An Open Letter to the NYT: Acknowledge the Controversy Surrounding ABA31 min read

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, Olé 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: Olé 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, © 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: Olé 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: Olé 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 Olé 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:

Because it feels deeply per­sonal and uncom­fort­able. I feel as if I’m vio­lating both you and myself. Due to how it makes me feel, I’m unable to hold a thought and com­mu­ni­cate effec­tively when engaged in eye con­tact. I may engage for a mil­lisecond here and there for your sake, so you don’t feel uncom­fort­able, and I don’t appear rude. I’d rather stare at your neck­lace or top of your shirt. Substantial eye con­tact is easier for me with people I know on a deep level.

-Jamie, 42, autistic writer and mom

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 pre­mière 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.

Fay Fahrenheit
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5 Comments

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

    1. Thank you Steven,

      the Autistic Women’s and NonBinary Network do call it Autistic Conversion Therapy a lot.

  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.

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