04 SES 13 C, Attitudes and Perceptions Towards Disability: Recent evidences from research
Studies of parenting children with disabilities have traditionally explored its negative aspects (Potter, 2016), most using tragedy model interpretations that emphasize the grieving, stress, pain, guilt and anger of the parents (e.g. López & Torres, 2010). Negative repercussions for family life like social seclusion, lack of couple cohesion and roles’ disruption have been researched underpinning a deficit model approach typically used by the medical discourse. Regarding Autism Spectrum Disorder (ASD), some studies have changed their perspective going from a pathological perspective in which autism is an impairment to be cured to a neurodiversity approach, where there is no normalcy and difference is common (Kim, 2012).
Following social model interpretations, parents’ reactions and the meanings given by them to ASD are related to the social reality they are in, placing the stressors outside the child and family (Gibson, 2014; Potter, 2016). Parents of children with ASD have withstood society’s ignorance, rejection and stigma against their children while fighting the idea that ASD was caused by less affectionate or caring parenting (Langan, 2011). Currently, many quantitative investigations explore parental perceptions of autism to understand the decision-making process behind seeking proper diagnosis and help (Mire et al., 2017; Quilendrino et al., 2015). Other studies like Vasilopoulou and Nisbet’s (2016) inquire into the quality of life of parents of children with ASD, since parental stress can compromise both parents’ and children’s coping resources.
Notwithstanding, different studies have explored cultural differences in the way societies and parents understand ASD emphasizing the different meanings of health, illness and disability across cultures (e.g. Kim, 2012; Ravindran & Mayers, 2012). The differences between cultures comprise how autism is perceived as more or less significant, as an impairment to be cured based on a biomedical model or as a difference within a culture (Kim, 2012). Jones and Harwood (2009) studied the representation of autism in the Australian print media finding that little helpful information was given (such as on appropriate educational resources) and that autism was mainly presented through normative medical notions that influence the notion of autism as a problem. Likewise, in a study about images and narratives of autism within charity discourses in the United States and the United Kingdom, Waltz (2012) found that charity advertising failed because it did not recognise or try to solve the issue of social disablement. Kim (2012) states that the Korean society is heavily bound by traditional values and gives much importance to the way other people perceive and judge the parents of children with disabilities. Having a child with ASD may be a shameful situation for Korean mothers, who are usually held responsible for their children’s disabilities. Ravindran and Mayers (2012) refer to different cultures where having children with serious disabilities may be interpreted as a punishment for the sins of the parents or even as the product of an enemy’s curse. In Italy, Molteni and Maggiolini (2015) found that 89% of the parents of their study reported significant changes in their lives following the diagnosis of ASD, 30% of the participants identified positive changes, especially within the couple’s relationship.
Some recent studies have looked for different parental experiences related to having a child with some disability. They focus on positive experiences of parents, family resilience and strengths of children with some disability (e.g. Gibson, 2014; Potter, 2016). Other studies (e.g. Hines et al., 2012) look for how parents make sense of autism and how this helps with their ability to cope. Parents may speak about autism from very different perspectives: as parents, as lay experts and as parents with particular academic or professional expertise (Langan, 2011).
Following the current emphasis on cultural differences and positive parental experiences, our research looked for the parents’ perceptions of the social reaction towards ASD in the context of the Spanish society and how their lives changed since the ASD diagnosis of their children. We chose an exploratory qualitative research design since, to our knowledge, ours was the first research to specifically aim for these goals in Spain. The participants were four fathers and four mothers, each of them from a different family. They were recruited through chain referral sampling (Penrod et al., 2003), they all had at least one child with ASD (two mothers had two children with ASD). Their age spanned from 34 to 53 years old (average of 44.38) and their children with ASD (a total of 10) had ages between 5 and 20 years old (average of 10.7). One of the daughters was adopted prior to her ASD diagnosis. Seven of them had Intellectual Disability (ID) as well. All the participants were married, but the husband of one of the participant mothers lived abroad. We used semi-structured interviews so that the participants had more freedom to explain the experiences and feelings related to parenting a child with ASD, the changes they went through and how they felt accepted by other people and society in general. The participants were interviewed in places of their choice like their homes, workplaces or quiet cafeterias. The interviews loosely followed a 13 questions script and had a flexible time duration between 30 and 45 minutes. The data was thematically analysed (Braun & Clarke, 2006) constructing 21 categories both inductively and deductively. Some categories derived from the goals and questions of the research (e.g. changes in the couple’s relationship, upside of having a child with ASD) and others came from unexpected answers or aspects mentioned by the participants (e.g. integration policies assessment).
All participants agreed that people’s reactions towards autism depend on their knowledge of ASD, the severity of the symptoms and the personal characteristics of both the person with ASD and the person who is reacting to him or her. All participants had faced ignorance about autism (e.g. expecting people with ASD to be always very smart or not understanding their aggressive reactions towards their parents). Only one parent stated that she had never faced a negative reaction towards her daughter, all other seven participants reported negative experiences (e.g. rejection towards youth with ASD for being considered too childish). Although three parents complained about the lack of effective integration policies, none of them complained about the schools. Regarding the parenting of children with ASD, all participants confirmed the traditional negative reactions to the diagnosis of ASD: the pain, the grieving, the uncertainties etc. Seven parents were proud of the progresses made by their children and felt they had learned to see life in another way. One father could not see any upside of having a boy with ASD, although his son was very loving, he would trade it for not having ASD. Regarding their couple relationships, all participants highlighted their union to face the difficulties and how their relationships had been hurt. Four mothers and two fathers stated that their child’s education was the mother’s sole responsibility. Also, three parents said the researcher should interview their spouses because: a) one mother wanted to know what her husband thought, b) one father thought his wife had more information than him and c) one father wanted his wife to unburden. Further research is needed to confirm these results, but it seems that there is still much to be improved regarding social acceptance of people with ASD and their parents’ coping resources.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. Gibson, K. A. (2014). Appreciating the world of autism through the lens of video interaction guidance: an exploration of a parent’s perceptions, experiences and emerging narratives on autism. Disability & Society, 29(4), 568-582. Hines, M., Balandin, S. & Togher, L. (2012). Buried by autism: older parents’ perceptions of autism. Autism, 16(1), 15-26. Jones, S. C., & Harwood, V. (2009). Representations of autism in Australian print media. Disability & Society, 24(1), 5-18. Kim, H. U. (2012). Autism across cultures: rethinking autism. Disability & Society, 27(4), 535-545. Langan, M. (2011). Parental voices and controversies in autism. Disability & Society, 26(2), 193-205. López, F. P., & Torres, A. A. (2010). Familia y discapacidad. Una perspectiva teórico-aplicada del Enfoque Centrado en la Familia para promover la autodeterminación. Electronic Journal of Research in Educational Psychology, 8(22), 1339-1362. Mire, S. S., Gealy, W., Kubiszyn, T., Burridge, A. B. & Goin-Kochel, R. P. (2017). Parent perceptions about autism spectrum disorder influence treatment choices. Focus on Autism and Other Developmental Disabilities, 32(4), 305-318. Molteni, P. & Maggiolini, S. (2015). Parents’ perspectives towards the diagnosis of autism: an Italian case study research. Journal of Child and Family Studies, 24, 1088-1096. Potter, C. A. (2016). ‘I accept my son for who he is – he has incredible character and personality’: fathers’ positive experiences or parenting children with autism. Disability & Society, 31(7), 948-965. Quilendrino, M. I. O., Castor, M. A. R., Mendoza, N. R. N. P., Vea, J. R. & Castillo-Carandang, N. T. (2015). Parents’ perceptions of autism and their health-seeking behaviors. Clinical Epidemiology and Global Health, 3, S10-S15 Penrod, J., Preston, D. B., Cain, R. E., & Starks, M. T. (2003). A discussion of chain referral as a method of sampling hard-to-reach populations. Journal of Transcultural Nursing, 14(2), 100-107. 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 Family Studies, 21(2), 311-319. Vasilopoulou, E. & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: a systematic review. Research in Autism Spectrum Disorders, 23, 36-49. Waltz, M. (2012). Images and narratives of autism within charity discourses. Disability & Society, 27(2), 219-233.
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