Community Perspectives on Psychological Assessment Reports for Autistic Young Adults

This publication is included in the Autistic Autism Scholarship Project. The publication reports one autistic author, without identifying them by name.

Metadata sources used for this reference

OpenAlex Crossref PubMed BibTeX OpenCitations
Learn more about the sources used

Garagozzo, A., Aziz, A., Kaplan-Kahn, E. A., & Yerys, B. E. (2024). Community Perspectives on Psychological Assessment Reports for Autistic Young Adults. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-024-06591-0

Publication date: 19 Oct 2024 Added to AutiHub: 17 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
4
Autistic authors reported by the publication
1
  1. Ariana Garagozzo
  2. Ardhika Aziz *
  3. Elizabeth A. Kaplan-Kahn
  4. Benjamin E. Yerys

Abstract

PURPOSE: Clinicians rarely solicit community feedback on psychological assessment reports. This study addresses this knowledge gap to: (1) improve the usefulness of reports for patients and families, (2) increase access to needed services, and (3) make reports accessible for autistic people and their families. METHODS: An autistic researcher and a non-autistic researcher jointly conducted qualitative interviews with autistic young adults, caregivers, and a service provider. Participants read a de-identified psychological assessment report about an autistic young adult with intellectual disability seeking resources for his transition to adulthood. Participants provided feedback about (1) how easy the report was to read, (2) how useful the report seemed, and (3) perceptions of language (i.e., empowering/offensive/neutral). RESULTS: Autistic young adults, caregivers, and the service provider all expressed a desire for short and clear reports in bulleted format. Caregivers stressed the importance of (1) using simple language to describe diagnostic testing and (2) including comprehensive resources, and autistic young adults expressed the importance of (1) including information about daily routines, habits, and interests and (2) giving patients' long-term goals the same consideration as caregivers' long-term goals. CONCLUSION: We highlight that standard psychological assessment reports have not effectively met the needs of autistic people and family members. Autistic people and caregivers prefer brief reports written in plain language that include more information about the patients' interests, routines, and preferences and less detailed information about psychological tests. Our findings identify ways to improve the usefulness and readability of psychological assessment reports for autistic people.

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: 19 Sep 2026 01:01.

Cited references
19
With a DOI
17
Without a DOI, from raw bibliography text
2
1 / 19 (5.3%) cited references include at least one author identified as autistic.
References with data to complete
2 / 19 (10.5%)
References with detected author names
17 / 19 (89.5%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
2
References with raw author names still to review
2
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
165
From DOI or external metadata
165
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
23 / 165 (13.9%) names are linked to an author already present in AutiHub. 142 / 165 (86.1%) names are not yet linked.
Names linked to a person identified as autistic
1 / 165 (0.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 1 / 23 (4.3%). Distinct people identified as autistic: 1 / 121 (0.8%).
  1. 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
  2. Kristy A. Anderson , Collette Sosnowy , Alice A. Kuo , Paul Shattuck (2018). Transition of Individuals With Autism to Adulthood: A Review of Qualitative Studies . Pediatrics, 141(Supplement_4), S318-S327. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2016-4300i OpenAlex: https://openalex.org/W2796352845
    Crossref OpenAlex OpenCitations
  3. Lori Y. Peterson , Jamie L. Van Dycke , Rosemary L. Roberson , Jennifer M. Sedaghat (2013). Promoting Student Transition From Entitlement Services to Eligibility Resources . Intervention in School and Clinic, 49(2), 99-107. SAGE Publications.
    Type: Article DOI: 10.1177/1053451213493173 OpenAlex: https://openalex.org/W1973936868
    Crossref OpenAlex OpenCitations
  4. 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
  5. Daniel J. Laxman , Julie Taylor , Leann Smith DaWalt , Jan S. Greenberg , Marsha R. Mailick (2019). Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study . Autism Research, 12(6), 911-921. Wiley.
    Type: Article DOI: 10.1002/aur.2113 OpenAlex: https://openalex.org/W2943778318
    Crossref OpenAlex OpenCitations
  6. Louise Townson , Sue Macauley , Elizabeth Harkness , Andy Docherty , John Dias , Malcolm Eardley et al. (2007). Research project on advocacy and autism . Disability & Society, 22(5), 523-536. Informa UK Limited.
    Type: Article DOI: 10.1080/09687590701427669 OpenAlex: https://openalex.org/W2031752146
    Crossref OpenAlex OpenCitations
  7. Suzie Beart , Gillian Hardy , Linda Buchan (2004). Changing Selves: a Grounded Theory Account of Belonging to a Self‐advocacy Group for People with Intellectual Disabilities 1 . Journal of Applied Research in Intellectual Disabilities, 17(2), 91-100. Wiley.
    Type: Article DOI: 10.1111/j.1360-2322.2004.00186.x OpenAlex: https://openalex.org/W2075595719
    Crossref OpenAlex OpenCitations
  8. Barney G. Glaser , Anselm L. Strauss , Elizabeth Strutzel (1968). The Discovery of Grounded Theory; Strategies for Qualitative Research . Nursing Research, 17(4), 364. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/00006199-196807000-00014 OpenAlex: https://openalex.org/W2146691185
    Crossref OpenAlex OpenCitations
  9. Charlton, J. I. (2011). Nothing about us without us: Disability oppression and empowerment. W. Ross MacDonald School Resource Services Library.
    Type: Other
    Crossref
  10. Matthew J. Maenner , Zachary Warren , Ashley Robinson Williams , Esther Amoakohene , Amanda V. Bakian , Deborah A. Bilder et al. (2023). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020 . MMWR. Surveillance Summaries, 72(2), 1-14. Centers for Disease Control MMWR Office.
    Type: Article DOI: 10.15585/mmwr.ss7202a1 OpenAlex: https://openalex.org/W4360600181
    Crossref OpenAlex OpenCitations
  11. John Elias , Eric Zimak , Andrea Sherwood , Beatriz MacDonald , Nubia Lozano , Jason Long et al. (2021). Do parents implement pediatric neuropsychological report recommendations? The Clinical Neuropsychologist, 35(6), 1117-1133. Informa UK Limited.
    Type: Article DOI: 10.1080/13854046.2020.1720298 OpenAlex: https://openalex.org/W3004661210
    Crossref OpenAlex OpenCitations
  12. Barbara FC van Heijst , Hilde M. Geurts (2015). Quality of life in autism across the lifespan: A meta-analysis . Autism, 19(2), 158-167. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313517053 OpenAlex: https://openalex.org/W2150681219
    Crossref OpenAlex OpenCitations
  14. Laura Graham Holmes , Casey J. Zampella , Caitlin Clements , Joseph P. McCleery , Brenna B. Maddox , Julia Parish-Morris et al. (2020). A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum . Autism Research, 13(6), 970-987. Wiley.
    Type: Article DOI: 10.1002/aur.2275 OpenAlex: https://openalex.org/W3012300037
    Crossref OpenAlex OpenCitations
  15. Greg Guest , Emily Namey , Mario Chen (2020). A simple method to assess and report thematic saturation in qualitative research . PLOS ONE, 15(5), e0232076. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0232076 OpenAlex: https://openalex.org/W3023639742
    Crossref OpenAlex OpenCitations
  16. Paul Spano , Nicole Katz , Tara DeLuco , Christina Octavia Martin , Helen Tam , Daniela Montalto et al. (2021). Parent perceptions of pediatric neuropsychological evaluations: a systematic review . Child Neuropsychology, 27(7), 922-948. Informa UK Limited.
    Type: Article DOI: 10.1080/09297049.2021.1908980 OpenAlex: https://openalex.org/W3156605204
    Crossref OpenAlex OpenCitations
  17. Anne M. Roux , Jessica Rast , Kristy A. Anderson , Julianna A Rava , Paul Shuttuck (2015). Transition into Young Adulthood: National Autism Indicators Report . National Autism Indicators Report: Transition into young adulthood. A.J. Drexel Autism Institute.
    Type: Report DOI: 10.17918/nairtransition2015 OpenAlex: https://openalex.org/W4313567965
    Crossref OpenAlex OpenCitations
  18. Matthew J. Maenner , Kelly A. Shaw , Amanda V. Bakian , Deborah A. Bilder , Maureen S. Durkin , Amy Esler et al. (2021). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018 . MMWR. Surveillance Summaries, 70(11), 1-16. Centers for Disease Control MMWR Office.
    Type: Article DOI: 10.15585/mmwr.ss7011a1 OpenAlex: https://openalex.org/W3216151710
    OpenAlex
  19. What we believe. Autistic Self Advocacy Network. (n.d.). https://autisticadvocacy.org/about-asan/what-we-believe/
    Type: Other
    Crossref