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ABSTRACT INFORMATION
Title: 'Family Perspectives on Autism Spectrum Disorder and Hearing Loss' Track: 7 - Family Perspectives and Support Keyword(s): Autism Spectrum Disorder, Family Perspectives Learning Objectives: Participants will describe the impact having a child with hearing loss and autism spectrum disorder on the family. Abstract: Background: There is a significant lack of evidence guiding the diagnosis and interventions for children with a dual diagnosis of permanent hearing loss (PHL) and autism spectrum disorder (ASD). The needs of children and families with both PHL and ASD are minimally described and primarily rely on small case reports. Objective: The objective of this study was to gain an understanding of the experience of families with children who have PHL with a co-existing ASD. Methods: A focus group held at a tertiary care pediatric institution with parents of children diagnosed with ASD and PHL by the Division of Developmental and Behavioral Pediatrics and the Division of Audiology ac Cincinnati Children’s Hospital Medical Center. Topics discussed included perspectives on diagnostic experience, communication needs, educational experiences/needs, family needs, community resource experiences/needs. Results: Three families participated in the focus group. Participants expressed the development social skills and functional skill as a priority for their children. Parents also identified the internet as a useful resource for both information and family-to-family networking. Participants discussed the impact of the dual diagnosis on the family and shared their diagnostic experiences. Although the structure of the educational system was praised, areas such as extended school year and a need for good communication from school to home in order to be able to follow-through with activities to support their child’s development at home. Parents expressed a desire for medical and educational providers to have expertise in both PHL and ASD. Conclusions: Families found educational supports and the internet as helpful resources. They noted the importance of better collaboration between professionals from the fields of deaf education and autism specialists. Future research should include perspectives from families of varying backgrounds and from areas outside major cities. Presentation: This presentation has not yet been uploaded or the speaker has opted not to make the presentation available online. Handouts: Handout is not Available
PRESENTER(S) / AUTHOR(S) INFORMATION
Justin Rozniak - Author      Other Affiliations: Cincinnati Children’s Hospital       Justin Rozniak is a Child Life Specialist at Cincinnati Children’s Hospital Medical Center, where he has worked for the past 5 years. Justin received his bachelor’s degree in Psychology and Family Life in 2008 from Concordia University in Ann Arbor Michigan in 2008. He is currently enrolled at Concordia University Nebraska to obtain his Masters in Public Health. Justin was a LEND trainee at Cincinnati Children’s for the 2011-2012 school year, where he was the first Child Life Specialist to enter this training.       ASHA DISCLOSURE: Financial - Nonfinancial - Rebecca Walterman - Author University of Cincinnati      Other Affiliations: University of Cincinnati       Rebecca Walterman participated in the 2011-2012 LEND program at Cincinnati Children's Hospital as a social work student       ASHA DISCLOSURE: Financial - Nonfinancial - Susan Wiley - Author Cincinnati Children's Hospital Medical Center      Credentials: M.D., Developmental Pediatrician, Professor       Dr. Susan Wiley is a developmental pediatrician with expertise in children who are deaf/hard of hearing. She has many years of experience serving children with multiple disabilities.       ASHA DISCLOSURE: Financial - Nonfinancial - Samantha Gustafson - Primary Presenter,Author Vanderbilt University      Credentials: Au.D., CCC-A       Samantha Gustafson, AuD, CCC-A, is currently a PhD student at Vanderbilt University. She earned her B.S. in Speech and Hearing Science (2008) and her Doctorate of Audiology (2012) from Arizona State University. During her graduate studies, she worked as a research assistant in the Pediatric Amplification Lab at Arizona State University and also trained at Boys Town National Research Hospital in the Hearing Aid Research Lab. Samantha completed her clinical externship at Cincinnati Children's Hospital where she also served as a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) trainee. Her past research experiences include the effectiveness of advanced signal processing in children's hearing aids, procedures for incorporating real-ear measures into hearing aid fittings, and clinical measures of middle ear pathology in typically developing infants and children with Down syndrome. Her research interests are in individualizing audiological approaches to fit hearing aids for children with varying cognitive and developmental disabilities.       ASHA DISCLOSURE: Financial - Nonfinancial -