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Stress and Satisfaction in the Diagnostic Process

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Handbook of Assessment and Diagnosis of Autism Spectrum Disorder

Part of the book series: Autism and Child Psychopathology Series ((ACPS))

Abstract

Diagnosis can be a complex, time-consuming, and stressful process. Parents and individuals with autism spectrum disorder are consumers, and their reaction is critical. This chapter discusses the research on these topics, factors to consider when providing a diagnosis, and issues requiring further study.

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References

  • Abbott, M., Bernard, P., & Forge, J. (2013). 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.

    Article  PubMed  Google Scholar 

  • Abrams, E. Z., & Goodman, J. F. (1998). Diagnosing developmental problems in children: Parents and professionals negotiate bad news. Journal of Pediatric Psychology, 23(2), 87–98.

    PubMed  Google Scholar 

  • American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author.

    Google Scholar 

  • Avdi, E., Griffin, C., & Brough, S. (2000). Parents’ constructions of professional knowledge, expertise and authority during assessment and diagnosis of their child for an autistic spectrum disorder. British Journal of Medical Psychology, 73(3), 327–338.

    PubMed  Google Scholar 

  • Baile, W. F., & Costantini, A. (2013). Communicating with cancer patients and their families. In T. N. Wise, M. Biondi, & A. Costantini (Eds.), Psycho-oncology (pp. 57–90). Arlington, VA: American Psychiatric Publishing.

    Google Scholar 

  • Bailey, K. (2008). Supporting families. In K. Chawarska, A. Klin, & F. R. Volkmar (Eds.), Autism spectrum disorders in infants and toddlers: Diagnosis, assessment, and treatment (pp. 300–326). New York, NY: Guilford Press.

    Google Scholar 

  • Baird, G., McConachie, H., & Scrutton, D. (2000). Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Archives of Disease in Childhood, 83(6), 475–480.

    PubMed  PubMed Central  Google Scholar 

  • Baker-Ericzén, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30(4), 194–204.

    Google Scholar 

  • Boyd, B. A., Odom, S. L., Humphreys, B. P., & Sam, A. M. (2010). Infants and toddlers with autism spectrum disorder: Early identification and early intervention. Journal of Early Intervention, 32(2), 75–98.

    Google Scholar 

  • 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.

    Google Scholar 

  • Brian, J., Bryson, S. E., Garon, N., Roberts, W., Smith, I. M., Szatmari, P., et al. (2008). Clinical assessment of autism in high-risk 18-month-olds. Autism, 12(5), 433–456.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8(4), 409–423.

    PubMed  Google Scholar 

  • Cameron, S. J., Snowdon, A., & Orr, R. R. (1992). Emotions experienced by mothers of children with developmental disabilities. Children's Health Care, 21(2), 96–102.

    Google Scholar 

  • Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40(3), 317–324.

    PubMed  Google Scholar 

  • Carbone, P. S., Murphy, N. A., Norlin, C., Azor, V., Sheng, X., & Young, P. C. (2013). Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(4), 964–972.

    PubMed  Google Scholar 

  • CDC. (2014). Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report, 63(2), 1–21.

    Google Scholar 

  • Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97.

    PubMed  Google Scholar 

  • Connolly, M., & Gersch, I. (2013). A support group for parents of children on a waiting list for an assessment for autism spectrum disorder. Educational Psychology in Practice, 29(3), 293–308.

    Google Scholar 

  • Cottrell, D. J., & Summers, K. (1990). Communicating an evolutionary diagnosis of disability to parents. Child: Care, Health and Development, 16(4), 211–218.

    PubMed  Google Scholar 

  • Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine, 58(7), 1323–1335.

    Google Scholar 

  • Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18(5), 583–597.

    PubMed  Google Scholar 

  • De Alba, M. J. G., & Bodfish, J. W. (2011). Addressing parental concerns at the initial diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 5(1), 633–639.

    Google Scholar 

  • Dillenburger, K., Keenan, M., Doherty, A., Byrne, T., & Gallagher, S. (2010). Living with children diagnosed with autistic spectrum disorder: Parental and professional views. British Journal of Special Education, 37(1), 1–11.

    Google Scholar 

  • Dingfelder, H. E., & Mandell, D. S. (2011). Bridging the research-to-practice gap in autism intervention: An application of diffusion of innovation theory. Journal of Autism and Developmental Disorders, 41(5), 597–609.

    PubMed  PubMed Central  Google Scholar 

  • Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C., … Fombonne, E. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160–179.

    Google Scholar 

  • Goff, B. S. N., Springer, N., Foote, L. C., Frantz, C., Peak, M., Tracy, C., … Cross, K. A. (2013). Receiving the initial Down syndrome diagnosis: A comparison of prenatal and postnatal parent group experiences. Intellectual and Developmental Disabilities, 51(6), 446–457.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Gonzalez, N., Quintanta, J. M., Biblao, A., Escobar, A., Aizpuru, F., Thompson, A., … (2005). Development and validation of an in-patient satisfaction questionnaire. International Journal for Quality in Health Care, 17(6), 465–472.

    Google Scholar 

  • Graungaard, A. H., & Skov, L. (2007). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health and Development, 33(3), 296–307.

    PubMed  Google Scholar 

  • Groth-Marnat, G. (2003). Handbook of psychological assessment (4th ed.). Hoboken, NJ: John Wiley & Sons.

    Google Scholar 

  • Hackett, L., Shaikh, S., & Theodosiou, L. (2009). Parental perceptions of the assessment of autistic spectrum disorders in a tier three service. Child and Adolescent Mental Health, 14(3), 127–132.

    Google Scholar 

  • Hall, H. R., & Graff, J. C. (2010). Parenting challenges in families of children with autism: A pilot study. Issues in Comprehensive Pediatric Nursing, 33(4), 187–204.

    PubMed  Google Scholar 

  • Harper, A., Dyches, T. T., Harper, J., Roper, S. O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(11), 2604–2616.

    PubMed  Google Scholar 

  • Harrington, J. W., Patrick, P. A., Edwards, K. S., & Brand, D. A. (2006). Parental beliefs about autism: Implications for the treating physician. Autism, 10(5), 452–462.

    PubMed  Google Scholar 

  • Hasnat, M. J., & Graves, P. (2000). Disclosure of developmental disability: A study of paediatricians’ practices. Journal of Paediatrics and Child Health, 36(1), 27–31.

    PubMed  Google Scholar 

  • Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642.

    PubMed  Google Scholar 

  • Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41(12), 834–839.

    PubMed  Google Scholar 

  • Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism, 1(2), 135–162.

    Google Scholar 

  • Jensen, P. S., & Foster, M. (2010). Closing the research to practice gap in children’s mental health: Structures, solutions, and strategies. Administration and Policy in Mental Health and Mental Health Services Research, 37(1–2), 111–119.

    PubMed  Google Scholar 

  • Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.

    PubMed  Google Scholar 

  • Jones, L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2014). Experiences of receiving a diagnosis of autism spectrum disorder: A survey of adults in the United Kingdom. Journal of Autism and Developmental Disorders, 44(12), 3033–3044.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • Klintwall, L., Eldevik, S., & Eikeseth, S. (2015). Narrowing the gap: Effects of intervention on developmental trajectories in autism. Autism, 19(1), 53–63.

    PubMed  Google Scholar 

  • Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., … Fryer, G. E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children's Health. Journal of Developmental and Behavioral Pediatrics, 29(3), 152–160.

    Google Scholar 

  • Lord, C., & Richler, J. (2006). Early diagnosis of children with autism spectrum disorders. In T. Charman & W. Stone (Eds.), Social & communication development in autism spectrum disorders: Early identification, diagnosis, & intervention (pp. 35–59). New York, NY: Guilford Press.

    Google Scholar 

  • Lyons, A. M., Leon, S. C., Phelps, C. E. R., & Dunleavy, A. M. (2010). The impact of child symptom severity on stress among parents of children with ASD: The moderating role of coping styles. Journal of Child and Family Studies, 19(4), 516–524.

    Google Scholar 

  • Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802. doi:10.1007/s10803-006-0314-8.

    Article  PubMed  Google Scholar 

  • Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., … Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3):493–498.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • McConkey, R., Truesdale-Kennedy, M., & Cassidy, A. (2009). Mothers’ recollections of early features of autism spectrum disorders. Child and Adolescent Mental Health, 14(1), 31–36.

    Google Scholar 

  • McMorris, 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 Disabilities, 19(2), 42–49.

    Google Scholar 

  • Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273–285.

    Google Scholar 

  • Minnes, P., Perry, A., & Weiss, J. A. (2015). Predictors of distress and well‐being in parents of young children with developmental delays and disabilities: The importance of parent perceptions. Journal of Intellectual Disability Research, 59(6), 551–560.

    PubMed  Google Scholar 

  • Mitchell, C., & Holdt, N. (2014). The search for a timely diagnosis: Parents’ experiences of their child being diagnosed with an Autistic Spectrum Disorder. Journal of Child and Adolescent Mental Health, 26(1), 49–62.

    PubMed  Google Scholar 

  • Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 6(1), 293–303.

    Google Scholar 

  • Molteni, P., & Maggiolini, S. (2014). Parents’ perspectives towards the diagnosis of autism: An italian case study research. Journal of Child and Family Studies, 24, 1088–1096.

    Google Scholar 

  • Mulligan, J., MacCulloch, R., Good, B., & Nicholas, D. B. (2012). Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. Social Work in Mental Health, 10(4), 311–330.

    Google Scholar 

  • Nadel, S., & Poss, J. E. (2007). Early detection of autism spectrum disorders: Screening between 12 and 24 months of age. Journal of the American Academy of Nurse Practitioners, 19(8), 408–417.

    PubMed  Google Scholar 

  • Nissenbaum, M. S., Tollefson, N., & Reese, R. M. (2002). The interpretive conference: Sharing a diagnosis of autism with families. Focus on Autism and Other Developmental Disabilities, 17(1), 30–43.

    Google Scholar 

  • Oosterling, I. J., Wensing, M., Swinkels, S. H., van der Gaag, R. J., Visser, J. C., Woudenberg, T., … Buitelaar, J. K. (2010). Advancing early detection of autism spectrum disorder by applying an integrated two-stage screening approach. Journal of Child Psychology and Psychiatry, 51(3):250–258.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12(3), 309–324.

    PubMed  Google Scholar 

  • Palmer, R. F., Walker, T., Mandell, D., Bayles, B., & Miller, C. S. (2010). Explaining low rates of autism among Hispanic schoolchildren in Texas. American Journal of Public Health, 100(2), 270–272.

    PubMed  PubMed Central  Google Scholar 

  • Poehlmann, J., Clements, M., Abbeduto, L., & Farsad, V. (2005). Family experiences associated with a child’s diagnosis of fragile X or Down syndrome: Evidence for disruption and resilience. Mental Retardation, 43(4), 255–267.

    PubMed  Google Scholar 

  • Poslawsky, I. E., Naber, F. B. A., Van Daalen, E., & Van Engeland, H. (2014). Parental reaction to early diagnosis of their children’s autism spectrum disorder: An exploratory study. Child Psychiatry and Human Development, 45(3), 294–305.

    PubMed  Google Scholar 

  • Pruett, K. D. (2013). Feedback which leads forward: Where intervention begins. Journal of the American Academy of Child and Adolescent Psychiatry, 52(8), 769–771.

    PubMed  Google Scholar 

  • Punshon, C., Skirrow, P., & Murphy, G. (2009). The ‘not guilty verdict’: Psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism, 13(3), 265–283.

    PubMed  Google Scholar 

  • Renty, J., & Roeyers, H. (2006). Satisfaction with formal support and education for children with autism spectrum disorder: The voices of the parents. Child: Care, Health and Development, 32(3), 371–385.

    PubMed  Google Scholar 

  • Ritzema, A. M., & Sladeczek, I. E. (2011). Stress in parents of children with developmental disabilities over time. Journal on Developmental Disabilities, 17(2), 22–34.

    Google Scholar 

  • Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609–1620.

    PubMed  Google Scholar 

  • Shea, V. (1993). Interpreting results to parents of preschool children. In E. Schopler, M. E. Van Bourgondien, & M. M. Bristol (Eds.), Preschool issues in autism (pp. 185–198). New York, NY: Plenum Press.

    Google Scholar 

  • Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921–923.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Sloper, P., & Turner, S. (1993). Determinants of parental satisfaction with disclosure of disability. Developmental Medicine and Child Neurology, 35(9), 816–825.

    PubMed  Google Scholar 

  • Smith, B., Chung, M. C., & Vostanis, P. (1994). The path to care in autism: Is it better now? Journal of Autism and Developmental Disorders, 24(5), 551–563.

    PubMed  Google Scholar 

  • Stahmer, A. C. (2007). The basic structure of community early intervention programs for children with autism: Provider descriptions. Journal of Autism and Developmental Disorders, 37(7), 1344–1354.

    PubMed  Google Scholar 

  • Stahmer, A. C., & Aarons, G. A. (2009). Attitudes toward adoption of evidence-based practices: A comparison of autism early intervention providers and children’s mental health providers. Psychological Services, 6(3), 223–234.

    PubMed  PubMed Central  Google Scholar 

  • Tharinger, D. J., Finn, S. E., Hersh, B., Wilkinson, A., Christopher, G. B., & Tran, A. (2008). Assessment feedback with parents and preadolescent children: A collaborative approach. Professional Psychology: Research and Practice, 39(6), 600–609.

    Google Scholar 

  • Thomson, S., Osborn, R., Squires, D., & Jun, M. (2013). International Profiles of Health Care Systems, 2013: Australia, Canada, Denmark, England, France, Germany, Italy, Japan, the Netherlands, New Zealand, Norway, Sweden, Switzerland, and the United States. Washington, D.C: The Commonwealth Fund.

    Google Scholar 

  • Turris, S. A. (2005). Unpacking the concept of patient satisfaction: A feminist analysis. Journal of Advanced Nursing, 50(3), 293–298.

    PubMed  Google Scholar 

  • Watermeyer, J., Kanji, A., & Cohen, A. (2012). Caregiver recall and understanding of paediatric diagnostic information and assessment feedback. International Journal of Audiology, 51(12), 864–869.

    PubMed  Google Scholar 

  • Watson, S. L. (2008). ‘Something you have to do’—Why do parents of children with developmental disabilities seek a differential diagnosis? Developmental Disabilities Bulletin, 36(1–2), 168–198.

    Google Scholar 

  • Wiggins, L. D., Baio, J., & Rice, C. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. Journal of Developmental and Behavioral Pediatrics, 27(Suppl2), S79–S87.

    PubMed  Google Scholar 

  • Williams, D. (2010). Theory of own mind in autism: Evidence of a specific deficit in self-awareness? Autism, 14(5), 474–494. doi:10.1177/1362361310366314.

    Article  PubMed  Google Scholar 

  • Wong, V. C. N., & Kwan, Q. K. (2010). Randomized controlled trial for early intervention for autism: A pilot study of the Autism 1-2-3 project. Journal of Autism and Developmental Disorders, 40(6), 677–688.

    PubMed  Google Scholar 

  • Zuckerman, K. E., Mattox, K. E., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132(3), 445–453.

    PubMed  PubMed Central  Google Scholar 

  • Zwaigenbaum, L., & Stone, W. (2006). Early screening for autism spectrum disorders in clinical practice settings. In T. Charman & W. Stone (Eds.), Social & communication development in autism spectrum disorders: Early identification, diagnosis, & intervention (pp. 88–113). New York, NY: Guilford Press.

    Google Scholar 

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Authors and Affiliations

  1. Department of Psychiatry, Christian Sarkine Autism Treatment Center, James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, IN, USA

    Ebony L. Holliday, Hillary C. Stanley, Jill C. Fodstad & Noha F. Minshawi

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  1. Ebony L. Holliday
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  2. Hillary C. Stanley
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  3. Jill C. Fodstad
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  4. Noha F. Minshawi
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Correspondence to Noha F. Minshawi .

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  1. Department of Psychology, Louisiana State University, Baton Rouge, LA, USA

    Johnny L. Matson

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Holliday, E.L., Stanley, H.C., Fodstad, J.C., Minshawi, N.F. (2016). Stress and Satisfaction in the Diagnostic Process. In: Matson, J.L. (eds) Handbook of Assessment and Diagnosis of Autism Spectrum Disorder. Autism and Child Psychopathology Series. Springer, Cham. https://doi.org/10.1007/978-3-319-27171-2_8

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