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O Autismo é uma doença do foro neurológico que afeta o funcionamento do cérebro, criando problemas relacionados com sentimentos, pensamentos, linguagem e dificuldade de interação social. É uma doença difícil de diagnosticar e para a qual ainda não existe cura.
Por vezes, os investigadores focam-se nos doentes em si acabando por esquecer a família e quem os rodeia. Por esse motivo achei importante tentar compreender as experiências subjetivas dos pais de crianças autistas enquanto cuidadores informais.
Num sentido diferente do que foi avançado por investigações quer analisaram o estigma associado a certas doenças, os autistas não sentem o estigma nem o rótulo, porém as suas famílias sim. Sobre elas recaí o peso de viver com uma criança “diferente”, evitando assim frequentar sítios público e reformular as suas rotinas.
Os apoios existentes não são muitos, e nem todos têm o mesmo acesso a eles. Financeiramente, a Segurança Social dispõe de alguns subsídios a que os pais se podem candidatar. A nível educacional, existem escolas com Unidades de Ensino Estruturado (UEE), contudo, esta oferta não existe em todas as escolas nem em todos os distritos. A nível terapêutico existe um conjunto de serviços, mas, de novo, nem todos têm as mesmas probabilidades de beneficiar deles, pois há crianças que não fazem as terapias adequadas à sua condição por elas não existirem na sua zona de residência. Por fim, existem ainda associações de apoio para crianças autistas, mas estas não se encontram próximas das localidades de residência dos entrevistados. A desigualdade no acesso a serviços e recursos é também um aspeto que marca a experiência destes(as) pais/mães, sendo que a maioria não tem condições económicas para procurar respostas alternativas.
A nível de apoio para os próprios pais estes não o procuram por acharem desnecessário, sendo a família o principal pilar de apoio, quando necessitam. Não se relacionam com pais em situações semelhantes devido à falta de confiança e vivem isolados socialmente.
Viver com uma criança autista interferiu no plano de ter mais filhos, com o receio que o próximo fosse igualmente autista, ou com receio da reação das pessoas, pela experiência que já tinham vivido com o filho.
A cura da doença seria o melhor que poderia acontecer aos pais das crianças afirmando que melhoraria não só a vida dos seus filhos, mas também a deles.
Autism is a neurological disorder that affects the functioning of the brain, creating problems related with feelings, thoughts, language and social interaction. It is a difficult disease to diagnose and for which there is no cure yet. Sometimes, researchers focus on patients themselves eventually, forgetting family and those who surround them. For this reason I felt that it was important to try to understand the subjective experiences of parents of autistic children, as informal caregivers. In another way, the autistics don’t feel the stigma or the label, but their families do. Above them falls the weight of living with a “different” child, avoiding public places and revamping their routines. The existing social supports are not many, and not all have the same access to them. Financially, Social Security offers some benefits that parents can apply to. On the educational level, there are schools with structured teaching units (in Portuguese: Unidades de Ensino Estruturado - UEE), however, this provision does not exist in all schools neither in all districts. On the therapeutic level there is a set of services, but again, not everyone has the same chance of benefit, because there are children who don’t do the appropriate therapies associated to their condition because those therapies are not available in their areas of residence. Finally, there are also associations of support for autistic children, but these are not located close to the places of residence of respondents. The unequal access to services and resources is also an aspect that marks parents’ experience, most of them don't have economic conditions to look for alternative answers. Parents don’t look for support for themselves because they find it unnecessary, being their family the main pillar of support, when they need it. They do not relate to parents in similar situations due to a lack of confidence and live socially isolated. Living with an autistic child broached the plan to have more children, due to the fear that the next one could also be autistic, or being afraid of people’s reaction, because of experience they lived with the first child. The cure of the disease would be the best thing that could happens to these children’s parents, stating that it would not only improve the lives of their children, but also theirs.
Autism is a neurological disorder that affects the functioning of the brain, creating problems related with feelings, thoughts, language and social interaction. It is a difficult disease to diagnose and for which there is no cure yet. Sometimes, researchers focus on patients themselves eventually, forgetting family and those who surround them. For this reason I felt that it was important to try to understand the subjective experiences of parents of autistic children, as informal caregivers. In another way, the autistics don’t feel the stigma or the label, but their families do. Above them falls the weight of living with a “different” child, avoiding public places and revamping their routines. The existing social supports are not many, and not all have the same access to them. Financially, Social Security offers some benefits that parents can apply to. On the educational level, there are schools with structured teaching units (in Portuguese: Unidades de Ensino Estruturado - UEE), however, this provision does not exist in all schools neither in all districts. On the therapeutic level there is a set of services, but again, not everyone has the same chance of benefit, because there are children who don’t do the appropriate therapies associated to their condition because those therapies are not available in their areas of residence. Finally, there are also associations of support for autistic children, but these are not located close to the places of residence of respondents. The unequal access to services and resources is also an aspect that marks parents’ experience, most of them don't have economic conditions to look for alternative answers. Parents don’t look for support for themselves because they find it unnecessary, being their family the main pillar of support, when they need it. They do not relate to parents in similar situations due to a lack of confidence and live socially isolated. Living with an autistic child broached the plan to have more children, due to the fear that the next one could also be autistic, or being afraid of people’s reaction, because of experience they lived with the first child. The cure of the disease would be the best thing that could happens to these children’s parents, stating that it would not only improve the lives of their children, but also theirs.
Description
Keywords
Apoios Sociais Autismo Diagnóstico Estigma Estigma de Cortesia Rótulo Rotura Biográfica Unidades de Ensino Estruturado