Abstract
Parents of children with autism living in a rural state face unique challenges based on their location. These include barriers to diagnosis and treatment, driven in part by scarcity of professionals familiar with autism and long distances between services providers and family residences. Instead of focusing on these barriers, which are well known and researched, we utilized a strength-based technique known as Appreciative Inquiry (AI) to inquire how parents view and experience success for their child with autism in a rural state. Our investigation was conducted with 22 parents of children with autism ranging in age from 30 to 60 years using semi-structured interviews. Data were analyzed using thematic analysis. Results of our analysis indicated that parents envisioned and promoted success for their child over time through: (1) developing skills, (2) integrating (their) child into community, (3) building relationships, (4) advocating by parent and child, and (5) adapting to their new reality. Our findings showed that parents in a rural location define success based on their existent resources and support systems provided by clinicians, school personnel, and most importantly, support from the larger community (e.g., other parents). Parents in our study showed that behavioral interventions are not the only solution.
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References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-V. Washington, DC: American Psychiatric Publishing.
American Psychological Association (2017). Ethical principles of psychologists and code of conduct. Retrieved from: https://www.apa.org/ethics/code/ethics-code-2017.pdf
Antezana, L., Scarpa, A., Valdespino, A., Albright, J., & Richey, J. A. (2017). Rural trends in diagnosis and services for autism spectrum disorder. Frontiers in Psychology, 8, 590. https://doi.org/10.3389/fpsyg.2017.00590.
Baio, J. (2012). Prevalence of autism spectrum disorders: autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report Surveillance Summaries, 61. Doi: https://www.jstor.org/stable/24806043?seq=1&cid=pdf-reference#references_tab_contents
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., . . . White, T. (2018). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report Surveillance Summaries, 67, 1. doi:https://doi.org/10.15585/mmwr.ss6706a1.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa.
Caicedo, C. (2014). Families with special needs children: family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20, 398–407. https://doi.org/10.1177/1078390314561326.
Cantwell, J., Muldoon, O. T., & Gallagher, S. (2014). Social support and mastery influence the association between stress and poor physical health in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 35, 2215–2223. https://doi.org/10.1016/j.ridd.2014.05.012.
Center for Disease Control and Prevention. (2016). Rural health policy briefs. Retrieved from https://www.cdc.gov/ruralhealth/docs/Rural_Childrens_Mental_Brief.pdf
Christensen, D. L., Bilder, D. A., Zahorodny, W., Pettygrove, S., Durkin, M. S., Fitzgerald, R. T., et al. (2016). Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the autism and developmental disabilities monitoring network. Journal of Developmental & Behavioral Pediatrics, 37, 1–8. https://doi.org/10.1097/DBP.0000000000000235.
Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: a critical review. Autism, 18, 583–597. https://doi.org/10.1177/1362361313480277.
Durkin, M. S., Elsabbagh, M., Barbaro, J., Gladstone, M., Happe, F., Hoekstra, R. A., et al. (2015). Autism screening and diagnosis in low resource settings: challenges and opportunities to enhance research and services worldwide. Autism Research, 8, 473–476. https://doi.org/10.1002/aur.1575.
Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: a randomized trial. Pediatrics, 134, e454–e463. https://doi.org/10.1542/peds.2013-3164.
Ekas, N. V., Lickenbrock, D. M., & Whitman, T. L. (2010). Optimism, social support, and well-being in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 40, 1274–1284. https://doi.org/10.1007/s10803-010-0986-y.
Elder, J. H., Brasher, S., & Alexander, B. (2016). Identifying the barriers to early diagnosis and treatment in underserved individuals with autism spectrum disorders (ASD) and their families: a qualitative study. Issues in Mental Health Nursing, 37, 412–420. https://doi.org/10.3109/01612840.2016.1153174.
Findler, L., Jacoby, A. K., & Gabis, L. (2016). Subjective happiness among mothers of children with disabilities: the role of stress, attachment, guilt and social support. Research in Developmental Disabilities, 55, 44–54. https://doi.org/10.1016/j.ridd.2016.03.006.
Fountain, C., Winter, A. S., & Bearman, P. S. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129, e1112–e1120. https://doi.org/10.1542/peds.2011-1601.
Gallagher, S., Lee, H., & Carroll, D. (2015). The association between spirituality and depression in parents caring for children with developmental disabilities. Journal of Religion and Health, 54, 358–370. https://doi.org/10.1007/s10943-014-9839-x.
Gallagher, S., & Whiteley, J. (2013). The association between stress and physical health in parents caring for children with intellectual disabilities is moderated by children’s challenging behaviours. Journal of Health Psychology, 18, 1220–1231. https://doi.org/10.1177/1359105312464672.
Gibson, D. D. (2007). Racial disparities in the age of diagnosis of autism spectrum disorder: examining factors that may contribute to delayed diagnosis in African-American children. Praxis, 7, 34.
Gray, D. E. (2006). Coping over time: the parents of children with autism. Journal of Intellectual Disability Research, 50, 970–976. https://doi.org/10.1111/j.1365-2788.2006.00933.x.
Hammond, S. A. (2013). The thin book of appreciative inquiry. Bend: Thin Book Publishing Co..
Health Resources and Services Administration. (2016). 2016 Wyoming health center data. Retrieved from: https://bphc.hrsa.gov/uds/datacenter.aspx?year=2012&state=WY
Hennessy, J. L., & Hughes, F. (2014). Appreciative inquiry: a research tool for mental health services. Journal of Psychosocial Nursing and Mental Health Services, 52, 34–40; 58–39. doi:https://doi.org/10.3928/02793695-20140127-02
Koegel, L., Matos-Freden, R., Lang, R., & Koegel, R. (2012). Interventions for children with autism spectrum disorders in inclusive school settings. Cognitive and Behavioral Practice, 19, 401–412. https://doi.org/10.1016/j.cbpra.2010.11.003.
Kuhaneck, H. M., Burroughs, T., Wright, J., Lemanczyk, T., & Darragh, A. R. (2010). A qualitative study of coping in mothers of children with an autism spectrum disorder. Physical and Occupational Therapy in Pediatrics, 30, 340–350. https://doi.org/10.3109/01942638.2010.481662.
Kusch, J. D., Nelson, D. A., Simpson, D., Gerrits, R., & Glass, L. (2013). Using AI to understand key success features in evolving CTSAs. Clinical Translational Science, 6, 314–316. https://doi.org/10.1111/cts.12027.
Lee, Y.-J., Park, H. J., & Recchia, S. L. (2015). Embracing each other and growing together: redefining the meaning of caregiving a child with disabilities. Journal of Child and Family Studies, 24, 3662–3675. https://doi.org/10.1007/s10826-015-0175-x.
Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9. https://doi.org/10.1037/0022-006X.55.1.3.
Lovaas, O. I., & Smith, T. (2003). Early and intensive behavioral intervention for autism. Evidence-based Psychotherapies for Children and Adolescents, 325–340. doi: https://doi.org/10.1016/j.rasd.2008.08.008.
Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51, 141–153. https://doi.org/10.1352/1934-9556-51.3.141.
Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41, 1447–1453. https://doi.org/10.1097/00004583-200212000-00016.
McIntyre, L. L., & Brown, M. (2016). Examining the utilisation and usefulness of social support for mothers with young children with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 1–9. doi: https://doi.org/10.3109/13668250.2016.1262534.
Mello, M. P., Urbano, R. C., Goldman, S. E., & Hodapp, R. M. (2016). Services for children with autism spectrum disorder: comparing rural and non-rural communities. Education and Training in Autism and Developmental Disabilities, 51, 355. https://scholar.google.com/scholar?q=Mello%2C%20M.%20P.%2C%20Goldman%2C%20S.%2C%20Urbano%2C%20R.%20C.%2C%20%26%20Hodapp%2C%20R.%20M.%20%282016%29.%20Services%20for%20children%20with%20autism%20communities.%20Education%20and%20Training%20in%20Autism%20and%20Developmental%20Disabilities%2C%20in%20press. Accessed 10 March 2018.
Miodrag, N., Burke, M., Tanner-Smith, E., & Hodapp, R. (2015). Adverse health in parents of children with disabilities and chronic health conditions: a meta analysis using the parenting stress index’s health sub domain. Journal of Intellectual Disability Research, 59, 257–271. https://doi.org/10.1111/jir.12135.
Mohd Roffeei, S. H., Abdullah, N., & Basar, S. K. (2015). Seeking social support on Facebook for children with autism spectrum disorders (ASDs). International Journal of Medical Informatics, 84, 375–385. https://doi.org/10.1016/j.ijmedinf.2015.01.015.
Moody, E. J., Reyes, N., Ledbetter, C., Wiggins, L., DiGuiseppi, C., Alexander, A., et al. (2017). Screening for autism with the SRS and SCQ: variations across demographic, developmental and behavioral factors in preschool children. Journal of Autism and Developmental Disorders, 47, 3550–3561. https://doi.org/10.1007/s10803-017-3255-5.
Mottron, L. (2017). Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? European Child & Adolescent Psychiatry, 26, 815–825. https://doi.org/10.1007/s00787-017-0955-5.
Neff, K. D., & Faso, D. J. (2015). Self-compassion and well-being in parents of children with autism. Mindfulness, 6, 938–947. https://doi.org/10.1007/s12671-014-0359-2.
Norman, N., Bennett, C., Cowart, S., Felzien, M., Flores, M., Flores, R., et al. (2013). Boot camp translation: a method for building a community of solution. Journal of the American Board of Family Medicine, 26, 254–263. https://doi.org/10.3122/jabfm.2013.03.120253.
Parikh, C., Kurzius-Spencer, M., Mastergeorge, A. M., & Pettygrove, S. (2018). Characterizing health disparities in the age of autism diagnosis in a study of 8-year-old children. Journal of Autism and Developmental Disorders, 1–12. https://doi.org/10.1007/s10803-018-3500-6.
Patten, E., Baranek, G. T., Watson, L. R., & Schultz, B. (2013). Child and family characteristics influencing intervention choices in autism spectrum disorders. Focus on Autism and other Developmental Disabilities, 1–9. https://doi.org/10.1177/1088357612468028.
Patton, M. Q. (2015). Qualitative research and evaluation methods: integrating theory and practice (Vol. 4). Thousand Oaks: Sage Publications Inc..
Paul, M. H. (2017). Rural-urban disparities in the diagnosis and treatment of children with autism spectrum disorders (ASD) (doctoral dissertation). The Ohio State University. Retrived from https://etd.ohiolink.edu/!etd.send_file?accession=osu149250986729511&disposition=inline
Paynter, J., Davies, M., & Beamish, W. (2018). Recognising the “forgotten man”: fathers’ experiences in caring for a young child with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43, 112–124. https://doi.org/10.3109/13668250.2017.1293235.
Pepperell, T. A., Paynter, J., & Gilmore, L. (2016). Social support and coping, strategies of parents raising a child with autism spectrum disorder. Early Child Development and Care, 1–13. https://doi.org/10.1080/03004430.2016.1261338.
Reed, J. (2006). Appreciative inquiry: research for change. Thousand Oaks: Sage Publications, Inc..
Reichow, B., Barton, E. E., Bo,,yd, B. A., & Hume, K. (2012). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). The Cochrane Library. https://doi.org/10.1002/14651858.CD009260.pub2.
Reinke, J. S., & Solheim, C. A. (2015). Online social support experiences of mothers of children with autism spectrum disorder. Journal of Child and Family Studies, 24, 2364–2373. https://doi.org/10.1007/s10826-014-0039-9.
Robinson, C. A., York, K., Rothenberg, A., & Bissell, L. J. (2015). Parenting a child with Asperger’s syndrome: a balancing act. Journal of Child and Family Studies, 24, 2310–2321. https://doi.org/10.1007/s10826-014-0034-1.
Rogers, S., & Dawson, G. (2010). Early start Denver model for young children with autism: promoting language, learning, and engagement. New York: The Guilford Press
Siu, A. L., Force, U. S. P. S. T., Bibbins-Domingo, K., Grossman, D. C., Baumann, L. C., Davidson, K. W., et al. (2016). Screening for autism spectrum disorder in young children: US preventive services task force recommendation statement. Journal of American Medical Association, 315, 691–696. https://doi.org/10.1001/jama.2016.0018.
Skinner, A. C., & Slifkin, R. T. (2007). Rural/urban differences in barriers to and burden of care for children with special health care needs. Journal of Rural Health, 23, 150–157. https://doi.org/10.1111/j.1748-0361.2007.00082.x.
Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism Developmental Disorders, 37, 1902–1912. https://doi.org/10.1007/s10803-006-0323-7.
Williams, L. W., Matson, J. L., Beighley, J. S., & Konst, M. (2015). Ethnic disparities in early autism assessment: a large scale screening study of infants and toddlers. Journal of Developmental and Physical Disabilities, 27, 141–148. https://doi.org/10.1007/s10882-014-9406-0.
Zhang, W. Q., & Baranek, G. (2016). The impact of insurance coverage types on access to and utilization of health services for U.S. children with autism. Psychiatric Services, 67, 908–911. https://doi.org/10.1176/appi.ps.201500206.
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RLS: Executed the study and did the data analyses and wrote the study manuscript. EJM: Designed the study and collaborated on the writing and editing of the study manuscript. BR: Executed the study and collaborated on the writing and editing of the study. EBS: Transcribed the interviews and collaborated with RLS on the data analysis and writing and editing of the study manuscript.
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Ethics Statement
The University of Wyoming Institutional Review Board reviewed and approved this human subjects study.
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Informed consent was obtained from each parent participant in this study before data collection—interviews were conducted.
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Singh, R.L., Moody, E.J., Rigles, B. et al. What it Takes to Raise Children with Autism in a Rural State. Adv Neurodev Disord 3, 17–28 (2019). https://doi.org/10.1007/s41252-018-0082-4
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DOI: https://doi.org/10.1007/s41252-018-0082-4