An Open Letter to the NYT: Acknowledge the Controversy Surrounding ABA

As an ABA survivor, I’m disappointed by the New York Times’s recent decision to publish a biased article lauding the necessity and merits of ABA Therapy, or Applied Behavioral Analysis, for autistic children.

Within the autistic community, ABA is seen as one of the largest, if not the largest, controversies. It has a dark and deeply unethical past, as well as a highly ethically-questionable present and future. I want to share with you what I survived in ABA, but first I will resurrect the Ghost of ABA past…

The Past:

Before we talk about the history of ABA, I’d like to disclose my past history with it and admit my personal bias. I don’t think it weakens my argument in this case.

They used food deprivation in my program and they made us pair up and do it to each other. I feel incredible guilt over this.

Every morning I’d cut up a peanut butter and jelly sandwich into as many pieces as possible. Each piece was like a little bigger than an m&m.

Then I’d be told to force this non-verbal autistic boy to do behaviors for each piece of the sandwich. He’d cry, hit his head in frustration, and say “hungry” which was one of like four words he could use.

I have no words to describe how bad I feel about being forced to do this as a child. If he didn’t “behave” he’d get no food and he’d go hungry.

He and the rest of us were expected to perform like trained circus animals for basic rights, like the ability to go to the bathroom.

UCLA & Lovaas:

In 1961, Ole Ivar Lovaas, a native of Norway, was hired as an assistant professor at the Los Angeles Neuropsychiatric Clinic. Lovaas’ goal was to use Skinner-style operant conditioning to “recover disturbed children” from autism or other disabilities. This new therapy used harsh punishments and rewards:

The role of “moral entrepreneur” and “expert” comingled in the figure of Lovaas, who lent scientific expertise as well as moral conviction to the emerging behavioral treatment regimen of autistic persons (Douglas, 2016; Becker, 1963). The technologies involved were elaborate and precise while also brutal and blunt. Electrified floors or prods and detailed measurement devices were used in some instances along with snacks, slaps, and daily monitoring checklists that could be more readily translated outside the experiment room. While initially hesitant about the capacity of parents to replicate the rigor of techniques being innovated in his UCLA laboratory, Lovaas’s experiments on autistic bodies extended the reach of scientific regulation to parents, and particularly mothers, whom he trained to be home therapists (Douglas, 2016; Lovaas et al., 1965, 1973; Lovaas, 1987; McGuire, 2016).

Disturbing Behaviors: Ole Ivar Lovaas and the Queer History of Autism Science
Photo of Lovaas at UCLA, punishing an autistic boy for not paying attention

“Lovaas believes the whole present concept of “mental illness” is flawed because it relieves the patient of responsibility for his actions. Lovaas is convinced, on the basis of his experience and that of other researchers, that by forcing a change in a child’s outward behavior he can effect an inward psychological change. For example: if he could make Pamela go through the motions of paying attention, she would begin eventually to pay genuine attention . Lovaas feels that by I) holding any mentally crippled child accountable for his behavior and 2) forcing him to act normal, he can push the child toward normality.”

Screams, Slaps & Love
A surprising, shocking treatment helps far-gone mental cripples
Life Magazine, 1965

The idea behind behaviorism at the time was that all behavior could be changed through the use of punishments and reinforcements, no matter how strongly ingrained and ignoring the emotional and neurological needs met by the behaviors.

Behaviorism rejected the idea of unchangeable behavior at the time, believing that the therapist could modify any and all behaviors, even behaviors that stemmed from genetic disorders. This led to behaviorism being used to develop a number of treatments, some of which remain very controversial.

Gay Conversion therapy has a history with both Lovaas and autism science. Lovaas worked with “gender non conforming” children at UCLA in the 1970’s, alongside infamous pro gay conversion researcher George A. Rekkers.

The connection between ABA and Gay/Trans Conversion Therapy:

(Text in the image below is typed below the image)

Image of a study abstract from 1974 written by George A. Rekers and Ivar Lovaas. Text below.
This study demonstrated reinforcement control over pronounced feminine behaviors in a male child who had been psychologically evaluated as manifesting “childhood cross-gender identity”. The clinical history of the subject paralleled the retrospective reports of adult transsexuals, including (a) cross-gender clothing preferences, (b) actual or imaginal use of cosmetic articles, (c) feminine behavior mannerisms, (d) aversion to masculine activities, coupled with preference for girl playmates and feminine activities, (e) preference for female role, (f) feminine voice inflection and predominantly feminine content in speech, and (g) verbal statements about the desire or preference to be a girl. The subject was treated sequentially in the clinic and home environments by his mother, trained to be his therapist. The mother was taught to reinforce masculine behaviors and to extinguish feminine behaviors, by using social reinforcement in the clinic and a token reinforcement procedure in the home. During this treatment, his feminine behaviors sharply decreased and masculine behavior increased. The treatment effects were found to be largely response-specific and stimulus-specific; consequently, it was necessary to strengthen more than one masculine behavior and weaken several feminine behaviors, in both clinic and home settings. A multiple-baseline intrasubject design was used to ensure both replication and identification of relevant treatment variables. Follow-up data three years after the treatment began suggests that the boy’s sex-typed behaviors have become normalized. This study suggests a preliminary step toward correcting pathological sex-role development in boys, which may provide a basis for the primary prevention of adult transsexualism or similar adult sex-role deviation.

Lovaas is most known for being the founder of Applied Behavioral Anaylsis, but he also had a clear role in the development of gay and trans conversion therapies.

Less commonly recognized is Lovaas’s simultaneous involvement in the Feminine Boy Project during the 1970s, where he catalogued and developed interventions into the gender and sexual non-conforming identities and behaviors of young people (Burke, 1997; Dawson, 2008; McGuire, 2016; Silberman, 2015; Yergeau, 2018). He engaged in the latter project while funding, supervising, and collaborating with his student George Rekers who continues to be a central if controversial advocate for so-called gay and trans “conversion therapies.” In this lesser-known project, Lovaas catalogued and developed interventions into the gender and sexual non-conforming identities and behaviors of young people (Burke, 1997; Dawson, 2008; McGuire, 2016; Yergeau, 2018).

Disturbing Behaviors: Ole Ivar Lovaas and the Queer History of Autism Science

Kirk Murphy was a gay man sent to Rekker’s and Lovaas’ experimental UCLA program. Applied Behavior Analysis was used on Kirk Murphy for years, starting at age 5. He committed suicide at age 38, and his family has blamed the therapy.

In Rekers’ study documenting his experimental therapy (PDF), he writes about a boy he calls “Kraig.” Another UCLA gender researcher confirmed that “Kraig” was a pseudonym for Kirk.

The study, later published in an academic journal, concludes that after therapy, “Kraig’s” feminine behavior was gone and he became “indistinguishable from any other boy.”

Therapy to change ‘feminine’ boy created a troubled man, family says

Both modern ABA and conversion have the set goal of making a child appear “normal”, or “indistinguishable from one’s peers.”

Lovaas’s research provides a stark demonstration of how a “scientific/expert” projection of children’s futures has effectively rationalized coercive and violent practices against the children themselves, reshaped professional and familial relations, and bolstered the ongoing devaluation of the adults who are gestured to as a “bad outcome,” be they queer, trans, autistic, or gender non-conforming

Disturbing Behaviors: Ole Ivar Lovaas and the Queer History of Autism Science

Behaviorists like Lovaas had over-inflated egos regarding their ability to alter the nature of an individual through training:

In 2004, Ivar Lovaas said to Los Angeles Times Magazine, “If I had gotten Hitler here at UCLA at the age of 4 or 5, I could’ve raised him to be a nice person.”

Yeah, and maybe he could’ve raised him as a girl, too. Just to be safe.

NYT Buries Researcher’s Ex-Gay Legacy

Animal training:

Evie Faye featured in compliance-free, force-free animal training procedures at Wolf Park, Indiana

I was a professional animal trainer for around a decade, working with wolves, lions, bison, otters, eagles, domestics, and many more.

Animal training originated using harsh methods: fear, pain, total compliance. But as the science of animal behavior evolved, the inner emotional state of the animal became central to any decent program.

Previously, trainers didn’t ask why animals with “problem behaviors” acted that way-it was all about the surface level of behavior, as B.F Skinner believed animal’s minds to be “an input output black box.”

Modern animal science rejects this concept as outdated because an animal’s natural behaviors can only be suppressed, never fully eliminated. No matter how many thousands of hours you spend training a tiger to act like a house cat– it’s still a wild animal that can and may kill you because killing is within its nature.

For my final exam in animal training school, I trained a betta fish to retrieve a ring from the bottom of an aquarium and hand it to me. I’m very familiar with behavior modification as a science; however not all behavior modification is equal.

In animal training we have a saying, “Punishing a dog for growling is like removing the ticker from a time bomb. You got rid of the ticking noise, but the bomb will still go off, now without warning.”

Punishing a dog for growling might seem like “it works” because the dog stops the unwanted behavior. Sadly, you’ve not addressed the underlying reason WHY the dog is growling, meaning the dog still WANTS– needsto growl.

Without addressing the dog’s inner feelings, you are risking creating a dog who bites “without warning” because you have trained the dog that it’s natural warning signs are a punishable offense.

You’ve not changed how the dog feels deep down, as he still feels like growling; you’ve only trained him to suppress his discomfort in the presence of an authority figure that might punish him.

There may be ethical lessons here when we think about the still widespread use of behavior modification of humans in contemporary clinical settings: the need to respect how a person thinks and feels, respecting their real nature, rather than simply focusing on whether they can be trained to change their surface behavior.

2014: What Scientific Idea is Ready for Retirement?

What happens to kids in ABA would never be allowable according to ethics guidelines if you were training dogs with aggression issues; but because these kids are disabled, standards that are unfit for animals are considered appropriate for human beings.

This North American River Otter, a resident of Topeka Zoo, was trained to lie down in a plastic tube and receive vaccines in the belly, without force or compliance!

That and– just because something is “evidence-based,” that doesn’t mean it’s ethical. Using intensive behavior modification programs designed for lab animals on human children carries deep ethical implications.

Many autistics report feeling dehumanized by behavior modification programs like ABA. It isn’t surprising, considering that autistic people aren’t caged animals.

This lion was trained to voluntarily lie down, swoosh her tail under the med bay bars, and allow a tech to draw her blood for testing. Topeka Zoo says NO to forced compliance!

Having observed, filmed, and participated in wild animal training and handling at zoos, I can say we quite literally trained zoo animals with more compassion and scientific basis than what is used to treat autistics.

The vast majority of zoological institutions say NO to compliance/force-based behavior modification programs. Look here at modern, science based, force/compliance free training:

Zoo animals are allowed to say no. Why shouldn’t disabled children have the same right? Don’t we deserve better? If not, are we autistics lower than animals?

The Present:

A survey of autistic people found that the majority didn’t like or support ABA:

These results are surprising outside the autistic community, but generate a sarcastic, “You think?” from within the autistic community. Image demonstrates only five percent of autistics support ABA therapy for autistic children.

ABA has repeatedly been linked to PTSD.

“Compliance, learned helplessness, food/reward-obsessed, magnified vulnerabilities to sexual and physical abuse, low self-esteem, decreased intrinsic motivation, robbed confidence, inhibited interpersonal skills, isolation, anxiety, suppressed autonomy, prompt dependency, adult reliance, etc., continue to be created in a marginalized population who are unable to defend themselves.”

—Sandoval-Norton and Shkedy (2019)

One study demonstrated that respondents who had experienced ABA therapy were 86% more likely to have PTSD.

People worry a lot about their “violent” Autistic children as they get bigger and stronger and harder to control. But far too often, the “violence” is stirred up by years of very frustrating therapy…. There’s only so long that a person can take being pushed into sobbing meltdowns of frustration before they are willing to do whatever it takes to get the torment to stop.

Maxfield Sparrow, an autistic adult who underwent ABA-style therapy

Therapists will often defend criticism of ABA by stating that they‘d never intentionally harm children and that they love helping children. They are telling the truth. They believe they are doing the right thing. This is irrelevant.

My ABA therapist was the nicest woman on the planet, and what she did to me was still immensely damaging. It doesn’t matter how “nice“ a therapist is. You can be the most well-intentioned person and still harm the people you‘re trying to help. If you’re training people to go against their very nature, to do or stop doing behaviors without addressing the underlying causes, then you’re causing harm. If you don’t know about sensory processing disorder and apraxia, then you are causing harm.

Better ways than ABA?

ABA doesn’t outperform alternative therapies in scientific studies. In fact, there’s no evidence at all that is it “The Gold Standard,” which is primarily a marketing term, rather than a factual claim about ABA’s effectiveness.

“All of the children in the study showed improvements in language, cognitive, and social skills—regardless of the type of treatment—indicating the benefit of early intervention in general rather than of any particular method.”

Clinical Trial Compares ABA and Other Treatments

ABA is routinely marketed as this mythical “Gold Standard,” but in studies it is outperformed by speech and occupational therapy. Not all children need therapy simply because they are autistic, and many benefit primarily from disability accommodations and community support. Autism is unique to the person, and a “one size fits all” approach isn’t advisable.

Most of the literature review papers conclude that the intervention programs are controversial, expensive and dependent of external variables. Although the articles describing intervention processes include 663 participants, a meta-analysis is not possible due to the lack of comparable inclusion and characterization criteria.
CONCLUSION: There is not enough evidence of ABA’s preponderance over other alternatives.

Applied behavior analysis and autism spectrum disorders: literature review.

ABA has been harshly criticized for it’s link to Autistic masking.

Whether we were diagnosed early and our guardians taught us how to hide our autistic traits (or force them out of us) through harmful applied behavioral analysis techniques, or we learned the concept of masking or practiced self-degradation on our own as a way to “appear normal” to everyone else — existing as an autistic person in a world that hates us is physically and emotionally debilitating.

When You’re Autistic, Abuse Is Considered Love

My experience in ABA was typical, not atypical, but I‘m still atypical, because ABA will never succeed at it‘s goal of making autistic people “indistinguishable from their peers.” It will never “recover” people from being autistic.

I think we should be cautious to embrace any “therapy“ with the primary motive at its foundation of making someone appear normal or perform a certain way in public, because eventually, the performance can‘t be maintained and the real person slips through.

Eventually the weight of wearing a mask that says “Normal Person“ wears you down, and you can‘t handle it anymore. I think it’s important to ask if ABA therapy is embedding shame and guilt in disabled children when we tell them that their goal should be “being normal,” rather than, “being happy,” or “being a good member of society.”

ABA taught me that I should hide as hard as I can, for long as I can. So I hid, and hid, and hid. Until I hit a breaking point and started experiencing severe depression and suicidal thoughts.

The response from the ABA industry to abuse allegations has been… less than optimal.

ABA Therapists have often lashed out defensively at autistic people who raise concerns about abuse. This is so well-known within our community that ABA professionals are banned from participating in many online groups that are meant to be “safe spaces” for talking about issues affecting autistics.

If not for these bans of ABA and BCBA therapists, there would be no space to discuss abuse experienced in ABA without starting a “debate” about whether or not the abuse really happened.

ABA professionals have also personally attacked other autism professionals who have criticized the field, as well attacking parents who choose not to send their children to ABA, or choose to stop ABA in favor of a different therapy.

These incidents of gaslighting have been talked about on Rationalwiki’s ABA page:

Concerning responses to criticism:

When hearing “some children have been abused and traumatized,” the typical ethical human response would be “that sounds awful and we need to investigate this and ensure it never happens again.”[citation NOT needed] Yet ABA professionals tend to turn defensive at the hint of suggestion that the ethics of their profession might need reviewing.

Check the comments in a discussion about abuse in ABA (even one that discusses a specific incident) and you’ll see comments that boil down to “not my ABA” or “that’s not real ABA and I want to ensure you don’t think that about all ABA” (instead of maybe “give us the name of where this happened so we can investigate those horrifying allegations”).[66][67] “Honestly, the hostility we get for sharing our negative experiences should really say it all,” an autistic Reddit user has pointed out.[68]

Professionals in other fields have voiced concerns over ABA therapists attacking the reputations of professionals who have reservations about ABA, claiming that concerned critics are “spewing hate” and making “threats and accusations.”[69]

Rationalwiki’s ABA page

ABA vs. Autistic Neurology:

No training in autism is required to be an ABA therapist/registered behavior technician (RBT). You are trained in behaviorism, but not in autism, neurology, psychology, or anything related to disability studies. This is why it’s hardly surprising that ABA therapists misunderstand autistic people’s behaviors.

Stimming:

Clearly, I’m not the only autistic who has been shamed, punished, bullied, or abused for stimming.

Interventions that result in years spent trying to force a child to engage in eye contact, condition a child to stop stimming or obey commands such as “hands down,” with no apparent understanding of the function of such behaviors for children with ASD, is undoubtedly abusive and frankly irresponsible when understanding the autistic brain. Research indicates hyperactivity in various areas of the autistic brain which results in overstimulation and can explain a number of symptoms, such as aversive responses to eye-gaze (Dichter, Felder, & Bodfish, 2009; Martineau, Andersson, Barthélémy, Cottier, & Destrieux, 2010; Markram & Markram, 2010). This overstimulation is seen in the over-activation of the amygdala when eye-gaze is held for longer (Dalton et al., 2005; Markram & Markram, 2010).

How Much Compliance is Too Much Compliance?

Stims are repetitive, self-soothing behaviors autistic people engage in, both voluntarily and involuntarily. These behaviors, like hand flapping, twirling a lock of hair, staring at a sparkling object, or rocking were previously believed to be “without cause or purpose.” It’s known, at least since 2005, that eye contact causes over-activation of the amygdala– fight or flight response. That’s what’s being encouraged.

For many years, experts thought repetitive movements resulted from deprivation or even trauma, and that they hindered learning. Psychologist Ole Ivar Lovaas, an early autism specialist, reportedly referred to them as “garbage behavior.”1 He made suppressing these habits a priority. Lovaas and his followers electrically shocked, screamed at, shook and slapped autistic children2. Others prescribed antipsychotics and other stupefying drugs. Even in today’s sometimes gentler treatment paradigms, therapists often train children to have ‘quiet hands’ as opposed to freely flapping ones3.

But growing evidence suggests that repetitive behaviors have been misunderstood — and that they may in fact be incredibly useful. My colleagues and I have found that the behaviors give autistic people a sense of control, helping them cope with overwhelming external stimuli, and a way to calm and communicate their moods

Stimming, therapeutic for autistic people, deserves acceptance

Autistic people themselves have never considered these behaviors to be an issue; rather, the issue is that because we move differently-we flap, rock, bounce our legs- that’s “not normal” and therefore we must be changed.

We now have research to confirm what autistic people have been saying about stimming– it’s important to us and healthy and should be socially accepted; yet many ABA therapists continue to punish or suppress this harmless and often-involuntary behavior.

Eye contact:

ABA Therapy often trains autistic children to maintain eye contact to help them “pay attention.” On the surface, this sees harmless enough.

The problem is that autistic people have REASONS why we avoid eye contact, reasons that aren’t considered at all.

I experience blurry vision after a few seconds of prolonged eye contact. Voices become muffled, and it’s impossible to understand what anyone is saying–I feel like Charlie Brown talking to the adults from the old Snoopy cartoons.

Eye contact isn’t just uncomfortable for us, it makes it nearly impossible to pay attention: my eyes water, my eyes burn, and I start to disassociate if I stare too long. I completely zone out, unable to process anything that’s happening to me until I break eye contact.

I switch between two extremes, each have an unnerving stare that I need to read emotion on people. Most people feel like I’m staring through them. Or, when I’m completely overwhelmed with life it takes very little to trigger me. Eye contact on some days feels like an lamp shined in my eyes in a dark police interrogation room. “Where were you on the night of…?” Terror. You’re hurting me. The judgment. Cornered Animal.

-Heather, autistic author

Thus, ABA trains autistic children to ignore the best way they naturally focus in favor of “looking indistinguishable from one’s peers” or “engaging in behaviors of social consequence” (the stated goal of ABA).

I have vivid memories of this happening to me in ABA. I remember feeling like I was trapped in a positive feedback loop, because the therapist wanted me to look her in the eyes when she spoke to me and answer her questions.

I had to look at her mouth in order to understand her, but if I did, I’d be corrected for non-compliance because that’s “not real eye contact.” What was I supposed to do? Magically overcome my hard-wiring and pay attention “like a normal person”?

My therapist ignored my complaints, saying I “just didn’t want to work hard” so I worked hard at faking eye contact in therapy, and avoided eye contact outside therapy.

Punishing my nature did not alter it, but it did make me wish I was dead, because of the message that I received in therapy. I’m not “normal.” I needed to “be normal.” I have to try really hard to look people in the eyes, even though it hurts, because then I’ll be “more normal”!

Apraxia:

Apraxia, a neurological disorder that affects the ability to control one’s body parts the way you want to (like the hands or mouth), is not tested for before a therapist starts an ABA program with a child. This is absolutely inexcusable, especially considering how common apraxia is in autistic people.

The three-year study, published in the Journal of Developmental and Behavioral Pediatrics, showed that nearly two-thirds of children initially diagnosed with autism also had apraxia, and also found that the Checklist for Autism Spectrum Disorders (CASD) does not over-diagnose autism in children with apraxia.

Apraxia a common occurrence in Autism, Study Finds

I remember being punished in ABA for movements that I couldn’t control, and in some cases, I wasn’t even consciously aware I was doing it.

My hands make gestures on their own, my mouth mutters words under my breath constantly without my permission, and my mind and body aren’t fully connected.

My body has a mind of it’s own. My legs have sat me down without asking, my hands point at random nonsense, I talk to myself near-constantly.

One time I looked at my roommate and my mouth said, “You’re a centrist…” for no reason. Apparently my brain and mouth have different opinions about my roommate’s politics! Another time my mouth said, “I love you,” to a total stranger.

Believe me, I can’t control it. If I could control it, I wouldn’t have spent most of my grandmother’s funeral laughing and giggling uncontrollably. I didn’t think it was a humorous event, but I have always laughed for no reason all the time, even when I was a small child.

The therapist tried in vain to train me to stop laughing inappropriately, stop pointing rudely, stop talking to myself under my breath.

During ABA drills, an autistic person may be asked to demonstrate intelligence through commands like “touch red” or “touch cat” with cards in front of them. If the person has serious apraxia, they may be unable to touch the correct card, even though they know what it is. Thus, they may be assumed to be unintelligent when they are not.

RationalWiki’s ABA Page

The therapist believed that I could control it if I really tried. The same therapist who received no education in autism and had no idea what apraxia was, knew that I just wasn’t trying hard enough.

I feel ABA is the brain disorder equivalent of telling people who use wheelchairs that they could walk, if they really wanted to.

Work hard, Timmy. One day, you’ll pull yourself out of that wheelchair by your ableist bootstraps and next thing you know, you’ll be running marathons! Everything can be overcome by the power of effort, according to ABA, even permanent disabilities!

Reinforcement or blackmail?

If I held all your favorite things hostage, demanding that you sit down and stand up over and over, for 40 hours a week, every week, would you like being around me? What if I never even explained why I want you to do this? What if I punished for not wanting to do it?

What if I punished you for not standing up…And then you stand up next time I asked, so I stuff a piece of candy in your mouth? Would the candy make up for how I’ve been treating you?

Autistic kids undergoing ABA therapy frequently report hiding their favorite toys, hobbies, or interests from parents, teachers, and therapists. In ABA, all potential reinforcers are to be used during therapy. Parents are told not to give the child access to these items or activities outside ABA.

That means that a child doesn’t get to have a hobby, a passion, a toy, or a book, without it being filtered through an intensive behavior modification program. If a husband treated his wife this way, especially if it was 40 hours a week, it would considered emotional abuse.

“The first step in a program based on positive reinforcement is to find out what someone most enjoys or cares about…. And then making sure they have no access (or limited access) to those things outside of sessions or other situations in which someone is actively reinforcing them to do something.”

Appearing to Enjoy Behavior Modification is not meaningful

The use of food rewards on humans is questionable, because in the animal training industry we know that animals frequently become prompt dependent and have issues with independence from the trainer, which we have also seen in autistics sent to ABA:

Spouses of individuals with then-called Asperger’s Syndrome who were exposed to conditioning utilized in ABA, disclosed living with the consequences of prompt dependency and identified lack of self-motivation as a constant source of stress within their relationships (Wilson et al., 2014). These spouses also identified as filling a parent or caregiver role instead of a partner role. Additionally, prompting was found to be embedded within most that couples’ interactions and generally permeated their relationship (Wilson et al., 2014). Other research indicates that prompt dependence has been found to inhibit or prevent the development of age-appropriate social relationships and interpersonal skills in children, which also contributes to lack of motivation and unsuccessful learning (Malmgren & Causton-Theoharis, 2006). Considering research previously noted, it is not surprising that ABA therapy has long-term consequences, and has created prompt-dependent adults who lack in self-motivation and self-esteem. Shockingly, there is a lack of research that describes the many years of relentless conditioning of nonverbal children who cannot defend or express themselves.

How Much Compliance is Too Much compliance?

Meltdowns:

Meltdowns are not behavioral, they’re not tantrums, and they are not voluntary. When a meltdown happens, it is a neurological firestorm in the brain somewhere between a severe panic attack and a seizure. Click here to read about how meltdowns feel from the inside.

Best example of ABA misunderstanding autistic behavior? Meltdowns. Autistic meltdowns are an involuntary stress response that can look on the surface, a lot like a typical tantrum.

The problem with a surface-level understanding of behavior modification is that many behaviors caused by different things can look alike.

Politeness is a surface behavior. Nothing about the person’s politeness can tell you why they’re being polite to you. Are they a salesman, or just friendly? Without investing the “why,” you can’t make any meaningful assessments of this “behavior.”

Unfortunately, ABA believes meltdowns are “attention seeking behaviors” due to the surface-level similarities, and as a result, punishment is not unique in ABA. Punishing a child for a neurological reaction they can’t control is abuse, and it’s inexcusable.

Sexual abuse and ABA:

Content Warning: this section contains an account of sexual abuse

When I was 9 years old, I willingly performing oral sex for a teenage boy who was much older than me. He did exactly what my ABA therapist did: he told me that he wanted me to do something that I wasn’t comfortable doing, and he offered me my special interest, a pokemon toy, for my “compliance.”

Years of being trained to obey adults who made me uncomfortable, years of forced eye contact that caused me suffering, forced hugs, forced closed mouth kisses, sit up, sit down, sit up, sit down, sit up, sit down… These therapists had unintentionally taught me that adults should be able to do whatever they want to my body, and I was never allowed to refuse the therapist’s requests; after all, I’m supposed to be compliant in therapy.

The problem is what happens outside therapy. Outside therapy, I had no skills aside from blind obedience.

When an older teen pressured 9-year-old me into giving him oral sex, I agreed for the same reasons I agreed to let my therapist hug me. My body wasn’t mine, and my wishes weren’t important.

I’m not alone in asking how ABA impacts abuse statistics:

A lifetime of being forced to sit still with no regard for actual cognitive abilities can create further emotional and psychological harm. With such drastic methods of conditioning, it is heartbreaking but not surprising to learn that the odds of being a victim of a violent crime is doubled among individuals with disabilities, and individuals with cognitive disabilities have the highest risk of violent victimization (Harrell & Rand, 2010). Additionally, individuals with disabilities are sexually assaulted at nearly three times the rate of those without disabilities (Disabled World, 2012). So how much compliance is too much compliance?

How Much Compliance is too Much Compliance?

Radical Behaviorism is outdated science:

My scientific reason for arguing for Radical Behaviorism should be retired is not to revisit the now stale nature-nurture debate (all reasonable scientists recognize an organism’s behavior is the result of an interaction of these), but rather because Radical Behaviorism is scientifically uninformative. Behavior by definition is the surface level, so it follows that the same piece of behavior could be the result of different underlying cognitive strategies, different underlying neural systems, and even different underlying causal pathways. Two individuals can show the same behavior but can have arrived at it through very different underlying causal routes. Think of a native speaker of English vs. someone who has acquired total fluency of English as a second language; or think of a person who is charmingly polite because they are genuinely considerate to others, vs. a psychopath who has learnt how to flawlessly perform being charmingly polite. Identical behavior, produced via different routes. Without reference to underlying cognition, neural activity, and causal mechanisms, behavior is scientifically uninformative.

Given these scientific arguments, you’d have thought Radical Behaviorism would have been retired long ago, and yet it continues to be the basis of ‘behavior modification’ programs, in which a trainer aims to shape another person’s or an animal’s behavior, rewarding them for producing surface behavior whilst ignoring their underlying evolved neurocognitive make-up. Over and above the scientific reasons for retiring Radical Behaviourism, I have an ethical reason too.

2014 : WHAT SCIENTIFIC IDEA IS READY FOR RETIREMENT?

ABA professionals act like they don’t want to listen to the very individuals they claim to be helping. The highly ethically questionable, “But it works,” should never be the baseline requirement for therapy, and ABA professionals have an obligation to take the ethical concerns with their industry seriously.

Unfortunately, they haven’t. There appear to be no signs of major ethical reforms or changes based on what adult survivors are reporting.

As long as the ABA industry denies it’s dark past, gaslights autistics who complain about abuse, refuses to include training on autism in their requirements, supports the use of electric shocks/hot sauce/wasabi and other painful aversives, doesn’t mandate learning on sensory processing differences, doesn’t mandate education and screening for apraxia, and claims uncontrollable neurological responses like meltdowns are “attention-seeking behaviors,” I see no reason to change my mind.

ABA professionals owe our community an apology, at the very least. It would mean the world to me to hear, “I’m sorry, we didn’t know any better,” in regards to my therapy, a program which had the goal to get me to suppress uncontrollable behaviors through sheer will power, increasingly-creative and horrid punishments, and the use of M&Ms.

M&M’s aren’t a solution to neurological impediments, by the way. No matter how many M&M’s you feed me, I’ll still be autistic and want to act autistic.

Training my outward behavior does nothing to change my underlying neurology or motivations, it only teaches me to be ashamed about my lack of control over my body, my disability, my neurology, and my ‘failure’ to be ‘indistinguishable from my peers.’

The Future:

The only ethical future for autistic children is one where we don’t rob a two year old of a childhood by subjecting them to 40 hours a week of intensive behavioral modification.

No non autistic child would be expected to hold down a full time job, and expecting a disabled child to handle something that many non-disabled adults struggle with is unacceptable.

ABA would never fly if we were talking about a typical child. Non-autistic children aren’t subjected to the over pathologization of every aspect of their lives and are allowed to be children.

Autistic people are dehumanized when we pretend that a five-year-old won’t be emotionally impacted by having to maintain a full time job in terms of workload, on top of kindergarten. Where is there time to just be a kid?

These children in intense behavior modification have no weekends, no free time, and no time to socialize with other kids outside a therapy or school setting. Is “being normal” worth having no childhood?

How many hours did ABA steal from my childhood? I don’t know, but I do know that I spent many days in ABA crying, kicking, screaming, and being suicidal, and those suicidal thoughts stem from years in therapy being told to try to hide an important part of who I am.

It’s completely unacceptable that BCBAs and ABA practitioners don’t have to have any training in autism specifically, and yet they are touted as the premiere autism experts.

ABA is behaviorism. They are behaviour modification specialists, not experts in developmental disabilities, autism, or neurology. This is a pretty big problem because autism isn’t a behavioural disease, it’s a neurological disorder and developmental disability.

No amount of behavior modification can change that I’m disabled. As a child, I didn’t know that, and tried very hard to pretend to be “not disabled” so I’d get good marks in ABA.

Is it advisable to teach children to hide their struggles and discomfort in order to get rewards, toys, games, and praise from adults? Is that a healthy thing to teach a kindergartner?

It’s not acceptable, ethically, to deny the problems with ABA. It’s not ethical to deny the electric shock and its history of being used on gay and “feminine boys.” It unethical to deny the recent Government Report from Tricare that found ABA therapy is largely ineffective.

It’s unethical to ignore that many autistic adults who went through ABA are outspokenly against it and refer to themselves as “survivors.” If there were no ethical issues with ABA as a field, people wouldn’t be comparing it to gay conversion therapy and branding themselves “survivors.”

Chemotherapy is notoriously awful, and yet cancer survivors aren’t protesting chemo en masse. Dialysis is a nightmare to go through, but people aren’t protesting dialysis en masse. Autistic adults aren’t protesting speech therapy, or occupational therapy, dialectical behaviour therapy, or neurology (which is far better suited to help us because autism is neurological, not behavioural).

We are only protesting ONE type of therapy, and it’s about time people started asking why.

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9 Responses

  1. Excellent, but let’s start calling classical ABA what it is…Autism Conversion Therapy.

  2. Aba has changed drastically from its past. Even in the last 5 years. Yes you get bad and untrained aba tutors claiming they know what they are doing but they don’t and may be applying the wrong or unethical behavioural principles. just like some awful teachers I’ve seen screaming at and belittling children. as sad as it is. It happens. Aba needs to be regulated!! But REAL aba has extremely ethical guidelines and code of practise. Autistic genius like Tempal Grandin merit aba as the reason she started to speak and openly promotes it. I mean I could go on about it’s benefits and how it can change lives but I’ll stop. It’s a shame you feel so negatively but I believe discouraging others from researching and considering such potentially life changing therapy is a shame.

    1. It was speech therapy that helped Grandin [start to, as you say, M] speak when she was 3 and a half, M.

      She had a year’s work there. [source: Thinking in Pictures and Emergence].

      I remember in Emergence she answered the phone with her one-syllable sounds – one of the more powerful moments early in that book.

      Even then her sounds came out with heavy stress – not the joyful sounds so many of us would associate with childhood – autistic childhood included.

      That “ice ice ice” scene – shows you very powerfully the way she thinks and thought when she was a preschooler.

      I might say “ice ice ice” when slushies are there to be had.

      Sound was not Grandin’s joyous sense except for one time when she would fly her kite and say “Prosecution” – it was a kinaesthetic liberation.

      Miss Reynolds tried to form a strong relationship with the young Temple – like her Nanny did and of course her Mother.

      Now you and I might legitimately disagree about the relative proportion of relationship-based intervention and its purposes and consequences.

      A relationship would simply be a relationship and not be a tool or bargaining chip.

      I am not going to say anything about Grandin’s Dad – except to say he was very very like her especially when it came to her temper and other traits. She did identify with him a lot – tennis shoes incident – the one time he got into a paddy with her – that is in Emergence and I remember. And he wanted to send her away when she was a young teenager after she had been expelled from her local school [which was private]. Or for that matter about her siblings except when they come in.

      [Thinking in Pictures – two of the younger siblings had auditory processing trouble and overwhelm and figure ground stuff and reading troubles].

      [perhaps you are thinking of the Nanny’s techniques – and the Nanny tried very hard to understand Grandin’s sensory issues – especially on a boat to Cape Cod where the foghorn was VERY LOUD and the boat was very ROCKY – and gave her and her sister experiences like sledding and snowpeoplemaking].

      Then there was the Beaver neighbourhood – perhaps there is some revisionism on Cutler’s part after the Thorn in my Pocket book – or simply hindsight.

      Sometimes the researching and considering is very discouraging in itself – to say the least.

      Even with TEACCH there is a BIG difference between “teaching to the culture of autism” and “embracing autistic culture”. If your methods and techniques respect and aspire to the latter.

      Yours truly had a Grandin flashback this week when I broke one of my pencils or one of them lost its lead. Specifically it was to a Purves-Grandin-Cutler diary entry at the end of chapter 1 – and it is about how her mother tried to help Temple solve her problems in a highly motivating situation – drawing and colouring – and we see some of the first manifestations/flashes of how she works through her frustration. And the dialogues she would use. They would draw pictures separately and together.

      “not with grace but with gumption”.

      And between 2015 and 2020.

      Yes – tutors and teachers do belittle and insult children. And they do it in a framework and a context which would tend to give permission and a benighted intolerance towards deviance. Which has become terror and torture.

      And for those children for whom a whisper would be as triggering as a shout or scream [Screams Slaps Love – I fear that has not changed much in 50 years – 1965-2015]. Remember that in 1986 Grandin wrote to Rimland – or at least some time in the first half of the 1980s when she was studying Animal Science – about a bit in INFANTILE AUTISM which concerned touch reactions. [Source: Introduction to Emergence {1986} ; Neurotribes {2015}].

      “But REAL aba has extremely ethical guidelines and code of practise.”

      I really really wish that were the case.

      If that were the case I would support it – as I would all guidelines which tend towards ethics in theory and in practice both.

      Perhaps you [my invitation is open to all readers of the Aspergian and supporters of NeuroGuides] might like to review “Working – Coping – Surviving” and the “Technical Appendix” to see what Grandin does and doesn’t support as of 1989. I believe this would give us invaluable social and historical context which is missing in the New York Times article and much previous work.

      Also make friends with the bibliography. “Real scientists don’t use the World Book Encyclopaedia” said Mr Carlock [Temple’s dedicated mentor and friend in her alternative high school who supported her in her first degree and higher degree efforts] and humanitarians/humanists like me should not be using Wikipedia – or their memories. Not when we pretend to research and information – as opposed to entertainment and marketing.

      [In all fairness Emergence was pressed on me at a sensitive period between January 1997 and July 1998 – as was Thinking in Pictures. Have read also many of Grandin’s papers – the ones in her own voice that Oliver Sacks has said a lot about – the ones on her two websites. Focus on Autistic Behaviour has a good early one – also Why I think like a website and Careers for Autistic People].

      I seem to remember she supported holding therapy under the Welch model which was highly and heavily promoted as a “cure” for autism within a primary attachment relationship [Technical Appendix].

      And I like the way you put it into small letters like it was an ordinary method and not one which is highly trademarked and copyrighted so to speak.

      And protect us all from people who think they know what they are doing. One of the statements I come to fear most is [in word and in deed] “I’m heaps grown-up and I know what I’m doing” [when we remember that ABA tutors are from the adolescent class in wholemeal psychology – or at the other end of the demographic spectrum – I am loath to make “Product of my Time” arguments].

      “Wrong behavioural principles” and “unethical behavioural principles” – two different boxes/sets. Of course the unethical in thinking brings out the wrong in deed – or intent/impact. Yours truly has seen a 2017 edition of that code.

      Who regulates the regulators? We have seen so many examples where self-regulation has failed and it has hurt and harmed the people we would wish to serve and far beyond.

      And I am very sure you would not want that – nor would you want it to continue.

  3. Dear Faye,
    1. I think you are absolutely right. That classical aba or ‘Behavioral Shaping’ as we derrogatively learnt about it in our ABA studies, was a horrible offence to many children, and I can understand, though not support, how the officials of ABA would be ashamed of it.
    It was an arrogant and harmful endevour, that hurt a lot of children in the name of ‘scientifically proven’.

    2. Newer ABA is not without it’s faults and it still has a way to go, but it does have newer, remarkable tools, and much deeper understandings of the behavior. It does take into account (in quite an elegant and intelligent manner) why a behavior occurs, and what is the least intrusive way to help the child get what they want in an appropriate manner.
    In fact, since around the 80’s it is extremely uncommon to even find a study that used any for of punishment (including ‘time outs). Even exinction is pretty rare.

    ABA HAS GONE A REALLY LONG WAY.
    I think that there is also much more important humbleness in most ABA professionals that I’ve met, though i’ve also met the type you’re describing.

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