“AUTISM” in Malaysia

JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY, 2017 VOL. 42, NO. 1, 74–89 http://dx.doi.org/10.3109/13668250.2016.1196657 ORIGINAL ARTICLE Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study Kartini Iliasa,c, Jeanette Hui Jean Liawa, Kim Cornishb , Miriam Sang-Ah Parka and Karen Jennifer Goldena aJeffrey Cheah School of Medicine and Health Sciences, Monash University Malaysia, Bandar Sunway, Selangor, Malaysia; bSchool of Psychological Sciences, Faculty of Medicine, Nursing, and Health Sciences, Monash University, Melbourne, Australia; cDepartment of Basic Sciences, Faculty of Health Sciences, Universiti Teknologi MARA, Puncak Alam, Selangor, Malaysia ABSTRACT KEYWORDS Background This qualitative study aimed to explore how mothers gave meaning to their ASD; culture; wellbeing; experiences of raising a child with autism spectrum disorder (ASD) in Malaysia. qualitative; Asian; Malaysia; Methods Using interpretative phenomenological analysis, semistructured interviews were parent; resilience conducted with 8 Malaysian mothers from different ethnic backgrounds (4 Chinese, 3 Malays, and 1 Indian). Results Three themes for the mothers’ adaptation and wellbeing development were identified, including Problem realisation within the context: Learning to spell A-U-T-I-S-M in Malaysia, WE are living with autism, and Resilient overcoming: Climbing Mount Kinabalu. The mothers viewed their child’s ASD symptoms and behaviour problems (e.g., hyperactivity and sleep difficulties) as taking a toll on wellbeing. However, coping strategies, including acceptance, proactive mindset, character growth, spirituality, and parent support networks, fostered wellbeing. Conclusion Both intrapersonal and interpersonal protective processes were important. The findings suggested that Seligman’s (2011) PERMA framework may be applicable to understanding parental wellbeing. Clinical, policy, and research suggestions were discussed. Introduction Psychiatric Association, 2000), the category of pervasive developmental disorders included autistic disorder. Approximately 52 million cases of autism spectrum dis- Autistic disorder diagnostically involved a combination order (ASD) have been reported globally (Baxter et al., of qualitative impairments in reciprocal social inter- 2015). Problematically, however, limited research has action, communication, and repetitive, restricted, and examined ASD within developing, low-to-middle stereotyped patterns of behaviour, with onset before or income, and non-Western countries (Daley, Singhal, & at 3 years of age (DSM-IV-TR, American Psychiatric Krishnamurthy, 2013; Freeth, Milne, Sheppard, & Rama- Association, 2000). The DSM-5 (5th ed.; American Psy- chandran, 2014). In Malaysia, a developing, middle- chiatric Association, 2013) classified ASD as a single income country with a multi-ethnic population com- umbrella category, replacing the four different subtypes prised of three ethnicities as well as indigenous tribes, in the DSM-IV-TR. Comorbity between ASD and symp- very limited awareness and support resources for raising toms of other neurodevelopmental disorders, psychiatric a child with ASD are available (Clark, Brown, & Karra- conditions, and health problems have been demon- paya, 2012; Neik, Lee, Low, Chia, & Chua, 2014; strated (Mannion, Brahm, & Leader, 2014), such as Toran, 2011). In such a context, more information is with attention-deficit/hyperactivity disorder (e.g., Cor- needed in order to translate research into practice and nish & Wilding, 2010) and sleep disorders (e.g., Mannion to foster wellbeing and culturally informed evidenced- & Leader, 2014). based treatments. These comorbid symptoms along with primary ASD symptoms have been shown to significantly affect the Parents of children with ASD: Stress and quality of life of both persons with ASD and their challenges families (e.g., Gardiner & Iarocci, 2012). As a result, In the Diagnostic and Statistical Manual of Mental Dis- ASD has been found to affect the family system both orders (4th ed., text rev.; DSM-IV-TR, American positively and negatively (e.g., Cridland, Jones, Magee, CONTACT Karen Jennifer Golden [email protected] © 2016 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group This is an Open Access article distributed under the terms of the Creative Commons Attribution- NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/ 4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY 75 & Caputi, 2014). Much research has highlighted the dif- present study on wellbeing, which explored the applica- ficulties experienced (e.g., Hayes & Watson, 2013), and a bility of this model to mothers of children with ASD in small, but growing body of research has sought to under- Malaysia. stand the strengths, wellbeing, and resiliency of these It should be noted that the term wellbeing has not parents as well (e.g., Bayat & Schuntermann, 2013). been well defined in the broader literature (e.g., Dodge, Past research indicated family functioning impair- Daly, Huyton, & Sanders, 2012; Ereaut & Whiting, ments and elevated stress levels in parents of children 2008; Manderson, 2005), or in the ASD research field with ASD (e.g., Hayes & Watson, 2013); parents often (e.g., Tint & Weiss, 2016). However, research has reported difficulty dealing with their child’s behaviour increasingly emphasised wellbeing as a multidimensional and emotional problems (e.g., Firth & Dryer, 2013; Her- concept (e.g., Pozo, Sarriá, & Brioso, 2014), which goes ring et al., 2006; McStay, Dissanayake, Scheeren, Koot, & beyond simply adapting and returning to baseline. For Begeer, 2014). Mothers of children with ASD particularly example, Seligman (2011) offered a new theory of well- were often found to play the primary caregiver role (e.g., being, describing wellbeing as flourishing and as a con- Braunstein, Peniston, Perelman, & Cassano, 2013) and struct with five measurable elements with the acronym reported higher levels of depression and stress than “PERMA,” namely, positive emotion, engagement, fathers (e.g., Davis & Carter, 2008; Hastings, Kovshoff, relationships, meaning and purpose, and accomplishment. Brown, et al., 2005; Herring et al., 2006). The impact Seligman described that the PERMA domains fall on the on mothers may be especially strong in traditional positive side of the mental health spectrum and that well- societies. Maternal stress and wellbeing may also be being is not just the lack of negative psychological states affected by paternal factors/paternal wellbeing and vice (Seligman & Csikszentmihalyi, 2000). Garrod (2013) versa (e.g., Hastings, Kovshoff, Ward, et al., 2005), highlighted that when researching wellbeing, “in although research on this interaction is limited. addition to Seligman’s theory, it is important to understand how the PERMA model relates to the world in which each individual lives” (pp. 12–13), and to consider Parental adaptation and wellbeing the social disadvantages and inequities in the Research reported that families of children with ASD can environment. demonstrate positive adaptation and wellbeing. For Furthermore, researchers have highlighted that a con- example, much past research used the double ABCX textual view is needed in order to understand wellbeing model framework to study families of children with (e.g., McNulty & Fincham, 2012). For example, Mander- ASD (e.g., Manning, Wainwright, & Bennett, 2011). son (2005) conceptualised wellbeing as both a social and Hill’s(1958) ABCX family crisis model was expanded individual phenomena. She stressed that the individual to the double ABCX model by adding postcrisis variables sense of wellbeing is embedded and derives from society, in an attempt to describe life stressors, family resources, itself socially produced and sustained by social structures and the meaning of the event over time (McCubbin & and systems. She discussed how conceptions of disability Patterson, 1983). Findings using this framework have are socially produced. As Kwok and Wong (2000) suggested that families may face initial stressors such described, the cultural context may play a role in the as the severity of ASD symptoms as well as an accumu- stress experienced by parents of children with ASD. lation of other stressors such as illness, divorce, or job Dyches, Wilder, Sudweeks, Obiakor, and Algozzine’s loss that may not relate to ASD directly, but intensify (2004) study on the beliefs about ASD among parents the effects of the strain caused by ASD (e.g., Manning from different ethnic groups found that “members of et al., 2011). various cultures may appraise the stressor of autism dif- The model proposed that family adaptive resources, ferently, and these appraisals may be considered to be such as social support, can lead to successful coping negative or positive” (p. 219). Although some ASD- (e.g., Manning et al., 2011). Furthermore, the family’s related research has been conducted examining possible perceptions or the meaning they give to the crisis situ- cross-cultural differences within Asia (e.g., DeLambo, ation can lead to reframing, which has been linked Chung, & Huang, 2011; Jiar & Xi, 2012), culture-specific with lower levels of depression in parents of children factors influencing mothers’ experiences in different set-

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