To be born deaf and blind creates both communicative and language acquisition barriers for a child. Although case studies, research, and practical reports have described the severe communicative delay that children with congenital deafblindness (CDB) often experience, to date, no population studies have given a systematic overview of the characteristics of communication, language use, and language acquisition. This study investigates modes of communication and level of language acquisition among 71 children with CDB using the Rowland Communication Matrix and a questionnaire form. Results show heterogeneity in use of communication mode, vocabulary, and level of language development. Communication was distributed across modalities with 23% using tactile language, 32% oral language, and 39% visual sign language. With regard to the level of language acquisition, 41% used pre-verbal communication, 42% verbal communication (tactile, visual, or oral) but with delay, and 18% verbal communication (tactile, visual, or oral) without any delay. Similar heterogeneity was reflected on vocabulary count and score on the Rowland Communication Matrix. Children with CDB are not a uniform group, and more research is needed in order to map out the diversity found.
People with congenital deafblindness (CDB) are a heterogenic group, and CDB is defined in a variety of ways in the scientific literature. In this study, we aim to examine whether some of the heterogeneity may be more easily resolved from the perspective of ability than from the perspective of impairment. In order to do this, we take as a starting point for our investigations the communication systems that are used and the different sense modalities they require. Information about almost the entire known population of children with CDB in Denmark (age = 3–18 years, N = 71) was collected using a questionnaire form, covering degree of visual and hearing impairments, intellectual disability, level of expressive communication and use of communication systems. No correlation was found between severity of CDB based on degree of sensory impairment and level of intellectual and communicative disability within the population. However, whether or not the child with CDB was able to make use of residual senses to access a linguistic culture (spoken or signed) correlated significantly with both cognitive and communicative ability. In addition, the two groups had inverse correlations between number of systems used for communication and communicative ability. The actual systems used for communication may be useful for categorizing people with CDB into severity subgroups for scientific study and for intervention planning. In addition, the acquisition of a tactile language for the subgroup of people with CDB who do not utilize a visual or auditory linguistic culture should be given special attention in research and practice.
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