What we know and what we don't know
Sarah W. Blackstone
Ph.D.,Augmentative Communication Inc.Monterey, CA,USA
Fax: 00 - 1 - 510 - 527 4892
It is an honor to be invited to speak with you and to be a guest in Chile. Many thanks to our hosts for inviting me. Two decades ago, we didn't know much about how to help people with severe communication impairments. When I first began to work as a speech-language therapist with children and adolescents in a rehabilitation center and school, seventy percent of my caseload had speech problems so severe they were very difficult to understand. Many had endured years of articulation therapy with minimal results. These children had a range of diagnoses (cerebral palsy, autism, developmental delay, Down syndrome and severe language impairment.) They also had a range of cognitive, motor and receptive language skills. Not surprisingly, many were said to have behavior problems. All were frustrated and few had any friends. None were participating actively in their school classes. Of course, their parents were sad, confused and worried. As a new therapist, I was overwhelmed. I truly had no idea what to do. No professor had suggested a good solution. They taught us about adults who couldn't speak, but made little mention of children with apraxia and dysarthria. My colleagues and I agreed that we must do something. Asking these children to practice sounds they were unable to produce, was unfair. An area of practice that was beginning to emerge Augmentative and Alternative Communication--meaning all forms of communication that augment speech. Let me tell you the story. In the early 1970s a few therapists, teachers, parents and engineers were having similar thoughts about helping people communicate who were unable to speak. We began to meet each other at conferences and to share ideas and the surprising successes of children and adults who were using pictures, Blissymbols and manual signs to communicate. One night at a conference in Minnesota, a group from the United Kingdom, Sweden, Canada and the United States went to dinner. I wasn't there but I've heard that they drank lots of wine and talked until late at night. This gathering led to the founding of the International Society for Augmentative and Alternative Communication (ISAAC). An important event had occurred because professionals began to realize they didn't know enough to help the people they were committed to helping and needed each others assistance. Today my colleagues have asked that I speak to you about What We Know and What We Don't Know. First, I want to share with you a simple framework for Knowing and give you examples of each stage.
Stage 1. Don't know that you don't know. Example.
Stage 2. Know that you don't know. Example.
Stage 3. Know that you know. Example.
Stage 4. Don't know that you know. Example.
In 1996, we know more than we ever did about people who use AAC and their partners, about graphic symbols, about language, literacy and vocabulary selection, about low and high tech communication devices, about approaches to training and to service delivery. Today, we have multiple sources and resources that can help us find out what we don't know. For example, the AAC Journal published articles on more than 100 subjects by 70 researchers in just one year(1995). ISAAC now has members from more than 40 nations and has ISAAC chapters in 11 countries with others soon to be formed. We have newsletters, textbooks, videos and courses offered around the world. Today different professionals, AAC users and family members, manufacturers exist who are at all stages of the AAC learning process. My goal for this talk is to (1) Briefly share with you some important things we know and (2) Challenge you to explore with the AAC community those areas we don't know enough about.
What we know
1. People with severe communication impairments
a. Represent a substantial number of children and adults that can benefit from AAC across the life span cradle to grave. There are no prerequisites for communication.
b. Have a variety of congenital, acquired or degenerative conditions that impact the need for communication support Congenital (e.g., can learn to read and write; can use AAC and be contributing members of families and society) Acquired (e.g., can use AAC techniques as a bridge to speech and support communicative exchanges and active membership in their communities) Degenerative (e.g., can use AAC techniques to to maintain employment, relationships and productivity long after speech is lost)
c. Use multi-modal systems which often are context specific d. Require a team approach e. Benefit most from community-based training
2. Primary communication partners of people with SCI
a. Tend to dominate interactions
b. Need to learn to communicate in ways that support use of AAC
c. Often foster learned dependency that is difficult to counteract
d. Have made an enormous difference in the lives of individuals who use AAC
3. Communities within which people with SCI live, go to school and work
a. Need information about how to provide opportunities to individuals who use AAC
b. Have preferences regarding communication modes and opinions about speech synthesizers and so on.
c. Are doing a much better job in some areas of the world than other areas.
d. Can look to ISAAC and its members to play a role in information exchange.
Speech, Language and Communication
What we know
1. AAC techniques do not have a negative impact on speech development or the return of speech after an accident or insult. In most cases, AAC techniques seem to have a positive impact.
2. Children and adults with severe speech impairments can (and do) learn to read and write. However, to do so they need access to books and opportunities to read and to write.
3. Individuals with severe cognitive delays can use AAC devices and techniques that are useful and serve them well.
4. Individuals with SCI communicate more slowly using language they select from displays. Many continue to rely on their speech/vocalizations and gestures in certain contexts, even when they have low and high tech communication devices available to them.
5. Graphic symbol systems and sets allow individuals who are not literate to access language. There is considerable research on the transparency and translucency of symbols and interest in how symbols are learned. Clinicians often make practical decisions when selecting graphic symbols.
6. Manual sign language (generally abbreviated forms) assists many individuals (particularly those who are ambulatory) to communicate with familiar partners. However, individuals who are included in school, community, workplace need forms of communication that the general population can understand.
7. Speech synthesis seems to help children with severe cognitive impairments to attach meaning to language.
8. People communicate to:
b) exchange information;
c) achieve social closeness and
d) maintain social etiquette.
Speech, Language and Communication
What we don't know
1. How to optimize communication displays
2. The impact of rate enhancement techniques on language and literacy learning
3. The role of syntax in the language learning of children who use AAC
4. How to optimize communication for individuals with aphasia using AAC techniques and devices
5. and much more . . .
What we know
1. Communication speeds using AAC devices are slow. In low tech approaches, partners can predict messages to enhance rates. In high tech devices, coding (semantic and alphanumeric) and linguistic prediction techniques can be used.
2. Coding systems often require extensive amounts of time to learn
3. Dynamic screens enable multiple levels of vocabulary to be displayed
4. Some speech synthesizers are intelligible. DECTalk is often more preferable and intelligible than other synthesizers.
5. Spanish (and other languages) synthesizers and graphic symbol sets are now available.
6. Digitized speech technology provides a range of options for all individuals.
7. Devices that are complicated to learn are rarely used. When they are used, they are rarely used to their potential.
What we don't know
1. How to teach children and adults to use devices/symbols in ways that enhance communication.
2. How to solve the problems of ambulatory individuals who need AAC.
3. and much, much more . . .
What We know
1.Goals should be set only in consultation with AAC users and their families.
2. Assessment is an ongoing process. Lengthy initial evaluations are rarely cost effective.
3. Instructional strategies that support participation in daily activities and natural contexts are preferable.
4. Technology is a tool. It is not the focus of AAC.
5. Use of voice output provides power, gains attention and facilitates independent communicative exchanges and more equal participation in life activities.
6. The AAC user and family are the most important members of a team.
7. Literacy is the key to provides access to language and should be an integral part of most individuals intervention program.
8. Vocabulary selection should be done in ways that are meaningful to AAC users and their families and support their activities.
9. We should train those support people who can do a good job.
10. Aided language stimulation, picture exchange strategies, conversation books seem to be effective approaches to training.
What we don't know
1. How to teach language skills to children who use AAC
2. The impact of coding systems on language learning
3. How to accomplish desired outcomes of AAC consumers
4. How to integrate multiple assistive technologies in ways that allow optimal function.
5. How to accomplish active participation of chilfen who use AAC in regular classrooms
6. and much, much, much more . . .
We have learned a great deal about how to assist people with severe
communication impairments to live productive lives. Each decade has brought
more answers experiece is that every time I meet someone who needs help
communicating, I am reminded of what I don't know as well as relieved because
I do know enough to get started. Thanks to the dedicated researchers, families,
consumers and professionals in our AAC community, we will continue to cycle
through the stages of learning.