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.
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.
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.
American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97.
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.
Cottrell, D. J., & Summers, K. (1990). Communicating an evolutionary diagnosis of disability to parents. Child: Care, Health and Development, 16(4), 211–218.
Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine, 58(7), 1323–1335.
Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18(5), 583–597.
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.
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.
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.
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.
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.
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.
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.
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.
Groth-Marnat, G. (2003). Handbook of psychological assessment (4th ed.). Hoboken, NJ: John Wiley & Sons.
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.
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.
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.
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.
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.
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.
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.
Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism, 1(2), 135–162.
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.
Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.
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.
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.
Klintwall, L., Eldevik, S., & Eikeseth, S. (2015). Narrowing the gap: Effects of intervention on developmental trajectories in autism. Autism, 19(1), 53–63.
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.
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.
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.
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.
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.
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.
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.
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.
Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273–285.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12(3), 309–324.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Sloper, P., & Turner, S. (1993). Determinants of parental satisfaction with disclosure of disability. Developmental Medicine and Child Neurology, 35(9), 816–825.
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.
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.
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.
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.
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.
Turris, S. A. (2005). Unpacking the concept of patient satisfaction: A feminist analysis. Journal of Advanced Nursing, 50(3), 293–298.
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.
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.
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.
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.
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.
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.
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.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2016 Springer International Publishing Switzerland
About this chapter
Cite this chapter
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
Download citation
DOI: https://doi.org/10.1007/978-3-319-27171-2_8
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-319-27169-9
Online ISBN: 978-3-319-27171-2
eBook Packages: Behavioral Science and PsychologyBehavioral Science and Psychology (R0)