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DOI: 10.3766/jaaa.16139
Understanding the Needs of Families of Children Who Are Deaf/Hard of Hearing with an Autism Spectrum Disorder
Publication History
Publication Date:
29 May 2020 (online)
![](https://www.thieme-connect.de/media/10.1055-s-00046128/201805/lookinside/thumbnails/10-3766-jaaa-16139_00378-1.jpg)
Abstract
Background:
There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD). Much of our current knowledge is founded in case report studies with very small numbers of children with the dual diagnosis.
Purpose:
The purpose of this study was to gain an understanding of the factors relating to caregiver stress and needs (i.e., supports and interventions) in families of children who are Deaf/HH with ASD.
Research Design:
Comparison groups of families of children who were Deaf/HH, families with a hearing child with ASD, and families of children who were Deaf/HH with ASD were administered standardized questionnaires of stress with brief qualitative questionnaires focusing on family-identified needs.
Study Sample:
Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD.
Data Collection and Analysis:
Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire.
Results:
Families of children who were Deaf/HH with ASD had a higher median total stress score on the PSI as compared to families of children who were Deaf/HH only (58.5 versus 41.5, respectively; p = 0.02) and higher Child Domain scores (60 versus 43, respectively; p = 0.02), indicating higher levels of stress in families of children with the dual diagnosis. The families of children who were Deaf/HH with ASD reported similar levels of stress as families of children with ASD.
Conclusions:
Families of children who are Deaf/HH with an ASD experience stress and describe similar needs and priorities as families of hearing children with ASD. This suggests the needs related to having an autism spectrum disorder are of high priority in families of children with the dual diagnosis.
Presented at 2014 Early Hearing Detection and Intervention Annual Conference in Jacksonville, FL, April 15th, 2014.
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REFERENCES
- Abidin RR. 1995. Parenting Stress Index: Professional Manual. Odessa, Ukraine: Psychological Assessment Resources, Inc.;
- Abidin RR, Jenkins CL, McGaughey MC. 1992; The relationship of early family variables to children’s subsequent behavioral adjustment. J Clin Child Psychol 21: 60-69
- American Psychiatric Association (APA) 2000. Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR. 4th ed. Washington, DC: APA;
- Baker-Ericzen MJ, Brookman-Frazee L, Stahmer A. 2005; Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Res Pract Persons Severe Disabl 30 (04) 194-204
- Beals K. 2004; Early intervention in deafness and autism: one family’s experiences, reflections, recommendations. Infants Young Child 17: 284-290
- Boshoff K, Gibbs D, Phillips RL, Wiles L, Porter L. 2016; Parents voices: why and how we advocate. A meta-synthesis of parent's experiences of advocating for their child with autism spectrum disorder. Child Care Health Dev 42 (06) 784-797
- Calderon R, Greenberg MT. 1999; Stress and coping in hearing mothers of children with hearing loss: factors affecting mother and child adjustment. Am Ann Deaf 144 (01) 7-18
- Dirks E, Uilenburg N, Rieff C. 2016; Parental stress among toddlers with moderate hearing loss. Res Dev Disabil 55: 27-36
- Donovan AM. 1988; Family stress and ways of coping with adolescents who have handicaps: maternal perceptions. Am J Ment Retard 92 (06) 502-509
- Dumas JE, Wolf LC, Fisman SN, Culligan A. 1991; Parenting stress, child behavior problems, and dysphoria in parents of children with autism, Down syndrome, behavior disorders, and normal development. Exceptionality 2: 97-110
- Garcia R, Turk J. 2007; The applicability of Webster-Stratton Parenting Programmes to deaf children with emotional and behavioural problems, and autism, and their families: annotation and case report of a child with autistic spectrum disorder. Clin Child Psychol Psychiatry 12 (01) 125-136
- Gilliam JE. 1995. Gilliam Autism Rating Scale. Austin, TX: Pro-Ed;
- Hastings RP, Johnson E. 2001; Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. J Autism Dev Disord 31 (03) 327-336
- Konstantareas MM, Homatidis S. 1989; Assessing child symptom severity and stress in parents of autistic children. J Child Psychol Psychiatry 30 (03) 459-470
- Kurtzer-White E, Luterman D. 2003; Families and children with hearing loss: grief and coping. Ment Retard Dev Disabil Res Rev 9 (04) 232-235
- Lecavalier L, Leone S, Wiltz J. 2006; The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. J Intellect Disabil Res 50 Pt 3 172-183
- Lim LH, Xiang L, Wong NL, Yuen KC, Li R. 2014; Validation of the Paediatric Hearing Impairment Caregiver Experience (PHICE) Questionnaire. Ann Acad Med Singapore 43 (07) 362-370
- Lord C, Risi S, Lambrecht L, Cook Jr EH, Leventhal BL, DiLavore PC, Pickles A, Rutter M. 2000; The autism diagnostic observation schedule-generic: a standard measure of social and communication deficits associated with the spectrum of autism. J Autism Dev Disord 30 (03) 205-223
- Lord C, Rutter M, DiLavore PC, Risi S. 1999. Autism Diagnostic Observation Schedule-WPS (ADOS-WPS). Los Angeles, CA: Western Psychological Services;
- Malandraki G, Okalidou A. 2007; The application of PECS in a deaf child with autism: a case study. Focus Autism Other Dev Disabl 22: 23
- McCracken W, Young A, Tattersall H. 2008; Universal newborn hearing screening: parental reflections on very early audiological management. Ear Hear 29 (01) 54-64
- Meadow-Orlans KP, Steinberg AG. 1993; Effects of infant hearing loss and maternal support on mother-infant interactions at 18 months. J Appl Dev Psychol 14: 407-426
- Meinzen-Derr J, Lim LHY, Choo DI, Buyniski S, Wiley S. 2008; Pediatric hearing impairment caregiver experience: impact of duration of hearing loss on parental stress. Int J Pediatr Otorhinolaryngol 72 (11) 1693-1703
- Mulligan J, Steel L, Macculoch R, Nicholas D. 2010; Evaluation of an information resource for parents of children with autism spectrum disorder. Autism 14 (02) 113-126
- Myck-Wayne J, Robinson S, Henson E. 2011; Serving and supporting young children with a dual diagnosis of hearing loss and autism: the stories of four families. Am Ann Deaf 156 (04) 379-390
- Pipp-Siegel S, Sedey AL, Yoshinaga-Itano C. 2002; Predictors of parental stress in mothers of young children with hearing loss. J Deaf Stud Deaf Educ 7 (01) 1-17
- Tomanik S, Harris GE, Hawkins J. 2004; The relationship between behaviours exhibited by children with autism and maternal stress. J Intellect Dev Disabil 29 (01) 16-26
- Weiss MJ. 2002; Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism 6 (01) 115-130
- Whitaker P. 2002; Supporting preschool children with autism: what parents want and what helps. Autism 6 (04) 411-426
- Wilcoxon F. 1945; Individual comparisons by ranking methods. Biom Bull 1 (06) 80-83
- Wiley S, Arjmand E, , Jareenmeinzen-Derr, Dixon M. 2011; Findings from multidisciplinary evaluation of children with permanent hearing loss. Int J Pediatr Otorhinolaryngol 75 (08) 1040-1044
- Wiley S, Gustafson S, Rozniak J. 2014; Needs of parents of children who are deaf/hard of hearing with autism spectrum disorder. J Deaf Stud Deaf Educ 19 (01) 40-49
- Wong C, Odom SL, Hume KA, Cox AW, Fettig A, Kucharczyk S, Brock ME, Plavnick JB, Fleury VP, Schultz TR. 2015; Evidence-based practices for children, youth, and young adults with autism spectrum disorder: a comprehensive review. J Autism Dev Disord 45 (07) 1951-1966
- Young A, Tattersall H. 2007; Universal newborn hearing screening and early identification of deafness: parents’ responses to knowing early and their expectations of child communication development. J Deaf Stud Deaf Educ 12 (02) 209-220