Semester of Graduation

Spring 2023

Degree

Master of Arts (MA)

Department

Communication Sciences and Disorders

Document Type

Thesis

Abstract

The lack of involvement of the autistic community and its stakeholders in autism research has led to a call to action. At present, autism researchers have limited knowledge about stakeholders’ priorities for research. The current study aimed to bridge the disconnect between the extant autism research and the recent neurodiversity movement by surveying key stakeholders – parents of autistic children – on their perspectives on autism research that focuses on language. Twenty-six parents of autistic children completed an online survey on their views on autism language research with an option to participate in a follow-up interview. Six parents participated in the interview. Within the survey, 15 language research topics were presented and parents used a slider to rank the importance of each item. Next, each parent selected their top three research priorities. The results indicated that parents highly valued research focusing on how autistic children learn new words, follow directions, learning to read, respond to questions (language comprehension), and on echolalia. Survey responses were then placed in subgroups according to child language ability, age, parent education, and gender. Language sub-grouping revealed that parents who had children with different language abilities ranked language research topics differently. In the parent interviews, all participants explained that their research priorities were individualized to what they thought was important to their autistic child or children. The top barriers parents reported for participating in autism research was time, not being aware of studies, money, and if the research being conductive was invasive. The top incentives for participating in autism research included: whether the study was relevant to their child’s specific needs and whether the study was online or at a specific location. A significant portion of the existing autism literature covers these topics, but future work could further examine each of the highly-ranked topics.

Date

4-4-2023

Committee Chair

Haebig, Eileen

DOI

10.31390/gradschool_theses.5748

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