Academic journal article American Annals of the Deaf

Serving and Supporting Young Children with a Dual Diagnosis of Hearing Loss and Autism: The Stories of Four Families

Academic journal article American Annals of the Deaf

Serving and Supporting Young Children with a Dual Diagnosis of Hearing Loss and Autism: The Stories of Four Families

Article excerpt

THE RESEARCH on young children with a dual diagnosis of hearing loss and autism spectrum disorder (ASD) is meager and scattered. Pockets of research on this population of children suggest that it is difficult to make the diagnosis of ASD in children with hearing loss. A case study design was used to examine the diagnostic process for young children and their families. The study found that the diagnosis of hearing loss was made first and that obtaining an ASD diagnosis and the appropriate services was complicated. The findings provide insight into how to support and provide intervention to families with children who have a dual diagnosis.

The dual diagnosis of hearing loss and autism spectrum disorder (ASD) has been documented for more than 20 years (Malandraki & Okalidou, 2007), yet the research on young children with this dual diagnosis is limited, providing little information on the diagnostic process, intervention, and parent support (Easterbrooks & Handley, 2005). What is known is that this co-occurrence of hearing loss and ASD in children exists and seems to be increasing (Gallaudet Research Institute, 2009). The Gallaudet Research Institute (GRI) first reported data on children with this dual diagnosis in the 2004-2005 Annual Survey of Deaf and Hard of Hearing Children and Youth (GRI, 2006), indicating that about 1.0% of all children in the survey had diagnoses of both hearing loss and ASD. As Figure 1 shows, a gradual increase occurred in subsequent years, with 1.6% of children being reported to have a dual diagnosis in the survey for 2007-2008 (GRI, 2009). It should be kept in mind that the GRI does not count every deaf or hard of hearing child in the United States, and that the actual number may have been underrepresented (Szymanski & Brice, 2008). Although there is little research explaining why this increase has occurred, the fact that the prevalence of ASD in the general population has increased dramatically suggests that there would likewise be an increase in the population of children who are deaf or hard of hearing who would receive a diagnosis of ASD. Recent reports indicate that every 1 in 110 children is diagnosed with ASD and that the rate of this diagnosis is increasing 1096-17% each year (Autism Society of America, 2010; Centers for Disease Control and Prevention, 2007).

Universal newborn hearing screening is now widely practiced in the United States. Data from the Early Hearing Detection and Intervention (EHDI) program of the Centers for Disease Control and Prevention (CDC) indicate that 97% of infants born in 48 states and two territories were screened for hearing loss in 2007 (CDC, 2007). According to the EHDI program, two states reported incomplete data, and these data were not included in the report. YoshinagaItano reported in 2004 that the age of identification of hearing loss had decreased from 19-36 months to 3-6 months. With the advent of the EHDI program, there has been a significant increase in the detection of hearing loss in infants (CDC, 2007). While the median age of ASD identification has also decreased over time (Shattuck et al., 2009), reliable identification does not occur until a child is approximately 24 months old (Baron-Cohen, Alien, & Gillberg, 1992; Moore & Goodson, 2003). This discrepancy may be due to the fact that the initial symptoms of autism, which are not evident as early as the symptoms of hearing loss, are quite subtle and can be confused with symptoms of hearing loss (or impairments associated with other disabilities). Moreover, since there is not a biomedicai or physiological test for autism, an accurate diagnosis can only be made by highly trained diagnosticians with extensive experience in assessing the disorder via systematic and thorough behavioral observations, specific ASD assessments, parent interviews, and cognitive/developmental and language testing (Moore & Goodson, 2003). Consequently, it appears that for most young children who present both hearing loss and ASD, the hearing loss is generally identified first. …

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