“You just want to be able to communicate with your child”: Caregivers’ perspectives on communication and AAC for beginning communicators on the autism spectrum
Open Access
- Author:
- Laubscher, Emily
- Graduate Program:
- Communication Sciences and Disorders (PHD)
- Degree:
- Doctor of Philosophy
- Document Type:
- Dissertation
- Date of Defense:
- January 07, 2022
- Committee Members:
- Diane Williams, Major Field Member
Paola Migliaccio-Dussias, Outside Unit & Field Member
Carol Miller, Major Field Member
Janice Light, Chair & Dissertation Advisor
Nicole Etter (She/Her), Program Head/Chair - Keywords:
- augmentative and alternative communication
autism spectrum disorder
beginning communicators - Abstract:
- For young children on the autism spectrum who are beginning communicators, augmentative and alternative communication (AAC) can support various language skills and provide a means of participating in the social interactions that serve as critical contexts for early language learning. To maximize language-learning opportunities for these children, it is important for AAC to be integrated into interactions within the context of daily life. It is particularly important for AAC to be integrated into caregiver-child interactions, as parents and others in similar caregiving roles are some of the most important early communication partners for young children. Research suggests that AAC is more likely to be implemented at home when it fits well with the needs and priorities of the family and when it is able to be supported within the home environment. Understanding parents’ experiences surrounding communication and AAC can provide important insight into the process of implementing AAC within everyday life, including barriers and supports to communication and use of AAC systems. To date, however, little research has investigated the experiences of parents of young children on the autism spectrum who are beginning communicators with respect to communication and AAC. This study addressed the following questions: (a) What are parents’ communication experiences with their children on the autism spectrum who are beginning communicators? What challenges and supports do parents face relative to their child’s communication?; and (b) What are parents’ experiences surrounding use of AAC systems with their children on the autism spectrum who are beginning communicators? What challenges and supports do they face relative to use of AAC systems? The study used a phenomenological qualitative design. Eight parents or caregivers of seven children on the autism spectrum participated in the study. Data were collected via semi-structured interviews, and thematic analysis was used to identify themes within the data. Five main themes and 16 sub-themes emerged from the data, suggesting the following key messages: 1. Young children on the autism spectrum with limited speech have a profound impact on parents and the entire family. 2. Parents often devote enormous amounts of time, energy, and other resources to ensure the best life and outcomes for their child and their family. Often, supporting their child requires them to make substantial sacrifices and to take on roles and responsibilities that go beyond those required of many other parents. 3. Parents often have positive experiences with AAC professionals, but also have to work to seek out additional support, including practical support, emotional support, and information about topics including but not limited to AAC, to enhance quality of life for themselves, their child, and their family. Parents often seek support and information from other parents of children on the autism spectrum. 4. Parents of beginning communicators on the autism spectrum value communication and consider it a priority. 5. Parents consider AAC to be beneficial; however, the practical challenges of obtaining, learning, and implementing AAC can be numerous, and these challenges are often ongoing as child and family needs and skills (and, therefore, the best fit in an AAC system) evolve over time. 6. Every child and every family is different. What works for one family may not work for another. Each child and family’s unique needs are dynamic, changing over time as skills develop and priorities shift. 7. Communication outcomes are impacted by factors external to the child and the family, including the healthcare and education systems. 8. The communication team (child, parents, and professionals) is a system that thrives on mutual respect, communication, and collaboration. Parents must be recognized as experts in their children and given opportunities to both share their knowledge and to receive training from professionals that meets their specific learning and support needs. The results affirm the need to think in terms of ecological and family systems when providing AAC services. Additionally, they suggest implications for provision of family-centered AAC services, including implications for (a) provision of support for parents; (b) design of AAC systems; (c) adoption of a personalized intervention approach in AAC, (d) consideration of stakeholder-defined outcomes; (e) provision of AAC provider training in family-centered services, (f) provision of support for building caregiver competencies, and (g) design of AAC service delivery models.