The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder

Abstract

The current study investigated the lived experience of 12 parents of children with an Autism Spectrum Disorder in everyday cultural contexts in Goa, India. Narratives from parents collected between 2009 and 2010 were analyzed using the procedures of phenomenological psychology. Four temporal phases of parents’ experience emerged from these data. Findings showed that the earliest phase of the child’s life was a period of relative normalcy and social cohesion. In the second phase, the child’s behaviors began to disrupt the everyday social order, but parents viewed these unexpected behaviors as temporary. In the third phase, parents’ observations in public situations, along with assessments of others, led to a qualitative shift in which parents began to perceive that there was a persisting problem interfering with their child’s social and practical activities. In the fourth phase, parents grappled with developing their child’s capacities to meet existing practical opportunities in the local society, while attempting to reshape the social world to accommodate the abilities and limits of children like their own. Parents’ fundamental concerns throughout their journey were: learning to meet new and unfamiliar challenges as parents, caring for their child’s basic needs, and finding an engaging niche with a sense of belonging for their child in the everyday milieu. Both culture-specific and potentially universal levels of experience are delineated in the overall findings. Implications for culturally sensitive research and practice in India and other low- and middle-income countries are discussed.

The life experiences of Turkish mothers who have children with an autism spectrum disorder

“…This finding is consistent with the results of other studies suggesting that mothers experience problems and their emotional health is disrupted after the ASD diagnosis (e.g. Desai et al, 2012;Koydemir & Tosun, 2009). Though the literature on ASD-culture relationship is limited, the experiences and the intensity of the emotional responses of mothers raising a child with ASD may vary by culture.…”

“…Raising a child with ASD causes limitations in the family's daily, social, and work life. The parents spend most of their time with their child diagnosed with ASD; in other words, it causes life of the whole family to turn around ASD (Cavkaytar, Batu, & Beklan Çetin, 2008;Desai, Divan, Wertz, & Patel, 2012;Güleç-Aslan, Cihan, & Altın, 2014;Woodgate, Ateah, & Secco, 2008). Despite these difficulties, research findings also indicate that living with an individual with ASD strengthens marriages, makes family members patient and have a stronger spiritual life, and parents are happy for dealing with their children in spite of all the challenges (Chang & McConkey, 2008).…”

“…Desai et al, 2012;Dunn et al, 2001), the first finding under the theme of response to ASD diagnosis indicates that the Turkish mothers participating in this study experienced negative emotions to ASD diagnosis. This finding is consistent with the research results in literature which suggest that the first emotional responses of mothers do not vary by culture (Blatcher & McIntyre, 2006;Koydemir & Tosun, 2009).…”

“…Interview questions were prepared by researcher with reference to extensive literature review about the experience of mothers with children with ASD (for example, Desai, et al, 2012) and the 20 years teaching experiences of the researcher. The semi-structured interview included questions relating to the emotions of mothers, their experiences regarding raising a child with ASD, their ways of coping with the challenges they experience, and their perspectives on the future.…”

Oti̇zm Spektrum Bozukluğu Tanili Çocuk Sahi̇bi̇ Anneleri̇n Deneyi̇mleri̇

“…(örneğin, Bilgin ve Kucuk, 2010) odaklıdır. Bu araştırmaların sonuçları; (a) OSB'li çocuğun sosyal-iletişim ve özbakım becerilerindeki yetersizliklerinin, OSB'ye özgü davranış ve uyku sorunlarının ebeveynlerin en fazla güçlük yaşadıkları konular olduğunu (Bilgin ve Kucuk, 2010;Dillenburger ve diğ., 2010), (b) OSB'li çocuğun ebeveynlerinin ve diğer aile bireylerinin tanıyla birlikte şok, inkar, kaygı gibi olumsuz duygular yaşadıklarını, ailenin tüm yaşamını ASD doğrultusunda yaşamak zorunda kaldığını ve bunun aile üyelerini strese soktuğunu (Desai, Divan, Wertz, & Patel, 2012;McCabe, 2008;Werner De Grace, 2004), (c) OSB'li bir çocuk yetiştirmenin ailenin iş yaşamında, sosyal ilişkilerinde, maddi durumlarında ve eşlerin birbirleriyle ilişkilerinde sorunlara yol açtığını (Cavkaytar, Batu ve Beklan Çetin, 2008;Dillenburger ve diğ., 2010;Üstüner Top, 2009;Woodgate, Ateah ve Secco, 2008), (d) ailelerin kendileri ve çocukları için eğitsel, psikolojik ve sosyal hizmet desteğine ihtiyaçları olduğunu (Bilgin ve Kucuk, 2010;Cavkaytar ve diğ., 2008;Dillenburger ve diğ., 2010;McCabe, 2008), (e) ailelerin toplumun özür hakkındaki olumsuz tutumlarıyla başetme konusunda güçlükler yaşadıklarını (Desai ve diğ., 2012;McCabe, 2008;Üstüner Top, 2009) göstermektedir. Bazı araştırma bulgularında ise, bu yeni ve zor durumun evlilikleri güçlendirdiği; aile bireylerine daha duyarlı ve sabırlı olma, hayata daha geniş perspektiften bakma gibi olumlu deneyimler ve kişisel kazançlar kattığı; yaşam için önemli bir amaç kazandırarak aile bireylerini güçlendirdiği ve tüm zorluklara rağmen çocuklarıyla ilgilenmenin ebeveynleri mutlu ettiği bildirilmektedir (Chang Yaz-2014 Cilt:13 Sayı:50 (96-111) www.esosder.org Summer-2014 Volume:13 Issue:50 98 ve McConkey, 2008;Gupta ve Singhal, 2004;Kenneth, Hodgson, McCammon ve Lamson, 2009;Üstüner Top, 2009).…”