Summary of Dr. Sennott study.
Language allows us to share what matters to us with the people we care most about. Individuals with AS face major barriers to access language. Typically developing children learn to use speech to communicate only after thousands of hours of watching and hearing others using speech. This immersion in our native language is important to our language development. Anyone who has tried to learn a second language by only taking lessons knows how difficult it is to learn a language in the absence of immersion with others using the language. However, individuals with AS rarely witness others communicating in a method that they, too, can use. Research tells us that learning to use an alternative communication system (AAC), where we touch a photo or symbol to express a word, requires the same kind of immersion in the language that it takes to learn a second language. Supporting communication in individuals with AS requires creating an immersive language experience with the student’s AAC. This study aims to teach parents and other communication partners to use the student’s AAC as their own voice in order to provide this immersion.
The purpose of this study is to test a research-based training program specific to AS that has proven success with other populations who have a disability and cannot use speech. This study teaches the people who live with, learn with, and support the individual with AS on a regular basis to be better communication partners ourselves, by modeling use of AAC in our ordinary communication with each other and with the individual with AS. Measurement and reporting during the study will evaluate the effectiveness of the program to see A) if communication partners learned new skills using the AAC device, and B) if the individual with AS developed new communication skills. The goal of the study is to create a successful communication training program that families of individuals with AS can replicate at home, school, and wherever their individual with AS spends most of their time.
The study will begin with researchers and the individual’s communication partners—parents and educators, and others who interact regularly with the individual with AS—discussing how the individual communicates currently, what AAC device is available, their interests, and so on. Communication partners will then receive coaching based on the “Model, Encourage, Respond” strategy. The following example might happen during mealtime.
This example might happen in the evening when the family is relaxed at home.
This example might occur on the weekend.
This strategy creates a natural back-and-forth conversation between the communication partner and individual with AS that, over time, could improve the quality of the interaction and improve use of AAC devices. Research with other individuals with communication disabilities indicates that this approach improves the individual’s ability to:
The idea seems very basic, but since no studies specific to Angelman syndrome have been conducted, this communication partner training strategy will help gather tangible scientific data to eventually provide families with the most effective communication training in the future.
The ultimate goal is that everyone in the individual’s life will be involved with the program. This helps the individual with AS progressively improve his/her use of the communication device by observing others using the AAC device in meaningful experiences throughout the day.
The mission of Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.