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      CLÍNICA E PESQUISA DO AUTISMO: OLHAR ÉTICO PARA O SOFRIMENTO DA FAMÍLIA Translated title: AUTISM CLINIC AND RESEARCH: ETHICAL LOOK AT FAMILY SUFFERING Translated title: CLÍNICA E INVESTIGACIÓN DEL AUTISMO: MIRADA ÉTICA AL SUFRIMIENTO DE LA FAMILIA

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          Abstract

          RESUMO: No presente artigo, temos como objetivo discutir, do ponto de vista da ética, alguns impactos que o autismo pode ter nas relações familiares. Para tanto, recorremos a uma revisão bibliográfica acerca de possíveis efeitos do autismo nas relações familiares e também à apresentação de recortes autobiográficos de famílias de crianças com Transtorno do Espectro do Autismo (TEA). A reflexão desenvolvida ao longo do artigo leva a pensar sobre como a criança com TEA, com suas singularidades, pode vir a impactar as relações familiares e sobre como a subjetividade da criança afeta a família ao mesmo tempo em que é afetada por ela. Dessa forma, esperamos alargar e aprofundar o horizonte das pesquisas que enfocam este tema e fornecer novos elementos para a escuta e cuidado dos pais e irmãos na clínica do autismo.

          Translated abstract

          ABSTRACT: In this article, we aim to discuss, from a standpoint of the field of Ethics, some impacts that autism may have on the family. We made a literature review about possible effects of autism on family relationships and autobiographical texts of relatives of people with Autism Spectrum Disorder (ASD). We discuss how people with ASD, with their singularities, may impact family relationships, and how the person’s subjectivity simultaneously impacts and is impacted by the family. In this way, we hope to broaden and deepen the horizon of researches that focus on such issues providing new elements for listening and caring for parents and siblings in autism-related treatment.

          Translated abstract

          RESUMEN: En este artículo, nuestro objetivo es discutir, desde el punto de vista de la ética, algunos impactos que el autismo puede tener en las relaciones familiares. Para habilitar esta discusión, recurrimos a una revisión de la literatura sobre los posibles efectos del autismo en las relaciones familiares y también a la presentación de recortes autobiográficos de familias de niños con Trastorno del Espectro Autista (TEA). La reflexión desarrollada a lo largo del artículo lleva a pensar cómo el niño con TEA, con sus singularidades, puede impactar las relaciones familiares, reflexionando sobre cómo la subjetividad del niño afecta a la familia al mismo tiempo que se ve afectada por ella. De esta manera, esperamos ampliar y profundizar el horizonte de investigación sobre este tema y proporcionar nuevos elementos para la escucha y el cuidado con a los padres y hermanos en la clínica de autismo.

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          Most cited references29

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          The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning.

          The article discusses a study conducted to investigate the impact of children with high-functioning autism (HFA) on parental stress, sibling adjustment, and family functioning; the study involves a sample of parents of 15 children with HFA and parents of 15 matched control children who completed questionnaires measuring the dependent variables. The results indicate parents of children with HFA experience significantly more parenting stress than parents of children with no psychological disorder, which was found to be directly related to characteristics of the children. The study further shows that the higher intellectual functioning in children with HFA does not compensate for the stress associated with parenting children with autism spectrum disorders. Because the intervention efforts directed at children with HFA will not eliminate the child's primary symptoms, treatment programs may need to address parental stress, which in turn will help optimize treatment outcome for the child and the family.
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            Depression and social adjustment in siblings of boys with autism.

            N Gold (1993)
            Compared 22 siblings of autistic boys and 34 other siblings on measures of depression, social adjustment, and the amount of child care and domestic responsibility the siblings carry within the family. The relationship between sibling gender, age, birth order, qualities of the boy with autism, and family characteristics, and siblings' scores on the above measures were examined. Results of this research showed that siblings of autistic boys scored significantly higher on depression than the comparison group, but not on problems of social adjustment. There were no statistically significant gender differences; however, different gender-related patterns emerged on the correlates which may be of theoretical significance for future studies.
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              Estresse e relações familiares na perspectiva de irmãos de indivíduos com transtornos globais do desenvolvimento

              Os Transtornos Globais do Desenvolvimento (TGD) caracterizam-se pelo comprometimento da interação social, pelo uso estereotipado e repetitivo da linguagem e pela presença de comportamentos repetitivos com interesses restritos. A maioria dos estudos nessa área focaliza o impacto dos TGD nos pais, ao passo que pouca atenção tem sido dada ao impacto nos irmãos. O presente estudo objetivou investigar a presença de indicadores de estresse e a qualidade das relações familiares em irmãos de indivíduos com e sem TGD. Participaram 62 crianças e adolescentes com idades entre 8 e 18 anos. Os resultados revelaram a ausência de indicadores de estresse nos grupos investigados. Os dados corroboram as premissas do metamodelo de Adaptação da Família à Doença Crônica, ao demonstrar que a presença de um membro com TGD na família não representa, obrigatoriamente, um evento adverso para os irmãos, desde que haja qualidade nas relações familiares e uma rede de apoio.
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                Author and article information

                Journal
                pe
                Psicologia em Estudo
                Psicol. Estud.
                Universidade Estadual de Maringá (Maringá, PR, Brazil )
                1413-7372
                1807-0329
                2021
                : 26
                : e48763
                Affiliations
                [3] São Paulo São Paulo orgnameUniversidade de São Paulo Brazil
                [1] São Paulo São Paulo orgnameUniversidade de São Paulo Brazil
                [2] São Paulo SP orgnameInstituto Sedes Sapientiae Brasil
                Article
                S1413-73722021000100209 S1413-7372(21)02600000209
                10.4025/psicolestud.v26i0.48763
                56334ffd-fbd1-4ccd-b85a-d1d04c3ed6f9

                This work is licensed under a Creative Commons Attribution 4.0 International License.

                History
                : 16 July 2019
                : 06 July 2020
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 30, Pages: 0
                Product

                SciELO Brazil

                Categories
                Artigos

                family,ethics,Autismo,familia,ética,família,Autism
                family, ethics, Autismo, familia, ética, família, Autism

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