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The influence of differing cultural perspectives in autism

Autism was at one point viewed as a western disorder, however, studies have since identified autism in over 100 countries and estimates suggest 67 million cases of autism globally (Koptez, 2012). The global nature of autism brings with it many challenges of which culture is highly significant. Culture can be defined in many ways but the studies and articles and forum posts used to inform this discussion primarily identify culture through ethnicity and country of origin. The importance of the role played by culture has been reflected in a slowly increasing number of studies and reports over the last 7 years. The following summary provides a list of the way cultural beliefs across and within countries, and among ethnic minorities and immigrants influences all aspects of the autism process.

Cultural definitions of health India: harmony of body, senses, mind and soul Traditional Chinese: Yin Yang, balance of universal forces Native American: balance between human and spiritual world Western world: biological and physiological wellness (Ravindram, 2012)

Causes of Autism Native American: autism may be viewed as a result of the mothers sinful behaviour India: autism maybe viewed as a punishment for sins of the child or parent in a past life Latin American: autism is seen as a curse on the child or family (Ravindram, 2012)

Perceptions of autism China and Korea: autism may be seen in a negative way and the child be kept hidden from society Korea: professional often purposefully misdiagnose suggesting abuse and neglect as the cause of these behaviours, the mothers preferring to suffer rather than the family suffer the stigma of autism Korea: siblings of autistic children may experience shame (Hwang, 2010) Some cultures believe the autistic child has special gifts to share and can teach society important lessons (Ravindram, 2012) Soe cultures do not interpret behaviours associated with autism in Western culture as a concern. A salient example is the Chinese proverb Great minds develop slowly.

Jewish Ultraorthodox: see autism as coming from both a medical and religious etiology (Shaked, 2006). Mothers from a number of cultures have reported a lack of understanding from the extended family and feel they are being judged as poor parents. Minority cultures may be less likely to see autism as a health issue and so less likely to seek medical advice, possibly delaying diagnosis Latino culture: belief in fatalismo , having little or no control over what happens to themselves and others may result in no advice being sought to support an autistic child ( Mandell, 2005) Taiwan: mothers reported having difficulty trying to educate their child with autism to behave in culturally appropriate ways resulting in dishonour being brought upon the family, (Ling-Yi, n.d.). India: a family structure that puts the first born son in a position of importance may lead to families refusing to acknowledge any issues.

Symptoms and Diagnosis India: the cultural importance of social behaviours may cause parents to notice social impairments before any other characteristics. These social impairments are often not noticed until the child starts pre-school America: indicators such as hearing or speech impairments are more likely to be noticed first. ( Mandell, 2005) China: a strong cultural belief in respect for elders may mean that these characteristics are noticed earlier than in Western cultures (DeWeerdt, 2012) China: the words think and believe are used differently than in English which may result in a cultural difference in Theory of Mind (Hughes, 2011) South Korea: children with autism have difficulties using the wide range of suffixes to indicate speaker/subject relationship in the Korean language. This characteristic is not picked up by the western Autism Diagnostic Observation Schedule (Hughes, 2011) South Africa: birthdays are not always celebrated in rural communities therefore the birthday scenario used as a measure of shared excitement in the ADOS would be ineffectual. Researchers have adapted this task to one of sharing a traditional song (DeWeerdt, 2012) South Africa: It is considered impolite for children to make direct eye contact when speaking to an adult, this may be misinterpreted by the ADOS as an autistic indicator (DeWeerdt, 2012) In poorer cultures autistic behaviours of being a fussy eater may be identified sooner as money for food is limited Minority cultures may seek diagnosis later and require more consultations before a diagnosis is made ( Mandell, 2005).

Intervention A cultural belief that autism needs to be cured can result in a high drop out rate from interventions offered by health or educational professionals is often seen Families that are less acculturated show a lower rate of maintaining interventions prescribed by professionals and are less likely to accept the opinions of educational professionals. In the quest for a cure many cultures may look to alternative treatments including: faith healers, witch doctors, acupuncture, herbal, religious, spiritual or mystical remedies South Asian Muslim families may choose to deal with their childs autism according to cultural beliefs rather than follow professional guidance (Jegatheesan, et al, 2010) Treatment of the autism may be seen to be removing a special gift bestowed upon the child. Families that do not have a usual primary health provider may be less likely to seek advice from health professionals. In many cultures there may exist a lack of knowledge about current autism research and intervention

Interactions with professionals Misunderstandings occur due to cultural language differences. Mandell (as cited in DeWeerdt, 2012) reports white parents in the United States often emphasize a child's lack of communication by saying, 'my child doesn't respond when I call his name', while black parents tend to use phrases like 'my child won't mind me. This statement may be taken as an indicator of disobedience rather than autism. Difficulties arise due to lack of understanding across languages. Many immigrant families are bi or multilingual, this challenges this creates need to be recognised and respected by professionals. Parents may speak to the professional in one language but report back to family elders in a different language. Older siblings may be used as a translator and parents may not feel happy about this. The use of an interpreter is welcomed by many cultures but can bring with it concerns about privacy and confidentiality. Health professionals are often perceived as being impersonal or biased because of ethnicity or language difficulties. Completion of forms not in a familys first language can result in misinformation or withdrawal from the referee process.

Previous negative experiences with professionals from a different culture can deter families from seeking advice and help. Culturally appropriate information presented in a written, pictorial or video format in the first language is recommended. The use of terms accessible to the family rather than medical vocabulary is recommended. Some cultures may require a longer grieving time following diagnosis Goals need to be set collaboratively and be culturally sensitive for families to persevere with interventions suggested by professionals Where meetings and with professionals and IEPs are held can be influenced by culture. Some cultures may be unhappy with professionals coming to their home, fearing judgements being made as to the number of families members in the home and also the way the home is managed. Other families may feel more comfortable in their own home rather than a professionals office. This latter option can also alleviate childcare issues. Support workers becoming involved in culturally specific activities with the family e.g. poi, waiata in Maori culture, may help to develop trust in the parentprofessional relationship. The provision of educational resources that families can make and use at home may help to develop a stronger family-professional partnership and make the family feel valued.

Others Information regarding the processes and treatments around autism should be made available at cultural centres such as churches, community centres, marae. The extended family need educating in order to understand autism and effectively support the child and their family. The high respect afforded to family elders makes their education I autism vital. Geographical and socioeconomic factors may also affect families seeking professional advice and intervention. Immigrant families may fear seeking professional advice due to concerns this may effects their residential status (Allen, 2013). Opportunity needs to be provided for minority cultures to share their opinions and perspectives on autism (NZASD Guideline, 2008).

Conclusion Many of the cultural perspectives raised in this summary result in either avoidance or delay in the diagnosis of autism spectrum disorder among ethnic minorities and immigrants. As it

is widely recognised and accepted that early diagnosis of autism spectrum disorder relates to improved outcomes from intervention it is crucial that professionals are aware of the ways in which culture can affect this diagnosis and be skilled in identifying a culturally appropriate course of intervention. Language and family structure need be understood and valued by professionals and culturally appropriate interventions need to be developed and agreed upon through a partnership of family and professionals.

NZASD Guideline p 220 there is a need to improve the cultural competency of the mainstream workforce so that clinicians, teachers, support workers and carers are working in a more appropriate and effective way.

References
Allen, L. (2013, March 31). Specialist Teaching, Autism Theory and Foundation Forum: Activity SixCulture and ASD. Retrieved from http://specialistteaching.net.nz/mod/forum/discuss.php?d=5626 Daley, T. (2004). From symptom recognition to diagnosis: children with autism in urban India. Social Science & Medicine, 58(7), 1323-1335. DeWeerdt, S. (2012). Culture: Diverse diagnostics. Nature, 491. Retrieved from http://www.nature.com/nature/journal/v491/n7422_supp/full/491S18a.html Education, M. o. (2008). New Zealand Autism Spectrum Disorder Guideline. Wellington: Ministry of Health. Hughes, V. (2011). Researchers track donw autism rates across globe. Retrieved from Simon Foundation Autism Research Institute: http://sfari.org/news-andopinion/news/2011/researchers-track-down-autism-rates-across-the-globe Hwang, S. K., & Charnley, H. (2010). Making the familiar strange and making the strange familiar: understanding Korean childrens experiences of living with an autistic sibling. Disability & Society, 25(5), 579-592. Jegatheesan, B., Fowler, S., & Miller, P. J. (2010). From symptom recognition to services: how South Asian Muslim immigrant families navigate autism. Disability & Society, 25(7), 797-811. Kopetz, P., & Endowed, D. (2012). Autism worldwide: Prevalence, perceptions, acceptance, action. Journal of Social Sciences, 8(2), 196-201. Ling-yi, L., & Orsmond, G. L. (n.d.). Maternal well-being and life-span issues of autism in Taiwanese families of adolescents and adults with autism spectrum disorder. Department of Occupational Therapy and Rehabilitation Counseling Boston University. Retrieved from http://www.fsc.yorku.ca/york/rsheese/psyc1010/wiki/index.php/Families_living_through_A utism Mandell, S., & Novak, M. (2005). The role of culture in families ' treatment decisions for children with autism spectrum disorder. Mental Retardation and Developmental Disabilities, 11, 110-115. Ravindran, N., & Myers, B. J. (2012). Cultural Influences on Perceptions of Health, Illness, and Disability: A Review and Focus on Autism. Journal of Child and Familiy Studies, 21(2), 311319. Shaked, M., & Bilu, Y. (2006). Grappling with affliction: Autism in the Jewish ultraorthodox community in Israel. Culture, Medicine and Psychiatry, 30(1), 1-27.

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