ASD, Neurodiversity, Advocacy, and Behavior Analysis: What can we take away from the overlap among these topics?

By John Wills Lloyd, PhD
University of Virginia & Special EducationToday.com

In this essay, I provide a brief and not-too-scholarly recounting of overlaps in the history of behavior analysis, autism, and neurodiversity. I don’t pretend that these recountings of my memories are definitive, but I provide them because I think discussion of how they can and should influence special education practice is merited. Let’s start back in the 60s which, though it may surprise a few readers, I remember pretty well.

In the 1960s, when applied behavior analysis was pretty much unknown and children with autism were quite rare, it was those rare individual students with whom behavior analysts first had opportunities to work. Early advocates of behavior analysis (e.g., Lindsley, 1964) made provocative recommendations about modifying the environments of children with disabilities (see “Students don’t have disabilities”) and researchers (Ferster, 1964; Ferster & DeMyer, 1961, 1962; Foxx & Azrin, 1973; Wolf et al., 1963) documented the effects of using operant procedures to change environments and, thereby, the behavior of children with autism and related problems.

These applications of behavioral principles to clinical situations represented substantial changes in approaches to disabilities, including autism at that time. The behavioral approaches appeared in the context of psychodynamic theories that focused on psychogenic factors in children’s environments, such as Bettleheim’s (1967) largely discredited argument that “refrigerator mothers” played a strong role in children’s autism. Coupled with dissatisfaction with play therapy and other traditional forms of psychotherapy, there was fertile ground for change in methods of treating children with autism and related disabilities (e.g., Davids, 1975).

Early developments in autism

Some of the early applications of behavioral principles were probably a bit ham-fisted. The practices were jokingly called “M&M Therapy” because we provided tiny bits of food (Frosted Flakes!) following appropriate behaviors. We wanted to increase the frequency of those appropriate behaviors so we reinforced them. We wanted to decrease the frequency of problem behaviors, so we used sophisticated schedules of reinforcement to, for example, increase the time between misbehavior such as self-injury. We even investigated punishing serious problems like self-injury.

It turned out that many of those practices, often associated with the work of Ivar Lovaas (e.g., Lovaas et al., 1971), were successful in addressing the serious problems of communication, social interaction, and other issues that children with autism displayed. It wasn’t too long, though, before some behavior analysts realized that some of the behaviors about which we were concerned might have functions. That is, the behavior a child displayed might have effects such as turning off an environmental condition (e.g., demands to perform a task), turning on an environmental condition (e.g., consoling hugs), etc.

Researchers such as Ted Carr (1977) promoted examining the “motivation for self-injurious behavior.” Others such as Brian Iwata and colleagues (e.g., Iwata et al., 1982) followed with functional behavior analysis. Behaviorists discovered that they could identify the causes of behavior, not the remote, hidden, intrapsychic causes, but the environmental conditions that caused behavior. There was an intellectual sea change from behavior modification to behavior analysis.

Growth in prevalence and availability of services

Meanwhile, there were two important developments. First, there were dramatic increases in the numbers of individuals identified as having autism. What had been a rare diagnosis in the 1960s and 70s became much more common in the 1990s, 2000s, and later (Fombonne, 2021; Fombonne et al., 2021). In 2000, the rate of autism was 1 in 150; in 2008 it was 1 in 88; in 2017 it was 1 in 68; in 2020 it was 1 in 36 (see Centers for Disease Control and Prevention, Data and Statistics on Autism Spectrum Disorder).

Second, there was a concomitant development in the provision of services. Increasing prevalence created demand for behaviorally-based therapies. Providers who knew enough about behavioral practices—often practices predicated on the discrete trials method employed by Lovaas and colleagues—offered to implement those methods with children in homes and schools. Reputable providers secured training from programs that conformed to standards promoted by the Behavior Analyst Certification Board. They developed businesses that employed behavioral training procedures and could be reimbursed by insurance providers.

In just a decade or so, an entire industry appeared. Providers established centers and then expanded their service areas by creating franchises. They employed clinicians with less extensive preparation (Board Certified Assistant Behavior Analysts and Registered Behavior Technicians) to work with Board Certified Behavior Analysts in delivering services to the increasing numbers of children with autism (and similar developmental disabilities) and their families. Growth in the availability of behaviorally-based service providers helped meet the increasing need that resulted from more frequent diagnoses of ASD and related conditions.

Neurodiversity and self-advocacy

Increases in prevalence may have been in part a consequence of a broader definition of autism. Some children identified as having autism—perhaps they might be identified as having high functioning autism—did not have as many problems and their problems were not as severe as those children identified in the 1960s.

Some individuals identified as having autism had few communication problems; in fact, they could speak and write quite well. Some of the people identified as having autism saw themselves differently than how they thought the larger world, and especially traditional autism service providers, saw them. They formed part of an international movement that became identified with the term “neurodiversity.” The idea grew markedly in the later 2010s, as shown in the accompanying graph of terms used in searches for Internet information.

Neurodivergent people reported that the behaviors subject to therapy were not actually problems. They reported that they were actually just fine, only different. They—and their allies—argued that they had neurological structures and functions that were not typical, but were not wrong. Those differences were not deficits and didn’t necessarily deserve to be changed.

Advocates of the neurodiversity movement promoted the idea that individuals with autism (and other conditions) were, at base, just people. But they argued that using the term “autistic person” wasn’t derogatory and was, in fact, preferable to “person with autism.” They said they deserved to have their opinions heard and respected, to be free of ableism, to have their strengths recognized, and more. They deserved to be included.

Some members of the neurodiversity community criticized behavior analysis. They contended that it was an extension of the medical model, a model based on treating diseases. Autism, they said, is not a disease. It is just part of natural variation in neural form and function. Rather than being the subject of a treatment plan, they would like to influence the plan, at the least, and reject it completely, at the most.

Press coverage

Newspapers, news magazines, and other publications have covered the neurodivergence movement. The Guardian carried “Wired differently: how neurodiversity adds new skillsets to the workplace.” In its general interest reporting, Nature published “How science can do better for neurodivergent people.” Psychology Today had a column on the topic, “Neurodivergence in Adulthood: The Case of the Undiagnosed: The misunderstood relationship between ADHD and autism in adults.” Readers may find each of these of interest.

Articles that appear in The New Yorker are likely to be read by many people. With a circulation of greater than 1.25 million subscribers, many writers would so like to publish in it that they might give a body part or two for the honor. It’s not just a source for wonderful cartoons—including those by Liza Donnelly that I especially enjoy—but also for excellent poems, serious long-form journalism, thoughtful socio-political observations, and more.

I took note when an article on neurodivergence appeared in The New Yorker. One such article appeared 12 February 2024. Jessica Winter published “The Argument Over a Long-Standing Autism Intervention: Applied Behavior Analysis therapy has a troubling history, and even many supporters say it was used too widely in the past. But has criticism of the practice gone too far?”

I wondered, “Is this another take-down job by someone asserting that she was harmed by therapy associated with applied behavior analysis?” I thought, “What was with the phrase in the subtitle, ‘criticism…gone too far?’” “Is Ms. Winter going to champion the arguments of self-advocates who deride ABA as sterile and demeaning? Will she even give beneficial outcomes a chance?”

Well, the answers to my questions seem to be “yes” and “yes.” She covered a lot in her article. It is a popular press article, so it is heavy on the first-person experiences of people who experienced ABA. It is not a scientific review, so I think it’s important not to hold it to standards associated with academic research. But she does entertain different perspectives, consistent with the both-sides bent of contemporary journalism.

Beyond the specific content of Ms. Winter’s article, I think there is a larger issue looming. What should special educators, behavior analysts, and other clinicians make of the tension between beneficial practices that have grown from behavior analysis and the reservations expressed by the neurodivergent community about ABA?

Comments

Is it a good idea to hunker down and ignore the protestations of advocates of the neurodivergence community? After all, isn’t there lots of evidence that behavior analytic procedures are effective, beneficial, and acceptable (Foxx, 2006; Makrygianni et al., 2018; Roane et al., 2016)? Don’t kids and their families have a right to effective treatments (Van Houten et al., 1988)?

Yes, and…there are things we can learn from listening to the arguments of advocates from the neurodivergence community. Here are a few:

• • First among these is to understand that those of us who employ practices, procedures, and methods from ABA research must take a good dose of humility. We are not going to be the saviors of kids and families. We won’t make autism disappear. We may have marked successes, but most of us know that when these kids grow up, even into successful adulthood, they’re not going to be “normal”; they’ll still have quirks, foibles, mannerisms, and similar “issues.” That’s OK!
  • It’s also important that we communicate clearly and honestly. Not only should we not pretend that we can make kids normal, we need to be up front about the level of commitment that treatment often requires, the goals we have, and the procedures we’re expecting to use. Do the participants in the program agree with the goals and procedures? It may take scores of hours to achieve small improvements; let’s not tell people otherwise. And if this comment reminds someone of social validity, good; we need to employ socially validated practices and to examine social validity of our own efforts (Callahan et al., 2017).
  • We need to support efforts to refine behavior analytic procedures. It will be valuable to learn how much of a dose of a particular program is needed to reach critical levels of benefit. And it will be important to implement practices faithfully (Strain et al., 2021).
  • We surely need to practice therapies ethically (regardless of theoretical orientation on which they are based). The BACB has valuable guidance on ethical practice of ABA. But we need to understand that slips in ethical practice (e.g., faulty billing; see “U.S. Health agency plans audit of payments for autism services”) provide fodder for rejecting not just the bathwater but also the baby.

We may not need to move as strongly as some commentators (e.g., Mathur et al, 2024) have recommended, but we surely should listen to recommendations respectfully and reflect on those recommendations. There are surely some things we can learn by examining our practices dispassionately and from the perspectives of others. We might just be able to provide better services.

References

Bettleheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. Free Press.

Callahan, K., Hughes, H. L., Mehta, S., Toussaint, K. A., Nichols, S. M., Ma, P. S., Kutlu, M., & Wang, H. T. (2017). Social validity of evidence-based practices and emerging interventions in autism. Focus on Autism and Other Developmental Disabilities, 32(3), 188-197. https://doi.org/10.1177/1088357616632446

Carr, E. G. (1977). The motivation of self-injurious behavior: A review of some hypotheses. Psychological Bulletin, 84(4), 800.

Davids, A. (1975). Therapeutic approaches to children in residential treatment: Changes from the mid-1950s to the mid-1970s. American Psychologist, 30(8), 809-814. https://psycnet.apa.org/doi/10.1037/h0077134

Ferster, C. B. (1964). Positive reinforcement and behavioral deficits of autistic children. In C. M. Franks (Ed.) Conditioning techniques in clinical practice and research. Springer. https://doi.org/10.1007/978-3-662-39876-0_23

Ferster, C. B., & DeMyer, M. K. (1961). The development of performances in autistic children in an automatically controlled environment. Journal of Chronic Diseases, 13(4), 312-345. https://doi.org/10.1016/0021-9681(61)90059-5

Ferster, C. B., & DeMyer, M. K. (1962). A method for the experimental analysis of the behavior of autistic children. American Journal of Orthopsychiatry, 32(1), 89-98. https://psycnet.apa.org/doi/10.1111/j.1939-0025.1962.tb00267.x

Foxx, R. M. (2008). Applied behavior analysis treatment of autism: The state of the art. Child and Adolescent Psychiatric Clinics of North America, 17(4), 821-834. https://doi.org/10.1016/j.chc.2008.06.007

Foxx, R. M., & Azrin, N. H. (1973). The elimination of autistic self‐stimulatory behavior by overcorrection. Journal of Applied Behavior Analysis, 6(1), 1-14.

Fombonne, E. (2003). The prevalence of autism. Journal of the American Medical Association, 289(1), 87-89.

Fombonne, E., MacFarlane, H., & Salem, A.C. (2021). Epidemiological surveys of ASD: Advances and remaining challenges. Journal of Autism and Developmental Disorders, 51, 4271–4290. https://doi.org/10.1007/s10803-021-05005-9

Iwata, B. A., Dorsey, M. F., Slifer, K. J., Bauman, K. E., & Richman, G. S. (1982). Toward a functional analysis of self-injury. Analysis and Intervention in Developmental Disabilities, 2(1), 3-20.

Lindsley, O. R. (1964). Direct measurement and prosthesis of retarded behavior. Journal of Education, 147(1), 62-81. https://journals.sagepub.com/doi/pdf/10.1177/002205746414700107

Lovaas, O. I., Schreibman, L., Koegel, R., & Rehm, R. (1971). Selective responding by autistic children to multiple sensory input. Journal of Abnormal Psychology, 77(3), 211-222. https://psycnet.apa.org/doi/10.1037/h0031015

Makrygianni, M. K., Gena, A., Katoudi, S., & Galanis, P. (2018). The effectiveness of applied behavior analytic interventions for children with Autism Spectrum Disorder: A meta-analytic study. Research in Autism Spectrum Disorders, 51, 18-31. https://doi.org/10.1016/j.rasd.2018.03.006

Mathur, S. K., Renz, E. & Tarbox, J. (2024). Affirming neurodiversity within applied behavior analysis. Behavior Analysis in Practice. https://doi.org/10.1007/s40617-024-00907-3

Roane, H. S., Fisher, W. W., & Carr, J. E. (2016). Applied behavior analysis as treatment for autism spectrum disorder. The Journal of Pediatrics, 175, 27-32.

Strain, P., Fox, L., & Barton, E. E. (2021). On expanding the definition and use of procedural fidelity. Research and Practice for Persons with Severe Disabilities, 46(3), 173-183. https://doi.org/10.1177/15407969211036911

Van Houten, R., Axelrod, S., Bailey, J. S., Favell, J. E., Foxx, R. M. Iwata, B. A., & Lovaas, O. I. (1988). The right to effective behavioral treatment. Journal of Applied Behavior Analysis, 21(4), 381-384. https://doi.org/10.1901/jaba.1988.21-381

Wolf, M., Risley, R., & Mees, H. (1963). Application of operant conditioning procedures to the behavior problems of an autistic child. Behaviour Research and Therapy, 1(2–4), 305-312. https://doi.org/10.1016/0005-7967(63)90045-7

This essay is reprinted from Special Education Today by John Wills Lloyd for 27 February 2024. SET is a reader-supported publication. To learn more about SET, please see here.

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