EXPLORING HOW FAMILY ACCOMMODATION INFLUENCES REPETITIVE BEHAVIORS IN CHILDREN WITH AUTISM: A MIXED-METHODS STUDY
Keywords:
Children with ASD; Repetitive; Restricted; Behaviours; Family Accommodation.Abstract
Diagnosis of Autism Spectrum Disorder (ASD) is significantly influenced by restricted and repetitive behaviors and interests (RRBI). These behaviors frequently pose the most substantial obstacles in the daily lives of children with ASD and their families. Nevertheless, there is a scarcity of research that examines family accommodation behaviors (FAB) within the ASD community, and the relationship between these accommodations and the specific features of the children's behaviours is as yet undecided. Utilizing a sequential mixed-methods approach, the objective of this study was to explore the connection between RRBI and FAB in order to acquire a better understanding of the lived experiences of parents with their children's RRBI. The investigation was implemented in two phases: a quantitative phase and a qualitative phase. Initially, 29 parents of autistic children aged 5–13 accomplished questionnaires. Subsequently, 15 of these parents were interviewed concerning their children's RRBI and FAB. In the qualitative phase, extensive phenomenological interviews were conducted. It was discovered that there is a robust positive association between RRBI and FAB, as well as between their sub-components. These findings were further substantiated by the qualitative data, which provided illustrative examples of the compromises that families make in order to address RRBI-related issues. Overall, the investigation underscores the significance of addressing both autism-related behaviors and the experiences of parents, as each influences and is influenced by the other, thereby emphasizing the interconnectedness of RRBI and FAB.
References
American Academy of Pediatrics. (2012). Patient- and family-centered care and the pediatrician’s role. Pediatrics, 129(2), 394–404. https://doi.org/10.1542/peds.2011-3084
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596
Benito, K. G., Caporino, N. E., Frank, H. E., Ramanujam, K., Garcia, A., Freeman, J., Kendall, P. C., Geffken, G., & Storch, E. A. (2015). Development of the pediatric accommodation scale: Reliability and validity of clinician and parent-report measures. Journal of Anxiety Disorders, 29, 14–24. https://doi.org/10.1016/j.janxdis.2014.10.004
Bishop, F. L. (2015). Using mixed methods research designs in health psychology: An illustrated discussion from a pragmatist perspective. British Journal of Health Psychology, 20(1), 5–20. https://doi.org/10.1111/bjhp.12103
Bodfish JW, Symons FJ, Parker DE, Lewis MH. Varieties of repetitive behavior in autism: Comparisons to mental retardation. J Autism Dev Disord. (2000) 30:237– 43. https://doi:10.1023/A: 100559650285527
Bodfish, J., Symons, F., Parker, D., & Lewis, M. (2000). Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30(3), 237–243. https://doi.org/10.1023/A:1005594501244
Bury, S. M., Hedley, D., & Uljarević, M. (2021). Restricted, repetitive behaviours and interests in the workplace: Barriers, advantages, and an individual difference approach to autism employment. In E. Gal & N. Yirmiya (Eds.), Repetitive and Restricted Behaviors and Interests in Autism Spectrum Disorders (pp. 253–270). Springer. https://doi.org/10.1007/978-3-030-61973-6_13
Caporino, N. E., Morgan, J., Beckstead, J., Phares, V., Murphy, T. K., & Storch, E. A. (2012). A structural equation analysis of family accommodation in pediatric obsessive-compulsive disorder. Journal of Anxiety Disorders, 26(1), 133–143. https://doi.org/10.1016/j.janxdis.2011.09.010
Casillas, L. M., Elkins, S. R., Walther, C. A., Schanding, G. T., Jr., & Short, M. B. (2021). Helicopter parenting style and parental accommodations: The moderating role of internalizing and externalizing symptomatology. The Family Journal, 29(3), 245–255. https://doi.org/10.1177/1066480720979820
Centers for Disease Control and Prevention. (2023). Prevalence and Characteristics of Autism Spectrum Disorder among Children Aged 8 Years: Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. U.S. Department of Health and Human Services, Washington, DC, USA. https://doi.org/10.15585/mmwr.mm7203a1
Charmaz, K. (2014). Constructing Grounded Theory: A Practical Guide through Qualitative Analysis (2nd ed.). Sage.
Corbin, J., & Strauss, A. (2015). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory (4th ed.). Sage.
Creswell, J. W., Klassen, A. C., Plano Clark, V. L., & Smith, K. C. (2011). Best Practices for Mixed Methods Research in the Health Sciences. National Institutes of Health: Bethesda, MD, USA. Retrieved from https://www.csun.edu/sites/default/files/best_prac_mixed_methods.pdf
David, A. (2021). Parents’ Perspectives on the Implications of Medical Cannabis Intervention on the Behavior and Participation of Their Child with ASD and on Family Accommodations. Master’s Thesis, University of Haifa, University of Haifa Research Repository. Retrieved from https://haifa.userservices.exlibrisgroup.com/discovery/delivery/972HAI_MAIN:HAU/12253212360002791?lang=he&viewerServiceCode=AlmaViewer
Feldman, I., Koller, J., Lebowitz, E. R., Shulman, C., Ben Itzchak, E., & Zachor, D. A. (2019). Family accommodation in autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(9), 3602–3610. https://doi.org/10.1007/s10803-019-03964-5
Flessner, C. A., Freeman, J. B., Sapyta, J., Garcia, A., Franklin, M. E., March, J. S., & Foa, E. (2011). Predictors of parental accommodation in pediatric obsessive-compulsive disorder: Findings from the pediatric obsessive-compulsive disorder treatment study (POTS) trial. Journal of the American Academy of Child and Adolescent Psychiatry, 50(7), 716–725. https://doi.org/10.1016/j.jaac.2011.03.021
Gafni-Lachter, L. R. (2015). Better Together: Advancing Family Centered Care (Ph.D. Thesis). Boston University, Boston, MA, USA.Gal, E. (2011). Nosology and theories of repetitive and restricted behaviors and interests. In J. L. Matson & P. Sturmey (Eds.), International Handbook of Autism and Pervasive Developmental Disorders (pp. 115–125). Springer. https://doi.org/10.1007/978-1-4419-8065-6_8
Gal, E., & Ben-Sasson, A. (2021). “Rep-Mod”: An intervention model for restricted, repetitive behaviours and interests. In E. Gal & N. Yirmiya (Eds.), Repetitive and Restricted Behaviors and Interests in Autism Spectrum Disorders (pp. 235–252). Springer. https://doi.org/10.1007/978-3-030-61973-6_12
Goldfarb, Y., Zafrani, O., & Gal, E. (2021). “It’s in my nature”: Subjective meanings of repetitive and restricted behaviors and interests voiced by adults with autism spectrum disorders. In E. Gal & N. Yirmiya (Eds.), Repetitive and Restricted Behaviors and Interests in Autism Spectrum Disorders (pp. 13–29). Springer. https://doi.org/10.1007/978-3-030-61973-6_2
Grace, P. E., & Kaufman, E. K. (2013). Effecting change through storytelling. Journal of Sustainability Education, 4. Retrieved from http://www.jsedimensions.org/wordpress/content/effecting-change-through-storytelling-2_2013_02/
Harrop, C., McConachie, H., Emsley, R., Leadbitter, K., & Green, J. (2014). Restricted and repetitive behaviors in autism spectrum disorders and typical development: Cross-sectional and longitudinal comparisons. Journal of Autism and Developmental Disorders, 44(5), 1207–1219. https://doi.org/10.1007/s10803-013-1978-1
Holland, B. Y. (2020). Mealtime Experiences of Mothers with Children Diagnosed with Autism Spectrum Disorder: A Qualitative Case Study. Publication No. 28028436. Ph.D. Thesis, Capella University, Minneapolis, MN, USA. ProQuest Dissertations and Theses Global.
Howard, K., Katsos, N., & Gibson, J. (2019). Using interpretative phenomenological analysis in autism research. Autism, 23(7), 1871–1876. https://doi.org/10.1177/1362361319829963
Johnco, C., Storch, E. A., Oar, E., McBride, N. M., Schneider, S., Silverman, W. K., & Lebowitz, E. R. (2021). The role of parental beliefs about anxiety and attachment on parental accommodation of child anxiety. Research in Child and Adolescent Psychopathology, 50(1), 51–62. https://doi.org/10.1007/s10802-020-00687-8
Kellegrew, D. H. (2000). Constructing daily routines: A qualitative examination of mothers with young children with disabilities. American Journal of Occupational Therapy, 54(3), 252–259. https://doi.org/10.5014/ajot.54.3.252
Kerns, C. E., Pincus, D. B., McLaughlin, K. A., & Comer, J. S. (2017). Maternal emotion regulation during child distress, child anxiety accommodation, and links between maternal and child anxiety. Journal of Anxiety Disorders, 50, 52–59. https://doi.org/10.1016/j.janxdis.2017.05.007
Lam, K. S., & Aman, M. G. (2007). The Repetitive Behavior Scale-Revised: Independent validation in individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37(5), 855–866. https://doi.org/10.1007/s10803-006-0213-z
Lebowitz, E. R., Panza, K. E., Su, J., & Bloch, M. H. (2012). Family accommodation in obsessive–compulsive disorder. Expert Review of Neurotherapeutics, 12(2), 229–238. https://doi.org/10.1586/ern.11.202
Lebowitz, E. R., Scharfstein, L. A., & Jones, J. (2014). Comparing family accommodation in pediatric obsessive-compulsive disorder, anxiety disorders, and nonanxious children. Depression and Anxiety, 31(11), 1018–1025. https://doi.org/10.1002/da.22285
Lebowitz, E. R., Woolston, J., Bar-Haim, Y., Calvocoressi, L., Dauser, C., Warnick, E., ... Scahill, L. (2013). Family accommodation in pediatric anxiety disorders. Depression and Anxiety, 30(1), 47–54. https://doi.org/10.1002/da.22004
Lebowitz, E.R.; Panza, K.E.; Su, J.; Bloch, M.H. Family accommodation in obsessive–compulsive disorder. Expert Rev. Neurother. 2012, 12, 229–238.
Lebowitz, E.R.; Woolston, J.; Bar-Haim, Y.; Calvocoressi, L.; Dauser, C.; Warnick, E.; Scahill, L.; Chakir, A.R.; Schner, T.; Hermes, H.; et al. Family accommodation in pediatric anxiety disorders. Depress. Anxiety 2013, 30, 47–54.
Leekam, S. R., Prior, M. R., & Uljarević, M. (2011). Restricted and repetitive behaviors in autism spectrum disorders: A review of research in the last decade. Psychological Bulletin, 137(4), 562–593. https://doi.org/10.1037/a0023341
Lewis, M. H., & Bodfish, J. W. (1998). Repetitive behavior disorders in autism. Mental Retardation and Developmental Disabilities Research Reviews, 4(2), 80–89. https://doi.org/10.1002/(SICI)1098-2779(1998)4:2<80::AID-MRDD2>3.0.CO;2-3
Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. C., 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. Journal of Autism and Developmental Disorders, 30(3), 205–223. https://doi.org/10.1023/A:1005592401947
Lucyshyn, J. M., Irvin, L. K., Blumberg, E. R., Laverty, R., Horner, R. H., & Sprague, J. R. (2004). Validating the construct of coercion in family routines: Expanding the unit of analysis in behavioral assessment with families of children with developmental disabilities. Research and Practice for Persons with Severe Disabilities, 29(2), 104–121. https://doi.org/10.2511/rpsd.29.2.104
O’Connor, E. E., Holly, L. E., Chevalier, L. L., Pincus, D. B., & Langer, D. A. (2020). Parent and child emotion and distress responses associated with parental accommodation of child anxiety symptoms. Journal of Clinical Psychology, 76(8), 1390–1407. https://doi.org/10.1002/jclp.22950
O’Nions, E., Happé, F., Evers, K., Boonen, H., & Noens, I. (2018). How do parents manage irritability, challenging behaviour, noncompliance and anxiety in children with autism spectrum disorders? A meta-synthesis. Journal of Autism and Developmental Disorders, 48(4), 1272–1286. https://doi.org/10.1007/s10803-017-3445-4
O’Nions, E., Happé, F., Segers, J., Viding, E., & Noens, I. (2021). Parenting goals: Links with parenting strategies in caregivers of children with autism spectrum disorder. Advances in Neurodevelopmental Disorders, 5(1), 21–34. https://doi.org/10.1007/s41252-020-00187-4
Russell, A. J., Jassi, A., Fullana, M. A., Mack, H., Johnston, K., Heyman, I., Murphy, D. G., & Mataix-Cols, D. (2013). Cognitive behavior therapy for comorbid obsessive-compulsive disorder in high-functioning autism spectrum disorders: A randomized controlled trial. Depression and Anxiety, 30(7), 697–708. https://doi.org/10.1002/da.22101
Sethi, C., Harrop, C., Zhang, W., Pritchett, J., Whitten, A., & Boyd, B. A. (2019). Parent and professional perspectives on behavioral inflexibility in autism spectrum disorders: A qualitative study. Autism, 23(6), 1236–1248. https://doi.org/10.1177/1362361318792430
Settipani, C. A., & Kendall, P. C. (2017). The effect of child distress on accommodation of anxiety: Relations with maternal beliefs, empathy, and anxiety. Journal of Clinical Child & Adolescent Psychology, 46(6), 810–823. https://doi.org/10.1080/15374416.2016.1210350
Shimshoni, Y., Omer, H., & Lebowitz, E. R. (2022). Non-violent resistance and family accommodation: A trans-diagnostic solution to a highly prevalent problem. Family Process, 61(1), 43–57. https://doi.org/10.1111/famp.12699
Storch, E. A., Zavrou, S., Collier, A. B., Ung, D., Arnold, E. B., Mutch, P. J., Murphy, T. K. (2015). Preliminary study of family accommodation in youth with autism spectrum disorders and anxiety: Incidence, clinical correlates, and behavioral treatment response. Journal of Anxiety Disorders, 34, 94–99. https://doi.org/10.1016/j.janxdis.2015.06.005
Tavakol M, Dennick R. Making sense of Cronbach’s alpha. Int J Med Educ. (2011) 2:53–5. doi: 10.5116/ijme.4dfb.8dfd
Tian, J., Gao, X., & Yang, L. (2022). Repetitive restricted behaviors in autism spectrum disorder: From mechanism to development of therapeutics. Frontiers in Neuroscience, 16, Article 780407. https://doi.org/10.3389/fnins.2022.780407
Tilford, M. J., Payakachat, N., Kuhlthau, K. A., Pyne, J. M., Kovacs, E., Bellando, J., ... Frye, R. E. (2015). Treatment for sleep problems in children with autism and caregiver spillover effects. Journal of Autism and Developmental Disorders, 45(11), 3613–3623. https://doi.org/10.1007/s10803-015-2526-9
Turner, M. A. (1999). Repetitive behaviour in autism: A review of psychological research. Journal of Child Psychology and Psychiatry, 40(6), 839–849. https://doi.org/10.1111/1469-7610.00496
Uljarević, M., Alvares, G. A., Steele, M., Edwards, J., Frazier, T. W., Hardan, A. Y., & Whitehouse, A. J. (2022). Toward better characterization of restricted and unusual interests in youth with autism. Autism, 26(4), 1296–1304. https://doi.org/10.1177/13623613211047187
Uljarević, M., Hedley, D., Linkovski, O., & Leekam, S. R. (2021). Underlying mechanisms of restricted and repetitive behaviors across typical and atypical development. In E. Gal & N. Yirmiya (Eds.), Repetitive and Restricted Behaviors and Interests in Autism Spectrum Disorders (pp. 61–75). Springer. https://doi.org/10.1007/978-3-030-61973-6_4
Yaari, M., & Dissanayake, C. (2021). Early intervention and restricted repetitive behaviours and interests. In E. Gal & N. Yirmiya (Eds.), Repetitive and Restricted Behaviors and Interests in Autism Spectrum Disorders (pp. 215–233). Springer. https://doi.org/10.1007/978-3-030-61973-6_11
Zavrou, S., Rudy, B., Johnco, C., Storch, E. A., & Lewin, A. B. (2018). Preliminary study of family accommodation in 4–7-year-olds with anxiety: Frequency, clinical correlates, and treatment response. Journal of Mental Health, 28(4), 365–371. https://doi.org/10.1080/09638237.2018.1536704
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2024 PAKISTAN ISLAMICUS (An International Journal of Islamic & Social Sciences)
This work is licensed under a Creative Commons Attribution 4.0 International License.
This work is licensed under a Creative Commons Attribution 4.0 International License.
