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When Are We Sure? Predictors of Clinician Certainty in the Diagnosis of Autism Spectrum Disorder

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Abstract

Differential diagnosis of autism spectrum disorder (ASD) is challenging, and uncertainty regarding a child’s diagnosis may result in under-identification or prolonged diagnostic pathways. The current study examined diagnostic certainty, or how sure clinicians were that their diagnosis was accurate, among 478 toddler and preschool-aged children referred for possible ASD to academic medical specialty clinics. Overall, 60 percent of diagnoses were made with complete certainty. Clinicians were more certain when positively identifying ASD than ruling it out. Children presenting with a moderate (vs high or low) level of observable ASD symptoms were less likely to have a certain diagnosis. Further, clinicians rated less diagnostic certainty for older children, those with public insurance, and those with higher IQ and adaptive behavior abilities.

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Notes

  1. We also examined whether ADOS calibrated severity (comparison) scores related to diagnostic certainty. Severity scores were computed for social affect and restricted, repetitive behaviors using the child’s age, module, and algorithm used (Hus et al. 2014; Esler et al. 2015). The social affect (r = 0.308, p < 0.001) and restricted, repetitive behavior (r = 0.315, p < 0.001) scores both correlated positively with diagnostic certainty. Both comparison scores were also significant predictors of diagnostic certainty when entered in place of the ADOS-2 classifications (autism, spectrum, non-spectrum) in the full logistic regression model. The overall results of the logistic regression model were unchanged regardless of whether we used the ADOS-2 classifications or the comparison scores. Therefore, substantive results are presented using the ADOS-2 classifications to be consistent with the level of analysis at which clinicians would use the ADOS-2.

References

  • Achenbach, T. M., & Rescorla, L. (2000). Child behavior checklist. Burlington.

  • Akshoomoff, N., Corsello, C., & Schmidt, H. (2006). The role of the autism diagnostic observation schedule in the assessment of autism spectrum disorders in school and community settings. The California School Psychologist, 11(1), 7–19.

    Article  PubMed  Google Scholar 

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

    Book  Google Scholar 

  • Bradshaw, J., Steiner, A. M., Gengoux, G., & Koegel, L. K. (2015). Feasibility and effectiveness of very early intervention for infants at-risk for autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 45(3), 778–794.

    Article  PubMed  Google Scholar 

  • Brett, D., Warnell, F., McConachie, H., & Parr, J. R. (2016). Factors affecting age at ASD diagnosis in UK: No evidence that diagnosis age has decreased between 2004 and 2014. Journal of Autism and Developmental Disorders, 46(6), 1974–1984.

    Article  PubMed  PubMed Central  Google Scholar 

  • Brewer, N. (2006). Uses and abuses of eyewitness confidence. Legal and Criminological Psychology, 11, 3–23.

    Article  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.

    Article  PubMed  Google Scholar 

  • Charman, T., & Baird, G. (2002). Practitioner review: Diagnosis of autism spectrum disorder in 2-and 3-year-old children. Journal of Child Psychology and Psychiatry, 43(3), 289–305.

    Article  PubMed  Google Scholar 

  • Constantino, J. N., & Gruber, C. P. (2012). Social responsiveness scale, Second Edition (SRS-2). Torrance: Western Psychological Services.

    Google Scholar 

  • Corsello, C. M., Akshoomoff, N., & Stahmer, A. C. (2013). Diagnosis of autism spectrum disorders in 2-year-olds: A study of community practice. Journal of Child Psychology and Psychiatry, 54(2), 178–185.

    Article  PubMed  Google Scholar 

  • Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162.

    Article  PubMed  Google Scholar 

  • de Marchena, A., & Miller, J. (2017). “Frank” presentations as a novel research construct and element of diagnostic decision-making in autism spectrum disorder. Autism Research, 10(4), 653–662.

    Article  PubMed  Google Scholar 

  • Eaves, L. C., & Ho, H. H. (2004). The very early identification of autism: Outcome to age 41/2–5. Journal of Autism and Developmental Disorders, 34(4), 367–378.

    Article  PubMed  Google Scholar 

  • Elliot, C. (2007). Differential abilities scale – 2nd edition (DAS-II) manual. San Antonio: Harcourt Assessment, Inc.

    Google Scholar 

  • Esler, A. N., Bal, V. H., Guthrie, W., Wetherby, A., Weismer, S. E., & Lord, C. (2015). The autism diagnostic observation schedule, toddler module: Standardized severity scores. Journal of Autism and Developmental Disorders, 45(9), 2704–2720.

    Article  PubMed  PubMed Central  Google Scholar 

  • Estes, A., Zwaigenbaum, L., Gu, H., John, T. S., Paterson, S., Elison, J. T., Kostopoulos, P. (2015). Behavioral, cognitive, and adaptive development in infants with autism spectrum disorder in the first 2 years of life. Journal of Neurodevelopmental Disorders, 7(1), 24.

    Article  PubMed  PubMed Central  Google Scholar 

  • Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology & Community Health, 65(6), 503–510.

    Article  Google Scholar 

  • Fountain, C., Winter, A. S., & Bearman, P. S. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129(5), e1112–e1120.

    Article  PubMed  PubMed Central  Google Scholar 

  • Garb, H. N. (2005). Clinical judgment and decision making. Annual Review of Clinical Psychology 2005, 1, 67–89.

    Article  Google Scholar 

  • Gebauer, L., Foster, N. E., Vuust, P., & Hyde, K. L. (2015). Is there a bit of autism in all of us? Autism spectrum traits are related to cortical thickness differences in both autism and typical development. Research in Autism Spectrum Disorders, 13, 8–14.

    Article  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.

    Article  PubMed  Google Scholar 

  • Granpeesheh, D., Dixon, D. R., Tarbox, J., Kaplan, A. M., & Wilke, A. E. (2009). The effects of age and treatment intensity on behavioral intervention outcomes for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3(4), 1014–1022.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Halladay, A. K., Bishop, S., Constantino, J. N., Daniels, A. M., Koenig, K., Palmer, K., Taylor, J. L. (2015). Sex and gender differences in autism spectrum disorder: Summarizing evidence gaps and identifying emerging areas of priority. Molecular Autism, 6(1), 36.

    Article  PubMed  PubMed Central  Google Scholar 

  • Happé, F. G., Mansour, H., Barrett, P., Brown, T., Abbott, P., & Charlton, R. A. (2016). Demographic and cognitive profile of individuals seeking a diagnosis of autism spectrum disorder in adulthood. Journal of Autism and Developmental Disorders, 46(11), 3469–3480.

    Article  PubMed  Google Scholar 

  • Hedley, D., Brewer, N., Nevill, R., Uljarević, M., Butter, E., & Mulick, J. A. (2016). The relationship between clinicians’ certainty and accuracy, and the influence of child characteristics, in the screening of autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(7), 2340–2348.

    Article  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.

    Article  Google Scholar 

  • Hus, V., Gotham, K., & Lord, C. (2014). Standardizing ADOS domain scores: Separating severity of social affect and restricted and repetitive behaviors. Journal of Autism and Developmental Disorders, 44(10), 2400–2412.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kaboski, J., McDonnell, C. G., & Valentino, K. (2017). Resilience and Autism Spectrum Disorder: Applying Developmental Psychopathology to Optimal Outcome. Review Journal of Autism and Developmental Disorders, 4(3), 175–189.

    Article  Google Scholar 

  • Kanne, S. M., Carpenter, L. A., & Warren, Z. (2018). Screening in toddlers and preschoolers at risk for autism spectrum disorder: Evaluating a novel mobile-health screening tool. Autism Research;, 11(7), 1038–1049.

    Article  PubMed  Google Scholar 

  • Kim, S. H., & Lord, C. (2012). Combining information from multiple sources for the diagnosis of autism spectrum disorders for toddlers and young preschoolers from 12 to 47 months of age. Journal of Child Psychology and Psychiatry, 53(2), 143–151.

    Article  PubMed  Google Scholar 

  • Kotov, R., Krueger, R. F., Watson, D., Achenbach, T. M., Althoff, R. R., Bagby, R. M., … Eaton, N. R. (2017). The Hierarchical Taxonomy of Psychopathology (HiTOP): A dimensional alternative to traditional nosologies. Journal of Abnormal Psychology, 126(4), 454.

    Article  PubMed  Google Scholar 

  • Lai, M. C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child & Adolescent Psychiatry, 54(1), 11–24.

    Article  Google Scholar 

  • Lai, M. C., Lombardo, M. V., Ruigrok, A. N., Chakrabarti, B., Auyeung, B., & Szatmari, P., MRC AIMS Consortium. (2017). Quantifying and exploring camouflaging in men and women with autism. Autism, 21(6), 690–702.

    Article  PubMed  Google Scholar 

  • Lenhard, W., Breitenbach, E., Ebert, H., Schindelhauer-Deutscher, H. J., & Henn, W. (2005). Psychological benefit of diagnostic certainty for mothers of children with disabilities: Lessons from down syndrome. American Journal of Medical Genetics Part A, 133(2), 170–175.

    Article  Google Scholar 

  • Lord, C., & Jones, R. M. (2012). Annual research review: Re-thinking the classification of autism spectrum disorders. Journal of Child Psychology and Psychiatry, 53(5), 490–509.

    Article  PubMed  Google Scholar 

  • Lord, C., Luyster, R., Gotham, K., & Guthrie, W. J. (2012a). Autism diagnostic observation schedule, second edition (ADOS-2) Manual (Part II): –Toddler Module. Los Angeles: Western Psychological Services.

    Google Scholar 

  • Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. L. (2012b). Autism diagnostic observation schedule, second edition (ADOS-2) Manual (Part 1); Modules 1–4. Torrance: Western Psychological Services.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

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

    Article  PubMed  PubMed Central  Google Scholar 

  • Matson, J. L., Beighley, J., & Turygin, N. (2012). Autism diagnosis and screening: Factors to consider in differential diagnosis. Research in Autism Spectrum Disorders, 6(1), 19–24.

    Article  Google Scholar 

  • Matson, J. L., Nebel-Schwalm, M., & Matson, M. L. (2007). A review of methodological issues in the differential diagnosis of autism spectrum disorders in children. Research in Autism Spectrum Disorders, 1(1), 38–54.

    Article  Google Scholar 

  • Matson, J. L., Wilkins, J., & Gonzalez, M. (2008). Early identification and diagnosis in autism spectrum disorders in young children and infants: How early is too early? Research in Autism Spectrum Disorders, 2(1), 75–84.

    Article  Google Scholar 

  • Miller, D. J., Spengler, E. S., & Spengler, P. M. (2015). A meta-analysis of certainty and judgment accuracy in clinical decision making. Journal of Counseling Psychology, 62(4), 553.

    Article  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.

    Article  Google Scholar 

  • Mullen, E. M. (1995). Mullen scales of early learning (AGS ed.). Circle Pines: American Guidance Service, Inc.

    Google Scholar 

  • Osterling, J., & Dawson, G. (1994). Early recognition of children with autism: A study of first birthday home videotapes. Journal of Autism and Developmental Disorders, 24(3), 247–257.

    Article  PubMed  Google Scholar 

  • Ozonoff, S., Young, G. S., Steinfeld, M. B., Hill, M. M., Cook, I., Hutman, T., … Sigman, M. (2009). How early do parent concerns predict later autism diagnosis? Journal of Developmental and Behavioral Pediatrics, 30(5), 367.

    Article  PubMed  PubMed Central  Google Scholar 

  • Penner, M., King, G. A., Hartman, L., Anagnostou, E., Shouldice, M., & Hepburn, C. M. (2017). Community general pediatricians’ perspectives on providing autism diagnoses in Ontario, Canada: a qualitative study. Journal of Developmental and Behavioral Pediatrics, 38(8), 593.

    Article  PubMed  PubMed Central  Google Scholar 

  • Regier, D. A., Narrow, W. E., Clarke, D. E., Kraemer, H. C., Kuramoto, S. J., Kuhl, E. A., & Kupfer, D. J. (2013). DSM-5 field trials in the United States and Canada, Part II: Test-retest reliability of selected categorical diagnoses. American Journal of Psychiatry, 170(1), 59–70.

    Article  PubMed  Google Scholar 

  • Rescorla, L. A., Winder-Patel, B. M., Paterson, S. J., Pandey, J., Wolff, J. J., Schultz, R. T., & Piven, J. (2017). Autism spectrum disorder screening with the CBCL/1½–5: Findings for young children at high risk for autism spectrum disorder. Autism. https://doi.org/10.1177/1362361317718482.

    Article  PubMed  PubMed Central  Google Scholar 

  • Risi, S., Lord, C., Gotham, K., Corsello, C., Chrysler, C., Szatmari, P., & Pickles, A. (2006). Combining information from multiple sources in the diagnosis of autism spectrum disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 45(9), 1094–1103.

    Article  Google Scholar 

  • Robins, D. L., Casagrande, K., Barton, M., Chen, C. M. A., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37–45.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rogers, C. L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism, 20(7), 820–831.

    Article  PubMed  Google Scholar 

  • Rutherford, M., Burns, M., Gray, D., Bremner, L., Clegg, S., Russell, L., O’Hare, A. (2018). Improving efficiency and quality of the children’s ASD diagnostic pathway: Lessons learned from practice. Journal of Autism and Developmental Disorders, 48(5), 1579–1595.

    Article  PubMed  Google Scholar 

  • Rutherford, M., McKenzie, K., Forsyth, K., McCartney, D., O’Hare, A., McClure, I., & Irvine, L. (2016). Why are they waiting? Exploring professional perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children. Research in Autism Spectrum Disorders, 31, 53–65.

    Article  Google Scholar 

  • Rutter, M., Bailey, A., & Lord, C. (2003). The social communication questionnaire: Manual. Western Psychological Services.

  • Ruzich, E., Allison, C., Smith, P., Watson, P., Auyeung, B., Ring, H., & Baron-Cohen, S. (2015). Measuring autistic traits in the general population: A systematic review of the Autism-Spectrum Quotient (AQ) in a nonclinical population sample of 6,900 typical adult males and females. Molecular Autism, 6(1), 2.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular Autism, 7(1), 10.

    Article  PubMed  PubMed Central  Google Scholar 

  • Sacrey, L. A. R., Bennett, J. A., & Zwaigenbaum, L. (2015). Early infant development and intervention for autism spectrum disorder. Journal of Child Neurology, 30(14), 1921–1929.

    Article  PubMed  Google Scholar 

  • Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., … Baio, J. (2009). Timing of identification among children with an autism spectrum disorder: Findings from a population-based surveillance study. Journal of the American Academy of Child & Adolescent Psychiatry, 48(5), 474–483.

    Article  Google Scholar 

  • Sparrow, S. S., Cicchetti, D., & Balla, D. A. (2005). Vineland adaptive behavior scales – 2nd edition manual. Minneapolis: NCS Pearson, Inc.

    Google Scholar 

  • Stadnick, N., Brookman-Frazee, L., Williams, K. N., Cerda, G., & Akshoomoff, N. (2015). A pilot study examining the use of the autism diagnostic observation schedule in community-based mental health clinics. Research in Autism Spectrum Disorders, 20, 39–46.

    Article  PubMed  PubMed Central  Google Scholar 

  • Turner, L. M., Stone, W. L., Pozdol, S. L., & Coonrod, E. E. (2006). Follow-up of children with autism spectrum disorders from age 2 to age 9. Autism, 10(3), 243–265.

    Article  PubMed  Google Scholar 

  • Unigwe, S., Buckley, C., Crane, L., Kenny, L., Remington, A., & Pellicano, E. (2017). GPs’ certainty in caring for their patients on the autism spectrum: An online self-report study. British Journal of General Practice, 67(659), e445–e452.

    Article  Google Scholar 

  • Williams, M. E., Atkins, M., & Soles, T. (2009). Assessment of autism in community settings: Discrepancies in classification. Journal of Autism and Developmental Disorders, 39(4), 660–669.

    Article  PubMed  Google Scholar 

  • Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., Pierce, K. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136(Supplement 1), S60–S81.

    Article  PubMed  Google Scholar 

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Acknowledgments

This research was supported by a Grant from Cognoa, Inc. The authors would like to thank the project coordinators, research staff, and clinicians at each site for their assistance (i.e., Rebecca Brewster, Connie Brooks, Heather Dyer, Casey Irwin, Kristy Jackson, Melissa Mahurin, Amy Nicholson, Justine Park, Madeline Santulli, Amanda Shocklee, Nicole Takahashi, and Alison Vehorn). We are very grateful to the families and participants who made this study possible.

Author Contributions

CGM conceived and drafted the manuscript and performed statistical analyses. CCB, LAC, SMK, ZW, and CL participated in the design and coordination of the study, and assisted with preparation of the draft. All authors read and approved the final manuscript.

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Authors and Affiliations

  1. University of Western Ontario, Western Interdisciplinary Research Building, Perth Drive, London, ON, N6A 5B7, Canada

    Christina G. McDonnell

  2. Department of Pediatrics, Medical University of South Carolina, Charleston, USA

    Catherine C. Bradley & Laura A. Carpenter

  3. Department of Health Psychology and Thompson Center for Autism and Neurodevelopmental Disorders, University of Missouri, Columbia, MO, USA

    Stephen M. Kanne

  4. UCLA Institute for Precision Health, Los Angeles, USA

    Clara Lajonchere

  5. Department of Pediatrics, Vanderbilt Kennedy Center, Vanderbilt University Medical Center, Nashville, USA

    Zachary Warren

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  1. Christina G. McDonnell
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Correspondence to Christina G. McDonnell.

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McDonnell, C.G., Bradley, C.C., Kanne, S.M. et al. When Are We Sure? Predictors of Clinician Certainty in the Diagnosis of Autism Spectrum Disorder. J Autism Dev Disord 49, 1391–1401 (2019). https://doi.org/10.1007/s10803-018-3831-3

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