Rethinking family (dis)engagement with augmentative & alternative communication

Abstract

Augmentative and Alternative Communication (AAC) is a core component of special education for many children with learning disabilities and/or autism who have minimal or no speech. Much literature focuses on implementation of AAC in the classroom or therapy setting, but less is known about how AAC is used in the family home. Few studies are authored by an AAC parent/researcher with reflection on positionality, power and the advantages conferred by 'insider' status. This paper addresses this gap by exploring the perspectives of five families of minimally verbal children on the place of AAC in their child's home communication. Semi-structured family interviews were transcribed and subjected to Thematic Analysis. Formal AAC practices such as Picture Exchange Communication System (PECS) and Makaton were found to play a limited role in the children's home communication. Findings indicate three possible explanations: the emotional and relationship-building dimensions of family communication; the competing priorities of family life with a disabled child; and the child's existing multimodal communication strategies including the use of household objects. These findings offer a preliminary starting point for understanding the emic perspectives of AAC families and reasons for their convergence/divergence with professional attitudes to AAC, and warrant further investigation in larger-scale studies.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Parents’ Perceptions and Experiences with Their Children’s Use of Augmentative/Alternative Communication: A Systematic Review and Qualitative Meta-Synthesis

“…For example, they expressed their "difficulties sourcing pictures" for low-technology systems such as communication books and PECS. Therefore, parents felt frustrated because their responsibilities increased after the introduction of AAC [24,26,27,[29][30][31][32]35,[38][39][40]: "I work full-time as a nurse, and my husband works full-time, and three kids and two older kids who are running in six directions. And unfortunately, we probably fall short of making time [to support AAC use]."…”

“…"I think he just comes back home and thinks I am off I don't have to use them anymore, I have free time, don't bother me with pictures." [29] (p. 202) Subtheme 9: School Parents were most likely to talk about inclusive education as a facilitator, emphasizing the benefits on language and other learning outcomes [27,[32][33][34]36,41]. They explained that a large part of the success in implementing an AAC system lies in the coordination and frequent contact with the teacher, which facilitates its widespread use: "Actually, there is a big improvement from using a Tablet I know this through experience.…”

Comparative Study of the Perspectives on the Impact of a Culturally Responsive Picture Exchange Communication System for Children With Autism Spectrum Disorder in the United Arab Emirates

“…In particular, the families live with their members who have disabilities and can pass vital information to the practitioners that can be used in the rehabilitation process (14,16,27). While the practitioners may focus their attention on the etiology of the challenges faced by the child and on effective intervention methods, the family can continue the rehabilitation process by implementing best practices at home (14,17,28). This clearly underscores calls for close collaboration between the practitioners and the families (14,17,29) in an attempt to develop the skills of children with developmental disabilities such as ASD.…”

“…The second part of the instrument was the Perception toward Picture Exchange Communication Scale (PTPECS), which was designed for this study. This instrument was designed based on a literature review of areas of support required by children with ASD in education (communication, learning, and social interaction) (5,17,18,20,22,25,32). The PTPECS is made up of 16 items reflecting 3 factors (communication skills, learning skills, and social interaction skills), which are anchored on a 6-point response scale, ranging from 0 (not applicable) to 6 (strongly agree).…”

“…Augmentative and alternative communication (AAC) has been identified as a useful means to assist language development in individuals with communication disorders, such as those living with ASD (12,(14)(15)(16). The AAC refers to the development of strategies to enable individuals with a communication disorder to overcome temporary or permanent impairment in communication (17,18). The use of AAC not only helps individuals develop a form of language (5,18) but also helps strengthen the relationships between individuals with disabilities and the other members of society (2, 10,16).…”