Helping Parents with the Initial Diagnosis of Autism: Parent-Informed Guidance for Clinicians

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Smith, I. C., Cox, B. E., & W White, S. (2019). Helping Parents with the Initial Diagnosis of Autism: Parent-Informed Guidance for Clinicians. Evidence-Based Practice in Child and Adolescent Mental Health, 4(3), 296-306. https://doi.org/10.1080/23794925.2019.1626781

Publication date: 3 Jun 2019 Added to AutiHub: 8 Aug 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Isaac C. Smith
  2. Bradley E. Cox *
  3. Susan W White

Abstract

Thousands of parents each year inform their child about a diagnosis of autism spectrum disorder, and most parents feel unprepared for this task. Although we are now able to reliably diagnose ASD very early in life, almost no empirical literature exists for clinicians on how to help parents educate their diagnosed child. This process must be conducted in a way that is sensitive to the child’s developmental needs while promoting an accepting and non-stigmatizing stance toward the diagnosis. This commentary is offered to help clinicians guide parents through this process. Rooted in a prior review of the literature as well as clinical experience on this topic and input from a parent of a child with ASD, we outline various factors parents may wish to consider in preparing to disclose ASD diagnoses, including rehearsal or practice of disclosure conversations, tailoring language to their child’s presentation, providing concise and accurate information, anticipating and providing space for children to react and process, and framing the discussion as a starting point for further conversation.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 13:58.

Cited references
48
With a DOI
41
Without a DOI, from raw bibliography text
7
2 / 48 (4.2%) cited references include at least one author identified as autistic.
References with data to complete
1 / 48 (2.1%)
References with detected author names
48 / 48 (100.0%)
Without detected author names
0
Without a structured title
1
Without a stable identifier
7
References with raw author names still to review
0
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
219
From DOI or external metadata
219
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
67 / 219 (30.6%) names are linked to an author already present in AutiHub. 152 / 219 (69.4%) names are not yet linked.
Names linked to a person identified as autistic
5 / 219 (2.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 5 / 67 (7.5%). Distinct people identified as autistic: 5 / 181 (2.8%).
  1. Carla A. Mazefsky , Susan W White (2014). Emotion Regulation . Child and Adolescent Psychiatric Clinics of North America, 23(1), 15-24. Elsevier BV.
    Type: Article DOI: 10.1016/j.chc.2013.07.002 OpenAlex: https://openalex.org/W100976496
    Crossref OpenAlex OpenCitations
  2. American Psychological Association (2017). Ethical principles of psychologists and code of conduct . Ethical principles of psychologists and code of conduct.
    Type: Other
    Crossref
  3. Cara E. Pugliese , Lauren Kenworthy , Vanessa Bal , Gregory L. Wallace , Benjamin E. Yerys , Brenna Maddox et al. (2015). Replication and Comparison of the Newly Proposed ADOS-2, Module 4 Algorithm in ASD Without ID: A Multi-site Study . Journal of Autism and Developmental Disorders, 45(12), 3919-3931. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2586-3 OpenAlex: https://openalex.org/W1942209539
    Crossref OpenAlex OpenCitations
  4. So Hyun Kim , Rhea Paul , Helen Tager‐Flusberg , Catherine Lord (2014). Language and Communication in Autism . Handbook of Autism and Pervasive Developmental Disorders, Fourth Edition. Wiley.
    Type: Other DOI: 10.1002/9781118911389.hautc10 OpenAlex: https://openalex.org/W1551896154
    OpenAlex
  5. Ligia Antezana , Angela Scarpa , Andrew Valdespino , Jordan Albright , John A. Richey (2017). Rural Trends in Diagnosis and Services for Autism Spectrum Disorder . Frontiers in Psychology, 8, 590. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2017.00590 OpenAlex: https://openalex.org/W2609879974
    Crossref OpenAlex OpenCitations
  6. Janice Mulligan , Radha MacCulloch , Bethany Good , David Nicholas (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. Informa UK Limited.
    Type: Article DOI: 10.1080/15332985.2012.664487 OpenAlex: https://openalex.org/W1594891231
    Crossref OpenAlex OpenCitations
  7. Charlton, James I. (1998). Nothing about us without us: disability oppression and empowerment . Choice Reviews Online, 36(01), 36-0640-36-0640. American Library Association.
    Type: Article DOI: 10.5860/choice.36-0640 OpenAlex: https://openalex.org/W1568037033
    OpenAlex
  8. Jon Baio , Lisa Wiggins , Deborah L. Christensen , Matthew J Maenner , Julie Daniels , Zachary Warren et al. (2018). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014 . MMWR. Surveillance Summaries, 67(6), 1-23. Centers for Disease Control MMWR Office.
    Type: Article DOI: 10.15585/mmwr.ss6706a1 OpenAlex: https://openalex.org/W2614349964
    Crossref OpenAlex OpenCitations
  9. DAVID S. MANDELL , Lisa D. Wiggins , Laura Arnstein Carpenter , Julie Daniels , Carolyn DiGuiseppi , Maureen S. Durkin et al. (2009). Racial/Ethnic Disparities in the Identification of Children With Autism Spectrum Disorders . American Journal of Public Health, 99(3), 493-498. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2007.131243 OpenAlex: https://openalex.org/W1969090439
    Crossref OpenAlex OpenCitations
  10. Elisabeth Becker , Gohara Yvette Yehia , Marizilda Fleury Donatelli , Mary Dolores Ewerton Santiago (2002). Interventive assessment with children and their parents in group meetings: Professional training and storybook feedback. The Humanistic Psychologist, 30(1-2), 114-124. American Psychological Association (APA).
    Type: Article DOI: 10.1080/08873267.2002.9977027 OpenAlex: https://openalex.org/W1988553905
    Crossref OpenAlex OpenCitations
  11. Lise Mogensen , Jan Mason (2015). The meaning of a label for teenagers negotiating identity: experiences with autism spectrum disorder . Sociology of Health & Illness, 37(2), 255-269. Wiley.
    Type: Article DOI: 10.1111/1467-9566.12208 OpenAlex: https://openalex.org/W2019639281
    Crossref OpenAlex OpenCitations
  12. Sylvie Berthoz , Elisabeth L. Hill (2005). The validity of using self-reports to assess emotion regulation abilities in adults with autism spectrum disorder . European Psychiatry, 20(3), 291-298. Cambridge University Press (CUP).
    Type: Article DOI: 10.1016/j.eurpsy.2004.06.013 OpenAlex: https://openalex.org/W2131312005
    Crossref OpenAlex OpenCitations
  13. Robin P. Goin-Kochel , Sarika U. Peters , Diane Treadwell-Deering (2008). Parental reports on the prevalence of co-occurring intellectual disability among children with autism spectrum disorders . Research in Autism Spectrum Disorders, 2(3), 546-556. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2007.11.002 OpenAlex: https://openalex.org/W2052170483
    Crossref OpenAlex OpenCitations
  14. Susan W White , Carla A. Mazefsky , Gabriel S. Dichter , Pearl H. Chiu , John A. Richey , Thomas H. Ollendick (2014). Social‐cognitive, physiological, and neural mechanisms underlying emotion regulation impairments: understanding anxiety in autism spectrum disorder . International Journal of Developmental Neuroscience, 39(1), 22-36. Wiley.
    Type: Article DOI: 10.1016/j.ijdevneu.2014.05.012 OpenAlex: https://openalex.org/W1964527618
    Crossref OpenAlex OpenCitations
  15. Nancy C. Brady , Susan Bruce , Amy Goldman , Karen A. Erickson , Beth Mineo , Bill T. Ogletree et al. (2016). Communication Services and Supports for Individuals With Severe Disabilities: Guidance for Assessment and Intervention . American Journal on Intellectual and Developmental Disabilities, 121(2), 121-138. Informa UK Limited.
    Type: Article DOI: 10.1352/1944-7558-121.2.121 OpenAlex: https://openalex.org/W2277649489
    Crossref OpenAlex OpenCitations
  16. Brian Reichow , Allison Shefcyk , Mary Beth Bruder (2013). Quality comparison of websites related to developmental disabilities . Research in Developmental Disabilities, 34(10), 3077-3083. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2013.06.013 OpenAlex: https://openalex.org/W2001829524
    Crossref OpenAlex OpenCitations
  17. Clare A. Brogan , Christina Knussen (2003). The Disclosure of a Diagnosis of an Autistic Spectrum Disorder . Autism, 7(1), 31-46. SAGE Publications.
    Type: Article DOI: 10.1177/1362361303007001004 OpenAlex: https://openalex.org/W2054206839
    Crossref OpenAlex OpenCitations
  18. Jaci C. Huws , Robert S. P. Jones (2008). Diagnosis, disclosure, and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism . J Intellect Disabil Res, 33(2), 99. Informa UK Limited.
    Type: Article DOI: 10.1080/13668250802010394 OpenAlex: https://openalex.org/W2072336624
    Crossref OpenAlex OpenCitations
  19. Luisa Ruiz Calzada , Nancy Pistrang , Will Mandy (2012). High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families . Journal of Autism and Developmental Disorders, 42(2), 230-243. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-011-1238-5 OpenAlex: https://openalex.org/W2076107462
    Crossref OpenAlex OpenCitations
  20. Teresa Ailing Moh , Iliana Magiati (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. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2011.05.011 OpenAlex: https://openalex.org/W2063023939
    Crossref OpenAlex OpenCitations
  21. James Charlton (1998). Nothing About Us Without UsDisability Oppression and Empowerment . University of California Press.
    Type: Book DOI: 10.1525/california/9780520207950.001.0001 OpenAlex: https://openalex.org/W2976773352
    Crossref OpenAlex OpenCitations
  22. Helen Tager‐Flusberg , Rhea Paul , Catherine Lord (2005). Language and Communication in Autism . In Handbook of Autism and Pervasive Developmental Disorders (pp. 335-364). Wiley.
    Type: Book chapter DOI: 10.1002/9780470939345.ch12 OpenAlex: https://openalex.org/W3023975726
    Crossref OpenAlex OpenCitations
  23. Deborah J. Tharinger , Stephen E. Finn , Alison Wilkinson , Tamara DeHay , Victoria T. Parton , Karen Elaine Bailey et al. (2008). Providing psychological assessment feedback to children through individualized fables. Professional Psychology: Research and Practice, 39(6), 610-618. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0735-7028.39.6.610 OpenAlex: https://openalex.org/W2003995198
    Crossref OpenAlex OpenCitations
  24. John N. Constantino (2013). Social Responsiveness Scale . In Social responsiveness scale (pp. 2919-2929). Springer New York.
    Type: Book chapter DOI: 10.1007/978-1-4419-1698-3_296 OpenAlex: https://openalex.org/W4232252309
    Crossref OpenAlex
  25. Paul Shattuck , Maureen S. Durkin , Matthew Maenner , Craig Newschaffer , DAVID S. MANDELL , Lisa Wiggins et al. (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. Elsevier BV.
    Type: Article DOI: 10.1097/chi.0b013e31819b3848 OpenAlex: https://openalex.org/W2098490628
    Crossref OpenAlex OpenCitations
  26. Naomi Davis , Alice S. Carter (2008). Parenting Stress in Mothers and Fathers of Toddlers with Autism Spectrum Disorders: Associations with Child Characteristics . Journal of Autism and Developmental Disorders, 38(7), 1278-1291. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-007-0512-z OpenAlex: https://openalex.org/W2058714004
    Crossref OpenAlex OpenCitations
  27. Isaac C. Smith , Jeffrey Edelstein , Bradley E. Cox * , Susan W White (2018). Parental Disclosure of ASD Diagnosis to the Child: A Systematic Review . Evidence-Based Practice in Child and Adolescent Mental Health, 3(2), 98-105. Informa UK Limited.
    Type: Article DOI: 10.1080/23794925.2018.1435319 OpenAlex: https://openalex.org/W2792276740
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  28. Carla A. Mazefsky , John Herrington , Matthew Siegel , Angela Scarpa , Brenna Maddox , Lawrence Scahill et al. (2013). The Role of Emotion Regulation in Autism Spectrum Disorder . Journal of the American Academy of Child & Adolescent Psychiatry, 52(7), 679-688. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2013.05.006 OpenAlex: https://openalex.org/W2033011309
    Crossref OpenAlex OpenCitations
  29. Maureen S. Durkin , Matthew J. Maenner , Jon Baio , Deborah Christensen , Julie Daniels , Robert Fitzgerald et al. (2017). Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities . American Journal of Public Health, 107(11), 1818-1826. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2017.304032 OpenAlex: https://openalex.org/W2757083081
    Crossref OpenAlex
  30. Patricia Howlin , Susan Goode , Jane Hutton , Michael Rutter (2004). Adult outcome for children with autism . Journal of Child Psychology and Psychiatry, 45(2), 212-229. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.2004.00215.x OpenAlex: https://openalex.org/W2046265374
    Crossref OpenAlex OpenCitations
  31. Field S. (2015). The importance of family involvement for promoting self-determination in adolescents with autism and other developmental disabilities . The importance of family involvement for promoting self-determination in adolescents with autism and other developmental disabilities.
    Type: Other
    Crossref
  32. Emily Simonoff , Andrew Pickles , Tony Charman , Susie Chandler , Tom Loucas , Gillian Baird (2008). Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample . Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921-929. Elsevier BV.
    Type: Article DOI: 10.1097/chi.0b013e318179964f OpenAlex: https://openalex.org/W2158063953
    Crossref OpenAlex OpenCitations
  33. M. Mary Konstantareas , Kelly Stewart (2006). Affect Regulation and Temperament in Children with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 36(2), 143-154. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-005-0051-4 OpenAlex: https://openalex.org/W2061609844
    Crossref OpenAlex OpenCitations
  35. Marian E. Williams , Monique Atkins , Tamara Soles (2009). Assessment of Autism in Community Settings: Discrepancies in Classification . Journal of Autism and Developmental Disorders, 39(4), 660-669. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-008-0668-1 OpenAlex: https://openalex.org/W2062617341
    Crossref OpenAlex OpenCitations
  36. Le Couteur A. (2003). Autism diagnostic interview-revised . Autism diagnostic interview-revised.
    Type: Other
    Crossref
  37. Catherine Lord (2012). Autism Diagnostic Observation Schedule: ADOS-2 . Autism Diagnostic Observation Schedule: ADOS-2.
    Type: Other
    Crossref
  38. Carolien Rieffe , Mark Meerum Terwogt , Katerina Kotronopoulou (2007). Awareness of Single and Multiple Emotions in High-functioning Children with Autism . Journal of Autism and Developmental Disorders, 37(3), 455-465. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-006-0171-5 OpenAlex: https://openalex.org/W2154619660
    Crossref OpenAlex OpenCitations
  39. Sharon Field , Alan Hoffman (1999). The Importance of Family Involvement for Promoting Self-Determination in Adolescents with Autism and Other Developmental Disabilities . Focus on Autism and Other Developmental Disabilities, 14(1), 36-41. SAGE Publications.
    Type: Article DOI: 10.1177/108835769901400105 OpenAlex: https://openalex.org/W2088906737
    OpenAlex
  40. Midence K. (1999). CIT0025 Midence, K. O’Neill, M., 3(3), 273.
    Type: Other
    Crossref
  41. Schieve, Laura A. , Daniels, Julie , Christensen, Deborah , Yeargin-Allsopp, Marshalyn , Imm, Pamela , Baio, Jon et al. (2017). Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities . UNC Libraries. The University of North Carolina at Chapel Hill University Libraries.
    Type: Article DOI: 10.17615/rbdp-n598 OpenAlex: https://openalex.org/W4299966533
    OpenCitations
  42. Susan W White , Thomas H. Ollendick , Bethany C. Bray (2011). College students on the autism spectrum . Autism, 15(6), 683-701. SAGE Publications.
    Type: Article DOI: 10.1177/1362361310393363 OpenAlex: https://openalex.org/W2133291294
    Crossref OpenAlex OpenCitations
  43. Kenny Midence , Meena O’neill (1999). The Experience of Parents in the Diagnosis of Autism . Autism, 3(3), 273-285. SAGE Publications.
    Type: Article DOI: 10.1177/1362361399003003005 OpenAlex: https://openalex.org/W2142792010
    OpenAlex
  44. Rivera J. (2015). Inside out [Motion Picture] . Inside out [Motion Picture].
    Type: Other
    Crossref
  45. Michael Rutter , Ann LeCouteur , Catherine Lord (2016). Autism Diagnostic Interview-Revised . PsycTESTS Dataset, 30. American Psychological Association (APA).
    Type: Dataset DOI: 10.1037/t18128-000 OpenAlex: https://openalex.org/W2914077598
    OpenAlex
  46. Ward E. (2014). Parental accountws of sharing an autism spectrum diagnosis with their child: A thematic analysis . Parental accountws of sharing an autism spectrum diagnosis with their child: A thematic analysis.
    Type: Other
    Crossref
  47. Gary G. Ford (2000). “Ethical Principles of Psychologists and Code of Conduct” . In Ethical Reasoning in the Mental Health Professions (pp. 23-40). CRC Press.
    Type: Book chapter DOI: 10.4324/9781482274400-4 OpenAlex: https://openalex.org/W3080738154
    OpenAlex
  48. American Psychological Association (1992). Ethical Principles of Psychologists and Code of Conduct. American Psychologist, 47(12), 1597-1611. American Psychological Association (APA).
    Type: Article DOI: 10.1037//0003-066x.47.12.1597 OpenAlex: https://openalex.org/W4235631148
    OpenAlex