Fetal Alcohol Spectrum Disorder The Importance of Adopting a Standard Definition in Canada
Main Article Content
Abstract
Background and Objective
The manner in which language is used reflects how people in a society view one another. Historically, individuals with disabilities have experienced discrimination through the use of stereotypic or demeaning language. Individuals with Fetal Alcohol Spectrum Disorder (FASD) may be particularly susceptible to these negative impacts, particularly given the stigma associated with the disability. We discuss how individuals with disabilities may be affected by our use of language.
Materials and Methods
Current definitions of FASD from Canadian provincial/territorial, national, and international governments and organizations were collated. Recent academic definitions found in the peer-reviewed literature were also reviewed. All definitions were independently coded by the two authors to identify definitions which were based upon current and emerging evidence and which included factual information about FASD. A standard definition of FASD was developed through an iterative process, including expert consultation and feedback from the larger FASD community
Results
We propose an evidence-based, lay-language standard definition of FASD to be used in a Canadian context, intended to reflect the range of strengths and challenges of individuals with FASD as well as the whole-body implications of the disability.
Conclusion
Our standard definition of FASD provides an opportunity to ensure consistency in language, increase awareness of FASD, promote dignity, and reduce stigma upon people with FASD and their families. We encourage governments, policy makers, service providers, and researchers to adopt the authors standard definition of FASD, with the goal of increasing awareness of FASD, reducing stigma, and improving communication and consistent messaging about the disability.
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How to Cite
Harding, K., Wrath, A., Flannigan, K., Unsworth, K., McFarlane, A., & Pei, J. (2022). Fetal Alcohol Spectrum Disorder: The Importance of Adopting a Standard Definition in Canada. Journal of Fetal Alcohol Spectrum Disorder, 4(SP1), e5-e19. https://doi.org/10.22374/jfasd.v4iSP1.10
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References
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9. Hui D, De La Cruz M, Mori M, et al. Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks. Support Care Cancer. 2013;21(3):659–85. http://dx.doi.org/10.1007/s00520-012-1564-y
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11. Rutherford MA. Standardized nursing language: What does it mean for nursing practice? Online J Issues Nurs. 2008;13(1):1–7.
12. Hicks KA, Mahaffey KW, Mehran R, et al. Cardiovascular and stroke endpoint definitions for clinical trials. Circulation. 2018;137(9):961–72. http://dx.doi.org/10.1161/CIRCULATIONAHA.117.033502
13. Chiong W. Diagnosing and defining disease. J Am Med Assoc. 2001;285(1):89–90. http://dx.doi.org/10.1001/jama.285.1.89-JMS0103-2-1
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15. Kozey M, Siegel LS. Definitions of learning disabilities in Canadian provinces and territories. Can Psychol. 2008;49(2):162–71. http://dx.doi.org/10.1037/0708-5591.49.2.162
16. Harrison A, Holmes A. Easier said than done: Operationalizing the diagnosis of learning disability for use at the postsecondary level in Canada. Can J Sch Psychol. 2012;27(1):12–34. http://dx.doi.org/10.1177/0829573512437021
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20. Flannigan K, Harding K, Reid D. Strengths among individuals with FASD [Internet]. [cited 2018]. Available from: https://canfasd.ca/wp-content/uploads/publications/Strengths-Among-Individuals-with-FASD.pdf
21. Jones KL, Smith DW, Ulleland CN, et al. Pattern of malformation in offspring of chronic alcoholic mothers. Lancet. 1973;301(7815):1267–71. http://dx.doi.org/10.1016/S0140-6736(73)91291-9
22. Stratton K, Howe C, Battaglia FC. Fetal alcohol syndrome: Diagnosis, epidemiology, prevention, clinical trials. Circulation. 2018;137(9):961–72. http://dx.doi.org/10.1161/CIRCULATIONAHA.117.033502
13. Chiong W. Diagnosing and defining disease. J Am Med Assoc. 2001;285(1):89–90. http://dx.doi.org/10.1001/jama.285.1.89-JMS0103-2-1
14. McColl MA, Jaiswal A, Jones S, et al. A review of disability policy in Canada [Internet]. [cited 2017]. Kingston, ON: Canadian Disability Policy Alliance (CDPA). Available from: http://www.disabilitypolicyalliance.ca/wp-content/uploads/2018/01/A-Review-of-Disability-Poli-cy-in-Canada-3rd-edition-Final-1-1.pdf
15. Kozey M, Siegel LS. Definitions of learning dis-abilities in Canadian provinces and territories. Can Psychol. 2008;49(2):162–71. http://dx.doi.org/10.1037/0708-5591.49.2.162
16. Harrison A, Holmes A. Easier said than done: Operationalizing the diagnosis of learning disability for use at the postsecondary level in Canada. Can J Sch Psychol. 2012;27(1):12–34. http://dx.doi.org/10.1177/0829573512437021
17. Dionne CE, Dunn KM, Croft PR, et al. A consensus approach toward the standardization of back pain definitions for use in prevalence studies. Spine (Phila Pa 1976). 2008;33(1):95–103. http://dx.doi.org/10.1097/BRS.0b013e31815e7f94
18. Mills RJ, Young CA. A medical definition of fatigue in multiple sclerosis. Quart J Med (QJM). 2008;101(1):49–60. http://dx.doi.org/10.1093/qjmed/hcm122
19. Chan LS, Razzaque Ahmed A, Anhalt GJ, et al. The first international consensus on mucous membrane pemphigoid: Definition, diagnostic criteria, pathogenic factors, medical treatment and prognostic indicators. Arch Dermatol. 2002;138(3):370–9. http://dx.doi.org/10.1001/archderm.138.3.370
20. Flannigan K, Harding K, Reid D. Strengths among individuals with FASD [Internet]. [cited 2018]. Available from: https://canfasd.ca/wp-content/uploads/ publications/Strengths-Among-Individuals-with-FASD.pdf
21. Jones KL, Smith DW, Ulleland CN, et al. Pattern of malformation in offspring of chronic alcoholic mothers. Lancet. 1973;301(7815):1267–71. http://dx.doi.org/10.1016/S0140-6736(73)91291-9
22. Stratton K, Howe C, Battaglia FC. Fetal alcohol syndrome: Diagnosis, epidemiology, prevention, and treatment. Washington, DC: National Academy Press; 1996.
23. Astley SJ, Clarren SK. Diagnostic guide for fetal alcohol syndrome and related conditions: The 4-digit diagnostic code. Seattle, WA: University of Washington; 1997.
24. Hoyme HE, Coles CD. Alcohol-related neurobehavioral disabilities: Need for further definition and com-mon terminology. Pediatrics. 2016;138(4):e20161999. http://dx.doi.org/10.1542/peds.2016-1999
25. Chudley AE, Conry J, Cook JL, et al. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Can Med Ass J (CMAJ). 2005;172(5 Suppl.):S1–21. http://dx.doi.org/10.1503/cmaj.1040302
26. Cook JL, Green CR, Lilley CM, et al. Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan. Can Med Ass J (CMAJ). 2015;188(3): 191–7. http://dx.doi.org/10.1503/cmaj.141593
27. Choate P, Badry D. Stigma as a dominant discourse in fetal alcohol spectrum disorder. Adv Dual Diagn. 2019;12(1–2):36–52. http://dx.doi.org/10.1108/ADD-05-2018-0005
28. Choate P, Badry D, MacLaurin B, et al. Fetal alcohol spectrum disorder: What does public awareness tell us about prevention programming? Int J Environ Res Public Health. 2019;16(21):4229. http://dx.doi.org/10.3390/ijerph16214229
29. Morrison K, Harding K, Wolfson L. Individuals with fetal alcohol spectrum disorder and experiences of stigma [Internet]. [cited 2019]. Available from: https://canfasd.ca/wp-content/ uploads/publications/Individuals-with-FASD-and-Experiences-of-Stigma-FINAL.pdf
30. Bell E, Andrew G, Chudley AE, et al. It’s a shame! Stigma against fetal alcohol spectrum disorder: Examining the ethical implications for public health practices and policies. Public Health Ethics. 2016;9(1):65–77. http://dx.doi.org/10.1093/phe/phv012
31. Jones KL, Streissguth AP. Fetal alcohol syndrome and fetal alcohol spectrum disorders: A brief his-tory. J Psych Law. 2010;38:373–82. http://dx.doi.org/10.1177/009318531003800402
32. Agency for Healthcare Research and Quality. Communication and dissemination strategies to facilitate the use of health and health care evidence [Internet]. [cited 2012]. Available from: www.effectivehealthcare.ahrq.gov
33. Davidson B. Storytelling and evidence-based policy: Lessons from the grey literature. Palgrave Commun. 2017;3(1):1–10. http://dx.doi.org/10.1057/palcomms.2017.93
34. Canada FASD Research Network. Common mes-sages guidelines for talking and writing about FASD [Internet]. [cited 2018]. Available from: https://canfasd.ca/wp-content/uploads/2019/01/Common-Messages-FINAL-Dec-14-2018.pdf
35. Canada FASD Research Network. Language matters: Talking about fetal alcohol spectrum disorder (FASD) [Internet]. [cited 2019]. Available from: https://canfasd.ca/wp-content/uploads/2019/11/3-LanguageImages-Matter-5.pdf
2. Harpur P. From disability to ability: Changing the phrasing of the debate. Disabil Soc. 2012;27(3):325– 37. http://dx.doi.org/10.1080/09687599.2012.654985
3. Dunn DS, Andrews EE. Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. Am Psychol. 2015;70(3):255–64. http://dx.doi.org/10.1037/a0038636
4. Pelleboer-Gunnink HA, van Weeghel J, Embregts PJCM. Public stigmatisation of people with intellectual disabilities: A mixed-method population survey into stereotypes and their relationship with familiarity and discrimination. Disabil Rehabil. 2019;1–9. http://dx.doi.org/10.1080/09638288.2019.1630678
5. Rohmer O, Louvet E. Implicit stereotyping against people with disability. Gr Process Intergr Relations. 2018;21(1):127–40. http://dx.doi.org/10.1177/1368430216638536
6. Watermeyer B, Gorgens T. Disability and internalized oppression. In: David E, editor. Internalized oppression: The psychology of marginalized groups. New York, NY: Springer; 2014. pp. 251–73.
7. Sevak P, Khan S. Psychiatric versus physical disabilities: A comparison of barriers and facilitators to employment. Psychiatr Rehabil J. 2017;40(2):163–71. http://dx.doi.org/10.1037/prj0000236
8. Hammel J, Magasi S, Heinemann A, et al. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil. 2008;30:1445– 60. http://dx.doi.org/10.1080/09638280701625534
9. Hui D, De La Cruz M, Mori M, et al. Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks. Support Care Cancer. 2013;21(3):659–85. http://dx.doi.org/10.1007/s00520-012-1564-y
10. Hui D, Mori M, Parsons HA, et al. The lack of standard definitions in the supportive and palliative oncology literature. J Pain Sympt Manag. 2012;43(3):582–92. http://dx.doi.org/10.1016/j.jpainsymman.2011.04.016
11. Rutherford MA. Standardized nursing language: What does it mean for nursing practice? Online J Issues Nurs. 2008;13(1):1–7.
12. Hicks KA, Mahaffey KW, Mehran R, et al. Cardiovascular and stroke endpoint definitions for clinical trials. Circulation. 2018;137(9):961–72. http://dx.doi.org/10.1161/CIRCULATIONAHA.117.033502
13. Chiong W. Diagnosing and defining disease. J Am Med Assoc. 2001;285(1):89–90. http://dx.doi.org/10.1001/jama.285.1.89-JMS0103-2-1
14. McColl MA, Jaiswal A, Jones S, et al. A review of disability policy in Canada [Internet]. [cited 2017]. Kingston, ON: Canadian Disability Policy Alliance (CDPA). Available from: http:// www.disabilitypolicyalliance.ca/wp-content/
uploads/2018/01/A-Review-of-Disability-Poli-cy-in-Canada-3rd-edition-Final-1-1.pdf
15. Kozey M, Siegel LS. Definitions of learning disabilities in Canadian provinces and territories. Can Psychol. 2008;49(2):162–71. http://dx.doi.org/10.1037/0708-5591.49.2.162
16. Harrison A, Holmes A. Easier said than done: Operationalizing the diagnosis of learning disability for use at the postsecondary level in Canada. Can J Sch Psychol. 2012;27(1):12–34. http://dx.doi.org/10.1177/0829573512437021
17. Dionne CE, Dunn KM, Croft PR, et al. A consensus approach toward the standardization of back pain definitions for use in prevalence studies. Spine (Phila Pa 1976). 2008;33(1):95–103. http://dx.doi.org/10.1097/BRS.0b013e31815e7f94
18. Mills RJ, Young CA. A medical definition of fatigue in multiple sclerosis. Quart J Med (QJM). 2008;101(1):49–60. http://dx.doi.org/10.1093/qjmed/ hcm122
19. Chan LS, Razzaque Ahmed A, Anhalt GJ, et al. The first international consensus on mucous mem-brane pemphigoid: Definition, diagnostic criteria, pathogenic factors, medical treatment and prognos-tic indicators. Arch Dermatol. 2002;138(3):370–9. http://dx.doi.org/10.1001/archderm.138.3.370
20. Flannigan K, Harding K, Reid D. Strengths among individuals with FASD [Internet]. [cited 2018]. Available from: https://canfasd.ca/wp-content/uploads/publications/Strengths-Among-Individuals-with-FASD.pdf
21. Jones KL, Smith DW, Ulleland CN, et al. Pattern of malformation in offspring of chronic alcoholic mothers. Lancet. 1973;301(7815):1267–71. http://dx.doi.org/10.1016/S0140-6736(73)91291-9
22. Stratton K, Howe C, Battaglia FC. Fetal alcohol syndrome: Diagnosis, epidemiology, prevention, clinical trials. Circulation. 2018;137(9):961–72. http://dx.doi.org/10.1161/CIRCULATIONAHA.117.033502
13. Chiong W. Diagnosing and defining disease. J Am Med Assoc. 2001;285(1):89–90. http://dx.doi.org/10.1001/jama.285.1.89-JMS0103-2-1
14. McColl MA, Jaiswal A, Jones S, et al. A review of disability policy in Canada [Internet]. [cited 2017]. Kingston, ON: Canadian Disability Policy Alliance (CDPA). Available from: http://www.disabilitypolicyalliance.ca/wp-content/uploads/2018/01/A-Review-of-Disability-Poli-cy-in-Canada-3rd-edition-Final-1-1.pdf
15. Kozey M, Siegel LS. Definitions of learning dis-abilities in Canadian provinces and territories. Can Psychol. 2008;49(2):162–71. http://dx.doi.org/10.1037/0708-5591.49.2.162
16. Harrison A, Holmes A. Easier said than done: Operationalizing the diagnosis of learning disability for use at the postsecondary level in Canada. Can J Sch Psychol. 2012;27(1):12–34. http://dx.doi.org/10.1177/0829573512437021
17. Dionne CE, Dunn KM, Croft PR, et al. A consensus approach toward the standardization of back pain definitions for use in prevalence studies. Spine (Phila Pa 1976). 2008;33(1):95–103. http://dx.doi.org/10.1097/BRS.0b013e31815e7f94
18. Mills RJ, Young CA. A medical definition of fatigue in multiple sclerosis. Quart J Med (QJM). 2008;101(1):49–60. http://dx.doi.org/10.1093/qjmed/hcm122
19. Chan LS, Razzaque Ahmed A, Anhalt GJ, et al. The first international consensus on mucous membrane pemphigoid: Definition, diagnostic criteria, pathogenic factors, medical treatment and prognostic indicators. Arch Dermatol. 2002;138(3):370–9. http://dx.doi.org/10.1001/archderm.138.3.370
20. Flannigan K, Harding K, Reid D. Strengths among individuals with FASD [Internet]. [cited 2018]. Available from: https://canfasd.ca/wp-content/uploads/ publications/Strengths-Among-Individuals-with-FASD.pdf
21. Jones KL, Smith DW, Ulleland CN, et al. Pattern of malformation in offspring of chronic alcoholic mothers. Lancet. 1973;301(7815):1267–71. http://dx.doi.org/10.1016/S0140-6736(73)91291-9
22. Stratton K, Howe C, Battaglia FC. Fetal alcohol syndrome: Diagnosis, epidemiology, prevention, and treatment. Washington, DC: National Academy Press; 1996.
23. Astley SJ, Clarren SK. Diagnostic guide for fetal alcohol syndrome and related conditions: The 4-digit diagnostic code. Seattle, WA: University of Washington; 1997.
24. Hoyme HE, Coles CD. Alcohol-related neurobehavioral disabilities: Need for further definition and com-mon terminology. Pediatrics. 2016;138(4):e20161999. http://dx.doi.org/10.1542/peds.2016-1999
25. Chudley AE, Conry J, Cook JL, et al. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Can Med Ass J (CMAJ). 2005;172(5 Suppl.):S1–21. http://dx.doi.org/10.1503/cmaj.1040302
26. Cook JL, Green CR, Lilley CM, et al. Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan. Can Med Ass J (CMAJ). 2015;188(3): 191–7. http://dx.doi.org/10.1503/cmaj.141593
27. Choate P, Badry D. Stigma as a dominant discourse in fetal alcohol spectrum disorder. Adv Dual Diagn. 2019;12(1–2):36–52. http://dx.doi.org/10.1108/ADD-05-2018-0005
28. Choate P, Badry D, MacLaurin B, et al. Fetal alcohol spectrum disorder: What does public awareness tell us about prevention programming? Int J Environ Res Public Health. 2019;16(21):4229. http://dx.doi.org/10.3390/ijerph16214229
29. Morrison K, Harding K, Wolfson L. Individuals with fetal alcohol spectrum disorder and experiences of stigma [Internet]. [cited 2019]. Available from: https://canfasd.ca/wp-content/ uploads/publications/Individuals-with-FASD-and-Experiences-of-Stigma-FINAL.pdf
30. Bell E, Andrew G, Chudley AE, et al. It’s a shame! Stigma against fetal alcohol spectrum disorder: Examining the ethical implications for public health practices and policies. Public Health Ethics. 2016;9(1):65–77. http://dx.doi.org/10.1093/phe/phv012
31. Jones KL, Streissguth AP. Fetal alcohol syndrome and fetal alcohol spectrum disorders: A brief his-tory. J Psych Law. 2010;38:373–82. http://dx.doi.org/10.1177/009318531003800402
32. Agency for Healthcare Research and Quality. Communication and dissemination strategies to facilitate the use of health and health care evidence [Internet]. [cited 2012]. Available from: www.effectivehealthcare.ahrq.gov
33. Davidson B. Storytelling and evidence-based policy: Lessons from the grey literature. Palgrave Commun. 2017;3(1):1–10. http://dx.doi.org/10.1057/palcomms.2017.93
34. Canada FASD Research Network. Common mes-sages guidelines for talking and writing about FASD [Internet]. [cited 2018]. Available from: https://canfasd.ca/wp-content/uploads/2019/01/Common-Messages-FINAL-Dec-14-2018.pdf
35. Canada FASD Research Network. Language matters: Talking about fetal alcohol spectrum disorder (FASD) [Internet]. [cited 2019]. Available from: https://canfasd.ca/wp-content/uploads/2019/11/3-LanguageImages-Matter-5.pdf