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The overwhelming majority of professionals who serve the autistic community using applied behavior analysis (ABA) do so from a place of caring and compassion to improve the quality of life for the individuals they serve. As researchers and practitioners, the authors feel it is essential to acknowledge concerns that have arisen from neurodiversity activists and their families surrounding the effects ofABA on the autism population and claims that the goals and strategies in ABA are ableistic. This paper will highlight major issues neurodiversity advocates have reported regarding ABA, examine areas considered to be ableistic, and discuss ways ABA has positively impacted society while emphasizing the importance of listening and responding to expressed concerns ofstakeholders.
Abstract: The overwhelming majority of professionals who serve the autistic community using applied behavior analysis (ABA) do so from a place of caring and compassion to improve the quality of life for the individuals they serve. As researchers and practitioners, the authors feel it is essential to acknowledge concerns that have arisen from neurodiversity activists and their families surrounding the effects ofABA on the autism population and claims that the goals and strategies in ABA are ableistic. This paper will highlight major issues neurodiversity advocates have reported regarding ABA, examine areas considered to be ableistic, and discuss ways ABA has positively impacted society while emphasizing the importance of listening and responding to expressed concerns ofstakeholders.
Judy Singer (1999) has commonly been credited for coining the term neurodiversity, which Harvey Blume (1998) and Jim Sinclair helped to popularize and advance. Neurodiversity is based upon the concept of biodiversity, in that high levels of biodiversity are desirable and necessary for an ecosystem to thrive (Baron-Cohen, 2019; Masataka, 2017). In this sense, neurodiversity means that neurology is very diverse (Singer, 1999), similar to biology, and high levels of neurodiversity are desirable and necessary for a society to thrive. Since its first introduction and description, the term neurodiversity has been misused, misunderstood, and has come to mean many different things to many different people (Arnold, 2017; Walker, 2014); however, for the purposes of this manuscript, neurodiversity will be used as it was first described - a term describing variability in neurological functioning (Jaarsma & Welin, 2012). Therefore, neurodiversity includes neurodivergent people (i.e., those with neurological functioning that differs from what is commonly considered typical neurological development not solely autistics/individuals diagnosed with ASD) as well as neurotypical people (i.e., those with neurological functioning that aligns with what is commonly considered typical neurological development). In an effort to support varying individual preferences, person-first and identity-first language will be used throughout the paper.
The neurodiversity movement represents a group of individuals who advocate for the rights (e.g., inclusion, autonomy) of neurodivergent people. "This includes aspirations of full inclusion in education, employment, and housing; freedom from abuse (e.g. [sic] abolition of seclusion and both chemical-that is, overmedication to control behavior-and physical restraint); and the right to make one's own decisions with support as needed" (Kapp, 2020, p. 4). While this involves advocating for more than just autistics/individuals diagnosed with ASD, the movement is largely led by autistics/individuals diagnosed with ASD (Neuroclastic, 2021). As such, for the purposes of this manuscript, neurodiversity movement is used to refer to the movement as it relates to autism. As applied to autism, the neurodiversity movement views autism as naturally occurring diversity in neurology, which requires no cure or prevention (Bagatell, 2010). Ultimately, the neurodiversity movement "seeks to help families with advocacy for acceptance, understanding, and support that can positively impact people across the autism spectrum and their parents" (Kapp, 2020, p. 5).
Some members of the neurodiversity movement have raised concerns about the use of interventions, including methods informed by applied behavior analysis (ABA; e.g., reinforcement-, punishment-, extinction-based procedures), with autistics/individuals diagnosed with ASD (Milton, 2018; Sandoval-Norton & Shkedy, 2019). The concerns are broad, spanning from intervention methods to intervention goals and are commonly fueled by claims that ABA-based interventions for autistics/individuals diagnosed with ASD are abusive and lead to anxiety and/or post-traumatic stress disorder (PTSD; Kupferstein, 2018).
A primary concern from some members of the neurodiversity movement is that ABA-based interventions for autistics/individuals diagnosed with ASD, or the field of ABA more generally, promotes ableism (Shyman, 2016). Ableism is discrimination against those who are "less able" and, therefore, supports a preference for normative abilities within the species (Wolbring, 2008). In turn, "interpretations of ableism are based on perspectives of what constitutes normal abilities" (Britannica, 2013). Ableism within society has evolved throughout the 20th century. Instances of ableism date back to the 1880s when many people with disabilities were forced to be sterilized to prevent them from having children and were also segregated from the rest of the community (National Conference for Community and Justice, n.d.). By the 1920s, most people with disabilities were institutionalized as this was seen as the best option (National Conference for Community and Justice, n.d.).
Ableism toward people with disabilities continued into the 1960s when the civil rights movement empowered those with disabilities and their allies to fight for legal protection against discrimination (Faville, n.d.). As a result, the Rehabilitation Act of 1973 was passed, which guaranteed education to all children with disabilities, prohibiting discrimination against the disabled (Hehir, 2002). However, it was not until 1990 that the Americans with Disabilities Act (ADA) was passed, protecting all citizens with disabilities from discrimination based on their disability (National Conference for Community and Justice, n.d.). The laws were passed to protect those with disabilities in the workplace, schools, and communities as a whole and to provide equal opportunities for all citizens regardless of ability.
The use of the term ableism and acts related to ableist belief systems has a long history and, with that, a long history of descriptions. Recently, ableism has been broadly described as "stereotyping, prejudice, discrimination, and social oppression toward people with disabilities" (Bogart & Dunn, 2019, p. 651). The concern that ABA-based interventions for autistics/individuals diagnosed with ASD is ableist appears to be related to the goals for recipients of ABA-based interventions to engage in behavior which would generally be considered neurotypical. In this way, behavior analysts are viewed to be contributing to the negative stereotype that behaviors exhibited by autistic/individuals with autism need to be remediated. For instance, some members of the neurodiversity movement contend that interventions, which target motor stereotypy (e.g., hand flapping) or insistence on sameness in routines and interests are unnecessary because they cause no harm to the individual (Anxious Advocate, 2015). Furthermore, autistics/individuals with ASD often contend that goals directed at mitigating restrictive, repetitive behaviors contributes to the negative and unacceptable stigma of autistics/individuals diagnosed with ASD (Kapp et al., 2019). In other words, remediating core symptoms invalidates acceptance. In a similar way, encouraging mainstream behaviors, such as eye contact, force autistics/individuals diagnosed with ASD to conform.
To discourage interventions targeting these types of behaviors, neurodiversity advocates suggest everyone, including behavior analysts, accept the individuality of autistics/individuals diagnosed with ASD rather than attempting to remediate behaviors to suit neurotypical standards (Shyman, 2016). This movement emphasizes that "barriers imposed by non-autistic society hinder the fulfillment of autistic people and assert it is a societal responsibility to remove these barriers" (Bottema-Beutel et al., 2020, p. 4). Therefore, rather than changing the behavior of the person, society needs to accept autistics/individuals diagnosed with ASD for who they are.
The concerns of members of the neurodiversity movement who consider ABA-based interventions for autistics/individuals diagnosed with ASD as ableist can be broadly categorized as 1) the type of language used to describe/refer to autistics/individuals with ASD (Areheart, 2008; Bottema-Beutel et al., 2020; Gernsbacher, 2017; Shyman, 2016; Wolbring, 2004), 2) selection of goals in research and treatment (Pellicano & Stears, 2011; Shute, 2010; Shyman, 2016) and 3) indistinguishability (George, 2018; Shyman, 2016). To date, there have been limited discussions within the behavior analytic literature about these concerns (Leaf et al., 2021). Therefore, the purpose of this paper is to evaluate and discuss concerns from members of the neurodiversity movement that ABAbased interventions for autistics/individuals diagnosed with ASD are ableist.
Medical Model Language
The Concern
One way in which practices informed by ABA have been alleged to promote ableism is through embracing the medical model (Shyman, 2016). The medical model was founded during the Scientific Revolution and the term medical model is a framework for how we conceptualize illness (Engel, 1977). Initially, the medical model was used within the field of medicine to determine and treat ailments (Wade & Halligan, 2017). The model was later applied to mental health and psychotherapy to treat disturbing patterns of behavior (Farre & Rapley, 2017). Within the medical model, clients are categorized based on illness, symptoms, or deficits. These titles result in the client receiving a label and/or diagnoses such as "healthy" or "sick," "disabled" or "non-disabled," "autistic" or "not autistic" (Areheart, 2008; BottemmaBeutel et al., 2020; Shyman, 2016). Within the medical model, a neurotypical individual would be labeled as "non-disabled" whereas an autistic/individual diagnosed with ASD would be labeled as "disabled." Under this model, an individual is characterized by having attributes of incapacity and dependence and portrayed as requiring assistance to overcome effects of their disability (Areheart, 2008).
Bottemma-Beutel et al. (2020) suggested the medical model is inherently ableist. By categorizing those with ASD as "disabled," skill deficits are highlighted and, in turn, treatment is required and administered to alleviate those deficits in an effort to move individuals toward what society considers "normal." In other words, following a medical model discriminates against autistics/individuals diagnosed with ASD because it labels them with disability, indicating a difference and separation from the rest of society (Bottema-Beutel et al., 2020).
Shyman (2016) suggested that behavior analytic intervention is directly focused on rehabilitating autistics/individuals with ASD and therefore follows the medical model. Within behavioral intervention for autistics/individuals with ASD, a practitioner seeks to increase the likelihood of desired behaviors (e.g., social behavior, language, academic skills) while decreasing the likelihood of undesired behaviors (e.g., aggression, self-stimulatory behavior, self-injury). This is achieved through the manipulation of contingencies and other environmental variables. Advocates of the neurodiversity movement assert that through behavior analysis, autistics/individuals diagnosed with ASD must be changed to behave/act a certain way (Shyman, 2016). Thus, according to advocates of the neurodiversity movement, behavior analysts follow a medical model and are therefore ableist.
The Response
There is no denying the fields of education and medicine have embraced the medical model. This is true for people who are diagnosed with an intellectual disability, anxiety, post-traumatic stress disorder, and autism (Fritscher, 2020; Shyman, 2016). To receive a diagnosis, a professional administers several assessments (e.g., ADOS, GARS-3) to determine if the individual meets a diagnostic criterion set forth by the Diagnostic and Statistical Manual, Fifth Edition (DSM-5; 5th ed.; DSM-5; American Psychiatric Association, 2013). Further, these assessments are used to determine the level of severity (Bernier, 2012). This level of severity is assessed by eliminating or identifying a comorbidity, such as intellectual impairment or global developmental delay (5th ed.; DSM-5; American Psychiatric Association, 2013). Once an individual receives a diagnosis, a medical provider prescribes a course of treatment. This entire process may be viewed as ableist. For one, it classifies an individual as disabled, not-disabled, neurotypical, or neurodiverse. Second, it is likely to result in intervention, which seeks to focus on increasing certain behaviors (e.g., social behavior) while decreasing others (e.g., aggression).
A medical diagnosis is often required to access insurance coverage for services (American Speech-Language-Hearing Association [ASHA), n.d.), however insurance-funded guidelines may vary from state to state. Further, a diagnosis is often needed for an individual to receive an Individualized Education Program (IEP; Center for Autism Research, 2020). Without this type of funding or legal documentation it would be more difficult for individuals to receive services, which could be necessary to develop language, the skills to make friendships, and decrease unsafe behaviors such as self-injury or injury to others (Bartman & Freeman, 2003; O'Reilly et al., 2005; Roeyers, 1996; Weiss & Harris, 2001). Thus, this model seems necessary to ensure autistic/individuals diagnosed with ASD receive services geared toward achieving a high quality of life (Gambrill, 2013; Hendricks et al., n.d.; Massachusetts Behavioral Health Partnership, 2021). This model can be beneficial for many in that it results in access to much needed services. However, it is possible that this model can result in discrimination in some instances (e.g., a focus solely on eliminative approaches and decontextualized skills). It may also make a person's disability the focus of intervention rather than the person themselves.
While it is true that the diagnosis process follows a medical model, there are several differences between a traditional medical model and a behavior analytic approach to care for autistics/individuals with ASD. Within the medical model a practitioner is concerned with a diagnosis or a label, and this knowledge can be useful in guiding some aspects of treatment. We recognize that it is important for behavior analysts to be well educated on the population with whom they are working. A behavior analyst's responsibility is to objectively evaluate behaviors to be increased or decreased and provide intervention as such (Hendricks et al., n.d.). Practicing behavior analysts apply methods informed by the science of ABA and develop function-based interventions (Cooper et al., 2020). Additionally, behavior analysis does not focus on an underlying cause or medical marker, rather it focuses on behavior-environment interactions. Thus, while the medical model utilizes a collection of symptoms to diagnose an individual with ASD, behavior analysis utilizes an individualized approach to program development in which the individual is a whole person, not a collection of symptoms, and strives to incorporate what is socially valid to the relevant stakeholders.
Person-First Language
The Concern
Another way behavior analysts and other professionals are said to promote ableism is the use of person-first/identify first language (BottemaBeutel et al., 2020). An example of person first language is "an individual diagnosed with autism spectrum disorder" while identity first language would be "an autistic individual." Personfirst language was advocated for in the 1960s in response to acts of dehumanization to those with disabilities, to preserve their personhood (Bottema-Beutel et al., 2020). However, more recently autistic advocates have become proponents for identity-first language suggesting the person cannot be separated from the diagnosis and is therefore part of their identity (Botha et al. 2021; Bury et al., 2020). Separating the diagnosis from the person within person first language is viewed as indicating the diagnosis is not a good thing and needs to be separated from the individual (Sinclair, 2013). It has been argued that person first language is used inconsistently and is only used to describe those with a disability, ultimately emphasizing disability rather than the person (Gernsbacher, 2017). Bottema-Beutel et al. (2020) suggested professionals use identity first language. Proponents of identity-first language suggest this language emphasizes the importance of recognizing autism is representative of one's identity (Brown, 2011).
The Response
Research has demonstrated perspectives on the use of language differ based on the social community. Kenny et al. (2016) surveyed 3,470 residents to determine preference for terms to describe autism. The terms selected in the study were identified by those in the autism community including parents, autistic adults, and professionals. Participants who took the survey consisted of individuals who considered themselves autistic, parents of people with autism, professionals including researchers, students, and volunteers who work in the autism community, and family members and friends. Most respondents identified themselves as a parent of someone with autism and female of white ethnic background. Kenny et al. found that 61% of adults with autism and 38% of professionals who service the autism community preferred the term "autistic." The term "person with autism" was preferred by 28% of adults diagnosed with autism and 49% of professionals who service the autism community. While the term, "autistic" has been widely endorsed by some neurodiversity advocates, it was not preferred by an overwhelming majority of adults diagnosed with autism that participated in this study.
Bury et al. (2020) conducted a similar study of terms in Australia; however, only adults diagnosed with autism were included as participants. In this study, terms that label autistic individuals/individuals with ASD were ranked based on preference and offensiveness. The term, "Autistic" was ranked as most preferred and the phrase "person with autism spectrum condition" was ranked as least preferred. The phrase "person on the autism spectrum" was ranked as least offensive and the phrase "Person with autism spectrum disorder" was ranked as the most offensive. Statistical analysis using the Friedman test suggested the phrase "person on the autism spectrum" was ranked significantly higher overall. An interesting component of this study is it included a thematic analysis of term preference and offensiveness, which described why specific phrases were selected as offensive or preferred. For example, one theme was described as "having autism was only one part of their identity", which is why some participants preferred the term "person with autism" because "opening with person emphasizes shared humanity with the neurotypicals" (Bury et al. 2020, p. 8). Responses were classified into other themes including "having autism is core to my identity," "I am different, not disordered," "diversity within the spectrum," "language can stereotype and stigmatize," and "pragmatic." The variety of themes outlined in this study demonstrated the myriad of reasons why some phrases may be more preferred or used than others. Overall, the results supported terms that satisfied participants desire to stress humanity as well as their uniqueness.
While there is no term preferred by all of those involved in the autism community, differences in preferences and level of offensiveness must be considered when describing and interacting with autistics/individuals diagnosed with ASD. The most appropriate language (i.e., person or identity first) must be varied based upon the audience. When talking to any individual, the behavior analyst should ask them their preferred descriptors and pronouns (e.g., autistic or person diagnosed with autism). This same guideline should be used when describing a participant within a research study and/or a formal report. If it is not known how a group would like to be addressed then it is safer, and possibly more compassionate, to use a combination of phrases (e.g., autistic/individual diagnosed with ASD); as it does not alienate the preference of any one individual. It is imperative that we recognize that the judgement of some is not always the preference of all. Indeed, preference is what needs to both be assessed and respected.
Person first language may represent an example of compassion and respect for individual preferences as opposed to an underlying ableist view. However, Bottema-Beutel et al. (2020) acknowledged this view may act as a barrier to a systemic change in the language. It may be the case that small shifts in language (e.g., "person with autism spectrum disorder" to "person on the autism spectrum") could respectfully communicate to all audiences. This type of evaluation and modification should be considered within the autism community and field of ABA. Behavior analysts, those who have received a diagnosis of ASD, and neurodiversity advocates should work collaboratively to identify the most preferred and least offensive alternative for terms used.
Goal Selection in Research
The Concern
A third way which behavior analysts have been considered ableist is the lack of involvement of autistics/individuals diagnosed with ASD in research (Ne'eman, 2018). By not having autistics/individuals diagnosed with ASD actively participating in all aspects of the research process, behavior analysts are, at times, viewed to be discriminating against the population and promoting ableism. Neurodiversity advocates support an inclusive approach to autism research where autistic individuals/individuals with ASD are included beyond a passive participant (Autistic Self-Advocacy Network, 2021; Ne'eman, 2018, Slide 46). Collaboration with autistics/individuals with ASD should be promoted at all stages of research, "from topic selection to data collection and analysis to conclusion and publication" (Ne'eman, 2018, Slide 54). Second, it has been highlighted that there is a discrepancy between topics of research which is currently being explored and published and research which is deemed valuable by autistics/individuals diagnosed with ASD (Ne'eman, 2018, Slide 43). The assertion is that today, most of the scientific research surrounding autism has been directed toward either finding a cause or finding a cure, both of which align with the medical model (Pellicano & Stears, 2011). Some neurodiversity advocates contend that funds should be allocated toward a way to assimilate everyone into society (Pellicano & Stears, 2011).
Neurodiversity advocates believe that autistics/individuals with ASD possess what they refer to as "experience-based expertise" (Collins & Evans, 2002, p. 6). The autistic community has experience being autistic and, therefore, can contribute anecdotal data which they assert may be just as valuable as the quantitative data in the research process (Collins & Evans, 2002). This experience-based expertise is said to be able to help on all aspects of research from designing studies, to measuring behavior, to the dissemination process (Collins & Evans, 2002). Further, neurodiversity advocates believe having autistic/individuals diagnosed with ASD as part of research would result in research focusing on what constitutes quality intervention and quality outcomes (Gillespie-Lynch, 2017). Many of the neurodiversity advocates believe researchers should focus on other areas of interest, such as funding investigations, which would have a more immediate impact (e.g., interventions and increased service delivery for those in need; Shute, 2010). Finally, including autistic/individuals diagnosed with ASD may help balance out the current power imbalance between scientists, funders, and the autistic community (Ne'eman, 2018, Slide 54).
The Response
Behavior analysts have long believed consumers play an integral part of research and clinical practice (Wolf, 1978). One of the founding principles of ABA is for the need of social validity. Behavior analysts have long believed consumers are integral team members in terms of the behaviors being evaluated and the procedures implemented. This belief is not just in clinical practice but is also important for behavior analysts who conduct research. A core belief in behavior analysis is for researchers to consult with major stakeholders to help guide research, for those working in the autism community this could include autistics/individuals diagnosed with ASD. In other words, autistics/individuals diagnosed with ASD should be considered part of research teams. While it important for autistics/individuals diagnosed with ASD to be part of the team it is also imperative for researchers to conduct studies with a high degree of quality. This means researchers make sound decisions about the independent variable(s), dependent variable(s), measurement systems, reliability and fidelity checks, research design selection, ensuring experimental control is established, and proper dissemination. All of this could be referred to as falling within one's scope of competence (Brodhead et al., 2018) within research. "Scope of competence refers to activities that the individual practitioner can perform at a certain criterion level" (Brodhead et al., 2018, p. 1). Therefore, it is important that all members of a research team, including autistics/individuals diagnosed with ASD, be competent in key aspects of research and dissemination. If any individual of the research team, autistic or otherwise, is not competent in research methodology, we would encourage training in any necessary areas. We would also encourage agencies to provide trainings on research methodology to provide accessible opportunities for autistics/individuals diagnosed with ASD to develop any necessary research repertoires.
As previously stated, a critique about current behavior analytic research is that the autistic community does not approve of what is being studied and that the professional community does not value experience-based expertise (Collins & Evans, 2002; Ne'eman, 2018, Slide 42). Despite the fact that autistics/individuals with ASD have expertise in the lived experience of autism, it does not mean that one possesses a knowledge of aspects of research design, experimental control, objective measurement, and other aspects that are critical to quality research. However, applied behavior analytic research should always include independent and dependent variables that are socially important to the participants within a study (Baer et al., 1968). To ensure the procedures and outcomes are important to the participants, researchers should collect different social validity measures. Unfortunately, recent reviews have shown that social validity measures are rarely taken within behavior analytic research (Ferguson et al., 2019). Researchers need to do better job when it comes to assessing social validity. We implore all researchers to do a better job of taking social validity measures and do a better job of reporting how social validity is taken. In addition to taking social validity measures, we must improve upon how these measures are taken. One way this can be achieved is by distributing social validity measures throughout a study to assess procedures, goals, and outcomes at different temporal markers (e.g., baseline, intervention, and post-intervention). Additionally, a quantitative method of analyzing social validity data, including an account for response bias, has potential to increase the fidelity of the social validity tool. Doing so will help ensure the behaviors and procedures being studied are important to the autistic community.
We also agree with members of the neurodiversity movement that the autistic community should help shape what is being researched when it comes to autism. The important point is for there to be an honest recognition that autism is a spectrum and perspectives of autistics are varied. This means that research goals will vary in importance and value to individuals depending not only on the expression of neurodivergent traits but also their lifestyle, personal goals and learning history. There are autistics/individuals diagnosed with ASD who are non-vocal/verbal and there are autistics/individuals diagnosed with ASD who are fully conversational (Rudy, 2021). There are autistics/individuals diagnosed with ASD who have large group of friends and there are autistics/individuals diagnosed with ASD who are socially isolated (Mendelson et al., 2016). There are autistics/individuals diagnosed with ASD who engage in high rates of self-stimulatory behavior and there are autistics/individuals diagnosed with ASD who engage in low rates of self-stimulatory behavior (Rudy, 2021). There are autistics/individuals with ASD who value ABA and those who see it as detrimental (Ask an Autistic, 2019; Leaf & Cihon, 2020). It would be beneficial for research groups to evaluate their needs and develop a system to assist in determining a way to include representation across the spectrum. It is a wide spectrum, and a wide variety of autistic voices should be included at the table; having such a wide variety of opinions can better improve the field and the quality of work generated.
Decades of the research, which has led to evidence-based assessment and teaching procedures, has made a meaningful difference for individuals within in the autistic community. Assessment and teaching programs based on the analysis of verbal behavior (Skinner, 1957) have been instrumental in increasing language and communication skills (Bondy & Frost, 2011; Sundberg, 2008). There is critical research, which shows participants having significant deficits in social behavior and establishing a large repertoire of social skills (Leaf et al. 2010) leading to enrichment in their lives, including development of friendships and other important relationships. Research has demonstrated behavior analytic procedures can greatly reduce aggression (Brosnan & Healy, 2011), self-stimulatory behavior (Cividini-Motta et al. 2020; Koegel et al. 1974), and stereotypic behavior (Koegel & Koegel, 1990; Lee et al. 2007) that can impede learning, be socially stigmatizing, be barriers to happiness, and limit access to reinforcers in a variety of different environments. Behavior analytic procedures have progressed over the years resulting in more humane and compassionate intervention, leading to better outcomes for our consumers (Taylor et al. 2018). Thus, although we can always improve upon our research, our current empirical research has been and continues to be robust and meaningful.
Goal Selection in Treatment
The Concern
Another way in which behavior analysts are purported to be ableist is that autistics/individuals diagnosed with ASD are not included as part of the treatment planning process (Lightner, 2020; Sankar, 2021). Autistics/individuals with ASD may not be invited to participate in the development of their own goals because of a lack of the necessary skill set or those responsible for goal selection may perceive a lack of skill set to effectively and meaningfully participate in program or IEP development (Lightner, 2020).
Relatedly, goals may be proposed which the student does not necessarily find important or are not age appropriate for the student, which undermine the student as a contributor to their own goals and refuses them the opportunity to object the proposed goals. Perspectives surrounding this type of consent have been a concern of neurodiversity advocates (Sankar, 2021). This supports the ableist view that autistics/individuals with ASD are seen as unable to determine their own treatment goals when they do seek treatment and that someone else is more able to select meaningful goals. It is believed the focus of interventions should shift toward what is considered "person-centered goals" (Ne'eman, 2018, Slide 32; Shyman, 2016). In this way, interventions focus on creating an autistic adult, which leads a happy life, not an autistic adult who was taught to fit into societal norms. Targets such as increasing eye contact, reducing self-stimulation, or teaching compliance would be considered goals towards indistinguishability, while targets such as communication skills and independent living skills would be considered person-centered goals (Ne'eman, 2018, Slide 32).
The Response
Behavior analysts have long been concerned about including clients as part of the treatment selection process. A critical aspect of service delivery is providing the clients with enough information to make an informed choice about treatment (Romanczyk & Gillis, 2005). It is almost certainly true that this may not be as fully realized as advocates and behavior analyst would like. We must partner with advocates to improve this aspect of our service delivery. However, one aspect that requires more thoughtful consideration is how old and what level of functioning/understanding does the client need to effectively make an informed choice (Lutz, 2021). Often, young children cannot make an informed decision and rely on the judgement of caregivers, professionals, and other adults. This is because a young child may not have a strong understanding of the long-term consequences when targeting the development ofvarious repertoires. For example, a student may not want to brush their teeth. However, most would agree that this is an important goal given that if they elect not to brush their teeth they are exposing themselves to serious health risks as well as possible social consequences because of poor hygiene related to not brushing one's teeth. Thus, young consumers may not be the best equipped to determine the full scope of what skills to target as part of comprehensive programing. Therefore parents, educators, and/or helping professionals are usually responsible for the education of young children.
This is seen commonly in education within our school systems. Most curricula developed in schools are created without the consent or contributions of children learning the curriculum. Subjects including geometry, biology, and algebra are required by state educational leaders to be included within curricular standards. Public schools are mandated to provide these frameworks and submit to testing requirements to receive funding. As a society, we do not allow our students to refuse to learn these skills. This lack of including young children in the determination of what they need to learn is not a unique form of discrimination applied only to autistic children. Importantly, as children grow older they have a say in how or whether they will use these skills in the future. So, while we must value the input of our consumers diagnosed with ASD in developing their goals, there may be goals and skills, which caregivers or professionals decide are in their best interest to learn.
As a child gets older they should become more involved with the programmatic decisions within their intervention. For example, students under the age of 14 years do not routinely play a role in the IEP development process. As a student approaches the age of 14 years, they are invited to participate in the development of their educational program in which they contribute to their own vision and goals and the steps required to reach that vision in their future. In fact, it is mandated by Individuals with Disabilities Education Act (IDEA) for students ages 14 years and older to participate as appropriate (IDEA 2004). However, a lack of self-advocacy skills may present a barrier to participation for students in their IEP development (Barnard-Brak & Fearon, 2012). As such, teaching self-advocacy skills would be a relevant goal to target at a young age in preparation for participation in goal development. Some students diagnosed with ASD may show resistance to learning some skills which would allow them to more effectively participate. Students may refuse to participate in services, which teach self-advocacy skills because it is a difficult skill to learn or because they know they will have to communicate in a large group of people. By avoiding teaching these skills based on resistance we would in effect prevent a student from acquiring competence in the ability to advocate for themselves in the future.
A behavior analytic program should implement a comprehensive curriculum (Olley, 1999; Sundberg & Partington, 1998). A comprehensive curriculum should include communication goals (Sundberg & Michael, 2001), social skills (Krasny et al., 2003), academic goals (Olley, 1999), daily living skills (Bahry et al., 2021), adaptive skills (Bahry et al., 2021; Olley, 1999), leisure skills (Bahry et al., 2021), and reduction of behaviors which may be harmful to the learner. Behavior analysts must ensure goals are functional, applied, and meaningful (Ayres et al., 2011). As previously stated, it is an expectation in the field that behavior analysts create socially valid goals. Creating socially valid goals requires consideration from the relevant stakeholders and should be at the core of all decisions related to treatments and interventions (Carter, 2010). The autistic individual for whom the goals are developed is unquestionably a relevant stakeholder. Finally, behavior analysts must ensure all curriculum is individualized (Ayres et al., 2011). The considerations above have always been the hallmark of a quality, progressive behavioral intervention (Leafetal., 2016).
Although behavior analysts and intervention team members should work to achieve a consensus on the focus of and importance of all aspects of the curriculum, there are areas of disagreement with advocates of the neurodiversity movement including goals surrounding stereotypic behavior, eye contact, and compliance. Research has shown engagement in stereotypic behavior can decrease observational learning (Varni et al., 1979) and play skills (Koegel et al., 1974), affects responding on discrimination tasks (Koegel & Covert, 1972) as well as academic tasks (Cook & Rapp, 2020), inhibits the development of social relationships with peers (Reese et al., 2005), affects performance in school or work settings (Lanovaz et al., 2013), and contributes to high levels of parental stress (HillChapman et al., 2013), and reduced family functioning (Boyd et al., 2011). When behavior analysts target stereotypic behavior it should only be because it is interfering with the individual's ability to function in learning settings or the community. Behavior analysts should only recommend targeting stereotypic behavior when it is in the best interest of the individual consumer in the short and long term.
If stereotypy is functioning as a soothing mechanism or method to relieve anxiety, behavior analysts have strategies that may work with autistics/individuals diagnosed with ASD to develop alternatives to stereotypy that may be more effective and less stigmatizing in certain circumstances. This may involve shaping alternative repertoires (e.g., skills to exit a challenging conversation, learning to respond to the contextual cues within a challenging conversation) and providing the individual with other means to access these environments with a reduction of behaviors related to anxiety (Koegel et al., 2016), or developing behaviors for self-soothing, which may be accessed covertly (e.g., teaching deep breathing). The focus and intent is not to prevent an autistic individual from self-soothing or managing anxiety, but to build a range of skills to "enable" them to do so effectively.
Second, developing and/or improving attending skills with a communication partner (and in particular peers) is not ableist. Like stereotypic behavior, developing the conditions under which attention is and is not beneficial may be vital for the overall improvement and happiness of a consumer's life. Research has shown eye contact can result in faster skill acquisition (Silva & Fiske, 2020), better language development (Mundy et al. 1990), and the development of social skills (Arnold et al., 2000; Carbone et al., 2013). It is important to note that eye contact, just like all behavior, should not be targeted in a decontextualized manner-which may be considered ableist. That is, eye contact is contextual and should be occasioned or not occasioned by the stimuli present in that context. In some cultures and social situations, eye contact is inappropriate. In other contexts, eye contact can lead to access to a variety of reinforcers that otherwise would not be available. This all must be considered when targeting eye contact, not doing so may lead to ableist practices (Arnold et al., 2000; Carbone et al., 2013; Mundy et al. 1990; Silva & Fiske, 2020).
Third, teaching compliance/instruction following is not ableist, but rather shaping a behavior, which can be lifesaving. However, context is also important here. That is, there are conditions under which compliance is essential and helpful. For instance, compliance with teacher instructions can result in a variety of learning opportunities and prevent disciplinary action within the school. Compliance with medical professionals can help with receiving vaccines or other essential medical care. Compliance may also be helpful in emergency situations (e.g., on campus emergencies such as fires, earthquakes, and tornados). There are also conditions under which compliance can be detrimental. For instance, complying with instructions from peers that are meant to demean or make fun of an individual. Compliance may also be detrimental when compliance with instructions from any adult, known or unknown, is taught or developed. Ultimately, compliance, like all other behavior, needs to be taught and discussed in context such that autistics/individuals diagnosed with ASD can identify the conditions under which compliance may be necessary or important and those in which it may be detrimental and counter-compliance is necessary.
We recognize that the term "compliance" is often seen as blind obedience to all instructions rather than a highly adaptive skill that all successful learners demonstrate. The ability to reliably attend to and consistently follow teacher classroom instructions is fundamental to school and classroom success. One can be the smartest person in class, but if one does not follow the teacher's directions reliably, they are going to be perceived as to have learning difficulties or behavior problems. If this is ongoing and chronic, they will likely not be able to remain in the regular education classroom setting. Successful inclusion in school is predicated on this skill being at a socially significant level. Thus, working on contextual compliance/instruction following is socially valid and should be considered a priority.
Indistinguishability
The Argument
A final critique of advocates of the neurodiversity movement is ABA's long history with indistinguishability (Kirkham, 2017; Shyman, 2016). The field of behavior analysis has used terms such as recovery (e.g., Lovaas, 1987; Stubbs et al., 1976), cure (e.g., Lovaas et al., 1973), and indistinguishable (e.g., Green, 1996; McEachin et al., 1993) as part of the terminal goals of intervention. Ne'eman (2013) defines indistinguishability as the belief that disabled people must appear to be non-disabled at the cost of remediating any behaviors, which deviate from non-disabled persons. Neurodiversity advocates view the goals of ABA as a discipline and all of its practitioners as striving toward normality in intellectual, social, or behavioral functioning; that the role of behavior analytic interventions is to 'cure' autism and decrease any 'abnormal behaviors.' The perception that the role and goal of ABA based interventions contributes to a negative stigma in the autism community, deeming traits viewed as "abnormal" as undesirable according to society's standards (Shyman, 2016). Anti-ableist advocates suggest ABA therapy attempts to make those with autism seem more 'typical' by teaching them to conform to societal norms intellectually, socially, and behaviorally (Kirkham, 2017). Neurodiversity advocates suggest "autistic" characteristics should be celebrated and not normalized (Bailin, 2019).
The Response
We recognize that the perception of many in the autistic community hold this view and do so because of the long history of many behavior analysts espousing this view. However, there is an equally strong movement in the ABA community rejecting these terms and following the analysts advice of Leaf and colleagues (2021) to eschew terms like "cure," "recovery," or "indistinguishability," and focus on having each client reach their full potential. Second, social contingencies dictate, to a large extent, how individuals behave within a social context. For example, when ordering food from a fast-food restaurant, if someone arrives to the line before you, societal norms would dictate that you wait in line behind that person for your turn to order. A goal for therapy aligning with this norm would be to target waiting and recognizing when it is your turn to order food. By aligning therapy goals with current relevant repertoires, we can teach consumers in a way, which will help them maximize reinforcers in a relevant context. In the case of fast food waiting in line, the reinforcer may be to gain access to a preferred food. Without assessing alternative repertoires, we cannot assume some autistics/individuals diagnosed with ASD have the opportunity/skills to engage in behaviors, which may seem more "typical" in certain contexts. ABA aims to provide individuals with skills so they have the option to choose which behaviors they'd like to use in any given context.
While those diagnosed with autism may not engage in social behaviors in the same way neurotypical individuals do, this does not mean they do not want a social connection with family, peers, and other social groups (Jaswal & Akhtar, 2019). Human connection is an important aspect of the life of an individual. Research has demonstrated that autistics/ individuals with ASD have difficulty making social connections with others which puts them more at risk for depression (Ghaziuddin & Greden, 1998; Schlitz et al., 2017). Behavior analysts seek to develop repertoires which allow clients to make social connections with others. It is our responsibility as professionals to provide the support needed to develop the skills, which will help make those connections. Autistics/individuals with ASD benefit from the acquisition of skills, which provide access to additional learning opportunities/environments (Rosales-Ruiz & Baer, 1997). For example, teaching toileting skills at a young age can allow individuals to access new learning environments including daycare or preschools. Accessing these environments opens doors to additional reinforcers through social interactions, academic learning opportunities, and generalization of communication skills. These skills are targeted to develop autonomy, friendships, and academic success. By excluding autistics from learning these repertoires to avoid 'indistinguishability,' we are excluding them from the opportunities their peers can access.
It is an unfortunate reality that autistic adults are chronically under-employed (Taylor & Seltzer, 2011). This reality is largely a function of challenges and difficulties related to social behavior rather than work skills. If this employment gap is to be addressed successfully, then building adaptive (and yes socially normative) behavior, will necessarily have to be addressed. While the goal of autistics/individuals with ASD may be for society to accept their behavior as normative, employers and customers currently do not universally do so. The challenge of underemployment for autistics is manifest evidence of the need to have goals and interventions in this area. At the same time, we should be moving the neurotypical employment environment to work toward more tolerance and expansion of supports within workplaces.
Conclusion
There has been an ever-increasing number of critiques about ABA as it relates to autistics/ individuals diagnosed with ASD (Ask an Autistic, 2019; Dawson & Fletcher-Watson, 2021; Leaf et al., 2021; Sandoval-Norton & Shkedy, 2019; Therapist Neurodiversity Collective, n.d.). These critiques are found in peer reviewed journals (Kapp et al., 2019; Sandoval-Norton & Shkedy, 2019; Kupferstein, 2018), advocacy groups (Ashburn, 2021; Autistic Self-Advocacy Network, n.d., silentlyspeakingvolumes, 2020), on social media (Listen, Learn, Lead, n.d., Therapist Neurodiversity Collective, n.d.), in podcasts (King, 2021; Rubio et al., 2020; Z. E. et al., 2021), and in conferences (Association for Behavior Analysts International, 2021; Massachusetts Association for Applied Behavior Analysis, 2021; Partners in Applied Behavior Analysis Conference, 2021). These critiques are occurring by people who identify as autistic (Ask an Autistic, 2019; Kapp et al., 2019) and/or Board Certified Behavior Analysts TM, who practice in the field of ABA (Listen. Learn. Lead., n.d.). These critiques may be correlated with the public denouncing of behavioral intervention (Hyten, 2021) defunding behavioral intervention (Griswold, 2021), and potential unethical and unprofessional behavior by behavior analysts. These criticisms of behavioral interventions can make it difficult for practitioners to provide behavior analytic services to consumers and to know how to respond.
Thus, the purpose of this paper was to provide a response to criticisms to behavioral intervention and continue dissemination efforts of professionals (Gorycki et al., 2020; Leaf et al., 2021; Ross, 2021) and organizations in productive ways. Secondly, the purpose of this paper is to evaluate and discuss concerns from members of the neurodiversity movement that ABA-based interventions for autistics/individuals diagnosed with ASD are ableist. This paper has demonstrated in many ways that the field of ABA strives toward the same goals for the autistic population as those in the neurodiversity movement. Behavior analysts should agree that a diagnosis does not diminish personhood, that people with disabilities should live rich, meaningful lives, and that the practice of behavior analysis must continue to improve including areas such as social validity measures, publication biases, and long term outcome studies. Additionally, it is imperative that bridges are built to the neurodiverse community, that their input is meaningfully and authentically heard, and that they assist the field in understanding what is needed from their perspective. Behavior analysts should continue to listen and act upon criticisms of ABA to improve upon our field. Behavior analysts should endeavor to operationally define ableism and analyze contingencies of ableistic behavior to better determine the ways in which ableism may be manifested in practice. This will allow us to identify and remediate ableism. At the end of the day, ABA is a helping profession. Behavior analysts use knowledge of how behavioral principles affect behavior to improve the overall quality of life for consumers. In a recent horrific tragedy, Feda Almaliti and her autistic son, Muhammed died in a house fire when the mother was unable to coax her son to leave the home. "We must never allow the plight of children and families dealing with severe autism to be suppressed by advocates who actively seek to downplay the serious mental challenges that end up killing them" (Wachtel, 2020). We must continue to look at big picture outcomes for our consumers and consider the sometimes-fatal consequences of the choices we make in treatment. We are not rejecting the autistic community's experiences, but we must listen to the voices of those who can speak and those who are unable to; the full spectrum of autistic experience must be valued and honored.
References
American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed). American Psychiatric Association.
American Speech-Language-Hearing Association. (n.d.). State insurance mandates for autism spectrum disorder. https://www.asha.org/advocacy/state/ states-specific-autism-mandates/
Anxious Advocate. (2015). Why I left ABA. https:// sociallyanxiousadvocate.wordpress.com/2015/05/ 22/why-i-left-aba/?fbclid=IwAR12tKxxp5HEC87u YmwctZY_HMOw6z-58tw4NlLH7xD5O3ys6CdUr 1LzZD0
Areheart, B. A. (2008). When disability isn't just right: The entrenchment of the medical model of disability and the goldilocks dilemma. Indiana Law Journal, 83, 181-232.
Arnold, L. (2017). A brief history of "neurodiversity" as a concept and perhaps a movement. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(5) http://www.larry-arnold.net/ Autonomy/index.php/autonomy/article/view/AR23
Arnold, A., Semple, R. J., Beale, I., & Fletcher-Flinn, C. M. (2000). Eye contact in children's social interactions: What is normal behaviour?. Journal of Intellectual and Developmental Disability, 25(3), 207-216.
Ashburn, M. (2021). The strategies of ABA-Not an Autism mom's thoughts: Part two. https://neuroclastic. com/aba-strategies/
Ask an Autistic. (2019, July 23). What is applied behavior analysis and why is it so terrible? Stop ABA, support autistics. https://stopabasupportautistics. home.blog/2019/07/23/what-is-applied-behavioranalysis-and-why-is-it-so-terrible/?fbclid=IwAR0ik NUdLEHUDSnawt29ORzdpUp-v_QtMaokgbnJP stj2xx3BFTvUmz3178
Autistic Self-Advocacy Network. (n.d.). Home. https:// autisticadvocacy.org/
Autistic Self-Advocacy Network. (2021). For whose benefit? Evidence, ethics, and effectiveness of autism interventions. https://autisticadvocacy.org/wp-content/uploads/ 2021/12/ACWP-Ethics-of-Intervention.pdf
Ayres, K. M., Douglas, K. H., Lowrey, K. A., & Sievers, C. (2011). I can identify Saturn but I can't brush my teeth: What happens when the curricular focus for students with severe disabilities shifts. Education and Training in Autism and Developmental Disabilities, 46(1), 11-21.
Baer, D. M., Wolf, M. M., & Rsley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal ofApplied Behavior Analysis, 1(1), 91.
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33-55.
Bahry, S., Driscoll, N., Cauchi, J., & Gerhardt, P.F. (2021, May 30). Meaningful curriculum and respectful intervention with individuals with ASD: Beyond a technology of behavior analysis alone [Conference Presentation]. Association for Behavior Analysis International, United States.
Bailin, A. (2019). Clearing up some misconceptions about neurodiversity. https://blogs.scientificamerican.com/ observations/clearing-up-some-misconceptionsabout-neurodiversity/
Barnard-Brak, L., & Fearon, D. D. (2012). Self-advocacy skills as a predictor of student IEP participation among adolescents with autism. Education and Training in Autism and Developmental Disabilities, 47(1), 39-47.
Baron-Cohen, S. (2019). The concept of neurodiversity is dividing the autism community. https://blogs. scientificamerican.com/observations/the-conceptof-neurodiversity-is-dividing-the-autism-community/
Bartman, S., & Freeman, N. (2003). Teaching language to a two-year-old with autism. Journal on Developmental Disabilities, 10(1), 47-53.
Behavior Analyst Certification Board (BACB). (2010). Behavior Analyst Certification Board guidelines for responsible conduct for behavior analysts. http://www. bacb.com/Downloadfiles/BACBguidelines/BACB_ Conduct_Guidelines.
Bernier, R (2012). How do we measure autism severity? https://www.spectrumnews.org/opinion/viewpoint/ how-do-we-measure-autism-severity/
Blume, H. (1998). Neurodiversity. On the neurological underpinnings of geekdom. The Atlantic. https://www.theatlantic.com/magazine/archive/ 1998/09/neurodiversity/305909/
Bogart, K. R., & Dunn, D. S. (2019). Ableism special issue introduction. Journal of Social Issues, 75(3), 650-664.
Bondy, A., & Frost, L. (2011). A picture's worth: PECS and other visual communication strategies in autism. Woodbine House.
Botha, M., Hanlon, J., & Williams, G. L. (2021). Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 51(1) 1-9.
Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2020). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18-29.
Boyd, B. A., McDonough, S. G., Rupp, B., Khan, F., & Bodfish, J. W. (2011). Effects ofa family-implemented treatment on the repetitive behaviors of children with autism. Journal of Autism and DevelopmentalDisorders, 41(10), 1330-1341.
Britannica, T. Editors of Encyclopedia (2013). Ableism. Encyclopedia Britannica. https://www.britannica. com/topic/ableism
Brodhead, M. T., Quigley, S. P., & Wilczynski, S. M. (2018). A call for discussion about scope of competence in behavior analysis. Behavior Analysis in Practice, 11(4), 424-435.
Brosnan, J., & Healy, O. (2011). A review of behavioral interventions for the treatment of aggression in individuals with developmental disabilities. Research in Developmental Disabilities, 32(2), 437446.
Brown, L. X. Z. (2011). The significance of semantics: Person-first language: Why it matters. Autistic Hoya. https: / / www.autistichoya.com/2011/08/significanceof-semantics-person-first.html
Bury, S. M., Jellett, R., Spoor, J. R., & Hedley, D. (2020). "It defines who I am" or "It's something I have": What language do [autistic] Australian adults [on the autism spectrum] prefer? Journal of Autism and Developmental Disorders. https://doi. org/10.1007/s10803-020-04425-3
Carbone, V.J., O'Brien, L., Sweeney-Kerwin, E.J., & Albert, K. M. (2013). Teaching eye contact to children with autism: A conceptual analysis and single case study. Education and Treatment of Children, 36(2), 139-159.
Carter, S. L. (2010). The social validity manual: A guide to subjective evaluations of behavior interventions. Elsevier.
Center for Autism Research. (2020). Medical diagnosis vs. educational eligibility for special services: Important distinctions for those diagnosed with ASD. https:// www.carautismroadmap.org/medical-diagnosisvs-educational-eligibility-for-special-services-importantdistinctions-for-those-with-asd
Cividini-Motta, C., Moore, K., Fish, L. M., Priehs, J. C., & Ahearn, W. H. (2020). Reducing public masturbation in individuals with ASD: An assessment of response interruption procedures. BehaviorModification, 44(3), 429-448.
Collins, H. M., & Evans, R. (2002). The third wave of science studies: Studies of expertise and experience. Social Studies of Science, 32(2), 235-296.
Cook, J. L., & Rapp, J. T. (2020). To what extent do practitioners need to treat stereotypy during academic tasks? Behavior Modification, 44(2), 228-264.
Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied behavior analysis. Pearson.
Dawson, M., & Fletcher-Watson, S. (2021). When autism researchers disregard harms: A commentary. Autism, 26(2), 564-566.
Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129-36.
Farre, A., & Rapley, T. (2017). The new old (and old new) medical model: Four decades navigating the biomedical and psychosocial understandings of health and illness. Healthcare, 5(4), 88. https://doi.org/10.3390/healthcare5040088
Faville, A. (n.d.) A civil rights history: Americans with disabilities. https://knightpoliticalreporting.syr.edu/? civilhistoryessays=a-civil-rights-history-americans-withdisabilities
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 ofBehaviorAnalysis, 20(1), 146-157.
Fritscher, L. (2020, March 10). Medical model use in psychology. Verywellmind. https://www.verywellmind. com/medical-model-2671617
Gambrill, E. (2013). Birds of a feather: Applied behavior analysis and quality of life. Research on Social Work Practice, 23(2), 121-140.
George, K. (2018). What's the big deal with ABA therapy ? https://autisticmama.com/big-deal-aba-therapy/
Gernsbacher, M. A. (2017). Editorial perspective: The use of person-first language in scholarly writing may accentuate stigma. Journal ofChild Psychology and Psychiatry, 58(7), 859-861.
Ghaziuddin, M., & Greden,J. (1998). Depression in children with autism/pervasive developmental disorders; A case-control family history study. Journal of Autism and Developmental Disorders, 28, 111-115.
Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8, 438.
Gorycki, K. A., Ruppel, P. R., & Zane, T. (2020). Is long-term ABA therapy abusive: A response to Sandoval-Norton and Shkedy. Cogent Psychology, 7(1), 1823615.
Green, G. (1996). Early behavioral intervention for autism: What does research tell us? In C. Maurice, G. Green, & S.C. Luce (Eds.), Behavioral Intervention for young children with autism: A manual for parents and professionals (pp. 29-44). Pro-ED.
Griswold, N. (2021). Despite legislative directive, Medicaid-covered ABA therapy still not available for kids with autism in Texas. https://spectrumlocalnews.com/ tx/austin/news/2021/06/24/despite-legislativedirective-medicaid-covered-aba-therapy-still-notavailable-for-kids-with-autism-in-texas
Hehir, T. (2002). Eliminating ableism in education. Harvard Educational Review, 72 (1), 1-33.
Hendricks, D., Palko, S. & Dreyfus, A. (n.d.). Autism Q & A: What is applied behavior analysis? https:// vcurrtc.org/resources/viewContent.cfm/982
Hill-Chapman, C. R., Herzog, T. K., & Maduro, R. S. (2013). Aligning over the child: Parenting alliance mediates the association of autism spectrum disorder atypicality with parenting stress. Research in Developmental Disabilities, 34(5), 1498-1504.
Hyten, A. (2021, July 22). Resolution opposing applied behavior analysis (ABA). National Council on Independent Living. https://advocacymonitor.com/ncilresolution/resolution-opposing-applied-behavioralanalysis-aba/ #more-7865
Individuals with Disabilities Education Act, 20 U.S.C. 1400 (2004).
Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1), 20-30.
Jaswal, V. K., & Akhtar, N. (2019). Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism. Behavioral and Brain Sciences, 42.
Kapp S. K. (2020) Introduction. In: S. Kapp (Ed.) Autistic community and the neurodiversity movement. Palgrave Macmillan. https://doi.org/10.1007/978981-13-8437-0_1
Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). 'People should be allowed to do what they like': Autistic adults' views and experiences of stimming. Autism: The International Journal of Research and Practice, 23(7), 1782-1792.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462.
King, A.B. (Host). 2021,June, 21. On conflicts of interest in autism research: Interview with Kristen Bottem-Beutel and Micheal Sandbank [Audio podcast episode]. In Non-compliant - the podcast.
Kirkham, P. (2017). 'The line between intervention and abuse'-Autism and applied behaviour analysis. History of the Human Sciences, 30(2), 107-126. https://doi.org/10.1177/0952695117702571
Koegel, R. L., & Covert, A. (1972). The relationship of self-stimulation to learning in autistic children. Journal of Applied Behavior Analysis 5(4), 381-387.
Koegel, R. L., Firestone, P. B., Kramme, K W., & Dunlap, G. (1974). Increasing spontaneous play by suppressing self-stimulation in autistic children. Journal of Applied Behavior Analysis, 7(4). 521-528.
Koegel, R. L., & Koegel, L. K (1990). Extended reductions in stereotypic behavior of students with autism through a self-management treatment package. Journal ofApplied Behavior Analysis, 23(1), 119-127.
Koegel, L. K., Navab, A., Ashbaugh, K., & Koegel, R. L. (2016). Using reframing to reduce negative statements in social conversation for adults with autism spectrum disorder. Journal of Positive Behavior Interventions., 18(3), 133-144.
Krasny, L.,Williams, B. J., Provencal, S., & Ozonoff, S. (2003). Social skills interventions for the autism spectrum: Essential ingredients and a model curriculum. Child and Adolescent Psychiatric Clinics, 12(1), 107-122.
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19-29.
Lanovaz, M. J., Robertson, K M., Soerono, K., & Watkins, N. (2013). Effects of reducing stereotypy on other behaviors: A systematic review. Research in Autism Spectrum Disorders, 7(10), 1234-1243.
Lee, S., Odom, S. L., & Loftin, R. (2007). Social engagement with peers and stereotypic behavior of children with autism. Journal ofPositive Behavior Interventions, 9(2), 67-79.
Leaf,J.B. & Cihon, J. (Host). 2020, December 2. My experience with autism [Audio podcast episode]. It has to be said with Justin and Joe.
Leaf, J. B., Cihon, J. H., Leaf, R., McEachin, J., Liu, N., Russell, N., Unumb, L., Shapiro, S. & Khosrowshahi, D. (2021). Concerns about ABABased intervention: An evaluation and recommendations. Journal of Autism and Developmental Disorders, 52(6) 2838-2853.
Leaf, J. B., Dotson, W. H., Oppeneheim, M. L., Sheldon, J. B., & Sherman, J. A. (2010). The effectiveness of a group teaching interaction procedure for teaching social skills to young children with a pervasive developmental disorder. Research in Autism Spectrum Disorders, 4(2), 186-198.
Leaf, J. B., Leaf, R., McEachin, J., Taubman, M., Ala'i-Rosales, S., Ross, R. K., Smith, T, & Weiss, M. J. (2016). Applied behavior analysis is a science and, therefore, progressive. Journal ofAutism and Developmental Disorders, 46(2), 720-731.
Lightner, L. (2020). 39 Ableist microaggressions you might encounter at an IEP meeting. A day in our shoes. https://adayinourshoes.com/ableistmicroaggressions-iep-meeting/
Lindsley, O. R. (1991). From technical jargon to plain English for application. Journal of Applied BehaviorAnalysis, 24(3), 449.
Listen.Learn.Lead. (n.d.) Home. [Facebook page]. https://www.facebook.com/groups/2427520373943239
Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3.
Lovaas, O. I., Koegel, R., Simmons, J. Q., & Long, J. S. (1973). Some generalization and follow-up measures on autistic children in behavior therapy. Journal of Applied Behavior Analysis, 6(1), 131-165.
Lutz, A. S. F. (2021, February 3). Weaponizing "ableism" in the world of Autism: How this label is used to shut down accounts of severe autism and I/DD. Psychology Today. Retrieved on November 18, 2021 from https://www.psychologytoday. com/us/blog/inspectrum/202102/weaponizingableism-in-the-world-autism
Masataka, N. (2017). Implications of the idea of neurodiversity for understanding the origins of developmental disorders. Physics of Life Reviews, 20, 85-108.
Massachusetts Association for Applied Behavior Analysis Conference (2021).
McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 97(4), 359-732.
Medical Necessity Criteria: Outpatient Services Applied Behavior Analysis (ABA) (2021). Massachusetts Behavioral Health Partnership.
Mendelson, J. L., Gates, J. A., & Lerner, M. D. (2016). Friendship in school-age boys with autism spectrum disorders: A meta-analytic summary and developmental, process-based model. Psychological Bulletin, 142(6), 601.
Milton, D. (2018). A critique of the use of Applied Behavioural Analysis (ABA): On behalf of the Neurodiversity Manifesto Steering Group.
Murphy, G. (2009). Challenging behavior: A barrier to inclusion? Journal ofPolicy and Practice in IntellectualDisabilities, 6(2), 89-90.
Mundy, P., Sigman, M., & Kasari, C. (1990). Alongitudinal study of joint attention and language development in autistic children. Journal of Autism and Developmental Disorders, 20(1), 115-128.
National Center on Birth Defects and Developmental Disabilities. (2017). Communicating with and about people with disabilities. Retrieved from https:// www.cdc.gov/ncbddd/disabilityandhealth/pdf/ disabilityposter_visual_alt.pdf.
National Conference for Community and Justice (n. d.) Ableism. Retrieved on October 26th, 2021 from https://www.nccj.org/ableism?ltclid=
Ne'eman, A. (2018). Autism in the context of ableism:Culture, identity, and quality of life. Association of University Centers on Disabilities.
Ne'eman, A. (2013). Autism and the disability community: The politics of neurodiversity, causation and cure. Emory University. Transcript of talk published 2017 on Autistic Self-Advocacy Network, https://autisticadvocacy.org/2017/02/autism-andthe-disability-community-the-politics-of-neurodiversitycausation-and-cure/
Olley, J. G. (1999). Curriculum for students with autism. School Psychology Review, 28(4), 595-607.
O'Reilly, M., Sigafoos, J., Lancioni, G., Edrisinha, C., & Andrews, A. (2005). An examination of the effects of a classroom activity schedule on levels of self-injury and engagement for a child with severe autism. Journal of Autism and Developmental disorders, 35(3), 305-311.
Partners in Applied Behavior Analysis Conference (2021).
Pellicano, E., & Stears, M. (2011). Bridging autism, science and society: moving toward an ethically informed approach to autism research. Autism research, 4(4), 271-282.
Reese, R. M., Richman, D. M., Belmont, J. M., & Morse, P. (2005). Functional characteristics of disruptive behavior in developmentally disabled children with and without autism. Journal of Autism and Developmental Disorders, 35(4), 419-428.
Roeyers, H. (1996) The influence of nonhandicapped peers on the social interactions of children with a pervasive development disorder. Journal of Autism and Developmental Disorders, 26(3) 303-320.
Romanczyk, R. G., & Gillis,J. M. (2004). Treatment approaches for autism: Evaluating options and making informed choices. In Autism Spectrum Disorders (pp. 521-541). Routledge.
Rosales-Ruiz, J., & Baer, D. M. (1997). Behavioral cusps: A developmental and pragmatic concept for behavior analysis. Journal of Applied Behavior Analysis, 30(3), 533-544.
Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, 6(1), 1641258.
Ross R. (2021, May 14). Ethical behavior on social media: The importance of supporting science and combating misconceptions online [Conference presentation]. Massachusetts Association for Applied Behavior Analysis, United States.
Rubio, M., Lowery, D., & Everett, C. (Host). 2020, October 8. Criticisms of ABA (Season 1, Episode 7) [Audio podcast episode]. ABA on Tap.
Rudy, L. J. (2021). The spectrum of autism symptoms: Common and unusual symptoms of autism. Verywell health. Retrieved on4 November 13, 2021 from https://www.verywellhealth.com/the-spectrum-ofautism-symptoms-5094373
Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, 6(1), 1641258.
Sankar, T.R. (2021). The autistic's question. Neuroclastic. Retrived on November, 10, 2021 fromhttps:// neuroclastic.com/the-autistics-question/
Schlitz, H. K., McVey, A. J., McVey, A. J., Dolan, B. K., Willar, K. S., Pleiss, S., Karst, J. S., Carson, A. M., Caiozzo, C., Vogt, E. M., Yund, B. D., & Van Hecke, A V. (2017). Changing depressive symptoms among adolescents with ASD completing the PEERS® social skills intervention. Journal of Autism and Developmental Disorders, 48(3), 834-843.
Shute, N. (2010). Desperate for an autism cure. Scientific American, 303(4), 80-86.
Shyman, E. (2016). The reinforcement of ableism: Normality, the medical model of disability, and humanism in applied behavior analysis and ASD. Intellectual and Developmental Disabilities, 54(5), 366-376.
Silentlyspeakingvolumes (2020). Problematic and traumatic: Why nobody needs ABA. Retrieved September 26, 2021 from https://autisticselfadvocatesagainstaba.wordpress.com/2020/04/13/ problematic-and-traumatic-why-nobody-needs-aba/
Silva, D. P., & Fiske, K. E. (2021). Evaluating the effects of establishing eye contact on the skill acquisition of individuals with autism. Journal of Behavioral Education, 30(4), 708-723.
Singer, Judy (1999). "Why can't you be normal for once in your life?" From a 'problem with no name' to the emergence of a new category of difference". In corker, mairian; French, Sally (Eds.). Disability Discourse, 59-67. McGraw-Hill Education 59-67.
Sinclair J. Why I dislike person first language. Autonomy, the Critical Journal of Interdisciplinary Autism Studies. (2013)1(2). http://www.larry-arnold. net/Autonomy/index.php/autonomy/article/ view/OP1/html_1
Skinner, B. F. (1957). Verbal behavior. AppletonCentury-Crofts.
Stubbs, E. G., Lis, E. W., Mclaughlin, R. K., McLaughlin, I., & Lis, A. W. (1976). Profiles of ultraviolet-absorbing components of urine from autistic children, as obtained by high-resolution ion-exchange chromatography. Clinical Chemistry, 22(9), 1528-1532.
Sundberg, M. L. (2008). VB-MAPP Verbal Behavior Milestones Assessment and Placement Program: A language and social skills assessment program for children with autism or other developmental disabilities: Guide. Mark Sundberg.
Sundberg, M. L., & Michael, J. (2001). The benefits of Skinner's analysis of verbal behavior for children with autism. Behavior Modification, 25(5), 698-724.
Sundberg, M. L., & Partington, J. W. (1998). Teaching language to children with autism and other developmental disabilities. Behavior Analysts.
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, 123, 654-666.
Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5), 566-574.
Therapist Neurodiversity Collective. (n.d.) Home [Facebook page]. https://www.facebook.com/ NeurodiversityCollective/photos/?ref=page_internal
Varni, J. W., Lovaas, O. I., Koegel, R. L., & Everett, N. L. (1979). An analysis of observational learning in autistic and normal children. Journal of Abnormal ChildPsychology, 7(1), 31-43.
Wachtel, L. E. (2020). Death by severe autism. https:// www.ncsautism.org/blog//death-by-severe-autism
Wade, D., & Halligan, P. (2017). The biopsychosocial model of illness: A model whose time has come. Clinical Rehabilitation, 31(8), 995-1004.
Walker, N. (2014). Neurodiversity: Some basic terms & definitions. Neuroqueer https://neuroqueer.com/ neurodiversity-terms-and-definitions/.
Weiss, M. J., & Harris, S. L. (2001). Teaching social skills to people with autism. Behavior Modification, 25(5), 785-802.
Wolbring, G. (2004). Solutions follow perceptions: NBIC and the concept of health medicine, disability, and disease. Health LawReview, 12(3) 41-46.
Wolf, M. M. (1978). Social validity: The case for subjective measurement or how applied behavior analysis is finding its heart 1. Journal of Applied Behavior Analysis, 11(2), 203-214.
Z. E., P. S., & Newman, J. (Host). 2021, September, 17. Take Back the Task Force (No. 43) [Audio podcast episode]. Hops and Hooves: Humanity Podcast.
Received: 7 June 2022
Initial Acceptance: 8 August 2022
Final Acceptance: 16 September 2022
Copyright Division on Autism and Developmental Disabilities Jun 2023