title: Needs of parents of children who are deaf/hard of hearing with autism spectrum disorder.
abstract: Little is known about children who are deaf or hard of hearing (D/HH) with a coexisting autism spectrum disorder (ASD). The objective of our study was to understand the needs of children who are D/HH with coexisting ASD. We posed questions for group discussion about diagnostic process, impact of dual diagnosis on communication, and helpful resources. Four parents of three children participated. Challenges in the diagnostic process included the challenges in the appropriateness of the evaluation tools and the limited expertise of the professionals performing the evaluations. Broad-based special educational settings were perceived as helpful. Families described a range of broad-based communication strategies (spoken, sign, and written language, augmentative communication approaches). Families prioritized a focus on behavior and day-to-day functioning over academic performance. Families recognized the lack of professionals who understand ASD and deafness but have found the internet and technology as a mechanism to connect to information and families with similar needs.
authors.affiliation: Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue ML 4002, Cincinnati, OH 45229. susan.wiley@cchmc.org.
authors.forename: Susan
authors.initials: S
authors.lastname: Wiley
authors.forename: Samantha
authors.initials: S
authors.lastname: Gustafson
authors.forename: Justin
authors.initials: J
authors.lastname: Rozniak
mesh_terms: D001294:Attitude to Health; D002648:Child; D002653:Child Behavior Disorders / Q000150:complications; D002659:Child Development Disorders, Pervasive / Q000150:complications*; D003142:Communication; D003638:Deafness / Q000150:complications; D005192:Family Health; D005260:Female; D017144:Focus Groups; D034381:Hearing Loss / Q000150:complications*; D006801:Humans; D008297:Male; D020380:Needs Assessment; D010290:Parents / Q000523:psychology*; D010353:Patient Education as Topic