Tėvų, auginančių autizmą turinčius vaikus, požiūrio į vaiko ateitį naratyvas

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Mokslo publikacijos / Scientific publications
Document Type:
Straipsnis / Article
Lietuvių kalba / Lithuanian
Tėvų, auginančių autizmą turinčius vaikus, požiūrio į vaiko ateitį naratyvas
Alternative Title:
Narrative of attitude of parents towards future of their children with autism
In the Journal:
Tiltai [Bridges] [Brücken]. 2018, Nr. 1 (79), p. 125-139
Reikšminiai žodžiai: Autizmas; Negalia; Naratyvas; Autism; Disability; Narrative.
Autizmas; Diskriminacija. Konfliktai / Discrimination. Conflict; Naratyvas; Negalia. Neįgalieji / Disabilities. Disabled persons; Specialusis ugdymas / Special education; Vaikai / Children.
Summary / Abstract:

LTJaunuoliai, turintys negalių, yra viena jautriausių visuomenės grupių, nes patiria diskriminaciją dėl neįgalumo stereotipų, segregaciją darbo rinkoje ir švietimo sistemoje. Tai pripažįsta tarptautinės žmogaus teisių ir negalės srityje veikiančios organizacijos, ši problema įvardyta negalią turinčių asmenų teises ginančiuose dokumentuose, atsiskleidžia Lietuvos ir užsienio mokslininkų tyrimuose. Autizmo sutrikimas laikomas vienu labiausiai komplikuotų vaiko raidos sutrikimų, paveikiantis ne tik jo intelektinius, socialinius gebėjimus, bet ir visos šeimos gyvenimą. Šiame straipsnyje siekiama atskleisti tėvų, auginančių autizmą turinčius vaikus, požiūrį į vaikų ateitį naratyvo pasakojimuose. Teorinėje straipsnio dalyje nagrinėjami autizmo teoriniai aspektai, diagnostikos ypatumai. Empirinėje dalyje, atlikus kokybinį naratyvo tyrimą, nustatyti tėvų, auginančių autizmą turinčius vaikus, požiūrio į vaikų ateitį ypatumai. [Iš leidinio]

ENYoung people with disabilities are one of the most sensitive groups of society because they are being by stereotypes of disability, prevalent in the labor market and education. [...] The theoretical part of the article examines disabilities and the conceptual basics of autism. The empirical part is compliant with a provision that a human life can be understood by analysing one’s experience, opinions, worldview and context. [...] The object of the research – narratives of the parents’ attitude towards the future of their autistic children. The purpose is to reveal the parents’ attitude towards the future of their autistic children in narrative stories. In order to reveal the parents’ subjective experience, a qualitative narrative research was chosen. The article uses this narrative theory: Narrative means “to account” and is derived from the term gno, meaning to know. [...] The theoretical part of the article examines disabilities, conceptual basics of autism. Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect person’s ability to communicate, and interact with others. [...] There is no known single cause of autism, but increased awareness and earlydiagnosis / intervention and access to appropriate services / support lead to significantly improved outcomes. Some of the behaviors associated with autism include delayed learning of language; difficulty making eyecontact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills’ and sensory sensitivities. [...] Results: The study involved four fathers that each are raising a child with a diagnosis of autism. Comparing the narratives of the participants in the study, the interrelated components emerged, which constitute a narrative of the parental attitude towards the child’s future.Conclusions: The spreading of autism on a global scale, affecting more and more people without any restrictions on gender, race, social layer or other human identifications, creates new theories and promotes the scientific research of the spreading of autism. Autism is an interdisciplinary challenge that requires a wide range of research. Reconstructing the narrative of parents who raise children with autism does not contradict the factors found in scientific literature, they are expanded by individual experiences. Parents’ stories revealed the interrelated components that make up the narrative of the parental attitudes towards the child’s future: near future, additional education, education, and the farther future. The narrative of the near future revealed that parental narratives are dominated by the three components of the narrative: the child’s social relationships (parents’ expectations focus on the desire for the child to interact with peers and acquire social skills), the acquisition of minimal academic knowledge (parents are deeply experiencing their child’s failures in elementary reading, writing skills, calculation skills), childhood diagnosis (most feared complications, diagnosis of weight loss).The narrative of supplementary education highlighted the limitations of access to non-formal education for children with autism. Parental stories reveal that for a child with autism disorder, the involvement of parents in the educational process and the opportunity to develop not only in school, but also in non-formal education institutions is important. The lack of specific education curricula for the development of children with autism is also highlighted in the reality of education, and professionals working in the form of non-formal, alternative education programs that are paid have a significant impact on family budgets. The narrative of education revealed that parents understand the meaning of education and want children to pursue a vocational education. The current situation is not satisfactory for parents, they expect inclination for the society to change. Further narrative of the future reflects the parents’ expectations regarding the independent lives of children, their ability to care for themselves and the ability to create their own families. It turned out that parents’ narratives about each component are accompanied by anxiety and feelings of fear, but in all stories there is also an aspect of hope. With paramount expectations parents are striving for recognition in society, the development of the educational system, the progress of medicine and diagnostics. The research revealed the social and emotional significance of the family, while actualizing the fact that the child’s disability affects the social participation of the whole family and determines the importance of complex care for the whole family. [From the publication]

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2019-11-18 09:47:31
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