The assessment needs of families with children who are deaf and hard of hearing referred for an autism spectrum disorder evaluation

Abstract

With the increasing prevalence of autism spectrum disorder (ASD), clinicians and schools are receiving a larger number of assessment referrals for eligibility or diagnostic clarification of ASD in children who are deaf and hard of hearing (D/HH).Meeting this increasing demand is often difficult given not all assessment professionals seek specialized ASD training and even fewer have experience working with D/HH children.Therefore, families are disadvantaged because of the lack of assessment professionals who specialize in both these areas.School psychologists without such experience are at-risk for misinterpreting or missing key diagnostic information. This study explored the assessment experiences of four families of D/HH children who have ASD. Hearing parents' and D/HH parents' perspectives were gathered to explore the familyneeds. An open-ended survey asked parents to recall the assessment techniques utilized during the process and relate how their child's language skills were accounted for by the clinician. Parent responses revealed interpreters were utilized for various reasons unique to each family. Families expressed difficulty finding ASD specialists who had experience working with D/HH children. This study highlights the importance of selecting a trained interpreter and emphasizes the need of more professionals who have experience assessing ASD in D/ HH children. K E Y W O R D S American sign language, ASD, assessment, autism, D/HH (ADOS-2; Lord et al., 2012) is often referred to as the gold standard instrument for diagnosing ASD and is considered an essential part when conducting best practices in assessment of autism (Aiello et al., 2017). The ADOS-2, however, falls in line with most standardized assessments in its lack of standardization with the D/HH population. The validation sample of the ADOS-2 did not include individuals who were D/HH (Lord et al., 2012) andtest developers did not include administration modifications for ASL within the administration manual.Furthermore, because the ADOS-2 relies on understanding the child's level of spoken language to determine the proper module for administration, test developers caution its use with children whose main mode of communication is sign language. The ADOS-2 authors explicitly indicate that sign language not be utilized when determining the appropriate module, which would make most children who are D/HH and utilize sign language, regardless of their fluency in ASL, fall in Module 1, preverbal. This approach could result in developmentally inappropriate tasks being administered to a child who actually has more language skills than spoken language would suggest.Little research has been conducted on the efficacy of using the ADOS-2 to diagnose autism in children who are D/HH. In a retrospective chart review sample of 30 children who were D/HH and diagnosed with autism at an academic medical center, the authors determined that only two children were administered the ADOS-2 as part of the diagnostic evaluation; however, results of these administrations wer...

The Implementation of Assistive Technology with a Deaf Student with Autism

“…Denmark (2011) stated that the Autism Diagnostic Observation Schedule-Generic (ADOS-G) was the only assessment for ASD in deaf children. However, Dale and Neild (2020) noted, "The ADOS-2, however, falls in line with most standardized assessments in its lack of standardization with the deaf and hard of hearing (D/HH) population. The validation sample of the ADOS-2 did not include individuals who were D/HH" (p. 477).…”

“…Therefore, there is no standardized psychometrically validated assessment for diagnosing these conditions, and the ADOS-2 is inappropriate for deaf children (Dale & Neild, 2020). When autism is diagnosed late in deaf children, it makes it more difficult for parents and educators to distinguish the characteristics of deafness from those of autism (Szarkowski & Johnston, 2018) whilst also limiting the resources available for parents and teachers to identify autism and deafness (Dale & Neild, 2020;Szarkowski & Johnston, 2018;Szymanski & Brice, 2008). Szymanski and Brice (2008) demonstrated that the characteristics of autism can appear similar to a loss of hearing ability, and vice versa.…”

“…Very few studies have examined the dialectal insufficiencies of signing in deaf children with autism (Carr, 1979;Fan, 2012;Shield & Meier, 2013;Quinto-Pozos & Cooley, 2020). Other researchers have solely focused on nonverbal autism, neglecting possible deafness, as there is no specific diagnosis for deaf children with autism (Dawson & Toth, 2006;Denmark, 2011;Dale & Neild, 2020). Meinzen-Derra et al (2014) noted that both hearing loss alone and ASD alone can lead to communication and social delays.…”

“…Dawson and Toth (2006) listed other social impairments that often present with ASD, including difficulties with eye contact, joint attention, facial expression, and understanding of nonverbal communication; lack of interaction with peers; and lack of social reciprocity. Communication impairments do not solely involve language delays, but also failures in the use of language (Dale & Neild, 2020). Individuals with ASD often display atypical speech patterns, including immediate or delayed echolalia, duplication of expressions in an abnormal manner, and infrequent prosody, among others (Dawson & Toth, 2006).…”