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Articles

Pre-diagnostic and Diagnostic Stages of Autism Spectrum Disorder: A Parent Perspective

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  • Abbott M., Bernard. P., & Forge, J. (2012). Communicating a diagnosis of autism spectrum disorder—A qualitative study of parents’ experiences. Clinical Child Psychology and Psychiatry, 18(3). 370–382. doi:10.1177/1359104512455813
  • Andersen, B. L., & Cacioppo, J. (1995). Delay in seeking a cancer diagnosis: Delay stages and psychophysiological comparison processes. British Journal of Social Psychology, 34, 33–52. doi:10.1111/j.2044-8309.1995.tb01047.x
  • Baxter, C., Cummins, R. A., & Polak, S. (1995). A longitudinal study of parental stress and support: From diagnosis of disability to leaving school. International Journal of Disability, Development and Education, 42(2), 125–136. doi:10.1080/01609510903437383
  • Bazeley, P. (2003). Qualitative data analysis: Practical strategies. London: SAGE.
  • Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39(2), 350–362. doi:10.1007/s10803-008-0632-0
  • Benson, P., & Kersh, J. (2011). Marital quality and psychological adjustment among mothers of children with ASD: Cross-sectional and longitudinal relationships. Journal of Autism and Developmental Disorders, 41, 1675–1685. doi:10.1007/s10803-011-1198-9
  • Braiden, H. J., Bothwell, J., & Duffy, J. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care in Practice, 16(4), 377–389. doi:10.1080/13575279.2010.498415
  • Bristol, M. M. (1987). Mothers of children with autism and communication disorders: Successful adaptation and the double ABCX model. Journal of Autism & Developmental Disorders, 17, 469–486. doi:10.1177/1098300714532134
  • Brogan, C. A., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder determinants of satisfaction in a sample of scottish parents. Autism, 7(1), 31–46. doi:10.1177/1362361303007001004
  • Carter, I. (2009). Positive and negative experiences of parents involved in online self-help groups for autism. Journal on Developmental Disabilities, 15(1), 44–52. doi:10.1007/s10935-008-0134-z
  • Casey, L. B., Zanksas, S., Meindl, J. N., Parra, G. R., Cogdal, P., & Powell, K. (2012). Parental symptoms of posttraumatic stress following a child's diagnosis of autism spectrum disorder: A pilot study. Research in Autism Spectrum Disorders, 6(3), 1186–1193. doi: 10.1016/j.rasd.2012.03.008
  • Chawarska, K., Paul, R., Klin, A., Hannigen, S., Dichtel, L. E., & Volkmar, F. (2007). Parental recognition of developmental problems in toddlers with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37(1), 62–72. doi:10.1007/s10803-006-0330-8
  • Corbin, J. M., & Strauss, A. (1990). Grounded theory research: Procedures, canons, and evaluative criteria. Qualitative sociology, 13(1), 3–21. doi: 10.1007/BF00988593
  • Dabrowska, A. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280. doi:10.1111/j.1365-2788.2010.01258.x
  • De Giacomo, A., & Fombonne, E. (1998). Parental recognition of developmental abnormalities in autism. European Child & Adolescent Psychiatry, 7(3), 131–136. doi:10.1007/s10803-006-0330-8
  • Dillenburger, K., Jordan, J. A., McKerr, L., & Keenan, M. (2015). The Millennium child with autism: Early childhood trajectories for health, education and economic wellbeing. Developmental Neurorehabilitation, 18, 37–46. doi:10.3109/17518423.2014.964378
  • Doren, B., Gau, J. M., & Lindstrom, L. E. (2012). The relationship between parent expectations and postschool outcomes of adolescents with disabilities. Exceptional Children, 79(1), 7–23.
  • Dosreis, S, Weiner, C. L., Johnson, L., & Newschaffer, C. J. (2006). Autism spectrum disorder screening and management practices among general pediatric providers. Journal of Developmental & Behavioral Pediatrics, 27(2), S88–S94. doi:10.1097/00004703-200604002-00006
  • Evan, A. (2010). Parents’ responses to their child’s diagnosis of autism spectrum disorder (Doctoral dissertation). University of Southampton. Retrieved from http://eprints.soton.ac.uk/172757/1.hasCoversheetVersion/Thesis_-_Amber_Evans.pdf
  • Faul, F., Erdfelder, E., Lang, A.-G., & Buchner, A. (2007). G*Power 3: A flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behavior Research Methods, 39, 175–191 doi: 10.3758/BF03193146
  • Forlin, C., Sharma, U., & Loreman, T. (2007). An international comparison of pre-service teacher attitudes towards inclusive education. Disability Studies Quarterly, 27(4). Retrieved from http://dsq-sds.org/article/view/53/53 doi: 10.18061/dsq.v27i4.53
  • Gilliam, J. E. (2006). Gilliam Autism Rating Scale (2nd ed.). Austin, TX: Pro-ed.
  • Glense, C. (2016). Qualitative reserachers: An introduction (5th ed.). New York: Pearson Education.
  • Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451. doi:10.1177/1362361306066601
  • Goin-Kochel, R. P., & Myers, B. J. (2005). Parental report of early autistic symptoms: Differences in ages of detection and frequencies of characteristics among three autism-spectrum disorders. Journal on Developmental Disabilities, 11(2), 21–39. doi:10.1016/j.sbspro.2012.06.699
  • Golnik, A., Ireland, M., & Borowsky, I. W. (2009). Medical homes for children with autism: A physician survey. Pediatrics, 123(3), 966–971. doi:10.1542/peds.2008-1321
  • Gray, D. E. (2009). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215–222. doi: 10.1080/1366825021000008639
  • Gupta, A., & Singhal, N. (2005). Psychosocial support for families of children with autism. Asia Pacific Disability Rehabilitation Journal, 16(2), 62–83. doi:10.3109/01460862.2012.678263.
  • Guthrie, W., Swineford, L. B., Nottke, C., & Wetherby, A. M. (2013). Early diagnosis of autism spectrum disorder: Stability and change in clinical diagnosis and symptom presentation. Journal of Child Psychology and Psychiatry, 54(5), 582–590. doi:10.1111/jcpp.12008
  • Heidgerken, A. D., Geffken, G., Modi, A., & Frakey, L. (2005). A survey of autism knowledge in a health care setting. Journal of Autism and Developmental Disorders, 35(3), 323–330. doi:10.1007/s10803-012-1604-y
  • Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14(2), 159–171. doi:10.1023/A:1015219514621
  • Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125–137. doi:10.1177/1362361305051403
  • Howlin, P., & Moore, A. (1997). Diagnosis in autism a survey of over 1200 patients in the UK. Autism, 1(2), 135–162. doi:10.1177/1362361397012003
  • Huerta, M., & Lord, C. (2012). Diagnostic evaluation of autism spectrum disorders. Pediatric Clinics of North America, 59(1), 103–111. doi:10.1016/j.pcl.2011.10.018
  • Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20(3), –189. doi:10.1177/10883576050200030601
  • IBM Corp. (2013). IBM SPSS Statistics for Windows (version 22.0) [software]. Armonk, NY: IBM Corp.
  • Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215. doi:10.1016/j.pcl.2011.10.018
  • Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390–397. doi: 10.1111/j.1468-3148.2010.00555.x
  • Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214–227. doi:10.1007/s10803-010-1140-6
  • Koegel, R. L., Schreibman, L., Loos, L. M., Dirlich-Wilhelm, H., Dunlap, G., Robbins, F. R., & Plienis, A. J. (1992). Consistent stress profiles in mothers of children with autism. Journal of Autism and Developmental Disorders, 22(2), 205–216. doi: 10.1007/BF01058151
  • Kozlowski, A. M., Matson, J. L., Horovitz, M., Worley, J. A., & Neal, D. (2011). Parents’ first concerns of their child's development in toddlers with autism spectrum disorders. Developmental Neurorehabilitation, 14(2), 72–78. doi:10.2466/PR0.71.8.1272-1274
  • Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329–339. doi:10.1542/peds.2008-1321
  • Lickenbrock, D. M., Ekas, N. V., & Whitman, T. L. (2011). Feeling good, feeling bad: Influences of maternal perceptions of the child and marital adjustment on well-being in mothers of children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 41(7), 848–858. doi:10.1007/s10803-010-1105-9
  • Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480–1486. doi:10.1155/2011/874619
  • Mansell, W., & Morris, K. (2004). A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service: Access to information and use of services. Autism, 8(4), 387–407. doi:10.1177/1362361399003003005
  • May Institute. ( n.d.). How is ASD diagnosed?. Retrieved from http://may.convio.net/site/R?i=W0Iw0-GLHunvqjnsOTAMPg
  • McGrew, J. H., & Keyes, M. L. (2014). Caregiver stress during the first year after diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 8(10), 1373–1385. doi:10.1016/j.rasd.2014.07.011
  • McMorries, C. A., Cox, E., Hudson, M., Liu, X., & Bebko, J. M. (2013). The diagnostic process of children with autism spectrum disorder: Implications for early identification and intervention. Journal on Developmental Disability, 19(2), 42–49. doi:10.3109/17549507.2013.858773
  • Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional Children, 77(1), 7–36. doi:10.1177/001440291007700101
  • Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273–285. doi:10.1177/1362361399003003005
  • Moore, K., McConkey, R., Sines, D., & Cassidy, A. (1999). Improving diagnostic and assessment services for children with autistic spectrum disorders. Early Child Development and Care, 154(1), 1–11. doi:10.1080/0030443991540101
  • Murphy, M. A., & Ruble, L. A. (2012). A comparative study of rurality and urbanicity on access to and satisfaction with services for children with autism spectrum disorders. Rural Special Education Quarterly, 31(3), 3–11. doi:10.1177/1053815110362690
  • Ng, C. H. (1997). The stigma of mental illness in Asian cultures. Australian and New Zealand Journal of Psychiatry, 31(3), 382–390. doi:10.3109/00048679709073848
  • Noland, R. M., & Gabriels, R. L. (2004). Screening and identifying children with autism spectrum disorders in the public school system: The development of a model process. Journal of Autism and Developmental Disorders, 34(3), 265–277. doi:10.1023/B:JADD.0000029549.84385.44
  • Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092–1103. doi:10.1007/s10803-007-0497-7
  • Palmer, R. F., Blanchard, S., Jean, C. R., & Mandell, D. S. (2005). School district resources and identification of children with autistic disorder. American Journal of Public Health, 95(1), 125–130. doi:10.2105/AJPH.2003.023077
  • Rosenberg, R. E., Landa, R., Law, J. K., Stuart, E. A., & Law, P. A. (2011). Factors affecting age at initial autism spectrum disorder diagnosis in a national survey. Autism Research and Treatment, 2011, 1–11. doi:10.1155/2011/874619
  • Regional Autistic Spectrum Disorder Network for Northern Ireland (RASDN). (2011). Six steps to autism care. Retrieved from http://www.belfasttrust.hscni.net/pdf/Six_Steps_of_Autism_Care_Pathway_Report.pdf
  • Russell, F. (2003). The expectations of parents of disabled children. British Journal of Special Education, 30(3), 144–149. doi:10.1111/1467-8527.00300
  • Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child & Family Behavior Therapy, 19(4), 15–32. doi:10.3104/reviews/2079
  • Schwartz, H., & Drager, K. D. (2008). Training and knowledge in autism among speech-language pathologists: A survey. Language, Speech, and Hearing Services in Schools, 39(1), 66–77. doi:10.1007/s00455-008-9151-6
  • Selimoglu, O., Ozdemir, S., Toret, G., & Ozkubat, U. (2013). An examination of the views of parents of children with autism about their experiences at the post-diagnosis period of autism. International Journal of Early Childhood Special Education, 5(2), 162–167. doi:10.1177/0271121410377510
  • Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28(1), 9–22. doi: 10.1016/j.ridd.2005.09.003
  • Singh, J. S. (2016). Parenting work and autism trajectories of care. Sociology of Health & Illness. doi:10.1111/1467-9566.12437
  • Starfield, B., & Shi, L. (2004). The medical home, access to care, and insurance: A review of evidence. Pediatrics, 113(4), 1493–1498. doi:10.1089/tmj.2010.0089
  • Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 3(1), 86–97. doi: 10.1016/j.rasd.2008.04.006
  • Thomas, C. R., & Holzer, C. E. (2006). The continuing shortage of child and adolescent psychiatrists. Journal of the American Academy of Child & Adolescent Psychiatry, 45(9), 1023–1031. doi: 10.1097/01.chi.0000225353.16831.5d
  • VanVoorhis, C. R. W., & Morgan, B. L. (2007). Understanding power and rules of thumb for determining sample sizes. Tutorials in Quantitative Methods for Psychology, 3(2), 43–50. doi: 10.20982/tqmp.03.2.p043
  • Volkmar, F. R., Paul, R., Klin, A., & Cohen, D. J. (Eds.). (2005). Handbook of autism and pervasive developmental disorders, diagnosis, development, neurobiology, and behavior (Vol. 1). Hoboken, NJ: John Wiley & Sons.
  • Ware, J. E., Kosinski, M., & Keller, S. D. (1996). A 12-item Short-Form health survey: construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233. doi: 10.1097/00005650-199603000-00003
  • Westbrook, M. T., Legge, V., & Pennay, M. (1993). Attitudes towards disabilities in a multicultural society. Social Science & Medicine, 36(5), 615–623. doi:10.1016/0277-9536(93)90058-C
  • Yirmiya, N., & Charman, T. (2010). The prodrome of autism: early behavioral and biological signs, regression, peri- and post-natal development and genetics. Journal of Child Psychology and Psychiatry, 51(4), 432–458. doi:10.1177/1362361308097116
  • Young, R. L., Brewer, N., & Pattison, C. (2003). Parental identification of early behavioral abnormalities in children with autistic disorder. Autism, 7(2), 125–143. doi:10.1177/1362361303007002002
  • Zimet, G. D., Powell, S. S., Farley, G. K., Werkman, S., & Berkoff, K. A. (1990). Psychometric characteristics of the Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment, 55(3–4), 610–617. doi:10.1177/0004865815585389

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