Influences on Parent Perceptions of Autism Severity

Abstract

Research in autism spectrum disorder (ASD) often relies on parent report for describing behavior and symptoms. Psychometric studies in assessment have supported the utility of parent report; however, cultural and external factors may influence ratings of severity. The purpose of this study was to investigate if parent characteristics influence the severity rating of ASD over and above child characteristics. Using the 2009–2010 National Survey of Children With Special Health Care Needs (NS-CSHCN), we examined 3,037 parents who answered questions about their child’s ASD symptoms. We used hierarchical multiple regression to assess child-level variables (age, developmental delay, intellectual disability, and number of co-occurring emotional or behavioral conditions) and family-level variables (education, income, and language). We also performed mediation analyses to examine the relationship between language and severity ratings. Parents rated their child’s ASD as mild (52.3%), moderate (36%), or severe (11.8%). Parent-level variables explained a significant amount of variance over and above child-level variables. Several different stressors and challenges for English Language Learner parents mediated the relationship between language and severe ASD ratings. When asking parents to evaluate a child’s ASD symptoms, clinicians and researchers must consider the influence of sociocultural factors on ratings. In addition, because parent perception can drive help-seeking behaviors, professionals need to understand that there may be differences across sociocultural groups. Future research should investigate which sociocultural perceptions or expectations may be affecting parent ratings of ASD severity.

Parenting of Children with Autism Spectrum Disorder: A Grounded Theory Study

“…In this theoretical construction, the strategies used, and the parental responses, to deal with parenting are the main pillars that both support and sometimes mediate the significant parental experience. They are interconnected human actions, which result from a dynamism presented by interactions and strategies, with the purpose of empowering parents in achieving their parental roles in the contexts that they experience [ 13 , 16 , 19 , 20 ].…”

“…The parents’ strategies to deal with parenting and the specificity of ASD, as well as self-restructuring, have various dimensions: cognitive, related to the learning of new skills, the redefinition of the parental role and decision making; relational, where family support and friends stand out; social, where emphasis is placed on the child and family support associations, health services, schools, and society; other components that were also highlighted by the parents refer to the operational field, where involvement in care, reorganization of habits, sharing of tasks and the reconciliation of roles stand out. All these elements contribute in order to favor the transformation of the concepts of life, beliefs, expectations, relationships, and day-to-day living [ 5 , 14 , 16 , 19 , 20 , 21 ].…”