Breath & Shadow
A Journal of Disability Culture and LiteratureFall 2016
At The Expense of Joy: Human Rights Violations Against Human Beings With Autism via Applied Behavioral Analysis
By Dr. Kelly Levinstein
Applied Behavioral Analysis (ABA), a multi-billion dollar cottage industry in the United States, is based on the work of Dr. O. Ivar Lovaas, who borrowed the principles from his experiments attempting to cure feminized boys at risk of homosexuality (Rekers & Lovaas, 1974) and the accompanying aversive of electric shock and corporal punishment. Lovaas used the rationale that homosexual behavior was (in California at the time) illegal. Moreover, he also shared the same fundamentalist Christian values as the parents who brought their children in for alleviation of feminine symptomology and possible homosexuality.
He objected to homosexuality being removed from the Diagnostic and Statistical Manual of Mental Disorders and proposed that it be returned there, expressing indignation that those with the pathology of homosexuality had any say in its classification and treatment. Dr. Lovaas’s NIMH funding terminated in 1976 due to complaints of excessive corporal punishment against children. He then began to use ABA on Autistics. While he wisely distanced himself from his former treatment of gay children, the later treatment of Autistics has made him a legend.
Dr. Lovaas’s initial work at UCLA in the 1970s “curing” gay children was generously funded by the National Institute of Mental Health. This comprehensive and intensive behavior intervention used the principles of operant conditioning to displace feminine, homosexual maladaptive behaviors, which were punished and replaced with more masculine, heterosexual behaviors, which were then rewarded. Dr. Lovaas and his colleagues advised that these children eventually became “indistinguishable from their peers.” This same phrase was used to describe Autistics who are now forced to undergo ABA. They are also said to become indistinguishable from their peers (Lovaas 1987). This, in fact, is the stated goal of ABA.
The most effective punishments with both populations per Lovaas were spanking or hitting the children. Lovaas lamented that he was unable by law to hit the children harder, particularly one female Autistic child whom he referred to as “fat” (Lovaas 1974). The authorities finally intervened and forbade Dr. Lovaas from further use of corporal punishment. He also presided over gay conversion camps, which are still in existence today in the United States, attempting to make gay and lesbian youth heterosexual.
Applied Behavioral Analysis (ABA) has always been grounded in human and civil rights violations. This historical context is crucial to understanding present ABA, as is the present ABA corporate industry’s attempts to distance themselves from their origins.
In 1991, researchers from Rutgers, including the well-known behaviorists Sandra Harris and Jan Handelman published a study about the consequences of aversives in Autism programs, comparing the morale and job satisfaction of more than 100 staff, divided into those who could use only mild aversives, and those who could use severe aversives on their Autistic clients. Severe aversives included (but were not limited to) slapping, pinching, electric shocks, noxious odors, noxious liquids and hair pulls (Harris, Handelman, Gill, & Fong, 1991). Restraints were removed from the scope of the study when no one involved could decide whether their use on Autistics constituted a
mild or severe aversive.
It was discovered that those applying severe aversives were happiest and reported less job-related stress and greater personal accomplishment. In fact, the longer they had been at it, the more personally accomplished they reported being. The authors concluded that allowing staff to use a wide range of interventions, including strong aversives, may diminish job stress and enhance one’s sense of personal efficacy, suggesting a certain personality type that is attracted to the control and domination inherent in ABA.
CUNY researcher Brown (2008) observed that ABA providers are more likely to be comfortable with the use of aversives, including restraint, seclusion, and food, water and sensory deprivation as well as electroshock, particularly against the disabled, who are often seen as "less than human" (Lovaas 1974).
More specifically, social workers at insurance companies are authorizing hundreds of millions of dollars for ABA without ever having seen the practice in action. They are often surprised when they are informed that it requires physical restraint—often of two-year-olds for 40 hours per week and upwards. Any child development expert will advise that 40 hours per week of restraint for a typical two-year-old is not advisable, much less a two-year-old with Autism, who has significant sensory issues and a high need for vestibular input. These social workers believe that they are helping families, sadly unaware that they may in fact be funding torture.
Parents are not advised to see a geneticist after their child with Autism has been diagnosed, to determine syndrome and accompanying IQ. If this were the case, it would be clear that the vast majority of people with Autism are not ABA candidates; i.e., they do not have the intellectual capacity to learn from the restraint and constant commands. Parents—desperate and devastated by having been given no strength-based perspective of Autism—are told that their child's Autism is a "death sentence" (Autism Now 2013) but that a reprieve is possible. Their afflicted children may be cured, they are told, but time is of the essence, and ABA is their last chance. Thus, they are told to obtain a minimum of 40 hours per week of ABA before the opportunity of the developing brain passes. Tragically, by the time they may find out that their child has a 20 IQ or lower, sometimes many years have passed and many millions of dollars have been spent.
It is very difficult for some parents to accept that their child will never be typical. Rather than being encouraged, parents are given false hope or told to mourn the typical child that they will never have, the college graduation and the wedding that they will not attend, and the grandchildren that they will never have. As social workers, we are uniquely trained and experienced in the mourning process. Rather than advocating for the boundless amounts of money to fund ABA, we would be better served in assisting families to mourn these expectations and/or celebrate their child with Autism. We need to ask ourselves as social workers if the parents’ need to have an indistinguishable child should outweigh the child’s need for integrity and self-determination.
A few words must be said about the large "not-for-profit" Autism organizations, all headed by neurotypical people who almost uniformly support ABA. Although these organizations raise hundreds of millions of dollars each year, a miniscule amount is delivered for PEOPLE with Autism to assist the quality of our lives. According to the HHS Office of Autism Research Coordination, only 2.4% of NIMH's research funding goes toward research on services and only 1.5 % is directed toward adults with Autism. (Autistic Self Advocacy Network personal communication April 15, 2014). The money is spent on either “curing” Autism or, even more depressingly, on the prospect of detecting Autism via amniocentesis to ensure that people with Autism will no longer be born. The vast majority of funding through large Autism organizations is funneled to microbiologists working on prenatal testing, which could result in eugenic extermination of people with neurological differences, which Dr. James Watson refers to as “curing stupidity” (The Sun Herald, March 2003). Watson is famous for his white supremacist comments as well, in particular that Black people do not have the same intelligence as white people (The Sunday Times, Oct 2007.) In 1997 he advised the same newspaper that a woman should have the right to abort her unborn child if the tests could determine that the child would be homosexual.
At present, 92% of families who discover that they are having a child with Downs Syndrome make a decision to terminate the pregnancy (Massachusetts Down Syndrome Congress, 2013). If Autism is able to be detected via amniocentesis, the expectation is that 92% of pregnancies involving a fetus with Autism will also be terminated.
This is a urgent moral crisis that necessitates social workers to examine our value systems. Is this something social workers may want to reconsider? Eugenics is not the topic of this work- but as the time is drawing so near for it to any longer be a choice- I am posing the question at this time for your consideration. URGENTLY.
In discussing the basis for his treatment, Lovaas wrote of Human Beings with Autism in 1974, "You see- you pretty much start from scratch when you work with the Autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping Autistic kids is to see it as a matter of constructing a person. You have the raw materials and you have to build a person” (Rekers & Lovaas, 1974). Lovaas, in borrowing the principles from his earlier torture of gay children, began to impose similar strictures on children with Autism, a population which many would argue have an even greater vulnerability.
Applied Behavioral Analysis is aversive-heavy experimentation, claiming that half of all children subjected to its methods could be made to look “indistinguishable from their peers” (Rekers & Lovaas, 1974). This is at the crux of the ABA movement-i.e., rendering people with Autism invisible as a distinct group void of all remnants and gifts of Autism. Nine out of 19 children in the experimental group underwent ABA for 40 hours a week for two or more years. The ABA industry has always downplayed and even denied the importance of aversives in achieving this famous 47%.
Further difficulties with the findings are that Dr. Lovaas and his colleagues have never
acknowledged progress through a course of natural developmental for Autism and also never discussed the importance of IQ and syndrome to future prognosis.
Autism is an organic, lifelong neurological disorder that no amount of aversive conditioning, torture or torment will ever be able to “cure.” What does sometimes however occur is that, if Autistics are frightened and deprived enough eventually—like dogs or other caged lab animals—they succumb out of frustration and utter helplessness, and, as common with any victims of torture, to give the ABA trainer what the trainer has demanded of them. This stress response, however, is possible only in the event that the Autistic has the capacity to give the ABA trainer what they demand. If the IQ is too low, and the Autistics have no receptive language capacity, they will not make the connection that they are supposed to provide: eye contact, touch red etc. Thus, they may become increasingly frustrated, and may even engage in self injury, often for the first time in their lives. This scenario is most likely to result not just in injury and PTSD, but also in depression and OCD due to the constant replications over and over day in and day out (Carly Fleischman personal communication, 2013).
Seclusion, restraint and aversives have been proven to be ineffective in modifying behavior. In fact, they actually increase behavior in many children and have the potential to cause physical and long-lasting trauma to the child (Jones & Timbers, 2002; Magee & Ellis, 2001; Natta, Holmbeck, Kupst, Pines, & Schulam, 1990). Gernsbacher (2006) has advised that the effectiveness of ABA for Autistics is a myth and misconception since the gains made during the treatment are actually due to the child’s development, rather than ABA.
This then raises the question of whether ABA, apart from its great expense and its grounding in torture, is also completely ineffective. As the ABA trainers never obtain the IQ and syndrome prior to training, they have no way of understanding if the person they are seeking to train has a 20 or a 200 IQ, has an innate capacity for speech or has no such capacity. Human beings with Autism are trapped, often by straps, inhibiting their movements until they comply. When there is no ability to comply, the person with Autism will often become self-injurious for the first time in their lives. Subsequently, the ABA trainer then advises family members that more ABA is needed to quell these new “behaviors.”
Ironically, if the person with Autism has no capacity to understand the demands, he or she is at even greater risk, and is described as “non-compliant.” Most often, ABA trainers are unaware that there are multiple syndromes that underlie Autism and do not understand the importance of obtaining this information prior to beginning the training. For the person with average or borderline IQs who can obey the commands of the ABA trainers, it is “at the expense of joy,” as expressed by Child Development expert and advocate Dr. Toni Spiotta from Montclair University Child Development Center (personal communication). From this perspective—a Human and Civil Rights perspective—there are no successes in ABA; there are only broken and traumatized human beings, who do what they are told.
Of course, by social work standards, this is a very high price to pay. “Touch Red!” This is often a beginning command utilized in ABA, which assumes that the person who is commanded has receptive language and is able to distinguish colors and understands the concept of “touch.” These are complex intellectual processes. This command is repeated over and over and over again, thousands of times while the Autistic is restrained.
Another beginning command is “Look at me.” It is viscerally painful for Autistics to look at people. They comply because it is expected of them. This, however, does not make it any the less painful. In the Autistic community, such self-protection is referred to as gaze aversion, not the lack of eye contact, as it is discussed it from the perspective of the Autistic child rather than from the neurotypical perspective. Once again, the ABA trainer assumes that the person has the capacity for receptive language and is being willful and non-compliant if he or she does not look at the ABA trainer.
An even greater assumption is that this is good for the Autistic person. This assumption, an imposition of neurotypical values, has caused great harm to Autistics. The philosophy behind all of the restraint and the commands is that the person with Autism will be able to generalize the learning and will then seek to look at each and every person who passes. Autistic people will, at some point, no longer look as if they have Autism. ABA will help them to struggle to maintain eye contact with the ABA trainer.
This is the ultimate goal, desired not only by the ABA trainer, but, tragically, also by the parents of the person with Autism who are often ashamed of their child and who desire that she/he look typical, regardless of the cost in terms of emotional comfort to their child.
There is some beginning evidence that Autistic parents of Autistic children experience less narcissistic injury and less reported exhaustion due to the absence of the need that their child appear typical (Hala O’Keeffe personal communication).
The term “behavior as communication” refers to the child’s effort to communicate dislikes, needs, desires etc. but who cannot do so because of a communication deficit (i.e., no speech or limited speech). When an Autistic’s behavior is seen merely as bad behavior and not as an effort to communicate, the Autistic can become even more frustrated, thus causing escalation. People who are not properly trained to distinguish these “behaviors” or to decipher the communication attempts can sometimes escalate the Autistic to a critical point where the use of physical and/or mechanical restraint comes into play.
The behaviors that Autistics are supposed to lose include any behaviors which make them visible as being Autistic, including rocking (tremendously self-soothing) and hand flapping. These behaviors are often referred to as “stimming” in ABA language, considered undesirable because they result in pleasure for Autistics and withdrawal from neurotypical people. Withdrawal is often a severe narcissistic injury for neurotypical people to bear.
When Autistics are stripped of all of their self-soothing mechanisms, particularly harsh because negotiating the world of sounds, lights and textures is so often debilitating, that are so vital to surviving in the world which has been created with no thought or concern as to their needs or preferences, they suffer.
ABA is largely performed by unlicensed paraprofessionals with no advanced degrees. They are, in turn, supposed to be supervised by Masters-level BCBAs; these supervisors are also not psychotherapists and not providers of any mental health training. In truth, “supervision” often includes one initial observation of the child. Often, however, this is not the case and there is no observation of the child by the supervisor. The initial observation, when it does occur, most often happens by Skype, or by telephone. Increasingly, there are paid reviewers, who have neither met the child, the ABA trainer nor the supervisor. They conduct 50 reviews a day on Autistics from across the United States, often providing the exact same treatment plan for all of them. ABA has clearly become a large-scale, mass-produced assembly line.
The BCBAs also do not have Autism, but they have decided that they know best in terms of what people with Autism need to learn or adjust. This always includes the person with Autism being socialized into the dominant culture and giving up whatever soothing self-protections deemed necessary to survive. The fact that ABA trainers are not therapists or social workers is key in understanding the fundamental value differences and philosophies between education and social work vis a vis respect for human beings and self-determination. Even if one were to argue that ABA paraprofessionals and trainers are helping people with Autism, they are helping them through a form of training or education, not through a therapeutic venue.
The supervisors—BCBAs—have chosen education rather than social work as a profession and adhere to the values of education the way that I am hoping that we as social workers adhere to the values of our profession. I am proposing that the values of these two professions are in conflict regarding Applied Behavioral Analysis, and I am asking my social work comrades to stand up and be counted—to pick up the gauntlet that I am laying down and work to oppose ABA on the grounds that the practice is a Human and Civil Rights violation against people with Autism and Intellectual and Developmental Disabilities.
I am also calling upon social workers to reconsider responses to a family where a child has recently been diagnosed with Autism. Rather than assisting them in suing their school districts to obtain more ABA (as the large Autism organizations recommend them to do) and putting them in touch with attorneys to lead this charge, please recommend that they see a geneticist in order to obtain syndrome and IQ. This will ensure that over 95% of the people currently receiving ABA will be spared, and parents will be spared the prospect of collaborating in the torture of their own children. Utilizing a strength-based model for Autism when working with families can educate them as to the many gifts that Autism brings. However, most importantly, I am asking that you oppose the practice of ABA on Human and Civil Rights grounds.
Make no mistake—this is a call to action. I am asking you to be brave and to chart a new course—to go against the standing social order that tells us that Autism must be cured and the people with Autism should be stripped of every possible defense they have been able to muster and of all of their joy. Even if we believed that ABA had the capacity to transform a 20 IQ into a 200 IQ, even if we believed that it had all the magical properties that the corporate ABA industry and the large multimillion dollar Autism organizations try to convince us it does, I would still ask you to oppose this practice as a social work body on the grounds that it is a Human and Civil Rights violation, that it is, in fact, torture as defined by the Geneva Convention Part 4C(c) outrages against personal dignity, in particular humiliating and degrading treatment (1949).
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Dr. Kelly Levinstein is per the IFSW (International Federation of Social Workers) the only out Autistic PhD level Social Worker, not just nationally but also globally. Prior to coming to Flint Michigan and being actively poisoned due to capitalist greed, she was a Social Worker for 40 years and worked as a civil servant, in private not for profit, in special education settings, in private practice, as a consultant for the Archdiocese of NY and NJ, Amnesty International, Human Rights Watch and at the nation’s largest insurer authorizing care for Autistics and investigating fraud before beginning life as a full time academic and researcher in 2014.
This, after receiving her BSW, MSW, Advanced Certificate in Clinical Practice and PhD in Clinical Social Work at NYU where she was the Heilbein Scholar and the recipient of the Founders Day award. Levinstein taught in the Masters and Doctoral program there for a decade as well as in the Undergraduate program at the Ramapo College of NJ.
She is the Human Behavior in the Social Environment lead at the University of Michigan/Flint and is researching specifically Human and Civil rights violations against the Autistic community through Applied Behavioral Analysis. Levinstein was just appointed for a 3 year period to the CSWE (Council on Social Work Education) committee on Disabilities and Persons with Disabilities. She is an ABA and special education survivor who has dedicated the remainder of her life to ceasing the torture and mistreatment of the Autistic population.