(Please note: This piece, on 7/18/22, while vetted, peer-reviewed, and edited, remains a draft. I felt it important to get it to point where I am comfortable with you having it even though it hasn’t been externally verified/validated by a governing body or recognized publication.)
First, a few words about plain language, in plain language.
I struggle with writing in plain language.
Plain language allows more people to access information. It is more inclusive.
Plain language, however, is not the language of universities, doctors, clinicians, or many other professionals.
Plain language reaches more people. However, the ideas communicated in plain language are very often ignored and even belittled by people and institutions with the biggest names, the greatest popularity, the most money and political power.
There is a constant struggle, then. It’s like a three-part balance which can feel more like a tug-o-war. On one arm? The people with the power: funders, publishers, and politicians. On the second? The people doing the work: teachers, therapists, physicians, clinicians, and caregivers. And third? The people impacted by the work. Those who are served: patients, clients, students, consumers, and children.
Workers who want to say important things in support of those who are served must have the right credentials to be allowed to speak AND be heard. They must speak the language of power-brokers and follow the rules set by those with money and influence. And those who are served? They rarely have a say in the ways they are treated. In the case of children, I’m certain it’s exceptionally rare.
I am a worker, what I refer to as a “perceived expert,” or PE, in certain aspects of my life. I am also a person served, what I refer to as a “perceived novice,” or PN, in other ways. Finally, I have enough privilege and resources which provide me with a voice of some influence. Or power. And so I shall use it. Here, then, are two assertions:
- Applied behavior analysis (ABA) should not be used with Autistic people, especially children.
- ABA should not be used with any person, especially children.
I will attempt to communicate my justification for these statements simply and plainly, using a question-and-answer format. We have to start with Applied Behavior Analysis, or ABA.
How common is ABA?
The principles of ABA are the most recommended and used treatment for autistic children (Hymen, et al., 2020, Reichow, et al., 2018, Sandbank, et al., 2020, Sandbank, et al., 2021, Weitlauf, et al., 2014). Also, ABA is now very often used with non-autistic children with social, emotional, sensory, and behavioral difficulties. A search of the internet shows that organizations and states are using ABA not only with autistic children, but also children with attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), anxiety, substance abuse, dementia and cognitive impairments, and even post-traumatic stress disorder (PTSD). The Commonwealth of Pennsylvania now recommends ABA and the principles of ABA for any child under the age of 21 with, “…mental, emotional and behavioral health needs.” (Houser, 2020). Any child.
What is ABA?
ABA therapies identify and use what are called “reinforcements” and “punishments” in a perceived novice’s (PN’s) environment to shape their behavior. Perceived experts (PEs), using principles of ABA, create programs that reward PN behaviors deemed good, appropriate, and/or desired; and punish PN behaviors deemed bad, inappropriate, and/or undesired. The idea is that rewarded behaviors will increase and punished behaviors will decrease. The website, “ABA Degree Programs,” offers an article, “What is Applied Behavior Analysis in Simple Terms?” if you want to read a lengthier explanation in simple terms (Link), keeping in mind this article is written by entities profiting from ABA. Wikipedia also offers a very comprehensive and researched article on “Applied behavior analysis,” and though this article is not in plain language (Link), it is a more balanced exploration without obvious conflicts of interest.
What do we know about the brains of Autistic children?
Recent evidence points to unusual amygdala growth in the brains of children between 6 – 12 months of age who go on to have Autism (Shen, et al., 2022). The growth of that structure, the amygdala, seems to be connected to other brain changes that lead, at least in part, to Autism.
What is the amygdala?
The amygdala’s main job is regulating emotions as sensory information enters the brain from the eyes, ears (hearing and balance), nose, mouth and tongue, skin, and joints (Guy-Evans, 2021). The amygdala, which is a part of the limbic system, controls the fight-or-flight nervous system if there is a sense of threat or danger. It also ties memories with emotions so humans can make more immediate decisions when faced with new things. The amygdala helps not only to sense danger, but also to connect experiences and memories to emotions so that we can predict and recognize safe and unsafe people, places, and things. An enlarged amygdala is connected with increased anxiety (Bergeron, 2013) and the development of social deficits (Shen, et al., 2022). People with Autism and extreme sensitivities to sensory information also show enlarged amygdala (Green, et al., 2015).
Are there any other related differences of note?
Yes. Researchers found that connections between the thalamus, “…a deep brain structure crucial for sensory and motor functions, and the cerebral cortex, the brain’s outer layer, is impaired in children with autism spectrum disorders.” (San Diego State University, 2013) Also, Woodward and colleagues (2017) found that, “thalamocortical networks are abnormal in autism spectrum disorder.” The word “thalamocortical” refers to the connections between the thalamus (“thalamo”) and the cortex (“cortical”). The cortex is the largest portion of the brain and is responsible for information processing, decision-making, and overall bodily control.
So…what can we say about the brains of Autistic people and children?
We know that the brains of the Autistic people are structurally and functionally different than non-Autistic brains. We also know that several of these brain differences leave Autistic children more vulnerable to fear, anxiety, misperceiving threat or harm, and sensory overwhelm.
What does the research say about the most common therapies used with Autistic children and people?
Let’s now turn to two recent large-scale reviews of all available, published, peer-reviewed research related to the principles of ABA.
First, The Cochrane library updated a systematic review of early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). EIBIs use principles of applied behavior analysis (ABA) delivered across years at an intensity of 20 – 40 hours per week and are commonly recommended for autistic children. The Cochrane review, “…found weak evidence that children receiving the EIBI treatment performed better than children in the comparison groups after about two years of treatment on scales of adaptive behavior, intelligence tests, expressive language (spoken language), and receptive language (the ability to understand what is said). Differences were not found for the severity of autism symptoms or a child’s problem behavior.” (Reichow, et al., 2018)
Next, Project AIM, or the Autism Intervention Meta-Analysis for Studies of Young Children is a comprehensive review and analysis of all available non-drug studies for early intervention with Autistic children. Project AIM found that when they excluded research that was not of a high enough quality to allow us to be very confident in the results, “…no intervention types showed significant effects on any outcome.” (Sandbank, et al., 2020)
The Project AIM group commented further on the website: www.spectrumnews.org. Please note, since the upcoming quote is not entirely in plain language, I will add italics in parentheses (italics in parentheses) to clarify language. “Altogether, our analyses revealed three ethical problems: Most studies are poorly designed, fail to disclose COIs (conflicts of interest) and lack attention to adverse (harmful) outcomes. Disclosing COIs (conflicts of interest) and taking steps to mitigate (to make less severe) the biases they may introduce will lead to better-quality research and instill greater trust from the autism community. Proactively measuring and reporting adverse (harmful) outcomes will enable families to adequately weigh the potential benefits of interventions against any potential negative consequences.” (Bottema-Beutel, et al., 2020)
This prompted the Project AIM group to publish a piece in the journal Pediatrics to add important information beyond the recommendations by Hymen, et al., in 2020, with their guidance-report for all pediatricians, called, “Identification, Evaluation, and Management of Children with Autism Spectrum Disorder.” The Project AIM team insists, “Given the current lack of conclusive (very good) evidence to support recommendations for very intense interventions for young children with autism, clinicians should eschew (avoid) standard intensity recommendations (what we generally recommend) and instead individualize recommendations based on perceived child needs and family priorities.” (Sandbank, et al., 2021) The authors also note that highly intensive interventions could lead to increased child and family stress as well as negative developmental and social consequences.
What do we know about people who receive intensive ABA? Are their voices and experiences represented in the evidence base?
Very little published research exists regarding the experiences of the children and people receiving ABA. Treatment success or impact is almost always measured, reported, and controlled by how perceived novices (PNs) score on standardized tests and behavioral checklists. That is, it depends fully upon the opinions, observations, and measurements of perceived experts (PEs). Of critical note here is a finding by the Project AIM group, which indicated that, “70 percent of studies were co-authored by a researcher with a conflict of interest, which we defined as any situation in which a person holds a vested (has a money) interest that might bias a study’s outcome.” (Sandbank, et al., 2020) So, not only are the voices of autistic people very under-represented. They are further under-valued as PEs stand to gain more power and money from what they find and publish in their research.
What research do we have?
At the very least, we have two published studies by Henny Kupferstein, from 2018 and 2019, and also a paper published in 2021 by the Autism Self Advocacy Network titled, “For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions.”
Both of the Kupferstein articles include research decisions that bring bias. Kupferstein, who is Autistic and also the parent of Autistic children, used what are called “non-validated surveys” and found people in online forums with many autistic people. She also recruited families who stopped using applied behavior analysis (ABA). It could reasonably be argued that a study by an Autistic parent of Autistic children, who is also a self-employed researcher and clinician, seeking information based on the experiences of Autistic people, would predictably get anti-ABA results. This, however, does NOT invalidate the data. Rather, it requires that we understand the bias and remain careful and honest as we make conclusions. Kupferstein, in attempting to capture evidence of the impacts of ABA on Autistic people who received ABA, needed to collect data from Autistic people who received ABA.
What did Kupferstein learn?
The opinions expressed by self-described Autistic people and families who received and/or used ABA revealed that symptoms of post-traumatic stress disorder were quite common. (Kupferstein, 2018 & 2019) Also, people who receive little or no ABA therapies across their lifetimes reported fewer post-traumatic stress symptoms. (Kupferstein, 2019)
What do other Autistic people have to say?
The Autism Self Advocacy Network (ASAN) is a grassroots disability rights organization run by and for Autistic people. On their website, ASAN states, “The Autistic Self Advocacy Network (ASAN) seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!” (ASAN, n.d.)
It’s important to understand how Autistic people are under-represented at conferences and across what is known in advocacy and disability-studies circles as, “The Autism Industrial Complex (AIC).” (Broderick & Rascigno, 2021) The AIC framing allows us to see profit motivations across perceived experts (PEs) attempting to cure Autism or make autistic people appear less-autistic in public spaces. PEs often apply therapies without autistic people’s consent or consideration of autistic people’s feelings, experiences, or desires. ASAN is an important voice from this perspective and must be included, at the very least.
ASAN closes its exploration of the evidence, ethics, and effectiveness of autism interventions with this, “We emphasize that more, and better-quality research, is needed. Our work researching and writing this paper was plagued by the low-quality research literature available, research that subjected autistic people to unethical interventions against their will, and research whose results could not be replicated in subsequent trials. The vast majority of scholarly research into autism interventions excludes autistic people from its research team. We encourage researchers to adopt a framework of community-based participatory research (CBPR) and to ground their research ethics in the writings of autistic people, scholarly or not, on the ethics of autism intervention. Creating truly ethical, meaningful, and helpful autism therapies and services cannot be possible without the involvement of autistic people of all ages and backgrounds at all levels of intervention development and testing.” (ASAN, 2020)
Altogether, what do we know?
First, we know that the principles of applied behavior analysis (ABA) are paradigmatic. That is, ABA is the most common underlying approach to interventions with autistic children. Also, interventions with non-autistic children who do not comply or assimilate easily to perceived expert (PE) demands often and increasingly receive ABA-based therapies.
We also know that the research base is weak, at best, regarding the use of intensive ABA approaches with autistic children. Children who receive intensive behavioral interventions are reported to score somewhat better on IQ tests and other standardized measures of adaptive behaviors and language. However, when high standards of research are considered, these improvements are not present. Keep in mind also that standardized scores do not reflect a person’s actual functioning in real-life situations.
Also, no results point in the direction of ABA reducing autistic traits (i.e. making a child appear less autistic to non-autistic observers) or what mainstream professionals call, “problematic behaviors,” such as repetitive movements, escape tactics, non-compliance, and/or disruptive responses to PE inputs.
We know the autistic brain is different than the non-autistic brain. The amygdala and thalamus-to-cortex difference suggest that autistic brains are more vulnerable to fear, anxiety, threat detection challenges, and sensory processing sensitivities.
We know that a subset of self-described autistic people describe trauma experiences and post-traumatic stress symptoms after having been exposed to intensive ABA.
And what does this all mean?
Any therapy given to people with brain differences impacting sensory processing, the fight-or-flight nervous system, and/or the limbic system must be seriously considered. The limbic system includes the thalamus, amygdala, and other structures. The limbic system, overall, regulates and processes sensory inputs, emotions, and plays a major role in the creation of memories.
Even the most impressive evidence in favor of intensive applied behavior analysis (ABA) and related principles is weak, biased, and often contains conflicts of interest along with avoidance of considering possible harm.
ABA-treated autistic people who are platformed and whose voices are amplified say they have post-traumatic stress symptoms, if not disorders, at high rates.
That piece of evidence should be enough to at the very least consider my first assertion. Which is: ABA should not be used with Autistic people, especially children.
What about ABA for non-Autistic people, including children?
To that I ask a question in return.
Why would one use life-altering techniques, with weak to non-existent evidence of benefit, that also cause increased PTSS in impacted autistic people, on anyone?
What might we otherwise do?
First, we must offer frameworks of care that genuinely regard our impacts on perceived novices (PN). Frameworks that are trauma-informed and PN-centered. Frameworks that can be studied and used with a greater confidence that we are not harming people. Especially children.
Also, we must continue to regard what autistic, neurodiverse, and ABA-impacted people tell us about their lived experiences with our therapies.
And we should stop using ABA.
And…we should consider all of the ABA evidence available so that it is no longer necessarily the paradigm. No longer necessarily the most common thing. No longer necessarily accepted as THE best practice.
And the only way to do that is to stop using it for a moment and consider other ways. Humane, inclusive, impact-regarding ways that respect and compliment the actual brain differences, the social and emotional experiences, of PNs.
In upcoming articles and chapters, I will explore therapy and teaching alternatives and think about a new framework of helping others that sincerely thinks about impact and empowerment.
For now, I will leave you with a quote from Carl Rogers, an influential psychologist and teacher. Rogers is the founder of person-centered therapy and his counseling and teaching techniques inform my framework and practices quite a bit. “Experience is, for me, the highest authority. The touchstone of validity is my own experience. No other person’s ideas, and none of my own ideas, are as authoritative as my experience.” (Rogers, p. 23)
References:
ABA Degree Programs (n.d.) What is applied behavior analysis in simple terms? From https://www.abadegreeprograms.net/faq/what-is-applied-behavior-analysis-in-simple-terms/
American Psychological Association. (n.d.) APA Dictionary of Psychology. Retrieved 4/10/22. From https://dictionary.apa.org/applied-behavior-analysis
American Psychological Association. (n.d.) APA Dictionary of Psychology. Retrieved 4/10/22. From https://dictionary.apa.org/behavior-analysis
American Psychological Association. (n.d.) APA Dictionary of Psychology. Retrieved 4/10/22. From https://dictionary.apa.org/behavior-therapy
Applied Behavior Analysis. (n.d.). In Wikipedia. Retrieved April 11, 2022. From https://en.wikipedia.org/wiki/Applied_behavior_analysis
Autism Self Advocacy Network (2021, December 6) For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions. From https://autisticadvocacy.org/policy/briefs/intervention-ethics/
Autism Self Advocacy Network (n.d.) Our Mission. From https://autisticadvocacy.org/about-asan/
Bergeron, L. (2013, November 11). Size, connectivity of brain region linked to anxiety level in young children, study shows. Stanford Medicine News Center. From https://med.stanford.edu/news/all-news/2013/11/size-connectivity-of-brain-region-linked-to-anxiety-level-in-young-children-study-shows.html
Bottema-Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. (2020, November 24). Errors of omission: Why we are deeply concerned about research on autism therapies. From https://www.spectrumnews.org/opinion/errors-of-omission-why-we-are-deeply-concerned-about-research-on-autism-therapies/
Broderick, Alicia & Roscigno, Robin. (2021). Autism, Inc.: The Autism Industrial Complex. Journal of Disability Studies in Education. 1-25. 10.1163/25888803-bja10008.
Green, S. A., Hernandez, L., Tottenham, N., Krasileva, K., Bookheimer, S. Y., & Dapretto, M. (2015). Neurobiology of Sensory Overresponsivity in Youth With Autism Spectrum Disorders. JAMA psychiatry, 72(8), 778–786. From https://doi.org/10.1001/jamapsychiatry.2015.0737
Guy-Evans, O. (2021, May 09). Amygdala function and location. Simply Psychology. From www.simplypsychology.org/amygdala.html
Houser, K. Pennsylvania Department of Human Services. (2020) Medical Necessity Guidelines for Intensive Behavioral Health Services. (Report Number OMHSAS-20-05) Office of Mental Health and Substance Abuse Services Bulletin. From https://www.dhs.pa.gov/HealthChoices/HC-Providers/Pages/BHProvider-IBHS.aspx
Hyman SL, Levy SE, Myers SM, AAP COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS. Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Pediatrics. 2020;145(1):e20193447
Kupferstein, Henny. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism. 4. 00-00. 10.1108/AIA-08-2017-0016.
Kupferstein, Henny. (2019). Why caregivers discontinue applied behavior analysis (ABA) and choose communication-based autism interventions. Advances in Autism. ahead-of-print. 10.1108/AIA-02-2019-0004.
Reichow B, Hume K, Barton EE, Boyd BA. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews 2018, Issue 5. Art. No.: CD009260. DOI: 10.1002/14651858.CD009260.pub3.
Rogers, C. R. (1995). On becoming a person (2nd ed.). Houghton Mifflin (Trade).
Sandbank M, Bottema-Beutel K, Woynaroski T. Intervention Recommendations for Children With Autism in Light of a Changing Evidence Base. JAMA Pediatr. 2021;175(4):341–342. doi:10.1001/jamapediatrics.2020.4730
Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., … & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1.
San Diego State University. (2013, June 25). Autism in children affects not only social abilities, but also a broad range of sensory and motor skills. ScienceDaily. Retrieved April 12, 2022 from www.sciencedaily.com/releases/2013/06/130625141216.htm
Shen, M. D., Swanson, M. R., Wolff, J. J., Elison, J. T., Girault, J. B., Kim, S. H., Smith, R. G., Graves, M. M., Weisenfeld, L. A. H., Flake, L., MacIntyre, L., Gross, J. L., Burrows, C. A., Fonov, V. S., Collins, D. L., Evans, A. C., Gerig, G., McKinstry, R. C., Pandey, J., . . . Piven, J. (2022). Subcortical Brain Development in Autism and Fragile X Syndrome: Evidence for Dynamic, Age- and Disorder-Specific Trajectories in Infancy. American Journal of Psychiatry. https://doi.org/10.1176/appi.ajp.21090896
Weitlauf AS, McPheeters ML, Peters B, Sathe N, Travis R, Aiello R, Williamson E, Veenstra-VanderWeele J, Krishnaswami S, Jerome R, Warren Z. Therapies for Children With Autism Spectrum Disorder: Behavioral Interventions Update. Comparative Effectiveness Review No. 137. (Prepared by the Vanderbilt Evidence-based Practice Center under Contract No. 290-2012-00009-I.) AHRQ Publication No. 14-EHC036-EF. Rockville, MD: Agency for Healthcare Research and Quality; August 2014.
Woodward, N. D., Giraldo-Chica, M., Rogers, B., & Cascio, C. J. (2017). Thalamocortical dysconnectivity in autism spectrum disorder: An analysis of the Autism Brain Imaging Data Exchange. Biological psychiatry. Cognitive neuroscience and neuroimaging, 2(1), 76–84. https://doi.org/10.1016/j.bpsc.2016.09.002
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