2015 Global Summit on Angelman Syndrome: Saturday panels - Gayle Porter #1

Summary

The session introduces principles for supporting children with complex communication needs—particularly children with Angelman syndrome—through augmentative and alternative communication (AAC). Gayle Porter argues that decisions about devices, vocabulary, and teaching strategies should be guided by the communication outcomes a family wants over the long term, not just by whether a child can complete a practice task.

Start with meaningful long-term outcomes

AAC can seem like a maze of unfamiliar choices: communication modes, devices, apps, vocabulary layouts, page sets, and teaching approaches. Before choosing among them, families and professionals should ask what they ultimately want communication to make possible.

The goal is not communication for its own sake. Communication should support a fulfilling life: participation in education, family and community life, relationships, safety, respect, and meaningful contributions.

Porter groups several guiding concepts under the label “ARCH”:

• Communicative autonomy
• Communication accessibility
• Communication requirements
• Communicative competence
• Communication habits at any time

She uses these as practical indicators: an intervention is promising when it improves one or more of these areas for the person.

Communicative competence has several parts

Porter describes communicative competence as involving knowledge, judgment, and skills in four areas:

• Linguistic competence: Understanding and using language. This includes word meanings (semantics), combining words (syntax), and changing word forms or meanings (morphology). Language is broader than speech; it can be spoken, written, signed, or represented with symbols.
• Operational competence: Being able to access and operate the communication system effectively.
• Social or pragmatic competence: Using communication appropriately and effectively in interactions. This includes taking turns, starting interactions, maintaining or changing topics, giving feedback, repairing misunderstandings, adapting to different partners, and communicating for a range of purposes.
• Strategic competence: Making the best of available communication resources—for example, combining modes or finding another way to express a message when the exact word is unavailable.

Pragmatics involves more than answering questions or making requests. A person may communicate to comment, protest, joke, express an opinion, share information, ask questions, or connect socially. The same words can also serve different functions depending on what came before them.

Porter distinguishes between:

• Mandatory turns, where someone is expected to respond, such as answering a question or following a communication cue.
• Optional turns, where the person has an opportunity to initiate a message but is not required to respond.

She cautions that people who use AAC may come to wait for prompts and questions rather than initiate. Intervention should therefore create opportunities for self-expression and allow enough time for the person to take an optional turn.

Match communication to the person’s needs and situation

AAC should help a person meet a wide range of communication needs: expressing themselves and understanding others as specifically, effectively, independently, and socially appropriately as possible.

• The most effective communication mode can vary with the message, the partner, and the setting. Pointing, gestures, signs, speech, pictures, or a communication device may each work well in different situations.
• Simple messages may be conveyed efficiently without a device in a familiar context. More complex or less predictable messages—such as telling a story or explaining what happened—usually require access to language.
• A system should expand what the person can communicate, rather than requiring them to use a picture or device when a simpler, clearer method would work.
• People should not lose simple communication strategies as they learn more complex ones. New methods should add to their existing repertoire.
• All messages should be valued, whatever the mode. A spoken word should not be treated as more important than a longer message produced through AAC.

Autonomy is not the same as choosing or operating a device independently

Communicative autonomy means being able to express what one actually wants to say, to the person one wants to address, when and where one wants to say it.

• Selecting from options supplied by someone else is not necessarily an autonomous message. Choosing “bowling” when offered “bowling or swimming” does not show whether the person had another idea or wanted neither option.
• A person may need assistance to access a device—for example, someone may help turn pages—yet still communicate autonomously if the message comes from the person.
• Conversely, independently activating a speech-generating device does not guarantee autonomy if the device’s available options do not match what the person wants to say.
• A robust language system supports autonomy. Spelling can eventually allow a person to generate any word, while a larger stored vocabulary increases the likelihood that the desired word is available.

Build a vocabulary system that can grow

Porter recommends considering both core vocabulary—frequent words used across many contexts—and content or fringe vocabulary, which supplies specific words related to topics and activities.

• Core words such as “I,” “want,” “there,” and “this” are useful in many situations, especially when the topic is already understood.
• Specific vocabulary is needed to clarify the topic, convey precise information, and express individuality.
• Systems should provide efficient access to frequently used words while still making less common words available when needed.
• Vocabulary and layout should support growth without overwhelming the learner. They should suit the person’s developmental stage and allow progression without requiring them to relearn an entirely new system.
• Design also needs to account for visual and motor access. If accessing words is difficult, the person has less attention available for learning language and interacting with others.
• AAC differs from speech in form: it may lack intonation, gestures may not be produced simultaneously with device output, and physical access can slow communication. These differences should inform vocabulary and system design.
• A system should support different communication purposes and styles, not just basic requests. A varied vocabulary can help someone express personality and communicate in ways that feel natural with peers and adults.

Make AAC available and meaningful throughout the day

AAC should be treated as a person’s voice and as a means of interaction—not as a therapy task or routine that only appears when an adult decides it is time to practise.

• Keep the communication system available wherever the person may need to communicate.
• Give the person enough time to formulate and deliver a message.
• Availability does not mean the person must communicate constantly; it means they have the option to communicate when they want to.
• If a device is left on a shelf or brought out only for adult-directed activities, the person may miss opportunities to participate and may not learn that the system is theirs to use.
• Adults should model AAC and teach when and how to use it in real situations, rather than removing the system or silencing the person when communication is inconvenient.

Communication access depends on partners and the wider environment

Communication competence is partly shaped by the opportunities communication partners provide. Families, educators, friends, workplaces, and communities need to understand and support AAC.

• Intervention should prepare not only close family members but also extended social networks and community settings.
• Porter describes efforts in Victoria, Australia, to identify businesses as communication-accessible and compares communication access with efforts to improve physical access.
• Partners need to learn how to support communication without taking over the person’s message.

Evaluate meaningful outcomes, not just quick performance

Porter notes that much AAC research has focused on narrow, short-term outcomes. She cites a review reporting that many studies examined simple requests or brief interventions, while fewer looked at natural interactions, partner training, long-term outcomes, or psychosocial factors.

Her practical cautions are:

• Ask what an intervention’s evidence supports, rather than accepting a general claim that it is “evidence-based.”
• Consider scientific research alongside clinical experience, expert opinion, family perspectives, and the experiences of people who use AAC.
• Distinguish a result—such as copying a word, making a selection, or performing a task—from an outcome: whether communication leads to meaningful participation in the person’s everyday life.
• Do not judge success solely by what a person can do with a therapist. Look for whether the communication works in natural settings and helps the person pursue their own goals.

The presentation closes by handing over to Linda Burkhardt, who is introduced as the next speaker on language modeling and practical ways to develop rich communication.

Speakers and sources featured

• Sharon Wilde Chocker — Summit host and introducer.
• Gayle Porter — Speech pathologist and main presenter in this segment.
• Linda Burkhardt — Co-presenter, introduced as the next speaker.
• Janice Light — Cited for a definition of communicative competence.
• Light and McNaughton — Cited on long-term communication outcomes and communicative competence.
• An unnamed mid-1980s study — Referred to in discussion of AAC users losing opportunities for optional turns.
• Crane and Alva — Referenced in connection with vocabulary size and organization; the names may be imperfectly captured by the auto-generated subtitles.
• Alice and the Cheshire Cat, from Alice in Wonderland — Used to illustrate why families should decide where they want communication support to lead.
• Violet and Anna — Thanked for sharing photographs illustrating communication access throughout the day.
• A young AAC user and her mother — Their views are quoted regarding personality, access to AAC, and the importance of being able to express oneself.