Parents’ experiences of an early autism diagnosis: Insights into their needs

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

Rabba, A. S., Dissanayake, C., & Barbaro, J. (2019). Parents’ experiences of an early autism diagnosis: Insights into their needs. Research in Autism Spectrum Disorders, 66, 101415. https://doi.org/10.1016/j.rasd.2019.101415

Publication date: 6 Jul 2019 Added to AutiHub: 7 Sep 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. Aspasia Stacey Rabba
  2. Cheryl Dissanayake
  3. Josephine Barbaro *

Abstract

No structured abstract stored for this reference.

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: 12 Sep 2026 18:18.

Cited references
45
With a DOI
41
Without a DOI, from raw bibliography text
3
3 / 45 (6.7%) cited references include at least one author identified as autistic.
References with data to complete
0 / 45 (0.0%)
References with detected author names
45 / 45 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
3
References with raw author names still to review
0
References with external metadata lookup issues
0
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
155
From DOI or external metadata
155
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
35 / 155 (22.6%) names are linked to an author already present in AutiHub. 120 / 155 (77.4%) names are not yet linked.
Names linked to a person identified as autistic
3 / 155 (1.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 3 / 35 (8.6%). Distinct people identified as autistic: 1 / 134 (0.7%).
  1. Ru Ying Cai , Amanda Richdale (2016). Educational Experiences and Needs of Higher Education Students with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(1), 31-41. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2535-1 OpenAlex: https://openalex.org/W1457101468
    Crossref OpenAlex OpenCitations
  2. Mandy Abbott , Paul Bernard , Jenny Forge (2013). Communicating a diagnosis of Autism Spectrum Disorder - a qualitative study of parents’ experiences . Clinical Child Psychology and Psychiatry, 18(3), 370-382. SAGE Publications.
    Type: Article DOI: 10.1177/1359104512455813 OpenAlex: https://openalex.org/W2109035722
    Crossref OpenAlex OpenCitations
  3. Mickey Keenan , Karola Dillenburger , Alvin Doherty , Tony Byrne , Stephen Gallagher (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. Wiley.
    Type: Article DOI: 10.1111/j.1468-3148.2010.00555.x OpenAlex: https://openalex.org/W2070637045
    Crossref OpenAlex OpenCitations
  4. M. Broberg (2011). Expectations of and reactions to disability and normality experienced by parents of children with intellectual disability in Sweden . Child: Care, Health and Development, 37(3), 410-417. Wiley.
    Type: Article DOI: 10.1111/j.1365-2214.2010.01198.x OpenAlex: https://openalex.org/W1488532984
    Crossref OpenAlex OpenCitations
  5. Deborah K. Anderson , Jessie W. Liang , Catherine Lord (2014). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders . Journal of Child Psychology and Psychiatry, 55(5), 485-494. Wiley.
    Type: Article DOI: 10.1111/jcpp.12178 OpenAlex: https://openalex.org/W2092522680
    Crossref OpenAlex OpenCitations
  6. Laurie M. Fortier , Richard L. Wanlass (1984). Family Crisis following the Diagnosis of a Handicapped Child . Family Relations, 33(1), 13. JSTOR.
    Type: Article DOI: 10.2307/584585 OpenAlex: https://openalex.org/W2327761929
    Crossref OpenAlex OpenCitations
  7. Sandra L. Harris , Jan S. Handleman (2000). Age and IQ at Intake as Predictors of Placement for Young Children with Autism: A Four- to Six-Year Follow-Up . Journal of Autism and Developmental Disorders, 30(2), 137-142. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1023/a:1005459606120 OpenAlex: https://openalex.org/W1536921744
    Crossref OpenAlex OpenCitations
  8. Australian Bureau of Statistics (2012). Autism in Australia .
    Type: Other
    Crossref
  9. Katherine E Pickard , Brooke R Ingersoll (2016). Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use . Autism, 20(1), 106-115. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315569745 OpenAlex: https://openalex.org/W2208546705
    Crossref OpenAlex OpenCitations
  10. Melinda Randall , Emma Sciberras , Amanda Brignell , Elfriede Ihsen , Daryl Efron , Cheryl Dissanayake et al. (2016). Autism spectrum disorder: Presentation and prevalence in a nationally representative Australian sample . Australian & New Zealand Journal of Psychiatry, 50(3), 243-253. SAGE Publications.
    Type: Article DOI: 10.1177/0004867415595287 OpenAlex: https://openalex.org/W1863812935
    Crossref OpenAlex OpenCitations
  12. Irina E. Poslawsky , Fabiënne B. A. Naber , Emma Van Daalen , Herman Van Engeland (2014). Parental Reaction to Early Diagnosis of Their Children’s Autism Spectrum Disorder: An Exploratory Study . Child Psychiatry & Human Development, 45(3), 294-305. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10578-013-0400-z OpenAlex: https://openalex.org/W2018809378
    Crossref OpenAlex OpenCitations
  13. Gregory S. Liptak , Lauren B. Benzoni , Daniel W. Mruzek , Karen W. Nolan , Melissa A. Thingvoll , Christine M. Wade et al. (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 & Behavioral Pediatrics, 29(3), 152-160. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0b013e318165c7a0 OpenAlex: https://openalex.org/W1963964632
    Crossref OpenAlex OpenCitations
  14. Catherine Bent , Josephine Barbaro * , Cheryl Dissanayake (2017). Change in Autism Diagnoses Prior to and Following the Introduction of DSM-5 . Journal of Autism and Developmental Disorders, 47(1), 163-171. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2942-y OpenAlex: https://openalex.org/W2552972628
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  15. Colin G. Pottie , Kathleen M. Ingram (2008). Daily stress, coping, and well-being in parents of children with autism: A multilevel modeling approach. Journal of Family Psychology, 22(6), 855-864. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0013604 OpenAlex: https://openalex.org/W2155737447
    Crossref OpenAlex OpenCitations
  16. John H. McGrew , Melissa L. Keyes (2014). Caregiver stress during the first year after diagnosis of an Autism Spectrum Disorder . Research in Autism Spectrum Disorders, 8(10), 1373-1385. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2014.07.011 OpenAlex: https://openalex.org/W1967019367
    Crossref OpenAlex OpenCitations
  17. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  18. Lynette Talbot , Glenda Verrinder (2005). Promoting Health: The Primary Health Care Approach .
    Type: Book OpenAlex: https://openalex.org/W1979000968
    OpenAlex
  19. Géraldine Dawson , Emily JH Jones , Kristen Merkle , Kaitlin Venema , Rachel Lowy , Susan Faja et al. (2012). Early Behavioral Intervention Is Associated With Normalized Brain Activity in Young Children With Autism . Journal of the American Academy of Child & Adolescent Psychiatry, 51(11), 1150-1159. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2012.08.018 10.17615/cwnd-bm03
    OpenCitations
  20. Kübler-Ross (1970). On death and dying: What the dying have to teach doctors, nurses, clergy and their own families . Annals of Internal Medicine, 73(6), 1060-1060. American College of Physicians.
    Type: Article DOI: 10.7326/0003-4819-73-6-1060_8 OpenAlex: https://openalex.org/W1982811140
    Crossref OpenAlex
  22. Shauna L. Shapiro , Linda E. Carlson , John A. Astin , Benedict Freedman (2006). Mechanisms of mindfulness . Journal of Clinical Psychology, 62(3), 373-386. Wiley.
    Type: Article DOI: 10.1002/jclp.20237 OpenAlex: https://openalex.org/W2001783912
    Crossref OpenAlex OpenCitations
  23. Laura Crane , James W Chester , Lorna Goddard , Lucy A Henry , Elisabeth L. Hill (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom . Autism, 20(2), 153-162. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315573636 OpenAlex: https://openalex.org/W2118478153
    Crossref OpenAlex OpenCitations
  24. Nikko S. Da Paz , Bryna Siegel , Michael A. Coccia , Elissa S. Epel (2018). Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism . Journal of Autism and Developmental Disorders, 48(6), 1971-1981. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3450-4 OpenAlex: https://openalex.org/W2782297552
    Crossref OpenAlex OpenCitations
  25. Brian Watermeyer (2009). Claiming loss in disability . Disability & Society, 24(1), 91-102. Informa UK Limited.
    Type: Article DOI: 10.1080/09687590802535717 OpenAlex: https://openalex.org/W2031123139
    Crossref OpenAlex OpenCitations
  26. Géraldine Dawson (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder . Development and Psychopathology, 20(3), 775-803. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0954579408000370 OpenAlex: https://openalex.org/W2116697664
    Crossref OpenAlex OpenCitations
  27. Esther Ben Itzchak , Eliezer Lahat , Ruth Burgin , A. Ditza Zachor (2008). Cognitive, behavior and intervention outcome in young children with autism . Research in Developmental Disabilities, 29(5), 447-458. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2007.08.003 OpenAlex: https://openalex.org/W2039371036
    Crossref OpenAlex OpenCitations
  28. Géraldine Dawson , Emily JH Jones , Kristen Merkle , Kaitlin Venema , Rachel Lowy , Susan Faja et al. (2012). Early Behavioral Intervention Is Associated With Normalized Brain Activity in Young Children With Autism . Journal of the American Academy of Child & Adolescent Psychiatry, 51(11), 1150-1159. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2012.08.018 OpenAlex: https://openalex.org/W2111874514
    Crossref OpenAlex
  29. David R. Thomas (2006). A General Inductive Approach for Analyzing Qualitative Evaluation Data . American Journal of Evaluation, 27(2), 237-246. SAGE Publications.
    Type: Article DOI: 10.1177/1098214005283748 OpenAlex: https://openalex.org/W2150104072
    Crossref OpenAlex OpenCitations
  30. Manuel Fernańdez-Alcántara , Mª Paz García-Caro , Mª Nieves Pérez-Marfil , Cesar Hueso-Montoro , Carolina Laynez-Rubio , Francisco Cruz-Quintana (2016). Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD) . Research in Developmental Disabilities, 55, 312-321. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2016.05.007 OpenAlex: https://openalex.org/W2401492517
    Crossref OpenAlex OpenCitations
  31. Rebecca MacDonald , Diana Parry-Cruwys , Sally Dupere , William Ahearn (2014). Assessing progress and outcome of early intensive behavioral intervention for toddlers with autism . Research in Developmental Disabilities, 35(12), 3632-3644. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2014.08.036 OpenAlex: https://openalex.org/W2106906975
    Crossref OpenAlex OpenCitations
  32. Melissa Raspa , Denise M. Levis , Julia Kish-Doto , Ina Wallace , Catherine Rice , Brian Barger et al. (2015). Examining Parents' Experiences and Information Needs Regarding Early Identification of Developmental Delays . Journal of Developmental & Behavioral Pediatrics, 36(8), 575-585. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000205 OpenAlex: https://openalex.org/W2410011031
    Crossref OpenAlex OpenCitations
  33. Rebecca L. McStay , David Trembath , Cheryl Dissanayake (2014). Stress and Family Quality of Life in Parents of Children with Autism Spectrum Disorder: Parent Gender and the Double ABCX Model . Journal of Autism and Developmental Disorders, 44(12), 3101-3118. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2178-7 OpenAlex: https://openalex.org/W2079026499
    Crossref OpenAlex OpenCitations
  34. Sabine Hennel , Cathy Coates , Christos Symeonides , Alisha Gulenc , Libby Smith , Anna MH Price et al. (2016). Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice . Journal of Paediatrics and Child Health, 52(5), 506-511. Wiley.
    Type: Article DOI: 10.1111/jpc.13157 OpenAlex: https://openalex.org/W2346330773
    Crossref OpenAlex OpenCitations
  35. 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
    Crossref OpenAlex OpenCitations
  36. Patricia Howlin , Anna Asgharian (1999). The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families . Developmental Medicine & Child Neurology, 41(12), 834-839. Wiley.
    Type: Article DOI: 10.1017/s0012162299001656 OpenAlex: https://openalex.org/W2127643458
    Crossref OpenAlex OpenCitations
  37. Roberta L. Woodgate , Christine Ateah , Loretta Secco (2008). Living in a World of Our Own: The Experience of Parents Who Have a Child With Autism . Qualitative Health Research, 18(8), 1075-1083. SAGE Publications.
    Type: Article DOI: 10.1177/1049732308320112 OpenAlex: https://openalex.org/W2146750786
    Crossref OpenAlex OpenCitations
  38. David Oppenheim , Nina Koren-Karie , Smadar Dolev , Nurit Yirmiya (2009). Maternal Insightfulness and Resolution of the Diagnosis Are Associated With Secure Attachment in Preschoolers With Autism Spectrum Disorders . Child Development, 80(2), 519-527. Oxford University Press (OUP).
    Type: Article DOI: 10.1111/j.1467-8624.2009.01276.x OpenAlex: https://openalex.org/W2120184301
    Crossref OpenAlex OpenCitations
  39. Lord (2010). Autism spectrum disorders: Diagnosis, prevalence, and services for children and families . Society for Research in Child Development, 24(2), 1.
    Type: Other
    Crossref
  40. Karen Wachtel , Alice S. Carter (2008). Reaction to diagnosis and parenting styles among mothers of young children with ASDs . Autism, 12(5), 575-594. SAGE Publications.
    Type: Article DOI: 10.1177/1362361308094505 OpenAlex: https://openalex.org/W2157908355
    Crossref OpenAlex OpenCitations
  41. The Victorian ASELCC Team , Giacomo Vivanti , Cheryl Dissanayake (2016). Outcome for Children Receiving the Early Start Denver Model Before and After 48 Months . Journal of Autism and Developmental Disorders, 46(7), 2441-2449. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2777-6 OpenAlex: https://openalex.org/W2324499091
    Crossref OpenAlex OpenCitations
  42. Bodic Rasmussen (2000). Promoting Health: The Primary Health Care Approach . Contemporary Nurse, 9(1), 51-61. Informa UK Limited.
    Type: Article DOI: 10.5172/conu.2000.9.1.57 OpenAlex: https://openalex.org/W2325792463
    OpenAlex
  43. Samantha L. Ward , Karen A. Sullivan , Linda Gilmore (2016). Practitioner Perceptions of the Assessment and Diagnosis of Autism in Australia . Australian Psychologist, 51(4), 272-279. Informa UK Limited.
    Type: Article DOI: 10.1111/ap.12211 OpenAlex: https://openalex.org/W2470746756
    Crossref OpenAlex OpenCitations
  44. Talbot (2017). Promoting health: The primary health care approach .
    Type: Other
    Crossref
  45. Heidi A. Wayment , Kristina A. Brookshire (2018). Mothers’ reactions to their child’s ASD diagnosis: Predictors that discriminate grief from distress . Journal of Autism and Developmental Disorders, 48(4), 1147-1158. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3266-2 OpenAlex: https://openalex.org/W2752526607
    Crossref OpenAlex