Parent Perspectives on Assisted Communication and Autism Spectrum Disorder.

Abstract

Importance: Parents of nonspeaking children with autism spectrum disorder (ASD) may present with complex challenges associated with communicating with their children.

Objective: To explore the firsthand experiences of parents of children with ASD who use assisted communication (AC) to communicate, which has yet to be explored in the literature.

Design: Semistructured interviews with ten parents of individuals with ASD, age 15 to 36 yr, who use AC to communicate.

Results: Analysis of the data revealed four superordinate themes, each with two subthemes: (1) Relationship (subthemes: Involving the Child, Improved Relationship), (2) Future (subthemes: Hopes and Dreams, Planning), (3) Support (subthemes: Limited Availability of Service Providers, Underestimation), and (4) Understanding (subthemes: Communication, Understanding of the Child). The themes illustrated that using AC modalities improved the parent-child relationship (Relationship) and helped parents understand their child on a deeper level (Understanding). A positive outcome of having a new means of communication with their child was that parents could better plan for a future that reflects their child's innermost hopes and dreams (Future). Parents also reported that the lack of a consensus concerning using AC with nonspeaking children led to decreased support (Support) from professionals and educators, limiting the child's opportunities.

Conclusions and relevance: This study provides phenomenological qualitative evidence that use of AC provides benefits to the parent-child relationship. Plain-Language Summary: This study investigated the lived experience of parents of children with autism spectrum disorder (ASD) and how the use of assisted communication (AC) affected their relationship with their child. Ten parents were interviewed. Four main topics emerged from the analysis of these interviews: (1) improved closeness in relationship, (2) improved ability to plan for the future, (3) wish for improved availability of service providers, and (4) improved understanding of who the child is as a person. Parents play a key role as team members in support of the child's performance in occupations. The results of this study suggest that AC plays an important role in supporting the parent-child relationship; therefore, AC programs should be considered when implementing and planning occupational therapy treatments for individuals who have communication impairments.