Advances in Neurodevelopmental Disorders

, Volume 3, Issue 1, pp 17–28 | Cite as

What it Takes to Raise Children with Autism in a Rural State

  • Reshmi L. SinghEmail author
  • Eric J. Moody
  • Bethany Rigles
  • Elyssa B. Smith


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.


Autism Appreciative inquiry Rural Success Parents 


Author Contributions

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.

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no competing interests.

Ethics Statement

The University of Wyoming Institutional Review Board reviewed and approved this human subjects study.

Informed Consent Statement

Informed consent was obtained from each parent participant in this study before data collection—interviews were conducted.


  1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-V. Washington, DC: American Psychiatric Publishing.CrossRefGoogle Scholar
  2. American Psychological Association (2017). Ethical principles of psychologists and code of conduct. Retrieved from: Scholar
  3. 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. Scholar
  4. 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: Scholar
  5. 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:
  6. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Scholar
  7. Caicedo, C. (2014). Families with special needs children: family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20, 398–407. Scholar
  8. 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. Scholar
  9. Center for Disease Control and Prevention. (2016). Rural health policy briefs. Retrieved from Scholar
  10. 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. Scholar
  11. Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: a critical review. Autism, 18, 583–597. Scholar
  12. 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. Scholar
  13. 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. Scholar
  14. 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. Scholar
  15. 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. Scholar
  16. 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. Scholar
  17. Fountain, C., Winter, A. S., & Bearman, P. S. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129, e1112–e1120. Scholar
  18. 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. Scholar
  19. 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.
  20. 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.Google Scholar
  21. Gray, D. E. (2006). Coping over time: the parents of children with autism. Journal of Intellectual Disability Research, 50, 970–976. Scholar
  22. Hammond, S. A. (2013). The thin book of appreciative inquiry. Bend: Thin Book Publishing Co..Google Scholar
  23. Health Resources and Services Administration. (2016). 2016 Wyoming health center data. Retrieved from: Scholar
  24. 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:
  25. 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.
  26. 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. Scholar
  27. 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. Scholar
  28. 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. Scholar
  29. 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. Scholar
  30. Lovaas, O. I., & Smith, T. (2003). Early and intensive behavioral intervention for autism. Evidence-based Psychotherapies for Children and Adolescents, 325–340. doi:
  31. 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. Scholar
  32. 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. Scholar
  33. 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:
  34. 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. Accessed 10 March 2018.
  35. 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. CrossRefGoogle Scholar
  36. 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. Scholar
  37. 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. Scholar
  38. 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. Scholar
  39. Neff, K. D., & Faso, D. J. (2015). Self-compassion and well-being in parents of children with autism. Mindfulness, 6, 938–947. Scholar
  40. 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. Scholar
  41. 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.
  42. 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.
  43. Patton, M. Q. (2015). Qualitative research and evaluation methods: integrating theory and practice (Vol. 4). Thousand Oaks: Sage Publications Inc..Google Scholar
  44. 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!etd.send_file?accession=osu149250986729511&disposition=inlineGoogle Scholar
  45. 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. Scholar
  46. 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.
  47. Reed, J. (2006). Appreciative inquiry: research for change. Thousand Oaks: Sage Publications, Inc..Google Scholar
  48. 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.
  49. 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. Scholar
  50. 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. Scholar
  51. Rogers, S., & Dawson, G. (2010). Early start Denver model for young children with autism: promoting language, learning, and engagement. New York: The Guilford PressGoogle Scholar
  52. 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. Scholar
  53. 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. Scholar
  54. 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. Scholar
  55. 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. Scholar
  56. 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. Scholar

Copyright information

© Springer Nature Switzerland AG 2018

Authors and Affiliations

  1. 1.Wyoming Institute for Disabilities, College of Health Sciences School of PharmacyUniversity of WyomingLaramieUSA
  2. 2.Wyoming Institute for Disabilities (WIND), College of Health SciencesUniversity of WyomingLaramieUSA
  3. 3.University of Colorado BoulderBoulderUSA
  4. 4.School of Counseling, Leadership, Advocacy, and Design (CLAD), Counselor Education and SupervisionUniversity of WyomingLaramieUSA

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