RESUMO
Introduction: Adequate education, employment, and services for autistic individuals contribute significantly to their and their parents' quality of life. Services and support for adults are dramatically more limited than those for children. The main purpose of this study was to explore how parents perceive factors supporting/hindering access to services, and how they assess the quality of services. Methods: Qualitative data provided by 12 parents via a semi-structured interview with a broader focus on parental quality of life and its factors were analyzed. Their autistic children were between 20 and 34 years of age. A thematic analysis was performed on parts of the narratives on their adult periods of life. Results: A complex pattern of parental perception of supportive and hampering factors influencing access to services unfolded. The sparsity of services/activities and reliable information on them made the space for autonomous decisions on service take highly limited. Parents have modest expectations on quality of services, evaluating them along two key aspects: a safe, positive atmosphere, and communication between parents and professionals. Other aspects of individualized autism-specific support were not or just rarely mentioned. Discussion: Parents perceive themselves as investing a lot of effort and resources in getting some form of regular service and/or activity for their adult child. However, these parental efforts often fail, their child becoming inactive, and dependent on their presence. This suggests system-level problems with services for autistic adults in Hungary, with literature showing it is not specific to this country.
RESUMO
PURPOSE: Parents of autistic individuals have been known to have a lower overall quality of life (QQL) than those of typically developing children. We present the first Hungarian large-sample study whose objective was to explore the differences in QOL between parents of autistic individuals (AS) and those of neurotypical (NT) persons. METHODS: Based on the ABCX model we developed a questionnaire comprising standardized scales to characterize the life of parents involved. Our data came from parents of 842 individuals (ASD = 521, NT = 321) between 0 and 49 years. Battery deployed standardized instruments to examine quality of life (WHO-QQL BREF and Quality of Life in Autism questionnaire, QOLA). We assessed the families' socio-economic/demographic characteristics, parents' psychological well-being, the autistic/neurotypical individuals' characteristics, and the interventions. RESULTS: Our data showed significantly lower QOL in parents of autistic individuals in all domains of questionnaires. We analyzed 20 relevant factors to uncover the predictors of parental QOL. We confirmed the existence of most but not all predictors present in earlier literature and identified intervention-related predictors. CONCLUSION: Our study confirms the importance of supporting parents in their role, and of providing health and social supports that focus on quality of life, in addition to child care.
