Family Experiences of Auditory Hypersensitivity in ASD
Objectives: To provide insight into the experiences and behaviors of individuals with ASD and auditory sensitivity, and better understand their needs and concerns and those of their families.
Methods: Parents of individuals with ASD (n=90) were recruited to participate in a 54-item survey, adapted from the Auditory Sensitivity and Child Safety Questionnaire (Law et al., 2016). The survey probed the individual’s past and current levels of auditory sensitivity and how this issue affects the individual’s behavior and family life. A follow-up focus group interview was conducted with a subset of parents (n=7). The focus group discussed the nature of challenging sounds and situations, behaviors, negative effects on family activities and loss of opportunities, safety issues and effectiveness of current solutions.
Results: Child characteristics: Gender (77% male); Ethnicity (63% white; 14% Asian; 23% other/mixed ethnicity); Age (Median = 10.5 years, Range: 3-30 Years).
86% of the respondents reported that their child experienced negative reactions during the last 6 months. 51% of parents reported that their child reacts negatively to both very specific and general sounds; 40% indicated that their child reacts only to specific sounds; 6% of parents reported that their child reacts only to general noises; 3% of parents were unsure. When asked to indicate all of the types of problematic sounds, 83% of parents indicated loud noises, 61% indicated sudden noises, and 53% indicated high-pitched noises.
Commonly reported emotional states in response to aversive sounds included stressed (80%), irritable (62%) and scared (51%). Common responses included ear covering (86%), screaming (50%), and trying to stop the sound (34%). When the sound sensitivity was at its worst point, many respondents reported a negative reaction daily/multiple times a day (68%), or weekly/several times a month (18%). When asked whether sound sensitivity has an impact on daily life and social opportunities, the most common response was that sound sensitivity at least sometimes limits participation in family (67%), school (69%), and community (70%) activities. Several parents (39%) considered auditory sensitivity moderately or extremely difficult to manage in their child; 43% of parents found that it led to unsafe behavior in their children.
The focus group provided valuable and nuanced insights into changes and variability in sound sensitivity for individuals over time and across contexts. Data is being analyzed using content analysis. Parents indicated that emotional states and motivation to participate in activities often had an important effect on their child’s tolerance to aversive sounds. They indicated some success with existing therapies and technologies, but also expressed a need for further improvements that could more effectively address the complexity of sound sensitivity issues.
Conclusions: Sound sensitivity is an important and still poorly understood aspect of the ASD profile. It is an issue that affects the lives of individuals and families, and warrants greater focus in the areas of research and development.
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