerance,” Social Science and Medicine, 67 (9), 1370-1381 35. Schwartz, H. S. (2006) ‘Basic Human Values: Theory, Measurement, and Applications’ Revue française de sociologie, 47, 4 36. Shaked, M. & Yoram, B. (2006). Grappling with affliction: autism in the Jewish Ultra Orthodox community in Israel. Culture, Medicine and Psychiatry, 30, 1-27. 37. Sigman, M., Spence, S. J., Wang, A. T. (2006). Autism from developmental and neuropsychological perspectives. Annu Rev Clin Psychol, 2,327–55. 38. TNS UK. (2009). Attitudes to mental illness research. Retrieved 10 November 2009 from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsStatistics/DH_100345 39. Trembath, D., Balandin, S., & Rossi, C. (2005) Cross-cultural practice and autism. Journal of Intellectual and Developmental Disability, 30, 240-242 40. Triandis, H.C. 1989, ‘The Self and Social Behaviour in Different Social Contexts’ Psychological Review 96 (3), 506-520 41. Triandis, H.C. (1996), ‘The Psychological Measurement of Cultural Syndromes’ Psychological Review 96 (3), 506-520 42. Turnbull, A., Turnbull, R., Erwin, E. & Soodak,L. (2006). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust, 5th ed. Upper saddle River, NJ: Merrill-Prentice Hall.Abe 43. University of Pennsylvania (2008). "Americans Show Little Tolerance For Mental Illness Despite Growing Belief In Genetic Cause." ScienceDaily 29 August 2008. 12 December 2009 . Retrieved on 12 December 2009 44. Wilder, L., Dyches, T., Obiakor, F., & Algozzine, B. (2004). Multicultural perspectives on teaching students with autism. Focus in Autism and Other Developmental Disabilities, 19, 105-113 45. Zhang, D., Wehmeyer, M.L. & Chen, L.J (2005). Parent and teacher engagement in fostering the self-determination of students with disabilities. Remedial and Special Education, 26(1), 55-64 Read More