Abstract
Although applied behavior analysis (ABA) is a science committed to improving the lives of others in socially meaningful ways, it exists within complex structures of power that are at odds with the values of our science. Current research practices perpetuate the oppression of people with disabilities. For too long ABA researchers have disproportionately conducted research with people with disabilities without their input. It is time for a paradigmatic change toward more compassionate and participant-centered research practices. In this article, we (1) highlight the concerns with current research practices and how ABA may perpetuate ableism; (2) provide suggestions for more compassionate, participant-centered research using two applied research studies to illustrate compassionate research in action; and (3) point to systems-level changes that we believe will disrupt oppressive and ableist research practices.
Similar content being viewed by others
Data Availability
Data sharing not applicable to this article because no datasets were generated or analyzed during the current study.
Tajma Hodzic was a student and thesis advisee of Jamine Dettmering until December 2020.
Notes
The authors use person-first and identity-first language interchangeably in this article.
References
Academic Autism Spectrum Partnership in Research & Education. (n.d.). About. https://aaspire.org/about/
American Counseling Association. (2014). 2014 ACA code of ethics. https://www.counseling.org/docs/default-source/default-document-library/2014-code-of-ethics-finaladdress.pdf
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
Anderson, L. K. (2022). Autistic experiences of applied behavior analysis. Autism: The International Journal of Research & Practice, 27(3), 737–750. https://doi.org/10.1177/13623613221118216
Association for Behavior Analysis International. (2018). Association for Behavior Analysis International verified course sequence handbook. https://www.abainternational.org/media/155079/abai_vcs_handbook_2018.pdf
Autism in Adulthood. (2023). Manuscript submission guidelines & policies. Mary Ann Liebert https://home.liebertpub.com/publications/646/pdf
Autistictic. (2018, November 20) Independence vs. autonomy. https://Autistictic.com/2018/11/20/independence-vs-autonomy/
Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimension of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91–97. https://doi.org/10.1901/jaba.1968.1-9
Barkoff, A. (2023, March 31). Beyond the conversation: Putting “Nothing About Us Without Us” into action. Administration for Community Living. https://acl.gov/news-and-events/acl-blog/beyond-conversation-putting-nothing-about-us-without-us-action#:~:text=Judy%20championed%20so%20many%20of,what%20DDAM%20is%20all%20about
Behavior Analyst Certification Board. (n.d.). BACB certificant data. https://www.bacb.com/BACB-certificant-data
Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. https://bacb.com/wp-content/ethics-code-for-behavior-analysts/
Bottema-Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. G. (2020). Adverse event reporting in intervention research for young Autistic children. Autism: The International Journal of Research and Practice, 25(2), 322–335. https://doi.org/10.1177/1362361320965331
Bottema-Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. (2020). Research review: Conflicts of Interest (COIs) in autism early intervention research—A meta-analysis of COI influences on intervention effects. Journal of Child Psychology & Psychiatry, 62(1), 5–15. https://doi.org/10.1111/jcpp.13249
Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18–29. https://doi.org/10.1089/aut.2020.0014
Broderick, A. A. (2009). Autism, “recovery (to normalcy)”, and the politics of hope. Intellectual & Developmental Disabilities, 47(4), 263–281.
Broderick, A. A. (2022). The Autism Industrial Complex: How branding, marketing, and capital investment turned autism into big business. Myers Education Press.
Broderick, A. A., & Roscigno, R. (2021). Autism Inc: The autism industrial complex. Journal of Disability Studies in Education., 2, 1–25. https://doi.org/10.1163/25888803-bja10008
Capriotti, M. (2022). Getting unstuck: How behavior analysts can talk to marginalized communities, behave flexibly, and change the world [Paper Presentation]. Association for Behavior Analysis International.
Cassidy, S. A., Gould, K., Townsend, E., Pelton, M., Robertson, A. E., & Rodgers, J. (2020). Is camouflaging Autistic traits associated with suicidal thoughts and behaviours? Expanding the interpersonal psychological theory of suicide in an undergraduate student sample. Journal of Autism & Developmental Disorders, 50(10), 3638–3648. https://doi.org/10.1007/s10803-019-04323-3
Centers for Disease Control & Prevention. (n.d.). Childhood maltreatment among children with disabilities. https://www.cdc.gov/ncbddd/disabilityandsafety/abuse.html
Charlton, J. I. (2000). Nothing about us without us: Disability oppression and empowerment. University of California Press.
Child Welfare Information Gateway. (2021). Child welfare practice to address racial disproportionality and disparity. https://www.childwelfare.gov/pubPDFs/racial_disproportionality.pdf
Cooper, J., Heron, T. E., & Heward, W. L. (2020). Applied behavior analysis (3rd ed.). Pearson Education.
Crenshaw, K. (2016). The urgency of intersectionality [Video]. TED Women https://www.ted.com/talks/kimberle_crenshaw_the_urgency_of_intersectionality?language=en
Critchfield, T. S., Doepke, K. J., Kimberly Epting, L., Becirevic, A., Reed, D. D., Fienup, D. M., Kremsreiter, J. L., & Ecott, C. L. (2017). Normative emotional responses to behavior analysis jargon or how not to use words to win friends and influence people. Behavior Analysis in Practice, 10(2), 97–106. https://doi.org/10.1007/s40617-016-0161-9
Dettmering, J. (2021, May 27–31). ABA is a science: So what? In D. Walker (chair), Diversity in behavior analysis: Cultural competence, neurodiversity, ableism, and practicing what we should be preaching. [Symposium]. Association for Behavior Analysis International, Online.
Fawcett, S. B. (1991). Some values guiding community research and action. Journal of Applied Behavior Analysis, 24(4), 621–636. https://doi.org/10.1901/jaba.1991.24-621
Fawcett, S. B., Schultz, J., Collie-Akers, V., Holt, C., & Watson-Thompson, J. (2016). Community development for population health and health equity. In P. Erwin & R. Brownson (Eds.), Scutchfeld and Keck’s principles of public health practice (4th ed., pp. 443–460). Cengage Learning.
Federal Policy for the Protection of Human Subjects. (2018). Authentic U.S. Government Information GPO. Federal Register https://www.ecfr.gov/cgi-bin/retrieveECFR?gp=&SID=83cd09e1c0f5c6937cd9d75.13160fc3f&pitd=20180719&n=pt45.1.46&r=PART&ty=HTML
Ferguson, J. L., Cihon, J. H., Leaf, J. B., Van Meter, S. M., McEachin, J., & Leaf, R. (2019). Assessment of social validity trends in the journal of applied behavior analysis. European Journal of Behavior Analysis, 20(1), 145–157. https://doi.org/10.1080/15021149.2018.1534771
Fuld, S. (2018). Autism spectrum disorder: The impact of stressful and traumatic life events and implications for clinical practice. Clinical Social Work Journal, 46(3), 210–219.
Garland-Thomson, R. (2017). Disability bioethics: From theory to practice. Kennedy Institute of Ethics Journal, 27(2), 323–339. https://doi.org/10.1353/ken.2017.0020
Garner, J., Peal, A., Klapatch-Totsch, J., & Gamba, J. (2022). Exploitation, freedom, and coercion: The integration of applied behavior analysis in a capitalist system. Behavior & Social Issues, 31, 174–189. https://doi.org/10.1007/s42822-022-00100-7
Gheaus, A. (2017). Love and justice: A paradox? Canadian Journal of Philosophy, 47(6), 739–759. https://doi.org/10.1080/00455091.2017.1319656
Glenn, S. S. (2004). Individual behavior, culture, and social change. The Behavior Analyst, 27(2), 133–151.
Haney, C., Banks, W. C., & Zimbardo, P. G. (1973). Interpersonal dynamics in a simulated prison. International Journal of Criminology & Penology, 1, 69–97.
Hansen, H., & Trank, C. Q. (2016). This is going to hurt: Compassionate research methods. Organizational Research Methods, 19(3), 352–375.
Harris, N. B. (2018). The deepest well: Healing the long-term effects of childhood adversity. Houghton Mifflin Harcourt.
Johnston, J. M., & Pennypacker, H. S., Jr. (2009). Strategies and tactics of behavioral research (3rd ed.). Routledge/Taylor & Francis Group.
Jones, K., & Vance, T. (2021, October 19). Reframe your language, reframe your practice: Autonomous over independent. [Presentation]. Understanding Autism through the Actually Autistic Lens, Pennsylvania State University, Online.
Keenan, M., Dillenburger, K., Moderato, P., & Röttgers, H. R. (2010). Science for sale in a free market economy: But at what price? ABA and the treatment of autism in Europe. Behavior & Social Issues, 19(1), 126–143. https://doi.org/10.5210/bsi.v19i0.2879
Kelly, E. M., Greeny, K., Rosenberg, N., & Schwartz, I. (2021). When rules are not enough: Developing principles to guide ethical conduct. Behavior Analysis in Practice, 14, 491–498. https://doi.org/10.1007/s40617-020-00515-x
Kerns, C. M., Newschaffer, C. J., & Berkowitz, S. J. (2015). Traumatic childhood events and autism spectrum disorder. Journal of Autism & Developmental Disorders, 45(11), 3475–3486. https://doi.org/10.1007/s10803-015-2392-y
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in Autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19–29. https://doi.org/10.1108/AIA-08-2017-0016
Leaf, J. B., Ross, R. K., Cihon, J. H., & Weiss, M. J. (2018). Evaluating Kupferstein’s claims of the relationship of behavioral intervention to PTSS for individuals with autism. Advances in Autism, 4(3), 122–129. https://doi.org/10.1108/AIA-02-2018-0007
Leland, W., & Gross, B. (2022, January 29). Teaching consent: Building skills across the lifespan for giving and receiving an embodied “yes” [Conference Presentation]. SEXABA 2022 Conference, Online.
Lett, E., Asabor, E. N., Corbin, T., & Boatright, D. (2021). Racial inequity in fatal US police shootings, 2015–2020. Journal of Epidemiology & Community Health, 75(4), 394–397. https://doi.org/10.1136/jech-2020-215097
Levy, S., Siebold, A., Vaidya, J., Truchon, M., Dettmering, J., & Mittelman, C. (2021). A look in the mirror: How the field of behavior analysis can become anti-racist. Behavior Analysis in Practice, 15(4), 1–14. https://doi.org/10.1007/s40617-021-00630-3
Lilius, J. M., Worline, M. C., Maitlis, S., Kanov, J. M., Dutton, J. E., & Frost, P. (2008). The contours and consequences of compassion at work. Journal of Organizational Behavior, 29(2), 193–218.
Malott, R. W. (2002). Notes from a radical behaviorist: Is it morally defensible to use the developmentally disabled as guinea pigs? Behavior & Social Issues, 11, 105–106. https://doi.org/10.5210/bsi.v11i2.90
McDonald, K. E. (2017). On the right side of history: Community-based participatory research and people with developmental disabilities. Current Developmental Disorders Reports, 4(1), 11–13. https://doi.org/10.1007/s40474-017-0104-3
Milgram, S. (1963). Behavioral study of obedience. Journal of Abnormal & Social Psychology, 67, 371–378.
Miller, K. L., Cruz, A. R., & Ala’i-Rosales S. (2019). Inherent tensions and possibilities: Behavior analysis and cultural responsiveness. Behavior & Social Issues, 28(1), 203. https://doi.org/10.1007/s42822-019-00013-y
Miserandino, C. (2017). The spoon theory. But You Don’t Look Sick? https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Morgan, C. (Host). (2022). Racism within the Anti-ABA movement [Audio podcast episode]. In Love, sex, and applied behavior analysis. https://open.spotify.com/episode/3tiF88WbJeb3lBH8IsiGzL
Morris, C., Detrick, J. J., & Peterson, S. M. (2021). Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities. Journal of Applied Behavior Analysis, 54(4), 1300–1316. https://doi.org/10.1002/jaba.859
National Commission for the Protection of Human Subjects of Biomedical & Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health & Human Services.
Ne’eman, A. (2010). The future (and the past) of autism advocacy, or why the ASA’s magazine, The Advocate, wouldn’t publish this piece. Disability Studies Quarterly, 30(1). https://dsq-sds.org/article/view/1059/1244
Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Ashkenazy, E., Boisclair, C., Robertson, S., & Baggs, A. (2011). Collaboration strategies in nontraditional community-based participatory research partnerships: Lessons from an academic–community partnership with Autistic self-advocates. Progress in Community Health Partnerships, 5(2), 143–150.
Office of Special Education Programs. (2022). OSEP Fast Facts: Educational environments of school aged children with disabilities. Individuals with Disabilities Education Act https://sites.ed.gov/idea/osep-fast-facts-educational-environments-school-aged-children-disabilities/
Parens, E. (2017). Choosing flourishing: Toward a more “Binocular” way of thinking about disability. Kennedy Institute of Ethics Journal, 27(2), 135–150. https://doi.org/10.1353/ken.2017.0013
Planned Parenthood. (n.d.). What is sexual consent?: Facts about rape & sexual assault. https://www.plannedparenthood.org/learn/relationships/sexual-consent
Pritchett, M., Ala’i-Rosales, S., Cruz, A. R., & Cihon, T. M. (2021). Social justice is the spirit and aim of an applied science of human behavior: Moving from colonial to participatory research practices. Behavior Analysis in Practice, 15(4), 1–19. https://doi.org/10.1007/s40617-021-00591-7
Rekers, G. A., & Lovaas, O. I. (1974). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7(2), 173–190.
Reynolds, J. M. (2016). The ableism of quality of life judgments in disorders of consciousness: Who bears epistemic responsibility? AJOB Neuroscience, 7(1), 59–61.
Reynolds, J. M. (2017). “I’d rather be dead than disabled”—The ableist conflation and the meanings of disability. Review of Communication, 17(3), 149–163. https://doi.org/10.1080/15358593.2017.1331255
Reynolds, J. M. (2018). Three things clinicians should know about disability. AMA Journal of Ethics, 20(12), E1181-1187. https://doi.org/10.1001/amajethics.2018.1181
Russo, F. (2018). The costs of camouflaging autism. Spectrum https://www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/
Sandoz, E., Louisiana Contextual Science Research Group. (2021). Beyond “Yes Means Yes”: A behavioral conceptualization of affirmative sexual consent. Behavior & Social Issues, 30(1), 712–731. https://doi.org/10.1007/s42822-021-00066-y
Schalock, R. L., Bonham, G. S., & Verdugo, M. A. (2008). The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities. Evaluation & Program Planning, 31(2), 181–190. https://doi.org/10.1016/j.evalprogplan.2008.02.001
Schwartz, I. S., & Kelly, E. M. (2021). Quality of life for people with disabilities: Why applied behavior analysts should consider this a primary dependent variable. Research & Practice for Persons with Severe Disabilities, 46(3), 159–172. https://doi.org/10.1177/15407969211033629
Shkedy, G., Shkedy, D., & Sandoval-Norton, A. H. (2021). Long-term ABA therapy is abusive: A response to Gorycki, Ruppel, and Zane. Advances in Neurodevelopmental Disorders, 5(2), 126–134.
Shyman, E. (2016). The reinforcement of ableism: Normality, the medical model of disability, and humanism in applied behavior analysis and ASD. Intellectual & Developmental Disabilities, 54(5), 366–376. https://doi.org/10.1352/1934-9556-54.5.366
Skinner, B. F. (1956). A case history in scientific method. American Psychologist, 11(5), 221–233. https://doi.org/10.1037/h0047662
Slocum, T. A., Detrich, R., Wilczynski, S. M., Spencer, T. D., Lewis, T., & Wolfe, K. (2014). The evidence-based practice of applied behavior analysis. Behavior Analyst, 37(1), 41–56. https://doi.org/10.1007/s40614-014-0005-2
Snodgrass, M. R., Chung, M. Y., Kretzer, J. M., & Biggs, E. E. (2022). Rigorous assessment of social validity: A scoping review of a 40-year conversation. Remedial & Special Education, 43(2), 114–130. https://doi.org/10.1177/07419325211017295
Stewart, R. (n.d.). Should we insist on eye contact with people who have autism spectrum disorders. Indiana Resource Center for Autism. https://www.iidc.indiana.edu/irca/articles/should-we-insist-on-eye-contact-with-people-who-have-autism-spectrum-disorders.html
Talbot, P., Astbury, G., & Mason, T. (Eds.). (2010). Key concepts in learning disabilities. Sage. https://doi.org/10.4135/9781446251645
Taylor, B. A., LeBlanc, L. A., & Nosik, M. R. (2018). Compassionate care in behavior analytic treatment: Can outcomes be enhanced by attending to relationships with caregivers? Behavior Analysis in Practice, 12(3), 654–666. https://doi.org/10.1007/s40617-018-00289-3
Tervalon, M., & Murray-García, J. (1998). Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education. Journal of Health Care for the Poor & Underserved, 9(2), 117–125. https://doi.org/10.1353/hpu.2020.0233
Tudor, M. (1939). An experimental study of the effect of evaluative labeling on speech fluency [University of Iowa]. https://doi.org/10.17077/etd.9z9lxfgn
Tuskegee University. (n.d.). About the USPHS syphilis study. https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-usphs-syphilis-study
Vyse, S. (2022). Autism politics and the death of truth and freedom. Skeptical Inquirer https://skepticalinquirer.org/exclusive/autism-politics-and-the-death-of-truth-and-freedom/
Watson, J. B., & Rayner, R. (1920). Conditioned emotional reactions. Journal of Experimental Psychology, 3(1), 1.
Watson-Thompson, J., Francisco, V. T., & Anderson-Carpenter, K. D. (2020). A behavioral community approach to community health and development: Tools for collaborative action. In T. M. Cihon & M. A. Mattaini (Eds.), Behavior science perspectives on culture and community (pp. 333–356). Springer.
Wolf, M. M. (1978). Social validity: The case for subjective measurement or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11(2), 203–214. https://doi.org/10.1901/jaba.1978.11-203
Wong-Baker FACES Foundation (2022). Wong-Baker FACES® Pain Rating Scale. http://www.WongBakerFACES.org.
World Health Organization. (2012). Quality of life: Measuring quality of life. https://www.who.int/tools/whoqol
Acknowledgements
The authors acknowledge the following people for their ongoing education and guidance on developing an anti-ableist, neurodiversity-affirming perspective: Madi Holcomb, Ashton Holt, Amy Bodkin, Worner Leland, Janani Vaidya, August Stockwell, Tiffany Hammond [@fidgets.and.fries], Terra Vance [NeuroClastic], Tiffany Joseph [@nigh.functioning.autism], and Oswin Latimer.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflicts of Interest
The authors have no financial conflicts of interest to disclose. The authors have no other conflicts of interest to disclose.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Dettmering, J., Hodzic, T. Avoiding Abuse of Power: A Case for Compassionate, Participant-Centered Research. Behav Analysis Practice (2024). https://doi.org/10.1007/s40617-024-00925-1
Accepted:
Published:
DOI: https://doi.org/10.1007/s40617-024-00925-1