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Q&A on the new Multimodal AAC for Individuals with Down Syndrome

People with Down syndrome often experience challenges in the development of their spoken and written communication skills. The brand-new Brookes book Multimodal AAC for Individuals with Down Syndrome explores how augmentative and alternative communication (AAC) can help people with Down syndrome strengthen their communication skills and participate more meaningfully in their communities, from early childhood through adulthood. Editors Krista Wilkinson and Lizbeth Finestack join us this month to talk about how a person with Down syndrome’s communication needs change across their lifespan, the importance of self-advocacy skills, and more.

1. Multimodal AAC for Individuals with Down Syndrome is a part of the respected Augmentative and Alternative Communication Series edited by Beukelman and Light. What makes this book a groundbreaking contribution to the existing literature on AAC, and why is it urgently needed now?

This book is groundbreaking because it directly addresses the need to support effective communication in individuals with Down syndrome throughout the lifespan and in a variety of settings, including life transitions and self-advocacy activities. Often, the communication interventions provided to people with Down syndrome focus solely on production and comprehension of speech. While this focus is critical and should of course continue, the reality is that for many individuals with Down syndrome, the spoken mode of communication does not meet all of their expressive or receptive communication needs—even with the benefit of excellent intervention. This is particularly true during interactions with unfamiliar people. It is therefore critical to consider the many diverse and effective ways to augment their spoken communication.

All of us, with or without Down syndrome, use a variety of means to supplement our speech, whether in the form of written reminders (a grocery list, a calendar), gestures (thumbs up, a shrug), or even facial expressions (an eye roll communicates without any words). For individuals for whom speech production or comprehension is not meeting their needs, these other means of communication become that much more important. This book lays out the wide range of potential AAC possibilities and outlines many of their critical functions. It describes how AAC can be a transitional bridge to language for very young children, how it can serve a supplemental role for individuals whose speech only needs clarification under certain circumstances, and how it can be the primary means of communication for individuals who have very limited speech. The book also discusses how AAC can and should be integrated within the family and used to support independence as the person transitions to adulthood, how AAC can be implemented to encourage independent participation in healthcare settings and related decision-making, and its relationship to literacy and the many outcomes afforded by emerging literacy skills.

This book is critical now because people with Down syndrome are living rich lives in school, vocational, social, and community settings. Supporting effective communication in each of these settings is critical to promoting full participation and engagement.

2. Readers of your book will get the combined expertise of an interdisciplinary group of more than 25 experts on AAC and Down syndrome. Can you talk a little about how the contributors were selected, and the diversity of knowledge and experience they bring to the table?

This book was explicitly intended to bring together professionals, educators, and other key individuals from a wide variety of backgrounds, with the focus on providing insights as to how AAC could enrich communication across settings and ages. For this reason, we solicited authors who themselves represent the diversity of readers we would like to reach. The authors include professionals from the fields of education, healthcare provision, disability and disability advocacy, developmental science across the lifespan, family counseling and family systems, and so on. Most of the chapters include authors from both within and outside of the discipline of AAC itself, as a means to promote the interdisciplinary conversations that the book seeks to accomplish.

3. Your book is lifespan-focused, encompassing a broad age range. How does the book address the ways in which a person’s communication needs evolve over the course of their life?

This book directly addresses two very outdated misconceptions. The first is the misconception that most individuals with Down syndrome reach a plateau in their speech and language development early in life. The second is that AAC is only appropriate for individuals with very limited communication abilities. It is clear that people with Down syndrome continue to develop speech and language skills throughout their lifespan. Additionally, a substantial number of adults with Down syndrome develop Alzheimer’s disease, which affects their communication abilities later in life. Thus, the book includes chapters focused on all stages of development: early childhood, the school years and adolescence, and adulthood.

The book also provides specific strategies and methods for using AAC to support the communication of people with Down syndrome throughout their lifespan as their communication skills and needs change over time. These strategies include those that are considered aided—such as low technology notes and symbol books—as well as high-technology communication devices operated using eye gaze. Unaided communication strategies such as the use of gestures and sign language are also included. The book is designed to showcase the ways in which AAC may continually support the individual communication skills and needs of each person with Down syndrome throughout their lifetime.

4. Self-advocacy and self-determination are topics we cover frequently on our company blog. How will the information in your book contribute to stronger self-advocacy skills for people with Down syndrome?

The ideas and principles of self-advocacy and self-determination underlie all of AAC interventions and are addressed in virtually all of the chapters. When an individual’s expressive or receptive speech skills are not meeting all of their communication and language needs, that person will be compromised in their ability to engage effectively in self-advocacy and self-determination. When we offer that person AAC-supported methods of communication, we promote their ability to engage effectively in decision-making about their lives, from basic minutiae of everyday life (what game to play after dinner this evening) to larger decisions about employment, health care, and the like.

As an example, the chapter on AAC in healthcare settings discusses the use of visual supports to promote independent reporting. The idea is that individuals with Down syndrome—rather than their accompanying caregiver—should be able to communicate with healthcare professionals about their current healthcare status, including pain symptoms, sleep activity, and eating habits. That chapter describes visual supports that could be implemented when a person with Down syndrome must undergo a medical procedure, such as an evaluation for sleep apnea. These supports could be used to help the person understand what to expect and engage in self-advocacy during the actual procedure. In all aspects of their lives, being able to engage in clear communication as independently as possible will provide people with Down syndrome the tools to advocate for themselves and to be a part of determining their own path forward.

5. What are three of the most important things an SLP or educator will know after studying Multimodal AAC for Individuals with Down Syndrome?

Of course, we certainly hope that SLPs and educators, as well as administrators, family members, employment case coordinators, guidance counselors, social workers, nurses, and many more benefit from information presented in our book. While SLPs should always be involved in an AAC team—and in the U.S., are responsible for “prescribing” a speech-generating device—it is critical that all decisions be informed by the individual with Down syndrome as well as the professionals, caregivers, and friends with whom that person will be interacting.

Here are three main takeaways that we want everyone to gain from the book:

  1. Regardless of the stage of development and speech and language abilities, there are many AAC options to support the communication of individuals with Down syndrome.
  2. The types and levels of AAC supports that people with Down syndrome need will likely change significantly over their lifespan, but should always be considered.
  3. AAC supports both expressive and receptive communication skills, allowing people with Down syndrome to communicate more effectively and efficient.

Interested in learning more?

Multimodal AAC for Individuals with Down Syndrome

Multimodal AAC for Individuals with Down Syndrome

Many people with Down syndrome—one of the most common genetically-linked developmental disabilities—experience difficulty developing spoken and written communication skills. In this groundbreaking book, discover how augmentative and alternative communication (AAC) can enhance communicative competence and improve outcomes for people with Down syndrome across the lifespan.

Available Now