Myths: AAC in Early Childhood

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False Beliefs, Widely Held: 
The Myths That Professionals Perpetuate and the Harm They Do To Young Children With Disabilities. 

By Harvey Pressman

Though they fly in the face of the available evidence, myths about Augmentative Communication (AAC) for pre-school children permeate professional practice, in the United States and abroad. The losers? Little children who lose opportunities for learning they may never be able to get back. Parents who fear (perhaps quite understandably, but nevertheless incorrectly) that focusing on ways to augment communication for infants and toddlers may somehow delay or derail their child’s progress in acquiring “natural” speech. Perhaps even more harmfully, the speech language pathologists and other professionals who flirt with malpractice because they are unaware of the overwhelming evidence that contradicts these myths, or are too ready to reinforce the misguided fears of parents.

What are these myths, and why can they prove so harmful to the child? In a 2005 article in Infants and Young Children, MaryAnn Romski and Rose Sevcik sum them up (see excerpts below), dissect each “widely held but false belief” in turn, and back up their peer-reviewed findings with no less than sixty scholarly references. When Romski and Sevcik talk about the need to “open the door to the child’s overall developmental progression,” they also provide a window into the nature of the harm that the perpetrators of these misguided myths can ultimately do to the child. The stakes may be as high as the permanent diminishment of a child’s developmental progression.

How can this be so? Simply because everything we are learning about early learning tells us how crucial and irretrievable the learning opportunities available during these earliest years may be, and how much of a necessary foundation they can provide for future language and literacy learning. When we deprive young children of the building blocks for future mastery of valuable skills, we may be permanently taking the skills essential to academic and life success in their later years away from them. (“It is in the first three years of life that a child’s brain is producing most of the new synapses (pathways between brain cells) that will appear in his or her lifetime. At birth, an infant has approximately 100 billion neurons (brain cells). Each one can produce almost 15,000 synapses. Those synapses that are used repeatedly tend to become permanent. Those that are not activated tend to disappear. It is also in the first three years that the child makes the most dramatic gains in language. There is an explosion in vocabulary and sentence use.” Dr. Alice S. Carter, Yale University)

That is why it is so important that responsible clinicians master the evidence that demystifies these myths, and make available to fearful parents and uninformed professionals alike the compelling reasons for early action, and the best current examples of enlightened early intervention practice in AAC. In an effort to make these resources more readily accessible to busy practitioners, I have compiled the material on the following pages, all of which is readily available via the Internet.

In the fall of 2005, Romski and Sevcik published an exhaustive study of the existing evidence available to refute the myths that have “hampered the inclusion of AAC into early intervention service delivery.” These myths include:

Myth 1. AAC is a “last resort” in speech-language intervention.
Myth 2. AAC hinders or stops further speech development.
Myth 3. Children must have a certain set of skills to be able to benefit from AAC.
Myth 4. Speech-generating AAC devices are only for children with intact cognition.
Myth 5. Children have to be a certain age to be able to benefit from AAC.
Myth 6. There is a representational hierarchy of symbols from objects to written words (traditional orthography).

Abstract:
The use of augmentative and alternative communication (AAC) services and supports with infants and young children has been limited, owing to a number of myths about the appropriateness of AAC use with this population. This article will provide an overview of some of the myths that have hampered the inclusion of AAC into early intervention service delivery and refutes them. It will then examine some of the realities that must be considered when delivering AAC services and supports to young children.

CONCLUSIONS:

“The reality is that it is never too early to incorporate AAC into language and communication intervention for the young child with a significant communication disability. The AAC devices and strategies are a tool, a means to an end—language and communication—not the end. Incorporating AAC during early communication development requires a focus on language and communication development within the context of the AAC mode. AAC is sometimes thought of as a separate area of practice, and thus clinicians do not always incorporate the information they know about language and communication development as they consider AAC assessment and intervention. Often speech-language pathologists think that “someone else” will provide AAC services for the children on their caseloads. It is imperative that AAC be linked to early language and communication development.
“There is a strong history of empirical data to draw on as clinicians make practice decisions about intervention strategies for early communication development. Clinical decisions must be guided by empirical data in the context of clinical judgment not just by “beliefs” (Romski, Sevcik, Hyatt, & Cheslock, 2002). AAC is not a last resort but rather a first line of intervention that can provide a firm foundation for the development of spoken language comprehension and production. It can set the stage for further language and communication development during the child’s preschool and early school years. It also can open the door for the child’s overall developmental progression.”

This study may be found at http://www.iycjournal.com, and was published in:
Augmentative Communication and Early Intervention: Myths and Realities.
Infants & Young Children. 18(3):174-185, July/September 2005.
Romski, MaryAnn PhD, CCC-SLP; Sevcik, Rose A. PhD

At the University of Washington, Patricia Dowden has developed an exceptionally useful and practical website on AAC, including some very valuable video footage which can be extremely useful for pre-service and in-service training. Dowden’s site specifically addresses some common false beliefs about AAC intervention for infants and toddlers, and includes video excerpts of young children benefiting from AAC interventions, as exemplified in the following excerpts:

“Have you heard these myths about AAC intervention???? Don’t believe everything you hear!!

About infants and toddlers:    

  • Infants and toddlers are not old enough for AAC intervention (?)
  • Using AAC will delay or impede a child’s learning to speak naturally (?)
  • AAC intervention should not begin until pre-requisites are met (?)
  • Toddlers and pre-schoolers can benefit from AAC intervention

Take a look at some intervention with very young children who may not have met formal     “pre-requisite” rules years ago. Watch how delighted they are by their ability  to communicate and to control the adults in their lives! This is just the beginning for these children.”

View Video Clip

Toddlers and pre-schoolers benefit from intervention
Harold is learning switch control and turn-taking:
Singing Old MacDonald together is a great opportunity for Harold to practice with a single switch. The Dad sings the first part, then waits until Harold activates the switch to sing his part: “e-i-e-i-o”.

This child is learning eye-gaze as a selection method:
The clinician offers two choices and then waits until she looks at the toy, at the clinician and then back at the toy (triadic eye gaze) before she gives her the toy.

Sami is learning the pleasures of requesting music:
The music stops and then Sami has to activate the switch to request more music. Watch how he relaxes and enjoys the music when he succeeds.

These are just a few examples of very young children benefiting from AAC intervention.
Clearly these children have made a start at alternative communication methods.
Come back to find more about these and other children as this web site grows.

From: http://depts.washington.edu/enables/myths/myths_aac_inter_infants.htm

Another particularly valuable AAC website, useful both for its breadth and scope as well as its practical relevance, is maintained by the Barkley Center at the University of Nebraska (http://aac.unl.edu:16080/yaack/index.html#top).  It includes the following specific references refuting some of the more harmful false beliefs about AAC and “young kids”: Does AAC impede natural speech?

Even when a child’s communication impairments are interfering with his or her cognitive, social and emotional development, some parents and practitioners are reluctant to introduce AAC. This is very understandable since AAC-based communication is frequently viewed as the solution of last resort, condemning a child to a lifetime of abnormal and limited communication. It is considered the end of all hope of natural speech, to be used only after years of failed speech therapy. (Berry, 1987; Mirenda & Schuler, 1988).
The fact is that AAC does not represent this gloomy future. Many adult users become extremely proficient with their AAC, and are able to communicate anything they want to, in any circumstance they find themselves.

Nor does it mean the end of any hope of speech development. Children are frequently provided with communication programs in which speech is a major component. (See Multimodal communication.) In fact, since natural speech is the ideal mode of communication in many circumstances, it behooves a young child to continue with speech therapy along with AAC in order to develop his or her speaking ability to its fullest potential. In fact, numerous studies have found that the introduction of AAC frequently has a positive affect on speech; children who are given AAC often develop speech faster than they would have otherwise (Bodine & Beukelman, 1991; Van Tatenhove, 1987).
On the other hand, while it may be appropriate to continue to focus on speech, it is unfair to leave a child with little or no means of communicating effectively while undergoing years of speech therapy. A child who is unable to communicate effectively is unable to participate meaningfully in many activities, and is at great risk for delays in cognitive, social and emotional development. (See When does a child need AAC?) Thus, it is crucial that he or she be provided with at least some ability to communicate that offers some immediate control over people and the environment, and can be expanded or modified as necessary to meet the needs of the future.
The following table shows the most common fears and myths regarding the use of AAC, as well as research that refutes such concerns, and practical solutions that directly address these issues.

Common fears and myths
•  AAC should be introduced only after giving up all hope of natural speech (Berry, 1987; Silverman, 1980).
•  The introduction of AAC reduces motivation to work on speech (Beukelman & Mirenda, 1992; Silverman, 1980; Van Tatenhove, 1987).
•  Whenever present, even though very limited, speech should always be the primary means of communication (Silverman, 1980).
•  A young child is not ready for AAC. (Beukelman & Mirenda, 1992; Silverman, 1980; Van Tatenhove, 1987).  
•  A child does not require AAC until school-age (Beukelman & Mirenda, 1992).
•  A child with severe cognitive deficits cannot learn to use an AAC system (Kangas & Lloyd, 1988).
•  A child must exhibit certain specific cognitive prerequisites before being able to learn to learn to use AAC (Kangas & Lloyd, 1988).
•  AAC makes a child look abnormal and retarded (Silverman, 1980).

What the facts are
•  It is virtually impossible to predict the future development of speech in a young child (Beukelman & Mirenda, 1992).
•  Children with severe communication deficits who receive only speech therapy often endure years of being without an effective means of communication.  
•  A child who is not able to communicate effectively is at great risk for cognitive, social, emotional and behavioral problems (Berry, 1987; Silverman, 1980).
•  The introduction of AAC correlates with the improvement of natural speech—-even in situations in which no speech therapy has been given (Berry, 1987; Daniels, 1994; Romski & Sevcik, 1993; Konstantareas, 1984; Silverman, 1980). Studies have shown that even normally developing children who are communicated with in both sign language and speech during infancy appear to begin to communicate (initially with signs) and develop spoken language at a much younger age than would otherwise have been expected (Holmes & Holmes, 1980).(See Simultaneous communication.)
•  Children who are unable to communicate adequately are at risk for behavior problems, learned helplessness, academic difficulties, and social failure. (See When does a child need AAC?)
•  Children who use AAC have shown improvements in behavior, attention, independence, self-confidence, class participation, academic progress and social interaction (Abrahamsen, Romski, & Sevcik, 1989; Silverman, 1980; Van Tatenhove, 1987).
•  There are no known cognitive or other prerequisites that are necessary for a child to use AAC. (Kangas & Lloyd, 1988). (See A historical perspective on AAC.)
•  Even infants are known to engage in purposeful, communicative behavior well before the development of language. These early exchanges are very important in that they form the basis for later formal, symbolic communication (Reichle, York, & Sigafoos, 1991). (See Normal speech and language development.)
•  AAC helps a child make the transition into academic and community settings (Van Tatenhove, 1987).
•  Children with severe cognitive deficits are capable of learning and benefiting from AAC (Beukelman & Mirenda, 1992; Romski & Sevcik, 1993; Kangas & Lloyd, 1988; Silverman, 1980).
•  It is impossible to accurately predict a child’s abiltiy to learn AAC (Beukelman & Mirenda, 1992; Bodine & Beukelman, 1991).
•  Acceptance of an AAC-user by peers increases significantly with full inclusion and active participation in regular school-related activities. Among young children, acceptance appears not to be related to the type of AAC (e.g. voice output communication device versus sign language versus communication board) (Beck & Dennis, 1996; Blockberger, Armstrong, O’Connor, & Freeman, 1993).
•  In the long run, a child is at greater risk of being judged retarded when he or she does not have the ability to adequately express him- or herself. Teachers and parents often judge a child with communication impairments as socially and cognitively less capable than their peers. This results in lowered academic expectations and, frequently, decreased academic achievement (Rice, 1993). AAC may help in reducing the discrepancy, both real and imagined, between the child’s actual and perceived cognitive and social capabilities.

Practical solutions
•  Speech therapy can be offered in conjunction with AAC interventions. The degree to which emphasis is placed on the development of speech versus AAC should be based on periodic reevaluations which assess the child’s communicative ability in various activities and routines that are typical for a child that age (Beukelman & Mirenda, 1992).
•  Little research has been conducted to determine if certain types of AAC are more likely to facilitate the development of speech. However, a simultaneous communication approach, in which speech is utilized by the adult alongside AAC, seems likely to assist in speech comprehension and production (Beukelman & Mirenda, 1992).
•  An assessment should be conducted to determine the environments, activities and people with which speech can serve as the principle means of communication. Usually it is family and close friends who are able to understand speech that has limited intelligibility. Focusing on the use of speech in these situations can occur while AAC continues to be emphasized in other settings. Periodic reevaluations can determine whether the child is continuing to participate as effectively, efficiently and meaningfully as possible in all activities and environments.
•  AAC programs must be individualized, age-appropriate, and developmentally appropriate. For young children this often means play-based interventions that focus on the development of communication-related skills, intentional communication, or basic functional communication, such as requesting and rejecting (Beukelman & Mirenda, 1992).
•  Ideally, children should have already attained a measure of communicative proficiency prior to entering kindergarten. It is difficult enough for a child with disabilities to adjust to a new environment, curriculum and social scene without simultaneously having to learn AAC for the first time. Furthermore, by the first grade, many children will require a writing system as well, such as a computer (Beukelman & Mirenda, 1992).
•  AAC interventions must be individualized to take into account the strengths and abilities, and to meet the needs of the child for whom it is being designed. This may mean starting out teaching intentional communication skills and basic communicative functions, and using nonsymbolic and/or self-developed, idiosyncratic means of communicating (Beukelman & Mirenda, 1992; Reichle, 1997). (See The first goal: Intentional communication.)
•  All individuals, including children with severe cognitive impairments, have the right to be given opportunities to communicate by learning communication skills that are effective almost immediately, offer some control over the environment, and are age-appropriate (Beukelman & Mirenda, 1992; Reichle, York, & Sigafoos, 1991; Silverman, 1980).
•  AAC users should be educated in regular classrooms alongside their peers to minimize attitudinal barriers. In addition, teachers, students and other significant persons who are to be involved with the child must be informed of the nature of the communication disability, and any discrepancies between the child’s language and cognitive abilities. (It is important, however, to keep such information-dispensing sessions separate from typical school activities in which students participate since the latter are opportunities to de-emphasize differences between the AAC user and his or her peers.) In addition, keeping the child’s AAC vocabulary up to date, age-appropriate and relevant to the child’s own interests go a long way towards facilitating acceptance by peers and others.

A recently inaugurated project in Canada is demonstrating specific ways to promote more rapid language and literacy progress for preschool children with AAC needs. Augmentative Communication Community Partnerships – Canada (ACCPC) (www.accpc.ca) is a federal, non-profit, community-based organization which provides education, research and resources for people who have severe speech impairments and who use other ways to communicate such as picture displays, alphabet boards and voice-output devices.

ACCPC supports people who use Augmentative and Alternative Communication (AAC) by providing resources to them, their families, service providers and community agencies.  ACCPC has collaborated with KidsAbility-Centre for Child Development and Bridges-Canada to bring the pilot Early Literacy Project to students with physical and/or communication disabilities in Waterloo, Ontario.

A demonstration site at KidsAbility-Centre for Child Development, is being developed to support early literacy development for children who are “junior kindergarten” age. The innovative project  focuses on the needs of children who have physical disabilities and/or who require augmentative and alternative communication. The following excerpts from their web site illustrate the potential value of their work to people concerned with the lost opportunities for early literacy development and their long-term consequences:
The ability to read and write is important for:
•    Academic learning
•    Communicating for individuals who cannot speak
•    Accessing leisure activities
•    Personal growth
•    Participantion in all levels of society
•    Employment

Literacy and Students who have Disabilities

Students with disabilities may experience challenges in developing literacy.
Some of these challenges might include:
•    Maintaining attention during story book reading
•    Holding a book or turning pages
•    Pointing to pictures or to words
•    Understanding words because of limited experiences
•    Understanding literary style due to delayed language development
•    Participating in story retelling, predicting, commenting
•    Participating in chanting of songs, rhymes and stories
•    Holding and controlling pencils, crayons, markers, paint brushes
•    Manipulating magnetic letters, puzzle pieces, card games

 

You can find videos of the following stories at:  http://depts.washington.edu/enables/myths/myths_aac_inter_infants.htm

Jenny
Jenny is a 4 year old girl who cannot speak. She is impatient and doesn’t enjoy listening to the stories being read, but she likes to turn pages. Her attention improves when there are only two to three words per page and when she can manipulate the pictures. The pictures also provide a support for language development. When Jenny’s attention wanders, the reader uses pull-off pictures to draw her attention back to the page. To see an example of this type of adapted story, click on the following link: Adapted Stories to Go by Pati King Debaun.
(Click “Sign In” and type “sample” for both user name and password. Click the “Sample” link and download a sample to view. Note that you will leave this web site when you do this.)

Josh
Josh is a 5 year old boy who has autism. He does not enjoy participating in group activities and has difficulty communicating. Josh demonstrated an interest in books, and was drawn to the BookWorm in his classroom. His teacher used this interest to support his developing communication and literacy skills. The Ablenet web site presents a video showing Josh being supported in his literacy and communication development by adapting stories to work with the BookWorm. In his video clip, one can see how this technology was used to support Josh’s comprehension of stories, his vocabulary development, his communication skill development, and his social interaction with peers. To skip directly to the case example and bypass the technology demo, click on “SKIP INTRO” and then on “A BookWorm testimonial”. Please note that you will leave this web site when you do this.

Billy
Billy is a 5 year old boy who has cerebral palsy. He does not have the fine motor control to hold a book and turn pages with ease, or to point to small pictures or text on a page. He is also unable to use crayons or markers, a standard keyboard or mouse. His teacher has adapted the pages of the storybooks she reads with him, by clipping foam to the corners of the pages. This allows Billy to place his hand between the pages to turn them when an adult holds the book. For self-selected reading she has made electronic versions of the stories that Billy can independently access by using an expanded keyboard at the computer. After reading the story Billy is able to use the expanded keyboard to engage in story retelling and other early writing activities that relate to the story. In his photograph, Billy is using an overlay on an Intellkeys keyboard to retell the story in the correct sequence.

What is AAC?

People who are unable to speak because of severe physical disabilities (e.g., cerebral palsy, autism, traumatic brain injury etc.) may use augmentative and alternative communication (AAC) to convey their messages. People who use AAC may understand and hear everything that is said. They cannot control the muscles to produce speech and rely on AAC methods to communicate. Some people also use AAC tools and strategies to support their understanding of spoken or written language.

AAC includes picture or letter boards, computers and voice output communication devices.People use these systems by pointing to or typing the items they want to say, by using their eyes to look at their messages or by using switches or other assistive technology to operate devices.

Literacy Challenges for Students with Disabilities

“One of the greatest challenges for me as a teacher has been to convince parents of the importance of language and literacy in those early years. When students with physical disabilities are very young, parents tend to focus upon therapy needs and sometimes there is not much time left or energy left for literacy activities. Remember that when a child becomes literate, a new world opens up – it’s a great gift! Think of all the possibilities! Listening to and reading stories feeds the imagination. When a child begins to put letters together to write, she/he can use email to communicate with others and use the Internet. If time is limited I tell parents read, read, read to their child if they don’t have the energy for anything else!” Claudia W. (Teacher)

“I believe that a love of reading comes not only from the material you are reading but also from the pleasure you get from the time spent reading. If the act of reading becomes too cumbersome, or requires too much effort, the child will not want to read. This problem applies to all children and all readers, but the effort kids with disabilities need to expend is higher by default. So the issue is not only to teach the kids the ability to read but also to preserve the desire to read.” Julie M. (Parent)
“Having taught children with multiple challenges for many years, I know how difficult it can be to provide a balanced educational program when there are so many therapy goals that are also a high priority for these children.  For parents, who are so busy with the day-to-day care of their children, I can fully understand why they might feel that there is not enough time left for much else.  I believe strongly, however, that an early language and literacy program that is geared to the developmental level of the child is extremely important.  Not only do literacy activities provide enjoyment, they also open doors for the future.

Whether or not a child will achieve the ability to read or write, listening to stories, songs, and poems, participating in the telling of them (either verbally or using adapted devices), and being exposed and formally introduced to print will promote the development of social and communication skills, and will provide the foundation for potential academic learning.  Literacy in the early years should be equally as high a priority as therapy, and if possible, could happen simultaneously, because it contributes just as much to the development of the whole child.

Teachers and parents of special needs children probably do more than they realize; for example, I have witnessed books being read while children are in standers, songs being sung while kids are on the change table, silly rhymes being chanted as stretches are being done or medications are being administered, and environmental print being pointed out as kids cruise along in their walkers.  Along with working to highlight the importance of early literacy within this population, we need to validate what teachers and parents are already doing and provide resources and strategies to help them to continue.” Kellie B. (Teacher)

Accessing Literacy

To provide access to early literacy, children with disabilities need:
•    An environment in which they can explore and access literacy materials.
•    Teachers, educational assistants, and clinicians who can accommodate the literacy needs of students and provide modeling and instruction in early reading and writing.
•    Parents who know how to engage their child in literacy activities at home.

In addition, students with physical and/or communication disabilities may need individually adapted tools and resources to support them in accessing reading and writing activities.

Janice Light’s research on language development for young children who require AAC interventions promises to move the field light years ahead in developing effective interventions and techniques to move young children ahead in their language and literacy development. Fortunately, the AAC-RERC has made available a webcast in which Light describes the current progress of her research.  www.aac-rerc.com Also available on line are written descriptions of Light’s research, which is summarized below.

Webcast:  AAC Interventions to Maximize Language Development for Young Children
Presenter: Janice Light, Ph.D., Professor, Department of Communication Sciences and Disorders, Penn State University
Link: Click here to view the webcast
Link: Click here to view the slides for this webcast as a PDF file.
Link: Click here to view the handouts for this webcast as a PDF file.

Webcast Description: Young children who have significant communication disabilities are at risk in all aspects of their development. Early AAC intervention is essential to maximize outcomes. This session will reports on the results of a research project, funded by the National Institute on Disability and Rehabilitation Research as part of the AAC-RERC.

The session will discuss: (1) effective designs for AAC systems to better meet the needs and skills of young children, and (2) effective techniques to implement AAC with young children who have significant communication disabilities (ages 0-3) and their families.
Implications for effective evidence-based practice are discussed, using case studies to illustrate the effects of these interventions on language and communication development. With early access to appropriate AAC technologies and services, young children with significant communication disabilities will be better able to build the language and communication skills that they require to achieve their full potential and maximize outcomes (in the future).

Light is studying the challenges literacy development presents for children who have significant speech impairments and require augmentative and alternative communication (AAC), such as gestures, communication boards, voice output communication aids. Children who require AAC are a heterogeneous group with variation in language skills, world knowledge, and motor, sensory, and perceptual skills. While a small number develop high-level literacy skills, most have difficulties and lag behind their peers. Children who require AAC face significant challenges in developing the phonological awareness and language skills that form the foundation for literacy development. Although there is some evidence that individuals who require AAC can develop phonological awareness despite their limited access to speech production, most individuals who require AAC demonstrate deficits in this area. Current findings suggest that access to even limited articulatory ability may facilitate decoding, and access to AAC systems with speech synthesis may increase the development of phonological awareness. Other results from this research demonstrate quite dramatically the salutary effects of the interventions, including instruction in phonological awareness skills (e.g., sound blending, phoneme segmentation), vocabulary knowledge, letter-sound correspondences, single word decoding, shared reading of connected texts, and reading comprehension.

Many children who require AAC use graphic symbols (e.g., line drawings, photographs) to express meaning. Use of AAC symbols may facilitate some aspects of early literacy development, such as awareness that print conveys meaning; however, use of AAC symbols may not facilitate other critical aspects of literacy development (e.g., knowledge that letters have different shapes and that letters represent sounds).

Traditionally, little emphasis has traditionally been placed on reading instruction and writing instruction for children who require AAC supports. Their interactions in story reading are qualitatively different from those of their peers. Children who use AAC have significantly less opportunity to learn to construct meaning from stories independently, as their parents and teachers tend to dominate story-reading interactions.

Improving literacy outcomes for children who require AAC is of critical importance because literacy skills enhance their communication effectiveness tremendously and improve their employment options as well. Priorities for future research include investigating factors that influence literacy outcomes, determining the effect of AAC symbol use on the development of early literacy skills, investigating the effect of speech synthesis on the development of phonological awareness and early literacy skills, evaluating the efficacy of interventions to promote phonological awareness and early reading and writing development, and investigating effective strategies to support the transfer of research to practice. As with studies of deaf children, understanding how children who use AAC acquire literacy will provide important insights into literacy learning in general. (See also Light, J. C., & Kent-Walsh, J.  (2003, May 27). Fostering emergent literacy for children who require AAC. The ASHA Leader, 8, pp. 4-5, 28-29.)

Light’s description of one child’s progress makes clear how important her work can be:

Gareth’s Story
Gareth Prebble is 30 months old. Like many children his age, he loves to read books with his mom or dad and play games like Go Fish or Concentration. However, Prebble faces significant challenges in his life. Due to a trauma during birth, he has cerebral palsy.
Prebble has very low muscle tone and is functioning at about a 4-month level in both his fine and gross motor skills. He had no gag reflex shortly after birth and to this day cannot swallow consistently. Because of this, he has a tracheotomy. He cannot speak due to the trach, and his low muscle tone inhibits his ability to use sign language. However, Prebble is not delayed cognitively.

When Prebble was 22 months old, his parents took the initiative to start a simple picture communication system with him consisting mostly of photographs of all his toys so he could choose with which toy he wished to play. He learned this system quickly and was happy to at last have some small way to communicate.
With the help of a speech language pathologist, his parents introduced some simple voice output communication aids to him as well. He was able to use all of these with ease, but it was clear that none of these devices provided the child with enough opportunities to communicate, nor did they allow him to communicate on his own.
When Prebble was 24 months old, his speech language pathologist introduced him and his family to Janice Light, a professor in the Department of Communication Sciences and Disorders at Penn State University. Dr. Light is the principal investigator on a research grant supported by NIDRR as part of the Rehabilitation Engineering Research Center on Communication Enhancement (AAC-RERC).

Through the NIDRR-supported research project, Light, Kathy Drager, and their colleagues investigate new ways to design AAC technologies to reduce their learning demands and increase their appeal for young children like Prebble. With improved, child-friendly designs for AAC technologies, it has been possible to intervene with children at much earlier ages to maximize their language development and communication.

As participants in the research grant, Prebble and his parents worked with the research team in weekly sessions at their home to develop appropriate AAC assistive technology to meet his needs, to implement these systems within his daily life, and to evaluate the impact on his language and communication development.
Prebble made rapid progress learning to use his new AAC assistive technology. When he first started in the research project at 25 months of age, he had approximately 50 pictures that he used to communicate, mostly to request favorite toys. He typically took approximately one turn in 5 minutes of interaction. After 12 weeks of intervention through the study (at 28 months of age), he had acquired more than 400 words/concepts. He learned to express a wide range of language concepts including people, actions, objects, places, social words, descriptors, questions, and relational concepts. In fact, he learned approximately 4–5 new concepts a day, keeping pace with rates of typical language acquisition. He began to combine concepts into two- and three-word sentences to communicate more complex ideas. He was much more active and engaged, taking more than 10 times the number of turns that he used to take in interactions with others. At 30 months of age he had over 700 words and concepts.
“The use of AAC technology was a natural fit as Gareth has inherited his father’s love of computers,” said Prebble’s mother. “His enthusiasm was evident from the first time Janice brought the system during a visit. At first, the system was programmed with a few of Gareth’s favorite songs and books. Gareth thoroughly enjoyed his new ability to sing and read through the system, and we delighted in listening to him!”

More concepts and choices were added to his system, including menus and levels of options, to accommodate his growing vocabulary. He started creating two- and three-word sentences using strings of images such as “bus go fast” in describing how he wished us to manipulate his toy bus.

Prebble now uses his AAC system to communicate with a variety of people. He can talk with other children, sing in groups, and use his system to engage in imaginative play. Others around him are now starting to realize his strengths and abilities and are interacting with him more frequently and for longer periods.

For more information about myths and AAC, please visit Augmentative Communication Inc.’s website for an article on “Myths and Misconceptions” found in Volume 8, Number 2 of the Augmentative Communication Newsletter:   http://www.augcominc.com/newsletters/index.cfm/newsletter_45.pdf

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