Quality of life of autistic children's caretakers

OBJETIVO: Avaliar a qualidade de vida dos cuidadores de crianças incluídas no espectro autístico e determinar se há algum tipo de relação entre os diferentes domínios e aspectos demográficos como escolaridade e classe social. MÉTODOS: Foram sujeitos 150 cuidadores de crianças pertencentes ao espectro autístico, com idades entre 24 e 65 anos, os quais responderam as questões feitas por meio do instrumento de avaliação da qualidade de vida WHOQOL-bref, elaborado pelo Programa de Saúde Mental da Organização Mundial de Saúde, composto de 26 questões, divididas em quatro domínios (Físico, Psicológico, Relações Sociais, e Meio Ambiente). RESULTADOS: Os dados revelaram diferenças significantes entre todos os domínios. O único domínio do questionário de qualidade de vida que mostrou correlação estatisticamente significante com todas as variáveis demográficas foi o domínio Meio Ambiente. CONCLUSÃO: Fatores como acesso a lazer, saúde e transporte têm papel importante na qualidade de vida percebida por pais de crianças do espectro autístico.PURPOSE: To assess the quality of life of autistic spectrum children's caretakers and to determine whether there is some kind of relation among the different domains and demographic aspects such as educational and social level. METHODS: Subjects were 150 caretakers of children within the autistic spectrum, with ages ranging from 24 to 65 years, who answered to the WHOQOL-bref protocol, proposed by the Mental Health Program of the World Health Organization, which has 26 questions divided into four domains (Physical, Psychological, Social Relations, and Environment). RESULTS: Data revealed significant differences among all the domains. The only domain of the quality of life questionnaire that had statistically significant correlations with all demographic variables was Environment. CONCLUSION: Factors such as access to leisure, health and transportation play an important role in the quality of life realized by parents of autistic spectrum children.Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP

Remote Speech-Language Intervention, with the Participation of Parents of Children with Autism

The question about the possibility of identifying the best therapeutic approach for children with autism spectrum disorder (ASD) has also been discussed in the literature. The intervention should be individualized, in order to involve the current level of development of the child and to identify the profile of the facilities and difficulties of each child. The families are constantly involved in complex and changeable context and are aware of the importance of access and participation to the treatment chosen, since that service delays can directly affect efficacy. In general, studies on language acquisition and development in autism focus on the child’s communication, and some analyze the mother seeking to understand how the role of parents and caregivers influences the communication of the children with autism. Observing the importance of the active inclusion of parents in the speech and language therapy of children with ASD, a Distance Speech Therapy Intervention project, was developed that would allow language stimulation of a greater number of children and adolescents with autism

Social support and quality of life in families with children of the autism spectrum

Introdução: O autismo, classificado como Transtorno Global do Desenvolvimento, é descrito pela American Psychiatric Association como um complexo conjunto de inabilidades, as quais afetam a comunicação, o comportamento e a interação social dos indivíduos. As evidências sugeridas, de que os pais das crianças autistas tenham um risco consideravelmente aumentado de experimentar dificuldades psicológicas, estão totalmente relacionadas à ajuda que estes recebem. Outro fato importante que se dá com a associação entre o comportamento da criança e a aflição materna é a situação econômica enfrentada pelas famílias e pelos níveis baixos de suporte recebido que, quando adequado, pode proporcionar melhor adaptação e aceitação. Objetivos: verificar o suporte social formal e informal disponibilizado para as famílias com crianças e adolescentes com diagnósticos inseridos no espectro autístico nas situações de atendimento ambulatorial e institucional e a qualidade de vida informada/percebida por elas. Método: Foram sujeitos, 150 cuidadores de crianças/adolescentes incluídos no espectro autístico, com idade entre 24 e 65 anos, os quais responderam a um questionário referente ao suporte social recebido por eles e às questões feitas através do instrumento de avaliação da qualidade de vida WHOQOL-brief, proposto pelo Programa de Saúde Mental da Organização Mundial de Saúde. Resultados: A categoria de participantes mais satisfeitos em relação ao suporte social recebido não se difere por questões econômicas ou sociais, mas sim pelo que referem em relação à qualidade de vida.Introduction: The autism, classified as a Pervasive Developmental Disorder, is described by the American Psychiatric Association as a complex set of inabilities that include communication, behavior and social interaction of the affected individuals. Evidence suggest that the parents of autistic individuals are at considerably more risk of experiencing psychological impairments that are completely related to the assistance they receive. Another important issue to the association between the childs behavior and mother discomfort is the economic stress faced by the families and the low amount of support provided. This support, when adequate, may allow better adaptation and acceptance. Purposes: to assess the formal and informal support provided to families with children and adolescents of the autism spectrum that are receiving institutional or clinical services and verify the reposted Quality of Life. Method: subjects were 150 caretakers of children and adolescents of the autism spectrum, with ages between 24 and 65 years. They answered a questionnaire about the social support available to them and to the World Health Organization Quality of Life Brief questionnaire. Results: The group of participants that report the better social support is also the group with better Quality of Life

Variants autism spectrum identification

O termo \"Distúrbio do Espectro do Autismo\" reflete uma tendência a valorizar a grande variedade clínica observada na prática diária e a possibilidade de existirem outros subtipos da patologia. A natureza clínica dos critérios de diagnóstico e a falta de instrumentos definidos e acessíveis para esse processo, em conjunto com a preocupação em não \"rotular\" a criança, contribuem para o atraso no diagnóstico. Para presente pesquisa, dividida em três estudos, foi utilizado o instrumento Differential Assessment of Autism and Other Developmental Disorders (DAADD) e traz como objetivos identificar as variações do Espectro do Autismo das crianças e adolescentes em atendimento no Laboratório de Investigação Fonoaudiológica nos Distúrbios do Espectro do Autismo da Faculdade de Medicina da Universidade de São Paulo, identificar os comportamentos das variações do Espectro do Autismo o instrumento com o Autism Behavior Checklist e por fim a partir dele, propor um instrumento reduzido. As análises permitem dizer que, quanto mais nova a criança, mais fácil se dá a diferenciação entre estar incluída no Espectro do Autismo e não estar, e quanto maior a idade da criança mais o DAADD identifica o diagnóstico diferencial dentro dos Distúrbios do Espectro do Autismo. O instrumento mostrou-se eficiente para o diagnóstico no espectro do autismo na comparação dos resultados apresentados no Autism Behavior Checklist pelo mesmo grupo de sujeitos, uma vez que o diagnóstico de Autismo foi o mais prevalente na classificação \"alta probabilidade\" do ABC para as idades de 4 a 8 anos. Outros estudos, com outros distúrbios do desenvolvimento (como Retardo Mental e Paralisia Cerebral) podem confirmar a utilidade e a especificidade do DAADD e de sua versão reduzidaThe term \"autism spectrum disorder\" reflects a larger clinical variability observed in daily practice and the possibility of other subtypes of the disease. The clinical diagnostic criteria and the lack of accessible and defined instruments with the concern to not \"label\" the child, contribute to the delay in diagnosis. To this study, divided into three studies, we used the instrument Differential Assessment of Autism and Other Developmental Disorders (DAADD) and has as objective to identify variations Autism Spectrum children and adolescents in care at the Laboratory of Speech Spectrum Disorders Autism, Faculty of Medicine, University of São Paulo, identify behaviors variations Autism Spectrum instrument with the Autism Behavior Checklist (ABC) and finally, propose an instrument reduced. Analyses showed that for the younger children was easier to differentiate between being included in the Autism Spectrum and not being, and as the age increases the DAADD is more effective to give the differential diagnosis in the Autism Spectrum Disorders . The instrument proved to be efficient for the diagnosis on the autism spectrum in comparing the results presented in the ABC by the same group of subjects, once the diagnosis of autism was more prevalent in ranking \'high probability\' ABC for ages 4-8 years. Other studies with other developmental disorders (such as mental retardation and cerebral paralysis) may confirm the use and specificity of DAADD and its reduced versio

Remote follow-up to speech-language intervention for children with Autism Spectrum Disorders (ASD): parents’ feedback regarding structured activities

ABSTRACT Purpose This paper aims to present the first descriptions of experiences of parents and caretakers of children with Autism Spectrum Disorders (ASD) enrolled as mediators in a structured program of speech-language intervention with remote follow-up. Methods Research with focus on speech-language intervention for children with ASD was carried out with remote follow-up. Forty parents were instructed to perform daily activities focused on communication and interaction with their children, at home, for a period of six weeks. Parents and caretakers were questioned about the experience and by means of a structured questionnaire. Results Only 40% of the parents/caretakers conducted the activities proposed every day. Difficulties were reported by 60% of the parents/caretakers. Behavioral problems were also reported as reasons for the difficulties to conduct the activities proposed. Conclusion the importance of parents who provide detailed information about the child’s development, discuss doubts and exchange experiences for the development of intervention programs that include families

Comparing the results of DAADD and ABC of children included in Autism Spectrum Disorders

PURPOSE: To verify if there are characteristic behaviors of the different diagnosis included in the autism spectrum according to the Differential Assessment of Autism and Other Developmental Disorders (DAADD) and to the Autism Behavior Checklist (ABC). METHOD: Participants were 45 individuals and their respective speech-language therapists. All therapists are graduate students working with the children for at least 1 year. This time was considered sufficient to the therapists to have the information required by the DAADD questionnaire. It is comprised by 3 protocols specifically designed to children with 2 to 4 years, 4 to 6 years and 6 to 8 years, the same criteria used to separate the research groups, G1, G2 and G3, respectively. Data referring to the ABC were retrieved from the subject's files at the Laboratório de Investigação Fonoaudiológica nos Distúrbios do Espectro do Autismo (Research Laboratory on Language Disorders in the Autism Spectrum) of the School of Medicine, Universidade de São Paulo, where it is routinely applied during the annual assessment. RESULTS: Answers to the different areas of DAADD are similar to the different areas of ABC. These data show data the diagnosis by DAADD is easier in older children. Although there is no significant difference, the large occurrence of Rett's syndrome diagnosis according to the DAADD was associated to higher risk for autism according to the ABC in G1. With increasing age this tendency decreases and either in G2 and G3 Autism is the most frequent diagnosis. CONCLUSION: Although the results of both questionnaires tend to agree more with increasing age, the DAADD is more sensitive in the different ages while the ABC if more specific only to older children

Estudo longitudinal da terapia de linguagem de 142 crianças e adolescentes com distúrbios do espectro do autismo

Os últimos 25 anos proporcionaram mudanças significativas na atuação fonoaudiológica dirigida aos Distúrbios do Espectro do Autismo em todo o mundo. Elas envolvem os critérios diagnósticos, a metodologia de pesquisas e a sistematização de dados de processos diagnósticos e de intervenção. Nesse contexto, os primeiros resultados do uso de um sistema de registros utilizado num serviço especializado reforçam a importância da inclusão das informações referentes a cada processo de intervenção em sistemas confiáveis e acessíveis, garantindo a associação de informações, e evidenciam as possibilidades de estudos com grandes populações, o que não é comum na literatura da área