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ABSTRACT
This article analyzes convergences in the ways that both deafness and autism are framed as crises that require immediate (and often expensive) professional intervention. Parents receive messages that failure to therapeutically intervene will prevent their children from living normative lives. We demonstrate how therapy techniques such as Auditory Verbal Therapy and Applied Behavioral Analysis have proliferated to address these crises. We explore the development of professional organizations and training programs devoted to AVT and ABA and we consider how AVT and ABA professionals define “optimal outcomes” that are supposedly achieved when diagnosis is removed or declassified. In contrast to professional views, we argue for alternative perceptions of these therapeutic processes and their ostensible outcomes based on accounts by d/Deaf and Autistic adults. In addition, we argue that the (neutral) language of outcomes obscures the active work required and backgrounds the different kinds of labor and ideologies at play. While AVT and ABA experts argue that it is increasingly possible to achieve optimal outcomes, we question the sensory and relational costs of these outcomes and the way that they prevent other ways of being, sensing, and communicating from taking place.
Acknowledgement
Michele Friedner wishes to thank all of her d/Deaf interlocutors, particularly the families that spent time with her and let her observe their therapy sessions and AVT therapists for engaging her many questions. She also wishes to thank Micere Keels and Marisa Casillas for thoughts on outcomes. Pamela Block wishes to thank Western University Graduate Students Khadeeja Farooq and Holly Deckert for their help with proofreading and references for this document. She is also grateful for discussions with Sara Acevedo, Hope Block, Patty Douglas, Ibby Grace, Julie Gruson-Wood, Estee Klaar, Robin Roscigno, Rua M. Williams, Adam Wolfond and Remi Yergeau, which helped her to better understand the experiences of autistic people with ABA and other clinical interventions.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Notes
1. We see the categories of deaf and autistic as doing diagnostic, identity, and political work and we recognize the fraught relationships between diagnosis and the identity- and world- making that it enables (Friedner Citation2010). We follow the work of d/Deaf and a/Autistic scholars and activists in our writing although we do not capitalize deaf or autistic unless we are writing specifically about people who themselves use such conventions to write about themselves or others.
2. See Venkat (Citation2021) on the undoing of cures and the pursuit of cure as a never-ending process. Outcomes might function similarly to cures.
3. Optimal outcome talk is also a means of critiquing another person or therapeutic approach. For example, Michele often heard therapists critique other therapists by saying: “They do not get good outcomes in children.
4. We note that practices outside of metro areas might vary widely and we wish we had data from more rural areas. Michele has been particularly interested in researching therapy techniques that might be considered “indigenous” to India, although all of the therapists with whom Michele spoke, again in metro areas, had stories of trainings and workshops officiated over by international trainers, typically from the US, UK, or Australia.
5. WHO (Citation2021).
6. This way of explaining the importance of early intervention is globalized and is identical at Alexander Graham Bell Association international meetings and at the Cochlear Implant Group of India’s annual meetings, which often feature speakers who are “international experts” who work for cochlear implant manufacturers or whose trips might be paid for by manufacturers. Depending on class and education background of families, therapists might not talk about children’s brains as they say that talk about the brain can be “too abstract” or “not visible.” Therapists might instead talk about “hearing problems.”
7. CDC (Citation2020).
8. https://www.hrw.org/news/2021/08/26/inclusive-education-risk-brazil, https://www.camarainclusao.com.br/noticias/entidades-enviam-carta-para-revogacao-de-protocolo-que-cita-eletroconvulsoterapia-para-tratamento-de-autismo/, https://docs.google.com/forms/d/e/1FAIpQLSdr0S8oXo-XI2baqyC4G7vnxikg9rXuTO2JlnkXrwI7D6HjvA/viewform.
10. These notecards and others referred to are held in the Helen Hulick Beebe Papers, Penn State University Archives, Eberly Family Special Collections Library, Penn State University Libraries.
11. A prominent AVT practitioner and expert trainer in the US told Michele that the AG Bell Academy renamed and rebranded AVT as “listening and spoken language” because AVT had a negative reputation, owing to the actions of AVT practitioners who have “holier than thou” attitudes and have been known to berate other practitioners for not using AVT. “Listening and spoken language” is seen as more politically and ideologically neutral than AVT.
12. AG Bell Academy, “Principles of Certified LSLS Auditory-Verbal Therapists (LSLS Cert. AVT https://www.agbell.org/Families/Communication-Options).”
13. Writing about cochlear implants, Tamati, Pisoni, and Moberly (Citation2022, 300) note that there is enormous variability and individual differences in speech and language outcomes in deaf adults and children who have received implants and they argue that “understanding individual differences in outcomes and specific challenges for adults and children with CIs is critical for developing new methods to identify individuals who may be at high risk for poor outcomes as early as possible, in order to use novel targeted interventions to help them achieve optimal levels of performance and benefits with their CIs.” They point out (ibid, 306): “The lack of preimplantation predictors of outcomes presents a challenge for clinicians to identify those children who may be at high risk for poor outcomes at a time when interventions could be made to improve their language skills.” What is interesting is that despite significant research into indicators of outcomes as well as attempts to understand variability and difference, there is still an inability to “predict” outcomes and there is always uncertainty – thus cofounding so-called expert proclamations about the inevitability of optimal outcomes.
14. Currently there are 112,264 BACB certificants globally (37,859 BCBAs, 4,044 BCaBAs, and 70,361 RBTs), yet 94.4% reside in the United States, (IBCCES Citation2020).
15. Broderick and Roscigno (Citation2021) call the proliferation of ABA and other mechanisms to manage autism as the “Autism Industrial Complex” (AIC).
16. Gruson-Wood (Citation2016) describes how techniques for training ABA practitioners in some ways mirror the practice of ABA on autistic children, complete with strategies of surveillance and repetition to ensure ABA therapists “learn to relate to themselves as malleable instruments, who through objective, authoritative and compliant conduct, are able to engineer targeted therapeutic outcomes” (44).
17. This is an important critique that many autistic scholars have identified as a key difference between ABA and other interventions – the aggressive branding and marketing of ABA which seeks to extinguish not just unwanted behaviors, but unwanted competition in the lucrative market of autistic treatment.
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Notes on contributors
Michele Friedner
Michele Friedner is a medical anthropologist and an associate professor in the Department of Comparative Human Development at the University of Chicago.
Pamela Block
Pamela Block is a sociocultural anthropologist and a professor of Anthropology at Western University.