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5. What are the Questions?

Few research studies describe the communication characteristics of persons with AS in any detail. Even fewer mention intervention strategies. Thus, many questions remain unanswered about the communication support needs of persons with AS across the life span. Most individuals now identified as having AS are still children. Many speech-language pathologists and AAC professionals are still unfamiliar with AS, and the majority of adults with AS are probably still undiagnosed. Therefore, we have a long way to go before we understand (1) the clinical course of this syndrome and (2) the most efficacious ways to provide AAC intervention. Talking with colleagues about this population generated the following list of research questions:

• How can we support families more effectively, given that communication is often their major concern?

• How homogeneous is this population? For example, is the range of cognitive, language and motor skills broader than currently reported? Does speech ever develop? To what degree? Do differences correlate with type of AS?
• If the group is more heterogeneous than currently reported, are there ways to predict who will do better with what types of AAC interventions?
• Can we accurately predict the degree of communication impairment? Can we do this based on type of AS alone? What are important contributing factors?
• What are the kernel communication issues in infancy and early childhood? In school-aged children? In adolescents? In young, middle-aged and elderly adults?
• What is the efficacy of different kinds of AAC intervention with this population, i.e., are there substantial differences in the types of communication generated with and without communication devices? with and without communication books?
• What is the impact of AAC intervention in meeting the communication needs of children and adults with AS over their life span?
• What are the outcomes of AAC intervention if measured at the World Health Organization's level of impairment? Of disability? Of handicap? How should we measure communication outcomes?
• How can we develop an integrated communication and educational program for individuals who have AS?
• How can we most effectively manage challenging behaviors in persons with AS?
• What are variables that predict success in inclusionary classroom settings for children with AS? In group living situations for adults with AS? In supported work environments for adults with AS?
• When and how should we introduce symbolic communication (tangible objects, signs, photographs, pictographs) to children with AS?
• What types of assistive technology are effective? When and how should voice output communication aids (VOCAs) be introduced?
• Given that individuals with AS are reportedly "tough" on adaptive equipment, how can we decrease the likelihood that difficult behaviors limit their access to VOCAs?
• What impact does a VOCA have on the opportunities and active participation of individuals with AS?

This article appears in ACN Volume 8, # 3.

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