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Ethical aspects of care for a child with autism spectrum disorder (communication with parents, grandparents, etc.)
PLOCKOVÁ, Lenka
The Diploma Thesis addresses Ethical aspects of care of children with autism spectrum disorders (communication with parents, grandparents, etc.). The research results revealed that parents usually noticed their children?s handicap during the first three years of the children?s life, when children started to show various problems associated with the autism spectrum disorders. Parents agreed that, at the time, the most difficult thing was to cope with the handicap of their children and the symptoms of such handicap. Most parents also stated that it was very difficult to cope with the information about the diagnosis; this process took them a long time. According to parents, the following would be most helpful: information from specialists, contact with parents of children with similar handicaps, support, help of others in their environment, hope, contact to an organization that could help them/give them practical advice and instructions with regard to communication with children and their development. Parents of children with the handicap find contact with parents of children with similar handicaps very important. The following problems associated with the autism spectrum disorders are viewed as the most significant by parents: problems with communication, inability of socialization, stereotype behavior, hyperactivity, possible self-harm, mood changes, but also impenetrability of the world of children with autism spectrum disorders. According to some parents, the diagnostics of their children was not in order. Their children?s autism was not recognized by physicians and parents had to arrange a specialized diagnostic examination on their own. In case of some children, autism spectrum disorders were recognized by a general practitioner for children and youth, who recommended a visit to a child psychiatrist, where diagnostics took place. In these cases, parents were not given any opportunity to give questions to physicians and, moreover, they did not receive much information about the handicap of their children. Parents had to look for important information on the internet or in specialized literature. Furthermore, autism spectrum disorders were not sufficiently explained by physicians to some parents. Parents received information about the consequences of this type of handicap from a special pedagogue, psychologist, or worker of an organization that provides social services to children with autism spectrum disorders and their parents. Moreover, some parents were not given any contact to organizations providing care or consulting to children with this type of handicap. Most parents view the approach of physicians to their children as negative. Children with autism spectrum disorders most frequently visit a child psychiatrist; some children also see a child neurologist. According to parents, physicians only communicate with them and do not focus on their children at all. However, only one half of parents informed their physicians about the way they can communicate with their children. Parents usually prepare for the doctor?s appointment using photographs and pictures that illustrate the visit or its individual steps. A hospitalization of children with the autism spectrum disorder usually took place with their mothers, who rate it as standard, with no problems to address during such hospitalization. Health professionals mostly communicated with mothers and tried to respect the child?s habits.
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