At least two paragraphs summarizing the entirety of the readings.? For example, what is the main idea of the readings, when there are multiple chapters or articles, what ties them together?

Ethical Concerns with Applied Behavior Analysis for Autism

Spectrum “Disorder”

Daniel A. Wilkenfeld, Allison M. McCarthy

Kennedy Institute of Ethics Journal, Volume 30, Number 1, March 2020, pp. 31-69 (Article)

Published by Johns Hopkins University Press DOI: https://doi.org/10.1353/ken.2020.0000

For additional information about this article https://muse.jhu.edu/article/753840

[ Access provided at 22 Dec 2020 01:03 GMT from Chapman University ]

WILKENFELD AND McCARTHY • CONCERNS WITH BEHAVIOR ANALYSIS FOR AUTISM

Daniel A. Wilkenfeld and Allison M. McCarthy

Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”

ABSTRACT. This paper has both theoretical and practical ambitions. The theo- retical ambitions are to explore what would constitute both effective and ethical treatment of Autism Spectrum Disorder (ASD). However, the practical ambition is perhaps more important: we argue that a dominant form of Applied Behavior Analysis (ABA), which is widely taken to be far-and-away the best “treatment” for ASD, manifests systematic violations of the fundamental tenets of bioethics. Moreover, the supposed benefts of the treatment not only fail to mitigate these violations, but often exacerbate them. Warnings of the perils of ABA are not origi- nal to us—autism advocates have been ringing this bell for some years. However, their pleas have been largely unheeded, and ABA continues to be offered to and quite frequently pushed upon parents as the appropriate treatment for autistic children. Our contribution is to argue that, from a bioethical perspective, autism advocates are fully justifed in their concerns—the rights of autistic children and their parents are being regularly infringed upon. Specifcally, we will argue that employing ABA violates the principles of justice and nonmalefcence and, most critically, infringes on the autonomy of children and (when pushed aggressively) of parents as well.

§1 INTRODUCTION

This paper has both theoretical and practical ambitions. The theoreti- cal ambitions are to explore what would constitute both effective and ethical treatment of Autism Spectrum Disorder (ASD).1 How-

ever, the practical ambition is perhaps more important: we argue that a dominant form of Applied Behavior Analysis (ABA), which is widely taken to be far-and-away the best “treatment”2 for ASD, manifests systematic violations of the fundamental tenets of bioethics. Moreover, the supposed benefts of the treatment not only fail to mitigate these violations, but they

Kennedy Institute of Ethics Journal Vol. 30, No. 1, 31–69 © 2020 by Johns Hopkins University Press

[ 31 ]

KENNEDY INSTITUTE OF ETHICS JOURNAL • MARCH 2020

often exacerbate them. Warnings of the perils of ABA are not original to us—autism advocates (e.g., Devita-Raeburn 2016; Sparrow 2016) have been ringing this bell for some years.3 However, their pleas have been largely unheeded, and ABA continues to be offered to and quite frequently pushed upon (see §3.3) parents as the appropriate treatment for autistic children.4 Our contribution is to argue that, from a bioethical perspective, autism advocates are fully justifed in their concerns—the rights of autistic children5 and their parents are being regularly infringed upon. Specifcally, we will argue that employing ABA violates the principles of justice and nonmalefcence and, most critically, infringes on the autonomy of children and (when pushed aggressively) of parents as well.6

There are several approaches one could take to this project. One could look at an analysis of ABA from the perspective of disability studies and immediately note that it is problematic to “treat” patients for thinking differently (see Amundson 2000 for classic arguments of this form regarding disability generally). We think this is an important approach, but we do think that it is limited in effectively reaching as wide an audience as possible. We thus assume a more traditional bioethical framework that stays silent on the status of disabilities generally, and we argue that even under these assumptions ABA should be problematic to the community at large. Furthermore, for purposes of this argument, we assume that ABA achieves its intended behavioral targets (see §1.3.1 below). We think this is probably correct (see Makrygianni et al. 2018 for a defense of the claim that ABA successfully meets its behavioral goals); however, adjudicating that question—while still of vital importance—would involve a project more empirical than bioethical. We take one of the strengths of this paper to fll a void7 in the anti-ABA arguments from a more broadly accepted bioethical standpoint.

The question of the ethicality of ABA is of critical societal importance. As is common knowledge, ASD affects a large percentage of the population. In the United States in 2018 (the most recent year for which the Center for Disease Control has available data), 1 in 59 children was identifed with ASD, up from 1 in 150 in 2000 (CDC 2018). ABA is often referred to as the “gold standard” of care for ASD (see e.g., “California Autism Center”), and is the offcially (and glowingly) endorsed treatment of the operative document from the US Surgeon General (National Institute of Health 1999).8 If we are correct that the use of ABA at least frequently violates the standard principles of bioethics, then this has massive implications for healthcare and society generally.

[ 32 ]

WILKENFELD AND McCARTHY • CONCERNS WITH BEHAVIOR ANALYSIS FOR AUTISM

Here is the overall structure of the argument. In §1.1, we introduce a (semi-)hypothetical autistic child. In §1.2 we will grant for the sake of argument that ASD is a disability, and even that it is a disability that can be circumscribed and individuated. In §1.3 we will give a description of ABA. In §2 we lay the groundwork for our ultimate argument, stressing that children have autonomy-related interests that are deserving of moral respect and consideration. §3 will put forward our central argument for the claim that treatment with ABA regularly violates the norms of medical ethics, which is that it inherently violates children’s autonomy- related interests (and that as it is promoted in practice it is detrimental to parents’ autonomy as well). As a framing device, we will take as given that gay conversion therapy is unethical and argue that ABA is coercive in a remarkably similar way.9 In §4 and §5 we argue that in practice the employment of ABA also manifests a violation of justice and nonmalefcence (respectively). In §6 we look at objections, of which the most prominent is that ABA is ethical because “it works”; we will consider this as an argument from the bioethical principle of benefcence (that everything should be done to beneft patients). We will also explore the reply that our argument proves too much, in that if valid it would demonstrate that any parenting behavior geared at altering the behavior of children was unethical. We discuss in §7 one exception to our general claim and briefy conclude in §8.

Put briefy, the argument is that ABA is—among other things—an encroachment on the autonomy of children forced to receive it. Even granting that parents have the authority to decide in favor of ABA, doing so runs two very serious risks. First, it can alter children’s identities by preventing them from forming and pursuing their own passions. Second— and more problematically—it can teach them that there is something wrong with who they are, teaching them how to blend in rather than exercise their own unique capacities.

§1.1 Patient X

There is a well-known saying in the autistic community that “if you know one person with autism, you know one person with autism.”10 As such, focusing on any one case can miss the broader picture.11 We will discuss a hypothetical patient, whose profle was constructed from various case reports but predominantly from personal experience. Consider autistic Patient X. X has trouble with language, obsesses over the outcome of every professional wrestling match, and eventually stops going to school because

[ 33 ]

KENNEDY INSTITUTE OF ETHICS JOURNAL • MARCH 2020

it regularly causes sensory overload. As an example of sensory overload, group meals are terrifying, because he cannot flter different threads of conversation or overlook the sound of people chewing. Patient X also self- stimulates (“stims”) by shaking his arms at many times throughout the day.

Clearly, one can sympathize with the parents’ desire to ameliorate these symptoms. Just as clearly though, not everything that could conceivably help would thereby be morally acceptable—to take an extreme example, physically beating X out of his interest in wrestling would, pretheoretically, violate ethical norms.

Patient X exhibits at least four different kinds of “targets” that are regularly nominated as candidates for treatment—with one exception discussed below, these symptoms seem to cover all the kinds of issues that one might want to treat with ABA. However, we argue that for none of them is ABA an ethical treatment.

What are the four different kinds of behaviors X exhibits that could be the targets of interventions?

1) Stim Target—one could attempt to treat X’s arm shaking. 2) Special Interest Target—one could attempt to treat X’s special interests,

for example by discouraging his watching professional wrestling. 3) Social Skill Target—one could attempt to target the suite of problems

making it diffcult for X to attend school. 4) Developmental Skill Target—one could attempt to target X’s basic

problems with language use.

In addition, there is one other potential target not present in X, but which can be found in people such as Patient Y. Y’s ASD is comorbid with pica syndrome, which is a condition where she regularly tries to eat non-food items.

5) Immediate Danger Target—one could attempt to treat a dangerous condition comorbid with ASD.

All of our arguments will address Targets (1) through (4). As a preview, we will claim that (1) through (3) pursue ethically questionable ends and that using ABA for any of the frst four employs ethically questionable means. We will return to discuss the Immediate Danger Target in §7.

§1.2 ASD as a Disability

For this paper, we will assume that ASD is a disability with individuation criteria that can roughly mark it off. If ASD is either not genuinely

[ 34 ]

WILKENFELD AND McCARTHY • CONCERNS WITH BEHAVIOR ANALYSIS FOR AUTISM

a condition (or one-dimensional spectrum) or is a condition but not a disability,12 then the arguments we are about to make become that much easier. We do not and should not authorize—much less strongly encourage—parents to enroll their children in treatments intended to “cure” introversion. It would be ethically outrageous to force children into 25–40 hours of therapy for being too shy. To make our case against the ethics of ABA, we will assume the strongest possible opposition. We thus grant for the sake of argument that there is a one-dimensional autism spectrum and that being on that spectrum genuinely does constitute a disability (in some sense) for one’s life. Nevertheless, we argue, treating autists with ABA is unethical, and using various levers (discussed below) to compel parents to utilize ABA is also extremely problematic.

§1.3 Applied Behavior Analysis

What is Applied Behavior Analysis? According to the Association of Professional Behavior Analysts, “the applied branch of [behavior analysis] (applied behavior analysis; ABA) involves using scientifc principles and procedures discovered through basic and applied research to improve socially signifcant behavior to a meaningful degree” (“About Behavior Analysis” n.d.). Our central argument will be that focusing only on patients’ (and particularly children’s) behaviors as are signifcant to society overruns their autonomy by encroaching on what is signifcant to them.

ABA is based on the science of operant conditioning (“What is reinforcement” n.d.). The central notion is that small behaviors that are rewarded (or punished) will be repeated (or inhibited), and that such small changes can eventually build to radically altered behavior patterns. The focus is exclusively on using incentives and disincentives to alter behavior, with the inner-workings of an individual treated as something of a black-box. While individual variants of ABA vary in how beholden they are to this behaviorist tradition, it is reasonably safe to say that operant conditioning and behaviorism are critical to ABA generally. The most well cited and respected form of ABA for autism (the “UCLA Model”) typically involves 40 hours of therapy a week for two years (Herbert & Brandsma 2002). Given the potential heterogeneity of treatments under the “ABA” heading and the unregimented use of the term, we will focus on variants of the UCLA Model, though any methodology based in behaviorist principles would face similar concerns.13

Modern manuals (e.g., Cooper, Heron, and Heward 2007) often implicitly (and frequently even explicitly) trace their theoretical

[ 35 ]

KENNEDY INSTITUTE OF ETHICS JOURNAL • MARCH 2020

underpinnings to a 1968 article by Baer, Wolf, and Risley. Baer, Wolf, and Risley (helpfully) characterize the method of Applied Behavior Analysis by explicating all three words in its designation.14 Of the three, one (‘analytic’) will prove relatively unproblematic, one (‘applied’) will be disquieting in its original formulation but relatively adaptable to a modern medical context, whereas the third (‘behavioral’) will exhibit a fundamental feature of ABA whose ethical diffculties pervade modern practice.

The “analysis” component of ABA is simply the best scientifc study of behavior. At times there seems something slightly sinister about even this element, as when the authors say that “an experimenter has achieved an analysis of a behavior when he can exercise control over it” (Baer, Wolf, and Risley 1968, 94). However, in reality the study of the causes of behavior is an entirely empirical question, and it does not by itself have any normative value or disvalue. (That said, which behaviors one chooses to study is itself a thoroughly normative question—researchers do not tend to study why neurotypicals don’t behave in certain ways.)15

Calling a therapy “applied” entails that it is designed to work in the real world, and whether it is effcacious depends on whether it achieves desired results of suffcient degree as to be useful (1968, 96). One obvious area of concern turns on what it means to “work” and from whom a result is desired. Baer, Wolf, and Risley are explicit that the behaviors are for the “better state of society” and what is “socially important” (1968, 91). Making decisions for patients for the sake of bettering society seems immediately suspicious from a modern perspective (see §4), as doing so places comparatively little emphasis on good of the patients themselves. We do not argue that ABA practitioners are in practice motivated by anything other than a sincere desire to help individual patients, but we do argue that the theoretical foundations of the discipline do not provide an immediate guide to what constitutes providing such help. Presumably a more modern reading would require that the therapy be conducive to the well-being of the patient while respecting their rights, and so this is in principle fxable. However, when we examine how ABA is employed in practice (see especially §5), we will see that much of it at least appears to have inherited its foundations’ interest in societal beneft at the expense of individual rights.16

Calling a therapy “behavioral” means that it involves what “subjects can be brought to do, rather than what they can be brought to say; unless, of course, a verbal response is the behavior of interest” (1968, 93). Note that while it explicitly discounts what patients say, the original work behind

[ 36 ]

WILKENFELD AND McCARTHY • CONCERNS WITH BEHAVIOR ANALYSIS FOR AUTISM

ABA literally did not even consider what patients thought. This was almost certainly due to their being beholden to Skinnerian behaviorism. (They cite Skinner 1953.) In §3 we will argue that therapy that merely modifes behavior while leaving the agent’s underlying motivational structure intact is a violation of autonomy, in that it coerces people to act against their identity. On the other horn of the dilemma, replacing the requirement of mere behavioral change with a more thoroughgoing transformation only leads to a violation of autonomy of a different kind, in that it forcibly interferes with children’s identity-formation process.

While we mostly have in mind the UCLA Model of ABA, for our purposes there are two problematic elements essential to any form of ABA. The frst is its exclusive emphasis on behavioral modifcation in lieu of more holistic, humanistic, or cognitive interventions. An ABA intervention will be considered a success if and only if it results in a desired behavior, regardless of what is going on in the mental life of the child. The second feature that problematizes ABA is that this is done in a way that overrides the child’s natural inclinations and does so via at least moderately coercive methods.17 To paraphrase one person with whom we spoke, if “ABA” just involved giving praise when the child does something good, you would be able to forgo years of training in favor of a lesson that could ft on a greeting card. There might be someone somewhere who practices ABA using only positive words of encouragement, but this is simply not what past recipients of ABA have reported (Kupferstein 2018).

When looking at actual therapeutic practices, it is easy to overlook these aspects of ABA because many therapists (rightly) use a wide array of approaches. Some such therapies—for example cognitive behavioral therapy (Drahota et al. 2011)—help the patient control their thought patterns (admittedly in addition to behavioral criteria). Our arguments against the ethicality of ABA will not touch on these other methods, even though they are often practiced together.

What would ABA look like for patient X? It would typically involve 25– 40 hours per week of intense one-on-one therapies. X would be rewarded for engaging in activities that make him more “normal.” For example, X might receive food and treats for speaking clearly and sitting pleasantly at meals with other children or family members. There would also be efforts to wean X off of unapproved behaviors. X might have discomfort removed—for example by being given a drink of water to alleviate his thirst (Ryan 2013)—for focusing on activities other than professional wrestling or for fnding less distracting ways of calming himself down.

[ 37 ]

KENNEDY INSTITUTE OF ETHICS JOURNAL • MARCH 2020

There are two points we would like to fag about this treatment aside from the behaviorist aspects that will be our primary focus. The frst is the sheer time and effort to do it well—every hour spent in ABA is an hour X cannot spend playing in an unstructured setting, being read to, etc. The second point is that in reality, ABA sometimes uses so-called “aversives” (see §5) i.e., punishment. Almost invariably (AnxiousAdvocate 2015),18 ABA uses some form of negative reinforcement, wherein a child’s intense discomfort is only removed if they perform as they are instructed. Frequently this passes from negative reinforcement of positive behaviors to outright punishment for undesirable behaviors (such as stimming). Moreover, as one anonymous reviewer notes, even if only positive reinforcement is used, then withholding that reinforcement can itself be taken by the child as a form of harm. If we can make a case against ABA even when it does not involve action immediately harmful to the child, a fortiori ABA that involves aversives will be even more problematic.

§1.3.1 The surgeon general’s [warning]

Many proponents of ABA as a treatment for ASD cite its extensive support among policy makers, frequently citing that it has been endorsed by the United States Surgeon General (e.g., AutismSpeaks 2012, California Autism Center n.d.). The report in question, issued in 1999, states that ABA has thirty years of research supporting it. One fnds in the Surgeon General’s Report a crystallization of the argument in favor of ABA— namely, that it is effcacious. For the purposes of this paper, we will mostly be granting the claim that ABA is effcacious—indeed, we argue that to a certain extent that is precisely the problem. If ABA were not effcaciously doing anything, the burdens it places on patients (25–40 hours a week, plus other issues to be discussed in §5) would obviously render it ethically odious. However, granting that it does something, we worry about what ABA is effcacious in doing.

Here is the defnitive statement of ABA’s success:

Thirty years of research demonstrated the effcacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleague. Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Follow up of the experimental group in frst grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched

[ 38 ]

WILKENFELD AND McCARTHY • CONCERNS WITH BEHAVIOR ANALYSIS FOR AUTISM

control group were able to participate in regular schooling. Up to this point, a number of other research groups have, provided at least a partial replication of the Lovaas model. (National Institute of Health 1999, 164, internal citations omitted)

Put charitably, the success of ABA was that it gave children the tools they needed to fourish in the environment in which they found themselves. Put uncharitably, thirty years of research validated the claim that with intense conditioning (40 hours a week, per the report) one can successfully get children to act as if they belong in a particular social construct.

§1.4 On the Nature and Limits of Behaviorism

Given that our primary contention will be that focusing solely on socially acceptable behavioral outputs leads to ethical problems for ABA, it is worth frst being a bit more precise about what behaviorism in general entails. Borrowing from Graham (2019), we can divide strict behaviorism into three compatible but distinct doctrines:

1) Methodological Behaviorism: Psychology is the study of behavior, not the mind.

2) Psychological Behaviorism: Behavior can be described entirely based on external factors, without reference to mental events or internal psychological processes.

3) Analytic Behaviorism: Claims about mental states are really just elliptical claims about behavioral input-output relations.

Remarkably, while behaviorism remains the foundation upon which treatment plans are built, it has (to our experience) largely been discarded in philosophical circles in favor of either (most commonly) the cognitive science of representations (Thagard 2019) or (less frequently) models of embodied cognition (e.g., Varela, Thompson, and Rosch 2019/1991). Among other reasons behind this trend, one dominant view is that specifcally with regard to (at least) language use there is a general “poverty of the stimulus” (Chomsky 1959)—we simply aren’t exposed to enough proper linguistic utterances to assemble language that is grammatical, productive (we can generate seemingly indefinite utterances), and systematic (we do not fnd children who understand “Mary loves John” but not “John loves Mary,” despite having very different inputs and outputs).

For our purposes the important thing to note is that there is at least strong philosophical reason to suppose that, in addition to what people do, there is at least prima facie reason to suppose that it is important to

[ 39 ]

KENNEDY INSTITUTE OF ETHICS JOURNAL • MARCH 2020

take into account what people think and the perspective from which they view the world. However, as this is not necessarily the venue in which to settle long-standing metaphysical arguments, our ultimate contention (§3.2) will turn not on behaviorism’s defcits as a foundational assumption from the perspective of theory of mind, but on its defcits as a foundational assumption from the perspective of modern bioethics.

In this paper, we will argue that autism advocates’ rejection of ABA is bolstered by ABA’s failure as an ethical treatment by contemporary standards. To illustrate this, we frame our discussion using the four principles of bioethics, most commonly traced to Beauchamp and Childress (2012). Our argument against the permissibility of ABA focuses predominantly on the specifc way in which ABA undermines the principle of respect for autonomy. However, ABA should also be scrutinized on the basis of considerations of non-malefcence, benefcence, and justice. We will address how these issues manifest as they arise in the paper.

§2 RESPECT FOR AUTONOMY IN AUTISTIC CHILDREN

We will argue that ABA is pro tanto unethical because it violates the autonomy of the children who are subject to it. We recognize that this argument will be controversial, not least because it is uncommon in the bioethical literature to treat respect for autonomy as a relevant moral consideration in decision making on behalf of young children. However, we think this generally is an error. An additional beneft of examining why ABA violates autonomy is that it helps illustrate one reason why respect for autonomy is morally relevant when making decisions on behalf of even young children.

§2.1 Respect for Autonomy vs. Respect for Decisional Authority

To begin, we will separate respect for autonomy from another moral consideration that is often confated with respect for autonomy: respect for decisional authority. Decisional authority concerns who, in a decis

Collepals.com Plagiarism Free Papers

Are you looking for custom essay writing service or even dissertation writing services? Just request for our write my paper service, and we'll match you with the best essay writer in your subject! With an exceptional team of professional academic experts in a wide range of subjects, we can guarantee you an unrivaled quality of custom-written papers.

Get ZERO PLAGIARISM, HUMAN WRITTEN ESSAYS

Why Hire Collepals.com writers to do your paper?

Quality- We are experienced and have access to ample research materials.

We write plagiarism Free Content

Confidential- We never share or sell your personal information to third parties.

Support-Chat with us today! We are always waiting to answer all your questions.