Children and youth with autism: impact on their parents and family dynamics

Context: Autism is thought to be a neurodevelopmental disorder. It has a severe impact on behaviour, communication and social interaction and is a source of worry for parents. Objective: To ascertain the needs of the parents of children and young people with autism and relate these needs to functionality, family coping strategies, emotional state and satisfaction with life. Methods: A correlation study was undertaken on a non-probabilistic sample of 50 parents of autistic children and young people. The parents completed a questionnaire consisting of sociodemographic data, the Family Needs Survey (FNS); Family Adaptability and Cohesion Evaluation Scales, (FACES-III), Depression Anxiety and Stress Scales (DASS), Family Crisis Oriented Personal Scales (F-COPES) and the Personal Wellbeing Index (PWI). Descriptive and inferential statistics were used for data analysis. Results: More information on the services (medical and social security) from which their child could benefit was the need most often mentioned by parents. The parents with the most needs exhibited the most negative emotional states; they used more strategies to reframe and acquire social assistance - intimate relations. On average parents reported a level of personal wellbeing above the median, but below that found for the average Portuguese population. Conclusion: Being the parent of a child or young person with autism signifies having unmet needs and this may have implications at both personal and family level. It is suggested that resources should be made available in the social, educational and health areas designed to achieve planned and inclusive services capable of responding to the specific needs of these families.