About Whom Are We Talking When We Use Intellectual and Developmental Disabilities?

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Tassé, M. J., Havercamp, S. M., Krahn, G., Shogren, K. A., Bonardi, A., Kim, M., Chapman, R., Collaborative, N. R. H. a. F. i. I. L., Andridge, R., Arnold, L. E., Barnhill, J., Bodle, S., Boerner, E., Bourne, M. L., Boyd, B., Brown, C., Buck, A. S., Burkett, S., Burness, M.,..., & Witwer, A. (2024). About Whom Are We Talking When We Use Intellectual and Developmental Disabilities? JAMA Pediatrics, 179(1), 83. https://doi.org/10.1001/jamapediatrics.2024.4552

Publication date: 25 Nov 2024 Added to AutiHub: 27 Oct 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
68
Publication authors identified as autistic
1 / 68 (1.5%)
  1. Marc J. Tassé
  2. Susan M. Havercamp
  3. Gloria Krahn
  4. Karrie A. Shogren
  5. Alexandra Bonardi
  6. Minje Kim
  7. Richard Chapman
  8. NIDILRR RRTC Health and Function in IDD Learning Collaborative
  9. Rebecca Andridge
  10. L. Eugene Arnold
  11. Jarrett Barnhill
  12. Shawn Bodle
  13. Ethan Boerner
  14. Mary Lou Bourne
  15. Brian Boyd
  16. Christine Brown
  17. Andrew S. Buck
  18. Sarah Burkett
  19. Mackenzie Burness
  20. Chelsea Cobranchi
  21. Christopher Cole
  22. Daniel K. Davies
  23. Travis Dresbach
  1. Carnicia Eghan
  2. Mary Lee Fay
  3. Robert Fletcher
  4. Ruben Garcia
  5. Braden Gertz
  6. Erin Harris
  7. Jill Hollway
  8. Margo Izzo
  9. Andrew Jahoda
  10. Rosie Lawrence-Slater
  11. Luc Lecavalier
  12. Andrew Lincoln
  13. Ruth Emmanuel Michael
  14. Arielle Mulligan
  15. Alexa J. Murray
  16. Stacy L. Nonnemacher
  17. Mirian E. Ofonedu
  18. Morénike Giwa Onaiwu *
  19. Eduardo A. Ortiz
  20. Kristin Page
  21. Samantha Perry
  22. Ashley Poling
  23. Thomas Quade
  1. Paula Rabidoux
  2. Robert Rice
  3. Taylor Richardson
  4. Ann Robinson
  5. Margaret Rosencrans
  6. Megan Ryan
  7. Christopher Sanford
  8. Colin Schaffer
  9. John R. Seeley
  10. Annie Song
  11. Mary Sowers
  12. Kristy Stepp
  13. Marci Straughter
  14. Lara Sucheston-Campbell
  15. Christopher Taylor
  16. Katherine Walton
  17. Kelsi Weaver
  18. Michael Wehmeyer
  19. Craig Williams
  20. Derrick K. Willis
  21. Philip Wilson
  22. Andrea Witwer

Abstract

Importance Communicating clearly about who is included in a population group is a critical element to effective dissemination and knowledge transfer. This narrative review highlights the inconsistency as it relates to communicating about individuals with intellectual disability (ID) and developmental disability (DD). Observations There is enormous variability in the use of definitions and abbreviations in the field of intellectual disability and developmental disabilities. The lack of consistency has resulted in widely varying reported rates of prevalence and has contributed to confusion around the interpretation of research and clinical findings, population statistics, and policy decisions. The reported rates of prevalence for developmental disabilities published by different US federal agencies have ranged widely from 3% to 17%. This represents a 5-fold difference. Equally confusing is the inconsistent and ambiguous adoption of initialisms. These initialisms include ID/DD, IDD, and I/DD for which it is not always clear if these initialisms reference separate and independent populations (eg, ID or DD) or populations with co-occurring conditions (eg, persons with ID and DD). This Narrative Review discusses these issues and proposed a number of recommendations that would contribute to enhanced consistency and clarity of understanding for stakeholders, administrators, practitioners, researchers, and policy makers. Conclusion Authors of scholarly works, clinical publications, policies, and position papers are encouraged to provide a clear operational definition as well as the choice of initialisms used (eg, ID/DD, IDD, I/DD, etc) when it is first used.

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: 27 Oct 2026 10:35.

Cited references
25
With a DOI
13
Without a DOI, from raw bibliography text
12
0 / 25 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
10 / 25 (40.0%)
References with detected author names
15 / 25 (60.0%)
Without detected author names
10
Without a structured title
10
Without a stable identifier
12
References with raw author names still to review
10
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
56
From DOI or external metadata
56
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
20
9 / 56 (16.1%) names are linked to an author already present in AutiHub. 47 / 56 (83.9%) names are not yet linked.
Names linked to a person identified as autistic
0 / 56 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 9 (0.0%). Distinct people identified as autistic: 0 / 53 (0.0%).
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